# CT scan - some thickening of proximal duodenum?



## Niks

Have just received a copy of the letter from J's GI..

At last consultation he questioned her vomiting, and said there was no cause and her bloods have come back normal.  (B12 was very low and she did have B12 loading dose)

She is still vomiting EVERY day, and vomited blood two days ago.  

GI said all tests have been clear!  This is what he put on letter to GP though.

Diagnosis:

Coeliac disease
Persistent vomiting ? cause
*Barium follow through - vomited Barium: poor emptying
CT scan - some thickening of proximal duodenum!!!!*

HOW can he say that her tests have come back NORMAL??  This isn't normal!

Does anyone know what thickening of proximal duodenum cause could be?

Thanks you


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## lukefarrell

It sounds like it could possibly be a stricture , which in turn can cause obstruction of the small bowel or partial obstruction.

What other symptoms is your daughter experiencing?


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## Niks

She has been admitted 6 times to hospital since last October.  Twice with partial or obstruction.  

Vomiting is the worst symptom, she barely holds anything down. Has had two episodes with vomiting blood, 1st was clots, second dark red blood.
Weight loss of over 2 stone
Initial symptom was rectal bleeding - colonoscopy showed some inflammation.
(while on prednisolone she doesn't bleed but it comes back when tapering off)
Lower left abdo pain.  This is constant, but varies in severity.
Uses lots of laxatives, but now bowels open very irregularly, 5-10 days apart.
Aches pretty much all over. 
Had severe pins and needles, but this has gone after B12 loading dose.

Her bloods come back in the 'normal' range, except B12 which was really low.

Her GI asked me if I had 'seen' her being sick!!!  He doesn't seem to take her seriously and basically told us that her tests had all came back normal, then I got this letter today!


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## dannysmom

Wow .... when is her appointment with a new GI again?


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## Niks

Jeanne - she hasn't got one yet!  Waiting on complaints procedure and possible MRE, but haven't heard whether that has got approved by funding panel.

She is so unhappy at the moment.  I am very worried about her.  She is tapering off all meds and has agreed if she gets any worse that she will go to another hospital.

:yfrown:


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## lukefarrell

From what you are describing it sounds like she has a stricture, this could be due to current inflation or scar tissue. You need to get to the bottom of this and get a solution it is possible, your daughter just needs the correct treatment. This could but finding which drugs are going to keep her in remission or possibly surgery to repair the stricture. 

Also if you are not happy with your GI then make this known and most of all be persistent with the doctors until you get the results you need and answers you want for your daughter. It's their duty to answer every single question and query you have over and over again so don't leave the next appointment until every base is covered.


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## Niks

Thank you Luke.  She refuses to go back to her GI, as she was made to feel she was lying and it was all in her head.  

We are pushing for a second opinion, it should never be this hard though or take so long!


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## lukefarrell

It's frustrating and she will probably be very angry (understandably) but the older I get the better I am getting at standing up for myself when not provided with what I feel is an unacceptable response from my GI. It took me 2 years of constant trips to the GI to convince them I had to see a surgeon as I thought I had a stricture. They kept saying I had constipation and sent me home with laxatives. But I persevered and got surgery last September on what turned out to be a 15cm stricture in my ileum. 

Just keep at it and keep going and you will get there eventually! Good luck


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## Devynnsmom

I don't have any advice on what that could mean. But I hope you get to the bottom of it soon. I think I would blast that doctor for telling you everything was normal!! Keep pushing for another doctor. ((((((hugs)))))) to both of you. I can't imagine how frustrated and exhausted you must be.


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## upsetmom

I don't blame your daughter for not wanting to see this GI again....i personally wouldn't take her back.....try find another DR .

I hope someone finally gets down to the bottom of this it's been going on for too long.


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## Niks

UUUUURRRRGGGGHHH

J has woken up this morining and feels really poorly.  Bad abdo pain, vomiting and dry retching.  We don't have a BP machine but her pulse rate has varied between 104 and 136.   She had a BM on Tuesday so don't think she's obstructed.

NO news from hospital about MRE.  I am guessing that they don't want to fund it!  Really beginning to loose the plot.  Will keep ringing nurse.


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## Sascot

Might be time to take that trip to the other A&E.  Maybe a fresh set of eyes will help, at least another A&E trip might speed up other things like the second opinion.  I truly wish they would do something else to help her - now!


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## Niks

Yep, think that's where we are heading...  Was so hoping on getting MRE done soon, but how long do you wait!


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## upsetmom

How's J ? 
Did you end up going to another A&E ?


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## Niks

No!  She doesn't feel that she is as poorly as the last times she was admitted, mainly because she knows that she has been to the toilet in the last few days and not obstructed.

She doesn't want to go and not be taken seriously.

I think bad experiences at hospitals have a long term affect.

She will go though, when she really can't stand it anymore.

STILL nothing from our hospital!


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## Sascot

Keep nagging them.  When I was desperately waiting for an appointment for Amy last year, I phoned the MRI department and practically begged the appointment lady for any cancellations.  If you can get a secretary on your side (with your mobile number next to her phone), they can sometimes push things on and also make you her first thought if a cancellation comes in.


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## Niks

Finally heard from nurse. MRE not going to be done as they don't think she'll retain the fluid.  Oh so NOW he believes she's vomiting everything! 

He wants to re do CT scan and he has 'another' test which he's writing to me about!!! She couldn't tell me what. Very bizarre.


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## izzi'smom

Two things...
First, thickening is often inflammation...
also, has he considered giving an anti-nausea med to help her keep the MRE contrast down? I don't understand why he'll do a CT but not an MRI (both require contrast for optimal visualization of the intestines(?))


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## Niks

Last time she had CT she didn't have contrast?
She takes ondansetron before eating. Not that it does anything and she's had it by IV too, still doesn't really help. My guess is she isn't having contrast?

We have no confidence in this doctor. If she gets any worse taking her to another hospital. Have asked for a second opinion, but still waiting.


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## izzi'smom

I work in x-ray, and the best way to properly evaluate the colon is to fill it with contrast (it is similar to the surrounding soft tissues in density; being filled with contrast delineates the interior structure). 
Air (obstruction, ileus), stool (impaction) show up without contrast...
If she truly can't keep ANY contrast down I can see why they wouldn't give it to her; but then again, I would question repeat scans in a young female when the quality isn't the best. If she can keep some contrast down (would drinking it more slowly help?) it would add to the diagnostic quality of the study. 
I think you are on the right track with a second opinion...it never hurts!


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## Niks

Izzi's Mom - your kids are adorable!! Georgeous pics x

She isn't holding down anything...


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## izzi'smom

TY!
I don't understand why they aren't pushing to treat the vomiting. Her weight and nutrition will suffer until they do...??? Zofran worked quickly for Izz...hoping you get some better answers quickly. ((HUGS))


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## Sascot

Well at least they are doing something.  Although if he is going to write to you about the test it could take up to a week (these things never seem to get done quickly).  I believe they tend to just use contrast into the veins when doing a ct scan.  Never known anyone to actually get oral contrast except with an MRI


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## Niks

She has lost 35lb and still losing.  Yes at least doing something. Wondering if other test might be stomach emptying? If it is will show very poor and hopefully get them to look seriously as to why!!

Will keep on their case until done and if any worse will take her to A&E, for dehydration if nothing else.  She's been so tearful over last couple of weeks and it just isn't like her :frown:


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## Catherine

Our gi will not do CT on female patients Sarah's age due to radiation to the ovaries.

Which I find interesting as MRI with contrast are not a approved test for crohns in Australia so are not covered by health insurance (medicare).


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## Niks

What test would they do Catherine?? I don't know anymore what is best for her. We obviously need to know what's going on. 

Pretty sure pillcam would not go anywhere as she is right now :ack:


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## Catherine

Our does the mri we just have to pay for them.

But if the ct will give answers I go with.  Your girl is so sick you need to think of the here and now.

I know ct would be done in a emergency situations so the  gi think is not to use them for monitoring


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## DustyKat

I'm so sorry to hear this is continuing for your girl Niks, bless her.  

I hope she is able find peace and relief very soon. :hug: 

Dusty. xxx


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## Clash

Niks, I hope these tests will bring answers for your sweet girl and will lead to relief for her. Hugs!


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## Niks

Thank you everyone, I really hope she gets sorted out soon too, have got home from work, and she looks and feels dreadful.  

Her eyes are really bloodshot too, I guess just very tired and constant vomiting not helpful :eek2:

Hope you are all having a better weekend!

x


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## izzi'smom

Niks said:


> What test would they do Catherine?? I don't know anymore what is best for her. We obviously need to know what's going on.
> 
> Pretty sure pillcam would not go anywhere as she is right now :ack:


DD's peds GI has placed pillcams with a scope...I am going to guess he can bypass the belly.


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## Niks

They don't actually do the pillcam at our hospital!  Another reason to get her to another one.  

I just wish things would hurry up for her.  Vomiting up to 12 times day in day out, feeling so poorly and weak.  Yet she still doesn't feel that she is sick enough to go in to hospital.  I think she has just got used to feeling so bad and doesn't even remember what it feels like to feel well  

Feeling pretty useless right now.  Will be back on the phone to nurses first thing tomorrow morning.  Their hearts must sink when they hear my voice!!  :eek2:


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## izzi'smom

If they are any good at their job,their hearts don't sink...except at the thought that your dd is still suffering.  is she losing weight? This was always reason enough for us to go inpt


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## AZMOM

I second what Ang says.  Poor dear.....

I got over caring what they think when they hear my voice, read my email, getting out my list, etc.  yearsssss ago 

J.


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## Niks

Her pulse rate is 138! That's too high right!?

:eek2:

I think probably dehydration, she is trying very thinned down shakes, but not very successfully, I think she needs to go in for fluids.


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## Niks

She's losing about 2 lb a week still


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## dannysmom

Poor thing! (and you too!) I think she needs to be brought in ... you can try the emergency at that better hospital right? Dehydration raises heart rate .... and with the vomiting for days she must need some IV fluids/nutrition.


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## AZMOM

Niks I'm with Dannysmom.  Sounds like fluids are in order!

J.


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## Niks

dannysmom said:


> Poor thing! (and you too!) I think she needs to be brought in ... you can try the emergency at that better hospital right? Dehydration raises heart rate .... and with the vomiting for days she must need some IV fluids/nutrition.


She has vomited every day since Christmas!!  It just gets worse.  She was able to hold some food down, but not now.

Her Dad has picked her up!  

Have said the same, we should go to hospital, she is not having any of it.  Just hope her Dad will be able talk some sense into her!


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## izzi'smom

Agreed...hope you can do some convincing...she belongs in the hospital  Hopefully SOMEONE will listen.


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## lukefarrell

Get her to the hospital! sounds like its been going on too long and she is severely dehydrated


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## Dexky

Niks, I'm no expert (at anything) but I think the constant vomiting can cause some serious esophogeal problems on its own let alone the lack of fluid and nutrition she must be experiencing.  I think it may be time to conk her over the head and drag to the er!!  May be a good job for dad!!  Good luck!


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## my little penguin

I agree - ER time
Vomiting  ( Constant) potentially can put you at risk for alot of things in the esophagus
http://www.medicinenet.com/vomiting_blood/symptoms.htm
http://www.umm.edu/altmed/articles/gastroesophageal-reflux-000068.htm


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## upsetmom

I agree with everyone she needs to be in hospital.


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## CarolinAlaska

Niks, maybe your daughter needs you and her dad to intervene for her.  Sounds like she's given up.  Regarding the MRE:  I've heard of others on her who had an NJ tube placed for the contrast.  Nausea/vomiting shouldn't be a stopper.  Why isn't her GI advocating any solutions instead of leaving her to linger a slow death by starvation?  She absolutely needs to be taken out from his care and brought to the other hospital to start afresh, and right away.  The red eyes could also be inflammation from Crohn's (even if they are in denial as to that being the cause!)  If she isn't hugely better today, call her dad today and both of you team up together to take her, whether she likes it or not.  She'll appreciate it later.  She can't go on like this.


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## Crohn's Mom

HI Niks...coming in late here, but jumping on the bandwagon of everyone who's saying she needs to be admitted ! If for nothing else, dehydration :hug:

I hope she gets some relief soon !


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## CarolinAlaska

Niks, also the NJ tube can be left in for enteral nutrition...


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## Catherine

Niks  

I think she needs her mommy now.   Tell her we are going to hospital now and head out to the car.  Hopefully she will follow like my daughter telling why me she doesnot need hospital and how they didn't do everything last time.

Some how you can tell even with them saying no that they just need you to make the decision and they will follow your led.


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## Niks

Her Dad took her up to our hospital!  They saw a Doctor who gave her a jab for sickness.  He said hopefully that will work long enough for her to rehydrate herself.  It didn't work at all!

He looked up her notes and said 'take her to Oxford, the Consultant she is under is clutching at straws'!!!  OMG, for a Doctor there to say that.  He suggests that we go straight to GP in the morning.  He was in two minds to admit her but thinks she will be better in Oxford.  We are still waiting for an 'urgent' second appointment.  :eek2:  

She is convinced it will be better if he is referred rather than us just turn up at A&E.    UUUURRRRRGGGGHHHH.. I just think we should go now, she is having none of it.  If only she'd just gone there tonight instead!  :angry-banghead:


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## Niks

my little penguin said:


> I agree - ER time
> Vomiting  ( Constant) potentially can put you at risk for alot of things in the esophagus
> http://www.medicinenet.com/vomiting_blood/symptoms.htm
> http://www.umm.edu/altmed/articles/gastroesophageal-reflux-000068.htm


Thank you MLP, this sounds exactly what is going on with her xx

Carol - I didn't know that red eyes were a symptom!  Thanks for that too xx


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## Catherine

Good luck with the GP tomorrow.

At least you and her Dad are on the same page.

Can you and Dad take her to Oxford together?


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## Niks

Maybe we could both take her. Will see what happens in the morning.

Have been searching internet and found urgent referral fax number for Oxford gastro team, will take that to GP, along with all our mobile numbers, so they can contact us if there's a cancellation.

It's nearly 4.30am. Haven't got a wink of sleep yet, everything going round and round in my head. 

She sobbed her heart out last night, she has dark circles under her eyes, her skin has broken out badly with acne, which she's never had before.  She hurts all over, everywhere aches.  With constant vomiting she is just exhausted and so fed up.  She thinks that 'no one' will do anything so what's the point.  

Battle gear on for GP tomorrow! Enough already.


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## upsetmom

Good luck with the appointment.

My daughter was vomiting 1 day and i got stressed so can't even imagine how you feel....:hug:


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## Sascot

Sending battle vibes to you!  The GP should in theory be able to phone Oxford directly and ask for immediate admittance to hospital.  Or at least ask to go to their acute assessment unit.  Once there they should be able to page the on-call GI.  If they do nothing else they should at least give her the NG tube and get some nutrition into her while they figure stuff out!!  Good luck


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## Niks

thanks Sascot, I hope you're right! I am not expecting anything that quick but here's hoping x


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## DustyKat

Good luck Niks! I hope the GP gets you to Oxford ASAP and your daughter gets solid answers and relief! :goodluck::goodluck::goodluck: 

Sending you loads of love, luck and well wishes...:heart: 

Dusty. xxx


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## izzi'smom

I am relieved that she went and have my fingers Crosse d that you will get in at the new place super quickly!!!!!! Sending :heart:


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## dannysmom

I am hoping you go to Oxford today ... with or without the GP referral.  I am so glad you got great advice from the doctor at emergency.


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## Clash

Hoping she gets to go to Oxford to be seen today!! Poor girl, it is so hard when they stop trusting that anyone can help them, it has to be so scary for you and your baby. I hope the GP appt goes well and you get the referral and all she needs!


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## CarolinAlaska

Niks, I was thinking about your daughter, and I'm wondering if her stool was ever tested for C-diff?  I know she has all kinds of stools, not just diarrhea.  C-diff can cause vomiting too and it can be hard to treat...


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## Jmrogers4

Niks
Hoping you are Oxford right now and finally getting some answers and your daughter some relief.


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## Niks

Carol, I really don't know!! 

We went to GP who sent an urgent referral by fax.  She went off to work. Had a call from her manager saying she'd collapsed. She wanted to call an ambulance but I persuaded them to hang on. Picked her up. She's now in Oxford A&E.. Not a happy bunny but she's there!!! 

Will let you all know what happens x


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## CarolinAlaska

I'm so glad she is where someone might open their eyes and take a good look at her!  Bring a picture of what she looks like healthy.  That will get their attention too.  I hope things turn around for her soon.  Let us know.  She's in my prayers!


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## Catherine

Niks

Not glad she collapsed, but glad she is at Oxford.  Did you get a copy of the urgent referral fax.  If so it may be something to give the A&E doctor.


Wishing you all the best.  Remember no matter what she says, you and her work believe she should be in hospital.

Think of you and your family.


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## Jmrogers4

Well said Catherine.
Collapsing at work equals hospital.  Hope thing really start moving along now.


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## Sascot

Wishing you luck!  Hope they do something asap


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## my little penguin

Hugs
Hope things move in the right direction


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## izzi'smom

Hate the way it had to happen, but glad to hear she's there...best of luck!!


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## Tink572

Sounds like she is right where she needs to be. Hope she can get some answers and much needed relief.


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## upsetmom

:ghug:...I hope they finally do something


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## Niks

Just home, Jaime in Emergency Assessment.  Has had bloods and xray, they were all okay and because they were it made her cry, saying that no one will believe her and she just wants to go home.  

Also IV made her cry, her veins are just so small and collapse so easily.  They struggled to get bloods, and the IV fluid and pain relief was really hurting, has been slowed right down and she seems better with it.

She has seen several Doctors, ALL of them have asked if she has had MRI/E and are pretty shocked that she hasn't two have asked if she has had the pillcam....  Errrr NO!

One lovely Doctor saw she was upset and came over, he explained that a lot of people that have IBD have normal results.  It doesn't mean that she's well!!!  OMG that is the first time a Doctor has said that to her.  THANK GOD at last!  One Doctor asked her when was the last meal she'd eaten that she'd kept down.  We really couldn't remember!! 

The Gastro Team are seeing her first thing in the morning.  I intend to be there!  It takes about an hour and 10 mins to get there, but if early at least there won't be any traffic.

Anyway thank you all you lovely people for your support, encouragement and advice!  I really think you all helped us make the right decision for Jaime, and I hope now that they can finally help her!

:heart::heart::heart:


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## my little penguin

Sooooo glad they are finally looking


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## Farmwife

YA! All it takes is one doc to listen. GOOD FOR HIM! I hope you get answers soon. We'll all be waiting! HUGS


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## dannysmom

Thinking of you and so hoping they figure out how to help her!!


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## Clash

So glad they are listening and hopefully giving her the comfort she needs. Poor thing to cry over normal results, poor sweet baby. I know you are probably completely worn out, I hope you get some rest tonight. I hope they figure things out quickly so that she can have some relief.


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## izzi'smom

Thinking of you :heart:


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## Catherine

Thinking of your sweet girl.


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## Jmrogers4

Thinking of you and hope you are getting some rest.  Glad a doctor is finally listening to her


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## CarolinAlaska

Praise God for doctors who will listen and help!  I'm so glad she is in good hands!  It sounds like this place isn't convenient, but I'm so glad she is there!  I hope the docs don't try to send her back locally.  If they do - fight it with all you've got!  I had tears in my eyes when I read that Jaime was sad that her labs were normal.  I'm so glad that someone came and reassured her that she isn't going to be passed over again.  I'm glad she's got some fluid going in, even if it is at a reduced rate.  I hope you can get some good rest tonight too.


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## Kimberly27

Thank goodness someone is finally listening!  What a weight off your heart!  

When you say you're at the Oxford A&E, does that mean you're at the Oxford University Hospital?  

Kimberly


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## Niks

Yes Kimberly 

It's  John Radcliffe, which is Oxford University Hospital.

Thanks everyone, heading back soon! X


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## Niks

Unsurprisingly Jaime's bp and sugar levels are through her boots!  They gave her Lucozade to try and help sugar levels, she promptly vomited! People dashing round after her, finally she has people sitting up and listening!!


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## Devynnsmom

Niks, I am SO glad they are finally listening!! ((((((hugs))))) sorry it took her collapsing for someone to listen.


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## Mylittlesunshine

Hi niks sorry I'm late catching up x
How's Jamie doing now?
How are you ? 
At least she is in the best place 
And I pray you get some answers 
Love n hugs to you both x


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## Niks

J still having trouble with IV, they're going to put a new one in.  We've had a couple of scary moments. After one of her IV drugs she suddenly couldn't see.. She was in major panic. Sight came back after 20mins.  

She collapsed too and had nurses running everywhere.

Gastro team came this morning, he is starting from scratch and doesn't believe coeliac diagnosis. If no better by tomorrow putting tube in bypassing stomach

Should know tomorrow what tests and when.. She's really not well but at least someone is trying to do something now!!


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## Jmrogers4

So glad she is finally getting some help and sounds like a smart doctor to start from scratch.  Praying and thinking of you both


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## Kimberly27

Thank goodness for university hospitals!  I'm so glad you're under excellent care!  We are all with you in spirit.  

Kimberly


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## lukefarrell

Niks - the drug they administer where she couldn't see is most likely called cyclizine - it's an anti sickness drug that causes me to practically lose my eyesight and makes me go completely loopy or 'high' for about 25 mins. Although it does stop the nausea, there are other anti sickness drugs available so try and remember to mention this to the doctors the next time they are prescribing or admininstering anti sickness


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## Niks

She's allergic to cyclozine, she doesn't have it. It was hydrocortisone.

They are testing for Addison Disease. Know nothing about it, but if that is problem it is apparently easily treated!!


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## Jmrogers4

Just had to google that, had never heard of it.  Symptoms sure seem to fit.  Hope you get answers quickly.


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## lukefarrell

Good luck!


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## my little penguin

Fingers crossed


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## Catherine

Thinking of you all


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## dannysmom

Danny was give the basic testing for Addison's disease ... but they came back normal enough. I wanted some extended testing done (given Addison's causes elevated sweat tests and his GI symptoms are still unexplained) ... but the endocrine department would not do.  I am really curious whats tests they will run. 
Good luck!!


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## Sascot

Hoorah for them finally taking her/you seriously!!  Hope they get somewhere soon!  Thinking of you both


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## fosterschick

Hi , god bless ur daughter and u , all the worry and stress is awful , I don't know if this is any use , but I got a little fed up of ' normal ' test results and comments , so I paid 50 to have all my notes and scan pictures sent to me, u can do this in any nhs hosp , this proved worthwhile for me as my new gi is looking very hard into my case xx


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## CarolinAlaska

I don't know whether to be happy or sad that she is having abnormal test results now.  Happy that they're paying attention, but sad that she had to get so bad to get them to pay attention .  I think the tube to bypass her stomach is a great idea.  That may be the way to get the MRE as well so they can give contrast through that.  Any talk of a PICC line to help give her fluids/meds since her veins are so bad right now?  I'm so glad she is getting help, and I hope the problem becomes very evident.


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## Niks

dannysmom said:


> Danny was give the basic testing for Addison's disease ... but they came back normal enough. I wanted some extended testing done (given Addison's causes elevated sweat tests and his GI symptoms are still unexplained) ... but the endocrine department would not do.  I am really curious whats tests they will run.
> Good luck!!


Jeanne, as far as I'm aware it is just bloods??  Will check tomorrow if I can.

Have found out that Jaime's bloods had elevated potassium levels and low iron!!!  That is not normal!!!  Another GRRRRR.  Don't know numbers!

Her blood sugars were falling again this evening so they have swapped saline for glucose, seems to have done the trick!!


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## Niks

Carol, no one has said about a PICC line, but they have managed to get another cannula in her other hand, she seems to be coping better with fluids through one and meds through the other.

Hopefully we will know a little more tomorrow.

Thank you all for your support x


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## Niks

fosterschick said:


> Hi , god bless ur daughter and u , all the worry and stress is awful , I don't know if this is any use , but I got a little fed up of ' normal ' test results and comments , so I paid 50 to have all my notes and scan pictures sent to me, u can do this in any nhs hosp , this proved worthwhile for me as my new gi is looking very hard into my case xx


This is definitely worth looking at!!!  Thank you for this x


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## Niks

Jeanne - check this out x

http://www.nhs.uk/Conditions/Addisons-disease/Pages/Diagnosis.aspx


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## Farmwife

Thinking of you both!:hug:


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## Sascot

Good luck for today!


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## Niks

They are redoing bloods today. J's potassium was 6.8 on Monday. I don't really know what they are supposed to be! Monitoring 24 hours to see if anything stays down. keeping an eye on blood sugars.

they want to stabilize her.  Aiming to re do colonoscopy early next week.


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## lukefarrell

Niks I think normal potassium levels are between 3.5 and 5.0 and as far as I know or have been told in the past by Docs its considered dangerous when levels are above 6.5 

They will hopefully be giving her potassium through IV drip


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## Niks

Thanks Luke. They have put potassium up by IV. Was wondering!! X


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## CarolinAlaska

Why would they give potassium if it is already high?


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## Niks

I don't know!! Will check but would it be to counteract?? Am not at hospital yet, will find out


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## Niks

She has potassium chloride and sodium chloride IV.  The nurse has assured me that is right for high potassium !!


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## Tesscorm

Niks, just catching up now   I can't believe what you and your baby have been through! :ghug:  I'm so sorry that she's gotten to this point but am so glad that she is finally being looked after properly!

She is so lucky to have you - you have been incredible for her!

Lots, lots of hugs!!!! :ghug: :ghug:


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## Niks

Thanks Tess! You're very kind...

Hopefully we will finally work out what is going on!! One of the gastro team thinks her stomach may not be working at all and possibly food that is getting through is literally falling through!! :eek2:

That doesn't sound great. Not sure how they'd sort it out!! Hoping he's wrong on that!!


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## my little penguin

Gastroparesis 


> Gastroparesis diabeticorum; Delayed gastric emptying
> Last reviewed: October 8, 2012.
> Gastroparesis is a condition that reduces the ability of the stomach to empty its contents. It does not involve a blockage (obstruction).


From:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001342/


----------



## Sascot

So glad they are keeping her in and helping her at last.  I have been worrying about it all the way up in Scotland - was even ranting to my mom about the bad treatment your poor girl has had!


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## Kimberly27

When this is all settled, those jerks at the other hospital need a lashing from their boss, and a lesson on diagnosing whatever her condition is!

I hope you get the best possible outcomes.  Hang in there.

Kimberly


----------



## CarolinAlaska

I'm so relieved that she is in good hands now.  It makes me want to cry with relief!  I'm sorry she isn't completely better yet, but so glad that she isn't being blown off anymore and she is in capable hands!


----------



## Crohn's Mom

Thinking if you both Niks! 
I'm so glad she's finally getting some help and paying attention !
That has to be hopefully helping her spirit a bit, now that they finally believe her! 
:hug:


----------



## Niks

She had another really horrible turn this evening, where she felt she could breathe and had really tight chest.  Lots of running around from nurses and doctors paged!  Calmed down after 30 mins but pretty scary for her!

Her cortisol levels are 'really high' didn't give me numbers again!!

They are still putting IV potassium chloride through and have changed both her IV's.  New ones seem more comfortable.

No food at all kept down.  One Doctor told her earlier that it is possible her stomach isn't working at all and the only food that is going through her is 'dropping down'!  This sounds difficult to treat!!!

The plan for tomorrow is to insert feeding tube and at the same time do a camera test into stomach.

Thank you all for your kind words, support and suggestions!  And yes our local hospital are going to get another letter, to add the the previous one about her appauling (lack of) treatment!!


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## Clash

Awww...Niks I hope they can get to the bottom of everything quickly and get her to feeling better. I am so glad these docs are paying attention and on their toes to help your sweet baby!!! Hope feeding tube and stomach test goes well and a peaceful night, also!!


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## CarolinAlaska

I hope you are all getting a good rest and that answers can be found soon.  It sounds like Jaime's stomach works fine backwards (all the vomitting), perhaps it is just flipped upsidedown?!  Just kidding.  I hope she starts feeling better quickly.


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## Sascot

Glad you will be writing another letter, I would go so far as to send a copy to the health board as well.  That GI you saw could do with being told off properly as well.
Hope she doesn't have any more funny turns today.  Glad the new IV's are working better.


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## Niks

They think the episode J had where she couldn't see was a mild stroke!!! Scary!


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## fosterschick

God bless u and ur girl , let's hope they can sort her , least these are sitting up and taking action x crossing all for u x


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## Niks

my little penguin said:


> Gastroparesis
> 
> 
> From:
> http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001342/


Thanks for this MLP. Does anyone know what happens when so severe nothing going through? PEG feeding straight to intestine?? :-/... Let's hope it doesn't come to that.


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## Farmwife

I know it sound horrible Niks but Grace might get a g-tube in the stomach (I hope not) but once you see her start to put on weight and start to heal it will be worth it.
Have you asked what they can do to get the stomach "working" properly?


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## Niks

That's what they are trying to work out!! They've told her she needs to stay in at least two weeks, possibly longer because nothing is straight forward.. Just glad they're trying!!


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## Tesscorm

It really sounds like they are working hard to figure out what's going on and what needs to be done!  I hope the worst is absolutely behind you and J.  It's taken her a while to get to this point, so might be a bit of time before she's well but, hopefully, she's very much on the road to recovery!!! :ghug: :ghug:


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## x0lou0x

I've been following all your posts Nik and just want to say I'm glad your daughter is finally getting the help she needs I can't believe it had to get to this point for her to be seen as a priority! I really hope you get some answers soon, thinking of you both


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## Kimberly27

Did they do the stomach scope yet?  Have they seen the inside and the lining?

Kimberly


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## Niks

No scope yet! They want top consultant to do it!! Looking like Monday now. She has had enemas day and night since being here and although not her favourite, seems to be getting her moving!  She only ever had one at other hospital..

I got potassium wrong.. Her levels were low!! So not sure where she got 6.8 from!!  Her vitamin levels were really low too, so having a neon green cocktail put through IV to supplement! She needs 10 days worth.  So you were right Carol, think we had crossed wires with nurse.

She looks so much better!!! she even held down a little breakfast! It's a start!


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## lukefarrell

I have also been following the posts Niks and this looks like the first bit of progress so far. Brilliant and may it continue until your daughter is fully fit again


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## Kimberly27

I'm sure waiting until Monday is agony, but I'd say the top consult at Oxford must be a pretty smart man/woman!  I'm glad you're getting the best!

Kimberly


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## Sascot

Such a relief she is in the right place to get help.  Glad she is looking a little better.  After all the rubbish treatment before, getting the top guy sounds like a good idea!


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## izzi'smom

Thinking of you guys. Glad she is finally getting some help. : heart:


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## kimmidwife

Hi Niks,
I just had a chance to read through and catch up. I am so crazy busy lately that I barely have time to get on the computer. I am so glad she is finally being taken care of.
I thought about maybe her having gastroparesis. Whatever she has hopefully they can figure it out quick and get her on the road to recovery! I hope you send a very strong letter to that other hospital. It is unacceptable in this day and age that they would treat someone this badly.


----------



## Devynnsmom

I'm so glad someone is finally working with you!!


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## dannysmom

Things are sounding better! Hope she continues to improve and so glad they are doing their best to figure things out!


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## Farmwife

I so glad she's getting the help she deserves.:dance:


I started a thread for get well wishes for J. 
Please feel free to leave a message and 
hopefully this will brighten her day a bit.:hug:
http://www.crohnsforum.com/showthread.php?p=610427#post610427


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## Dexky

Awesome Niks!


----------



## CarolinAlaska

Hi Niks!

On your question regarding what if the stomach doesn't start working again, what do they do...  I don't know that I've ever heard of a stomach completely stop working.  I think there is a lot of testing that will take place in the next two weeks to figure out what is actually happening.  Perhaps her stomach is just sick right now and has been sick and malnourished for so long that it needs a rest and medical attention, then will start working right again.  

That said, there is something called a J-tube that is like a G-tube but it goes into the jejunum instead of the stomach.  This would make more sense if the stomach isn't working right.  There is also an NJ tube that goes down to the jejunum through the nose and stomach that is more temporary.  

Have they ruled out small bowel obstruction?  Don't believe everything that the residents and junior docs tell you, wait to hear it straight from the big guys.  You might hear lots of theories before they get down to the real answers after they do the testing.

I'm so glad to hear she is improving a little.  I hope breakfast went through...


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## Niks

Carol - I know. Think some doctors think out loud. Am more encouraged that she did hold down a few mouthfuls of breakfast yesterday, but that was all! She has held down the odd small thing over last few months.  She didn't seem to feel so bad yesterday although her pain was worse.

She is being given the enemas as she was very backed up. She can't believe that she's going so much after nothing for so long!! 

She's nil by mouth right now, just in case he can fit her in today. Let's hope so, but if not will be Monday


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## Lewiss mum

*Who is Nike lol sorry ink*

Hey Nik and Jamie , I so hope they scope he ASAP and then at least u can get some answers as to what's going g on I the I side , she will get get just stay positive it's horrible what I've had to go through a dim so glad the docs are taking note now as to how sick she has been ,Lordy doctors make me so mad sometimes . Sending hugs to u both and Lewis says hi Jamie lol think he has a little crush he's like that with my friend she's blonde and gorgeous to .xxxxx


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## Mylittlesunshine

Hi niks 
Just checking in to see how Jamie was doing? 
Any news on scope . 
I hope she is feeling abit better x hugs x


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## fosterschick

Oooh u and ur poor girl , really sound like she getting somewhere now , fingers crossed for u all t time x


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## Niks

Jaime didn't have scope today!  The consultant came to see her and is going to leave it 'til next Wednesday!!!  Poor Jaime, not a happy bunny, she was not expecting to even be there next Wednesday.  Had some truamatic moments, when she begged to go home, sobbing her heart out!!

He thinks where she has been so backed up it is going to take some time to clear her out and wants to do this before doing any procedure!

On the plus side she at a little lunch and kept it down, and a little dinner too!!

Not a huge amount but has not been sick at all today!  I can't even remember when that happened!  :dance:

I guess clearing out her bowels is really helping!!   It could be that simple!  I guess  they have to work out why her bowels aren't moving properly though..

Feeling more positive that it is something that can be sorted fairly easily.  She is still having enemas twice a day.  She is having more abdo pain, maybe just things moving through??


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## Tink572

How wonderful that she is keeping some food down.  Hate to hear she has to wait until Wednesday for the scope, but hopefully she will be good and clear by then.


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## my little penguin

Glad she is keeping down food
Sounds like you have a good plan plus waiting on the scope will let her body be more stable during the scope.


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## Crohn's Mom

I think that's good that they're waiting to do the scopes to make sure she's cleaned out.
But why are they letting her eat ? 
They could get her cleaned out so much faster with no food of course.

Either way, so happy she's finally getting some help ! :hug:


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## Dexky

Gee T!  You gonna starve the poor girl til next Wednesday?  

That's the most positive you've been in a while Niks!  Good to read that.  Hope it continues!


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## Niks

Jaime STILL hasn't been sick!!  So wish she'd had these enemas for a period of time before!

She has kept down breakfast for the third day!!  :dance:

I actually can't believe it :emot-waycool:

So probably not so much a problem with her stomach after all, it just didn't have anywhere to go because she's been so blocked up!

Anyone else have similar problems?  Wonder how she's got so blocked up and what could cause this??


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## Bubbly

So pleased to hear sickness has stopped and managing to keep food down.

Cant really answer about being blocked up, i am sure somebody will be along and be able to answer.

My son does suffer with constipation and currently on 6 x movicol a day to keep things going, and currently this seems to be working.

Hope she has a comfortable weekend and carries on feeling better, and that he gets the answers you need.

Take care both of you x


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## Farmwife

Grace same problem but not like J.

Grace would get so back up she would vomit bile.

Grace is on miralax and senakot to keep things moving. That's even with EEN.

I wonder if J has a mobilities problem. A part of her track has stopped working.
I'm sure the docs are going to look into that.

HUGS, I'm glad she's doing better.


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## my little penguin

Ds was blocked up - had chronic vomiting etc due to crohn's
Daily miralax for two years.
Once on the right meds - no more constipation


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## Niks

Doctor today was so happy with Jaime's progress!!  He has reduced enemas to once a day, and changed her to oral supplements (to trial), and trialling dropping IV glucose and saline.

The dietician has given her different build up drinks called fortisips.  They are much smaller and she has managed to keep one down today.  Think Ensures are just too much for her at the moment.

Has had a couple of wobbly moments when up on her feet, but generally seems to be doing well!


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## Farmwife

Ya, so glad to hear.

HUGS


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## Catherine

:dance:Glad to hear she on the improve:dance:


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## Tesscorm

Such great news!!! So glad to hear she's improving!!


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## CarolinAlaska

I'm glad things are moving and that she's keeping food down.  I'm sorry she is so unhappy about being there longer than she wanted.  Doesn't she see this as a way to get better so she can get beyond this point in her life?  I hope that now she is starting to improve that her outlook on being there is improving...  Hugs to you both.

PS I hope the food at this hospital is better than the one at the last hospital!


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## Crohn's Mom

So happy to hear things are improving ! 

I would think it makes sense now (looking back) that with her being so backed up with stool, that there was no where for the food that she tried to eat to go; hence the constant vomiting ! 
I'm just glad things are finally starting to get sorted and hopefully she will have some answers as to "why" very, very soon! 
Hang in there momma Niks, you're doing an awesome job supporting her !
Hope you are getting some rest :hug:


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## Niks

Carol - she does realise now. After seeing doc yesterday, when he was so happy with her.  He told her this was all really good, they now just need to work out why!! Jaime said to me that before, they would have just sent her home.. Well they did, without even getting this far!

And yes! She's actually enjoying food! No slop and no forgetting her. In fact the opposite -  they are constantly coming round asking if she wants anything else!

Crohn's Mom - agree.. Finally starting to piece together. How could anything go through her! So glad I listened to everyone and changed hospitals. Hate to think what state they would have let her get in in ours!! 

Thank you all for your good wishes xx. :ghug:


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## kimmidwife

Yay for good news!!! I am so happy to hear this I have been so worried for her. So nice you are finally in a place that cares. Hopefully they will find some answers for her quickly!


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## Clash

So glad to hear the good news!!! It is so great that she is enjoying food! I hope the get to the bottom of everything real soon!!


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## Devynnsmom

I'm so happy to read your updates! I hope she continues to improve and you get answers soon. You both must be exhausted.


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## Maree.

Thanks for the continued updated, loving reading these recent ones.  
I'm glad Jamie seems to have come to accept that staying a little longer in hospital to allow them to really get on top of the issues is a good thing and she's enjoying the food!  Fantastic.


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## Bubbly

Yipee, what great and positive news to hear xx


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## Mylittlesunshine

That's great news niks hope this is a turning point 
And good news keeps coming Hun x x


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## vtfamily

I really feel your angst!  I want to spit nails on your behalf!!!

First, I think the docs need to acknowledge that they may need to look further than Celiac's as a diagnosis.  My son had all of the classic symptoms of Celiac's and endend up having Crohn's Disease.  It took over a year for them to run all of tests to "rule things in/out" until they finally had the right dx and we could begin to move forward.

The vomiting blood is very concerning.  I would expect the doctors to be more concerned about her symptoms than what you have shared.  With Crohn's, the labs are nearly useless in determining/predicting flares or disease status.  If your doctor is relying solely on labs, FIND A NEW DOCTOR and quickly.

In my sons case, the MRE is really the only test that ever gives the doctor a good/true picture of what is going on inside his ileum and colon.  That said, I am a huge fan of the pill camera.  Not because the camera ever gave us the data the doctors were looking for, but because both times he swallowed the pill camera it got stuck.  When the camera is stuck, they HAVE TO go in to get it.  When the surgeons go in to get the camera, it's like magic...suddenly everything makes sense and the GI doc sheepishly has to come to you and explain how messed-up your child's insides are.  It's almost like an apology for not "getting it"  sooner.  Then the real magic happens...everyone (the GI doc, the surgeons, the pediatrician) understands the true severity and nature of your child's disease and the doors to better access to tests, meds, etc... open wide!  I truly believe that we would still be searching for answers (and looking in all of the wrong places), if it were not for that first pill camera getting caught in a section of strictures in the middle of my son's intestinal tract.

I'll be praying for both of you.  For peace, for health and for the doctors to have sensitivity and wisdom.

Best wishes for you and your daughter.
Cheryl


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## Sascot

So glad she is starting to do a bit better - what a difference it makes having the doctors listen to her/you and actually doing something!


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## Kimberly27

Whoo-hoo!

Kimberly


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## Trysha

Hi Niks
Sorry for all the problems, delays and outright negligence that you have had to face with your poor daughter.
It is possible for her to have a motility problem, hard to say until the appropriate investigations are completed.
She is in a very good hospital and they will be the ones who will find the answers.
It may take a little while yet, the GI team know what they are doing.
These investigations take their toll, hence the appearance of slowness.
Take heart from the headway already made.
Feel better soon
Hugs and best wishes
Trysha


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## Niks

Hi everyone

Had a very long day!  Poor Jaime been in agony today 

Been in a ball, trying to ease it but nothing helping.  Doctor has written her up 2 hourly oramorph on top of tramadol, buscapan and paracetamol..  But little relief poor thing.  She hasn't had this level of pain for a long time.  Maybe just things moving through her bowels and they're just not used to it anymore!!!

vtfamily - Thank you, I shall be praying for a MRE and Pillcam, they don't think that coeliacs is causing her symptoms, and not even sure if that diagnosis is solid! - She is now in a new hospital and yes her last GI was shocking!

Trysha - Thank you too, so glad she is in a hospital that know what they're doing!

Everyone else, thank you so much for your support xx

:hug:


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## Dexky

I hope you're right Niks and it resolves soon.  Things were going so well!


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## CarolinAlaska

Niks, I know that tramadol shares some opioid receptors and blocks some narcotics.  I'm not sure that tramadol may not be blocking her oramorph.  You may want to ask the doc about that...


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## Lewiss mum

hey niks i bet u feel like is one step forward nd 3 steps back . but keep stong they will find out whats causing this painand when they do at least they can start finding out whats wrong . ive been on oramorph amd tram and para it does cause constipation. ut if she was in pain before than thats not the cause as long as shes having something to help things move she.ll be fine i take tramadol everyday for athuritus in my spine and when u need it u need it . hope u get some answers todayxxx


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## Sascot

Well another week to hopefully get answers.  Always amazes me how hospitals virtually "shut down" at the weekend. Hope they get some of the tests organised asap now!


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## dannysmom

Is there a plan to ease off the food (solids) given her increase in pain? I am glad she is in there so they can see this all and so hope they can figure it out soon!


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## vtfamily

Niks,
What a journey! Once the new docs get to the bottom of the problem, I hope they take the time to counsel her old doctor about never allowing this to happen again!

Routing for both of you!  I hope your daughter will learn from your example (and this experience) to keep fighting and pushing until someone will listen and will do something meaningful on her behalf!!!!

When she is headed into recovery, I hope someone goes back to the old doctor and "update" him on her status (pointing our his errors).  He should not be allowed to do this to anyone else again!

Wishing you all the best,
Cheryl


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## Niks

Jeanne, her pain is apparently her bowel going into spasm! It has eased a few times today with continuous pain meds. Pretty much the same as yesterday. Potassium levels still really low so upping supplements.

The scopes she's having on Wednesday have already been done in Swindon, so not sure they'll find anything!! Think they will test until they do though.

Cheryl - her old doctor WILL be fully updated! Along with an update letter to go with our original complaint about him to PALS!  I have even received an e-mail from them saying that he would like to meet with Jaime and me when she is out of hospital!! Grrrrr she never wants to see him again!


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## Johnnysmom

So glad to here you are making progress and that you have finally found some doctors that are taking some action.  

I am also grateful you are making a complaint, you will hopefully save another family from dealing with that other Dr. !

I don't blame her for never wanting to see him again.:voodoo:


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## Kimberly27

Sounds like a "cover your ass" email from the doctor.

Kimberly


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## vtfamily

I know Jamie is far from well, but I hope she is at least feeling better because she has been heard, she is being taken seriously and real effort is being made to heal her body.


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## Lewiss mum

bloody docters they make you so mad dont they .lewis was given the wrong meds once god job i checked as the doc and pharmacy messed up i complained to the pct and my doc requested a meeting its to try and clear the watet so u dont make another complaint . he.ll just try and weedle his way out of it using big words and sayin she wasnt that sick at the time . x hope jamies feeling a bit better and shes not in as much pain big hugs .xx


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## vtfamily

Farmwife said:


> I know it sound horrible Niks but Grace might get a g-tube in the stomach (I hope not) but once you see her start to put on weight and start to heal it will be worth it.
> Have you asked what they can do to get the stomach "working" properly?


Farmwife,  My son had a GJ-tube put in last year.  It has been WONDERFUL.  He not only put on weight and got healthier, but it made it soooo much easier to administer contrast for CT/MRE scans and bowel cleanse prep for scopes.  It doesn't interfere with any of his normal activities, including swimming or summer camp.


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## Farmwife

Thanks vtfamily,
I have to tell you this so please don't freak out but....
You look JUST like my older sister. 
The first time I saw you avatar I almost screamed that my own sister wouldn't tell me what's going on with my nephew and when in sam hill did she move to California.:rof:

Good to know the g-tube is working so well. If you don't mind in the coming weeks I might e-mail you with some questions.:hug:


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## Niks

Jaime has scopes up and down tomorrow.

Consultant came to see her today, thinks she may have a narrowing somewhere as the last two days the enemas haven't produced anything!!

He wants to do an MRE as well and has put her as urgent on the list.  He won't do another CT scan because of her age.  I remember several of you saying this when her old GI said he couldn't do MRE and would only do another CT scan!  He said he couldn't do the MRE because of her vomiting.  The Consultant today said if she did vomit the contrast they would bypass stomach.  (Oh - got an appointment for a CT scan in Swindon for this Friday!!  lol, needless to say I have rang and cancelled!!)

The more that we hear in Oxford, the more we realise how bad her treatment and the GI there actually was!


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## Farmwife

This has been a long time coming.

I hope everyone that reads your and J's journey take too heart the fact that you don't give up. Keep pushing.

I'm so glad she's getting the care she needs.

HUGS


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## Niks

Thank you FW

When it comes to your kids health there is no other choice!!  It is just so great to have the support and the odd little push from you guys :tongue:


----------



## Kimberly27

It's nice to have a back-up plan in case Jaime vomits.  One less thing to worry about!  Thank goodness for Oxford!

Kimberly


----------



## Jmrogers4

So glad things are moving along and you are on your way to getting answers and Jamie feeling better.


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## dannysmom

So happy to hear the plans in place ... and so glad you are at Oxford!


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## kimmidwife

Niks,
 I am so sorry to hear she was feeling poorly again after that big improvement. But thank goodness you are in. Good place with her finally and they are listening and taking of her!!! Good luck with the scopes tomorrow. I will be checking for updates to hear how it went keep us posted when you can.


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## CarolinAlaska

I hope it goes well for her.  I'm so glad you are with this new medical team!


----------



## Lewiss mum

good luck today niks and jami be strong hopefully today i will have some answers and you can start to move forward . big hugs from up north .xx


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## Sascot

Just wanted to wish Jaime luck for her scopes! Glad they are doing the MRE as well.  Glad you got away from the other GI - wonder how many others are being treated as badly!  He definitely needed complaining about.


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## upsetmom

Good luck with the scopes.


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## Tink572

Good luck with the scopes!  Hope you get some much needed answers.


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## fosterschick

Ahh love ur really going through it , let's hope t scopes show something ( that sounds bad doesn't it ) I mean hope they find something that can be easy fixed and ur daughter and u can enjoy her teen yrs x god bless u x


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## Niks

Poor Jaime, just rang me, the Consultant has just been to see her and one of the pieces of machine is not working properly!!  She is nil by mouth, and now pretty unhappy.

He doesn't know when they can get it going, but he has found 'abnormalties' in her small bowel from the CT scan that the other hospital did. He has put her top of the list. Makes me so MAD!!!!!!  Why didn't the other GI see this???  :mad2:

He wants her on a low fibre diet?  Surely high fibre would get things moving more??

I really hope that they get the machines working as she is beginning to lose the plot!  Poor thing


----------



## Ands

Hope today goes as well as it can.  

We're in UK as well and have to travel just short of 2 hours for GI.  After poor local treatment, i wouldn't want it any other way now.  We understand the pressure it can put on other family members though.

You all have been so strong, hope diagnoses and treatment plan in place soon.

Xxx


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## Mylittlesunshine

Hi niks, I hope the scopes ok, and the find out
What has been causing all ur daughters health probs.
Please let us know how it goes.
Where all thinking of you both x x x


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## Farmwife

Are they thinking it's scare tissue? Strictures would defiantly cause what she's having. I'm also wondering that for Grace. She also has constipation and has vomited. But not like your girl. Hugs.


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## Mylittlesunshine

Aw niks I'm so sorry, I hope she gets 
The scope today. 
As for the other doctor missing abnormalities in 
Her small bowel that's truly makes me so mad
Good job you got a fresh pair of eyes that 
Spotted it. Poor girl she been though to much. 
Hugs to you and jaime x x x


----------



## Niks

Farmwife said:


> Are they thinking it's scare tissue? Strictures would defiantly cause what she's having. I'm also wondering that for Grace. She also has constipation and has vomited. But not like your girl. Hugs.


Not sure FW.  I think she is too upset to take it all in.  She had prepared for scopes today and now it may not happen!


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## Niks

Scopes delayed until Friday!!


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## Bubbly

Oh god, so sorry you have to wait even longer for scopes, so so frustrating for you both, will be thinking of you both over the next few days.

Regarding fibre, my son went on a low residue diet when he had his vomitting episodes before his surgery last year, and this included no fibre! It sounded strange to us, as he liked brown bread and all the other stuff full of fibre, so he changed over to white bread and cut the other fibre stuff, and he was much better for it, fibre is hard to digest, and tended to sit on him, these days he still has white bread and watches fibre intake.

Good luck and fingers crossed first on the list friday morning x


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## Tesscorm

Niks, so sorry that Jamie has to wait longer to get the scopes done!!!  OMG, it seems the poor girl has constant roadblocks in her way!  Sending lots of hugs to you and Jamie.

By the way, Stephen was also on a low residue diet for a few days while waiting for his scopes.


----------



## Jmrogers4

UGGH! so sorry you guys have to wait even longer.  I was hoping to pop on here this morning and see that scopes went well and you had some answers.  Hang in there, tell Jamie we are all thinking of her and sending her lots of hugs :ghug:


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## Devynnsmom

I'm so sorry  She (and you) must be so incredibly frustrated. Prayers that everything goes off without a hitch on Friday.


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## Sascot

What a shame.  Working herself up for scopes and not having it done.  The more you tell us about the old GI the more I wonder how he manages to stay employed!
When Andrew was first diagnosed I remember the GI telling us to limit fibre as well.  That's why we changed to white bread and pasta and I don't give him too much of bran cereals which he likes.


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## Johnnysmom

Tell her to hang in there Niks.  Sounds like you are on the right track now.

Is she feeling any better?  Are they able to control the vomiting or at least get her some nutrition?

((((((Hugs))))))


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## dannysmom

Sorry for the delay in the scopes. Hope Jamie can be made more comfortable.


----------



## Kimberly27

At least she's at the top of the list...

Hugs.

Kimberly


----------



## Niks

JohnnysMom - now that they have cleared her out with enemas she has stopped vomiting which is good, but the last 3 days the enemas haven't worked!! They think she has inflammation or a narrowing in small bowel that is stopping it moving down!! 

Hopefully we will know soon. She is still in pain and feels really bloated.

One of the nurses told her if she didn't get scoped on Friday, because they are unsure if consultant available to do it, will be Monday!!! Really hope she doesn't have to wait that long


----------



## kimmidwife

Oh my goodness Niks,
I can't believe this. How crazy. Keeping my fingers crossed they do it on Friday and don't have to wait until Monday. I can't believe they only had one machine and it was broken. That is so crazy. Sending hugs!


----------



## vtfamily

For what it's worth....
We've just been through a tough two month bout ourselves.  My son was in pain, couldn't eat much and wouldn't stay hooked-up to his GJ-tube for his elemental feeds.  The net result, was a huge drop in weight.  We know he has a few very bad strictures, that's why he's doing the tube feeds as a supplement to eating normally.  Anyway, I reached my limit, raised the white flag and surrendered to the fact that we needed to go a different route.  He had a PICC line put into his arm and we started IV TPN feeds.  The PICC line has been in for two weeks now.  We went to the doctor today and he has already GAINED 10 pounds!!  What a difference it has made bypass the digestive system and put nutrition straight into the veins.  We are running it at home overnight.  He is able to go to school and maintain his normal routine.

Niks...while they are trying to figure things out for Jamie, perhaps a PICC line is the way to go?  Keep the idea in your back pocket anyway!


----------



## Sascot

:voodoo: :ybatty: :facepalm:
Need I say more!


----------



## CarolinAlaska

Niks and Jaime, I'm sorry you've come up against another obstacle.  Prepping and then not being able to go through with it seems a terrible trick!  Come on docs!  One of you can do this girl's scopes!  I thought they moved her up in line!  Ugh!  <<<HUGS>>> I hope they get it done Friday (which I think is today for you, but still tomorrow for me!)


----------



## upsetmom

Hey Niks hows J doing?


----------



## izzi'smom

Thinking of you <3...sorry for the path you've been on lately, but hoping for more answers shortly for you. 
From what I remember low fiber is used when they suspect a stricture to avoid food getting stuck in a narrow passage. 
Hoping she gets scoped today...and PUSH for it, mama...maybe being the squeaky wheel will get you somewhere! Poor girl needs some type of answer, and soon!!


----------



## Lewiss mum

Thinking of you guys today , hope Jamie gets scoped and u get some answers, xxxx:ghug:


----------



## Tink572

Crossing my fingers for scopes today!


----------



## Niks

Scopes done! Haven't seen dr but biopsies taken. Don't think anything obvious. Didn't think there would be!! 

Just waiting to see next plan. Hoping to go home, she seems to think as long as we can do enemas at home she can come back for more tests! She has at least stopped vomiting!!


----------



## Niks

MRE booked for Monday, she's still trying to get out for weekend! We'll see huh!


----------



## Jmrogers4

Understand her wanting to go home but I would be afraid.  Glad scopes were done and she doesn't have to wait any longer for that.  Glad MRE is being done fairly quickly as well, poor girl but I'm sure this will give her and you some answers soon.


----------



## Devynnsmom

I'm so happy the scopes are done and the MRE is booked!! I agree with Jacqui though, I would be so afraid to have her home until this is all sorted out. She's been so sick. I hope things turn around quickly and you have answers AND she starts feeling better! (((((hugs)))))


----------



## kimmidwife

I am so happy to hear the Scopes were done and the MRE is booked.hopefully no more obstacle and finally some answers! hopefully a restful weekend for you both.I know being in the hospital stinks but at least she is finally bring cared for. tell Jaime we are thinking of her.


----------



## Niks

She's staying in, but allowed out for a few hours over the weekend! 

The doctor said that her original CT scan shows a 'tethered' bowel! Her old GI didn't spot this. It is where she has all her pain!! Has anyone heard of this??

Hopefully MRE will show more..


----------



## Farmwife

Well I glad she's staying and I'm glad she'll set out for awhile.

Have you asked the Doctors about the tethered bowel and what could be causing it?
It's one of those things you need to ask the doc and NOT look it up on-line because you just don't know at this point.

I'm sure if someone on here has had it they'll let you know.

HUGS


----------



## Niks

Yes FW doctors are uncertain right now. They are pretty sure the motility in her bowel is very poor, but just wondering if this could be why. Doctors very vague! Don't think it's a normal straight forward problem!!


----------



## Farmwife

Well from what I've seen (someone on here correct me if I'm wrong) on the Internet it  COULD be from liquid forming in the bowel that causes problems. AGAIN she has motility problems that would make sense. Keep in mind I'm just a farmwife not a doc.:smile:


----------



## fosterschick

getting somewhere , keep us posted and sending hugs your way x


----------



## Catherine

Tethered means joined.  I.can understand how that would cause pain as the bowel would not be able to move in the normal way.


----------



## Farmwife

I think Sascot daughter had kind of the same situation. I think it was her appendix the was adhered to her intestine. Was very painful and they removed it and now she's better, right Sascot?


----------



## Sascot

Yay for scopes being done!  Yes, Amy had to have her appendix detached from her bowel before they could remove it.  I would imagine anything joined/tethered to something it's not supposed to would have the potential to cause pain, especially over a long period of time.  Sounds like that GI missed alot of important stuff!


----------



## Niks

Her appendix got taken out a few years back when all this very first started!!  At least we don't have to worry about that.  She has resigned herself to staying for the weekend, but is clinging on to coming home on Monday after MRE.

My concern is her getting backed up again, at the moment she is having daily enemas, can we do that at home?  Over the last week she has only vomited twice!!  This is incredible, but don't want it all to go dreadfully wrong again.

If her bowel is tethered, can this be sorted out??  I have tried searching on the internet and I can't really work out anything, it seems really complicated.

:eek2:

They are really questioning Coeliac Diagnosis, but advised her for now to stay gluten free.


----------



## Farmwife

Niks,
Go up the the SEARCH at the top bar and type it in.


----------



## kimmidwife

Niks,
Out of curiosity did she have her appendix out and then all this started up? I am wondering if it could be related to adhesions which can occur from surgery. Kind of like Rowan ( queen gothels daughter) had all that trouble from.


----------



## Niks

She had the abdo pain, but none of the other sypmtoms.  They took out appendix and then investigated down the gynae route.  Nothing ever came up, but on one laparoscopy looking for endometriosis, they found that she had an imflammed bowel.

So I guess that was the start of what is going on now!


----------



## kimmidwife

Sounds like then part of the issue could be from adhesions. Hmm, curious and curiouser. Mention to the doctor on Monday if it could be from surgical adhesions.


----------



## Niks

kimmidwife said:


> Sounds like then part of the issue could be from adhesions. Hmm, curious and curiouser. Mention to the doctor on Monday if it could be from surgical adhesions.


Thank you!!  Will do xx


----------



## kimmidwife

No problem, hope you guys have a relaxing weekend!


----------



## kimmidwife

Niks,
Just found a link to an article which mentions that tethering can be caused by adhesions
http://www.medscape.com/viewarticle/464849_3


----------



## Tesscorm

I was thinking the exact same thing Kim...  that if her problems started after having her appendix removed, it could be adhesions causing some of her current pain.  Jamie may have had reason (pain) to remove her appendix but the issues that have followed may be related to adhesions.


----------



## CarolinAlaska

Hi Niks,

I am glad that they are finding these things in all the previous tests and you are not being sent home with more anti-sickness meds.  I'd want my daughter to stay and be thier top priority until you find answers.  Going home means standing in line again to get their attention!  Remind Jamie of that!  I know the hospital isn't fun, but it is so important for her right now!


----------



## vtfamily

Niks,  My first question was tethered to what?  I tried to help do some searching for you too.  Found something called Clinical Imaging of the Small Intestine.  It's a PDF file.  There is a good description of tethering of folds on page 542.  It also talks about strictures and adhesions and has a few images too.  Hope it is helpful: http://books.google.com/books?id=sO...CA#v=onepage&q=what is tethered bowel&f=false

Tell Jamie to try to be patient (While she's a patient...LOL).  It's not fun to spend so much time in the hospital, however leaving and then bouncing back into the hospital right away isn't any fun either.  It's much better to have your questions answered and allow the doctors to do a full investigation the first time.

Cheryl


----------



## Niks

She had her appendix removed through key hole, it was healthy and at the time didn't make any difference to the pain and sickness (although no where near as bad as she has recently had).  It just seemed to disappear, and came back from time to time for a month or two each time.  This time however it just hasn't gone!

I agree she needs to stay, and she is really happy that she is allowed out today for 5 whole hours!!  We are going to go and spend some time at her aunt's house who lives locally.

Thank you all for the links, suggestions and support!  :ghug:  It is worth checking out whether her previous op has anything to do with all of this too!

vtfamily - I got the impression that her bowel is tethered to itself, but will certainly check that.  It is just a shock when your GI tells you her CT scan is normal when someone else looks at it, it really isn't!


----------



## Sascot

Enjoy the free time!  The outside world seems so much better when you've been in hospital :smile:


----------



## DustyKat

Hey Niks...:hug: 

My goodness, what a ride you have had! :yfaint: 

I well understand Jamie's desire to be out of there, even a few hours will make the world of difference, believe you me!  

Just putting it out there...inflammation of the bowel also has the potential to cause tethering of bowel loops either to each other and/or to surrounding structures. The inflammatory process literally causes them to stick together (tethering). 

Good luck with the MRE! I hope you both get the answers you need...:heart: 

Dusty. xxx


----------



## dannysmom

Wow ... I am so glad you are getting answers. Good luck with the testing. I hope she enjoys her 5 hours out!


----------



## Tesscorm

Glad she stayed in for the weekend!  Enjoy your time out!!  Even only a few hours will make a huge difference!

:ghug:


----------



## Devynnsmom

Enjoy your time away from hosp


----------



## Niks

Jaime enjoyed going out today but was equally glad to get back for pain relief. She vomited once and had bad abdo pain!  :frown:

She felf better when I left, but keeps feeling really hot, even when it is really not very warm!!  She was stood by the window a lot to try and cool off.  The nurse checked her temperature 35.2!!  That seems really low?  Looking at all of her recorded temperatures they are all really low.  The highest is 36.4.  It is odd that she feels so hot and odd that her body temperature is so low.


----------



## CarolinAlaska

Hugs to Jaime.  I'm glad she got out, but also glad she's back in good hands while this gets sorted out...  Wierd about her temps.


----------



## kimmidwife

Glad she got to go out for a little bit but sorry she started feeling poorly again. Low body temperature can be caused by hypothyroidism. Has she had her thyroid checked? It can also be caused by low blood sugar which may make sense if she is vomiting and not keeping any food down she certainly may have low blood sugars.


----------



## DustyKat

So good to hear that Jamie had a good time out.  

Sorry I am out of sync with all this Niks but is Jamie still on Pred? If so it can mask a temperature and signs of infection. 

Thinking of you, :heart: 
Dusty. xxx


----------



## Niks

Dusty, they are reducing Pred.  She is on 20mg at the moment.  Nursing staff don't seem concerned about temperature though..  Maybe that's just her?

Kim, her vomiting is so much better, when she first was admitted her blood sugars were really low.  2.3..  I think they got that under control and not checking it now. 

xx


----------



## vtfamily

Niks,

You've done an AMAZING job with all of this!  Probably the best take away, is to know that when the doctors give you dumb answers in the future (and they will), trust your instincts and keep pushing for answers.

It seems like this disease always comes with news you never expected.  This week we were informed that my son has bile reflux.  Similar to acid reflux, but the bile isn't draining from the stomach or jejunum properly.  So now we have to determine if the bile reflux is a symptom or a cause.  Either way, it is not helping the Crohn's inflammation or ulcers at all!

We will continue to pray for you and Jamie...and the doctor's too.
Cheryl


----------



## dannysmom

Hi Niks -
Danny's temp is typically low and he is always hotter than others-  even as an infant he always kicked off his blanket. And when he was at his sickest, he was the hottest. He went a few years with only wearing shorts. I have no idea what it means.


----------



## QueenGothel

Just chiming in, trying to get caught up on this thread.  Niks sounds obstructive yes.  I see they scheduled her for a MRE.  Has she had a fluoroscopy done for upper GI and small bowel follow through.  This is usually the test that shows better that there is an obstruction and exactly where it is.  I hope you get this figured out soon.  I read the last portion of this.  Rowan had a very large obstruction and unfortunately this test (she had 4, 2 barium swallow and 2 enemas) were all inconclusive for her and it wasn't until they went in and explored that they found 3 obstructions.  Hopefully they can avoid this.  Adhesions can really be a bugger to deal with.  But I see she has had previous surgeries so I am thinking it could be very possible. 

Hugs to you both.


----------



## Sascot

Just wanted to wish you luck for tomorrow's test!


----------



## Niks

Thank you!  xx


----------



## Farmwife

I hope all goes well and will pray that answers will be found.:ghug:


----------



## CarolinAlaska

I hope there are no more delays for her tests!  Praying for all to go as planned!


----------



## Bubbly

Thinking of you both today and hope you get some answers xx


----------



## Dexky

What time are the scopes, Nik?  Good luck!!


----------



## Mylittlesunshine

Niks, tell Jamie good luck for today
Will be thinking of you both x x


----------



## Niks

Thank you everyone!! MRE booked for midday xx


----------



## QueenGothel

I hope all goes well and you get some much needed answers today!


----------



## Jmrogers4

Thinking of you both, hope all goes well today


----------



## Clash

Hope all goes well today and you get some answers, sending Hugs and support!


----------



## kimmidwife

Thinking of you hope all goes smoothly.


----------



## Devynnsmom

Thinking of you!


----------



## CarolinAlaska

Well...  Any :shifty:results yet?


----------



## Niks

Hmmmm - Good news is she is home!!  Very happy about that!  Has been discharged with a letter saying :  Diagnosis probable small bowel dysmobility but further investigations pending.

He told her that her MRE results were pretty good.  There are a couple of things but nothing to cause major concern!  What does that even mean!!!  :yrolleyes:

He thinks that the bowel tethering was probably down to her appendix being removed.  

She needs to stay on daily enemas to keep her moving!

He will look thoroughly at MRE and wants to see her in clinic on 2nd April..  So I don't really know what to think!!!  Not really any further forward, but he does sound like he wants to do further investigations.  Can she stay on enemas indefintitely?


----------



## Catherine

Niks
It took them number of opinions to work out what Sarah's MRE actually mean.   MRE take carefully reading. 

Sound like her MRE has been read to rule out the really bad things and now needs reading for the more subtle things.


----------



## Kimberly27

Niks,

When are you expecting to get the biopsy results?  

Here's to sleeping in your own bed!  Yeah!  Big hug!


Kimberly


----------



## kimmidwife

Niks,
So glad she is home. Like Catherine said sometimes the MRE has to be reviewed carefully to look for more subtle things when the big bads have been ruled out. I am so glad it sounds like they will continue to investigate.
From what I have read I don't think it is healthy to be on enemas long term because it interferes with the ability of the gut to do what it is supposed to on its own:
http://drbenkim.com/articles-enema.htm
Remember though this is my opinion and i am not a GI doctor ( nor do I play one on TV, lol)
So of course it will depend on what your doctor says.


----------



## Niks

Am guessing biopsy results on 2nd!! Will get a whole list of questions for him on 2nd. Is only 2 weeks away..


----------



## Sascot

She must be happy being home!!  Hope she keeps well for the next couple of weeks and you get some more answers on the 2nd. Never dealt with enemas so not sure about that.


----------



## Dexky

Do they think they need to correct the tethering or do they not think it has anything to do with her ongoing issues?


----------



## Niks

He thinks it will sort itself out, but I need to talk to him about it!!


----------



## dannysmom

I am glad she is happy to be home. Is she still in pain? I really hope he has a plan ... after having trouble for years to think this will work itself out does not sound right to me.


----------



## QueenGothel

Both of you are probably sooo glad to be home. I am happy for you as well.

 I don't know if this helps you or if it will worry you more.  (Hoping for helping you)  In my experience with the "moment" they told me Rowan was having mobility issues.  All results pointed to mobility issues but her surgeon was not convinced.  All of Rowans tests we wrong and she in fact had large adhesions and that omentum was strangling her intestines like a giant spider weaving its way through different areas of her intestines. (In areas she shouldn't have had adhesions bc no surgery would have created them, like they magically appeared) 2 enema studies and 2 upper GIs with follow through were wrong.  Of course what is the chances this is happen to your girl as well.  I know it is slim... but I would like to remain optimistic that this is fixable.  The big factor that left Rowans surgeon not happy with the mobility issue diagnosis was that it came out of no where.  She was doing great then wham!... obstructions symptoms that seems like they lasted forever. Of course the only way to know is to go in and look and that never makes any of us more comfy bc the risk of more adhesions are so possible.  BUT Rowans surgeon said that they cannot rule it a mobility issue without doing an exploratory laparotomy and taking tissue and muscle samples to prove it.  Once they were inside and saw all of the adhesions and that crazy omentum and they never took the samples for testing.  Do you know how do they plan to prove it is a mobility issue?  Are they planning to send you to a mobility expert?  The place we were going to go was in Columbus OH. Here is the link

http://www.nationwidechildrens.org/motility-center


----------



## Tesscorm

Glad she is home!! 

Hoping you get more answers and she continues to feel better/improve at home! :ghug:


----------



## Niks

QueenGothel - thank you for all if this. I am pretty sceptical too.. I guess when we go on 2nd we can raise concerns 

Dannys Mom - agree.. Doesn't seem right does it!  

I don't know what his plans are. Really hope he has some good ideas!!


----------



## Devynnsmom

I'm glad they will be following up. I agree with everyone else, sounds like they have ruled out big things and need to dig a little deeper. I hope she is not in any pain. ((((hugs)))) hoping for an uneventful two weeks!


----------



## Niks

Have just got home, she has vomited 3 times today and looks dreadful 

Hopefully just a blip, but a bit of a shame considering she's not been sick for so long..  She said it isn't necessarily after food, she wonders if she's picked up a bit of a bug from hospital, I guess that is very possible!

She has been asked by Oxford to take part in an IBD study.  So has signed up for that.  I don't actually think that Motility problems are really IBD though?


----------



## Sascot

Well at least if they have her in the study it will keep her "in their radar".  Hope she hasn't picked a bug up!


----------



## kimmidwife

Hope she hasn't picked up a bug! Sending hugs and hoping she is feeling better.


----------



## CarolinAlaska

Maybe it was just the drive.  Jae was doing very well for 3-4 days then had to make the drive to Anchorage and stirred everything up again.  Perhaps now that Jamie is home things can settle down again


----------



## Dexky

Is she feeling better Niks?


----------



## Niks

No vomiting, a little shaky. She had pretty bad pain during night, but seems better this morning.  Hopefully turned the corner!


----------



## xmdmom

Regarding the low temperature, this can be seen with low body weight /malnutrition.   The body turns down the metabolism when it is starving, and pulse and temp are low.

Good luck to you! So hoping you get the answers you need!


----------



## Mylittlesunshine

Aw I hope things settle down Hun x 
At least she is at home in her own comforts. 
Hugs to you both x


----------



## Niks

xmdmom said:


> Regarding the low temperature, this can be seen with low body weight /malnutrition.   The body turns down the metabolism when it is starving, and pulse and temp are low.
> 
> Good luck to you! So hoping you get the answers you need!


This seems to make sense!  Her BP is low too xx


----------



## xmdmom

Yes bp can be quite low too with malnutrition. Do you know her current BMI or weight and height?  What nutrition (calories) is she getting in currently.
Doctors sometimes focus on the problem but neglect nutrition while they are figuring it out.  When the figuring it out takes a long time, it's essential to deal with the nutrition!


----------



## Niks

Her BMI at the moment is 16.9..  They are watching weight and topping up calories with Fortisip Compact, which she is tolerating at the moment!


----------



## Kimberly27

What about the Addison's investigation?  Do you have results on that yet?

Kimberly


----------



## Niks

Kimberly27 said:


> What about the Addison's investigation?  Do you have results on that yet?
> 
> Kimberly


This came back negative!


----------



## kimmidwife

Just wanted to check in and see how Jaime is doing.


----------



## Niks

She's in a fair bit of pain but coping pretty well. We are both just hanging on for 2nd to see what GI thinks and what he wants to do!! Xx


----------



## Kimberly27

Are you on their cancelation list so that you might be seen sooner?

Kimberly


----------



## Niks

I don't think she is, but going to call the hospital tomorrow.  She really is in a lot of pain :frown:


----------



## Clash

I'm sorry to hear she is in a lot of pain. Maybe you can get on the cancellation list if not is there any way to get word to the new team that she is experiencing a worsening of symptoms? ((HUGS))


----------



## Niks

I will call them in the morning.  Her vomiting is much better, but pain much worse!!  .  I don't really know what to think, but she is finding it really hard to manage on the meds she has at home x


----------



## Farmwife

Even IF this is a virus her poor body might not be able to fight it.
I'm glad your calling in the AM.


----------



## kimmidwife

i am sorry she is feeling poorly again. I hope they can find some answers. Hopefully when you call them tomorrow they will decide to get her in sooner.


----------



## Niks

Have called hospital, waiting for a call back!  Jaime also went to GP as had hardly any sleep due to pain last night .

GP said her stomach noises sounded very overactive and probably extremely crampy.  Do we ease off on laxatives and enemas?!  They are stopping the vomiting, so tricky. 

He has given her Oramorph to take.

Would be so good to have some good news for a change!


----------



## Niks

Jaime just spoke to the Registrar in Oxford.  He thinks that it is just a 'blip' and that her having overactive bowel sounds are good for her.  He wants to keep everything the same and is happy with the Oramorph her GP prescribed.

He thinks if she is still struggling over the weekend he may try Amitriptyline.  Have googled this and mostly used for depression/anxiety!  Although can be used for pain?  Anyone had any experience??


----------



## littlemissh

Amitriptylline low dose calms the bowel down and is often used in ibd where there is a degree of ibs, also works to calm pain nerve fibres down so can reduce pain.
The dose for anxiety/depression is about 8-10 times higher than the dose for bowel spasm.


----------



## Niks

littlemissh said:


> Amitriptylline low dose calms the bowel down and is often used in ibd where there is a degree of ibs, also works to calm pain nerve fibres down so can reduce pain.
> The dose for anxiety/depression is about 8-10 times higher than the dose for bowel spasm.


Thank you! Was a bit confused! X


----------



## my little penguin

^^ yeah that
DS tried it for a while- to try and "help"
but for him since his IBD wasn't under control- it wasn't strong enough to do anything.


----------



## Niks

my little penguin said:


> ^^ yeah that
> DS tried it for a while- to try and "help"
> but for him since his IBD wasn't under control- it wasn't strong enough to do anything.


Thanks MLP. I think she is so fed up with feeling so poorly she'll try anything! 

I really don't know how you all cope when your child is so poorly and so young! Hats off to you all xxx 

:ghug:


----------



## Sascot

Sorry to hear Jaime is not feeling great!  Amy tried Amitryptaline when she was having alot of pain.  I'm not sure it did alot, but then she is 10 so her dose was quite small.  It's worth a try!


----------



## DustyKat

I hope things start to settle for Jaime Niks, bless her. :hug: 

It is hard enough watching our children but seeing them is pain is just the pits.  If you can't get the pain under control and she starts vomiting again I would take her to casualty. This is only my personal experience but the four times I have taken my children to hospital it was for pain I could not control at home and they also started vomiting on three of those occasions, they were admitted each time. 

Sarah went undiagnosed for 18 months and had normal after normal result Niks. You are doing a great job hun, it is hard and it is heartbreaking, keep fighting while ever what you are seeing in front of you doesn't match what the docs are saying. 

Good luck!

Dusty. :heart:


----------



## Dexky

We're all hoping for good news for Jaime, Niks!  I hope they find the right answer for her soon.  They are missing something, somewhere!!


----------



## Farmwife

I agree with Dexky and Dusty (I know shocking) something is still brewing and like Dusty's girl it took awhile to find it.


----------



## Dexky

^^^And you don't want to find out the way she did!!!


----------



## DustyKat

Shut the hell up Dex! That is why I didn't mention it! :lol:


----------



## Niks

How!?! Intrigued now!!! Lol.

Thanks guys, hope they work it out soon!!


----------



## DustyKat

When Sarah's tests kept turning up negative results and she was just getting sicker and sicker it all culminated in her being admitted to hospital. Her bloods finally did show something and that was that she was septic. 

At this point IBD still wasn't on the radar but I had done some research over that weekend about Crohn's, thanks to a relative, and I told the paediatrician and surgeon I wasn't leaving until they proved to me it wasn't Crohn's. it was decided that they would take her for emergency surgery and remove her appendix to rule it out as a cause for her problems and then have a look around while they were in there. It was an extreme measure but I was more than happy for it to happen because I wasn't getting answers any other way. As it was, when they opened her up they found her bowel to be perforated and infarcted and she had pus throughout her abdominal cavity. She ended up having 68cm of small bowel resected and she came out with her diagnosis of Crohn's. It still breaks my heart to think about it, not only because of what she had had to endure but also because we very nearly lost her. 

Ironically her appendix ended up being perfectly normal. I was actually going to say something in my previous post but I didn't want to scare you as I still think Sarah was on the extreme end of things. The main lesson I think though is as I mentioned before...you know your daughter better than anyone, don't let anyone make you feel silly or stupid or a bother when you question them or don't agree with them. Something is going on with your daughter and just because the tests don't necessarily say it so, although she surely does have changes, her presentation is saying something very different. :hug:

Dusty. xxx


----------



## Johnnysmom

Good advice Dusty.
Hard to hear but it gives us all courage to keep pushing until we get some answers.  My situation was not nearly as severe but I had to push for more than a year to get my son treated.  I knew he was suffering and something was off.  If anything I beat myself up for not pushing sooner and hard enough!!  Keep at it NIks, you are doing a great job!!


----------



## Niks

That must have been a horrible time Dusty .  I'm not done fighting yet!! Hopefully we'll get there before it ever gets that bad.  

It is strangely reassuring to know that not everyone came to their diagnosis really easily.

Xx


----------



## dannysmom

Amytriptiline increased Danny's fatigue and did not help his ab pain. My older son tried it for different reasons and it constipated him. 

I lost track ... did they ever do the MRE?  I think it would be good if her small intestines were looked at - and I guess the pillcam is too risky since it is may be obstructed? (plus it will only show the inside). 

I hope the pain starts to settle!


----------



## QueenGothel

Our surgeon, though a surgeon really wants surgery to be the last resort unfortunately there is a time of suffering before they finally say ok enough is enough. Dusty I totally feel for you that last time Rowan was in the hospital and they kept saying it wasn't mechanical I knew in my heart and gut it was.  

Best of luck Niks!  Hope thing start to normalize all on its own!


----------



## CarolinAlaska

Hi Niks.  I'm sorry Jaime is experiencing so much pain now.  Amitryptiline can help with pain and with her not sleeping.  It can be sedating, so night-time dose might be just the thing for her.  If it is too sedating, she could use nortryptiline which is less sedating but works as well for pain.  I hope she starts feeling better soon.  How long before they feel she's had enough enemas and rule severe constipation out as the cause before they go after that area of adhesions?


----------



## kimmidwife

Caitlyn was on amitryptalline since after her surgery in 2010. It definitly helped with pain and helped her sleep. She was on 40 mg. she just finished weaning off it. We decided to try her without it and see how the pain is. It also really helped her with sleeping. It is important to know that you have to wean off it you just can't stop it. I hope it gives her some relief! Also it doesn't work instantly it takes time to start working. I hope they told you that.


----------



## vtfamily

I almost laugh out loud when Gus' lab results come back normal.  You'd think the docs would have figured out that when the children are in tremendous pain (or constantly vomiting, etc...) and the labs come back "normal," that they need to open their bag of tricks and try something less usual to find the right answers.

I'm convinced that this disease is all about layers.  There are always more layers that need to be tended to.  Case in point...Gus was experiencing excruciating pain and had an MRE in January.  It showed extensive inflammation.  It also indicated that a severe stricture, located at the terminal ileum, was no longer present.  To say that I was skeptical would be an under-statement.  He was hospitalized and put on gut rest.  We went home after about a week.  The pain was gone.  He was given his first Stelara injection.  The home protocol was to avoid eating and steroids.  Two weeks later, we were back in the hospital due to more pain.  This time the pain was due to his J-tube working its way up into his stomach.  Remove the J-tube, insert PICC line to begin TPN feeding, continue steroids.  Scope and GJ-tube replacement done about a week later, no surprises.  Gus finally attended seven consecutive days of school...the first time all quarter. Then, bam!  More severe pain brought us to the hospital again (third time in three months).  A new MRE revealed that the inflammation is better but that terminal ileum stricture they thought was gone/healed...yeah, it's still there.  Also a new stricture is forming.  We are looking at surgery to resect the terminal ileum and get a good look a the new stricture the first week of April.  That will make four week long hospital stays in as many months.  I'm ready for a real break!!

That said, I do think that it is not only possible, but probable, that something else will come to light after the stricture is removed.  It's just the nature of the beast.

Niks, just keep telling yourself it's a process.  Take each part as it comes.  You can prepare yourself for all of the "what if's" by doing research and talking to other moms.  Both will help you have better conversations with the doctors when the time comes.

So glad we all have each other to get through these tough times!!!


----------



## Niks

Thanks for all your input!

Vtfamily, thanks you for sharing some of your son's experiences.  I too am sceptical with tests done.

Her MRE apparently showed nothing serious, we are waiting for her clinic appointment on 2nd April.  

She said last night that she didn't know what was worse, persistant vomiting or severe pain.  Before her last hospital stay her pain was there, but nothing like she is getting now, but now her vomiting is much much less!!

She thought this morning that her bowel had 'exploded'.   Her breathing was extremely fast, she was clammy and pale.  She explained it like the pain was unbearable, bubbly, throbbing and squeazing, this is new.  I wonder if bowel has gone into spasm?  I calmed her and breathing down, she had oramorph and buscopan and it has settled a little, but still there.  She tried an enema, thinking maybe something was stuck, but nothing at all came out (third day).

AAARRRGGHHH, when is this poor girl going to get a break


----------



## DustyKat

Oh my Niks. :hug: 

I will be honest and say I don't like the sound of it at all. You and your daughter should not be dealing with that level of pain at home. If the pain is severe more more than 1 hour and/or new then I would be heading to the ER hun. 

What concerns me with our children is that they learn to live with chronic pain and so their pain threshold is often very high. When they do then complain of severe pain then you know it must be extreme.  

Dusty. xxx


----------



## Niks

I know Dusty 

She isn't as bad as first thing this morning, and is really resisting going back, she knows she'll be admitted again, she's barely been home a week.

I think she needs to go back, working on it!!

xx


----------



## DustyKat

I hear you and understand Niks, I have been there too. You are between the devil and deep blue sea on so many fronts. :hug: 

You are doing a wonderful job hun. Sending loads of love and luck your way that you are soon on your way back to hospital and your girl gets some much needed relief. I know it is a place that she doesn't want to be but the it is the best place for now so I hope she listens to you! Good luck! 

Dusty. xxx


----------



## Dexky

Also the fact that she really doesn't want to go back but still can't hide the severity of her pain indicates she really, really needs to go back!  

How much weight has she lost by now Niks?  She can't be more than a whisper!


----------



## Johnnysmom

If you call her dr and tell him how much pain she is in, what is their response?  

At some point I would think they would open her up, even if they thought they were only going to remove the appendix to see if that helped.  At least then they could get a good look around.  

You must be beyond frustrated!!


----------



## Niks

Her weight has stabalised since coming out of hospital last week, she hasn't lost any more!!  She weighs around 47kg/105lb, hopefully she will start gaining now the vomiting is more under control.  

She is adamant that she is feeling better now and not going to hospital.  She has agreed to call the GI tomorrow and describe the pain and severity that it was this morning.

Last week she got a call back from one of the Registrars that was looking after her on the ward, hopefully he will be able to call her back and advise.


----------



## fosterschick

God bless u both , she defo needs to go back , focus on t physical changes in her bowel , tethering , thickening dnt let em pass you off ur poor baby in too much pain for ami to solve , keep strong ur doing a marvellous job Xx


----------



## QueenGothel

Aww!  I had hoped of course this would clear on its own.  I really hope they can pinpoint where exactly the issue is.  We always tell our Doctors to expect the unexpected.  I wish this were not the case with my girl.  Now they do expect the unexpected.  Unfortunately this leaves them to guessing and their own gut feelings as well. Which as I am sure you know... Doctors and Surgeons like to do things based of facts and evidence.  They get just as frustrated as the rest of us.  Maybe explain this to her and remind her they want to help her feel better.  Needles, tests and surgeries are just sometimes what is needed to help them.  Reach deep into her socks an find the bravery you know she has in her.  She is so strong sometimes they need a reminder that they can do anything they focus on. I know you are tired as well and dreading this trip as much as she is.


----------



## Kimberly27

Niks,

You are doing a great job.  I'm sure you are exhausted.  Hugs.

I agree with Dusty.  Go to Oxford.  The "exploding gut" comment is worrisome.  I put off taking Reed to the ER when his appendix was ruptured because he said he could "push through the pain".  After it ruptured, the pain actually went down, so I thought things were getting better.  It had been ruptured for days before he had surgery!  I still feel bad about not following my instincts.  It took eight weeks of strong antibiotics to clear up the body cavity from the bacteria, and peritonitis can be extremely painful.  

I'm not trying to scare you.  Hopefully the pain for your daughter was caused by gas in the tethered area and nothing more. Is she still gluten free?  

Follow your mommy instincts.  

Hugs. :heart:

Kimberly


----------



## Niks

I guess one good thing is she doesn't have her appendix anymore, so one less thing to worry about.

Yes she's gluten free. Any food seems to cause pain. I'm thinking maybe dropping food Nd drinking just fortisip compact. Definitely something to talk to doctor about x


----------



## Kimberly27

Good news about the appendix.  Whew!

Kimberly


----------



## poppets mum

We almost had the same appendix issue with my other daughter who has a chronic pain condition. Had a bit of a tummy ache that lasted four days. Her doctor didn't think it was much but advised me to take her to ER just to check it out, and I very nearly didn't bother. Afterwards the surgeon told me it was a nasty looking thing that was close to rupturing. The scarey thing is these kids do get so used to dealing with pain that their tolerance is so much higher, making it difficult to sort out what is serious and what isn't. Also you get so fed up of going to ER, A&E it becomes harder and harder to go. My Doctor always says she would far rather send someone for tests and have them go to Hospital and it be nothing, than that one time they didn't and it be serious. I know your daughter is not a kid any more but is there some bribe or treat that can be offered to tempt her in some way? Really hoping you both get some relief soon.


----------



## kimmidwife

Niks,
Sending hugs. I hope you guys get some answers finally. Keep us posted!


----------



## Niks

She has promised me she will ring the hospital tomorrow.  I really think she needs to go without solid food, it is causing sooooo much pain.  Although the pain she had early this morning wasn't after eating, it woke her up.

Maybe if the hospital thinks she needs to go in she may listen, but she may play it down!!  Have written her a list of things to tell them and some questions too.


----------



## vtfamily

Niks said:


> Thanks for all your input!
> 
> Vtfamily, thanks you for sharing some of your son's experiences.  I too am sceptical with tests done.
> 
> Her MRE apparently showed nothing serious, we are waiting for her clinic appointment on 2nd April.
> 
> She said last night that she didn't know what was worse, persistant vomiting or severe pain.  Before her last hospital stay her pain was there, but nothing like she is getting now, but now her vomiting is much much less!!
> 
> She thought this morning that her bowel had 'exploded'.   Her breathing was extremely fast, she was clammy and pale.  She explained it like the pain was unbearable, bubbly, throbbing and squeazing, this is new.  I wonder if bowel has gone into spasm?  I calmed her and breathing down, she had oramorph and buscopan and it has settled a little, but still there.  She tried an enema, thinking maybe something was stuck, but nothing at all came out (third day).
> 
> AAARRRGGHHH, when is this poor girl going to get a break


Glad the "doctor mom" thing helps, but with those symptoms...if she has a fever, take her to the ER.  At minimum, if it were me, I'd send a message to her primary care doctor and her specialists.

If she is willing...one thing that worked for my son's constipation (his record was 13 days with a bm) is a flavored mineral oil called Kondramel (not sure of spelling) Oil.  It tastes like marshmallows.  It lubes the entire tract and, eventually, everything s-l-i-d-e-s on out.  It worked much better than Miralax did for us.

Maybe you two can relax with a cozy blanket and a favorite girl movie!!!!

One more thought...take a video of one (or more) of her pain episodes.  That will get their attention.  I've been telling Gus' GI doc about his extreme pain off and on for a long time.  Once he SAW Gus curled-up in a ball, rocking himself...THEN he "got it."  The GI said I should video it and send it to him when it is that bad.  Hey, whatever it takes!


----------



## CarolinAlaska

Niks, I'm concerned that she ruptured at her blockage site.  Is she having any fevers?


----------



## Niks

CarolinAlaska said:


> Niks, I'm concerned that she ruptured at her blockage site.  Is she having any fevers?


Carol, her temperature is normal!! 37.5 but when in hospital it was always low! 35 - 36.5. So that's a little odd. 

This morning she has pain but nothing like yesterday morning! She's going to call hospital but will have to wait for a call back, will see what they think!! Xx


----------



## Niks

vtfamily - some great ideas - have pics of stool, vomit with blood etc but not videos!  Seems mean but if it works!!

We have watched a lot of films!!!  :yfaint:


----------



## Sascot

Hope the hospital has something useful advice.  Not too long till the appointment on the 2nd, but every hour seems long when you're watching your kid in pain.
It is definitely worth asking about exclusive EN.  When we were told about it, our GI said you had to have a minimum of 6 weeks exclusive for it to make a difference - they went for 8 weeks just to be sure!


----------



## kimmidwife

Niks,
I was thinking along what Carolin said about the possibility of a rupture. With a rupture the pain will actually get better after that really bad pain. Please have her get checked out!


----------



## Niks

kimmidwife said:


> Niks,
> I was thinking along what Carolin said about the possibility of a rupture. With a rupture the pain will actually get better after that really bad pain. Please have her get checked out!


She seems to be managing on the pain relief she has at home, she is just very tearful and unhappy .  Think it is all getting a little too much for her. She didn't get a call back from hospital either, so she just doesn't know what to do.. 

Just wish I could swap places!


----------



## Kimberly27

:ghug::ghug::ghug:

Hugs.

Kimberly


----------



## Niks

Jaime got a call back from one of the Registrars today after literally sobbing down the phone to the answer machine!  He has given her his bleep number so that she can contact him and he will get her a bed at anytime if she needs to go in for pain relief.

He wanted her to get checked out by GP to check she hasn't perforated her bowel, and has doubled oramorph and put her on amitroptyline.  GP thinks she is 'backed up'!!!  How can this even be possible with all the enemas!!!???  Crazy.  She also says that if she starts vomiting or gets a temperature to go straight to the hospital, the trouble with that is she is so used to vomiting she won't see it as a new symptom!

She really wants to hold out until appointment next week, I can't see it somehow!  She has been in a right state.


----------



## Kimberly27

Niks,

It's hard when they are older because we know how much better the compliance is with "buy in".  But remember, pain can influence decision making and she may not be in the right mind to decide what is best for her.

Hugs.  I still like the idea of going to the hospital, and not the local A&E.  I would go back to Oxford, because if something is wrong, you don't want her stuck at your local hospital.

Kimberly


----------



## Clash

I'm so sorry that she is in such a state. I know the possibility of going to the hospital before the appt is draining for her but I do hope she comes around to it if this continues since there is no way for her to know the level of seriousness of what she is experiencing.

I'm sending prayers and hugs your way. I hope that they soon find the source of her issues and get her to feeling so much better!


----------



## Niks

Kimberly - We would NEVER go back to our local hospital!  She has the bleep number (for Oxford), so if she calls them they will have a bed ready for her, is a bit like a security blanket, but agree it is difficult.  She does seem more comfortable but, she is zoned out on morphine!

Clash - I have had to come into work, but when I get home can assess what she actually looks and feels like.  Hopefully she is a little better like she says!  This morning she was in agony!  I don't really know what to think about her GP thinking she is backed up although her enemas haven't worked since Friday.


----------



## Kimberly27

Tough times.  Hang in there.

Kimberly


----------



## Sascot

Thinking of you.  That is good they have given her a pager number - at least it's an option so she knows they will help if needed!


----------



## vtfamily

Niks,

I know this is a totally dumb question, but... did the GP actually do an x-ray or is he just guessing???

Your post took me back to the early days with Gus.  His GP and first GI doc almost always attributed gut pain to constipation.  It took a long time, but we finally have reached a "level" of understanding where everyone agrees that the constipation is a symptom of the cause of the pain, not the pain itself.  Hope you can achieve that understanding as well.

I can never think of these things when I'm at the appointment, but maybe you could call back and ask for an expanded explanation.  Something like "since she has had ____ enemas per day/week since ____ and they have been effective in flushing the colon, then what else could explain the pain?"

I really hope Jamie is set on a path toward relief soon.  So happy to hear she has the bleep number.

Take Care.
Cheryl


----------



## CarolinAlaska

Niks said:


> She seems to be managing on the pain relief she has at home, she is just very tearful and unhappy .  Think it is all getting a little too much for her. She didn't get a call back from hospital either, so she just doesn't know what to do..
> 
> Just wish I could swap places!


How frustrating!  Poor Jaime!  I hope she can find healing and remission very soon!  I hope it isn't anything bad.  I think if it were a rupture, she'd get very sick.


----------



## CarolinAlaska

Niks said:


> Kimberly - We would NEVER go back to our local hospital!  She has the bleep number (for Oxford), so if she calls them they will have a bed ready for her, is a bit like a security blanket, but agree it is difficult.  She does seem more comfortable but, she is zoned out on morphine!
> 
> Clash - I have had to come into work, but when I get home can assess what she actually looks and feels like.  Hopefully she is a little better like she says!  This morning she was in agony!  I don't really know what to think about her GP thinking she is backed up although her enemas haven't worked since Friday.


Zoned out on morphine and in agony...this does not make a good combination for decision making.  This is not constipation.  Your girl is very sick again.  I hate to say this, but she needs a better doctor checking her out!  Get her back to Oxford!


----------



## Niks

Cheryl - no she didn't do an x-ray, but did speak to the Registrar at Oxford.  She could feel backed faeces in her left lower abdomen!  

She has slept all night!  This is really good for her.  

I hate it but have to go back to work again today!  We have a back up plan with her Dad and brother if she needs it, but I am ever hopeful that what ever was causing this bad pain is easing off.

I have made her put the pager number in her phone and she has given it to her Dad too!  

Just hoping for a peaceful few days for her until appointment next week.  Thank you for all your thoughts, wishes and support xxx


----------



## Clash

So glad to hear she was able to sleep through the night without having her sleep disturbed by pain. I hope she continues to improve and it is smooth sailing to the appointment!!!


----------



## DustyKat

:well: How are things going Niks?

Dusty. xxx


----------



## Niks

Hi Dusty, thanks for thinking of us!!

She's coping better with higher doses of pain relief and is only eating soft food and drinking her supplement drinks. 

Last night she even went out for a couple of hours with some girl friends!! .  It is months since she's done that!! 

Hanging on for Tuesday appointment!!! Will go armed with list of questions!! 

xx


----------



## DustyKat

Wow!  

I hope all stays settled until Tuesday and you finally start getting some solid answers! Good luck! 

Dusty. xxx


----------



## Sascot

That was nice to hear.  Glad she managed to get out and have fun!


----------



## Devynnsmom

Thats GREAT news! I'm glad she's feeling a bit better. I hope Tuesdays appointment leaves you with some answers.


----------



## Kimberly27

Yeah!  Seeing friends is a great type of medicine.

Kimberly


----------



## Niks

My turn tonight!!  :devil:  Looking forward to a few beers with some lovely friends!!  

:cheerss: :cheerss: :cheerss:


----------



## my little penguin

WOOHOO enjoy some ME time


----------



## izzi'smom

Enjoy your time...thinking of you guys!!


----------



## upsetmom

Enjoy....:beerchug:....you deserve it.


----------



## Devynnsmom

Have fun!


----------



## Jmrogers4

Have fun, glad Jamie was able to get out for a little while.  Hope Tuesdays appt. goes exceedingly well


----------



## QueenGothel

Drinking a beer with you my friend.  Summer Shandy yum


----------



## DustyKat

I hope you had a fab time with your mates Niks! 

Dusty.


----------



## Niks

Had a great evening !!  Was good to destress :ylol:

Just a quick question!  Just looking through Jaime's discharge letter again and one of her bloods IGA was 0.74g/L  It has an * by it and the numbers to the side are 0.8-3.0, so I am guessing her level is on the low side.  Does anyone know what IGA  is?

Just trying to work out questions for Tuesday!

:confused2:


----------



## my little penguin

> Selective IgA Deficiency Overview
> Selective IgA Deficiency is the most common primary immunodeficiency disease (PIDD). People with this disorder have absent levels of a blood protein called immunoglobulin A (IgA). IgA protects against infections of the mucous membranes lining the mouth, airways and digestive tract.
> Although individuals with Selective IgA Deficiency do not produce IgA, they do produce all the other kinds of immunoglobulin. This is why many people with IgA deficiency appear healthy or only have mild reoccurring illness such as gastrointestinal infections.
> A common problem in IgA deficiency is susceptibility to infections. A second major problem in IgA deficiency is increased occurrence of autoimmune diseases. Also, many people with Selective IgA Deficiency also have allergies or asthma.


from:
http://www.aaaai.org/conditions-and...iciency-disease/selective-iga-deficiency.aspx


----------



## my little penguin

> Selective IgA Deficiency Symptoms & Diagnosis
> The most common symptom of Selective IgA Deficiency is susceptibility to infections including:
> • Pneumonia
> • Sinusitis
> • Ear infections
> • Chronic diarrhea caused by gastrointestinal infections
> IgA deficiency may also cause autoimmune disease, in which the immune system attacks itself. Common examples of these diseases are rheumatoid arthritis and lupus.
> Diagnosis requires blood screening to show an IgA deficiency but normal levels of other immunoglobulins.


from:
http://www.aaaai.org/conditions-and...iciency-disease/selective-iga-deficiency.aspx


----------



## my little penguin

> IgA deficiency is usually inherited, which means it is passed down through families. However, cases of drug-induced IgA deficiency have been reported.
> 
> It may be inherited as an autosomal dominant or autosomal recessive trait. It is found in approximately 1 in 700 individuals of European origin. It is less common in people of other ethnicities.
> 
> See also: Celiac disease - sprue


from:
http://www.nlm.nih.gov/medlineplus/ency/article/001476.htm


----------



## Niks

Thanks MLP!

Her Potassuim when admitted was 5.8  which is high and two days later was 2.3!  Low!  How can that even happen!  She ended up having to have IV Potassium was 3.9 on discharge.

Her Chloride when admitted was 108 which is high, but guessing that was down to dehydration.  Wasn't retested.


----------



## Kimberly27

FTI- When I was tested for celiac ten years ago, the IgA blood test was one of levels my doctor was interested in.

I've been gluten free for a decade and feel great.

Kimberly


----------



## Niks

Jaime has been completely gluten free since December and it hasn't made a bit of difference!  Will be interested to see if her latest biopsies show improvement with coeliac tendencies x


----------



## Kimberly27

I know it's a lot of work at first, and to see no difference must be frustrating.

What is her IgA December number?

Kimberly


----------



## xmdmom

Potassium can be elevated for a number of reasons.  It is common for samples to be artifactually  elevated if the blood sample is hemolyzed (which some times happens due to a tight tourniquet when drawing blood.)  Acidosis, (acidic blood)  can also cause serum potassium to rise.  Refeeding after malnutrition can cause potassium to fall , as can treatment of acidosis.  (Acidosis is shown by a low blood ph or low serum bicarbonate.)


----------



## CarolinAlaska

Couldn't crohn's be an autoimmune disease caused by IGA deficiency as well?


----------



## Niks

xmdmom said:


> Potassium can be elevated for a number of reasons.  It is common for samples to be artifactually  elevated if the blood sample is hemolyzed (which some times happens due to a tight tourniquet when drawing blood.)  Acidosis, (acidic blood)  can also cause serum potassium to rise.  Refeeding after malnutrition can cause potassium to fall , as can treatment of acidosis.  (Acidosis is shown by a low blood ph or low serum bicarbonate.)


This makes sense with Potassium! They were struggling to get blood because she was so dehydrated. She gad been unable to eat before being admitted!

Kim - we didn't get any results un Swindon, so don't know whatit was or if it was even tested!!


----------



## Dexky

CarolinAlaska said:


> Couldn't crohn's be an autoimmune disease caused by IGA deficiency as well?


I wondered the same when I read that.  It doesn't mention crohns but mimics some of its symptoms.  It does say common examples of…so I assume the list wasn't meant to be complete.


----------



## xmdmom

The IgA of .74 g/L  is only slightly low and wouldn't be IgA deficiency based on this article. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821513/

"Immunoglobulin (Ig) A deficiency (OMIM 137100) is defined as decreased or absent level of serum IgA in the presence of normal serum levels of IgG and IgM in a patient older than 4 years of age, in whom other causes of hypogammaglobulinemia have been excluded [1, 2]. *In general, serum IgA level of less than 7 mg/dL (0.07 g/L) is considered as selective IgA deficiency *since this concentration is the lowest detectable limit established by most of the laboratories."

The article goes on to say:
When serum IgA level is higher than 7 mg/dL but two standard deviations below normal for age, the condition may be referred to as partial IgA deficiency, which is quite common.


----------



## Niks

Okay thanks guys! So that's not too bad then!  Sure she will get her bloods done again this week, so if anything off should show.


----------



## fosterschick

Gud luck for tomorrow xx


----------



## vtfamily

Thinking of you.  Hope all goes well at the appointment!
Cheryl


----------



## Lewiss mum

hey niks just catching up not been on for w while . hope all hoes well today hun and u get some positive answes.xx


----------



## Catherine

Hoping the appointment go well today.  Still in WA, will check in more when we are back.


----------



## upsetmom

Good luck with the appointment.


----------



## Bubbly

Wishing you both well today and fingers crossed you get some answers x


----------



## Sascot

Good luck with the appointment!!


----------



## Devynnsmom

Good luck!!


----------



## Clash

Good luck with the appointment!


----------



## Kimberly27

Good luck!

Kimberly


----------



## Niks

UUURRRRGGGHH!!  Just home!  Waited just over an hour for appointment and then was in there for about an hour and 10 mins!

NOTHING conclusive!  MRE all good, showed nothing!  At least four tests that have been done in passed in Swindon have shown inflamation/ulceration!  (I didn't know this!!)  But nothing seen in Oxford.  Could be due to being on Pred for so long.

Jaime had red itchy eyes today, he asked her about this, and looked.  He asked her about mouth ulcers, she showed him some whoppers, and he asked her about bruising (some shiners on her legs), Jaime never used to bruise!!

He is uncertain what is causing her pain.  Maybe constipation, maybe tethering, although this didn't look so bad on MRE, compared to CT scan.  

Suggested to up laxatives, upping lactulose and adding sodium docusate and upping amitriptyline to 50mg for pain!

Making a follow up appointment for 6 weeks, but can call at any time with any concerns.

One very fed up Jaime.   She just  wants them to 'cut out' the bit that hurts so bad!!


----------



## Mylittlesunshine

So sorry to hear this niks
Big hugs to you both x x


----------



## Devynnsmom

I'm sorry  I can't imagine how incredibly frustrated you both must be.


----------



## Niks

Oh!  They found NO evidence of Coeliacs Disease!  They are pretty sure that she does not have this,  but have advised to stay gluten free for the time being.


----------



## 723crossroads

sorry you are under so much frustration and I hope they figure it all out soon hun! Blessings!:ghug:


----------



## Clash

I just can't imagine the frustration Jaime must feel combined with the pain, my heart just aches for her and you. I hope the new med work to relieve the pain and my thoughts and prayers are with you both!!


----------



## Kimberly27

I'm stunned.  Poor Jamie.  Poor you.  

Hugs.

Kimberly


----------



## Catherine

So sorry Niks, there were no answers.


----------



## my little penguin

Hugs Niks
I wish there was an easy answer
Hope something points them in the right direction soon.
I do know for some it takes a little longer than they would like
At least this Gi seems to be looking still


----------



## my little penguin

Remind me was a pill can still on the table ??


----------



## vtfamily

WOW!  I'm sure those results were a huge let down.  There is nothing worse than feeling "stalled" in the process.

So, it sounds like they still think she is constipated?!?  That just seems crazy to me.  Can you send a message and ask if that is the case, and upon what they are basing that decision?  It's the only explanation for the prescription they gave her.  Given what she has been doing...it just doesn't make sense and some of that stuff is pretty toxic if taken in too great a quantity.

I'm going to suggest the Kondremul Oil again.  It is a marshmallow flavored mineral oil.  It will coat and lube everything.  Once she is passing salad dressing into the toilet...I DARE them to say she is still constipated.  Grrrrr.  I'm frustrated for you!

Here's a link to some information: http://www.drugs.com/cdi/kondremul-emulsion.html    (Note: Gus took it orally, not as an enema.)

Hugs to you!  Hugs to Jamie too!


----------



## Niks

my little penguin said:


> Remind me was a pill can still on the table ??


no MLP they think the MRE was enough! I don't quite know what they want to do next!! I think she's stumped them!  He DID say there was evidence of inflammation /ulceration previously . But not now!!! Still could be slow motility, but would that cause this horrendous pain ?

Cheryl - Thank you about Kondremul oil!!! Will be ordering some today!!!  We are going to see how she goes , but if no improvement or any worse we will be using that pager!!


----------



## fosterschick

U must be so frustrated , will they be re scanning when she is totally off steriods , she seams typically ibd to me all t physical signs in t bowel , ulcers , inflam , narrowing , its flipping england I swear theyt have a new rule not to diagnose ibd they musty b short on funding in this area !! Grrr xx big hugs to u and ur jaime xx


----------



## izzi'smom

I'm sorry it didn't go better today...


----------



## Niks

fosterschick said:


> U must be so frustrated , will they be re scanning when she is totally off steriods , she seams typically ibd to me all t physical signs in t bowel , ulcers , inflam , narrowing , its flipping england I swear theyt have a new rule not to diagnose ibd they musty b short on funding in this area !! Grrr xx big hugs to u and ur jaime xx


I don't think they have any plans!!  :ybatty:  It is so frustrating.  This amount of pain is not normal!   She didn't have it anywhere near this bad when she was really backed up, but was vomiting continuously.


----------



## upsetmom

How is J ?


----------



## Niks

She was in agony this morning but took more oramorph.  She shouldn't have to suffer this much pain!  GRRRRR.  Since doing enema and taking oramorph it has settled.  

She was so fed up yesterday, because she just wants to know what is wrong with her and just sort out the vomiting and pain!!


----------



## upsetmom

:ghug:..Poor girl she has gone through so much.


----------



## dannysmom

How very frustrating! How long will they think oramorph and enemas are a solution, I wonder? 6 weeks seems so long for next appt with this level of pain. I hope Jaime starts to feel better.


----------



## Niks

Does anyone know where or if you can get Kondremul Oil in the UK!?  Can't find anywhere that will ship over :ack:


----------



## Maree.

Do an advanced search and restrict the region to United Kingdom so you don't have to wade through all the American sites. There seem to be a few UK based online shopping sites that list.


----------



## vtfamily

Niks said:


> Does anyone know where or if you can get Kondremul Oil in the UK!?  Can't find anywhere that will ship over :ack:


If you want to private message me your address...I'll go pick some up at our pharmacy and ship it to you!

Cheryl


----------



## Mylittlesunshine

Niks just had a look amazon uk sell it


----------



## kimmidwife

Hi Niks,
I have been off the computer for a week on a mini vacation so I am just catching up. I am so sorry to hear no answers. I am not surprised that her insides looked good on MRE with her having been on steroids so long. Is she still on them (I dont remember)? IS there any plans to rescope?


----------



## Catherine

Hi Niks,

Sarah's MRI after her first course pred also showed a completely clear large bowel.  Her small bowel was also didn't have much inflammation.

So yes pred could be the reason nothing show up.


----------



## Niks

Kim - she tapered off and finished beginning of last week. I really don't know what plans are, I just don't know how she can carry on in this amount of pain! She was almost better off completely blocked up and vomiting!!! 

Cheryl - thank you so much. Have ordered some, if I have problems will take you up on that! 

Catherine - was this before or after diagnosis?  It is all so frustrating!!! I don't know what to think anymore :ybatty:


----------



## Kimberly27

Niks,

Keep video taping the pain, and keep peppering them with phone calls.  Maybe this is a "squeaky wheel gets the grease" type of thing.  If you think the pain is getting worse, then follow your instincts.

Brainstorm:  Have they checked her ovaries and/or any other gynecological issues?  I'm sure it has nothing to do with anything, but maybe something is pushing against her other organs?  Endometriosis?  Just a brainstorm.

Hugs.  You're doing a great job.

Kimberly


----------



## Niks

Kimberley, her initial investigation back when she was 15 went down the gynae route, nothing showed, appendix removed (healthy)!  Things seemed to settle.  Then a year later the same sort of flare, checked by laparoscopy for endometreosis, nothing seen with ovaries, but she did have an inflamed bowel.  Again things settled, so nothing further investigated!  

Here we are again.  This is the longest time she has been sick for, doesn't seem to be letting up this time x


----------



## Kimberly27

Niks,

Well, it's good they ruled things out.  Now...for an answer!

Kimberly


----------



## Catherine

Niks

It was after dx, but have two MRI to compare.   One before any treatment which showed lots inflammation in the large bowel and second one after the use of pred and aza which showed no inflammation in the large bowel or valve.


----------



## Catherine

Niks said:


> Kimberley, her initial investigation back when she was 15 went down the gynae route, nothing showed, appendix removed (healthy)!  Things seemed to settle.  Then a year later the same sort of flare, checked by laparoscopy for endometreosis, nothing seen with ovaries, but she did have an inflamed bowel.  Again things settled, so nothing further investigated!
> 
> Here we are again.  This is the longest time she has been sick for, doesn't seem to be letting up this time x



The inflamed bowel they saw.  It would have been the outside of bowel?


----------



## 723crossroads

Niks said:


> Kimberley, her initial investigation back when she was 15 went down the gynae route, nothing showed, appendix removed (healthy)!  Things seemed to settle.  Then a year later the same sort of flare, checked by laparoscopy for endometreosis, nothing seen with ovaries, but she did have an inflamed bowel.  Again things settled, so nothing further investigated!
> 
> Here we are again.  This is the longest time she has been sick for, doesn't seem to be letting up this time x


How about vitamins Nik? Does she take D3 and fishoil? Probiotics ever? Magnesium citrate as David suggests too? Since I upped my Vit D3 and got Mag. citrate, wow what a diff. in my pain level and flares! Hope she is trying this too.


----------



## Niks

Catherine said:


> The inflamed bowel they saw.  It would have been the outside of bowel?


Yes it must have been!  

CT scan and barium (although got stuck and didn't move for over an hour and then she vomited) also showed inflammation.  MRE recently showed none of this..  As has already been said may be because of Prednisolone since October.

She thinks the enemas are causing bloating and gas, which will be painful, but if she doesn't have Seems like a vicious circle!

Teresa - her B12 came back really low in October and she has had loading dose of shots, but no nothing else, her magnesium levels were pretty high though..


----------



## Dexky

I can't imagine living like she's had to these last few months and I especially can't imagine watching my kid have to live that way!  I guess you have no choice but to muddle through and keep pushing for answers.  God bless you Niks!  Praying for some relief soon for Jamie!


----------



## Catherine

Is she still taking lactulose?  See side effects

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682338.html


----------



## Niks

Catherine said:


> Is she still taking lactulose?  See side effects
> 
> http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682338.html


Yes and I have raised this several times!!  They do not think her symptoms are because of the lactulose, but would definitely be worth missing it and seeing what happens!  x


----------



## Bubbly

Just wanted to send a hug your way, and really hope you can get some answers soon.

I really feel for you both xx


----------



## Niks

Ohhhhhhhh!  Jaime vomited badly at work today and then collapsed, out cold.  :eek2:

They called an ambulance and the paramedic wanted to take her to A&E in Swindon, she persuaded him to call Oxford and they told him they would have a bed waiting for her.

So in a nutshell, been in Oxford all day, just got home at 1.15am!  They wanted to keep her but she insisted that she wanted to come home.  Have attached her x-ray.  She is even more backed up than she was before, WITH all the laxatives and enemas!  How can this be possible GRRRRR.

They have sent her home with the same stuff that you have for a colonoscopy prep.  She wants to wait until tomorrow to do it, rather than be up all night.  It is looking much more like motility, causing constipation don't you think??  

Have been told to ring at any time day or night if there is any change or she gets worse!


----------



## Niks

Oh there was nothing at all in her lower colon, which is what has happened before.  She seems to be backing up where she has the really bad pain.  Now is that causing her to back up or is the backing up causing the pain?  Seems to be  a chicken and egg situation x


----------



## Dexky

I hope the scope prep gets her moving Niks.  It's bound to help alleviate the pain if she can clear all that out!  Good luck!


----------



## my little penguin

Hugs can you push for a pill cam to see what in her small intestine might be causing the backing up


----------



## Kimberly27

Is there a clear distinct "line" where the back-up begins?  Maybe they can compare it with the x-ray from last time and look for clues?

Hugs.  

She must really be on their radar now!  That's a good thing.

Kimberly


----------



## Niks

Kimberly27 said:


> Is there a clear distinct "line" where the back-up begins?  Maybe they can compare it with the x-ray from last time and look for clues?
> 
> Hugs.
> 
> She must really be on their radar now!  That's a good thing.
> 
> Kimberly


Her lower colon is always clear.  It seems to be backing up where she gets the severe pain!  On xray there is a  big mass on left lower abdo, but even without the xray being explained we could see it all the way through her bowels and really clearly top left!  This photo isn't as clear as the actual x-ray but gives a bit of an idea!  Poor girl.
We both slept in this morning.  She has just taken the Citrameg, with 50mg lactulose and 4 senna as directed!  Surprised she wasn't sick!  But fingers crossed this gets her moving.

Surely she can't keep doing this?  Had next clinic appointment through for 21 May!  We'll see if she can really hold on this long.

MLP - When I have asked about this they seem to think that there is no point as her MRE was clear!  When I said yesterday that she's been on Pred for so long is this why her MRE was clear, they said NO!  He said that she would still show signs if she did have an IBD.  So maybe it is just motility?  If it is this seems hard to sort out though.


----------



## Devynnsmom

OMG poor Jaime  and poor you  I hope you get some answers soon. I would be pushing for them to get you in soon!


----------



## kimmidwife

Sending hugs! I am hoping you guys get some answers soon. Can you ask them to push up her appt?


----------



## CarolinAlaska

Niks, I don't get how they can possibly think it could be anything other than IBD...

Regarding the constipation, it is a well-known side effect of opioids and oramorph is a huge opioid.  You've got to wean her off of that stuff.  If she is constipated and it is causing so much pain, you can't give her something that will continue to exacerbate the problem (or perhaps in her case continue to make everything seem be to from the constipation, but really is it from the opioids?).  I totally feel for you and your dear daughter.  I will pray that the sources of her symptoms will be eliminated so the real cause of her problem and pain will be made clear.  <<<Hugs!>>>>

PS.  Chronic opioid use also leads to more pain and anhedonia (a general feeling of being unwell that makes the person crave more opioids to help them feel normal).


----------



## Maree.

I hate saying this because I really hope you find a quick answer that gets her feeling well again soon.

Niks if the pain/pain killer use has been going on for more than 3 months.  I'd consider asking for a referral to a pain clinic.  Carolin is right the pain killers could be contributing to the issues as long term pain killer use has lots of side effects.

That definitely doesn't mean I'm saying stop hunting really hard for answers that are going to make her better, but in the meantime a pain center might be able to help her to cope better with the pain levels without needing the current level of pain medications.

If you get a referral to a pain center and the problem gets resolved in the meantime, you can always just cancel the appointment.

On the NHS site they say 
http://www.nhs.uk/Livewell/Pain/Pages/Longtermpain.aspx
- Chronic, or long-term pain, is pain that has lasted for three months or more.
- If you have long-term pain it might be as a result of a diagnosed medical condition, a painful condition that is not yet fully understood 

So having an understanding of what is wrong does not seem to be a prerequisite.


----------



## DustyKat

Oh my Niks, your poor girl and poor you having to watch her suffer so. :ghug: 

Sending loads and loads of love and luck and you soon have answers!!!

Dusty. :heart: 

PS. I don't agree that Prednisone would have had no effect on the MRE results.


----------



## vtfamily

Niks,

I felt the same as you regarding constipation causing pain or constipation a symptom of the real issue.

For us, constipation is a "side effect" of the other issues.  Gus has serious strictures in the intestine (top and bottom), but not in the colon (yet).

You have more advice than you can use, but here's one more for the record...
Have them keep her in the hospital and "unconstipate" her.  They should keep her there until the x-ray shows she is totally clear.  Then re-do the MRE.  Who knows what they couldn't see though the constipation?!

I hope the docs figure this out for you very soon!

Hugs.  Cheryl


----------



## CarolinAlaska

Hopefully she'll be unconstipated soon with the clean out.


----------



## Niks

Wow, so many replies since yesterday!  Thank you everyone.

I absolutely agree about the Oramorph AND Tramadol.  It is a vicious circle!!  She does know that these can make things worse and is desperately trying to wean them down.  It is such a fine line though, because if she lets it get too bad then it is so much harder to get back under control.

I like the idea of a pain clinic though and that is definitely worth getting her referred to if we can.  

Although probably not helping matters, I am convinced that her pain meds is not the main cause of her problems as this has been going on so long and way before she was having Oramorph at all, and only very occasionally Tramadol.

Yesterday the Citramag and senna took 5 hours to produce anything, but then the floodgates opened!!  

Has had the same pain today, but as not working has managed on only one lot of Oramorph, and the rest paracetamol and buscapan, and lots of hot baths!!


----------



## kimmidwife

Niks,
I am glad to hear the "floodgates opened" but not glad to hear she is still having pain. I hope you can call tomorrow and get them to move up her appt. Waiting until May in this amount of pain is just unacceptable!


----------



## Mylittlesunshine

Hi niks 
So sorry to hear about Jamie and her pain
I hope they manage to bring her appointment 
Forward to try to get to the bottom 
Of her problems. 
Hugs Hun to the both of u x x


----------



## vtfamily

Niks,

I know what you mean.  Gus is only 12 and about 65 pounds, but when we do bowel prep with Miralax, things barely get moving after two jumbo sized BOTTLES!  Keep in mind, you are only supposed to have to give one or two capsful.  I think it is another indication of the "problem" we are dealing with.  Perhaps, one day, the doctors will finally understand.  That's why I suggested they do her clean-out in the hospital.  Then they can see for themselves that this is no ordinary situation.

Happy weekend to you!


----------



## Niks

Do any of you have really annoying family?

Questions like - 'Well what IS wrong with her?'  'Why don't THEY do something?'  'Why does she need enemas?' 'What is her diagnosis'?  'Why don't they know?'  'Surely they must know now?'  'Why is it taking so long!?' 'Oh well, Doctors know best!!!!'   GRRRRRRRR    I literally could SCREAM!!!   :voodoo:  :yrolleyes:


----------



## Devynnsmom

Yes Niks, I do! Family, friends, co-workers. I also have people who tell me to make Devynn eat healthy and that would "cure" her. She eats VERY healthy AND she usually has a huge appetite. Although, that is almost gone lately.


----------



## poppets mum

I can soo feel your frustration. Amy has been dealing with constipation issues for almost a year. Her xray showed she was fos and we ended up needing colonoscopy prep too. Also tried to do enemas until she screamed in agony when liquid went in. Also in pain whenever she eats and tests come back frustratingly normal. The prep did work though but she still has to take lax a day every day or else she bleeds and can not go. She has been going through a tough time last few weeks pain wise and we are fed up waiting for it to end. Pain clinics are very good at giving suggestions of coping with chronic pain and I can highly recommend them. I would try to get her in if you can.


----------



## CarolinAlaska

Glad to hear that she started moving that stuff out.  Even if she doesn't find complete resolution, something has to feel better to get that stuff out that has been stuck so long.  I can only imaginine the odor!  Poor dear!


----------



## vtfamily

Yes.  It is difficult for extended family (and even friends) to really understand that there is no "fix" and even harder for them to understand how difficult it is for the doctors to pinpoint the issues.  I agree, GRRRRRRRRR.


----------



## dannysmom

I understand too Niks. Many people just cannot imagine that sometimes doctors do not agree, or cannot determine a diagnosis or treatment plan. I really hope the Oxford team can finally figure things out for Jaime.


----------



## Mylittlesunshine

Niks, how's Jamie doing? X


----------



## Niks

Hi MLS

Since the Colonoscopy Prep on Saturday she has not had a BM!  This is not good.  Although, so far she has not had vomiting!

We have asked for her appointment to be brought forward, they are sending us a new appointment.  

Her pain is still there and now spreading to her back, which is what happened at the end of last week.

So all in all not great, but at least so far no vomiting!


----------



## Kimberly27

I asked at our UCSF apt. about motility in the bowels.  She said that sometimes certain parts of the bowels can become temporarily paralyzed, and that it can take up to sixth months for them to get working properly again.  I forgot the name of the condition.

Is this what they are suggesting?  It sure seems like an IBD and plumbing issue to me.

Kimberly


----------



## Niks

Kimberly27 said:


> I asked at our UCSF apt. about motility in the bowels.  She said that sometimes certain parts of the bowels can become temporarily paralyzed, and that it can take up to sixth months for them to get working properly again.  I forgot the name of the condition.
> 
> Is this what they are suggesting?  It sure seems like an IBD and plumbing issue to me.
> 
> Kimberly


Kimberly, I just researched this, was it Paralytic Ileus?  It certainly sounds like this is what is developing!  When her symptoms started her motility wasn't a problem!  

This evening she feels really poorly , she feels exhausted, aches everywhere, her abdo pain is there, but not severe, but the back pain is much worse.  She says she feels like she has the flu, has vomited (me and my big mouth) and still no BM..

:confused2:


----------



## kimmidwife

Niks,
Back pain is a symptom of IBD. I wish you guys would get some answers already. I really feel for you guys. I hope you get that moved up appt fast. You guys our in my thoughts sending hugs your way!!!


----------



## Kimberly27

Niks-

Yes, that was it!  Good research.

Kimberly


----------



## xmdmom

Paralytic ileus: Obstruction of the intestine due to paralysis of the intestinal muscles. The paralysis does not need to be complete to cause ileus, but the intestinal muscles must be so inactive that it prevents the passage of food and leads to a functional blockage of the intestine. *Ileus commonly follows some types of surgery, especially abdominal surgery. It also can result from certain drugs, spinal injuries, inflammation anywhere within the abdomen that touches the intestines, and diseases of the intestinal muscles themselves.* Irrespective of the cause, ileus causes constipation, abdominal distention, and nausea and vomiting. On listening to the abdomen with a stethoscope, few or no bowel sounds are heard (because the bowel is inactive). Also called paralytic ileus. Also simply called ileus.

As you can see, an ileus has many causes.


----------



## fosterschick

Jusr sending hugs wish I cud send a cure ! Xx


----------



## Farmwife

How's thing today?


----------



## kimmidwife

Thinking  of you guys!


----------



## 723crossroads

Hoping for great news Niks!!!:ghug:


----------



## Mylittlesunshine

Hi niks , thinking of you and Jamie
How's things x


----------



## Niks

Aw thanks everyone. She's managed the whole week at work!! Only taking oramorph maximum of twice a day, which is at least half. Enemas not working that great though.  She said she felt like she was in labour yesterday!! 

she agrees she needs to come off morphine but pain is still bad and now also in her lower back.  

Oh - her legs are covered in small bruises!! She never used to bruise!! She was a gymnast and could pretty much somersault and crash of the beam without so much as a mark!! She doesn't remember bashing herself at all..  Her eyes still itchy and red and has a couple of mouth ulcers that come back a day or two after they've cleared up!


----------



## my little penguin

Has anyone ever looked at bechets disease for her?
It tends to be mysterious .
Something to ask the docs about .


----------



## Niks

Thanks MLP, will check that out and ask xx


----------



## 723crossroads

Niks, Going off any type of opiate is VERY difficult! Everything hurts for a really long time. Both my kids were addicted for yrs and yrs under diff. circumstances totally. But my son still can't sleep without ativan because of it and he has been off them for a yr and 4 months now. Opiates take away all the pain and then your body can't seem to cope with any pain when you try to come off them. Keep this in mind. She may have to substitute one drug for another for awhile.Hope this sheds some light for you what you are dealing with. it takes patience and alot of support.:ghug:


----------



## CarolinAlaska

Sending my love and concern, Niks.


----------



## 723crossroads

Niks said:


> Aw thanks everyone. She's managed the whole week at work!! Only taking oramorph maximum of twice a day, which is at least half. Enemas not working that great though.  She said she felt like she was in labour yesterday!!
> 
> she agrees she needs to come off morphine but pain is still bad and now also in her lower back.
> 
> Oh - her legs are covered in small bruises!! She never used to bruise!! She was a gymnast and could pretty much somersault and crash of the beam without so much as a mark!! She doesn't remember bashing herself at all..  Her eyes still itchy and red and has a couple of mouth ulcers that come back a day or two after they've cleared up!


Lack of magnesium causes bruises easily....


----------



## Kimberly27

Niks,

I don't know much about it, but what about acupuncture to help reduce Jaime's pain while she weans off the drugs?  

I'm not sure how your country's health care system works, but if the doctor thinks the drugs could be exacerbating her condition, then it seems like something with very few side effects is worth trying. 

Kimberly


----------



## Niks

Kimberly, thank you! I have thought about this, I used it when I had a really bad back it was amazing!  It is a really good suggestion, I need to ask about it.

She seems to be coping better now that she's taking a higher dose of Amitriptyline..  She has only just increased to 50mg, so hopefully that will help her reduce morphine.  She says she is still having bad pain, but she does seem much more comfortable and she definitely hasn't been curled up and rolling round like previously!

Fingers crossed!!


----------



## DanceMom

Could the bruises be Erythema Nodosum?  Do they start out as red painful lumps?


----------



## Niks

DanceMom said:


> Could the bruises be Erythema Nodosum?  Do they start out as red painful lumps?


Have just looked at this because never heard of it!!  No, I don't think so, she doesn't know where they've come from and I'm sure she would remember if she had lumps x


----------



## DanceMom

A's lumps aren't huge (though we're still waiting on the biopsy results to be sure she actually has EN).  But the "bruises" start out red, then develop a lump (sometimes you can feel it better than you can see it), then the lumps go down and the red bruises turn a darker color like a regular bruise.  A gets these mostly around her knees, ankles, and on her shins.


----------



## Niks

Guess what!  Just told J about Erythema Nodosum, hers DO start as lumps!  I just felt some, you could be right!  Will definitely be mentioning this to GI, although is it even associated with Gastro problems?


----------



## CarolinAlaska

Niks said:


> Guess what!  Just told J about Erythema Nodosum, hers DO start as lumps!  I just felt some, you could be right!  Will definitely be mentioning this to GI, although is it even associated with Gastro problems?


It is associated with IBD.


----------



## 723crossroads

I have that too. I have them on my legs and feet and they just keep coming!


----------



## Niks

URRRGGHHH.. J was literally vomiting for 20 mins solid, some blood in vomit. Even by her standards that's a lot of vomiting!!She phoned on call GI. Told her to take colonoscopy clearout again.  If anymore vomiting or blood to call back immediately. Hope prep works quickly!! 

Also advised to stay on soups and juices!


----------



## Devynnsmom

Oh no!  Hope the prep works fast!


----------



## 723crossroads

saying a prayer niks!!!:ghug:


----------



## Kimberly27

Hugs.

Crossing my fingers for quick prep relief!

Kimberly


----------



## CarolinAlaska

How awful.  Send her my concern, and let her know we're thinking of her.  I hope it works, I'm sorry she has to do it again.


----------



## Dexky

I don't see how this poor girl can function.  I've only been following her story since Dec. and I don't think she's had a day w/o pain or vomiting or both.  How does she ever eat anything?  They are missing something!!!  I hope they find it soon or there's gonna be nothing left of her!


----------



## Niks

Dexky said:


> I don't see how this poor girl can function.  I've only been following her story since Dec. and I don't think she's had a day w/o pain or vomiting or both.  How does she ever eat anything?  They are missing something!!!  I hope they find it soon or there's gonna be nothing left of her!


You know, it sort of becomes normal. You are right.  She has come to accept it, but it's not right!! She did manage to gain a few pounds when she wasn't vomiting, but goodness knows how long that will stay on now!! :eek2:

Still waiting for GI appointment x


----------



## Niks

Grrrr, need to vent!

J vomiting blood again today!  The colonoscopy prep really didn't do much this time round, her vomiting has got much worse again.

She called GI on call.   He spoke to consultant and they are pretty sure that she has probably torn her stomach a little, causing the bleeding.  He was uncertain whether to get her in again or see if we can manage at home, he advised her to see GP and for the GP to call him if he was at all concerned.

I was at work so couldn't go with her, but GP not our normal one and was absolutely useless!  Didn't call GI, took BP 89/50, but pretty much that was it!!  Gave her new anti sickness (Prochlorperazine) and sent her packing saying the oramorph was probably making her sick! He didn't even listen to her bowel sounds or take her temperature!! Considering she does not take this hardly at all and her previous history I am pretty horrified!

Pretty fuming right now.  She has taken new anti-sickness, but the first sign of nausea or vomiting I shall be calling the GI myself!


----------



## Ands

Niks we have given up on our GP practice unless we see a partner and even then very often they have so little to add.  It is so frustrating. 

I really feel for you all, it really can't be easy and I know hospital is the last place your daughter wants to go back to but it might be for the best.

Hugs from 'down the road'. Xx


----------



## vtfamily

Niks,

If I could, I would fly over and help you camp out in front of the GI's office until they decide to keep Jamie and get to the bottom of this stuff.  Shame on the GP for not immediately recognizing that vomiting blood requires intervention.

GRRRRR on your behalf!!!

Cheryl


----------



## Mylittlesunshine

Aw Hun 
I'm so sorry Jamie is not feel good again . 
She needs a break and so do you. 
Keep at the GI untill they get sick of you
Hope things approve x x


----------



## Kimberly27

I don't understand why nobody is seeing the whole picture!  I just don't get it...

Ugh!

Kimberly


----------



## DanceMom

I'm really upset with the care Jamie has received and it makes me terrified that A will get the same kind of care as an adult.  No one deserves to be so blatantly ignored in that way.  Hope she gets some answers and some relief soon!


----------



## Niks

I guess her bloods generally come back okay and her MRE was clear!  Therefore nothing to go on...

Very frustrating and horrible to see her so poorly, the most annoying thing is that there has been inflammation, there has been previous bleeding and initially Pred worked..  Barium got stuck and didn't move anywhere, until vomited, surely this should all flash up warning signs, along with weight loss, vomiting and now very few BM's even with laxatives and enemas :ybatty:

Have just e-mailed through to secretary to push forward clinic appointment, if we make it that long!


----------



## 723crossroads

Utterly ridiculous!!! I am so sorry Niks! Plz keep us posted. GRRRRR!!!!!:ymad:


----------



## Devynnsmom

Niks, I too am disgusted at the way Jaime has been and is being treated by health care professionals. Your poor girl must feel completely helpless  I wish we could all come camp out on the GI's lawn! ((((hugs))))
Devynn's blood work etc always comes back normal too. It's so frustrating when you KNOW there is something going on, and they read the numbers and look at you like.. oh well. We were in yesterday and they said her blood all came back looking great, and because her MRE from DECEMBER.. and upper and lower scope from JAN 2012!! looked good, they will just see how things go (no changes) until July. THEN they want to take her off all meds and see what happens. I just don't get it. I have emailed her NP and asked for copies of all the blood work they did last week, and then the results of the blood work from yesterday. So frustrating!

(((((hugs))))) for you and Jaime. You HAVE to get answers soon!


----------



## Niks

Samantha - that's pretty shocking too!! Really hope you get it sorted. 

Have just spoken to one of the registrars in Oxford. He's finding her a bed and we're going up tonight..


----------



## 723crossroads

That's wonderful news. Try to get them to do a pillcam. Beg, borrow or steal to get it, whatever it takes. Something is wrong in there!


----------



## Farmwife

GOOD!

Hugs and prayers coming your way!


----------



## 723crossroads

Yes!!!! Lots!:ghug:


----------



## Mylittlesunshine

So glad there admitting her
Tell them your not leaving till 
They find out what is wrong x 
Hope Jamie gets some relief and 
Answers soon x 
Please let us know how it goes 
Hugs x x


----------



## Devynnsmom

I'm very happy to read this!! Keep us posted!


----------



## Kimberly27

Finally they are listening to you!

Kimberly


----------



## my little penguin

woohoo for getting a bed---


----------



## Niks

Only just back.  Jaime really not happy about  being in again!

She has not really had a proper BM since the very first colonoscopy prep 2 weeks ago!  Not good.  She saw one of the GI's who was looking after her last time she was in.  He is convinced she has a 'global gut dysmotility disorder'.  It sounds pretty much like gastroparesis.

He also said that it is really hard to treat this condition!  He took her bloods, but is sure they will come back normal (me too, they always do!).

It sort of makes sense, but frustrating that there isn't very much they can do to help her!  Anyway for now they are going to keep her in and get her cleared out, they are working out tomorrow the best way to do this!  

The nurse took initially 4 attempts to fit a cannula, and failed. She then tried twice to get bloods with a butterfly needle, still nothing!

The Doctor finally did it on his second attempt.  Lucky she has got over her needle phobia!


----------



## 723crossroads

My friend has that from diabeties. She is never hungry she says. But, I don't recall he throwing up. But she may just not of told me.Hoping they can find something to help your poor daughter. Maybe still do a pillcam? Just to be safe?


----------



## my little penguin

http://gi.org/guideline/management-of-gastroparesis/


----------



## my little penguin

> Identifying the Cause of Gastroparesis
> 
> Recommendations
> 
> 
> Patients with gastroparesis should be screened for the presence of diabetes mellitus, thyroid dysfunction, neurological disease, prior gastric or bariatric surgery, and autoimmune disorders. Patients should undergo biochemical screen for diabetes and hypothyroidism; other tests are as indicated clinically. (Strong recommendation, high level of evidence)
> A prodrome suggesting a viral illness may lead to gastroparesis (postviral gastroparesis). This condition may improve over time in some patients. Clinicians should inquire about the presence of a prior acute illness suggestive of a viral infection. (Conditional recommendation, low level of evidence)
> Markedly uncontrolled ( > 200 mg/dl) glucose levels may aggravate symptoms of gastroparesis and delay gastric emptying. (Strong recommendation, high level of evidence.) Optimization of glycemic control should be a target for therapy; this may improve symptoms and the delayed gastric emptying. (Moderate recommendation, moderate level of evidence)
> Medication-induced delay in gastric emptying, particularly from narcotic and anticholinergic agents and glucagon like peptide-1 (GLP-1) and amylin analogs among diabetics, should be considered in patients before assigning an etiological diagnosis. Narcotics and other medications that can delay gastric emptying should be stopped to establish the diagnosis with a gastric emptying test. (Strong recommendation, high level of evidence)
> Gastroparesis can be associated with and may aggravate gastroesophageal reflux disease (GERD). Evaluation for the presence of gastroparesis should be considered in patients with GERD that is refractory to acid-suppressive treatment. (Conditional recommendation, moderate level of evidence)


from:
http://gi.org/guideline/management-of-gastroparesis/


----------



## my little penguin

> Diagnosis of Gastroparesis
> 
> Recommendations
> 
> 
> Documented delay in gastric emptying is required for the diagnosis of gastroparesis. Scintigraphic gastric emptying of solids is the standard for the evaluation of gastric emptying and the diagnosis of gastroparesis. The most reliable method and parameter for diagnosis of gastroparesis is gastric retention of solids at 4 h measured by scintigraphy. Studies of shorter duration or based on a liquid challenge result in decreased sensitivity in the diagnosis of gastroparesis. (Strong recommendation, high level of evidence)
> Alternative approaches for assessment of gastric emptying include wireless capsule motility testing and 13 C breath testing using octanoate or spirulina incorporated into a solid meal; they require further validation before they can be considered as alternates to scintigraphy for the diagnosis of gastroparesis. (Conditional recommendation, moderate level of evidence)
> Medications that affect gastric emptying should be stopped at least 48 h before diagnostic testing; depending on the pharmacokinetics of the medication, the drug may need to be stopped > 48 h before testing. (Strong recommendation, high level of evidence)
> Patients with diabetes should have blood glucose measured before starting the gastric emptying test, and hyperglycemia treated with test started after blood glucose is < 275 mg/dl. (Strong recommendation, moderate-high level of evidence)





> Exclusion Criteria and Differential Diagnosis
> 
> Recommendations
> 
> 
> The presence of rumination syndrome and/or eating disorders (including anorexia nervosa and bulimia) should be considered when evaluating a patient for gastroparesis. These disorders may be associated with delayed gastric emptying, and identification of these disorders may alter management. (Strong recommendation, moderate-high level of evidence)
> Cyclic vomiting syndrome (CVS) defined as recurrent episodic episodes of nausea and vomiting, should also be considered during the patient history. These patients may require alternative
> therapy. (Conditional recommendation, moderate level of evidence)
> Chronic usage of cannabinoid agents may cause a syndrome similar to CVS. Patients presenting with symptoms of gastroparesis should be advised to stop using these agents. (Conditional recommendation, low level of evidence)





> Management of Gastroparesis
> 
> Recommendations
> 
> 
> The first line of management for gastroparesis patients should include restoration of fluids and electrolytes, nutritional support and in diabetics, optimization of glycemic control. (Strong recommendation, moderate level of evidence.)
> Oral intake is preferable for nutrition and hydration. Patients should receive counseling from a dietician regarding consumption of frequent small volume nutrient meals that are low in fat and soluble fiber. If unable to tolerate solid food, then use of homogenized or liquid nutrient meals is recommended. (Conditional recommendation, low level of evidence)
> Oral intake is the preferable route for nutrition and hydration. If oral intake is insufficient, then enteral alimentation by jejunostomy tube feeding should be pursued (after a trial of nasoenteric tube feeding). Indications for enteral nutrition include unintentional loss of 10% or more of the usual body weight during a period of 3–6 months, and/or repeated hospitalizations for refractory symptoms. (Strong recommendation, moderate level of evidence)
> For enteral alimentation, postpyloric feeding is preferable to gastric feeding because gastric delivery can be associated with erratic nutritional support. (Conditional recommendation, low level of evidence)
> Enteral feeding is preferable to parenteral nutrition. (Conditional recommendation, low level of evidence)


from
http://gi.org/guideline/management-of-gastroparesis/


----------



## my little penguin

Niks-
There is a lot more there in the link-
hope it helps-
I know a few children (young) with it- they have tubes and get botox among other things.

Good luck and hugs


----------



## Dexky

Good luck Niks and Jaime!  There has to be something that'll work for her!


----------



## vtfamily

Mylittlesunshine said:


> So glad there admitting her
> Tell them your not leaving till
> They find out what is wrong x
> Hope Jamie gets some relief and
> Answers soon x
> Please let us know how it goes
> Hugs x x


I agree.  It's time to stop being polite.  Since Jamie is an adult, the hard part is going to convince her that she needs to put her foot down and say she isn't leaving until they come-up with a better treatment plan and start asking different questions that will lead to new ideas!!!


----------



## 723crossroads

I so agree!:ghug:


----------



## vtfamily

Niks said:


> She has not really had a proper BM since the very first colonoscopy prep 2 weeks ago!  Not good.  She saw one of the GI's who was looking after her last time she was in.  He is convinced she has a 'global gut dysmotility disorder'.  It sounds pretty much like gastroparesis.
> 
> He also said that it is really hard to treat this condition!


There must be some kind of treatment.  No one can go on being constipated, vomiting, loosing blood and loosing weight.

Maybe a temporary colostomy bag?  Maybe total gut rest by putting her on TPN (IV nutrition) and nothing by mouth???  At least then she would be able to pass what needs passing and she would receive the full benefit of the nutrition.

I am lifting you both up in prayer!!!


----------



## 723crossroads

vtfamily said:


> There must be some kind of treatment.  No one can go on being constipated, vomiting, loosing blood and loosing weight.
> 
> Maybe a temporary colostomy bag?  Maybe total gut rest by putting her on TPN (IV nutrition) and nothing by mouth???  At least then she would be able to pass what needs passing and she would receive the full benefit of the nutrition.
> 
> I am lifting you both up in prayer!!!


Me too!:ghug:


----------



## Sascot

Sorry to hear Jaime is back in again.  I really wish they would manage to find something to help.  You would think they would be consulting other hospitals/specialists around the world trying to see what treatments there might be even if it is unusual.  I agree it would be worth asking about some sort of nutrition that cannot be vomitted up.  If they can at least try to get her body back some of it's weight/health!  Fingers crossed they come up with something new!


----------



## Niks

MLP, thank you for all the links!  I have read through a few, I found some last night, but think you've found more!!  Will read the rest tonight xx

Just heading back.   As she's not yet on the gastro ward hoping to catch the Doctor when he comes round!  J and I have discussed cutting out solid food.  I think she would do anything if it would help!  

For right now they need to work out how they are going to clear her out and then we need to then work out how to keep her going!!  

She does have a really good dietician, Jaime has her number so if she doesn't see her in hospital she can call her.  

She has been moved to a private room!  I guess there are no NHS beds available right now, so at least she has her own bathroom, which will be good, hopefully she will need to use it lots today!!!

Thank you for all your advice, support and good wishes xxx


----------



## Bubbly

So so sorry to hear all that is going on still, and agree with all the above, dreadful treatment she has received, and hopefully this time they can have some answers, if not stay in that bed, as much as she hates it, and say not good enough, you both need answers, she cant go on like this. 

Fingers crossed for a positive day today for you both, sending hugs and support from Cambridgeshire x


----------



## 723crossroads

Keep us posted Niks. We care!!!!:ghug:


----------



## Niks

We're both just back!

Massive melt down from Jaime, so they let her come home and do the prep, she really didn't want to stay in hospital!! 

He has given her 6 sachets of  Citramag.  She has been told to take 2 at a time with 5 senna.  If that doesn't get her moving then I really think there's no hope!  She has to repeat tomorrow night if she thinks she needs too!  Two more for back up.

Oxford are going to liaise with Swindon, (not her original Doctor, we made our feelings pretty clear about him!) and if she needs to be admitted again they will advise Swindon what needs to be done.  Her Clinic Appointments still in Oxford.

She has also been given Magnesium Hydroxide and has to add 45mls of this at night time.

The Doctor said they will probably add Prochlorperazine at her next appointment, but want to wait until she is more stable to do this.  (Need to research this, never heard of it!)

Surgery is an option, but it is the last line really, so they would rather not do it as it isn't that successful!

So, home, one very stressed daughter and I am in need of a very large glass of something!!  :ymad:


----------



## 723crossroads

Oh Niks, it seems so difficult I'm sure. Sorry you got no definitive help there. But lets just hope the prep works this time and doesn't make her sick. Sorry hun!!!:ghug:


----------



## Devynnsmom

(((hugs)))) and I hope this gets things moving!


----------



## vtfamily

Okay.  New plan.  Can you request to have a second opinion?  Out of country?  There are many, many choices, but I'm thinking the MAYO clinic could shed some light on the situation.  Also, in these situations, I am not opposed to using the media (news or reality tv) to point a gigantic glaring light on the problem.  That has a way of shaming people into stepping up and doing the right thing!!!

Just feeling so awful for both of you.
Cheryl


----------



## Kimberly27

Keeping you both in my thoughts.

Best of luck tonight.

Kimberly


----------



## my little penguin

I am confused - did the doc send her home or she insist on leaving??
She really needs to let them help her.
The best place for that is at the hospital.
Hugs
Hope the clean out works


----------



## Niks

MLP it ended up being a mutual decision.  She has never had a meltdown like that before and was upsetting to see.  The Doctor said to her that she could stay in to have the prep if she wanted to, but also could do it at home if she would feel better about it.

I think this is why they want to liaise with Swindon, so that we can get there quicker if we need to.

We saw two different Doctors when we were there and they both think that her condition is something that needs to be managed at home.  They were encouraged that her vomiting is much better (up until this week).  They both think that once she is cleared out properly, her bowels, with the right meds and laxatives, should start working, even if slowly.  WHAT ABOUT HER PAIN??   It should ease off when things settle down!?  Really?  How long is that going to take?  No one could say!  Tethered bowel looked much better on MRE so that is not causing problems (not convinced)

I said that I was concerned that her bowel may perforate and then we would have a serious situation, he assured me that this is very unlikely to happen.


----------



## DustyKat

Good grief Niks! You poor things. 

I hate that your lass is still having to deal with all this, you must be beside yourself hun. :ghug: 

I so hope the clean out works...and that if they are expecting you to deal with this at home that they have given you clear and explicit instructions of what to look out for and when to seek help. 

Good luck Niks! Fingers, toes and everything else crossed! 

Dusty. xxx

PS. If a pill cam is ever on the cards, in view of her constipation/obstructive type symptoms be sure they do a dummy run first.


----------



## Niks

They are still say pillcam is not necessary!  They are happy with this diagnosis.  J has been told first signs of vomiting to take the colonoscopy prep.  She doesn't have to take enemas daily though as they feel she is blocking further up, which is why they're no longer working! She can use them if she feels she needs to, but she is happier with that, as she was getting so sore, and all that was coming back out was the enema!

Just looking through her bloods from yesterday.  All pretty normal, but her alkaline phosphatase levels were 225 IU/L..  I don't know what this means, but from what I can see this is high for a female adult?  Female 42 - 98 IU/L 
 Male 53 - 128 IU/L


Anyone got any ideas on this?


----------



## DustyKat

A high ALP can be associated with a number of conditions but the main ones are bone or liver disorders. It may be glitch so if it is of concern then have LFT's redone. 

Where is Jamie at with puberty? Did she start late? 
...if it is an isolated raised liver result then you can't rule out that is related to Jamie's growth. ALP is frequently elevated during puberty and growth spurts. 

Dusty. xxx


----------



## Niks

Thanks for this. She's definitely stopped growing Dusty and wasn't late with puberty.  Hospital didn't say anything about this result so I guess they don't think it's a problem. Especially as everything else okay?? 

X


----------



## DustyKat

Okay, just looked at Jamie's med list and both narcotics (oromorph) and tricyclic antidepressants (amitryptyline) can raise the ALP in isolation. That may be why the hospital is unconcerned and they will be happy to just monitor it. 

Dusty. xxx


----------



## 723crossroads

Niks said:


> They are still say pillcam is not necessary!  They are happy with this diagnosis.  J has been told first signs of vomiting to take the colonoscopy prep.  She doesn't have to take enemas daily though as they feel she is blocking further up, which is why they're no longer working! She can use them if she feels she needs to, but she is happier with that, as she was getting so sore, and all that was coming back out was the enema!
> 
> Just looking through her bloods from yesterday.  All pretty normal, but her alkaline phosphatase levels were 225 IU/L..  I don't know what this means, but from what I can see this is high for a female adult?  Female 42 - 98 IU/L
> Male 53 - 128 IU/L
> 
> 
> Anyone got any ideas on this?


My friend had that and she got chelation done to her blood.
Another friend has ammonia way too high and it was her liver. 
I would do some research on that. There are things that will help balance it out.Her PH balance is off. Ask David, I know he would know.


----------



## 723crossroads

I went on bing2 and alot of good info came up on (how to balance your PH).


----------



## kimmidwife

Hi Niks,
 Sorry I have been out of the loop for the past week. I can't believe they still don't have a firm diagnosis for your girl. As someone else said is there anyway you can get an out of the country opinion? Also some specialists may be willing to look over her records and decide if she needs further testing etc. so you would not actually have to go there, unless they decide it is necessary.


----------



## Niks

This weekend she has drank two sachets of prep with 5 senna and after around 4 hours did an enema to start her off, which finally seemed to work.

The Doctors are convinced that she has a gut dysmotility disorder, (probable Small Bowel), I don't think this is the same as gastroparesis as that is more related to the stomach emptying!  Been on Computer a lot researching!

My concern is that her symptoms started the opposite with very loose stools with blood and mucus.  Now though she doesn't seem to be able to get her bowels moving at all on her own.  She hasn't had any bleeding since around February time.

The Doctors think that this is a reliable diagnosis, but it is hard to treat!  Jaime and I are on our own and financially struggling, I don't know how some of you guys cope without an NHS!!  If I could pay for a pillcam test I would do it in a heartbeat, just for peace of mind, but there is no way I can do this.  So going out of Country is probably not an option for us .


----------



## Maree.

So sorry to hear that things aren't getting any better.  Wish there was a quick fix.

The medical team your dealing with now  sound like they are on the ball.  I don't think you should feel bad that you can't afford to take her elsewhere, she is being treated by a team at a top hospital and my impression from what you've written is they are taking her symptoms seriously and working hard to find something that's going to help.


----------



## DustyKat

Thinking of you and your girl Niks...:ghug: 

Dusty. xxx


----------



## QueenGothel

Just wanted to touch base, sorry everything is still so unknown for you.  About gut mobility... They thought Rowan might have that as well.  When I spoke with her surgeon about it, and at the time she had the pamphlet for the hospital to go to for mobility issues.  Anyway... She told me that the only way to assure a mobility disorder of the small intestines was to do an ex-lap to check for obstructions and if non are found then to take muscle and tissue samples.  These muscle sample are what they need to determine if there in fact is a mobility issue. Then we did the ex-lap and they found the omentum was strangling her small intestines like a spider, this is when she had an omentumectomy.  I know that rowan's situation was very rare as she had no surgeries in the area that had been so strangled.  I would keep prodding the doctors though, they we talking about a GI pacemaker.  I know you said you cannot travel, but this website had some interesting information on it.

http://www.nationwidechildrens.org/motility-center


----------



## Niks

Hi Mary

This is really interesting!  She has not had anything really to confirm that this is the case.  They are going on the MRE.  I still think that there are problems where she has the pain and her appendix out!  Her next clinic appointment is on 21 May.  

They said last time that there is another test they can do, but I have heard nothing again about this.  

Thank you!  Will be asking for sure xx


----------



## QueenGothel

May 21st is my wedding anniversary.  9 years, makes me feel old.


----------



## Clash

I have been away, but just caught up on your thread. I so sad to hear that J is still having issues. I hope they are able to get to the source soon and get her to feeling better.

I know you and her both are probably emotionally spent and stressed. I feel for you so much and you are both in my thoughts and prayers!!


----------



## Niks

Oh my goodness!! Have a read of this!! Sounds so familiar!

http://www.dailymail.co.uk/health/a...covers-youngest-Briton-gastric-pacemaker.html

Can't link on my phone, but can copy and paste if I've typed it right!!


----------



## Dexky

What I took from that is there is a definitive test that Jaime could have to prove one way or the other!  I hope they don't choose to "open her up" first like they did that poor girl before running that test!!  Hey, it's something to consider Niks!  Fight like hell!


----------



## Maree.

It does sound like Jaime.  While looking up more details on gastric pacemakers I found the NHS Choices page on Gastroparesis, which does mention this as a treatment option and links to a document with more details.

http://www.nhs.uk/conditions/gastroparesis/Pages/Introduction.aspx

Also on the page is a list of the tests used to diagnose Gastroparesis, was curious as to which of these Jaime has had.


----------



## Sascot

Wow, that story really does sound familiar (as does the "doctors thought it could be all in her head" - drives me mad!).  Certainly something worth looking into and fighting for if necessary!


----------



## QueenGothel

I really hope they figure it out and soon.  It is tough seeing your kid deal with this.  I was a wreck when Rowan was going through that.  I totally feel your pain.:ghug:


----------



## xmdmom

Another rarer and more global gi motility disorder is pseudo obstruction - which is apparently a heterogeneous group of disorders of varying severity, course, cause and response to treatment. http://digestive.niddk.nih.gov/ddiseases/pubs/intestinalpo/  Not sure if J's doctors have considered this.

Here's the first page of a review article; one author is Nikhil Thapar, University College London, Institute of Child Health,Neurogastroenterology and Motility, London, UK
http://link.springer.com/static-con.../chp%3A10.1007%2F978-1-60761-709-9_22/000.png


----------



## Niks

Thank you!! Will look at that when home.  Xx


----------



## Niks

Maree. said:


> It does sound like Jaime.  While looking up more details on gastric pacemakers I found the NHS Choices page on Gastroparesis, which does mention this as a treatment option and links to a document with more details.
> 
> http://www.nhs.uk/conditions/gastroparesis/Pages/Introduction.aspx
> 
> Also on the page is a list of the tests used to diagnose Gastroparesis, was curious as to which of these Jaime has had.


Maree, just read this page.  I think Jaime has been diagnosed purely on the fact that her bowels just don't seem to be working and MRE is clear.  I am not convinced still that there is not some sort of obstruction where her pain is and where they saw the tethering of bowel on her CT scan!

I really want to push for pillcam.  Her pain is really bad at the moment, and without the colonoscopy prep she doesn't have bowel movements at all!  

My concern was perforation of bowel, but have been assured that this is very unlikely to happen..  Hmmmm, well it has happened to people, and if her bowels aren't moving surely this is possible?


----------



## 723crossroads

My brother's bowel burst open years ago and he was in so much pain, he couldn't even move. The bile had to be removed through a tube down his nose into his gut for 10 days. He easily could've died had he not gotten to the hosp on time. He had diverticulitis and thought it was stomach flu. That is until the pain got that bad. I really hope your daughter can get a pillcam just for peace of mind. I also hope they figure out why her bowel is not working at all. I never heard of that!:ghug:


----------



## Maree.

I agree you need to keep pushing for more tests.  If they are saying gastroparesis is a possibility they should at least do some of the tests that are appropriate for diagnosing that.


----------



## Niks

Hmm, her pain is bad, she can't walk..  Her legs don't feel like they work!  She wants to see if morphine will help before calling hospital.  Friday nights are not great are they with hospitals.

I am convinced there is something blocking in lower left abdo.

She doesn't ever feel the need to go for a BM, so says she doesn't FEEL constipated.  It isn't like she has the urge to go and is straining.  UURRRGGGHH  so frustrating.  She is now vomiting 6 + times a day.  Not as bad as at her worst but still concerning.  Will need to do another colonoscopy prep this weekend I guess


----------



## Maree.

Niks sounds like you need to go to hospital and some how manage to convince Jamie to stay.  Thinking and praying for you both.  God Bless.


----------



## 723crossroads

Niks said:


> Hmm, her pain is bad, she can't walk..  Her legs don't feel like they work!  She wants to see if morphine will help before calling hospital.  Friday nights are not great are they with hospitals.
> 
> I am convinced there is something blocking in lower left abdo.
> 
> She doesn't ever feel the need to go for a BM, so says she doesn't FEEL constipated.  It isn't like she has the urge to go and is straining.  UURRRGGGHH  so frustrating.  She is now vomiting 6 + times a day.  Not as bad as at her worst but still concerning.  Will need to do another colonoscopy prep this weekend I guess


You know Niks, when I had diverticulitis ,my pain was in lower left bowel.
It was very painful and I could not move my bowels and didn't feel like I had to go. Just terrible pain. Went to ER and they did a catscan w/contrast and could barely see the pocket of intestine that was probably infected. They put me in hospital for five days and pumped me full of antibiotics and I wasn't allowed to eat any solids till my bowels moved normally again. Did they check her thoroughly for this too? You have me wondering if she has that!!!When you have diverticulitis nothing can pass through because the bowel swells shut. That would explain everything coming back up too. I would put her on all liquids for now. Jello, broth,water,popcycles, etc....Pudding.


----------



## poppets mum

I guess they are not too concerned with how many of these preps she is having to do but I would be a little concerned can they be harmful after a while? Having to take Morphine shows how severe her pain must be, the poor love.


----------



## kimmidwife

Niks,
I agree with the others. Sounds like it is time to take her back to the hospital and demand they do more tests before they release her again. It is ridiculous that they are giving her a diagnosis with out proper testing and evaluation.


----------



## kimmidwife

Ps, Niks 
I was worried about the safety of using a colonoscopy prep so often. I cannot find anything on the Internet about it. Please make sure she is hydrating well when she is doing these treatments.


----------



## Kimberly27

They need to do something!  

I'm sorry you are both going through this yet again.  

Hugs!

Kimberly


----------



## Niks

She is much more comfortable now!  

I agree, I am concerned about the colonoscopy prep too.  I guess they've used this before with other patients, but will discuss it properly when she has her appointment in May.

Have a whole load of things to ask, list is getting longer!!

:eek2:


----------



## DustyKat

Thinking of you and your girl Niks and hoping for solid answers and relief soon, bless you both...:ghug: 

Dusty. :heart:


----------



## Niks

Quick update;

Poor Jaime has been in agony with really bad back pain and pressure.   Her bowels not opening, even with the colon prep.  The hospital have spoken to GP and she's trying a different colon prep (picolax).  Her GP is not very impressed with this, as taking colonoscopy preps all the time can thin the bowel lining!  She can't keep backing up like this though.  

Weirdly she is only vomiting between 2 and 6 times a day, which is no where near as much as she has in the passed.

She's recently started getting really bad heartburn to add to everything else.  We are hanging in for her appointment on 21st, but am really worried that they won't have a plan for her :ymad:


----------



## Maree.

The 21st seems like an awfully long time away.  Is there any chance you can get her seen earlier if you let them know how bad things are?


----------



## Niks

Maree, they know!  Jaime has called and spoken to Oxford.  Last time she was admitted overnight, they basically said this is something that she needs to be able to manage at home, with the help of her GP (who luckily is really good).

I have researched so much over the last few months and although gastroparesis fits in some ways, it doesn't seem completely right.  It doesn't seem that it is her stomach that is the whole problem.  Oxford are saying bowel dysmotility disorder, but haven't officially given us an actual name.  One GI said gastroparesis, am thinking after a lot of searching.  Chronic Intestinal Pseudo-Obstruction, which has been mentioned before.


----------



## Niks

http://www.medicine.virginia.edu/cl...-team/nutrition-articles/LacyArticleAug09.pdf


----------



## Maree.

How does the GP feel about waiting to the 21st?  Is he comfortable with that timeframe?


----------



## Niks

He has told Jaime to call him or go and see him at any time.  He has contacted Swindon in case she need urgent attention.  Although she has told him she will not see her original GI... Ever!


----------



## QueenGothel

I know psedo-obstruction is possible because they told me Rowan had that a couple of times.  For me it is a diagnosis of we don't really know what is wrong.  It is like saying someone with IBD has IBS.  There has got to be a reason whether medication, mobility or obstruction.  Something?!  Sorry end rant.  I hope she and you find some answers soon.  I hate the undiagnosed situation, I know it isn't the doctor per se but it still is something I hate.  Again just something I think in my experience. :ymad:


----------



## 723crossroads

It's so nice he said she can go see him anytime though. How many Dr.s say that? He must be a good one to care!:ghug:


----------



## Kimberly27

Is the apt. on the 21st (seems too long to wait), a team of doctors sitting together, or just one doctor?

Kimberly


----------



## Niks

The last time she had an outpatients it was just one doctor!  I guess it will be the same


----------



## Kimberly27

Is there an option to request a team of doctors?  I know that's how they do the difficult cases at Stanford University.

Kimberly


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## Niks

It sounds like a fabulous idea, but I know that getting an appointment with one doctor is like gold dust!  I will ask though..


----------



## Dexky

Niks said:


> Maree, they know!  Jaime has called and spoken to Oxford.  Last time she was admitted overnight, they basically said this is something that she needs to be able to manage at home, with the help of her GP (who luckily is really good).



I'm sure that'd be fine by Jaime and you!!  But if those $&^(&)&%^ers can't tell her how to do that then what is she supposed to do.  I can't imagine vomiting 2-6 times a day and thinking….oh well, that's better than it was before so I'm okay!!  This is supposed to be the best time of her life!!!  She can't keep going like this!


----------



## vtfamily

Niks, 

Been thinking of you and Jamie.  Gus and I have been in the hospital for 14 days.  Looks like we will be here another week.  Hope to finally have a period of remission fter this.

Cheryl


----------



## Niks

vtfamily said:


> Niks,
> 
> Been thinking of you and Jamie.  Gus and I have been in the hospital for 14 days.  Looks like we will be here another week.  Hope to finally have a period of remission fter this.
> 
> Cheryl


poor Gus and poor you. Hope he is feeling better reaaly soon.  :ghug:


----------



## CarolinAlaska

Niks, I just can't imagine seeing your child so sick for so long and being put off like that.  Your daughter must be made of steel to be able to hold up to the neglect!  I'm so sorry she is still so sick!  I don't have much hope for the appt on the 21st.  If they know what to do with her they'd be having her do it now, wouldn't they?  Is all of the UK like that?  You can't see your established doctor for months between appts?  Even if recently discharged?  That is nuts!


----------



## Niks

Carol and Mark

It is really frustrating and I feel like I am bashing my head on a brick wall whenever we see the Doctors.   They are all really lovely any sympathetic but we do not have any answers!  

What is worrying me at the moment is that the colon preps are not working at all!  Nothing coming out.  Surely this cannot be good.  

It is Jaime's 19 year old friends funeral tomorrow, so she is more concerned about being well enough for this.  (so so sad)  She has to travel up there tonight and is staying until Saturday because it is a 4 hour drive.  

She has promised me that she will talk to her GP about the prep not working this morning, but I really don't think he will convince her to do anything but go with her friends to say goodbye to her very lovely friend.


----------



## Maree.

Niks, make sure she has the details of the nearest emergency room in case things go seriously wrong while she's away then let her go.  I think emotionally it's really important to get to funerals of people who've been important to you, to be able to share your grief with other people who loved them and get some sense of closure.

But when she gets back if things haven't improved perhaps you need to push her about another visit to emergency and staying in hospital as long as they are prepared to keep her.  Sounds like she gets more comprehensive & timely care when she's admitted than when she heads to an appointment and is reviewed by a single doctor.


----------



## Catherine

Is she travelling with a friend?  It may be a good idea for that friend to have instructions for if things go wrong.


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## Niks

Yes she's travelling and staying with some good friends. They have hospital details and emergency numbers in their I phones!!


----------



## dannysmom

Poor Jaime. I am sorry about her friend - so sad.

I feel for you (and your poor head banging against the wall). I have some questions (because I forget things) - 
- Jaime's ESR and CRP have always been normal?
- Oral steroids helps Jaime, right?
- If so - do the doctors explain why steroids would help a motility issue, if the motility was not due to an inflammatory condition?
- Has there been any talk of trying biologics like Humira? 

I am really glad the doctors now seem caring and supportive - I am sure they are doing their best.
Hugs!!!!


----------



## Niks

Hi Jeanne

The only levels that have ever come back low are IgA, potassium and B12. Everything else normal.

when first on pred she improved so much!! Everytime she tapered to 20mg she started getting symptoms back again. However the last time she was put on 30mg she didn't improve.  When she had her MRE she gad been on some dose (between 5-30mg for 6 months).  Her MRE was clear, although inflammation was seen on ct scan and colonoscopy and even during laparoscopy when looking for endometriosis at 17.

We have had no suggestion of anything like humira.  They are sure it's motility, but you're right. None of it makes any sense :ybatty:


----------



## kimmidwife

Hi Niks
just popping in to check on you guys. sorry to hear she still is nnot doing well. I am not surprised about the heart burn.with all the vomiting the stomach acid can cause ulcerations in the esophagus. she should be on a medicine such as Zantac or Prilosec . (unsure of UK equivalents) also immediately after vomiting she should suck on an antacid such as Tums to help protect the lining of the esophagus.


----------



## Niks

Thanks, didn't know about possible ulcerations! Sure I can buy her things over counter x


----------



## kimmidwife

Niks,
Sorry about my previous post. I didn't realize so many words were changed by my phone so I just edited it. Stinky phones!


----------



## CarolinAlaska

Hi Nik.  I hope all goes well for her going to her friend's funeral.  That is sad for her and her friends.


----------



## Niks

Thanks Carol.

Lol i didn't even notice Kim!! X


----------



## 723crossroads

Thinking of you guys today at such a sad time!


----------



## kimmidwife

Wanted to check in and see how you guys are doing?


----------



## Farmwife

So sorry to hear about her friend.
I was hoping she was better.
I know the a mobility issue was brought up for Grace. Her GI wanted testing BUT she went down hill in a different direction. She still needs help to poo every day. I guess I need to be wondering about that a bit more.


----------



## Kimberly27

Sorry about Jaime's dear friend.

Maybe Jaime should be rinsing with a fluoride wash after each vomiting episode in an effort to protect the enamel on her teeth.  Perhaps a quick call to your dentist is in order.

Kimberly


----------



## 723crossroads

Water works fine. Fluoride is actually rat poison and should be avoided by us all!


----------



## Niks

She coped well away, but was having to use lots of pain relief.  She is going to do colon prep tomorrow as small BM Wednesday after colon prep (hard!?) but nothing since,  over 3 weeks, she's looking really bloated.

I will get her to go to dentist, I don't know anything about fluoride, but she does need to see dentist with all this vomiting!

FW hope Grace is doing okay!  xx


----------



## kimmidwife

Thanks for the update Niks. I am glad she made it to the funeral and back ok. I know it must have been rough. I was wondering if the doctors have recommended anything that might keep her bowels looser and help with the constipation issue so she wouldn't have to resort to the prep so often? I was thinking like pysllium husks or prune juice? Something to help keep things moving and prevent the backup. It seems they are treating the result of the back up and not the cause of it.


----------



## 723crossroads

Do suppositories do anything?


----------



## CarolinAlaska

Niks, I was at a CCFA (Crohn's and Colitis Foundation of America) conference today on IBD.  I took one big thing home from it, and I thought of your daughter (and my nephew)...  One of the GI docs said that if there is any possibility of stricture in the bowels, it is malpractice for a doctor to prescribe pain meds as they will make the problem worse, increase the nause, slow the transit, and ultimately could lead to bowel rupture!  Your daughter has got to talk to a doctor and get weaned off that stuff.  No one ever died of too much pain, but MANY young people die of opioid complications every year (even when given in right doses).  Opioid related deaths are now #1 cause of death in people between the ages of 18-40!  PLEASE talk to your doctor and your daughter about this.


----------



## Sascot

Hope the bowel prep works again.  Is she trying anything else along with it?  I don't mean over the counter meds, but some of the old fashioned things like prune juice (lovely) - I know prunes are not great, but if she is allowed custard - prunes and custard are nice together. I agree with Crossroads - is she trying suppositories as well - you can get glycerine suppositories over the counter and I don't think there is anything in them that would be harmful or interfere with what Jaime is already taking.


----------



## Niks

She has been told NOT to take prune juice as it is really high in fibre and she is supposed to be low fibre??  I absolutely agree with you, she has tried in the passed though and didn't made any difference.  She actually doesn't mind drinking it!!

Suppositories don't work,(although she hasn't tried them for a few months) as she doesn't seem to block up in the lower half of her bowels, which I think is why the enemas don't work now. Whenever she has been examined she is completely clear in lower half.  Surely this does suggest some sort of blockage??

Maybe we should ask her GP if she could try with suppositories again though.  

Carol - I agree about the opiods.  It is so hard though, because she is literally in a ball in agony :confused2:  They are the only thing that seems to help at all.  I really think she needs some proper pain management.  Need to go with her to GP and see if he can refer her to a pain management clinic urgently.


----------



## Niks

J says that when she has gone, just a tiny rabbit dropping it is white! She has had some odd colours but white!! 

Googled And suggests liver but all her bloods for liver have come back good. Weird? Probably digestive issues, anyone else had this??


----------



## dannysmom

Not sure what the white means .. but if it happens again, perhaps you can save it in the refridgerator so it can be tested?

Have you considered going to St. Marks Hospital for a 3rd opinion? I read they are UK's leading bowel disorder hospital.


----------



## Maree.

I don't know what it means either and did a web search too.  The mayoclinic had a Q&A page on white stool:  http://www.mayoclinic.com/health/white-stool/AN01724

Thought I'd point out the first line of what they had to say:
"White stool is not normal and should be evaluated promptly by a doctor."


----------



## 723crossroads

Niks said:


> She has been told NOT to take prune juice as it is really high in fibre and she is supposed to be low fibre??  I absolutely agree with you, she has tried in the passed though and didn't made any difference.  She actually doesn't mind drinking it!!
> 
> Suppositories don't work,(although she hasn't tried them for a few months) as she doesn't seem to block up in the lower half of her bowels, which I think is why the enemas don't work now. Whenever she has been examined she is completely clear in lower half.  Surely this does suggest some sort of blockage??
> 
> Maybe we should ask her GP if she could try with suppositories again though.
> 
> Carol - I agree about the opiods.  It is so hard though, because she is literally in a ball in agony :confused2:  They are the only thing that seems to help at all.  I really think she needs some proper pain management.  Need to go with her to GP and see if he can refer her to a pain management clinic urgently.


I still think she needs a pillcam soon!


----------



## Maree.

Don't want to sound like a pessimist here Niks, but will also add just because her liver tests we're normal in the past doesn't mean that they'd be normal if those tests we're done now, so if I was in your position I think I'd be wanting them re-run to reassure me that's nothings changed on that front.


----------



## Niks

Maree. said:


> I don't know what it means either and did a web search too.  The mayoclinic had a Q&A page on white stool:  http://www.mayoclinic.com/health/white-stool/AN01724
> 
> Thought I'd point out the first line of what they had to say:
> "White stool is not normal and should be evaluated promptly by a doctor."


I found that too Maree, but I am guessing as she has ongoing digestion and gastro problems that they will just put it down to this!  Her GP has asked her to go in this week, I told her she needs to mention it.

Jeanne, apparently it has been white for a while!  She said she told me, but I am pretty sure I would have remembered this!  I guess because I always ask her if she's managed to go at all that is what she thinks is most important.  I am off to work in a bit, will get a sample pot for her.  Hopefully she will go again in the next few days, only if it is only a tiny amount.

Teresa - I only wish they would agree to do this!  Although I doubt it would go through her at the minute, they need to do a proper clear out first!  xx


----------



## Niks

Maree. said:


> Don't want to sound like a pessimist here Niks, but will also add just because her liver tests we're normal in the past doesn't mean that they'd be normal if those tests we're done now, so if I was in your position I think I'd be wanting them re-run to reassure me that's nothings changed on that front.


Hopefully her GP will think they need re-doing too.  It's bank holiday here tomorrow, so she's going on Tuesday to see him.  Hopefully she can take sample with her and he can get bloods re-done.


----------



## fosterschick

Is she on any maintance laxitive ? Totally no where as bad as ur girl but wen I went in obstructed and they thought narrowings were t cause they gave me 8 to 10 movicols perday ( taken over the day ) for 1 mnth then down to 6 a day for further two months , now I just have them when my poop is thin and I feel like I need them , just an idea to throw in , senna and colon preps are agressive and movicol is more gentle by absorbing water from t body for sloppy poop !! So I'm told ?? Xx hugs and stuff x


----------



## Niks

She doesn't tolerate movicol or any thing similar. We have tried so many times. She instantly vomits! After several attempts and medical staff witnessing this they have put on her notes that she is allergic to it!


----------



## Kimberly27

Have you considered calling Oxford and update them about the color of Jaime's stool, just to make sure it's not a crisis situation?  I wonder if Jaime's "back up" it blocking the bile duct tube.  It may not be the liver functioning (normal tests), but rather a physical obstruction.

Hugs.  I know this is tough.

Kimberly


----------



## Niks

I will call Oxford, they must have someone on call tomorrow. They do seem to want to pass back to GP and Swindon, but you're right, as it's potentially liver related, they need to know!!


----------



## fosterschick

Godbless poor jaime and mums worry , never mind I just thought I would throw ideas into t pot , give her my thoughts xx


----------



## CarolinAlaska

Niks said:


> I will call Oxford, they must have someone on call tomorrow. They do seem to want to pass back to GP and Swindon, but you're right, as it's potentially liver related, they need to know!!


Grrr! :ymad: We thought we finally had you in good hands, now they want to punt back to Swindon? :eek2::ybatty: Go to St Mark's.  You need someone to start fresh with her and follow-through until this gets resolved!:confused2:


----------



## Kimberly27

Can you just show up at the Saint Mark's A and E (ER room) and get help that way?  If Jaime states her level of pain (imagining she's not on meds.) then don't they have to admit her?  

You're country's health care system is confusing to me.  But on the other hand, I spent $13,000 on medical last year WITH insurance!  So it's bad everywhere!

Don't you have legal rights to protect Jaime and get her care?

Kimberly


----------



## kimmidwife

Niks,
I have to agree with the others. She needs to be seen ASAP about this white stool. Like Kimberly27 said can't you just say you were passing through and St. Marks was the closest hospital to where you were? I know negotiating these health care systems is not fun but she needs to be seen by the best GI available at this point. She is not a normal case and needs to be seen by the top guy.


----------



## kimmidwife

Niks,
I tried to google top GI docs for GI motlility disorders in the UK and this is what I found:
This is the website:
http://www.cuh.org.uk/addenbrookes/services/clinical/gastroenterology/services/motility.html
This is about them:

Corporate informationAddenbrooke's HospitalResearch and DevelopmentThe Rosie Hospital
For patientsFinding usServicesInfection controlNewsFor health professionalsHave your sayContact usWorking for us
Gastroenterology
About us
Our services
Barrett's oesophagus and oesophago-gastric cancer
Coeliac disease
Dyspepsia and other upper gastrointestinal disorders
Endoscopy
General gastroenterology
Inflammatory bowel disease (IBD)
Intestinal transplantation
Iron deficiency anaemia
Irritable bowel syndrome (IBS)
Motility disorders
Nutrition and intestinal failure
Patient information
GP information
Meet the team
Research
Education
Useful links

For NHS staff on NHS computers

Gastroenterology and endoscopy information on Connect - the hospital intranet



> Website accessibility help
Motility disorders
Gastroenterology services

The gastrointestinal motility service undertakes studies to determine if the bowel movements are normal. We can determine if the swallowing mechanism of the oesophagus is normal, and if there is a problem with the valves (sphincters) which may allow acid reflux. With the help of our colleagues in nuclear medicine we can also measure the rate at which food travels through the entire gastrointestinal tract including the stomach. The non-invasive urea breath test allows diagnosis of helicobacter pylori infection of the stomach, this bacteria can cause ulcers. Sometimes too many bacteria grow in the small intestine and can interfere with digestion. We call this bacterial overgrowth. This can be diagnosed with another type of breath test, called a hydrogen breath test.

We also offer a service called biofeedback which is useful for severe constipation, evacuatory disorders and bowel incontinence. This is a rather new specialised service which is based on non-invasive methods to treat these conditions. We have recently added sacral nerve stimulation to our service which has been producing very good results for treating bowel incontinence. Many patients with the irritable bowel syndrome have associated motility disorders such as evacuatory disorders and gastro-oesophageal reflux. The Addenbrooke’s IBS service works closely with the motility department to provide comprehensive investigation and treatment.

The GI Motility Service at Addenbrooke’s Hospital was established in 2002. It is managed and run by Dr. Stephen J Middleton MA, MD, FRCP (Motility Unit Director, consultant gastroenterologist), Dr. Xiaomei Ouyang MB BS, PhD (clinical scientist and lead GI physiologist), Sister. Lynette Byatt (specialist nurse), Sister Catherine Price (specialist nurse), Ms. Dianne Cinque (assistant physician), Mrs. Bridget Chukualim (data manager) and Ms. Paula Block (clinical coordinator). The following services are provided by the GI Motility Unit:
Oesophageal motility testing 
(Dr. Xiaomei Ouyang, from Monday to Friday throughout the year)
Ambulatory pH studies 
(Dr. Xiaomei Ouyang, from Monday to Friday throughout the year)
Biofeedback/bowel retraining for fecal incontinence or constipation 
(Sister. Lynette Byatt, once a week throughout the year)
Hydrogen breath tests for small bowel bacterial overgrowth and carbohydrate malabsorption 
(Ms. Dianne Cinque, every Thursday throughout the year)
Breath tests for h. pylori infection 
(Sister. Catherine Price, first and third Thursday of the month) 
Patients with GI motility disorders may be seen initially in Clinic 12, Gastroenterology outpatient, or they may be referred directly to the GI Motility Unit if referring physicians anticipate that diagnostic motility testing or biofeedback training will be needed. Diagnostic motility tests may be requested directly by outside physicians, but a medical consultation with one of the clinicians affiliated with the GI Motility Service is recommended.





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----------



## Niks

Carol - I think they want her to be able to manage on the whole locally!  They want her to be able to go to Swindon, but under their guidance I think!

Kim and Kimberly, we did literally just turn up at Oxford A&E.  I am really still holding out for them as they have a really good gastro team.  We just seem to have hit a brick wall right now.  She really isn't a typical case!!  

Also Kim thank you so much for finding the hospital in Cambridge!  That is a fair distance for us, but not impossible.  I need to talk to Oxford and see what they are really thinking and then her GP.


----------



## Niks

Finally got hold of on call Gastro today.  Not concerned about white stool, as she is not yellow!  He told me that they have a new medication that they want to start Jaime on at her next clinic appointment but have to apply for a license to give her this??  This sounds very odd to me!  Surely things should already be licensed??  Very confused.  Was at work when I talked to him and he didn't personally know Jaime.  So he had to look up her notes.  

Hmmm, maybe will have to wait until 21st to understand!  xx


----------



## Kimberly27

What's the name of the medication?

Kimberly


----------



## Niks

Honestly I don't remember!!  It began with P, but was so surprised I really didn't take it in!!  :ybatty:

Why would they have to apply for a license to give it to her though??


----------



## Kimberly27

Call them back and get the details.  You will drive yourself crazy with worry over this.  Someone can give you the answers quickly.

Kimberly


----------



## 723crossroads

Niks said:


> Finally got hold of on call Gastro today.  Not concerned about white stool, as she is not yellow!  He told me that they have a new medication that they want to start Jaime on at her next clinic appointment but have to apply for a license to give her this??  This sounds very odd to me!  Surely things should already be licensed??  Very confused.  Was at work when I talked to him and he didn't personally know Jaime.  So he had to look up her notes.
> 
> Hmmm, maybe will have to wait until 21st to understand!  xx


It must be something powerful and that would be a cause for licensing??? Maybe?


----------



## my little penguin

> Phenothiazines are dopamine receptor antagonists that act at the level of the chemoreceptor trigger zone in the medulla oblongata and include prochlorperazine and promethazine. These agents may be administered in a variety of ways including tablet, liquid suspension, suppository, or injection. Unfortunately, side effects in this class are relatively common and include sedation and as well as extrapyramidal effects (3). Parenteral prochlorperazine has undergone increased scrutiny recently by the FDA, cautioning its use due to several reports of associated tissue necrosis.


From :
http://www.practicalgastro.com/pdf/June07/June07BoninoArticle.pdf

Hope that helps


----------



## Niks

MLP thank you!! Amazing! That is what he said! How did you guess!? X


----------



## CarolinAlaska

Doesn't sound too promising to me!  Eek!


----------



## Maree.

Interesting that this is a gastroparesis medication.  One question I'd ask the GI is whether success on this medication would result in a confirmed diagnosis?

I have neuropathic issues and in that space response to particular medications is one of the ways that Neurologist finalise diagnosis, because some of the drugs have very narrow set of things they are effectively treat.  

If it is the case that success or failure of this med would show whether or not this is gastroparesis that might be another reason to consider giving this a try, even if the side effect profile means it's not something your comfortable with as a long term solution.


----------



## Niks

Maree I think you're right. She can't continue like she is, it has got to be worth a go!! Trying to find out how long it should take to work! X


----------



## lsgs

Niks I've not posted in here because I've had little to offer but if it's helpful I've been on that medication since about the same age as your daughter and have had no side effects. When I saw the list of side effects it freaked me out too but I honestly have not had one. 

It's been quite helpful in controlling my nausea.


----------



## Niks

lsgs said:


> Niks I've not posted in here because I've had little to offer but if it's helpful I've been on that medication since about the same age as your daughter and have had no side effects. When I saw the list of side effects it freaked me out too but I honestly have not had one.
> 
> It's been quite helpful in controlling my nausea.


Thank you! That is really good to hear x


----------



## Dexky

Such a tough decision for you and Jaime but she's really between the stones.  Good luck Niks!!


----------



## CarolinAlaska

I hope Jamie is doing well today.


----------



## Niks

Thanks Carol, she's pretty much the same. No BM's and a fair amount of pain.  

She's going to work though!! I think she's better doing things than staying in.  She's falling asleep a lot when not working, but at least that means she's coping with the pain!!


----------



## Sascot

Glad to hear she is managing to go to work, even if it is a struggle.  Hope the new meds help - I agree, anything is worth a try after all this!


----------



## 723crossroads

Poor girl, I can't even imagine going to work like that! When will she start new meds?


----------



## Niks

It won't be until 21st at earliest!


----------



## Kimberly27

Niks,

That seems like an awfully long time to wait.  

Kimberly


----------



## Niks

Kimberly, that's her next appointment!!  Have tried to get it brought forward but they won't!

:ymad:


----------



## Niks

Have just read more about Faecal calprotectin..  Do you think I should push for Jaime to have this test?  She had a stool test once when her stool was bright green which came back normal.  (It didn't look normal!), but I don't think this is the same thing?  

Just worried about putting her on medication for bowel dysmotility if she really does have an obstruction and inflammation that hasn't been picked up :confused2:


----------



## my little penguin

Simple test can't believe that haven't done one


----------



## 723crossroads

sounds like a good idea Niks! I would, just to make sure!


----------



## Mehita

Sounds like a good idea to me, especially if you can't get in to see the GI sooner. At least you'll have something. I thought I read in a post recently that it can take up to 6 weeks to get a result in the UK?


----------



## Maree.

Lots of people seem to get elevated Fecal Calprotectin results who get normal results on other tests, so it is definitly an interesting one to pursue.

Has Jaime had any scans that look at her small bowel?  Has she had stomach emptying tests and if so did they give any indication as to where in the digestive system the transit times slow down?

Although Liam's case is much milder and we are looking at much simpler treatments at present I have a similar concern with him.  If stuff is getting stuck in the small bowel for way too long could this be due to  obstruction or inflammation in there?


----------



## Niks

MLP - I really didn't understand that this test showed inflammation!  I really wish I'd realised earlier and asked about it!

Mehita, I don't know how long it takes, for tests to come back!  6 weeks sounds like a long time!

Maree - she has had a CT scan but that is all.  They tried a barium meal once, but it didn't go passed her stomach and after a long time of it just sitting there, she vomited.  The rest solidified in her stomach.  No other stomach emptying tests done!  They really are diagnosing on her symptoms and MRE.

Okay so this sounds like a good way to go, can her GP order it? Or does it need to come from GI?


----------



## momoftwinboys

*UVA Digestive Health Center
UVA Nutrition Services
DIET INTERVENTION FOR GASTROPARESIS*

http://uvahealth.com/services/digestive-health/images-and-docs/gastroparesis-diet.pdf

I posted the liquid recipe section of this under the diet section for kids a while ago. Maybe it might be helpful??


----------



## Maree.

Thanks momoftwinboys, that sounds really interesting.  Liam's GI has said he will give us a diet for motility issues, he said timing of eating different foods, not just what you eat matters.  Will be interesting to compare what he recommends to this.


----------



## Niks

Will be worth a try!! Thank you  xx


----------



## Niks

URRRRRGGGGHHHH, J is convinced she's vomited faeces a couple of times today  this is NOT good.  Just wonder how long she has to go on like this before anyone really listens! :ymad:


----------



## xmdmom

Vomiting feces can be a sign of a large bowel obstruction (usually mechanical but sometimes "functional"/paralytic ileus) or fistula with the stomach.  Please call the doctor now.


----------



## my little penguin

Hugs
I second the calling the doc now.


----------



## Tink572

Oh, Niks, I'm with the others.  If you haven't already, please call her doctor.  Hugs to you both.


----------



## 723crossroads

Niks, 
 WHEN MY BROTHERS BOWEL BLEW OPEN HE HAD IT COMING UP TOO. THEY HAD A TUBE DOWN HIS THROAT INTO HIS STOMACH FOR 9 DAYS TILL IT ALL FINALLY CAME OUT. PLZ CALL A dR. AND GET HER TO ER!


----------



## Maree.

:ghug:
My thoughts and prayers are with you & Jaime.
Hoping that you've made it safely to hospital by now & that she's getting the help that she needs.


----------



## Niks

She didn't tell me yesterday until really late, as I was doing an 8 hour round trip to pick up my son from Uni for the Sumner. 

The same happened this morning, with blood!!! :frown:

Off to hospital now


----------



## CarolinAlaska

Oh Niks!  This is awful!  Thinking of you!  Are you at Oxford?


----------



## Niks

No Carol. Called Oxford, they told her to call out of hours in Swindon, because it's quicker to get there. We're just waiting! He said to get doctor at Swindon to call them.  Very nervous about this!!!


----------



## Sascot

So sorry to hear this!  Hope they manage to find out why it's happening.  Why is it these things always need us going to hospital at the weekend when half the staff aren't there!


----------



## Dexky

Any news Niks?


----------



## DustyKat

Good lord Niks! What a nightmare you and your girl living! :ghug: 

I hope Jaime is doing okay, bless her heart. 

In regard to her white stool, make sure they also bring her pancreas into the equation, not just the liver. 

Good luck! You are both in my thoughts. 

Dusty. xxx


----------



## Mylittlesunshine

Hi niks

Any news? How's Jamie? 
What did hospital say?
Thinking of you both x hugs


----------



## Niks

OMG I remember why the hell we didn't like going to Swindon!  We were at hospital by 8.00am.  She was referred pretty quickly to Surgeons.  We then waited a while.  A very lovely nurse after very patiently spending a good half an hour trying finally got bloods taken.  About an hour later was seen by surgeons who wanted to do x-ray (ordered straight away 10.00ish), and admit her.  'probably nothing much will happen over the weekend, but she needs to be nil by mouth and have IV fluids'

Jaime burst into tears (she hates staying in especially Swindon)  I asked them to call Oxford as Oxford had asked.  They didn't!

We waited until about 2pm.  No x-ray.  I chased up until about 2.45.  Still nothing.  Jaime went to the desk and said she wanted to discharge herself.  Suddenly a Senior Surgeon appeared, said he would chase x-ray.  Advised against leaving.  I asked what her bloods were and if I could have a copy.  After an awkward silence, THEY HAVE LOST THEM!!!  GRRRR..

Jaime, once again burst into tears and said she wanted to leave!  Signed a form and we are now at home, so have no idea what is going on.  She wants to take colon prep, and extra senna, hoping this will get things moving and go and see GP on Monday!!  She has only vomited 3 times so far today, but hasn't eaten since yesterday evening at 6pm.  I am completely at my wits end.  :ack:

I know you are all going to say, take her to Oxford, call them, but we called this morning and they wanted her to go to Swindon.  She refuses to go up there, so seems pointless calling them to update, when she wouldn't go even if they wanted her to..


----------



## Devynnsmom

Niks, I am SO Sorry. I can't believe the way they are treating Jaime! It's too bad you can't sue them. What would happen if you just went to OXford and told them about what happened at Swindon? Tell them you are NOT going back and maybe threaten to get the media involved if nothing is done? You must be so frustrated and poor Jaime must have lost all her faith in the doctors. ((((((hugs))))))


----------



## Ands

Niks, my thoughts are with you and Jamie.  This is truly the NHS at its worst; it just shouldn't be like this.  I can understand Jamie's wanting to come home and what a difficult position this puts you in.  As always you are there and supporting her and must be made of some pretty strong stuff yourself.  In your shoes I think I would just watch and monitor and if things get worse head straight to Oxford.

Look after yourself too, it must be draining on everyone.

Xxx


----------



## my little penguin

Just go to Oxford 
Drive and show up at the ER.
Simply she can't be at home


----------



## Niks

I agree MLP, but you don't know how stubborn my daughter is!  She has had enough of hospitals to last her a life time.

Devynnsmom and Ands thank you both, am going to leave it for now, but we will not be going to Swindon again.  I can't WAIT until her appointment on 21st and really explain what the hell has been going on.  Her GP very well might call Oxford for us on Monday.  He actually seems to be the only medical person who seems to care, or want to do anything right now!!!  

I think the problem is she doesn't 'feel' too bad!  She is so used to pain and vomiting I don't think she remembers what it feels like to feel well though :eek2:


----------



## Devynnsmom

Thats so sad  
 I remember being told when Devynn was first diagnosed, that these kids don't remember what its like to feel good sometimes. Devynn had MAJOR behaviour problems when she was younger and when she was diagnosed the dr told me we may see a major improvement once the meds for her tummy work. They did, in under a week she was a different child. She had no real memory of what it was like to feel well. Even now, she's been feeling so crappy (no pun intended) lately that she forgets what it feels like NOT to feel rotten. I hate it. 
I hope you get some answers soon. My heart hurts for both of you.


----------



## 723crossroads

I am praying for Jamie~ Niks. I am so sorry you are going through this again!:ghug:


----------



## xX_LittleMissValentine_Xx

Poor girl!
I can understand not wanting to be in hospital... But can she not understand how ill she is? I would have thought at 19 she would be old enough to accept she has to do something she doesn't want to do. When I've been really ill I have found being in hospital surprisingly comforting. 
I really hope you GP can do something for you on Monday. This must be so hard for you to watch her go through this. I know my mum freaks whenever I'm even slightly Ill, maybe more than I do!


----------



## Farmwife

Niks said:


> I agree MLP, but you don't know how stubborn my daughter is!  She has had enough of hospitals to last her a life time.
> QUOTE]
> 
> 
> 
> :ymad:There's no reasoning with stubbornness. Ask my hubby.:yfaint:
> 
> Like it or not her fight is what's keeping her alive.
> Like you said her pain has become her daily life.
> You could always do what my mom did....threaten to have her committed and then you'll get your way.:smile:


----------



## lsgs

This story is beyond belief, honestly. Although it doesn't really surprise me, sadly. 

I have had tummy problems since I was a kid and I remember last year when the prednisolone kicked in thinking, my god, this is how good life is supposed to be?! It is incredible the level of pain you adapt to having and eventually come to think of as 'normal'. I feel so sad for Jaime. 

As a sidenote, you mentioned faecal calprotectin... Mine has been consistently raised for a long time now and it hasn't really got me anywhere. Even with a raised result they won't treat you for anything even though all the research (some by my GI himself!) says  if it's high you probably have IBD. They really want to see it on a scope or a scan. Although one GI I saw was willing to say I had IBD, he just couldn't pinpoint where, but he did a LOT of research on the area so was a bit more clued up on it.


----------



## Niks

LMV - I think she has just got so used to it!  When I told her she needed to go to hospital after vomiting faeces she said 'Why? I vomit pretty much everything else' 

She's right.  In her world it is okay to vomit blood - it's just a torn stomach, it will heal.  It's okay to vomit crazy coloured bile.  It's okay to vomit everything she eats etc!  

When she has had small white bowel movements - 'oh don't worry about that'.  All the medical professionals really seem so blaze over her symptoms and often make her feel that she is making a fuss!!!  She does not find it comforting in hospital because of this.

I also feel that because she does not fit into a neat little box she is being palmed off, because they just don't know what is really wrong with her!

She has said that she will not go back to hospital until her clinic appointment (will see how that goes!)

She has promised to go and see her GP on Monday.  I am going to!  Maybe he will be able to talk to her as she does trust him and his judgement.

Haha  Farmwife!  Made me smile .  Unfortunately she gets it from me, surprised we aren't at logger heads all the time!

Isgs, thanks for this, I will ask about it, but I am guessing even if anything came back, you are right!


----------



## dannysmom

I am glad you are never going back to Swindon. Hospitals that irresponsible are too dangerous. I hope the GP can help get proper medical attention and encourage Jaime to stay at hospital. It is better for the doctors to see first hand just how miserable things are. Is there a better hospital for GI disorders than Oxford that is within a days drive for you? It seems like the Oxford doctors are in over their heads with Jaime's most atypical case.

I hope the rest of today and tomorrow are not too terrible. Good luck on Monday!


----------



## upsetmom

Niks If there's no chance of getting her to the hospital l'd ring up GI on Monday. Maybe if they knew the severity of her symptoms they'll get her in sooner.

:ghug:.. to both of you.


----------



## xX_LittleMissValentine_Xx

I do understand what you are saying Niks. Its worrying that someone can be so ill like that and be treated that way in hospitals in this country. We have come so far in medical science but until you get a solid diagnosis, or a Doctor who will really be on your side its just awful. 
When I was being diagnosed I was doing my A levels. When things had started to get more serious I was also getting used to it. My attendance at college was still perfect, when the doctor told me I needed to go for an ultasound scan, I told her I couldn't go because I had college! She said to me "This is serious Holly!" And I was shocked to hear her talk to me like that. 
I really hope your GP can do something for her. It sounds like she should be refusing to leave hospital instead of threatening to discharge herself!


----------



## Farmwife

How's things today?


----------



## Niks

She's back to vomiting loads. Even in night. First thing this morning was same as yesterday, but since been food/bile. She still says she doesn't 'feel'  too bad.

Definitely going to GP tomorrow!!


----------



## 723crossroads

Niks said:


> She's back to vomiting loads. Even in night. First thing this morning was same as yesterday, but since been food/bile. She still says she doesn't 'feel'  too bad.
> 
> Definitely going to GP tomorrow!!


Sorry Niks! Try to have a Happy Mother's day!! Thinking of you both and saying prayers.:ghug:


----------



## CarolinAlaska

Niks, you and Jaime are in my prayers!  Thinking of you both!  I can't believe we are still trying to get your daughter the help she needs 3 months later!  Grrr!  Your health system sucks!


----------



## Sascot

Good luck with the GP.  Wish they would do something!


----------



## Mehita

Niks, would you like us to all fly over, barricade docs from every specialty in a room, and hold a coup? We'll provide the muscle if you provide the wine.

Best of luck tomorrow!


----------



## Niks

Thank you everyone!

Mehita - Could you imagine their faces!!  lol.  I am thinking of taking back up to her appointment on 21st!  

We have early appointment this morning, it isn't her GP though, he's not here this week!!  

Will let you know what he says!  xx


----------



## Mylittlesunshine

Hi niks
So sorry jaime is still having problems.
I agree with carolin are health care sucks!!
Hope everything goes ok with the gp appointment.
Thinking of you both Hun x


----------



## Niks

GP sent her for blood tests and x-ray. Bloods all fine! Nothing new there.

X-ray showed severely backed up. No obvious obstruction so put it down to dysmotility.  They could keep her for obs and enemas! She can do that at home!! Apparently bowel dysmotility is really hard to treat, and there's not much anyone can do!! Great! Poor Jaime.


----------



## 723crossroads

That is terrible! Is there anything medwise that works for that?


----------



## QueenGothel

Sorry Niks!  Hang in there something's gotta give!  Keep at em!  Hugs to you and Jaime!


----------



## QueenGothel

I was on YouTube and stumbled upon some video blogs you might want to check out.

The author is this web blogger...

http://livingwithgastroparesis.com/


----------



## 723crossroads

Still hoping that some miracle happens for you  and Jamie. She can't live her whole life like this.


----------



## Niks

QueenGothel said:


> I was on YouTube and stumbled upon some video blogs you might want to check out.
> 
> The author is this web blogger...
> 
> http://livingwithgastroparesis.com/


Thank you!!  Working my way through some of her stuff.  She is trying to sell a lot of her books, videos etc, but there maybe some good info there.

xx


----------



## QueenGothel

If you go to YouTube you can watch the videos and avoid the selling pitches. . I didn't look through her web page just watched a couple videos on YouTube.


----------



## kimmidwife

Niks,
Thinking of you guys. Just wanted to pop in and say hi and see how Jaime is doing.


----------



## Mylittlesunshine

Hi niks
How's things going? How's jaime feeling
I hope things have settled a little for her
Thinking of you both 
Hugs x x


----------



## Niks

Hi! Thanks to you all for your kind thoughts..

Thanks QueenGothel, we are working through videos!! The young lady had a pace maker fitted and a lot of lifestyle changes.  Very interesting though, hopefully something may help Jaime.

She had a BM yesterday!! Like small grey pellets, but still!! The most for long time, and was 24 hours after colon prep and 6 senna!!  

She's still vomiting lots, but today no faeces!!  

I am worried about her mental health.  Lots of tears. She rang me earlier and couldn't  stop crying .  To be honest, her life right now really isn't fun!!


----------



## 723crossroads

Sorry to hear Jamie is so sad, but who could blame her? My gosh she could use some real answers and some real help. I can't believe after all this, nothing much has changed. There has to be an answer. I wish you could come over here to the Mayo Clinic! I know they would be able to help her.Sorry for you too as a mother going through the hell!:ghug:


----------



## Maree.

21st is less than a week now, hopefully they've got the approvals for the drug that they think might help and it does the trick for her (or at least shines some light on what is happening.)

I think one of the toughest things about being a parent with a sick child (or young adult) is those times when you need to put on a positive front to support them emotionally (when under the surface your just as distressed or more distressed than they are).

Our thoughts and prayers are with you Niks.


----------



## Devynnsmom

(((Niks))) I don't know how you do it. This poor girl has to get some relief.


----------



## Farmwife

How is she today?


----------



## Niks

She's the same. 

When she saw the surgeon at the weekend, he said that if she had crohn's she'd be much better off, because doctors would know what to try!!

I actually never thought I'd wish crohn's on my own child, but it is so hard when no one seems to be able to do anything! she would not be left in this state with an IBD diagnosis!!  Her GP still has crohn's as a diagnosis from November last year and was so confused when we said that was not the case!!

I really think they need to do a laparoscopy to look at where they saw tethering and where she gets the really bad pain! What does anyone else think of this?


----------



## 723crossroads

Sounds like a good plan to me and a pillcam as well.


----------



## Niks

I don't think the pillcam would go through!! X


----------



## 723crossroads

But it would prove a blockage and hopefully show them something. Laprosope though would be better if you can get them to do it.


----------



## Kimberly27

Niks-

Just caught up on all that has gone on.  I'm sorry Jaime is in so much distress.     I hope you get some answers soon.

Hang in there.  You are mighty strong to weather this storm.

Hugs.

Kimberly


----------



## Mehita

I hate the thought of her having to undergo surgery, yet they're finally offering something, a plan of action. If it is laparoscopic, it shouldn't be too awful. 

I don't know. I think if she were my daughter, I would do it. It doesn't seem like there are many other options? And maybe if the doctor on the 21st hears about this, he might see you sooner? 

What does Jaime think?


----------



## upsetmom

Niks said:


> I really think they need to do a laparoscopy to look at where they saw tethering and where she gets the really bad pain! What does anyone else think of this?


That sounds like a good idea.


----------



## Catherine

I think the question is more why wouldn't a laparoscopy be a good idea.  Are there any reasons why you would recommend against a laparoscopy.


----------



## Niks

I think you are all right!  I think this is what she needs.  Now I need to convince Oxford.  When she was in over the weekend, this is what the surgeon she saw thought needed to happen.


----------



## Catherine

Is the GP able to refer her to the Surgeon.


----------



## Niks

Catherine said:


> Is the GP able to refer her to the Surgeon.


He was in Swindon!  I think we need to go via Oxford.  Will talk to them next week about what he said x


----------



## Maree.

I tend to explore multiple avenues simultaneously, which is probably because I don't have a lot of faith in the medical system here.  

If I was in your position I'd get a referral to the Swindon surgeon too and try to get that path moving so that if Oxford don't have a what next plan that your happy with you do have another path of exploration ticking along in background.  (Cause everything takes so long!)

If your happy with the Oxford recommendation you can always cancel the appointment or defer it for later.


----------



## Sascot

Definitely worth having the laparoscopy - Amy had that done in December and it was quite a simple procedure.  I am surprised with all the pain she is in that they haven't done one yet - surely they can't declare they don't know what it is if they haven't done all relevant tests!!!  Crossing fingers and toes for you they get something organised.
Here's my favourite quote - "just because something isn't probable, doesn't mean it's not possible", just like my daughter's appendix causing severe pain in her bottom.  If Jaime's pain isn't being caused by something obvious to them, they should be thinking out the box.


----------



## Dexky

Since testing and imaging have failed to yield any relief for her, I think having a look is an excellent idea!  As always when I see a story like Jaime's, I am reminded of Dusty's Sarah!  It's mind blowing what they can miss with the tests!!  Good luck Niks!


----------



## dannysmom

I also support the laparoscopy ... perhaps they can biopsy the small intestine tissue too and do some testing for causes to her motility issues.  (It is the small intestine where Jaime has the motility issues, right?)


----------



## Niks

Jeanne, her stomach is slow emptying (from failed barium meal) and yes they have said it is small bowel dysmotility as well.  

Have just received a second letter from her old GI, the first one just basically lying and fobbing us off.  This time saying that he is not prepared to share care with Oxford and after consideration it is 'probably best that Oxford take her under their wing and investigate and mange as they feel fit'!

I will be taking the letter with me to her appointment next week!  I didn't think it was a very good idea either, and she certainly wouldn't want to ever see him!

I hate to think how Jaime is feeling right now, I am at breaking point


----------



## Jane and Nick

Hi Niks,
I have been reading about Jamie and my heart goes out to you. I have experienced the NHS system in the UK which is where I call home, also the private health system in the USA and now here in Malaysia. You must be at your wits end ! The fact that the old GI doesn't want to share information makes me mad, but may be its a good thing as you don't want the old diagnosis to cloud any future decisions. Is there some one at the NHS trust or hospital social worker you could contact and explain how (desperate) you are ? I know your not desperate, you seem to be incredibly strong and have been really proactive but it wouldn't hurt to try and get some one else on your side. I hope you get things sorted out and can find some one to help fight in your corner.
Sending positive thoughts and good luck your way. Kill them with kindness, I found it always helped to look a little helpless. 
X


----------



## DustyKat

Hey Niks...:hug::hug::hug: 

Yes, that was the point we reached with Sarah...surgery. Sarah's bloods finally did show she was septic the night before emergency surgery but that same weekend I spoke with the GP and Paediatrician over the phone and asked where we were going with all this and they both agreed that they may well have to "open her up".

I know an invasive procedure is never what we want but to me it can only be a win/win. If it shows nothing it offers a degree of piece of mind and you are no worse off. Of course if it does show something...

I know how you are feeling Niks and my thoughts are with you. :heart: 

Dusty. xxx


----------



## Kimberly27

Niks-

If you pursue a formal complaint or legal action (I don't know how it works in your country), would that make Swindon "bar" you from going there?  The good and bad with that idea.  Good: They would have to stop referring you there.  Bad: In a true emergency, you would be in a bad situation.

Kimberly


----------



## Clash

I don't have any advice. I'm just heartbroken at all you and J are having to go through. I hope the surgery comes through and they can find the source of J's problems and get her on the road to recovery. You and your beautiful daughter have been in my prayers.


----------



## Niks

After a day of tears and just total exhaustion from both of us yesterday.  Jaime decided to go to her friends 18th birthday party last night.

Kept expecting a call, or her through the door!  She lasted all night and got home just after 2am!!  YAY  :dance:  She even had a couple of cocktails!  (hasn't managed a drink at all since before Christmas)

Jaime said she vomited four times while out!  For most people that would be a good reason to head home, but in her words 'I have to get on with it Mum, or I would just be housebound'!  Very proud of her.  Really hope that one day she doesn't have to accept this as normal!


----------



## Maree.

I think she's right Niks.  She has to enjoy life to the best of her ability while working through her health problems.  Fantastic that she went and had a good time.


----------



## Niks

She has just found out that two of the girls - both 19, who were at the party last night got killed in a car crash last night  just horrendous.

Three boys 19 and 20 years old are critical.  What is going on in this horrible world!  Poor Jaime is obviously distraught


----------



## Farmwife

I'm so sorry Niks.
Life is precious and can be very short. She (J) along with the families of the victims are in my thoughts and prayers.


----------



## xX_LittleMissValentine_Xx

Oh its horrible. She really doesn't need this right now. I hope she doesn't get too depressed, she needs some hope and some feeling that life can get better.


----------



## Niks

She has just found out that the three boys are really close friends of her boyfriend.  She is so grateful that he wasn't in that car!  

One of them has a broken spine, another internal bleeding (not looking good), the last one more stable.  I just hope for all of their families sakes that they all make it.  Enough broken hearted people already


----------



## 723crossroads

Niks said:


> She has just found out that two of the girls - both 19, who were at the party last night got killed in a car crash last night  just horrendous.
> 
> Three boys 19 and 20 years old are critical.  What is going on in this horrible world!  Poor Jaime is obviously distraught


OMG Niks! Praying for Jamie and the families of lost teens. Terrible!:ghug:


----------



## Devynnsmom

OMG Niks, I'm so sorry to hear that. Thank God Jaime wasn't in the car. Prayers said for Jaime and the families of the teens. ((((hugs))))


----------



## my little penguin

Hugs


----------



## Jane and Nick

WOW ! What a strong wonderful girl you have raised. 
X


----------



## CarolinAlaska

Niks, all of this is tragic, from your daughter's symptoms and lack of treatment, to her having to "stick it out" while trying to enjoy a friend's party, to the death of other friends.  No wonder she is sad.

I am totally in support of that laparoscopy surgery!


----------



## Niks

Jaime has just announced that she did a largish soft BM this morning!  OMG!  This is a first for a very long time!  All this stress is obviously getting her bowels going!  

Confusing though, she has done nothing different!  (Apart from sneak a piece of normal and not gluten free pizza yesterday?!)  HMMMM!!!!


----------



## ChampsMom

Hey Niks... Just checking in... :hugs:


----------



## my little penguin

more :hug:


----------



## CarolinAlaska

Glad to hear it about the poo!  I hope it becomes a regular habit!


----------



## 723crossroads

Maybe she oughta cheat a little more often!!!


----------



## my little penguin

Niks
I thought she was on all formula until they figured out her issues????
I really can't imagine eating solids when nothing is moving through ???


----------



## Niks

MLP, no! She has fortisip supplements, but has small low fibre, gluten free meals! For what it's worth!! Mostly comes back up.   x


----------



## my little penguin

Just a thought has she tried all formula for a week or so?
No food
I only ask because when DS had issues when he was first dx 
Total EEN made everything liquid.
This was a kid who needed miralax daily for over a year.
Gluten free is very constipating for a normal gut.
May be something to ask her Gi


----------



## Niks

MLP - Thank you, I will ask again!  We did ask when she was getting so much pain a few weeks back and they didn't think it was a good idea!!  I think it might be!  xx


----------



## my little penguin

I mean at this point nothing else has worked .
Personally if it were my kiddo ( who is you get so I still get a say mind you )
I would want semi elemental to help get her body healthy and take the digestion stress off her system for a bit .


----------



## Niks

I do think you're right!  I just need to convince Jaime!  She hates fortisip, plus is vomiting them too now.  May need a tube, also will need A LOT of convincing.


----------



## Mehita

Was the appt today?


----------



## Niks

No tomorrow Mehita!  xx


----------



## Sascot

Good luck for the appointment!  It might be worth asking about the Modulen for EN.  Andrew is one of the only kids our nurse dealt with that couldn't drink the formula.  If you mix it with flavours of Crusha and make it really cold, then alot of kids manage to drink it.


----------



## 723crossroads

Hope you get your answer Niks and Jamie! Praying for you!:ghug:


----------



## Hope345

Niks,

I am so sorry to hear about all that your daughter and you have been through.
My heart goes out to both of you.


----------



## Kimberly27

Sending good thoughts your way today!  I hope you get a plan you can believe in.

Hugs

Kimberly


----------



## CarolinAlaska

my little penguin said:


> Just a thought has she tried all formula for a week or so?
> No food
> I only ask because when DS had issues when he was first dx
> Total EEN made everything liquid.
> This was a kid who needed miralax daily for over a year.
> Gluten free is very constipating for a normal gut.
> May be something to ask her Gi


I don't agree.  Gluten free diet is relieving for my constipated girls and takes away the diarrhea for Jaedyn and I...  FWIW

I do agree with the EEN - small amounts, slowly, around the clock (yep, gonna take a lot of convincing!)

By the way, since when does constipation/motility issue cause thickening of proximal duodenum?


----------



## Maree.

Liam's Pediatric GI who I don't have high level of trust in said that Liam had got worse because I'd added Ensure and reduced fibre which is a totally wrong approach for kids with motility issues.

I'm not convinced but pulling the Ensure and readding wheatbix, which Liam love's but gives him bad pain (about 30 min - 1 hour after he eats) seems to have fixed the constipation.  Liam is looking and feeling much better. 

I don't understand the diet connection stuff at all, its a total mystery to me.  Feels like every time I try to make a change I make things worse.


----------



## Niks

It is so hard to know what to do!  Jaime can't have gluten because of the coeliac diagnosis (although Oxford are not convinced of this, but have told her to stick with it for now). So at the moment not much say on that one.

She has been told to stay strictly low fibre.  6-8 small meals a day and 3 top up fortisip compact.  They are coming back up at the moment though.

My concern with EEN is, if it isn't just her stomach that's not emptying and is her bowels not pushing through, where is it going to go!  At the moment if it is stuck in her stomach it will come back up. Mind you, after vomiting faeces, I guess it can still come back up!

So confused.  I have everything crossed for this afternoon and have a list of questions!

Thanks for all your wishes xx


----------



## Maree.

Hoping and praying that the appointment goes really well and they come up with something else to try that's going to make a big difference.


----------



## Dexky

Good luck Niks!  I'm sure you will ask about the pacemaker possibility.  That has sounded the most promising in this journey.  Hoping and praying for something to give her some relief!


----------



## 723crossroads

Plz let us know asap when you get home what Dr. says. Thanx!!!!:ghug:Sending love and support and prayers for Jamie:heart:


----------



## Niks

I just don't know what to think!  

They are convinced that she does not need more tests.  Her symptoms are clear enough for them to diagnose bowel dysmotility.  He did say intestinal pseudo-obstruction is why her bowels block without an actual obstruction.  They couldn't answer me as to why Pred worked initially, and why she has had inflammation in the past.  Or why she had bloody mucussy diarrhea initially.

They have told her not to take morphine and tramadol, have taken amitriptyline away and replaced with Gabapenin.  She is also to take citramag daily!!!!  He assured me it will do her no harm and will clear her out, and help with the vomiting.

We were almost 2 hours late going in and in there for 2 hours!!  What ever I said, they just basically said that it is a really difficult condition to treat.  I KNOW!!!!  :ybatty:

Not happy!  GRRRRRRR


----------



## 723crossroads

How frustrating!!!!I guess all you can do is hope the citrimag works and gets things moving through. I really hope it works for her. Sorry it didn't go better for you both!:ghug:


----------



## dannysmom

What a long day!
I have some questions ...
Do they think their medication removal/suggestions should make her feel much better and allow her to eat enough?
How long did they want Jaime to try this plan? 
When is your next follow up?
Did they say what would be the next option if this plan does not work? (and she feels awful and is losing weight)
Did they take any blood tests to ensure electrolytes/nutritional status is adequate?

I hope their suggestions help and Jaime feels better!!!!


----------



## Niks

Jeanne - I had these questions too!!  

The drugs they are removing are pain relievers and can be really constipating!  So they are hoping that she will improve without them.  However I did point out that she wasn't on these drugs when all her problems started and how on earth is she supposed to manage the pain when she can't even stand up and is passing out!  The answer to this was just sympathetic noises!  GRRRR  

She has to try this for 4 - 6 weeks when her next appointment will be.  I am not happy about her taking colon prep daily for that long!!  Seems crazy!  Again they said we need to give it time to see if it will work for her.  They did not say what the next option will be.  I seriously don't think they have one!  Have been advised to keep in contact with dietician.  

No bloods taken!!!  Just x-ray, to double check no obstruction.  (we left before this was reviewed though, sure it just showed how backed up she is!)

Thank you, I really hope she feels better too, not holding my breath!  xx


----------



## ChampsMom

UGH!!  Nik's... How frustrating!!! No bloodwork?! What the heck??  Wish you would have gotten more answers... I pray the meds clear J out that she can eat (and enjoy it!)... How she manages not to say forget this and eat anything knowing it's coming up any ways, it's amazing... 

What did they say about MLP's idea about EEN?  

((((hugs)))) to you both!


----------



## my little penguin

Glad to hear they switched to Gabapentin
- it can help with a few things.
As far as constipating - even if she wasnt taking them at the beginning
they may be making things worse kwim.
dont think of it as 6 weeks - think of it as today-
just for today - see how it goes-
then rinse repeat.
not ideal
but i have found in GI land NOTHING is less than 4-6 weeks
since it always takes that long to see an improvement.
 a long time is 6 months.
not the best but ....


----------



## Maree.

Also hoping the Gabapentin will help, I've taken this in the past and as I did have a condition it was effective against.  The relief was virtually instantaneous.   My understanding of this drug is it doesn't build up in your system, so if it's going to work you should know this within a few days.

Niks I think this might be another reason to try to get her a referral to a pain clinic.  Her pain has been severe enough for long enough to warrant it and if her pain killer options are restricted because a lot of the options make her condition worse, I think that justifies needing to get a Pain Management Specialist involved.

Hopefully removing the other pain killers will help get her stomach working again.


----------



## Niks

Thanks guys!  MLP and Maree, I'm glad you think the  Gabapentin will help!  I had never heard of it.  And I guess you're right, 4-6 weeks isn't so long in the big scheme of things.

We did discuss pain clinic, but they are going to leave it until the next clinic and see how she is.  I really think they are hoping that giving her citramag daily (or if too much every other day) and cutting the pain relief will help.  I am doubtful, but hoping!

We discussed EN and EEN, because she has managed to gain a few pounds in the last 6 weeks (2.2 kg) they are going to leave it for now.  Again I did tell them that she had gained more than than initially, but is now loosing again!  I guess if we can get things moving through her then the vomiting will stop again.   So fingers crossed!  She has to remain on 6-8 small low residue meals a day.  I don't think she's ever managed anywhere near that, but at least it's something to aim for!


----------



## Maree.

Niks, most pain medications are really bad news for long term use from a health perspective. 

pain -- painkiller -- painkiller side effect -- more pain -- higher dose painkiller cycle is a really nasty one, and trying to break out of it is a good thing.

Gabapentin is an anti convulscent style pain killer it can be very effective in treating pain particularly if there is a nerve related aspect to the pain, eg: Fibromyalgia.  It doesn't work for all patient but definitely worth a try to see if it helps.

Pregablin is another drug in the same family which has a much longer effectiveness window, so worth discussing with your doctors if you find Gabapentin does help but the impact is regularly wearing off before the next dose is due.


----------



## kimmidwife

Hi Niks,
I have been MIA here this past week, so am just catching up. It is so frustrating to hear they are still really not doing anything for your poor girl. I dont know how they can diagnose dysmotility with out doing the proper testing. I met someone on Sunday whose son has this disorder and had a very thorough workup done. His Mom tried to get him into the cincinatti clinic but ended up taking him to wisconsin where they did a lot of testing. I think it is ridiculous for these doctors to diagnose like this. I am so frustrated for you guys.
I spoke with  friend of mine who is an anesthesilogist. He wanted to know if anyone talked with you about trying Erthromycin for increasing gastric motility. I have an article for you. I tried to find one that was not to medical to understand but had a hard time finding one. This was the best one I found.
 Here it is:
http://jac.oxfordjournals.org/content/59/3/347.full


----------



## Niks

Thanks Kim

Actually last time she was admitted over night in Oxford they did suggest this.  (I had completely forgotten!).  I am just really confused why they didn't suggest this 

We ended up seeing a couple of people on Tuesday, as I was upset and wasn't really getting questions answered, so the GI that we saw went and got back up!! 

I am going to go through absolutely everything.  Procedures, admittances, results, symptoms - what has been discussed with other Doctors and e-mail everything in a date and factual order through to the Consultant who eventually came to see us.  I think when you are pretty emotional and face to face, things get confusing.   So many things have happened and changed over the last 10 months!  And even years ago when things started.  Going to go right back!  

I don't know whether it will help, but maybe if it is written down in black and white in a factual and not emotional way, he may be able to work through it!

Here's hoping


----------



## Niks

After going through everything that has happened with J and basically going through everything on here!  So glad I updated her symptoms etc, because it is so easy to forget things.  Right up until February, she was having bloody mucousy stools!  This is not dysmotility!  It seems that the Gastro team are basing this on her MRE being clear.  

I still think that being on varying strengths of steroids for 6 months is the reason for there being no inflammation! I really hope that they get to look at my e-mail, her overall symptoms and take it seriously!


----------



## 723crossroads

I agree with you too. I still wished they'd do the pillcam just to be safe. I swear they save it for absolutely last like it cost's a million dollars!


----------



## kimmidwife

Niks
I think that was a great idea.you are right sometimes it takes things being on black and white for them to wake up and pay attention.I know as a nurse practitioner seeing things on black and white always helped me. what exactly is a consultant, what is their job? I am wondering if it is like a social worker?


----------



## Niks

Kim the Gastroenterology Consultant is basically the top Gastroenterology Guy who was at clinic on Tuesday!  There are several of them at Oxford, we have never seen this one!  I really think this doesn't help.  Having to go through everything is exhausting and very frustrating, and yet they only seem to hear what is happening NOW!  :ybatty:

When the original Doctor went out to get him, Jaime told me to calm down and not be angry with him as it wasn't his fault.  No I guess it wasn't but my goodness, why do they give her yet another Doctor to review her!?


----------



## 723crossroads

Niks said:


> Kim the Gastroenterology Consultant is basically the top Gastroenterology Guy who was at clinic on Tuesday!  There are several of them at Oxford, we have never seen this one!  I really think this doesn't help.  Having to go through everything is exhausting and very frustrating, and yet they only seem to hear what is happening NOW!  :ybatty:
> 
> When the original Doctor went out to get him, Jaime told me to calm down and not be angry with him as it wasn't his fault.  No I guess it wasn't but my goodness, why do they give her yet another Doctor to review her!?


Because they are clueless and don't know what to do!:ymad:


----------



## kimmidwife

ok do consultant means doctor there. is their someone life
a case manner or advocate who could help? also I was thinning call the crohns and colitis foundation of UK. maybe they could help be an advocate for her.it seems to me she needs someone to fight for her that has experience with battling your medical system.


----------



## Niks

Yes Consultant is just a top Doctor in that field!  I don't know!  It's tricky because she was originally 'thought' to have crohn's and it is now on her medical records that she does!  Now though, they say she doesn't have an IBD! 

I am going to see if I get a reply from the e-mail.  If I don't I may contact Crohn's and Colitis Foundation to see if they have any advise or ideas.  Thank you, that is a good idea!

xx


----------



## 723crossroads

Niks, I was diagnosed with crohn's in 2011,had ulcers in ileum and colon. Now last catscan, no ulcers, so he is calling it IBS! Can crohn's change to IBS? I never thought so!


----------



## Niks

Surely that is just remission??  That is just crazy!!  :ghug:


----------



## 723crossroads

I thought so too. But this Dr. isn't the one who diagnosed me. So, it's like you said. They forget everything that happened in the past and just go by what they see now, which is BS!


----------



## Niks

723crossroads said:


> I thought so too. But this Dr. isn't the one who diagnosed me. So, it's like you said. They forget everything that happened in the past and just go by what they see now, which is BS!


So what meds are you on?  Is he stopping them?  :eek2:


----------



## kimmidwife

732crossroads
that is just ridiculous.that sounds like you are in remission. have you thought about a second opinion or a new doctor?


----------



## Niks

Hey, thought I'd update quickly on Jaime!  It has taken a whole week of every other day citramag, but finally things happening and now doing what it should!  She also vomited bright green bile!  But hey, hopefully that will now settle as it's moving in the right direction.  

Hopefully her vomiting will settle now.  I just don't know how long it is good to do this for!


----------



## my little penguin

GI things take a long time so what may seem like forever may not be needed in a few months or a year or two.
DS had to have a capful or more of miralax every day for two years.
he has gone over 8 months without any.
we are only using it now to keep his prolapse from getting worse.
hope it continues.
getting something that works is key-
at least for us
we worry about side effects after we get things under control for a while.
since the current situation is not acceptable KWIM


----------



## 723crossroads

Niks said:


> Hey, thought I'd update quickly on Jaime!  It has taken a whole week of every other day citramag, but finally things happening and now doing what it should!  She also vomited bright green bile!  But hey, hopefully that will now settle as it's moving in the right direction.
> 
> Hopefully her vomiting will settle now.  I just don't know how long it is good to do this for!


Really hoping things get better and better. I don't understand the bile coming up, that still seems like something is wrong to me. But, I'm not a Dr. Praying now it gets better and better!:ghug:


----------



## Niks

Green Bile is a sign of obstruction!  But that is what she presents like, even though she doesn't have an obstruction.  I guess now that the colon prep is finally working through that hopefully that will start to ease off!  Over the last week her vomiting has been worse than ever :eek2:


----------



## CarolinAlaska

Hi Niks, I'm so sorry the GI appt didn't go successfully.  I am hoping and praying that their treatment gets her bowels moving to such a point that it takes the dysmobility out of the picture enough to find the real source of the problem.  Do they still have her on an antinausea med?  Could you list all the meds she is currently on?  Jaedyn gets good abdominal pain relief from an essential oil blend called "DigestZen" from DoTerra.  Do you have anything like that over there to help with the pain?  Did they take Jamie off her morphine cold turkey after all those months of using it, or did they wean her?  That alone would make her sick and vomiting worse!  Fortunately, people don't usually die from withdrawals, but their life is hell until they get through it.  Is she having any other symptoms of withdrawal?  I agree with getting her off of the morphine.  It is very bad stuff and only will give her a life of misery.  I pray she will find a way to get away from her pain and that she won't have any long-term effects from what the morphine could already have done to her system.  The morphine itself could be painting the whole dysmotility syndrome alone.  I know it is unfathomable to consider living without it, but you have to understand how bad that stuff is on your little girl.

Praying that Jamie's symptoms will start settling down and that she will find healing and optimal GI function in a pain-free life.  Sorry I've been MIA too.


----------



## Niks

Hey Carol

Jaime was only taking the morphine occasionally.  Mainly at work if she really couldn't bear it, so she hasn't suffered with coming off it.  You are right, it could be masking other things!

She takes:  

Metoclopramide X 3 times daily
Gabapentin 300mg x 3 times daily
Buscopan x 3 times daily
Citramag daily (has been taking this every other day)
Sodium Docusate (lunctime and bedtime)
Magnesium Hydroxide 45mg at bedtime

Since starting Gabapentin she says she feels really 'spaced out', with some visual disturbances!  Since I emailed the Doctor she saw, his secretary rang her and said if there are any problems to call her directly and she will get hold of him.  She is going to ask her about this side effect, she finds it really hard to concentrate.  Do you think this could be stopping the Oramorph or starting Gabapentin?


----------



## CarolinAlaska

Probably the gabapentin, if she wasn't taking oramorph on a daily basis.  Usually I try to start gabapentin a little slower and work up to the full dose due to side effects like these.  I would suggest she ask her doc if she can have a plan to work up to this dose...


----------



## Maree.

Agree sound like classic Gabapentin symptoms.  For me it really slowed down reaction times  and the pace at which I could think (driving really wasn't an option while taking it).  It also made me incredibly clumsy and I'd wake feeling like I had a really severe hangover but it was amazingly effective for pain.


----------



## kimmidwife

Niks,
Thanks for the update was thinking about you guys. I am really hoping you guys get some answers finally. Keep us posted. Sending hugs to both of you!


----------



## Niks

Hmm, that's exactly what she said this morning!  She said she felt like she had a really bad hangover.  She was out with friends last night, but ended up coming back early because she was so sick, dizzy and she passed out.  She only drank soft drinks, but thought that someone had spiked her drink!

I am just glad that after a week of very small rabbit like BM's that the Citramag is finally working.  Goodness only knows what she will need to take if she ever needs to have a colonoscopy!


----------



## 723crossroads

My Gastro put me on a med for pain and gas etc... Can't remember the name and I am staying at my sister's dogsitting. So I can't go look. But it sent me into spins when I laid down and got so sick. We were on a weekend vacation and I ended up in the bathroom half the night vomiting and so sick from it. Nice of the Dr. to tell me of these possible side effects. Even the next day, I still was sick and barely made it to go to a restaurant and threw up before we went inside. I was so embarrassed because it was also a bar and everyone probably thought I was drunk!!!

I remember now, it was hyocyamine. Ever hear of it???
They also put me on Tramadol and couldn't take that or Neurontin for fybro pain. I am sensitive to drugs.  Very sensitive!


----------



## Niks

Jaime's doctor didn't say anything either.  He just started her on 1 tablet day 1, 2 day 2 and now 3 daily.  The leaflet doesn't really say much about these side effects either!


----------



## 723crossroads

Niks said:


> Jaime's doctor didn't say anything either.  He just started her on 1 tablet day 1, 2 day 2 and now 3 daily.  The leaflet doesn't really say much about these side effects either!


She is on neurontin then right? That is what it is called here. I felt like I was outside of my body when I took that and so weird! Had to stop. Hyocyamine was the one that made me so dizzy and sick.


----------



## Maree.

Because I was taking Gabapentin for neuropathic pain the doses we're much higher, but the side effects your both describing sound very familiar.  Does she think it is helping with the pain?

FYI My understanding is it's important to not have too big a gap between your evening and morning doses,  so should be last thing at night and first thing when you wake.   (It wasn't a problem I had as I took it 4 hrly, 6 times a day.


----------



## Niks

She is struggling with it.  So far she doesn't think it has helped the pain, and when she's really bad doesn't have any other option.


----------



## Maree.

I'm not sure how long I'd persist with it if its not working before going back to your doctor and discussing alternatives.  There are only a limited set of sorts of pain it works for and this may simply not be one of them.

I never got 4 hour effective windows with gabapentin, even with max doses (more like 2 hrs) but when it did kick in, it was like flicking a shut off switch for the pain.  If she's not noticing a marked difference with it I'd think the side effects wouldn't be worth it.


----------



## Niks

Another question!

Is it possible that Gabapentin could cause Lockjaw like symptoms?  She is complaining that her jaw hurts so much and is finding it hard to try and eat anything.  She has no reason for this to happen, no injury!?  She is really drowsy tonight, very pale, can barely open her eyes.  says things keep moving.  Really don't like these side effects at all! :eek2:


----------



## Clash

I once had a neuralgia from an infected tooth, after two shots of dilaudid, 3 or 4 percocet and no relief from the pain which was so bad I would pass out, the ER doc gave me neurontin, it stopped the pain where the other meds wouldn't touch it but probably due to the fact that it was from a neuralgia. 

I would definitely get in touch with the docs about the jaw pain. I know neurontin is used for things like trigeminal neuralgia which involves the nerves in the jaw, cheek, teeth, gums etc so not sure what the connection would be but I the docs have some answers, poor thing has been through so much!


----------



## Niks

Am wondering if she has picked up a virus.  She has started getting a temperature and she has a raging headache!  Maybe it's not all the new meds.


----------



## Sascot

I would be very wary of the gabapentin.  My mom took it for a week and she had to come off it.  It made her feel very irritable, spaced out, her concentration was shot and had a headache.  It all went away within 2 days of stopping the gabapentin.


----------



## Niks

Sascot, that's what she's been like!  She has just got progressively worse today. :eek2:

She is going to see the GP tomorrow, see what he thinks xx


----------



## happy

The jaw symptoms might be from all of the vomiting.


----------



## my little penguin

Good idea to see the gp but everyone is different
She may need to up the dose slowly.
DS takes hydrocyamine alot - no real issues unless its combined with zofran.
For DS only a Neuro would prescribe gabopentin - even the Gi wouldn't touch it 
Since they don't have to deal with the drug often.
Hope the gp can help


----------



## xmdmom

I read that feeling drowsy, dizziness,and  lack or coordination are pretty common with gabapentin. Fever can also occur as a side effect.  Visual disturbances occur but less frequently.  Good that she will see the doctor tomorrow.  Hope she gets it sorted out and is feeling better soon!


----------



## 723crossroads

I would still get her to the Dr.s as soon as possible. She sounds really bad and dehydrated!:blush:


----------



## Niks

He thinks to continue with meds. She has a sinus infection! Hopefully will clear up quickly


----------



## 723crossroads

Poor girl! Sending hugs!:ghug:


----------



## DanceMom

Sinus infections do tend to make my jaw/teeth hurt.  Hope she feels better soon!


----------



## Niks

Just relieved that it is just a normal infection, that will hopefully clear up soon.  Hope the meds start to work soon too !!


----------



## CarolinAlaska

I hope this is the right answer and that it works well for her!


----------



## Farmwife

Wondering how y'all are doing?


----------



## Niks

Hey!  Thanks for checking in on us!  

She's had a sinus infection and now tonsillitis!  Poor thing.  However her bowels have been moving!  She did have mucous and blood this evening though, that's the first time since about February..  

Hmmm, if it's not one thing hey!  I guess it is good that things are moving through.  Her vomiting is better and reduced to 4-6 times daily.  Much better than 12 plus times.  So a mixed bag really :ybatty:


----------



## 723crossroads

It's still sad you are celebrating only vomiting up to 6 times a day!:yfaint:
Poor girl!:rosette2:


----------



## kimmidwife

Hi Niks,
I took neurontin and had those same side effects. Supposedly they go away but I could not function so stopped taking it. It did nothing for my pain anyway.


----------



## Niks

Kim, she feels like she's hallucinating!  It's really not great.  I don't think it's doing anything for her either, but she has been asked to keep going for a few weeks!  

We'll see.  On a positive note, she has managed BM's pretty much daily!  Some bloody, but at least not completely blocked up now.  

She has vomited some blood today.  I guess like last time she probably has a tear in her stomach from vomiting.  Funny how now it is just 'one of those things'.  We used to be horrified!


----------



## 723crossroads

I felt that way too on neurontin. Like I was outside myself when I went to the store and the lights had a halo around them with rainbows! Weirdest experience!!!:yrolleyes:


----------



## my little penguin

Maybe once she gets more regular she won't need the gabopentin .
Glad to hear things are moving again


----------



## Niks

J went to see GP this morning. He feels that if there is any benefit at all from Gabopentin, it is only slight. She doesn't think it's helping with pain. He thinks side effects are just too much and have only worsened in last week, even with sinus infection easing. She is going to wean off from today.

GP told her to.leave a message at Oxford, not sure that they'll have another plan, but relieved that she's stopping this!


----------



## 723crossroads

Amen to that! I D K how anyone can take it! Hope they find something else. But be careful, other drugs do the same thing that are similar.


----------



## Maree.

Stopping it sounds like a really good idea.  I know there is a lot of negativity about pain CBT but I think it might be an option worth considering for Jaime.

My pain management clinic said CBT works best for type A personality people, who've explored the other pain management options and found that the relief they bring just isn't worth the side effects.  

Initially the trade of with CBT is increased general well being & function (from removing painkiller side effects) & sense of achievement (from the planned living component) against higher levels of pain.  Which is a trade off thats much easier to handle for people who get really adverse effects from pain killers and are at that point where they just want to get on with living.


----------



## 723crossroads

Sorry but what is CBT?


----------



## Maree.

Cognitive Behavioural Therapy, its the pscyhological approach to learning todeal with chronic severe (or extreme) pain.  Normally taught by multidisciplinary teams in pain management centers.  

I had CBT for my Atypical Neuralgia at the end of two years on a cocktail of pain killers and for me personally it was just brilliant, it didn't take the pain away (not in the short term anyway) but it gave me my life back, as it gave me the skills to cope with my pain levels, so I could cope without all the drugs and there debilitating side effects.


----------



## Niks

Thanks Maree, definitely worth looking in to!! 

Jaime really relieved she's dropping tablets. She hates meds. She in her words 'had a normalish poo and only vomited 3  times today!!! Whooop whoop!! Lol. Pretty exciting stuff!

On a very exciting note we are going to see RIHANNA on Monday!!! We can't wait!! Fingers and everything else crossed that she feels ok on Monday! Xx


----------



## kimmidwife

I have done CBT and it helped me for a long time. Though recently the pain from my nerve disorder has gotten so bad it is not really working anymore  I recommend trying it although with Jaime's level of pain at this point I don't know if it would help. I think it is ridiculous that they don't keep trying to find a cause of the pain. They need to keep searching and find an answer!


----------



## Niks

GRRRRR! Oxford just called J saying they didn't prescribe Gabopentin! They said it was GP and she should never have been on it! Makes me so cross that they clearly don't have accurate records  of her last appointment or even what they prescribed!!!


----------



## 723crossroads

What is CBT?


----------



## Maree.

See my post #817 for answer to what CBT is.


----------



## Kimberly27

Niks,

Are the records from your GP digital?  Maybe she needs a GP at Oxford to facilitate better communication

Kimberly


----------



## kimmidwife

That is crazy! WHat is wrong with these doctors?


----------



## DustyKat

Oh man Niks! Your poor girl. :yfaint: 

I hope she starts to feel better now that she is getting off the Gabopentin...but what the hell is the deal with Oxford! :quack: 

Sending loads and loads of luck and healing thoughts that Monday is a goer! Woohoo! 

Dusty. xxx


----------



## Ands

Niks, I know the last thing you want to do is move care again but just a thought how far would Southampton be for you?  

DS is under pead GI team and I can't fault them. From the day he was admitted to ALL out-patient appts we have always seen the same consultant.  Also, if I've been concerned on a Fri, he has seen us on a Monday.  He has said that if we are happy to make the journey (1h and 45 mins) each way for us he will see us.

The lack of care and support your have been receiving highlights all the wrong things with the NHS!

Thoughts are with you.

Xxxx


----------



## Niks

Ands - I really don't know anymore!  Southhampton is only an hour and a half away.  Her next appointment is 2nd July, we'll see how that goes, but I think you're right, it is much harder when she sees a different doctor every time!

Dusty thanks ! We can't wait .  Fingers crossed xx

Anyway the last couple of days Jaime has had diarrhea!!  I can't believe it.  She has cut out all laxatives except Magnesium Hydroxide.  Only one or two each day, but mucousy with some blood.  Sickness better, around four times a day.  Pain constant, but severity changes.  She is preferring diarrhea to the severe constipation, but I just can't believe how she has gone from one extreme to the other!  :ybatty:


----------



## Farmwife

Yes I would say that Grace would prefer the diarrhea to constipation.
Now that her bowels are moving a bit, hopefully her GI track will start to heal up and she'll start feeling better. Of course you know that answers still  have to be fought for.
Is she still working?


----------



## Niks

FW, yes she's still working, is easier now not vomiting so much!

Not holding my breath with new investigations, but she certainly isn't back to normal!


----------



## 723crossroads

Lets hope she keeps getting better and better so she can have her life back.:ghug:


----------



## kimmidwife

Niks,
Didn't she have diarrhea at the beginning of all this? This is what makes me suspect she does not have a motility disorder and an IBD disorder (plus the inflamation seen on early scans) Now I am not a GI doctor this is just my opinion but sounds like these specialists are barking up the wrong tree (American Saying, LOL). Have you called the GI to tell them this new development? I would let them know ASAP.


----------



## CarolinAlaska

It's been my feeling all along that they are misdiagnosing her.  First it was celiac, then they load her up with oramorph and call it motility disorder...  the left hand doesn't know what the right hand is doing.  I'm glad she is back to moving her stools.  Perhaps now a pill cam might be in her future.  Sometimes, however, diarrhea can be from only liquid getting around an obstruction... if there is a lot of pain involved constantly, this could be the case.

Hugs to both of you.


----------



## Niks

Yes we seem to have done a full circle! Here's hoping someone listens now!! X


----------



## CarolinAlaska

Niks said:


> Yes we seem to have done a full circle! Here's hoping someone listens now!! X


Here! Here!


----------



## Dexky

Niks said:


> GRRRRR! Oxford just called J saying they didn't prescribe Gabopentin! They said it was GP and she should never have been on it! Makes me so cross that they clearly don't have accurate records  of her last appointment or even what they prescribed!!!


I think Jaime's docs could use a little CBT!  They don't seem to know how to deal with chronic illness either….&*))&^% morons!

I'm glad she's moving Niks albeit maybe a little too fast.  It's got to be such a relief for her.  Now to stop the nausea and find a happy medium for her!


----------



## Niks

Dexky said:


> I think Jaime's docs could use a little CBT!  They don't seem to know how to deal with chronic illness either….&*))&^% morons!


Haha!!  Made me laugh!  :rof: 

She again has had very loose bowels with some blood!  She is finding this much easier to deal with, but it isn't right!  Has left a message with Oxford, as not sure what to do regarding medication!  I think ditch the lot!


----------



## Sascot

Hope your weekend isn't too bad either.  It never ceases to amaze me how the docs can leave someone suffering as long as they do. Thinking of you both


----------



## Maree.

I can see why ditch the lot is an appealing idea given that oramorph was clouding the picture so much that doctors had lost sight of what the original problem actually was.

What medications is she still taking?


----------



## Niks

Maree, she is only taking Metoclopramide, Buscopan and Magnesium Hydroxide , although at the moment has stopped with the Magnesium because of very loose bowels!

She has also stopped sodium docusate, senna and citramag.  Plus all the other things she has recently been on, so I guess just the two isn't so bad!


----------



## DustyKat

Thinking of you and your girl Niks and wishing more than anything that you had solid answers and soon! So not fair.  

Dusty. :hug:


----------



## vtfamily

Niks,

I've been so busy, tending to Gus' needs through this post surgical period and trying to get back to a "normal" life, that I've missed quite a few updates.  Though I want you to know that I kept both you and Jamie in my thoughts and prayers.  I wish Jamie were feeling better.  The duration of your ordeal has to be taking a toll.  You've shown yourself to be a strong woman and mother.  I really do hope you both find relief soon!!  No family should have to endure this kind of uncertainty.

Hugs to you both!
Cheryl


----------



## Niks

Aw thanks Cheryl, I really hope that Gus is recovering well.

Hugs to you two too xxx   :ghug:


----------



## 723crossroads

Just was thinking of you guys and hoping Jamie is doing better!:ghug:


----------



## Kimberly27

I like the idea of finding a practice where she sees the same doctor.  You both deserve to have quality care and the opportunity to develop a relationship with someone you can trust.  And...an answer!

Hang in there.  We are all sending loving thoughts.

Kimberly


----------



## CarolinAlaska

Hi Niks.  I agree that she seems better off, but still she isn't good.  At least she isn't vomiting poop.  Now it is time for a realistic diagnosis.  If Oxford doesn't stand up to the plate and test her some more, it is time to move on.  Has she had a fecal calprotectin?  What are her inflammatory markers saying (Sed rate, C-reactive protein)?  Is she getting anemic?  One thing positive about all this, is that you are getting an education about your daughter and her condition and you know a lot of things that don't work!  <<Hugs>>


----------



## Niks

Well good news is we had an amazing time at Rihanna!  Jaime managed the entire Concert, at the front!   

Not such good news is I have received a letter from one of the Registrars that saw Jaime at her last appointment.  His diagnosis, 1.  Coeliac Disease (ok).  2. Severe Constipation  3. Recurrent Vomiting.

Really???  How is this a diagnosis!  It is just her symptoms!  I am livid and have just e-mailed the secretary.  Not only this, he put that he advised her to stop Senna - NO HE DIDN'T!  And he prescribed Pregabalin.  He prescribed Gabopentin.  He hand wrote the prescription!  OMG what is the matter with this man!  Maybe it's the same drug?  :ymad:  I am gobsmacked and really don't know what to do.  

:confused2:


----------



## Niks

CarolinAlaska said:


> Hi Niks.  I agree that she seems better off, but still she isn't good.  At least she isn't vomiting poop.  Now it is time for a realistic diagnosis.  If Oxford doesn't stand up to the plate and test her some more, it is time to move on.  Has she had a fecal calprotectin?  What are her inflammatory markers saying (Sed rate, C-reactive protein)?  Is she getting anemic?  One thing positive about all this, is that you are getting an education about your daughter and her condition and you know a lot of things that don't work!  <<Hugs>>


Carol, her inflammatory markers are always normal!  Have no idea about the others.  No anaemia either.  I think this is why Doctors are not taking this seriously, her bloods are normally fine.  They still haven't done faecal calprotectin!  GRRRRRRR


----------



## upsetmom

Niks l think its time to move on and find another DR. 
I don't think she'll ever get diagnosed with anything with this DR.

I'm glad yous had a good time at the concert..:thumright:


----------



## Maree.

Pregablin is called Lyrica it's the same drug family but it's a different drug.


----------



## Niks

Thanks Maree!  It's not the same one though, so not sure why he has put that on her letter!

Jaime has just had a call from Oxford saying they have been trying to get hold of her for 'days' and want to see her on Thursday at 7pm after their clinic!?  

Errrr, she has had no missed calls, strange that this is after my e-mail querying all the mistakes on the letter!  Anyway, we're going to go, although not sure what they can tell her to her face and not on the phone!  Strange !!!
Her next appointment is only a few weeks away, and at the moment she isn't anywhere near as sick as she has been!

:confused2:


----------



## 723crossroads

Maybe they actually found something and want to tell you face to face. Wouldn'tthat be a shocker?


----------



## Niks

723crossroads said:


> Maybe they actually found something and want to tell you face to face. Wouldn'tthat be a shocker?


Haha!  They haven't tested for anything else!  Not even bloods, she just had an x-ray which showed extensive faecal loading, but all her x-rays to date have!!


----------



## fosterschick

Hi niks , I don't know if this helps , I paid for a private fecal calprotectin from oxford screening practice u can finbd it on the internet , it was 30 pound. I just wanted to kno ,and its this result that has pushed my docs to start more testing !  Xx


----------



## CarolinAlaska

Niks said:


> Thanks Maree!  It's not the same one though, so not sure why he has put that on her letter!
> 
> Jaime has just had a call from Oxford saying they have been trying to get hold of her for 'days' and want to see her on Thursday at 7pm after their clinic!?
> 
> Errrr, she has had no missed calls, strange that this is after my e-mail querying all the mistakes on the letter!  Anyway, we're going to go, although not sure what they can tell her to her face and not on the phone!  Strange !!!
> Her next appointment is only a few weeks away, and at the moment she isn't anywhere near as sick as she has been!
> 
> :confused2:


Well, at least this is something!  Even if she isn't as sick as she has been in the past, she does have bloody diarrhea.  She's symptomatic although she has been off of gluten for ages.  She doesn't have constipation because she is off of the constipating meds.  Try to look at things for what they are, and not what they aren't.  Try preparing for her appt on Thursday with some of these things:  She is doing a little better, but these are her current symptoms: 1._______2.___________3.__________...  These are the symptoms that she started with:  1._________ 2.___________ 3. __________...  These are my current questions:...  Tests we'd like to have done now that she isn't stopped up:...(ie Fecal calprotectin, pill cam)  Has IBD been definitively ruled out? and if so, how...

I hope it all goes well!  Let us know!


----------



## Niks

fosterschick said:


> Hi niks , I don't know if this helps , I paid for a private fecal calprotectin from oxford screening practice u can finbd it on the internet , it was 30 pound. I just wanted to kno ,and its this result that has pushed my docs to start more testing !  Xx


Thank you!  I will be looking at this right now!    xx


----------



## Niks

Thanks Carol.  I am intrigued!  When she was really sick they would not bring her appointment forward.  We have not asked for this, but I did say on e-mail to the Secretary what is going on now.

We'll see!

xx


----------



## DustyKat

Wow Niks! :yfaint: 

I hope you get some answers! :goodluck: 

Dusty. xxx


----------



## Farmwife

Could it be Niks that they want the appointment to address the letter?

I'm glad she's feeling a wee bit better. Make sure to fatten her up if you can.


----------



## Kimberly27

Just a thought...

Maybe you should insist on an allergy panel to rule out reactions to other foods.  She has been vomiting so often it is not an exaggeration to say you suspect she could be reacting to other foods.

I've been gluten free for 8 years, and unfortunately I can't have dairy either (casein- the protein, not a lactose reaction).  Is it possible that Jaime is reacting to dairy?  The protein chains of both gluten and casein are extremely similar.

Also, maybe you should call and have them run a celiac blood panel to get some baseline numbers.  How extreme was the damage?  It seems like if she's been gluten free this long, things should have been better.  Maybe because the diagnosis was challenged, Jaime hasn't been as diligent with following the diet: Salad dressings, make-up, etc.  What do you think?

Since you finally will have your time with the doctors, these blood tests and allergy panel results should help guide you towards an answer.  

Hugs!  Good luck!

Kimberly


----------



## Niks

Kimberly27 said:


> Also, maybe you should call and have them run a celiac blood panel to get some baseline numbers.  How extreme was the damage?


Kimberly, her coeliac bloods have always been NEGATIVE!  She was diagnosed back in December with biopsies that came back with 'coeliac tendencies'  These were not visible during her procedure, but were found in biopsies.  In March, with gluten free diet these were completely clear, and no signs of disease at all. And yet still very sick in March!  I also know that if there is extensive damage that it is clearly visible during scopes!  

I don't believe that it is coeliac disease that is making her so poorly.  She has not however been tested for any other allergies.  So you could have a point!  I have previously asked, with no one thinking this was a possibility, but surely it's worth some tests to check?

FW you could be right!  Maybe covering their own backs too, as there were so many mistakes on the letter they sent us and also the prescribed medication had to be stopped because of such severe side effects.  I guess we will only know tomorrow.


----------



## Kimberly27

Niks said:


> She has not however been tested for any other allergies.  So you could have a point!  I have previously asked, with no one thinking this was a possibility, but surely it's worth some tests to check?



Yes, I would insist on it.  If you can have it done before the appointment, that would be best.

How frustrating for you both!

Kimberly


----------



## Niks

We are going tomorrow night, but her next actual appointment is 2nd July, so if we can get tests done before that it might be good!  Will discuss it tomorrow and let you know what he thinks :ybatty:  xx


----------



## Tesscorm

I'm going to suggest you write down her symptoms as caroleinalaska suggested (prior, current), your questions and the tests you would like done.  Leave space below the questions and tests so you can write the answers and their reasons why 'not' to do any of the tests.  Also, give the doctor a copy of the questions so that he clearly knows the history, your concerns and your requests.  I don't know about there but, at least with Stephen's Ped GI, I learned that every email I sent or concerns I expressed were included in his file (they were all in the copy of the file when S transferred to adult GI).  

It might be a good idea to have a 'paper trail' (as you mentioned your previous email seemed to get the ball rolling)... perhaps email the summary/questions/tests to the doctor tomorrow before the apptmt.  But, with a 'nice' note so you're not putting them in a 'defensive' mood before you get there, ie 'These are some of the concerns I would appreciate discussing at today's apptmt, I thought Dr. X might find it helpful to have a copy before we meet'...  If you don't think this is a good idea, you could send a 'follow-up' email after the apptmt which would include their answers as well, with a note saying 'this is my understanding of our conversation and your recommendations, please advise if I am incorrect in my understanding'.  

With Stephen's ped GI, I had a issue re what they had told me re MRE results, phone calls/questions, etc. went back and forth, nurse was being contradictory, etc. I finally sent an email with very pointed questions, specifically asking if my understanding was correct (because if it was, I wasn't happy!), etc....  they moved up our apptmt and it was the longest apptmt we ever had as the GI went through all my concerns and actually explained all in detail.

You certainly don't want a tense relationship with your doctor  but, if the alternative is that Jamie isn't getting the necessary care, you might have to do something like this to be sure they're on top of things.

Just a suggestion...  certainly don't do anything you're not comfortable with! 

:ghug:


----------



## Niks

Thanks Tess.  I think you're right, they do seem to be acting more on what I've e-mailed (twice now since last appointment)  I am going to copy off e-mails and write questions.  I think it is a good idea to follow up with an e-mail!  I did last time, but only because I was so frustrated that they were not listening to what had gone on previously!

Thanks again


----------



## Niks

Ok  so not long back from appointment.  FW you were right, he wanted to address letter. 

Basically apologised for mistakes and 'diagnosis' (or not!)  He went through everything pretty thoroughly  Is NOT up for any more testing right now, but he says if anything changes then he will.

He thinks that there was clearly some inflammation, as previous tests show.  However in March there was no evidence of any so he feels that what ever that was that it has gone.  

He admitted that it is often hard to diagnose IBDs but they don't like to label people without concrete evidence.

So what is going on now?!  He feels that her bowels are just sensitive and can react with either constipation or diahrrea .  He explained it for a long time and in depth, but basically this it what it amounts to!

The pain - he thinks that some people react differently to pain and she is more sensitive to pain.  I said it was only in one area, and that she has had a broken wrist and didn't complain at all.  He just thinks it is one of those things!  Advised to try hypnotherapy or acupuncture.  (I actually think acupuncture might be worth a shot)

Vomiting - as she is much improved, and he acknowledged that it is not right, but he feels she is coping well and she needs to be aware that psychological issues can affect the way you feel!

He was very 'nice' and appeared to be listening and sympathetic however basically she has to live with it!  

Jaime has just had enough and as long as she doesn't get worse wants to leave it.  I really hope she just keeps improving, but I would be really surprised if this is the end of it.  She does feel better than she has for a long time and I guess she is grateful for that.  Have promised her that I will leave it for now, but if she starts to deteriorate in anyway we will have to do something.

I am going to look into getting a private fecal calprotectin test.  There would be no harm in this!


----------



## dannysmom

oh well ... I am glad he seemed nice, but it does sound disappointing. I am so glad Jaime has improved somewhat and can take a break from doctors/testing for a while.
HUGS!!!!


----------



## Farmwife

Ya, sorry I wish I wasn't right.:confused2:

You both need to recoup. The battle will rage again, so it's best to rest while you can.

We're here for you guys!

HUGS


----------



## Niks

I think she's just had enough and we realised that she hasn't been admitted to hospital, or been taken to Emergency since 12 May!  That is a whole month.  I really think that this is the longest time since last October.  

Let's just hope she keeps improving!  

fosterschick - have just found online faecal calprotectin from oxford screening practice, has got to be worth doing this even if for peace of mind.  Thanks for this!


----------



## my little penguin

Glad she is improving but it makes me :ymad:

When they start to say "sensitive stomach " etc..... without real explanation.
Since when they have no idea it is the "safe" fall back.

DS was told this more than once-- turns out he just wasn't on the right med.
That being said
I think sometimes you do need to take a few steps back to see where you end up since she was on all of the wrong meds for so long.
her system will need a bit to settle 
then you will have a better idea where you stand and how to proceed forward.


----------



## DustyKat

I so hope all continues to settle for Jaime, bless her. :heart: 

Heaven forbid if not, as mlp has stated, the wind down will allow you to start from a clean state again. I know I am stating the obvious here to you here Niks but keep observing and documenting just in case it is needed in the future. :hug: 



> He admitted that it is often hard to diagnose IBDs but they don't like to label people without concrete evidence.


I do appreciate and respect the sentiments stated here and it goes without saying that i wish more than anything that Jaime is never labeled with IBD but it does remind me of something that I posted a couple of years ago: :lol: 

http://www.crohnsforum.com/showthread.php?t=18683

Dusty. xxx


----------



## Dexky

How the hell??  I can't find what I posted yesterday...he'll, I can't even remember what I posted yesterday!!

How often is Jaime vomiting now Niks?  If it's once a week, it's too much!


----------



## DustyKat

That's what they call Dementia Dex. :kiss:


----------



## Dexky

No argument from me!


----------



## vtfamily

It  just makes me angry when the tests don't reveal anything concrete and the docs (let's give them the benefit of the doubt) imply that the patient (or parents) are merely over-reacting or are overly sensitive and/or it's all in your head!

If Jamie were his daughter, I guarantee you that he would not be so casual about her symptoms.

Glad to hear that she has had a bit of a break...one month and counting.  Hope it continues.  You both deserve the breather!


----------



## 723crossroads

Dexky said:


> How the hell??  I can't find what I posted yesterday...he'll, I can't even remember what I posted yesterday!!
> 
> How often is Jaime vomiting now Niks?  If it's once a week, it's too much!


Duh, don't you do crossword puzzles Dex?? Haha!!!

Sorry Niks, this is personal, defending my honor against this scoundrel!:devil:


----------



## kimmidwife

Nike,
 I am so glad she is finally having a bit of a break but some of the things that doctor said remind me of things Caitlyn's first doctor who we fired said. " oh it is in their head, girls are more sensitive etc." if she starts to get poorly again you have to look for a new doctor as hard as that is. Your poor baby really need some answers. I hope the fecal cal. Can help.


----------



## Niks

Dexky said:


> How the hell??  I can't find what I posted yesterday...he'll, I can't even remember what I posted yesterday!!
> 
> How often is Jaime vomiting now Niks?  If it's once a week, it's too much!


Lol I know! Dusty"s memory is incredible!  .

She is still vomiting everyday usually not more than 4 times, sometimes once or twice! Seems pain related now, rather than food. X


----------



## DustyKat

So not normal ay Niks? :ghug: 

I think it is fair to say that we all know our kids better than anyone and I don't think I would be wrong in saying that we would be the first to admit if we felt one of our children had 'issues'. I know from reading here over the past few years that we are the first admit if we think our kids are over reacting to something, or they are sensitive to something, or they are just being little buggers. 

Go with your gut Niks, keep documenting and pushing for answers when you feel it needs to be done. I always look at this way...if I push for answers and they prove me wrong then I will happily take that with both hands and do the happy dance big time but if I am not proven wrong then I will not spend the rest of my life carrying the guilt of ignoring what I felt and so doing nothing about it. 

You have been doing a fabulous job Niks and whatever happens from here on in you have nothing to feel guilty about.  Kudos to you! Jaime is a very lucky lass to have you as her Mum. :heart: 

Dusty. xxx


----------



## Niks

Thanks Dusty 

I have never caused a fuss. When she was a baby she was referred to hospital for failure to thrive. She was such a big baby she just couldn't maintain that weight. From 9  - 18 months her weight remained the same. Back in October they left her notes on her bed. They said 'doctor and health visitor extremely worried about this babies weight gain. Mother unconcerned!!! Oooops!! Lol. I wasn't worried! She was fine. Her brothers were small. She was 9lb born and maintained 97th centile until she started moving.  She was never you going to stay there!!

I have never been a worrier about my kids, but you're right Dusty you just know when something is wrong!! 

Will keep records of what's going on xx


----------



## xX_LittleMissValentine_Xx

Hey Niks,
I just read about your recent appointment and I just thought I might tell you a little story about my sister. This is non- IBD related, but a similar situation.

When my sister was a young teen, she just started not feeling well, taking a lot of time off school. We found it hard to understand what was wrong with her but her main symptom was dizziness. She saw various specialists but she was always left with no diagnosis. As the years went on she just got worse, everything effected her. She just seemed to get tired like she was so weak and she couldn't get through a week at school. She couldn't even go on a short walk without it making her dizzy because of the way the road was or something. 

The point of my story is that she was given no diagnosis, which she had to learn to deal with. She got even worse when she started her A levels. Her legs started giving way and she couldn't walk. It was so strange. But over the next few years she somehow learned to deal with it. She learnt the balance between pushing herself and taking it easy and managed to build her strength up.

She is at university now and doing really well. She now runs that walk she couldn't used to do! Medically we recently found out she has an irregular heart beat so we don't know if that has anything to do with it.

Anyway, I know you are going through nothing like this, but as Jaime seems to know how to live with it so well, no diagnosis doesn't mean its the end and it will always be this bad.

I do hope you get some answers though and she can get a better quality of life! 

x x


----------



## fosterschick

No worries , good luck and god bless u both xx I think t appointment sounded like so many I have had a bit of a pass off, I feel like there is a tick box culture in nhs ! And if u don't fall into bowel damage or bowel cancer then its ibs and deal with it until it becomes bowel damage grrrr xx


----------



## Niks

fosterschick said:


> No worries , good luck and god bless u both xx I think t appointment sounded like so many I have had a bit of a pass off, I feel like there is a tick box culture in nhs ! And if u don't fall into bowel damage or bowel cancer then its ibs and deal with it until it becomes bowel damage grrrr xx


I think you're right!! 

When you did FC test did you do the positive /negative or did you pay more and get numbers??


----------



## littlemissh

You are much better off getting the numbers because positive and negative really doesn't tell you much, as there are so many things that cause a very slight rise- gastritis, oesophagitis (from repeated vomiting)...even some blood can cause it to be raised. Your GI may then turn round and say it could be that.
If you have numbers then it gives you a better idea of the likely cause of the rise.
Each lab has different ranges but usually <60 is normal in adults (babies and young children tend to have slightly higher values).
60-100 is borderline and they would suggest repeat in 6-8 weeks,
>100 abnormal and warrants further Ix,
>150 likely IBD.

NICE are going to be releasing their recommendations about calprotectin and the relevant numbers in october 13.

Hope this helps.

PS I had a private test done by Kings Path (Kings college) out of curiosity as our DGH doesn't do as yet- gstro want -hospital says no!. It was 706 on 2 weekly humira...so now on weekly humira. It can be very,very informative and useful.


----------



## Niks

Thanks Littlemissh. I did think it would be worth paying a bit extra for!! Will send off for the test. Can't hurt!! Xx


----------



## kimmidwife

Nike,
I am keeping my fingers crossed that the fecal cal gives you guys some answers!


----------



## CarolinAlaska

I am glad you posted an update so soon.  I can't believe they are willing to leave her where she is and tell you that she is good now when she is still vomitting 4 times a day!  How are her teeth taking this, by the way?  Vomiting is very bad for tooth enamel.  I am glad you are doing the Fecal Cal test.  I hope it won't be blown off too.  Have you considered having the Promethius labs done for genetic testing for IBD?


----------



## Niks

She will need to get to the dentist soon for sure!   So far they look okay, but I am no dental expert!

Will see what comes back with FC tests but yes, would be worth looking into genetic testing.  My grandfather died in his 60's of bowel cancer.  Her Aunt had bowel cancer recently, in her 30's.  Her Dad has diverticulitis and has had to have surgery to remove some of his bowel as so damaged.  I guess there is some genetic bowel problems both sides!


----------



## lsgs

Niks I've read about your latest appointment, don't accept it, seriously. 

Doctors can wear you down to the point where you begin to doubt yourself. 

I wasted 13 years of my life before I got anywhere and it took a lot of ups and downs and fighting against arrogant doctors. To this day my main GI is still trying to convince me of crazy ideas just to avoid admitting he's been wrong. 

As my rheumatologist says, just because we don't know what it is, doesn't mean it's not there. Think about it, what didn't we know 50 years ago? What will we know 50 years from now that was once 'IBS' or a 'sensitive stomach'?

Sensitive stomach is a way for the doctors to fob you off and hope you go away. There is no part of what your daughter is experiencing that is normal or indicative of a 'sensitive stomach'. I've also had that label by the way, along with many other impressive non-commital ones like 'non ulcer dyspepsia'. Spent most of my life thinking I had a psychological problem because a gastro said I did... When I went to psychologist for evaluation she said there's nothing wrong with you and phoned my doctors to give them what for. They do NOT know everything and their egos will not let them hold their hands up and say 'we don't know'. It would be less dangerous if they did. 

One thing I will say is that high FCP might not get you anywhere. I've had 4 high FCP readings and one normal and my main GI still tried to fob me off with 'false positives'. Other GI says probably IBD but can't say where. Another GI says ?crohns. Rheumatologist says ?IBD. Won't diagnose anything without further testing. They probably won't diagnose and treat off an FCP reading BUT it might get their attention, that's certainly what happened with me. 

Don't stop fighting. Jaime might be coping now but what about a year, two years, ten years down the line? She cannot live like this forever, whatever coping mechanisms she is using just now can't last that long. I coped well for 13 years before my first hospital admission and I'm still bearing the anxiety/stress/fear of that now even though I'm in very little pain. Sorry to be so pessimistic but I really do feel for her, and I don't want doctors who don't want to admit they don't know everything to get in the way of her improvement like happened with me. 

Has she ever had autoimmune disease testing by any chance or seen a rheumatologist?


----------



## Niks

Isgs, thanks for your message and thoughts.  

Did you have times when you thought things were a little better and could cope with things?  I know Jaime is not still back to how she should be, but she is coping so much better and just being well enough not to have to think about whether we should be heading to the hospital, or calling them, or going to GP is a massive step up for her!  She's been so unwell since August/September last year.  Symptoms started June last year.  (Previously had similar and always had pain from 15 years)

I agree with you, I do think there will be more to come and then we will start fighting again.  (I really hope not!  I hope that what ever it was/is just clears itself - doubtful I know but surely not impossible)

I also think that her FCP tests will come back normal!  Everything else with bloodwork etc does!  But it would put my mind at rest.

Jaime has never seen a  rheumatologist.  How do they test for autoimmune disease?  She has when really poorly had lots joint aches and pains and could barely get up or walk up the stairs!   This thankfully didn't last long!  She looked like an old lady!

Jaime has been admitted to hospital 9 times since last October.  Once overnight the rest 5 - 14 days.  At least 4 other times they wanted to admit her.  This is just crazy and I really hope we never get back to that!

I really hope you get answers soon too!  Sounds like you've had a real time of it   :ghug:


----------



## my little penguin

I agree rheumo might be the way to go - they handle alot of auto immune diseases
not just rheumatoid arthritis btw.
One they handle which would explain the things look bad in the colon then fine then bad etc... would be bechet's

http://behcets.org.uk

http://behcets.org.uk/information-for-patients/how-is-behcets-disease-diagnosed/

At this point I don't think it could hurt.
Rheumo was the one doc who helped us get all the other docs on the same page for Ds and he does not have rheumatoid arthritis


----------



## Kimberly27

I'll throw this idea into the ring.  What about an infectious disease specialist?  Maybe you need someone thinking WAY out of the box.

I know things aren't great, but I'm glad they're at least better.

Hugs.

Kimberly


----------



## lsgs

Niks said:


> Isgs, thanks for your message and thoughts.
> 
> Did you have times when you thought things were a little better and could cope with things?  I know Jaime is not still back to how she should be, but she is coping so much better and just being well enough not to have to think about whether we should be heading to the hospital, or calling them, or going to GP is a massive step up for her!  She's been so unwell since August/September last year.  Symptoms started June last year.  (Previously had similar and always had pain from 15 years)
> 
> I agree with you, I do think there will be more to come and then we will start fighting again.  (I really hope not!  I hope that what ever it was/is just clears itself - doubtful I know but surely not impossible)
> 
> I also think that her FCP tests will come back normal!  Everything else with bloodwork etc does!  But it would put my mind at rest.
> 
> Jaime has never seen a  rheumatologist.  How do they test for autoimmune disease?  She has when really poorly had lots joint aches and pains and could barely get up or walk up the stairs!   This thankfully didn't last long!  She looked like an old lady!
> 
> Jaime has been admitted to hospital 9 times since last October.  Once overnight the rest 5 - 14 days.  At least 4 other times they wanted to admit her.  This is just crazy and I really hope we never get back to that!
> 
> I really hope you get answers soon too!  Sounds like you've had a real time of it   :ghug:


I definitely had times where things were better. Unfortunately (as I'm sure you can relate to) it's all relative, and things aren't really 'better' so much as 'less bad'. It wasn't until I got a bit of proper treatment that I realised all those times I thought I felt better, I just had no concept of what feeling well was. And even now my concept of feeling 'well' is still very different to your average person. I recognise that in what's happening with Jaime in that you're saying she's feeling the best she ever has when she's still vomiting every day - that is NOT acceptable and at the very least she should have more symptom management even if they can't tackle the root cause. 

What I would also say is though, take a break if you need it. Take a break from doctors, hospitals, tests, results while she's doing okay. Then when/if you need to pursue things further you won't be so bummed out from constant hospital visits you'll have the energy for it. That's what we're doing at the moment. I need to have a small bowel MRI but I've put it on hold because I'm doing well. I'd got so fed up of hospitals I needed a break!!!

Rheumatologists deal with a whole host of illnesses that cause bizarre symptoms that don't show up in scans and quite often not in bloods until late stages of disease. So symptoms can be quite persistent and the bloods can be normal until it has progressed far. Think things like lupus, behcets, rheumatoid arthritis, all poorly understood diseases. I got diagnosed with sjogren's syndrome by my rheumatologist 5 or so years ago and it took them until 2 months ago (and one 5 min appt with a new GI!) to realise it was affecting my pancreas. Since I've received treatment for that I feel the best I ever have.

These sorts of diseases are diagnosed by blood test. Things like anti-nuclear antibody (ANA), rheumatoid factor, autoantibodies like anti-ro, anti-la, and many other things can be tested but they would NOT find them unless they were looking for them. It's a specific panel they need to order. Sometimes there is a giveaway in the ESR/CRP but not always. Also in my experience rheumatologists are very understanding, empathetic, warm doctors who really want to help you, even if they don't know exactly what's wrong with you. I would never have been on prednisolone if it wasn't for my rheum. They are totally different to GI's who seem to want to put obstacles in the way unless you fit into a neat little diagnostic box, which few people do. My rheumatologist has been an absolute lifesaver, he spent hours and I mean hours getting me on steroids and coaching me through the various dosing changes. He's always on the end of the phone (personally) if I need him and will see me the next day if I need help. Very valuable type of doctor to have an input from as they will search for answers even if it's not necessarily their remit/field. Also more likely to treat without a definitive diagnosis (I was put on pred without a diagnosis!)

Might be worth watching the latest episode of 24 hours in A&E on channel 4 to see the extent of pain autoimmune disease can cause - young guy with behcets was on it!!

Sorry for rambling, haha.


----------



## Twiggy930

lsgs said:


> Also in my experience rheumatologists are very understanding, empathetic, warm doctors who really want to help you, even if they don't know exactly what's wrong with you. I would never have been on prednisolone if it wasn't for my rheum. They are totally different to GI's who seem to want to put obstacles in the way unless you fit into a neat little diagnostic box, which few people do.


It's a rheumatologist love fest!!!  I agree with the above.


----------



## Niks

lsgs said:


> Might be worth watching the latest episode of 24 hours in A&E on channel 4 to see the extent of pain autoimmune disease can cause - young guy with behcets was on it!!


I think you are right about taking a break.  She has an appointment on 2nd July, which she is wanting to cancel because she feels that there is no point in going, if she is doing a little better and coping!

I did see 24 hours in A&E!  What a horrible disease .  It seems he got diagnosed at 18 while he was admitted in hospital. (I think the first time he was admitted)  His main problems are joint pain, especially knees and legs.  

Where do you live Isgs?  Was it easy to get a referral to a  rheumatologist?  Were you referred for joint pain?

xx


----------



## dannysmom

We've also been to rheumatologist and infectious disease ... but neither led to a diagnosis. No regrets though. The rheumi was willing to let Danny try Humira (for juvenile arthritis, even tho he suspects Danny has Crohns).
I understand Jaime's thinking of wanting a break. After 3 years of near constant dr appointments, Danny wanted a break too. Fortunately, he is still doing much better (still constant pain, daily D, and some fatigue) and is functioning pretty normally (made it thru school this whole year!)


----------



## lsgs

Niks said:


> I think you are right about taking a break.  She has an appointment on 2nd July, which she is wanting to cancel because she feels that there is no point in going, if she is doing a little better and coping!
> 
> I did see 24 hours in A&E!  What a horrible disease .  It seems he got diagnosed at 18 while he was admitted in hospital. (I think the first time he was admitted)  His main problems are joint pain, especially knees and legs.
> 
> Where do you live Isgs?  Was it easy to get a referral to a  rheumatologist?  Were you referred for joint pain?
> 
> xx


I live in Glasgow, Scotland. I got referred to a rheumatolgist via my GI at the time. I was being seen on private health insurance before I got kicked off and rheumatologist saw me once and took me on as an NHS patient at his hospital. 

I was referred on my GI's hunch that my ESR being raised was something autoimmune, he tested my rheumatoid factor and it was positive so then he referred me to the rheumatologist for diagnosis. At that point I had little to no symptoms of sjogren's (a few extra fillings due to dry mouth and couldn't wear contacts any more due to dry mouth but never thought anything of it at all) the joint pain etc came later. Essentially I was diagnosed 'by accident' while looking for the cause of my gut problems. 

Might be worth a shot


----------



## kimmidwife

Nike,
If you can get a good rheumo might be worth a shot. We had a bad experience with one here in florida who told us, oh there is no joint pain related to crohns disease. Needless to say we did not go back to him.


----------



## Niks

Ok - quick update.

Jaime's pain has got worse :ymad:  She also has pain in her back now.  Her bowels are moving which is good.  But LOTS of blood :confused2:  Water red and TP literally completely covered.  She has taken pictures to show GI at next appointment, but pretty sure nothing will come of it!  Her appetite is not great at the moment either, so she is supplementing with Fortisip.

Vomiting still but less frequently.  I just wished so much that someone would diagnose her properly!


----------



## littlemissh

If I were you I would email the picture to your GI. If there is a lot of blood then I am sure that they would want to know and see what you mean by lots of blood.

It may kick them into action, but only a small amount of your time wasted sending the email.

Have you enquired yet about the calprotectin test or are you taking a breather?


----------



## Niks

I am waiting until I get paid, then ordering the test (Friday).  I have asked Jaime to e-mail GI.   She won't!  She has the picture on her 'phone, so I can't do it.  Plus the GI at the last appointment asked me not to e-mail him and he would rather hear from Jaime herself!  Great huh.  

She is obviously worried about it otherwise she wouldn't have told me and taken the picture in the first place.


----------



## Kimberly27

I'm so sorry to hear the pain is worse and that Jamie is loosing so much blood.  Is she on some type of iron supplement?

Kimberly


----------



## Niks

No Kimberly. Her bloods are always really good though, so not too worried about that, but WHERE is it coming from!?!  

Her next appointment isn't too far away, so will see what he thinks, I am guessing it will be shrugged of as 'just another one of those things'!  But whatever he said about her being sensitive to pain and having a sensitive stomach, there is no denying this symptom!


----------



## littlemissh

Worth noting that if there is  a lot of blood in the stool then the calprotectin test is less accurate. So if you can get one with less blood contaminating it, it would be better.


----------



## lsgs

Niks said:


> I am waiting until I get paid, then ordering the test (Friday).  I have asked Jaime to e-mail GI.   She won't!  She has the picture on her 'phone, so I can't do it.  Plus the GI at the last appointment asked me not to e-mail him and he would rather hear from Jaime herself!  Great huh.
> 
> She is obviously worried about it otherwise she wouldn't have told me and taken the picture in the first place.


Great cop out on your GI's part. Probably knows a teenage girl isn't going to be e-mailing her doctor anyway. Disgraceful attitude. 

I would forgo his 'rule' about emailing and do it anyway. Even if you don't get the picture, I'm sure a graphic and florid description might get their attention? If it doesn't then shame on them. 

What is it with consultant GI's in the NHS?! Seriously?!


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## 723crossroads

Sorry to hear this Niks! It just doesn't end for you guys! Saying a prayer for you both!:ghug:


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## kimmidwife

Niks,
Tell her to email them. A lot of blood needs to be checked out it and shouldn't wait. This may be the proof the doctor needs to say oh this is not a motility issue something else is going on.


----------



## Niks

Am working on it! She doesn't want me to mail, so maybe she will!!! When she gets home will have another go! Xx


----------



## Dexky

I hope you convinced her to send the pic Niks!  I don't know what they think is causing her to vomit repeatedly but they can't deny obvious bleeding needs some more investigation!


----------



## fosterschick

Its also worth noting that ur daughter is a still classes as a vunerable adult  and under british laws , wherever possible a responsible adult should accompany under 21's and represent them , so her GI saying she shud speak for herself only is well out of place xx


----------



## Niks

fosterschick said:


> Its also worth noting that ur daughter is a still classes as a vunerable adult  and under british laws , wherever possible a responsible adult should accompany under 21's and represent them , so her GI saying she shud speak for herself only is well out of place xx


I didn't know this!  Thank you!

She won't let me mail. As her appointment is next week I shall be using this as reasons why I should mail too. Her reason is 'well they don't care, so what's the point. They won't do anything. They'll just say it's another thing I have to live with'.

I shall be telling him this is what she thinks next week! :ymad:


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## vtfamily

My heart goes out to you. 

It's great that fosterschick had the "legal ammunition" for you!!

Just a thought, if Jamie sent (or would send) the photo to your phone, then you could send it to the doctor.

Another thought, would it be possible for you to get a copy of her medical records and work via mail/e-mail with the Mayo-Clinic or something?  I would imagine that one of their doctors would be able to "arm" you with some better questions and suggestions for your docs.

Here is the link to their international services: http://www.mayoclinic.org/international/

Here is the contact us link (scroll down for international contact info): http://www.mayoclinic.org/contact/

Good luck.
Cheryl


----------



## lsgs

Niks said:


> I didn't know this!  Thank you!
> 
> She won't let me mail. As her appointment is next week I shall be using this as reasons why I should mail too. Her reason is 'well they don't care, so what's the point. They won't do anything. They'll just say it's another thing I have to live with'.
> 
> I shall be telling him this is what she thinks next week! :ymad:


I've been there. How sad when a young girl is thinking like this. That nobody cares or wants to help. Unacceptable


----------



## Niks

Thanks guys!  Cheryl thanks for link! Will be e-mailing as soon as I can  xx


----------



## ChampsMom

Niks.... What I'm going to say I think is really gross - but it came to mind and I think to myself it is an "IN YOUR FACE" approach....  Please forgive!

I think J should have two buckets and for ONE week - anything coming "up" should go in one bucket and anything coming "down" should go in the other bucket and then show up at the GIs office and say THIS!  THIS is what she is going through!  THIS is what she's losing EVERY DAY!  WHAT the heck is causing it?!  We aren't leaving until you figure it out.

I ache for you gals... Praying for you...

Sorry...

(((hugs)))


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## Niks

Shell - I love your thinking!! She would never agree to it, but I might mention that this was suggested at her next appointment. Just to see his face!!! :lol: xx


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## Farmwife

Oh Niks I would pay money if you took Shell's idea.:lol2:

Also you would have to video tape the reaction of the doc.:ylol:


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## Catherine

Niks

Maybe send a email of what you want to say to the doctor by email to Jamie and ask her for any corrections and to attach the photo and on forward to doctor.


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## CarolinAlaska

And the nightmare life of Jamie daughter of Niks continues...  I'm so sorry it goes on and on.  I can't believe that the GI said not to write him.  I was figuring now she was under his scopes and that they would be more attentive to you both.  What a joke.

I like the idea of Mayo International.  Let us know how that goes.  Wait for a more normal stool if a bloody one interferes with the fecal cal test - you certainly don't want to pay all that money for an invalid test...


----------



## DustyKat

Ugh Niks! I don't know what to say except to say that my heart goes out to hun. I know and understand the fear and frustration you are feeling and hope more than anything that your dear girl soon has solid answers and lasting relief. :heart: 

:hang: 

Dusty. xxx


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## Crohn's Mom

Thinking of you both Niks and hoping with everything that things improve soon!
Big hugs!


----------



## Bubbly

Havent been on for a while, and thought i would see how your daughter was doing, and so sad for you both that things are still not going well for her.

The FCP test my son has done at Addenbrookes, Cambridge, and have to admit in January when he had one done, after they kept saying all his bloods are ok, they did it and it was off the scale!! That bad!! They always do number readings and results take approx 10 days. Just add another done after 3rd infliximab and its 200, so alot better but still high, think its a case of time to get it reduced. Will just say that he bloods work always shows good results, but the stool sample, different story altogether!! After his initial high one in january, they redid all his scopes and mri/barium, the inflammation was horrendous, not sure why didnt show up in blood work!

Anyway, hope she can get the test done quickly and you both hopefully get some answers very soon.


----------



## Stephyjane

Hi Niks I just wanted to say hi and I hope things get better soon for your daughter. My daughter has care under Oxford aswell as our local hospital. 
I'm sorry I have no advice for what your daughter ( and family ) are going through but hope you get answers soon. Xx


----------



## vtfamily

Bubbly said:


> The FCP test my son has done at Addenbrookes, Cambridge, and have to admit in January when he had one done, after they kept saying all his bloods are ok, they did it and it was off the scale!! That bad!! They always do number readings and results take approx 10 days. Just add another done after 3rd infliximab and its 200, so alot better but still high, think its a case of time to get it reduced. Will just say that he bloods work always shows good results, but the stool sample, different story altogether!! After his initial high one in january, they redid all his scopes and mri/barium, the inflammation was horrendous, not sure why didnt show up in blood work!



I agree with Bubbly.  When it comes to IBD, the bloods should not be the "standard" for determining treatment.  Gus' blood work almost always look "fine."  Even Gus' doctor says he doesn't fully trust the blood markers for inflammation, etc...  We still do them, but they don't determine his treatment course.

The FCPs have been better, but also not 100% revealing.  I think it comes down to obtaining biologic samples when the flare is at its peak.  I don't know about the rest of you, but that's not as simple as it sounds around here.

 Cheryl


----------



## 723crossroads

Hoping for a miracle for Jaime and you Niks. It has been a long road for you both. Good thing she has you!!!:heart::award2:


----------



## Niks

Thanks everyone.  Hopefully we'll work out what is going on with her sooner rather than later!!  xx


----------



## kimmidwife

Hi Niks,
Wanted to see how Jaime is doing. Did she email the doctor? Any luck with getting the fecal cal. test?


----------



## Niks

Hi Kim, thanks for checking on us! she wouldn't!  We are going next week and will show him pictures etc.   I will tell him why she wouldn't  e-mail!  

Ordering test today!  Got paid, has been a long month!  LOL xxx


----------



## 723crossroads

Just stopping in to say hello and hoping you get some answers at the upcoming appt. I had a rough day yesterday but better today.:thumleft:


----------



## Niks

Thank you Teresa.  Hope you are feeling better now xxx


----------



## Sascot

Just wanted to wish you luck for the appointment on 1 July. I will be away so will check in afterwards to see how things went!


----------



## Niks

Thank you Sascot, enjoy your break xx


----------



## DustyKat

Oh Niks...:ghug::ghug::ghug:

I hope so much that you both start getting answers. You must be worn out with worry and your girl just plum worn out! :heart: 

Sending loads and loads and loads of luck and well wishes for the upcoming appointment and test! 

Dusty. xxx


----------



## CarolinAlaska

I'm thinking it may be about time for Niks and her daughter to emigrate somewhere else to get different docs and someone who isn't afraid of parents or in doing a full workup!!!  Grrr!


----------



## Niks

Thanks ladies.  Not holding out any real hope for appointment on Tuesday, but he has to agree that her symptoms are no longer dysmotility!!!  We'll see if he has a plan.  xx


----------



## vtfamily

At minimum, you can go in armed with questions and demand he answer them...like:
1) If not dysmotitilty, then what else has these symptoms?
2) Is he concerned about Jamie's continued symptoms?
3) Are there any other doctors/clinics who see and treat a larger number of these difficult cases?  Can he refer you there of can he consult with them?

Gus said he would ask the doctor
4) What other tests can we do?  If the MRE and scopes haven't given us enough information, what about a pill-camera study?

(Niks, it may sound crazy, but Gus has done two pill-camera studies.  Both cameras got stuck in his strictures.  One had to be surgically removed.  HOWEVER, if it weren't for the cameras getting stuck, we would have never found-out how severe his strictures were and/or where they were located.  And trust me, there were dozens of scopes, biopsies, blood tests, stool tests and MRI/MREs...the magic "bullet" (no pun intended) was the pill-camera).

Anyone else able to add to Niks question list?

Best of luck to you for Tuesday.
Cheryl


----------



## Niks

Thanks Cheryl!

I have a list of questions.  Although I find that Doctors have an amazing ability to answer questions without actually answering questions!  Her D is worse though, I do think that they need to do some more investigations!!

xx


----------



## Mehita

I say handcuff yourself and Jaime to the exam table and say you're not leaving until they provide a diagnosis and treatment plan.


----------



## vtfamily

Mehita said:


> I say handcuff yourself and Jaime to the exam table and say you're not leaving until they provide a diagnosis and treatment plan.


I second that!


----------



## QueenGothel

Niks, just lurking and wanted to let you know ai am supporting you.  Sorry you are still doing this.  What I don't get if he thinks it is a motility issue why does he think she should just live with this.  I mean COME ON! :stinks:


----------



## Niks

Mary, he has changed his mind about dysmotility! The last time she was called in her bowels had been moving. So we have done a complete circle and back where she started this time last year!! 

The problem is J actually is feeling better. Nowhere near as much vomiting, bowels now moving. Still has pain and bleeding, but compared to how she has been, she is better. 

I just hope she doesn't play it down tomorrow. She has already told me not to get cross!! 

When he told me that she was sensitive to pain in that area, I asked him if that accounted for her passing out.  She turned round and said it was only a couple of times. I don't know whether she just blanks these things out, but ambulances have been called at least 6 times, that I can remember, when this has happened and there have been numerous other times!! :angry-banghead:


----------



## QueenGothel

I did pan through this thread.  I cannot believe I missed that post of yours just down the page telling us she didn't have dismotility:ybatty:. I am really glad things are moving again.  As that can be so scary. Sorry she is playing down her symptoms.  She seems fed up with the doc and like she has lost her faith in him.  Is there anyone else she can see to maybe help her feel like someone can help, again?  I know there is mention of Mayo international.  What are your options at this point?  Please tell me you do have some... Sigh.  Tough times momma!  You hang in there!


----------



## vtfamily

Niks,

Gus always down plays the pain or events that occur between doctor visits too.  That is one reason they need us to attend their appointments.

Here's a little trick I learned to sway to doctor toward my recollection vs Gus'...keep notes on a pocket calendar or notebook (if you haven't been doing it, just get a notebook and write it all down as if you had kept track all along).  Ultimately, what matters is that the ambulance was called six times, not the exact dates of the calls.

When Gus' Crohn's is very active, I'll even send weekly updates by e-mail.  The e-mails are included in his medical record...hard to the doctor to ignore info when he is kept in the loop on a weekly basis.

Best of luck to you tomorrow.
Cheryl


----------



## Catherine

Before Sarah was dx when the dr were saying it was gastro, Sarah would say why go to the dr. She would always play down her symptoms.  Its like when they feeling better they don't want to reminded how bad it was.

Remind Jamie the only way she will be answers is by explaining how bad her symptoms still are.  

Something like my pain is less, but I am still in pain everyday.
I am bleeding?  How do we make stop?
I shouldn't have to live this?
If you can't help? Who can?

Sarah also thinks I should stop going on this site because I find out about new blood tests and that the dr orders for my piece of mind.


----------



## Dexky

I hope there's something you guys can glean from today's appt. Niks...anything!!


----------



## Niks

All I can say is AAARRRRGGGGHHHHHH!!!!

Traffic was horrific this morning.  We got there 15 mins late, it took us over 2 hours to do a 45 min journey.  When we got there was told the appointment had been rescheduled!  WHAT!

She said that Jaime could stay and be 'slotted' in somewhere, but she is in a lot of pain today and also bleeding, needing to wear a pad to stop it going through to her clothes.  She did not want to wait hours and see someone who she had never seen before and start her story all over again.  So we came home on the understanding that we e-mail and send the photos straight away!

We have.  Now we'll see what happens.  SO CROSS!!!  :ymad:  I used an annual leave day for this appointment!!!


----------



## my little penguin

Hugs so sorry


----------



## 723crossroads

So sorry Niks! That happened to my sister too who had major foot surgery and has to be driven to the city. She gets there and they change her appt. because of some emergency. She had a bone taken out of her foot. It's a long story. But I understand your pain and emotional anguish for Jaime!:hug:It is ridiculous this happens. They should have to call you! Pls keep us posted on what they say when they see the pictures. Hugs sweetie!:ghug:


----------



## CarolinAlaska

That almost happened to Jaedyn and her daddy last visit too.  They were late due to road construction and the nurse was going to reschedule them.  I told her that they had already driven 3 hours and that we live 3 hours away in good road conditions, and could they swap people around to make it work.  She finally talked to the doctor and got them in late...  I know it is inconvenient for the doctors, but LIFE HAPPENS!


----------



## Niks

No Carol!  Her appointment had been rescheduled BEFORE we even got there!  We don't know when it is, but we should have received a letter to tell us it had been changed!!  We didn't .

The Doctor she has been seeing wasn't in today, so she didn't want to have to go through the whole lot again with someone else, who we know wouldn't do anything until he is back.

I guess that's why she hasn't received a reply from e-mail too.

xx


----------



## vtfamily

I'll second that Arrrrrrgh!

Traffic and delays happen.  We also have a two hour drive to see Gus' doc.  We usually allow plenty of travel time, especially during peak traffic times.  Even so, we've been more than 15 minutes late plenty of times over the years.  Our solution...keep the docs direct access phone handy and call if it looks like we will be late.

I completely understand Jamie's feelings...however, she should have stayed.  With those symptoms, the nurse should have found a way to have Jamie's doctor see HER as soon as possible.  Malpractice leaps to mind!!!

Any luck with contacting the Mayo Clinic?

Cheryl


----------



## Dexky

Groan!!!!  Niks!!!  I can't imagine your frustration!  If it's not one thing it's always another!!


----------



## kimmidwife

Oh Niks I am so sorry to hear what happened! I am sorry you and Jamie continue to have to battle the medical system. I only hope the Mayo clinic is willing to help.


----------



## vtfamily

Niks,

Have you considered reaching out to one of your news outlets and allowing them to follow Jamie's case for a story?

I'm just guessing, but I imagine that there are media sources that highlight medical stories as a check and balance for the United Health Care System...exposing areas that need better access, treatment procedures, guidelines...etc...

Jamie has been battling this for so long without a good treatment plan, a reporter following her case for a few more months couldn't hurt.

Hugs to you!
Cheryl


----------



## Niks

Thanks everyone!

I haven't heard back from Mayo Clinic, will leave it a few more days and then try again.

The appointment wasn't there, they had changed it already, but not let us know, so being a little late made no difference.  From what we could gather her Doctor was not even in yesterday, maybe on leave, not sure but going through everything with yet another Doctor was not going to happen in Jaime's mind.

Going to the media!  OMG you should have seen Jaime's face!  LOL, there is no way in this World she would do that.  She hates any negative attention and plays down to everyone what is actually happening to her.  I'm afraid she gets that from me.  :eek2:


----------



## Bubbly

Just wanted to send you both a hug.

You have both having a horrible time, which is an understatement i think, what happened yesterday is truly shocking, shouldnt happen at all. I would be on the phone to the clinic demanding an appointment asap, its not fair on you and your daughter to be left hanging, waiting for them.

Really hope you hear back from them soon, can understand her not wanting to go the media route, my son would be the same, hates being seen as different!

Good luck x


----------



## Niks

J has just received this!

Dear Jaime

I passed your letter to Dr Bailey and he has recommended that you do not have a faecal calprotectin, especially if you have to pay for it.  He has however booked you an appointment for 23rd July 2013 at 4.15 and you can discuss matters with him then.

Kind regards

Now WHY would he not want this test done??  Any ideas? I find it very odd.  Maybe he will get test done himself but why doesn't she just say this?  No mention, or apology for the mess up with appointment!  


I actually want to sent the link to this thread, so that he can read for himself what everyone thinks!  I don't expect he'd care though! 

:mad2:


----------



## lsgs

Niks said:


> J has just received this!
> 
> Dear Jaime
> 
> I passed your letter to Dr Bailey and he has recommended that you do not have a faecal calprotectin, especially if you have to pay for it.  He has however booked you an appointment for 23rd July 2013 at 4.15 and you can discuss matters with him then.
> 
> Kind regards
> 
> Now WHY would he not want this test done??  Any ideas? I find it very odd.  Maybe he will get test done himself but why doesn't she just say this?  No mention, or apology for the mess up with appointment!
> 
> 
> I actually want to sent the link to this thread, so that he can read for himself what everyone thinks!  I don't expect he'd care though!
> 
> :mad2:


That is so bizarre. Perhaps he is scared it will come back with something and you will be asking the question why he didn't order the test himself?

Kind of like my GI who blamed 3 high FCP's on being false positives - he was having to eat his words and didn't like it. 

It's not like it's a test with side effects, other than it being a bit icky. Haha.


----------



## Kimberly27

Is there a way you can talk to the head of the department?  Can't you insist on the test and have your health care pay for it?  I'd play the, "Remember you gave my daughter the wrong meds" card and see if that helps.

Kimberly


----------



## Clash

I would absolutely disregard that email and have the Fecal Calprotectin done. There is no down side, no invasiveness, no side effects. I would ask for the reason he suggests not having it done, in writing, since you do have scientific studies backing up the use of it, not as a diagnostic tool but to indicate what further testing should be done.


----------



## Farmwife

Agree with Clash.


----------



## upsetmom

^^^^^  Agree


----------



## CarolinAlaska

Dear Dr Bailey,

Really, the best you can do after you cancel Jamie's appt is July 23rd?  Do you realize what you are putting this young lady through?  It seems that you either, A. Are not aware of the severity of her symptoms, or B. You don't really care.  Could you please refer her to another doctor who cares?

Sincerely,
Carol in Alaska and a large international group of parents of kids with IBD


----------



## Farmwife

:dance:Love it! Press send now Niks!


----------



## Niks

:rof::rof::rof:

I know this is serious!  But did make me chuckle Carol!

Perhaps I should forward the link after all!!!!


----------



## Mylittlesunshine

Hi niks
OMG I can't belive how these doctors 
Can mess you around
If I was you I'd do the test like clash said
And yes send him the link of Jamie's 
Story on here migh help give the doctor some
Knowledge and remind what Jamie has actually
Been though and is going though. 
Arrrrrghhh makes me mad.


----------



## Niks

I have e-mailed one of the Secretaries again, with her symptoms today (particularly bad  )

I have also quoted you Clash on the FC test, and asked for an explanation.

Carol - really wanted to just mail him your letter, but just not that brave!! 

Told them that although Dr B does not want  me to mail him, as Jaime isn't then I will advocate for her..  Let's see what comes back.  I am guessing they will reply to Jaime and she will be mad at me for mailing them, but what do you do!?


----------



## Catherine

I would do the test, but only give him a copy of the results if the results are high.

I have had the test done twice, I have a dx of ibs both times the result has been 19.  Although the second test didnot show inflammation it listed a whole things that should be rules out.


----------



## Clash

I'm sorry here symptoms are worse today. I feel so frustrated for you and J and all you have had to endure!! I hope you get some much needed answers soon, sending hugs your way!


----------



## CarolinAlaska

You all realize that this thread is almost 1000 posts...  maybe not quite to the point, but it definitely tells the story!  I doubt any doctor would read it.


----------



## kimmidwife

Niks,
So sorry symptoms are worse today! I agre with the others do the FC test. I also agree that he is being a pompous you know what and does not want you proving him wrong by having this test done on the outside!


----------



## 723crossroads

:ghug:Niks, I would go ahead with it too. I mean you can make payments after all. I don't understand though why the Dr. didn't order it! What harm could it do? Is he afraid of being wrong? That's what I think. Next then hopefully pillcam!!!


----------



## Catherine

Niks, is worth copying Jamie in on your emails.


----------



## Niks

Catherine said:


> Niks, is worth copying Jamie in on your emails.


I have been. She wasn't mad at me!! She just said 'ok!'

I guess she feels pretty rough :/


----------



## vtfamily

Told them that although Dr B does not want  me to mail him, as Jaime isn't then I will advocate for her..  Let's see what comes back.  I am guessing they will reply to Jaime and she will be mad at me for mailing them, but what do you do!?


You continue to do what you are doing until Jamie and/or Dr. Bailey "get it."


----------



## Stephyjane

I agree with everyone else. Definitely get the test done, even is you are paying atleast you'll know. Absolutely disgusting behaviour regarding the appt, they must have your daughters phone number to have called and told her before travelling all that way. Your poor daughter must have no faith what so ever in our health services, you could write a book. So sorry you haven't gotten any answers yet. :-(((


----------



## DustyKat

Bloody hell Niks. :ghug: 

Sorry I am late to this hun.  

The appointment: What a crock of shit! They inform you by letter that your appointment is being rescheduled?! What fecking century are they in! Not to mention what if the new date doesn't suit? That is what a phone is for and a discussion as to what date and time is best. 
Grrrrrrrrrrrrr. 

The FC: I agree with all, do it independently. Having similarish health systems I don't see that your prices would be grossly different to ours. I don't recall what they are here but Catherine will know. 

Good luck! 

Thinking of you! :heart:
Dusty. xxx


----------



## Catherine

FC costs vary between labs, my cheapest lab is $40,  i have also had quotes of $80.  Other members here from Australia have paid up to $120.


----------



## fosterschick

Omg niks wat a lot u have had to deal with , and now scare tactics from doctors , have t test done for ur own peace of mind , they have done same to me my FC tests were nagative with NHS yet 3 postives ( including one done at t same time ) privatly , jusy how poorley do we have to b to get diagnosed ! Xx I also got told not to complain about my consultant as it would have an effect on my healthcare ! Awful , wishing u every luck with tests and big hugs to u both x


----------



## 723crossroads

Same here Niks!!!:hug:


----------



## Niks

Test ordered!!! If comes back negative all I have lost is £72!! 

We'll see huh! Xx


----------



## 723crossroads

Is that $72.00 American?


----------



## Niks

British Pounds!! X


----------



## lsgs

DustyKat said:


> Bloody hell Niks. :ghug:
> 
> Sorry I am late to this hun.
> 
> The appointment: What a crock of shit! They inform you by letter that your appointment is being rescheduled?! What fecking century are they in! Not to mention what if the new date doesn't suit? That is what a phone is for and a discussion as to what date and time is best.
> Grrrrrrrrrrrrr.
> 
> The FC: I agree with all, do it independently. Having similarish health systems I don't see that your prices would be grossly different to ours. I don't recall what they are here but Catherine will know.
> 
> Good luck!
> 
> Thinking of you! :heart:
> Dusty. xxx


The NHS don't care if you work or have other commitments. Sadly the attitude is that they are doing you a favour by seeing you! My rheumatology appointments are a 9 month wait. If you have to cancel, you wait again. It's shocking.


----------



## Niks

Yep Isgs.. Exactly that!x


----------



## vtfamily

lsgs said:


> The NHS don't care if you work or have other commitments. Sadly the attitude is that they are doing you a favour by seeing you! My rheumatology appointments are a 9 month wait. If you have to cancel, you wait again. It's shocking.


:stinks:THAT SUCKS STINKY ROTTEN EGGS....as Gus would say!

No matter if a physician is in a private practice, PPO, HMO or NHS, their OATH (paraphrased) is to  "...use those dietary regimens which *will benefit my patients according to my greatest ability and judgement, and I will do no harm or injustice to them.  I will not give a lethal drug* to anyone.  In purity and according to divine law will I carry out my life and my art.  Into whatever homes I go, I will enter them *for the benefit of the sick*..."

Your daughter is sick, really sick.  Any doctor she comes into contact with should be moving heaven and earth to find the cause and develop a plan for a solution.  If Jamie were his daughter, he would NEVER allow her to SUFFER so!  

Even within the NHS, that doctor (someone who is willing to meet the challenge head-on and not give-up on it) has to be in there somewhere.  The trick is to find that one doctor who cares more about the patient than the "rules of the system."  Can you do an internet search for the top IBD docs in the nation?

:hug: Cheryl


----------



## fosterschick

Good luck xx


----------



## Tesscorm

Perhaps this may help...

This website lists doctors and offers a rating.  It isn't a complete list of doctors and I can't vouch for the rating as both the doctors listed and their ratings are based on whoever has posted the rating but it is a starting point.  Out of curiosity, when I looked up my own GP and Stephen's GI, the ratings/descriptions seemed fairly accurate.

The link below is directly to GIs in the UK, however, if you go to the main page (www.ratemds.com), you can set your own parameters.

http://www.ratemds.com/filecache/se...er=&dcity=&sid=&dspecialty=Gastroenterologist


----------



## DustyKat

lsgs said:


> The NHS don't care if you work or have other commitments. Sadly the attitude is that they are doing you a favour by seeing you! My rheumatology appointments are a 9 month wait. If you have to cancel, you wait again. It's shocking.


Ugh! Sounds like a few pedestals need knocking down! :voodoo: 

Okay, so the FC is at the top end of what Catherine has quoted, figures! :yrolleyes: But you can't put a price on peace of mind.  

Good luck to you both Niks! :heart: 

Dusty. xxx


----------



## Niks

thanks everyone, I have some research to do!! The reason why I went to Oxford in the first place was because Swindon was just so bad and didn't believe her!

At least no one has been that bad. I do take faith in the fact that there are several people on here who have had to change GI's numerous times before finding a good one!! X


----------



## Niks

£72 in the big scheme of things is nothing! It was the only place in UK that did single tests. I guess mist companies sell to Doctors or clinics over here.

It will probably get more competitive if more companies do the test!! X


----------



## DustyKat

I agree Niks. It is a drop in the ocean compared to the information it will provide you with. 

Dusty. xxx


----------



## ChampsMom

What Clash said...

And I agree with you Niks about printing this thread and sending a copy to whoever is in charge (cc'd to the GI)...  

 UGH!!


----------



## QueenGothel

Niks, Rowan changed GIs within the hospital, then we switched hospitals all together and had two more GI changes before we found one we liked. It is a process for many.  I wish you luck in the search.

This was in 5 months time. So a bit crazy.


----------



## Niks

Okay so Calprotectin test sent off!  I really don't expect anything to show, everything else comes back normal.

Jaime got a letter from Oxford today dated 13 June!  Really!  I know that mail takes a while but nearly a month??

His new diagnosis - 1.  Coeliac disease 
                           2.  Constipation predominant irritable bowel syndrome with visceral hypersensitivity..  Hmmm.  Since WHEN did you bleed with IBS and loose so much weight?  

Anyone else think he's running out of ideas?  

He never did reply to my last e-mail.  Am really looking forward to what he has to say on 23rd!


----------



## Clash

I'm glad you got the test sent off.

In regards to his latest dx, I would title a page with each of the diagnoses at the top and list in detail each of her symptoms, under both dx titles, make copies. Then at the appointment, hand him and J a copy and ask that he go over his latest dx in relation to each of her symptoms and explain to you why each one fits with what he has diagnosed. If some don't fit ask what he plans to do to investigate the source of that symptom.


----------



## vtfamily

That is an excellent suggestion, Clash!


----------



## Maree.

Have nothing to add beyond to say, still thinking about you and your girl. 
Your NHS stories really are staggeringly bad.  

Hope the Calproc gives you the evidence you need to push for answers.
As Catherine commented, if it's negative I wouldn't share the result as it might just give them another excuse to not look properly.


----------



## 723crossroads

He is off his rocker Niks!!! new Dr!!!


----------



## poppets mum

:voodoo:Oh no you got the same crappy diagnosis we did. It drives me nuts.:angry-banghead::


----------



## kimmidwife

Niks,
I can't believe them at this point! What the heck is wrong with these doctors. I think Clashes idea was great. Also along with the diagnosis and her symptoms put a list of common symptoms of that disease versus her symptoms to show him this just doesn't add up.


----------



## Tesscorm

Glad you sent off the test!!!  And, as was said, no need to share with him if it doesn't add value to your argument!

Also agree with Clash's idea!  He'll be forced to address each issue/symptom.

Like everyone else, I am just amazed at the runaround you and Jaime have had to endure!  I hope that, somehow, the next apptmt brings about some change!!!  :ghug:


----------



## ChampsMom

I think Clash should go with you - that was awesome!

And I think you should picket the front doors of the building.  Might not get you any answers, but could get you a lot of attention.  Get the local CCFA involved to stand with you.  

You'll need a good chant...  

My top 3:

#3.  Believe in, Dream of, Hope for a cure!
#2.  I will stay strong, I will fight, I will win!

But my favorite....

#1.  I don't look sick, but you don't look stupid.  Looks can be deceiving.

I think you should make a T-shirt for Jaime and have her wear it to her next appointment.  You could wear one that says, "Yeah, what she said..."  

HUGS!!!


----------



## Niks

So funny Shell!!:rof::rof::rof:


----------



## Dexky

I'd say something like... look doc, I don't care what you call it as long as my daughter stops throwing up 4,5,6 times/day, she's able to eat and maintain weight and her bowels work properly!  So far, for nearing a year now, that's not happening!  Do your damn job!!!!


----------



## 723crossroads

Just wanted to say hello Niks and thinking of you. How was your day out with the girls? Hope you had fun! We all need a break sometimes from life....:hug:


----------



## kimmidwife

ChampsMom said:


> I think Clash should go with you - that was awesome!
> 
> And I think you should picket the front doors of the building.  Might not get you any answers, but could get you a lot of attention.  Get the local CCFA involved to stand with you.
> 
> You'll need a good chant...
> 
> My top 3:
> 
> #3.  Believe in, Dream of, Hope for a cure!
> #2.  I will stay strong, I will fight, I will win!
> 
> But my favorite....
> 
> #1.  I don't look sick, but you don't look stupid.  Looks can be deceiving.
> 
> I need #1 on a T shirt that is awesome! You know how many times a day I hear but you don't look sick or your to young to need a cane to walk!


----------



## vtfamily

Niks,
I reached out to someone who (successfully) navigated their Crohn's in the NHS for 20+ years for some advice on how to be taken seriously in your situation.  Here's the advice:
In my experience, the only way forwards is to get the family doctor onside with the problem and get his/her help in seeking a second opionion. The medical profession is obsessed by tests over reported symptoms so finding a better listener of a GI would be top of my list.

Sounds pretty simple/basic, but I think it goes go to the heart of the matter for any family in our position.  We need physicians who are good listeners and thoughtfully consider our symptoms and concerns.

You are correct that most of us have been through multiple doctors and facilities before finding a situation that works well.  So, change as many times as you need to, until you find the right fit for Jamie (and you).

If you don't get anywhere with Dr. B next time you see him, and/or he makes no attempt at a genuine treatment plan, then I suggest you ask for another referral.  If he hasn't been able to work out a good treatment plan for Jamie by now, perhaps even he is ready to admit she would be better served by another doctor???

I'll keep praying for you both!!
Cheryl


----------



## Jane and Nick

Dear Nicks, your patience must of been stretched beyond belief. You have been a supportive and pro active mum. I do hope you find the right doctor it's ridiculous that you have not yet got some body to help you.


----------



## Niks

Cheryl, thankyou for seeking advice on our behalf!! I know you, and everyone else is right.  It is just so frustrating when we are at one of the best hospitals but she is still being fobbed off .

Loving some of your banner and t-shirt suggestions .

As always, I really appreciate all the support and advice I get on here.  I really would have buckled under the strain without you all.  You are all amazingly caring, knowledgeable, supportive and funny!! Especially when things aren't funny, but it does really help to laugh .

Thanks you guys :hug:


----------



## Kimberly27

Niks,

Hugs to you both.

Is there a local CCFA member who would attend the meeting with you?  Would that help?

Kimberly


----------



## vtfamily

Niks said:


> It is just so frustrating when we are at one of the best hospitals but she is still being fobbed off :


Even at the best hospitals, you still need a doctor who actually listens to you and takes what you say seriously.  If the doctor isn't the key, perhaps you need a nurse or assistant who will really listen to you and knows how to "work the system" on your behalf.

You are not being difficult.  You've been strong through a very difficult time and been a good example for your daughter!

Any luck with the Mayo Clinic?

:hug:Cheryl


----------



## DustyKat

Hey Niks...:hug::hug::hug: 

Do you think it may be time to have an advocate? 

It doesn't have to be a professional, it could be a very trusted family member or friend but the key is for them to know Jaime but not have the level of emotional attachment that both you and Jaime have and that they are confident in meeting type situations. 

It is so difficult not get sidetracked during hospital admissions, you are both tired, scared, frustrated and just plain fed up. Then there are the consultations, again, it is not difficult to get off track and at times even zone out. I have BTDT many a time! 

By taking someone else with else with you you not only have an extra set of eyes and ears but they can keep things on track and ensure that vital questions are asked and answered if you give them a list of what you want to know. 

They are also very helpful when it comes to the post consult 'post mortem' whether that be in a hospital, clinic or private rooms. It gives you and Jaime that third person to toss information and views off. They may well hear things you don't and they can provide honest and open feedback about the consult as well as if what you may be feeling about a given health professional is valid. 

Just something to think about hun.  

Now if I lived closer I would happily go with you but since I don't how about Skype? :lol: 

Thinking of you! :heart: 

Dusty. xxx


----------



## Niks

Dusty - Would love for you to be able to come!!  It is a really good idea.  Will have to have a good think about who can come with us.  Thank you for suggestions xx

Kimberley, it might be worth mailing them or calling to see if they have any suggestions!  Thank you  xx

It is just a nightmare.

She collapsed again at work.  They called an ambulance once again.  She refused to go to hospital, but promised paramedic to ring Oxford.  (She hasn't)

Just reading Ambulance sheet.  Vitals were out!  BP 152/95.  Her BP has always been low.  What is that all about!  Her pulse 115.  Told him her pain was 7 (pretty sure she underestimated that).  I guess pain could cause this but really unusual for her.

Just about to e-mail hospital about this latest episode but seems a total waste of time.  Will send it from Jaime as he doesn't even respond to me!


----------



## vtfamily

Niks,
DO e-mail, e-mail, e-mail!  Send a message each time Jamie has an "event" and (for the time being) with weekly status (weight, avg. vomiting, diarrhea, pain level, etc...).  You'll be creating a record and the e-mails will most likely become part of her file.  Since they want to hear from Jamie and she doesn't want to send them messages...can you create a second e-mail account under her name for this purpose?
 cheryl


----------



## 723crossroads

Saying hi and hope you can do what Dusty suggested. They may actually respond to you both better if someone else is there too, so as not to look like an inconsiderate ass!


----------



## Niks

Cheryl!  WHY didn't I think of that!!  xx


----------



## kimmidwife

Niks,
Just wanted to send hugs. I like Dustys idea about an advocate. If you have a friend with some medical knowledge that might be a good person.


----------



## Catherine

Has she ever seen a Neurologist for the fainting/collapses?  This maybe a new direction to try.


----------



## Tesscorm

Niks, I'm going to suggest you get the email address of the head of the IBD department AND the head of Patient Care AND the head of the hospital and copy them in all your emails (even the assistant's email address will do as the assistant won't want to just throw out an email addressed to the 'head').

I'm sure that information must be on the hospital's website.  If not, I'm sure if you just call the main number and ask for the names/emails of the heads of the departments, they will give you, at least, the names.  If they won't give the emails, google the name, you may find it somewhere else (on some bio or press release).  Or, it's likely the email formats will the same as the one for Jaime's GI...  ie first-lastname@hospital.com or whatever the format is.

I would copy them on each and every email, including responses to the GI's emails to you/Jaime until you begin to get some sort of response.

At some point, you will get a response to all the emails...  they may be forced to take a closer look for fear that all those emails would point to neglect or they may ask to transfer Jaime???   Not sure if they can do that but, don't go ahead with this if you're not prepared for that response as well!

Other than going to the media, I don't know what else you can do to get their attention!


----------



## ChampsMom

Hugs, hugs, hugs, hugs, hugs, hugs, hugs....


----------



## Niks

Tess, that's a great idea!  

I need to look into finding e-mails and forwarding everything on.  I e-mailed from Jaime's account yesterday about what happened.  

The paramedic wanted her to call Oxford, when I asked her why she hadn't, she said she is just worried about getting admitted back to hospital.

I guess in the last 8-9 months she has been admitted to hospital 8 times plus at least 3 times where she has discharged herself or refused to stay.  Even with all of this she hasn't really got very far.  

I know we won't get a reply over the weekend, but as this mail has come from 'Jaime' he may get his Secretary to reply to her next week.  I want to wait until 23rd and then see how that goes.  Hopefully he will start to listen!


----------



## Dexky

Niks said:


> Hopefully he will start to listen!


I certainly hope someone does!!


----------



## DustyKat

Niks said:


> Just reading Ambulance sheet.  Vitals were out!  BP 152/95.  Her BP has always been low.  What is that all about!  Her pulse 115.  Told him her pain was 7 (pretty sure she underestimated that).  I guess pain could cause this but really unusual for her.


An increase in BP and pulse is not unusual when someone is in pain and/or anxious and no doubt Jaime was both given the circumstances, bless her. :heart: 

Actually when my kids are hooked up to a monitor it is another way I can tell what their pain/comfort level is without repeatedly asking and disturbing them. Particularly efficient at stopping eye rolls and groans of despair. :ybiggrin: 

Oh Niks, I can well imagine how disillusioned Jaime is with the whole situation. To be repeatedly admitted with the same thing and still no answers it is little wonder she doesn't want to go back to hospital. Not to mention how difficult it makes it for you to now try and convince her when it is needed.  

Thinking of you and hoping the answers come very soon! :ghug:

Dusty. xxx


----------



## Crohn's Mom

Goodness Niks - I've been so wrapped up in my own drama I've missed yours  

I'm so sorry things are still going so badly! I agree with everyone else - do whatever it takes to get their attention !
I love the advocate idea 
I wish sometimes I had some help with this stuff - especially now since I have 2 that are sick at the same time.  Maybe I can be cloned ? LOL 

I hope she gets some help and answers soon!
Big hugs n love n luck
Xoxoxoxox


----------



## kimmidwife

Niks,
Tess's idea about contacting the media sounds like a good one! Maybe you can get them to do an exposé on how patients are not treated properly. How is she doing today?


----------



## Niks

Kim, she would be mortified!  She Has rang the hospital today because she just can't get on top of pain. She's waiting for a call back, she doesn't want to go bank in, but is in so much pain  x


----------



## DustyKat

Oh Niks...:ghug:...poor Jaime and how heartbreaking for you to see her suffering. :ghug: 

I hope they get back to her soon! 

Dusty. xxx


----------



## kimmidwife

Niks,
Maybe you could contact them on her behalf but keep it anonymous.


----------



## vtfamily

Niks,

So sorry to read this today.  Remind Jamie to tell the nurse or doctor who calls her back that she has ALREADY done a, b, c, d, e, f, g, etc.... before calling and the pain will not stop.  Sometimes the docs presume patients are just whining and don't take the time to follow protocols first.  Also, if she can video herself when a pain attack happens it would be VERY helpful.

Hugs.  Cheryl


----------



## Trysha

Try googling" University of Oxford Gastroenterology"
This will give the names and phone numbers etc of each GI specialist and their specific interests---as well as their qualifications.
Sorry to hear of all the terrible trials you have been through and hope you will eventually get somewhere with all of this.
Go to the TOP and get the Chairman of the Dept of Gastroenterology involved---this will get results.
Trysha


----------



## Sascot

Sorry to hear things are still not going well, your poor girl (and you) deserve a break - and a definite diagnosis!  Wish they could help her.


----------



## fosterschick

Any news on t calpro ? X how's jamie and u doing now ? , thinking of u and big hugs ! I know ur struggle , I have just been put on docusate soduim for diah !! Cos she now thinks I'm constipted !! ( 15 times a day mmmm I don't think so ) she had mentioned pentasa before so gunna push for that nxt time !! Getting diagnosed is a nitemare ! X


----------



## Crohn's Mom

(((Big hugs)))


----------



## Angela and Rylee

Niks said:


> Finally heard from nurse. MRE not going to be done as they don't think she'll retain the fluid.  Oh so NOW he believes she's vomiting everything!
> 
> He wants to re do CT scan and he has 'another' test which he's writing to me about!!! She couldn't tell me what. Very bizarre.


Hi niks, I just read your dilemma with the MRE, is it the same as an MRI?? Because my daughter is similar has lost 19kgs and vomits everything she puts in her mouth and needed an MRI.. after I had a confrontation with the nurse(trying to tell me she couldnt have the MRI because it would be a waste of time).. Rylees GI rang me to get some anti nausea tablet, she just had to put under her tounge and it dissolved.. she drank all the liquid no problems.. I dont know if your girl is having the same treatment but I thought if u are this worked for my girl..  take care


----------



## Niks

They wanted her re admitted via A&E. She's  not having any of that, she hasn't been to toilet for a few days so she took citrimag and doing enemas.

I am losing patience with hospitals!! Poor J! .

No news from FC test yet. Hoping to get results before appoint on Tues. 

Angela, that post was before she got admitted to Oxford. They an do it, even if bypassing stomach.  Her MRE was clear, but she'd been on steroids for  a solid 6 months.

It is all so frustrating. I just wish they'd work out what is wrong, and how to treat !!


----------



## 723crossroads

I don't know what to say except I am sorry you are still going through all this. Poor Jaime! I thought I had a rough life before all this. Nope! Praying for you!:hug:


----------



## vtfamily

My heart goes out to both of you.

It is good news that they (the doctors) recognize that they need to have J in the hospital...as long as they plan to really step up the testing and intend to keep her until they have a diagnosis AND a real treatment plan.  I know it is miserable spending so much time in the hospital in order to reach a diagnosis.  I'm sure she understands that this problem is interfering with enjoying and (getting on with) her life anyway.  Ultimately, she is not going to find any answers/solutions or develop a treatment plan at work or hanging out with friends.  Enduring the inconvenience of being in the hospital IS her best route to "normal." 

Hugs to you both.
Cheryl


----------



## lsgs

Niks said:


> They wanted her re admitted via A&E. She's  not having any of that, she hasn't been to toilet for a few days so she took citrimag and doing enemas.
> 
> I am losing patience with hospitals!! Poor J! .
> 
> No news from FC test yet. Hoping to get results before appoint on Tues.
> 
> Angela, that post was before she got admitted to Oxford. They an do it, even if bypassing stomach.  Her MRE was clear, but she'd been on steroids for  a solid 6 months.
> 
> It is all so frustrating. I just wish they'd work out what is wrong, and how to treat !!


My calprotectins have all taken 2 weeks to come back. 

My scopes were done on steroids too, doctor never told me it could cause a false negative until after I paid the £2500 bill. Classy. 

Did she improve when she was on the steroids?


----------



## Crohn's Mom

Awe Niks :ghug::ghug::ghug:


----------



## Catherine

Niks

I was watching "Home and Away" where Sally had just return home with her daughter who had been diagnosed with mitochondrial disease. 

I had never heard of this condition before so I looked it up and it make me think of Jamie. Especially when I read the section: Where does mitochondrial disease hide when it is not diagnosed. And also looked at the graph below this section.

http://www.amdf.org.au/mito-info.htm


----------



## Niks

Isgs, she did initially improve on Pred.  Once tapered to 20mg her symptoms always came back.  However the last time she went up to 30mg (which initially worked a treat in 3-5 days), she didn't improve!

She went to A&E yesterday, her friend took her up. They wanted to put her on morphine to try and help with the pain.  She has oral morphine so discharged herself!  The morphine though isn't doing it and she has passed out twice in as many days.

We have just been to GP.  He has suggested she tries Pethidine.  He thinks that if she can she should wait to go to Oxford on Tuesday, so hopefully Pethidine will take the edge off over the weekend.  

Blimey Catherine!  I have just been reading about mitochondrial disease, there are some things that tie in but a lot that don't (or at least I don't think they do!)  Is worth a mention though, it seems that it is very diverse and could affect a lot of areas.  Thanks for this xx


----------



## Catherine

When I had doubts would mentioning this a very wise woman (Dusty).   I told me there is always a range with any disease.  She puts it so much better.

Did see on the chart where it said these patients could be found in that big list of clinics, one was GI.

I gather from your response you understand why reading about it made me think of Jamie.  I think I read there are over 100 different conditions.


----------



## Niks

Catherine, I think we need to start thinking outside the box, so thank you!  Will definitely look more in to this.

Jaime today actually looks far more comfortable.  I am not happy about the whole pethidine thing, but she is not in agony, so for now it will have to do, at least until Tuesday.  She has even got a bit of colour back!  Hmm..  She says that the pain is still there but more niggly now than really painful.

I am sure that Oxford are not going to like this, but what is she supposed to do!


----------



## 723crossroads

The only part of that disease that seems to fit is Jaime's motility problems and the throwing up. I didn't see any other symptoms that I have heard Niks talk about except maybe her being so tired too. This doesn't sound like something we would want her to have either. I know I keep saying it, but she needs a pillcam in my opinion. I am worried that if this isn't done soon, she may have some irreversible problems.


----------



## my little penguin

Mito typically hits little kids but mitochronidal symptoms can be secondary to other primary conditions since many diseases affect the mitochronidal .

Either way age needs a doc to sit listen and try to get to the bottom of it.

Has she been to any other specialist ?
Endocrinology ? ( they see cover alot of areas) rhuemo ?
Neuro since she vomits think cyclic vomiting syndrome 
http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/

And many many others 
It may be more than one area or thing going on.
Is ther such a thing as a diagnostic md in the uk?
We have them here for those who are complicated but don't quite fit .

Good luck


----------



## vtfamily

Niks,

I keep forgetting to mention...when you do finally get someone to start developing a real plan for Jamie, don't forget to ask about a "B" plan too.  If "A" doesn't work out as expected, what would follow and how long before you move on?

When we were going through the diagnosis phase with Gus, it was helpful to know what was next.  We went through a period of about a year where all of the tests came back negative for what the docs were looking for and not conclusive for Crohn's.  You may have to look at all 100 possibilities, before you find the one that explains everything.

 Cheryl


----------



## vtfamily

Oh, and thumbs up for the pill camera too!!

Worst that can happen is it may get stuck and they will have to remove it.  The upside to that, is that when they do that, they will have finally found "it" and be completely shocked at the same time.

Take care.
Cheryl


----------



## 723crossroads

vtfamily said:


> Oh, and thumbs up for the pill camera too!!
> 
> Worst that can happen is it may get stuck and they will have to remove it.  The upside to that, is that when they do that, they will have finally found "it" and be completely shocked at the same time.
> 
> Take care.
> Cheryl


That was my thoughts exactly!


----------



## vtfamily

723crossroads said:


> That was my thoughts exactly!


We've done the pill camera twice...both times it was trapped by strictures that never showed-up on an MRI, MRE, x-ray, CT scan, endoscopy, colonoscopy, etc...

The first one had to be removed surgically (laproscopically) and was our doctors fist "shame on me" (him...not me) moment.  The second one was found when the doctor decided to do a follow-up endoscope to the pill-cam and found a "blockage."

Okay, so picture it.  Two pill-cam studies.  Both cameras were stuck...for weeks/months AND didn't make any difference to Gus, because the strictures/blockages he was already experiencing were soooo bad.  BUT without those events, Gus would likely still be in some sort of "treatment limbo" because the doctors couldn't "see" what we were really dealing with.

As they say...it's better to be lucky than good sometimes!


----------



## Niks

Thanks everyone. MLP, she hasn't been referred to any other specialist.

She has really been struggling with pain. We are now on gastro ward in Oxford. Waiting for doctor! Been in A&E all morning.  She just wants them to get on top of pain and then go home, not sure that's going to happen!


----------



## 723crossroads

Prayers that today is the day they wise up and do a pillcam!!!:dance:


----------



## Niks

Don't think so! They are going to clear her out and give her more pain relief and fluids.


----------



## 723crossroads

Did you request a pillcam? Ask to speak to the person in charge and present your case as to all she has been through and why can this not be done as a precaution? Ask for it in writing why they will not do it because if something happens, you will present them with a lawsuit for negligence after all she has been through. Ever think about getting a legal advocate?


----------



## Niks

Interest not great here. Latest BP 78/42! Retook manually 80/45. Could be why she's been passing out! What causes low BP?


----------



## Niks

She's on IV fluids  , drinking loads and no vomiting today! So not Dehydation


----------



## DanceMom

I've always had low BP too, even during times of stress and pregnancy.  During my college years I was busy (and poor) and not eating properly and began to experience awful headaches and fainting episodes.  After much testing it was determined that I had low sodium (not sure how accurate that diagnosis was).  I was given a prescription medication and encouraged to eat more healthy foods with extra salt.

I'm not sure how healthy your daughter is eating, but if she is still vomiting there's a pretty good chance her body isn't absorbing what it needs.  Ugh, I just feel so bad for her (and you!).


----------



## xmdmom

Malnourished people often have low blood pressure.

I'm assuming they've ruled out adrenal insufficiency which causes nausea, vomiting, fatigue and low blood pressure; also can cause darkening of the skin.  Doesn't cause abdominal pain or bleeding.  It would respond to prednisone.


----------



## xX_LittleMissValentine_Xx

Your poor girl. I hope she starts feeling better soon!
Is she staying in tonight Niks? x x


----------



## Niks

Holly, Yes they've kept her in.  

She had everyone running round when her BP was that low, they did ECG, which to start with really confused everyone because the lines were wired up wrong!!!  lol.

Her pain is bad lowest 5 today, but upto 9 :-/.  It is the only reason why she went in.  Today she hasn't vomited at all!  I don't remember when that last happened.  Yesterday only twice and she has been opening bowels every 2 - 3 days.  Her x-rays still show she is backed up.  She didn't expect this, so they are doing citramag and enemas, which have got her going.

She thinks she saw undigested sweetcorn, and hasn't eaten that in around 4 weeks!  Is that even possible?

Teresa, I will ask about pillcam, and will ask in writing for reason if not an option, I think that is a great idea!

DanceMom, she eats a really good diet, especially now she is gluten free.   Pretty much all freshly cooked food, she loves fruit and veg.  But maybe all the vomiting isn't helping, or maybe she isn't absorbing nutrients properly?  I guess that needs to be looked at.

xmdmom, I have no idea!


----------



## fosterschick

Awww no niks just caught up with this , ur poor baby girl and poor mum ! Hope they can sort her pain at least , hope t calpro test comes in for u maybe shed some light , or promote more testing x big hugs x


----------



## upsetmom

:ghug:..Thinking of you ang J.

I hope they finally figure out whats going on the poor girl needs a break.:hug:


----------



## xmdmom

I second that! Sending hugs!


----------



## Niks

Searching through a whole load of articles, Addison's Disease keeps cropping up.

I know that they did test J for this back in March, but everything seems to fit!


----------



## xmdmom

In Addisons, the skin typically gets darker especially over scars, in the underarms, creases of palms, and areas exposed to sun.


----------



## kimmidwife

Hi Niks,
Just wanted to send a hug and say I am thinking of you guys. The letter about the pillcam is a really great one!


----------



## Devynnsmom

Niks, I am just catching up. OMFG! Poor Jaime! I really hope they will give her the pill cam.


----------



## Catherine

Before Sarah was dx with Crohn's we saw a neuro due to fainting.

At that time her blood pressure was 80/45.  His believe was the blood pressure was due to low body weight, salt and fluid intake.  The fainting was caused by postural hypotension.  She also had a EKG performed.


----------



## Niks

Maybe we need to get her referred to a neuro!  

Her BP over night has been upto 84/51, so a little better!  She has been craving salty things.  She has never added salt to food, but has been doing this over last few weeks and wanting crisps (chips to most of you guys) much more, the saltier the better.

Maybe she does just have a salt deficiency.

Her weight is better, she is 5kg heavier than she was when she was admitted in March!  This must be down to holding much more of her food down and fortisip compacts.  So I don't think she is malnourished this time round.  Last time definitely!


----------



## Sascot

Sorry to hear she is back in hospital - hope they do something this time and not just let her out with pain relief and nausea tablets.  Poor girl!


----------



## xX_LittleMissValentine_Xx

All my fingers crossed you get somewhere this admission!
I'll be thinking of you! x


----------



## Dexky

Niks said:


> ing.
> 
> She thinks she saw undigested sweetcorn, and hasn't eaten that in around 4 weeks!  Is that even possible?


Niks, when my son eats raw apple it doesn't digest at all.  Fortunately, he's never had motility issues so it doesn't stay long but I could see that scenario should he get backed up.  We've never been able to pin corn down as a problem for him but for many on here, it's a no go.  I can't imagine what kind of chemical changes corn could go through in the gut over 4 weeks...fermentation maybe?  Could that and/or other food sensitivities be responsible for some of J's problem?


----------



## dannysmom

Hi Nik ... I do not even know what to say but wanted you to know I am thinking of you guys. If you do talk to doctors about Addison's, ask if she had the ACTH stimulation test? I had wanted this test for Danny, but the endo did not think it was needed.


----------



## Niks

Okay.  She's back home!  2 X Citragmag and enemas seemed to do the trick with clearing her out (although without vomiting and actually having a BM every 2-3 days she didn't think that she was that bad!)  Pain a little better and BP has gone up to 95/50 so a little better.

She has been told to stop all laxatives and is now going to take Pruclaopride 2mg once a day.  Anyone with any knowledge of this?  Just done a quick google, looks like it may do the trick!

She still has to go to see consultant on Tuesday, so have a lot of questions regarding all of this for him, including pillcam, pain, vomiting, bleeding and blood pressure!

They don't think Addison's as her Sodium levels are fine (141).

The only bloods that were only very slightly low was platelets (145 Normal range 150-400)  but all other bloods good so not worried about this.

Diagnosis at discharge - Dysmotility (again!)  and Constipation predominant IBS.  

I guess if this new medication works then this is a pretty good outcome, but we'll have to wait and see!  They don't have it in stock at the hospital, so pretty sure that the pharmacist won't have it either, she will have to get it ordered through GP tomorrow.


----------



## xmdmom

Pruclaopride is a potent stimulator of gut motility that is used with chronic constipation.  From what I read it seems to work in women in whom laxatives didn't work.
Hope it works for her!


----------



## Niks

Sounds promising huh!  , hopefully it will at least sort that out, and then we can see where she stands.  It may sort the whole problem.  Just odd that this is not how it all started!


----------



## 723crossroads

I sure hope this does the trick Niks, but I would still push for pillcam just to be safe. Ya know? She has gone through far too much to just be motility to me. At least there is some promising things happening. Why on earth didn't they try this med a long time ago? Dr.'s tick me off!!!:voodoo:


----------



## Niks

pTeresa - apparently People have to meet a certain criteria, with 6 months or more severe constipation or dysmotility!  Plus some other criteria.  Patients have to meet the 'NICE' criteria.  I don't know whether this is just UK?  Yes will ask about pillcam too!

Jaime passed out again when we got home.  Was very brief, but she hit her head on the sink!  Poor bugger.  She said her pain was only about 4 or 5 so thinks it may be blood pressure.  Do you know if slightly low platelets can cause low blood pressure?  Have tried looking but a bit confusing!


----------



## littlemissh

Low platelets do not cause low blood pressure. At that level I wouldn't worry at all about her platelets. Its reassuring to a degree, because platelets tend to rise with inflammation so with hers being on the low side, that's good.


----------



## Niks

Thanks Littlemissh!    xx


----------



## 723crossroads

Niks said:


> pTeresa - apparently People have to meet a certain criteria, with 6 months or more severe constipation or dysmotility!  Plus some other criteria.  Patients have to meet the 'NICE' criteria.  I don't know whether this is just UK?  Yes will ask about pillcam too!
> 
> Jaime passed out again when we got home.  Was very brief, but she hit her head on the sink!  Poor bugger.  She said her pain was only about 4 or 5 so thinks it may be blood pressure.  Do you know if slightly low platelets can cause low blood pressure?  Have tried looking but a bit confusing!


I will let you know.


----------



## 723crossroads

I looked it up and low platelets don't seem to cause low blood pressure. Low weight does though. Low platelets cause passing out and can be caused by certain medications. If they drop ,then they suggest getting tested (bone marrow) for non hodgkins lymphoma. The passing out is worrisome. Keep getting her blood tested every 4-6 weeks and keep watch on her platelets as this can be a serious thing. Just my advice. When I had my son my placenta was leaking protein into the blood and all my platelets were gone from them trying to fight the protein in my blood. So if something is wrong, platelets seem to try and fight things off. I hope the Dr will keep monotering Jaime for all these symptoms. My sister is very thin for her height and weighs less than normal and she has low blood pressure. Always did. She used to faint a lot!


----------



## DustyKat

Hey Niks, 

Our guidelines for the approval of medication I think run pretty close to yours. This is lifted from an Australian Government publication regarding Prucalopride:



> *Before prucalopride is considered patients must have tried at least two different types of laxatives from different classes (at the highest tolerated recommended doses) for at least 6 months, but have not had adequate relief from constipation.
> 
> *If treatment with prucalopride is not effective within 4 weeks, the benefit of continuing treatment should be reconsidered.
> 
> http://www.health.gov.au/internet/main/publishing.nsf/Content/pbac-psd-prucalopride-nov11


The document is the results of the PABC consideration of the drug to be placed on the PBS. It does make for some interesting reading as it includes trial results. 

Thinking of you both Niks! :heart:

Dusty. xxx


----------



## Niks

Thanks Dusty!  I think found this article too.  It seems it could be pretty positive!  Fingers and everything else crossed!

Thanks too Theresa.  Will definitely keep an eye on it!

xx


----------



## littlemissh

They are only just low and if her hb and white counts are normal then it is extremely unlikely to be anything worrying. Platelets at that level wouldn't cause passing out.
It is worth rechecking her fbc in a few weeks to check but I wouldn't worry.

What is her normal bp when not in pain ? It is not unusual for young women to have bp of 90-100/ 50-60. I would imagine it was lower when in hospital because she was dehydrated. Low bmi as crossroads said can cause bp to be lower as it doesn't need to be as high.
A bp if that level could certainly cause dizziness and if mildly dehydrated, fainting.

Make sure she doesn't jump out of bed, stand up quickly after a hot bath and is careful after a hit shower ...lots of fluids.


----------



## Niks

littlemissh, you're right.  Her BP is normally pretty low.  But it did drop right down and couldn't even be measured on the machine they had to do it manually.  I am sure this is why she is passing out.  I don't think she was dehydrated as she was on IV fluids and was drinking plenty.

Her BMI is much better now too, I am a little perplexed as to why her BP is dropping so low. 

Her Platelets are only a little out so not really worried, just wondered if there was a connection, but as there isn't should all be fine.  Thank you for your help!  xx


----------



## Catherine

Niks

We only had one appointment with the neuro who dx Sarah with postural hypotension and send us on our way after a couple of heart tests to rule out some more serious things.

But he also told us if she faint more than 3 times in the next 12 months to come back and see him.

He also explained to Sarah the warning signs of a faint coming on which allowed to avoid some by getting her head lower.

Following is how he confirmed postural hypotension in his office.

1.  Blood pressure taken while sitting on the couch (85/45).

2.  Blood pressure taken after laying on the couch for 5 minutes (80/45)

3.  Blood pressure taken after standing very quickly (60/40) (He led her arm to stop her falling while doing this one).  

In Sarah's case she is prone to fainting/dizzy spells when her weight is under 56kg.

After this appointment she began to tell me all the times she become dizzy, it was like it was so normal that she didn't mention it.

Things like at swimming they would swim 25 metre, get out of the water and walk back.  This would cause to become dizzy.

Good luck, getting that neuro appointment.


----------



## Niks

Thanks Catherine x

Well FC test results back fine - 15! So that's all good.


----------



## CarolinAlaska

Niks, I'm sorry I've not been around for a week or two.  I'm sorry Jaime is still suffering and now having low BPs.  I hope the GI doesn't blow her off on Tuesday, but has some solutions.  I'm not sure of the med your do put her on.  Is it similar to Amitiza?  That is used in the US for chronic constipation and works really well for some people.  Could the long-term pred be a cause of her low BP?  I don't think you've ever said anything about her skin color... does she look dark/tanned more than you'd think she should?


----------



## Dexky

I hope the new med does the trick Niks!!  She's been going through this so long, you may as well give it every benefit of a doubt!


----------



## Niks

Carol - she generally looks really pale and pasty. Sometimes grey, with dark circles under eyes. So no, no darkening of skin xx

GP had never heard of meds! He had to look it up, but now ordered. Will be there tomorrow.


----------



## CarolinAlaska

I've not heard of that med either.


----------



## Niks

Jaime's appointment on Tuesday was pretty good, saw two GI's! they have not ruled out doing pillcam!  They want to wait to see how this new medication pans out.  She has been booked for bone density scan and they have checked a lot of her bloods,  apparently her last Thyroid blood test was pretty low (don't know numbers) so checking that, B12, Vitamin D and a whole load of others.  Not really sure what low thyroid really means, but maybe it was just a one off.

She took new medication for the first time this morning and after pretty bad pain managed to go to the toilet after just 2 hours of taking it!  Better than Citramag!  She has been again later, with a little blood, but she said wasn't too bad.  So that in itself is really encouraging!

Jaime told them that her GP panics when she goes in as he doesn't really know what to do with her.  One of them said they feel like that too as they are the end of the line!  He said it light heartedly, though, he said that he doesn't think this is the end of things and things will probably change, but now feels that she is getting the best treatment for what is going on at the moment.

I actually feel happier that they are taking her seriously and hoping that this new medication really works for her!


----------



## QueenGothel

Low thyroid can actually cause an ileus or slowed bowels.  I have Hashimotos Thyroidis and so I had mt DD tested for it when she had an Ileus. I know they don't think this anymore but wouldn't it be wonderful if it were just hormone replacment she needed.


----------



## Niks

QueenGothel said:


> Low thyroid can actually cause an ileus or slowed bowels.  I have Hashimotos Thyroidis and so I had mt DD tested for it when she had an Ileus. I know they don't think this anymore but wouldn't it be wonderful if it were just hormone replacment she needed.


It would be incredible!!!  Could it cause fainting too? x


----------



## QueenGothel

There is whole slew of things it can effect. Fainting and dizziness can be a symptom.  I use to pass out all the time as a kid.


----------



## my little penguin

Thyroid cause cause alot 
Slurred speech
Coma
Not something to mess with
Make sure they tested 
Tsh
T3
T4

Maybe an endocrinologist would be a good idea since they deal with alot of system
Which can meds with the Gi tract


----------



## Niks

They were all on the list MLP, she had to go to our local hospital to get them done, because we were too late in Oxford!!

xx


----------



## dannysmom

Is this the first time they tested her thyroid? Do you know the numbers? (just curious) I had RAI on my thyroid due to Graves, and the doctor waited too long to begin supplementation. I went SO low my TSH was 39 ... just awful. I could barely eat because my digestion backed up so much. It would be an easy fix     Hope this new medicine helps!!


----------



## vtfamily

Don't know about the UK, but I have noticed that the doctors here approach IBS differently from IBD.  It's almost like IBS is "just aches and pains" (like a cold) compared to IBD being a "serious disease" (like meningitis).  Jamie has been feeling so awful for so long, I hate to see the doctors minimizing her condition.

Assuming she is passing food that is weeks old...that is much more than a motility issue.  Ask yourself...how poorly does one's digestive system need to be working for weeks old food to be recognizable as it passes???  I'd bet that whatever she is passing in her bm every 2 to 3 days is actually "going around" some kind of blockage.

Oh, how I pray for answers for both of you.
Cheryl


----------



## 723crossroads

sure hope is a thyroid function problem,wow that would be so awesome for her!


----------



## DustyKat

When did she have the bloods done? 

Do you have the results? 

Dusty. xxx


----------



## Dexky

I hope this new turn pans out Niks!!  Were both the GI's seeing J for the first time?  I hope one of them has a dogged determination to find out what's wrong with her!!!


----------



## Niks

DustyKat said:


> When did she have the bloods done?
> 
> Do you have the results?
> 
> Dusty. xxx


She had them done yesterday Dusty, so haven't got them back yet. 

Dex, she's seen them both before, but not together!

She is a little worried as now bleeding dark purple blood.  She called GI secretary, she called back and said not to worry unless it's lots.

The tablets making her go well though!!


----------



## DustyKat

I hope the wait isn't too long Niks! We get our results the next day, same day if their is a major issue. Good luck!  

Good to hear the tablets are working!  

Dusty. xxx


----------



## Dexky

Niks said:


> She is a little worried as now bleeding dark purple blood.  She called GI secretary, she called back and said not to worry unless it's lots.


If she hadn't been going through hell for the last damn near a year now, I'd maybe be able to not worry for a day or two!!  Do these GI's know what their secretaries are telling their patients??


----------



## Niks

Dex - she spoke to her GI!  Will keep and eye on it though, because it is not right!!  :ymad:

Dusty - if in hospital we get results straight away, but if done as out patient can take ages!  I am a bit confused as to where to get results from.  Her surgery don't have them.  They were requested by Oxford and done in Swindon!  :confused2:

Will get her to call Oxford on Monday if she hasn't heard from anyone!


----------



## DustyKat

I'm not sure how things work there Niks but here it is pretty rare that bloods done as an outpatient aren't sent or copied to the GP but I know your system can be difficult because of the trusts?? 

I would contact the office of the doctor that ordered them. 

Good luck! 

Dusty. xxx


----------



## 723crossroads

Niks said:


> Dex - she spoke to her GI!  Will keep and eye on it though, because it is not right!!  :ymad:
> 
> Dusty - if in hospital we get results straight away, but if done as out patient can take ages!  I am a bit confused as to where to get results from.  Her surgery don't have them.  They were requested by Oxford and done in Swindon!  :confused2:
> 
> Will get her to call Oxford on Monday if she hasn't heard from anyone!


For us the results go to the DR.who ordered them and they have them within a few days. But the Dr.s don't always get around to looking at them till they have time. They only call us if something is wrong. Otherwise we call them and ask. Our blood is naturally blue, it only turns red when it hits oxygen. Why hers is staying purple is beyond me. Let us know .:hug: Hang in there!


----------



## Kimberly27

Wow Niks!  I've been gone and just caught up.  What a nightmare!  I'm so glad you are being taken seriously now.  

Hugs to you both.

Kimberly


----------



## DustyKat

Our blood is red...deoxygenated blood being blue is a common misconception. 

Oxygenated blood is bright red whilst deoxygenated is dark red in colour. I would hazard a guess and say what you are seeing is very dark red blood. 

Dusty. xxx


----------



## DanceMom

Is there any chance the "purple blood" is actually food? I thought the same of A once and then realized it was actually undigested grapes.


----------



## Niks

yes it's just very dark. To me it looks more purple than red, Not bright red! It is definitely blood, she has some bleeding even without a BM :-/


----------



## xX_LittleMissValentine_Xx

I've had bleeding without a BM before too, it was quite horrible, but for me bright red! 

They took it seriously when I was in A&E, but that was me going in saying "I have crohn's I'm in a lot of pain and bleeding"

I know its very different for you!  

I'm so sorry, every time I come to this thread I'm hoping you say they have figured something out!! x


----------



## Mehita

And it's not menstral blood or menstral clots?


----------



## my little penguin

^^ that break through bleeding?

Did they ultrasound for  endometriosis  or Polycystic ovarian syndrome?
Both could cause a lot of havoc .

ENdo could help figure that one out


----------



## Niks

No. Definitely not menstrual. She has depo jab, and also hormone pill as she was getting constant breakthrough bleeding. Now nothing!! Initially she was sent down the gynae route, no cysts, no endometriosis . This was checked a couple of years back before gastro got involved.


----------



## littlemissh

Blood results in the uk get to the gp in one of 3 ways.

If the gp uses online requests at the local hospital he can get results on line and go onto the system to check if the hospital has requested some... The hospital requested ones don't automatically get sent on line only the ones the gp has requested.

When a patient is seen in clinic at hospital the consultant informs gp of results of bloods in clinic letter or as an additional letter if abnormal and they want gp to action.


----------



## DustyKat

The colour of the blood may give some clue as to where it is originating from Niks. 

Since food has been ruled out as a cause it sounds as if the blood may be originating perhaps in the small bowel, on the lower end?? Not high enough in the small bowel for it to have turned black but not in the end of the small bowel or colon for it to be bright red. 

Having said that transit times will have an affect on the appearance of the blood so may well muddy the waters.  

Dusty. xxx


----------



## 723crossroads

Anything new going on Niks? Sure is quiet here the last couple days and that is good I hope!


----------



## Niks

Afraid not quiet Theresa!  Been in A&E all day.  She woke up in such a state at 4am in absolute agony.  She took Tramadol, Oramorph and Pethidine, with absolutely no relief.

Called GP, who basically panicked and sent her straight to hospital.  She was in A&E for a good 3 hours in so much pain.  Obs were all over the place.  Heart and pulse ranged from 50 - 140.  BP really low.  But bloods all good!

Finally saw GI, but she was feeling much better.  He thinks that because it has been such a long time that her bowels haven't worked, that now she is going daily, with the new meds that it will take a while for her pain to settle down!  He has advised to go on soft food and juicing.  Will definitely try it!

They have not received Thyroid and B12 results from Swindon!  He didn't re-do them as he doesn't think that the results of these will impact on her pain!  Why are things so bloody complicated!  GRRRR  :ymad:


----------



## Niks

Oh - and he is not worried about rectal bleeding 'at the moment'!


----------



## Kimberly27

Hugs!  My heart breaks for you both.

Kimberly


----------



## Dexky

Amen to that^^^


----------



## QueenGothel

If he were an endocrinologist then maybe he can comment about the thyroid. As I said before it can slow the intestines to a halted ileus.  So don't mess with the pituitary gland.  He should stick to his specialty.


----------



## Catherine

Niks

I'm hoping Maree. will see this and comment on thyroid conditions that she has researched.  There are many thyroid conditions in our family.  Maree has surgery on her thyroid when she was not much older than your girl.


----------



## 723crossroads

So sorry to hear this Niks. Praying for you both again! Something has to give soon! Hugs hon!:hug:


----------



## Maree.

I don't have a lot to what QueenGothel has had to say on Thyroid conditions definitely could be big part of the issue.  

Hopefully the thyroid tests will come back positive.

My thoughts continue to be with you & Jamie, hope you find some answers soon.


----------



## Niks

Thanks everyone xxx


----------



## kimmidwife

Thinking of you guys! How is she today?


----------



## 723crossroads

I was wondering too, hoping you would let us know....:heart:


----------



## Niks

She has pain, but always does!  She is coping much better today, thank goodness, and is definitely going down the soft food route.

Her GP called her today saying her ferritin levels were low and he was going to prescribe iron.  I do not know numbers!  I went to get a copy of her results but they are not on system yet, the receptionist said he must have got it from the central medical site.  He was not there when I got there!!  Grrrr..  Really want to know numbers especially with thyroid and B12.


----------



## 723crossroads

Thanks Niks for letting us know. Hope you get those no's. soon. Thyroid is very important. Have them check for hashimotos antibodies too. It can wreak havoc on you too. It is a thyroid disorder too.

Sorry this went offline when I sent this. So finished once back on.


----------



## 723crossroads

Thanks Niks for letting us know. Hope you get those no's. soon. Thyroid is very important. Have them check for hashimotos antibodies too. It can wreak havoc on you too. It is a thyroid disorder too. Hope you soon get some good news.:hug:


----------



## Niks

I know that things haven't been great for Jaime, but I really do think (HOPE) that we are heading the right way.  She has not vomited AT ALL for FIVE days!!!  :dance:

This must mean her bowels are clearing out.   Now just to sort out the rest!

:confused2::ybatty:


----------



## 723crossroads

That is awesome Niks, any improvement is welcomed I'm sure!:dance:


----------



## vtfamily

Happy for some relief!


----------



## Sascot

That's great for some good news!  Hope things continue to get better!  Be careful on the iron supplements as some can constipate.  I know the Sytron liquid my son takes is supposed to be gentle and he has never got constipated on it.


----------



## Mehita

Rather sad that we get excited when our children have vomit-free streaks, isn't it? I think we're going on six months here and couldn't be happier.

I hope she holds steady, Niks.


----------



## ChampsMom

Niks said:


> I know that things haven't been great for Jaime, but I really do think (HOPE) that we are heading the right way.  She has not vomited AT ALL for FIVE days!!!  :dance:
> 
> This must mean her bowels are clearing out.   Now just to sort out the rest!
> 
> :confused2::ybatty:


Yeah!!!  :dance:  Oh Niks...  Praying for the sorting out!

:hug:


----------



## 723crossroads

This is wonderful news and I must say thanks to God because I do believe in prayer and he is helping Jaime find the right answers. :hug:


----------



## Niks

Well her bowels certainly are so much better!

She feel so poorly though, no energy, literally wanting to sleep all the time.  Feeling nauseous so appetite really low.  Starting to lose weight again.  Bleeding in stools much more regular.

Last night after all that time vomited, only once, but some little blood clots in vomit! :ybatty: 

She fainted twice yesterday.  She literally just goes out cold!


----------



## Catherine

Can the gp get her a urgent referral to another specially. Eg not a GI as they are out of ideas.

She shouldn't be fainting so much.


----------



## QueenGothel

Og that is terrible.  Fainting is scary.  Anemia?  Gosh I don't know how you are dealing so well. I would be a crazy lady.


----------



## my little penguin

http://www.allhealthsite.com/obstipation.html

Just for you 
Hope it helps


----------



## Niks

Wow MLP, thank you!  Plus the recommended new medication is Pruclaopride!  It really does seem to be working too.

Finally have her blood results!  Her B12 is okay.  It is 262.

Thyroid TSH is within normal range at 1.0  (normal 0.35 - 6.9)  Is this the only test they do?  I can't see any others relating to Thyroid, so I guess there is nothing wrong with this after all.

Her Ferritin level was only 12 (normal 30-300) - She now has Iron supplement to sort this out, but hoping it won't constipate her more!

Catherine, I think maybe another specialist may be the way forward, but hopefully the Iron will help!

Mary - I would be going crazy if I was you, with all you guys are going through!!!  xx


----------



## littlemissh

Niks,
If TSH is normal then the labs don't check t4, t3 as not necessary.
What iron is she on. Ferrous fumarate is the most GI friendly one. 
Often docs prescribe ferrous sulphate 200mg twice to three times daily. If she struggles with that dose, either drop to once daily as it is better than none and will still work but a bit slower...or ask for ferrous fumarate.
Some cereals have loads of iron added as do some nutritional drinks, bread etc.


----------



## littlemissh

By the way. What does her GI say is the cause of the blood. I would want to tie him down and ask specifically why he thinks she is bleeding.


----------



## Niks

littlemissh said:


> Niks,
> If TSH is normal then the labs don't check t4, t3 as not necessary.
> What iron is she on. Ferrous fumarate is the most GI friendly one.
> Often docs prescribe ferrous sulphate 200mg twice to three times daily. If she struggles with that dose, either drop to once daily as it is better than none and will still work but a bit slower...or ask for ferrous fumarate.
> Some cereals have loads of iron added as do some nutritional drinks, bread etc.


Thank you!  She has been given Ferromate 210mg x 2 daily.  Hopefully it will pick her levels up, I am thinking her fainting episodes could be due to this!


----------



## Niks

He is convinced that the blood is through a tear through straining!


----------



## Trysha

Hi Niks
this article may be helpful to you regarding thyroid tests published by the British Thyroid Association
http://www.acb.org.uk/docs/tftguidelinefinal.pdf
Opinions differ with regard to the tests required and can vary according to country.
I have Hashimotos and annual testing with all three....TSH T3and T4. These tests are usually done for initial diagnosis here. (Ontario) as well as follow up.
My initial diagnosis was made by an endocrinologist and all tests were done .
Hope this will be helpful to you.
Hugs and best wishes
Trysha


----------



## littlemissh

A low ferritin in itself is less likely to cause fainting unless it has been low for a while and caused a low hb. I run an Hb of 7-9 and my ferritin is 7 at the moment and I do not feel faint if my hb is above 8-9, though I have got used to it I think. When my hb gets below 7 I do get very lightheaded though.
In Jaime it may be a combination of pain, low BP, malnutrition and low BMI and if her hb is low then that as well. A perfect storm as the phrase goes.

Reg the bleeding,That is not an unreasonable suggestion, particularly with a normal calprotectin- though would expect fairly bright red blood if this was the case. Though if she is constipated and she has an internal anal tear then it may be in the rectum for a while, hence the darker colour.
I bleed from the small bowel and it is very obviously black, no mistaking it...yuk.


----------



## Niks

Thank you Trysha xx


----------



## vtfamily

Niks,
I wish I had something wonderfully helpful to insert here.  Just know that I am checking on you and Jamie daily and praying for relief for you both.

Seems to me that blood from tearing and straining wouldn't go on and on like this.  Has the doc explained why he hasn't done a colonoscopy to verify his dx?  If he is correct, it would be easy enough to confirm with a scope.

Cheryl


----------



## Maree.

Will comment on the the Thyroid test results too, but I'm stretching my memory here as I've not had a thyroid problem for 20 yrs (since a partial thyroidectomy). 

I've always had all 3 thyroid tests run too.  I was constantly sick in my teens with no clear cause was labelled Chronic Fatigue Syndrome (another horrible catch all like IBS).   I had lots of thyroid tests run as their is a very strong history of thyroid disease in out family. The results we're always normal on TSH but sometimes outside normal range on other numbers) but so inconsistent that it didn't get to the diagnosis point.  In my early 20s I developed swelling & pain in the thyroid gland,  after a series of scans it became clear that one side of the thyroid had a large cyst in it and fluctuating hormone production, and the other side was constantly playing catch up to try and compensate.   Removal of the faulty part of the gland made a huge difference to my general health and fixed my exhaustion issues.

I'm not saying your daughter has a thyroid condition, just cautioning about ruling out thyroid completely.   If Jamie's health problem continue & she remains without a clear diagnosis, I'd push to have thyroid retested periodically and preferably get full panel done not just TSH.   Also, if she has or develops pain or swellling in Thyroid area I'd push for scans of the gland even if the test numbers are normal. 

I agree with a couple of other poster who suggested trying to see a different sort of specialist (non GI).  I think a totally fresh perspective from a different angle might be what you need.  I think the recent fainting offers you an opportunity to lobby for that.


----------



## Dexky

A tear from straining wouldn't explain blood in the vomit would it??


----------



## Niks

Thanks everyone.  I think with her fainting we need to look at another specialist too.

Dex - No, but they say she could have a small tear in her stomach due to vomiting!

xx


----------



## xmdmom

It would be *extremely *rare to have hypothyroidism and a normal TSH.  This only happens in people with hypothalamic pituitary issues.  The pituitary senses when there is not enough thyroid hormone and makes more TSH to stimulate the thyroid to work harder; that is why an elevated TSH is the test used to detect hypothyroidism. The actual thyroid hormones levels are affected by protein binding, so you can sometimes have abnl results of t4 and t3 but really be completely euthyroid.  (I know what I'm talking as I am a former pediatric endocrinologist.)   In malnourished people T4 and T3 can be low but it can be harmful to treat because it is the body's natural way of coping with malnutrition or sig. illness.

Yes I would definitely pursue a cause for the fainting as she certainly could injure herself when she falls-  Do I remember correctly that this already happened to her?

(((HUGS)))


----------



## my little penguin

http://www.medicinenet.com/script/main/mobileart.asp?articlekey=472

Has she seen Neuro ?
Maybe them and cardio


----------



## DustyKat

:ghug::ghug::ghug::ghug: Thinking of you Niks. 

Is she able to keep up her fluid load through all this Niks? 

Dusty. xxx


----------



## Niks

MLP - she hasn't seen any other specialist, apart from gynae when she was 15-17.

She drinks plenty Dusty and now she isn't vomiting everyday she is at least hydrated. 

xx


----------



## xX_LittleMissValentine_Xx

I hope the iron supplements don't make her feel ill! I always forget when I go on them, I think oh good I'll start feeling better now and then along come the stomach cramps!


----------



## 723crossroads

Just wanted to say hello and hoping Jaime is still doing better! You too luv!


----------



## kimmidwife

Niks,
I was just thinking is there any correlation between when she vomits and when she faints? Meaning does she vomit and then faint? If yes she could be having a vasovagal response. Like the others said though she needs to see a neurologist and cardiologist ASAP and I would think possibly about an endocrinologist as well.
This is a very interesting article on syncope (fainting):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC506859/


----------



## Niks

Only sometimes Kim.  She can also faint without vomiting.  

She is going to see GP tomorrow to see if she can be referred to someone about the fainting.  It really worries me as she drives :eek2:


----------



## 723crossroads

Niks said:


> Only sometimes Kim.  She can also faint without vomiting.
> 
> She is going to see GP tomorrow to see if she can be referred to someone about the fainting.  It really worries me as she drives :eek2:


I think it could be from lack of certain nutrition or potassium or something like that. Or low blood pressure. Or even certain meds can cause it.


----------



## Trysha

Hello Niks
Sometimes severe abdominal pain can cause fainting.
Towards the end of a colonoscopy my blood pressure dropped to 80/45 and oxygen was administered. I felt a lot of pain.
I did not really know what was happening  ---being sedated---but was very aware of the oxygen being given.
The GI said it was a vasovagal syncope due to a manoeuvre he had made.
A few months later due to recurring symptoms my GP ordered full work up with extensive cardiological testing and a referral to a cardiologist.
A treadmill stress test was done and also a tilt table test.
It showed vasovagal syncope. As advised by the cardiologist
I have a measure of control  by fist clenching to ward off an attack.
Does not happen very often
Two weeks ago I had surgery to deal with a bladder tumour, will soon know results of biopsy.
In the post surgical recovery unit I had fierce abdominal pain in all the crohn's areas., it was quite unbearable and I wanted to die........literally.
They could not figure why this happened because dilaudid (di hydromorphine) had been given to stop pain.
It certainly did not work for this pain, seemed to increase it... and the nurses reported vasovagal syncope.  
When I regained consciousness they had turned up the oxygen---hissing away......
I explained the pain was intolerable and that made me faint, never knew that could happen when already lying down!.The recovery staff said it was a vasovagal attack.
Some of the literature refers to morphine and codeine actually causing abdominal pain, so I intend to discuss this with the GI.
He never gives anything for pain.
It was prescribed by the urology team.Will be talking to them as well.
The surgery itself was a breeze but it activated the crohn's.......lucky me!
Hope this may be helpful to you to know.
There are articles on the web regarding this type of analgesia causing pain.
Poor Jaime...wishing her well.
Hugs

Trysha


----------



## Niks

Hi Trysha, thank you!  I hope you are feeling much better now?

I do think that some of her fainting is due to pain.  Sometimes it is standing up, even though she is really careful to stand up slowly and when she has a BM she feels dreadful, so much pain and often can pass out on the toilet!

I have written to her GP and cc'd her Doctors in Oxford .
explaining what is going on and asking if he can refer to another specialist.

Although her B12 was normal am a little worried as she had the loading doses earlier in the year and her levels seems to be dropping pretty quickly.


----------



## Niks

Okay.  Have a massive dilemma!

Jaime had a really bad night.  So much bleeding and very loose watery stools, lots of pain and she fainted twice.

Went to GP this morning.  He said inflammation and prescribed 30mg prednisolone!  She is scared to take it because GI hasn't prescribed.  She called and left a message with Secretary and no reply.  I e-mailed and no reply!  So bloody frustrating!!??  What do you all think?

I think if she takes it and it clears up inflammation (if it is inflammation) then Oxford will not think it was there in the first place.  If she doesn't take it she could end up even worse!  GRRRRRR

On a better note, GP has made an appointment with me on Thursday to discuss letter regarding referring her to another specialist!!!  At least he is going to talk to me and listen to what's going on properly.


----------



## 723crossroads

Niks said:


> Okay.  Have a massive dilemma!
> 
> Jaime had a really bad night.  So much bleeding and very loose watery stools, lots of pain and she fainted twice.
> 
> Went to GP this morning.  He said inflammation and prescribed 30mg prednisolone!  She is scared to take it because GI hasn't prescribed.  She called and left a message with Secretary and no reply.  I e-mailed and no reply!  So bloody frustrating!!??  What do you all think?
> 
> I think if she takes it and it clears up inflammation (if it is inflammation) then Oxford will not think it was there in the first place.  If she doesn't take it she could end up even worse!  GRRRRRR
> 
> On a better note, GP has made an appointment with me on Thursday to discuss letter regarding referring her to another specialist!!!  At least he is going to talk to me and listen to what's going on properly.


It couldn't hurt to try it and see if it helps, right? I mean this would verify that something is wrong too! Keep us posted and hugs to poor Jaime!!!:hug:


----------



## Niks

The trouble is it worked before and then when they scoped her and couldn't find inflammation after the first time and being on Pred, they assumed that there wasn't any!


----------



## 723crossroads

Niks said:


> The trouble is it worked before and then when they scoped her and couldn't find inflammation after the first time and being on Pred, they assumed that there wasn't any!


Maybe it was higher up where the scope doesn't reach. Did they ever think of that. I have two words for those idiots, pill cam!:ylol2:


----------



## kimmidwife

Niks,
That is such a hard call. I am really not sure what the best plan of action is. But I do agree that the GI needs to make this call. Good luck and keep us posted!


----------



## Mehita

Is she due for another scope soon?


----------



## Niks

No, because they don't think she has any inflammation!  x


----------



## Mehita

Can the GP talk to the GI?


----------



## Niks

I think I'll keep calling tomorrow until I get to talk to someone.  Was at work today!  Otherwise will ask GP to call.


----------



## upsetmom

l hate it when they don't call back...:voodoo::voodoo::voodoo:

I think its up to the GI ....but if she gets worse overnight l'd take her to the hospital.
I know you haven't had much luck there but at least they can keep an eye on her.

Poor girl she really needs a break..:ghug:


----------



## Catherine

Niks can you get bloods test done before she starts taking it.  You need at least the markers done for inflammation, also if possible any other bloods tests your new specialist is likely to want.


----------



## Mehita

Good idea, Catherine ^^^


----------



## Dexky

I just don't understand how they can overlook all the blood!  If she just complained of some niggling pain and they couldn't find an answer, it'd be one thing, but this girl bleeds and vomits and passes out!!  I can't believe this is still going on!!


----------



## Mylittlesunshine

So sorry here this NIKs 
That you and your poor girl our 
Still fighting for answers x 
Hugs


----------



## Niks

Spoke to GI in Oxford this morning, he is ringing GP, wants bloods done and possibly  Sigmoidoscopy, but needs to talk to other GI involved.  

Doesn't want her to start steroids.   Also doesn't want her to take iron supplements, will arrange an iron infusion instead. (He hadn't received blood results from Swindon!)

He agrees she needs referring urgently to another specialist regarding her fainting episodes.

He is absolutely convinced there is no inflammation!  He is sure that it is down to previous constipation.  

I don't think they'll find anything in bloodwork or sigmoioscopy as they never have before!  The only time any inflammation was seen was initially on colonoscopy before any steroids given.  'SIGH'


----------



## Mylittlesunshine

Hi niks 
I'm just wondering does Jamie have probs
With her blood pressure cos that cause 
Her to faint. 
Also has she ever seen a heart doctor? 
Cos when you have a problem with heart 
Rate it can cause fainting problems. 
Just trying to help I'm sure this isn't
Case but its worth checking .


----------



## Niks

Her BP is often very low and they have had to take it manually before because it is too low to read on the normal machine.  

When she was on a machine in A&E a couple of weekends back her heart rate was really irregular, even though she was just lying there!  We are meeting with her GP about the letter I wrote about concerns, so hopefully will get another referral.

Secretary has called J back and requested bloods - again!  And making her appointment for Gastro Clinic next Tuesday.  She has said Doctor will call her too, we are still waiting!


----------



## Mylittlesunshine

I have probs with my heart rate and blood pressure
And this causes me to faint/ pass out/ collapse
Ect. It might be worth asking to have a heart 
Doctor to check her out and then u can tick
Off the list. Maybe it might be two different
Causes for all this has anyone mentioned about 
This. I do hope u get sorted x


----------



## Niks

MLS - maybe pointing this way.  I just think after so long of being so poorly, everything is under a lot of stress.  But yes I will push for her to see Cardio first I think.  Thank you!

Are the causes of your heart and BP problems related to your other health issues?


----------



## Mylittlesunshine

The heart and the blood pressure are
Related, but as far as I know they didn't 
Cause the cancer but the cancer has put 
Pressure on my body and bp. 
What happens with me is I have fast 
Heart rate which causes bad bp and then 
I pass out . If I was you I would get them to
Do cardio.
Niks there are some tests to check if 
She is fairing cos if bp or heart rate
First one is tilt test which checks to see if 
You pass out due to your blood pressure 
Dropping. Also 24 hr bp monitoring which 
Takes your bp every 15 mins with 
Bp monitor on for 24hr and also they 
Can put a heart monitor for the same 
And will take 24 hr monitor of heart. 
It's worth asking for theses tests. 
Hope this helps Hun. 
If there is anything else I can do just ask.


----------



## Niks

:ghug::ghug::ghug: Thank you!


----------



## Johnnysmom

Johnny got checked for a prolonged QT.  Fainting is one of the main symptoms.  The cardiologist who checked him out said fainting can be nothing but should always be checked out. 

Hope it ends up being nothing.  (((Hugs))))


----------



## 723crossroads

What is a prolonger QT? Forgive my ignorance.


----------



## Mylittlesunshine

Your welcome NiKs anytime Hun
It's worth checking out . X x


----------



## fosterschick

Bless u , its a right dilemma u want ur girl right and pain free but still want to get to t bottom of it , but if I am honest nhs don't seam to want to diagnose early problems just fix the emergencies , so I would get ur girl well and document all this n take it to solicitor for medical malpractice ? ? Xx god bless u its hard going through this but to watch ur baby go through it my heart is with u x


----------



## littlemissh

On an ECG-electrocardiogram (heart trace), the pattern follows a PQRST pattern, looking at the electrical activity as it goes through the heart causing the heart to contact at the right times in the right place. 
First is the P wave, then QRS wave, then T wave. A prolonged QT is the distance (from which you can work out the time) between the beginning of the q wave to the T wave.


----------



## 723crossroads

Thanks littlemish!!! Had no idea!


----------



## Johnnysmom

Well done littlemissh!!!

Johhny had one show up on an EKG in the ER once.  We had to see a cardiologist, but he checked out fine. 

There is a warning with anti-nausea meds like zofran that it can cause a prolonged QT.  If you google it, you might see if it fits Jamie or not.  Our GI said some antibiotics with the zofran can make it worse.  I believe it is just a side effect and will stop once you discontinue the drug but the prolong QT itself is very dangerous.  

Sorry NIks, I know we are all grasping at straws to try and help you figure this out for Jaime.  Maybe something will stick and she can start feeling better.  ((((Hugs)))))


----------



## Niks

Thanks Johnnysmom.  Have been doing loads of research.  With her Gastro problems I think if it isn't inflammatory it could be EGID.  I am not sure if she has had biopsies but will definitely be checking with Gastro next week!


----------



## xX_LittleMissValentine_Xx

I think irregular heart rate could be linked to fainting??

My sister has irregular heart rate which was picked up after she felt faint at work (at a hospital). But we have never taken this up with another doctor to know if it is linked to her other symptoms which are dizziness and fainting.


----------



## Catherine

Sarah had heart test due to fainting but her were requested by neuro.


----------



## Thunderstorm

I've spent hours this evening reading through every single post in this thread. My god, she has been through a lot. She sounds a hell of a lot stronger than I would be!My thoughts are with you both and I hope you find some answers soon. 

Have you looked into postural tachycardia syndrome as a cause for the fainting? I had it as a result of a (non-gi) medicine, but before they knew the cause, the cardiologist talked about the autonomic nervous system possibly being a little out of sync. I have a CFS diagnosis and he was willing to put that down as a cause, so I could certainly understand a period of prolonged ill-health causing problems in that respect..

It's super easy to test at home, simply take the resting pulse (after lying down for at least 5 mins) and then get her to stand up and see how much it rises over the next 5 mins. Mine was shooting up to 150 within a minute of standing!. I think a rise of over 30 beats or over 120 is considered a sign of POTS. Please look into it!


----------



## dannysmom

Hi Nik - just checking if Jamie's blood amylase or lipase levels have been tested?  Mostly likely have as it is a pretty standard test for pancreatitis.


----------



## kimmidwife

Thunderstorm,
That is a thought she could have POTS! Niks,
I can't believe they want to do a sigmoidoscopy which doesnt even see as much as a colonoscopy. They need to look further up the gut. Did you ask about a pill cam? If they said no what was their excuse?

Here is a little article explains the difference between sigmoidoscopy and colonoscopy for those that don't know:

http://digestive.niddk.nih.gov/ddiseases/pubs/sigmoidoscopy/


----------



## my little penguin

I dont understand the flex sig either- why not a full colonscopy -???


----------



## Niks

Thunderstorm - blimey!  This is one long thread to read right through!!

No one has really looked into any cardio problems as yet!  Thank you for this.  To be honest, with what has gone on with her over the last 14 months, it doesn't surprise me!  :ybatty:

We are off to see GP together this morning,  I hope he can get her referred quickly.  

Holly - did they work out what was going on with your sister??

Kim and MLP - I questioned this!  She has only ever had one full colonoscopy and it DID show inflammation and yet every other scope has just been sigmoidoscopy, which have always shown nothing.  I just don't understand why they would do this.  He didn't really answer me yesterday and as he didn't call Jaime yesterday after all I don't even know if they are going to do it!

Dannysmom, really not sure!  GI has requested GP get bloods done today.  Will get him to check this too 

Thank you everyone!  Jaime didn't feel quite so bad yesterday, however has woken up in agony this morning, feeling as bad as ever with a raised rash all over her face.  :eek2:  She has had rashes before, but was thought last time was because of steroids.  I think she is just getting really run down.

I do want to discuss B12 with GP too, the last time her levels got low she had really horrible symptoms


----------



## CarolinAlaska

How frustrating, Niks!  I'm glad the GP is at least willing to try treating again with pred.  If it works, who cares if those freakin GI docs ever see it.  You can't leave your daughter in the state she is in waiting for them to come around.  For goodness sakes!  You are living in the Twilight Zone and everything is so upsidedown!  I hope you can hear from your GI soon!  If not, have her go for it!


----------



## Niks

Carol - she hasn't taken any Pred.  I really think it would help as it has before, but then when she's scoped and there's nothing, they won't accept that it may have been there but steroids have cleared up!!  :ybatty:  So for now, she has them but not taking them xx


----------



## xX_LittleMissValentine_Xx

No they haven't worked out what is going on with her. When she had that fainting spell at work they sent her down to A&E which is where they said her heart rate was irregular. This was back in February and we said to her to mention it to her GP but I don't think she has. She said at her GP surgery there is a sign which asks to come for one problem at a time which is ridiculous! So she hasn't felt like she can bring it up...

But her problems aren't really impacting her day to day at the moment.


----------



## Sascot

Hope the GP manages to help!  It's good if you can get at least one medical professional who listens to you!


----------



## Niks

Well! 

GP is so sympathetic I almost feel sorry for HIM!

He has redone all bloods.  He really does thing that all her problems stem back to everything that has happened over the last year.  He said her heart rate is almost certainly because she has been so poorly.  Her blood pressure is making her faint.  The way to treat low BP is treating the cause!!!

He is reluctant to refer anywhere else as he said her problems are gastro.  He does not believe that she has IBS.  He said you do not get bleeding with IBS.  Well we know that!!!  

Oh and GI did not call GP yesterday as he promised!  GRRRR. 

I guess we wait to see what Oxford say on Tuesday, but we seem to be chasing our tails.  :ybatty::ybatty::ybatty:


----------



## 723crossroads

Niks said:


> Well!
> 
> GP is so sympathetic I almost feel sorry for HIM!
> 
> He has redone all bloods.  He really does thing that all her problems stem back to everything that has happened over the last year.  He said her heart rate is almost certainly because she has been so poorly.  Her blood pressure is making her faint.  The way to treat low BP is treating the cause!!!
> 
> He is reluctant to refer anywhere else as he said her problems are gastro.  He does not believe that she has IBS.  He said you do not get bleeding with IBS.  Well we know that!!!
> 
> Oh and GI did not call GP yesterday as he promised!  GRRRR.
> 
> I guess we wait to see what Oxford say on Tuesday, but we seem to be chasing our tails.  :ybatty::ybatty::ybatty:


I have a huge feeling he will give a pillcam and find a stricture....


----------



## CarolinAlaska

Didn't J have a test that showed the pillcam wouldn't be safe?

I understand about wanting to wait for the steroids, but blimey, I also understand why your GP wants to help you move forward!


----------



## Niks

Carol - no.  But because the barium meal didn't go anywhere, this is way back they didn't think it would be possible.  Now however they don't think it is worth doing because her MRE was clear in March (after 6 months of steroids)  Which is why I am really reluctant for her to go on steroids again.

Early on CT and barium showed inflammation as did her colonoscopy.  

It is just getting exhausting now!  Poor bugger.  Am expecting bloods to be normal, except ferritin.  So probably Oxford won't think there is any more to do.  Secretary called back with appoint for Tuesday, late afternoon.

If they want to do Sigmoidoscopy, I really will push for Colonoscopy, but not even holding out for that!


----------



## Dexky

That's awful to be in a situation where you are afraid to give her something that may help because it might mask something they don't believe exists!  Hang in there Niks you must be a wreck!!


----------



## xX_LittleMissValentine_Xx

At least you know your GP is on your side. I bet it still feels pretty hopeless though. 
I haven't read through this whole thread so forgive me for asking what I'm sure has been said. But why is it they haven't diagnosed IBD? Was it clear scopes?


----------



## Niks

Holly, her MRE in March was clear.  But like I said, other tests have shown inflammation and she had been on Prednisolone since October.

Also because her most recent problems have been dysmotility, they think this is her problem.  She didn't start like this though.  She initially presented with bloody mucousy diarrhea.  Her first (and only) full colonoscopy was done at a private hospital and for some reason the inflammation on this scope is not being taken seriously!


----------



## 723crossroads

I really believe that something will become evident to him very soon and you will finally have a true diagnosis and be treated as such. I am always hoping and praying for that for Jaime! Noone deserves a life like that!:hug:


----------



## Niks

Hmmm.  Her BM's are now almost black and really sticky!  I know too much information, but very hard to clean from toilet bowl!  

She did take a couple of days of iron supplements earlier this week, until GI told her not to, so wondering if that is the cause??


----------



## 723crossroads

Niks said:


> Hmmm.  Her BM's are now almost black and really sticky!  I know too much information, but very hard to clean from toilet bowl!
> 
> She did take a couple of days of iron supplements earlier this week, until GI told her not to, so wondering if that is the cause??


It could be from the iron, it sure did that to me when I took it. It constipated me too. Pour bleach in the toilet and let it sit, that will do the trick!!!:ylol2:


----------



## DustyKat

Iron will do that Niks and it is a problem when you are trying to differentiate from maelena (bloody stools). If there was not a horrendously foul smell associated with it, aside from normal stinky poo :lol:, then it is the iron. 

Since severe constipation can cause low blood pressure and dizziness is this what they are saying it is all tying back to? 

Dusty. xxx


----------



## Niks

Thanks Dusty.  That's  such a relief!  I wasn't sure she only took one a day instead of two (misread the dosage!) for 5 days and stopped on Monday.  I think you're right.

Yes, but with new meds she is now going around 6 times a day, so constipation is no longer a problem, thank goodness!!

xx


----------



## Niks

So........  J collapsed actually at clinic today.  :facepalm:

BUT certainly got their attention.  People running round.  Put her in a quiet room.  She was in agony, looked dreadful, and ended up in tears 3 times.

She is having a full colonoscopy and endoscopy before the end of next week.  Just waiting for date.  They wanted to admit her but it just made her cry more.  (We were supposed to be going away for a few days next week, as both booked holiday - best laid plans and all that!) 

We were there for 2 hours.  The GI said 'we couldn't let this go on any longer'!  Why did it have to get to the point where she collapsed right in front of them to be taken seriously! :ybatty::ybatty:   But hey...


----------



## 723crossroads

I'm so sorry Niks for you and Jaime. You are right, this neer should've heppened. Never should have taken this for them to pay attention. But now she will get action. Oh I hope and pray they can treat her now with something that works and she doesn't have t go through this anymore.:hug::ghug::Karl: Get well soon Jaime!!!


----------



## xmdmom

Glad she is finally getting an endoscopy and her doctor is taking it more seriously but really sorry that she has felt so poorly for so long without any answers.


----------



## xX_LittleMissValentine_Xx

Wow, I can't believe it took that much to get their attention! Maybe they didn't believe you. Anyway, at least they are taking you seriously now and lets hope you finally get some answers! x x


----------



## Niks

I just don't think they believed the pain levels.  Everytime they have seen her she hasn't been too bad.  Even when she's been admitted, by the time a GI arrives, she is more comfortable!!  But yes, hopefully now they will get her tested properly.

xx


----------



## Dexky

I really hope this results in solid answers and a plan Niks!!  I hate to say it but I'm glad it happened!


----------



## xX_LittleMissValentine_Xx

I also think its easy to have a short memory when it comes to pain, in my experience. When you are feeling unwell you think of all the things you want to tell the doctor about. Then you feel a bit better you don't think of it. I think its probably impossible for a doctor to get an accurate idea of how you are feeling. And then what goes in your notes is different as well. 

I said to my GI a couple of weeks ago that I get twinges when he asked about my peri anal symptoms. Then the letter says "No perianal symptoms". 

Even if you were to write down every time you felt anything and gave it to them, they would probably think you are worse than you really are because they are comparing you to their other patients. 

Sorry I've gone off on a tangent!!


----------



## Niks

Am glad too now Dex, although at the time it was just horrible , I was nearly crying too. She was so upset  x


----------



## 723crossroads

Any new news Niks???


----------



## Sascot

Hope things are a bit better and you are getting better treatment!


----------



## Niks

She's back in hospital. 

Fuming! She's just called me in tears. They're NOT doing colonoscopy because it will be 'too painful'! FFS!

I am at work and can't get there til 4 .

They are getting pain team to see her and send her home!!! WHAT?!  Has anyone else heard anything like it??

She doesn't think any other tests being set up!! Can't wait to get there later 

:mad2:


----------



## xX_LittleMissValentine_Xx

Is she able to ask to see her GI while she is in there? He might be able to influence something??


----------



## Dexky

FFS indeed Niks!!  There's nothing left to say!  I hope you go in there and start flipping gurneys and tables!!  Empty ones of course!


----------



## fosterschick

This is so NHS at t moment , seams like they are almost avoiding diagnosing IBD until u explode , I'm thinking channel 4 mite be interested in these situation lol maybe that would move t NHS , I'm having similar situation , they won't trial a crohn's drug on me instead they went back 6 years in my note and are now treating me for constipation because they know I definatly had that ( I have had dia for last three yrs )  !! Crazy , I soo feel for u and ur baby hugs to u all xx


----------



## Stephyjane

What an unbelievable situation you are in. You must be ready to explode.:ybatty:
If the scopes are going to be too painful for J why don't they give her a general, thats what the do in paediatrics. 
I really really feel for you both. There is absolutely no consistency within the NHS, do they even communicate with each other.
I'll keep everything crossed for you that J does get her scopes and you both get some answers. xx


----------



## 723crossroads

Niks said:


> She's back in hospital.
> 
> Fuming! She's just called me in tears. They're NOT doing colonoscopy because it will be 'too painful'! FFS!
> 
> I am at work and can't get there til 4 .
> 
> They are getting pain team to see her and send her home!!! WHAT?!  Has anyone else heard anything like it??
> 
> She doesn't think any other tests being set up!! Can't wait to get there later
> 
> :mad2:


I just don't understand it Niks! Why can't they put her to sleep for the scopes? I am shocked.


----------



## Ands

I was going to say the same.  I know a general isn't nice but it is a means to an end, hopefully.  The NHS has a lot to answer to, this isn't god enough.  Hope you are in there now causing a fuss, only ever had to do this once, but, when I said I wanted to make a formal complaint, attitudes changed and suddenly everyone wanted to talk to me!

Thinking of you both. Xxx


----------



## upsetmom

How's everything going ?


----------



## Niks

Thank you everyone!

Just got home.  They are doing Flexi Sig in  the morning...  They won't do full colonoscopy under general!  I explained that I am not happy with Sigmoid because nothing has ever shown on one before, but has on colonoscopy.  

He told me that the inflammation that initially showed on colonoscopy was near the bottom where sigmoid would see if it is back.  This is generally where UC starts!  *I did not know this before*!

Anyway.  Jaime much better today.  She looks pretty rough, but didn't sleep last night as was in agony all night.

Top GI been talking to her GP today about a pain management plan. 

So, am not convinced there will be anything on Flexi Sig, but hopefully they can come up with a plan to try and help her manage the pain a little better!


----------



## Farmwife

HUGS to you and Jamie.


----------



## ChampsMom

Oh Niks...


Hugs!!!!!!!!!!!!!   

I *pray* they come up with something better than just pain management!!!  How about a REAL diagnoses of what is causing her to be so sick... Shame on them for  not taking a more aggressive approach... My heart goes out to you and her!


----------



## 723crossroads

We all need to say a prayer about this together, those who believe! OK?:hug:


----------



## DustyKat

Frigging hell Niks! :ghug: 

Just catching up hun. When I read about Jaime collapsing at the clinic, as much as I hate the thought of that happening to her I was also thinking...thank bloody christ for that! Now they may actually do something of substance! 

But now! Ugh!  Can someone please explain to me why the UK seems to be the only country I can think of off the top of my head that does NOT do scopes under twilight sedation or a GA???!!! I'm sorry but what a piss weak excuse for not doing a full scope! Wouldn't too much pain be a very good reason to in fact do one! GRRRRRRRRRRRR. 

I so feel for you both Niks and am hoping more than anything that the docs get their arse into gear and give you both solid answers and lasting relief. :heart: 

Dusty. xxx


----------



## littlemissh

In the UK some doctors seem to be too worried about what the bed managers may say...heaven forbid that someone may have to stay in after a GA and use up a precious bed.

Most GIs I have come across will happily sedate very heavily as it makes their life easier. My first colonoscopy I asked for no sedation so I could see what was going on and also go back to work that day/drive...never again. My GI kept asking me why I didn't opt for sedation as he much prefers to do them with sedation as easier and better views etc.
I now have max sedation cos it hurt - I am obviously a wimp!


----------



## Niks

Jaime had scope today and was already in the discharge lounge when I went to pick her up. Flexi sig showed 'constipation'!  Well...  I could have told them that.  I guess from that statement they could not see anything..  So angry I could cry.  I just do not know how to get these people to do something to help her!

They have started her on Pregabalin for pain...  starting at 50mg upping to 150mg over the next 10 days.

That pretty much is it!  :ymad::ymad::ymad:


----------



## xX_LittleMissValentine_Xx

Maybe its time to threaten an official complaint as Ands says? 

You are just being passed from person to person, no one is working as a team, talking to people who have already written plans in her notes. They probably aren't even reading her notes. This happened to me when I was in hospital. They are not doing enough to find the CAUSE of this problem and too much time passes in-between actions. How much longer does your poor girl have to go through this?

How is she niks? I worry about how she can possibly cope with this. My sister was self harming when she was going through her problems with finding diagnosis and getting doctors to take her seriously.


----------



## Niks

Holly, I did that before at our local hospital.  I would never go back there either.  I just don't know what to do...  I am going to e-mail her GI that she saw at clinic.   Unfortunately she didn't see him during her stay this time.

I am going to e-mail and ask what they are going to do.  Whether I get a reply is another matter!   She still hasn't had iron infusion which they said she would have and her B12 levels are still dropping :eek2:

They think they have a diagnosis!  Coeliac disease and IBS with Visceral Hypersensitivity!  

AAAARRRRRGGGGGGHHHHHHH

J copes well when she feels okay, (just wish that was more often) she is starting to feel like they don't care.   'There are people dying there Mum, why would they care about me?  If they think I have IBS then they must think I'm putting it on'  is exactly what she thinks!


----------



## 723crossroads

I am still just amazed at the incompetance of those Dr.s there. I mean, why in God's name are they not at least doing some more tests? I will never understand. I would seriously get a lawyer and see if there is any recourse to get them to do something besides just giving her painmeds.


----------



## QueenGothel

I would be writing a letter to the department head.  The squeaky wheel always gets the grease. I would also be writing all of this down so you can have it at your fingertips for future reference if they want the info you will have it already to go. Sorry it has been such a long road for her!


----------



## 723crossroads

Queen Gothel has the better idea. I meant more of an advocate to try and get things done. I'm sure you are tired of all of us telling you what to do, so I am just going to pray and hope the very best comes out of this somehow,:hug:


----------



## Kimberly27

This SEEMS so textbook: Do a colonoscopy, endoscopy, and pill cam!  What is going on with those doctors!  I'm totally befuddled by their diagnosing procedures.  

How much more can your poor girl take?

Hugs to you both. 

Kimberly


----------



## Niks

Thanks all.. 

Mary, I am writing everything down!  It is amazing what you forget, I got a lot of it from posts on here from the earlier days!

She is struggling at the moment with chest pain.  I think it's reflux or something similar.  She has not really had this before but earlier did have a lot of burping.  I just really feel for her, if it's not one thing it's another.


----------



## Trysha

Niks
Have you heard of St Marks Hospital in London.?
They specialise in Diseases of the Colon and Rectum., and are very good at it.
As far as I am concerned it is the only place for Crohns   UC and IBDs. 
I am quite shocked at the Oxford Group, presumably you were at the Radcliffe.,especially their seeming lack of coordination among themselves and also their diagnostic criteria..
Feel better soon
Hugs and best wishes
Trysha


----------



## 723crossroads

So sad! sorry Niks. I know as a mom how bad it hurts to see them hurting.:hug:


----------



## DustyKat

I have a very close and dear friend that was referred onto St Marks Niks. I would ask that your file notes be sent to them for consideration. It does not mean that you will be seen but it would well be worth a try. :ghug: 

Dusty. xxx


----------



## littlemissh

I had an inpatient transfer to St Marks a couple of months ago by my gastro from my local hospital when crohns had made me really unwell. They have all the tests there from pill cam to double balloon endoscopy.
It was all set up for me on arrival to the ward - dummy pill cam, ct, DBE . They even wanted to rpt all the tests done by my gastro- colonoscopy, OGD etc.
I was then seen by their lead IBD consultant Dr Aisla Hart who is the most lovely and thorough doctor. She listened to what I was worried about / wanted and we reached a treatment and management plan between us.

I am lucky to have a really good consultant  locally who asked them to see me and give their opinion as I am 'complex' (oh joy!).
I would say as they cannot control her symptoms J is complex so perhaps a referral there may be considered?


----------



## Niks

Thank you all!  I will look into contacting them myself and ask at her next appointment for them to refer her.  

Her pain has been really bad again today.  How can this be just IBS.  She is as white as a ghost :eek2:


----------



## Catherine

Niks, please find below the guidelines for a diagnosis to irritable bowel syndrome, I think your specialist needs to explain to you and Jamie why she has so many red flag symptoms.

http://www.mayoclinic.com/health/irritable-bowel-syndrome/DS00106/DSECTION=tests-and-diagnosis


----------



## kimmidwife

Niks,
Just want to send a hug to you both. A transfer to that St. marks sounds like it may be just the thing!!! Can you call your doctor tomorrow and demand a transfer?


----------



## Niks

Catherine - thank you for link.  It is crazy that they are fobbing us off with IBS.  

Kim - we are heading off to GP again this morning as she attempted to go to work but they refused to let her stay as she is still 'too unwell for work'.   

She is between a rock and a hard place.  She doesn't want to sit at home on her own in pain, and now her work won't let her go in.  :ybatty: 

She doesn't look great.  She is white, pretty wobbly on her feet and can't straighten up because  of pain.  So I can't blame them, but if there is nothing wrong with her then what on earth is she supposed to do?


----------



## xX_LittleMissValentine_Xx

Maybe taking a bit of time out to rest will help her a little?

At least her work can see how ill she is. My work didn't believe me, even when I was admitted to hospital! Doctors also take you more seriously when you talk about how your illness is impacting your life. So the fact work aren't letting her go in might work in your favour. I know your GP is already on your side though.


----------



## Sascot

Sorry I missed so much while away.  I can totally understand how you feel, when I was struggling with my daughter's pain they were so pompous and yes, they do seem to think they are "putting it on" most of the time.  I remember my daughter coming out of the shower in the hospital and they said "well, she can walk around alright then"!!!  It was me that insisted they do something (which they weren't) and thankfully one nice doc said they would do the camera laparoscopicly and he took her appendix out "just in case". Had he not done that, we would probably be exactly where you are - in agony but with the "sorry we can't do anything else". Our next port of call was the psychologist to help her "deal with her pain" - never been so frustrated.  Just fix the pain!
I truly cannot understand how they can leave Jaime so unwell.  You would think quality of life is more important than not putting people through more tests, but that's the NHS mentality unfortunately.  Keep trying, you just need one doctor that will go out of his way to fix things.


----------



## Niks

GP not keen to refer to another hospital as he is sure that they are trying to get to the bottom of things at Oxford!  Hmmmm.  Jaime was pretty tearful in surgery and said to him that she just wants to feel well enough to get on with her life.  

He has given her Morphine patches, (she did discuss patches with one of the GI's when she was admitted last time).  I know this is not the answer, but hopefully she can at least get through the next four weeks until her next appointment.  

She has been walking like an elderly person, really hunched over, and very slow.  It is painful just watching her.  She is scared that she is going to end up not being able to move around at all!  At 19 this is just crazy.

She is hoping that because the patches are slow release and continuous, day and night, she wont get the point of absolute agony.  Here's hoping.  The downside of course is they can be constipating!  She is prepared to take the risk and take laxatives with the patches.


----------



## happy

Hi Niks,
I a so sorry that you and your daughter are struggling so much with these problems. I just wanted to let you know that one side effect of the narcotics can be a "false sense of well-being". While it would be great for your daughter to enjoy that feeling for at least one day, it is important to have objective measures, like keeping a journal with a pain scale, food intake, bowel movements and activity level to help both of you to decide how she is doing. She may just feel "better" on the meds, but some of the other warning symptoms could still be happening. 

May she get some relief of her symptoms soon.


----------



## Niks

Thank you Happy.  She has just had such a long long time of feeling so poorly, vomiting, pain, passing out etc she just wants to feel a little better.

She is going to use the patches up until a few days before her next appointment and then take it off and see how she feels!  She also doesn't want them to think she is doing much better if really she isn't.  

She says she is scared that she will end up in a wheelchair!  She is really struggling to get about because of her acute pain.


----------



## Clash

Niks, I am so sorry for all you and your daughter are going through. I had hoped that she would be well on her way to feeling better by now and it breaks my heart that she is having to go through so much.

You might want to keep a daily video diary of her trials, pain and inability to carry out normal day activities. I know it sounds a bit extreme but having a visual proof to the struggles she faces could only help in the quest to find answers. I know that is also a lot to ask of a teenager but if you had an ongoing cycle of these videos to record the instances of her worst days then maybe it would help.

That idea may be out there and grasping at straws, it just pains me so to know of all y'all have been through. I do hope she gets some answers and soon so she can start feeling better.


----------



## Bubbly

Cant believe what i have been reading, what you and your daughter have been going through over the last month or so. We have been away for a while and i havent been on the site for a while, and i thought i would catch up with your thread.....

I just wanted to send hugs your way for you both, and i really hope she gets a referal, think she needs to be seen with a fresh pair of eyes!

You mention the being  unable to stand up straight, this happens to my son when he is constipated, shuffles along, says it just hurts to stand up straight, he is on movicol which is hit and miss at the moment.

Thinking of you both xx


----------



## Niks

It's a thought Clash!  Thank you xx


----------



## upsetmom

:ghug:.My heart goes out to both of you.


----------



## DustyKat

What patches is she on Niks? The weekly or every 3 days and what strength? 

Dusty. xxx


----------



## kimmidwife

Niks,
Please make sure she is careful with the morphine patches. (Another name for morphine patch is fentanyl) they can be addictive.
Please talk with then further about a transfer. The root of her problems need to be figured out.

http://www.medicinenet.com/fentanyl-transdermal/article.htm
http://www.mayoclinic.com/health/drug-information/DR601815


----------



## Niks

Dusty she's on BuTrans 5. Buprenorphine. It's the lowest dose, he said she can use 2 at a time but has started on one.  They are weekly patches.  He also said she can still use oramorph and tramadol, but is hoping that she will not need to use these as much.

She has still had a lot of pain, but managed with just tramadol today.  She is moving a little better than over the weekend!

Kim - thank you.  I am trying!  It is a nightmare.  I just can't stand seeing her in so much pain.  This is the first day she hasn't passed out in weeks, so really hoping it will help for a bit.


----------



## kimmidwife

I am happy she is having some relief. I am worry for her so much. I wish there was more I could do.


----------



## DustyKat

I have to head off Niks so just a couple of things re the patches: 

They will not work straight away. The mechanism they use is to build up a reservoir under the skin so for a weekly patch it can take up to three days to become fully therapeutic with the three day patches being about half that. The same is true when ceased, it will take that amount of time to completely clear your system. 

If you are still experiencing warm weather or Jaime likes hot showers it might be an idea to use a secondary dressing to ensure it stays on, just a tape like hypafix or something similar. And lastly be sure and date the patch/secondary dressing when you put it on as it is not hard to lose track of time. 

Good luck!

Dusty. xxx

ETA. Just saw your post. Good to hear she is starting to get some relief.


----------



## Niks

Thanks Dusty.  Hopefully the next few days will get easier.

We are away for a few days so really hoping so!

x


----------



## Niks

We are in Cornwall for a few days.  OMG it really shows how much she has deteriorated. She can't cope with walking for more than a few mins. Steps are a nightmare. Just being out and people looking at her is really getting to her. She's trying to do things for me, I feel so bad, I guess she would have been better at home.


----------



## Farmwife

Poor girl.
Can you take her to a more private area and has some quiet time.
Do you have a scenic area near by? Maybe a picnic? Even a movie or a café? 
 Something to let her rest but lift her spirits a bit.


----------



## Niks

We are doing that. Just finding quiet spots. The beach is stunning. I just didn't realise quite how bad things were.. She can't hide it, I guess that's all. She doesn't want to go home. Hopefully her pain will settle a little x


----------



## xX_LittleMissValentine_Xx

Hope you can have a relaxing change of scenery despite the pain! x


----------



## Niks

Thank you. We are certainly trying! Just wish I could swap places xx


----------



## 723crossroads

Niks said:


> Thank you. We are certainly trying! Just wish I could swap places xx


You are such a good and caring Mom! Bless you Niks!
My daughter is going to get blood done tmro to see if her hepatitis C is becoming active or not. It is very scary to me. Once it is active, you have ten yrs. to live unless you get those horrid Interferon treatments. They can save you or kill you. I need some support now even imagining about this. She is only 35. Drugs....did it.


----------



## upsetmom

723crossroads said:


> You are such a good and caring Mom! Bless you Niks!
> My daughter is going to get blood done tmro to see if her hepatitis C is becoming active or not. It is very scary to me. Once it is active, you have ten yrs. to live unless you get those horrid Interferon treatments. They can save you or kill you. I need some support now even imagining about this. She is only 35. Drugs....did it.


:ghug::ghug::ghug:..I'm sorry you and your daughter are going through so much.


----------



## CarolinAlaska

Niks - I am just flabbergasted.  I hope your real GI who said "This can't keep going on like this" will remember last visit and the plans he had and will continue with them.  If he feels his hands are tied because the other docs got in the way, will you please ask him for a referral to St Marks?  This is just wrong and something is rotten in NHS to let this go on for so long.  Would any of these doctors treat their own child this way?


----------



## Niks

So sorry you're going through this with your girl Teresa, really hope her blood tests are ok!! (((HUGS)))

Thanks Carol. I hope so to. We see him on 19th.  I will be ringing when we get home! We're off today to look for a quaint beach and Cornish tea shop! Just not much walking


----------



## 723crossroads

I sure hope you have a wonderful relaxing time and enjoy....:hug:


----------



## xX_LittleMissValentine_Xx

Yumm... Hope you can find yourselves some lovely cream teas! I have had quite a few this summer actually.


----------



## kimmidwife

Niks,
I am thinking of you guys and praying Jaime can have a little fun and so relief!


----------



## CarolinAlaska

As in the 19th of September?  Oh, I thought it was this month... .  Are you giving your dear girl some probiotics?  I've heard good reports on another forum of one called Culturelle being a Godsend for some kids on another board.  I don't know if you even have that in your country...  I was thinking of and praying for dear Jaime this morning in bed and had to get up and see if you'd posted any more updates.  I hope she is improving and can enjoy her holiday.


----------



## kiik

Hi Niks, I've been following this thread and have never commented, but I don't think I've seen this suggested yet. I've never personally tried MMJ, but in Jaime's case it might help with the pain. I've read of a lot of success stories, on here and on reddit.com/r/crohnsdisease. Just a thought - I completely understand if you're opposed to it!

On another note, I'm so sorry Jaime is going through all of this. I'm 20 and had to have two surgeries this summer and a few weeks in hospital and I could barely deal with it. I can't even imagine how strong she is to keep coping this long and try to keep working! Don't know if she feels like chatting, but she can always PM me on here, or I could give her my email.


----------



## Niks

Okay - we're back.  She was violently sick yesterday :eek2:.  She felt so poorly that she was in bed by 7pm and slept through until 8 this morning.  She is struggling with walking as it seems to exasperate her abdo pain.  But the vomiting yesterday was not expected as she really has been much better with that. She's been sick today too 4 times but not like yesterday.

When we got back there was a message on the answer phone for her to go back to clinic next Tuesday!  Maybe from my e-mail, but out of the blue.

Carol, she doesn't have probiotics, but maybe it is worth a try.  She can't really get any worse!

Kiik - thank you!  I will ask her.  I am not opposed to anything that would help her, but I know she is.  She hates even cigarette smoking..

So I guess we'll see how Tuesday goes.  Not really expecting much!


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## kimmidwife

Niks,
When you go Tuesday push them on the transfer to St. Marks! I read up about it it sounds like a really good place!


----------



## Stephyjane

Is there any chance she may have picked up a bug which has caused the vomiting again? I know it's probably not but.......? So awful she is having to live like this. I hope you have a better appt on Tues, is it at Oxford? 
I wish there was some better advice I could give u but as we are from the uk and a NHS user as well I Know  how limited we are when it comes to saying what we want. 
Have you thought about speaking to your local mp to see if they can pull done strings or local paper. Take care Steph x


----------



## DustyKat

I'm glad you were able to get away for a few days Niks but so, so sorry that Jaime is still suffering, and you too. :ghug: :Karl: :ghug:

Do you have a photo of Jaime taken before she became ill and one now? If so take them to the clinic on Tuesday and ask them to explain to you why the girl in the pictures has changed so much the last (however many) months. 

Thinking of you, 
Dusty. xxx


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## 723crossroads

Niks said:


> Okay - we're back.  She was violently sick yesterday :eek2:.  She felt so poorly that she was in bed by 7pm and slept through until 8 this morning.  She is struggling with walking as it seems to exasperate her abdo pain.  But the vomiting yesterday was not expected as she really has been much better with that. She's been sick today too 4 times but not like yesterday.
> 
> When we got back there was a message on the answer phone for her to go back to clinic next Tuesday!  Maybe from my e-mail, but out of the blue.
> 
> Carol, she doesn't have probiotics, but maybe it is worth a try.  She can't really get any worse!
> 
> Kiik - thank you!  I will ask her.  I am not opposed to anything that would help her, but I know she is.  She hates even cigarette smoking..
> 
> So I guess we'll see how Tuesday goes.  Not really expecting much!


The Power of Expectation!!! Positive thing Niks. Let's all expect something great for Jaime this time and say a prayer to that affect as well!:hug:


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## Niks

Kim - If she doesn't get some proper answers or at least some offer of more tests, then I will be pushing for St Marks.

Stephyjane - I did wonder about a bug.  She may have eaten gluten unknowingly, but she has eaten it before and never reacted like this before.  She at the same things as me and no one else was sick :eek2:  Her sickness has died down though, so maybe it was something she ate.  I guess only time will tell!

Dusty - the photo is a great idea, I always have some on my phone I guess it wouldn't hurt!

It takes her so long to get up the stairs, my 94 year old Grandmother is much faster!  She has needed help to get out of the bath on several occasions.  This is now becoming very disabling and surely can't be ignored anymore.


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## DustyKat

The surely shouldn't keep ignoring her Niks. :ghug: 

I didn't realise the change in Sarah until I was looking through her school photos one day, the change was heartbreaking. If I had realised earlier on just how significant it was I would have been like a rat up a rafter with the GP and demanded he tell me how that sort of change was okay. Seeing Sarah everyday I just didn't see it. I did confront the GP with the photos after the fact though. Of course that doesn't change anything but it made me feel good! :lol: 

Good luck hun, you are in my thoughts. :heart: 

Dusty. xxx


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## CarolinAlaska

I'd like to see the pics too.

Jaime will continue to be in my prayers - and I will hope that your GI won't back down on the tests he promised last visit.

Did you ever do the fecal calprotectin test privately?


----------



## kimmidwife

Niks,
I will be praying that Tuesday they will either agree to look deeper or transfer her!


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## Niks

Carol - her fecal calprotectin  came back at 15 so was perfectly normal!

She has struggled this weekend, spending a lot of time in bed, trying to sleep.  

Think she is really run down.  Her mouth is full of ulcers, she has suffered with these before but recently not so bad.  She has been getting chest pain and is really out of breath even climbing the stairs.  And more recently she has been waking up absolutely dripping wet with sweat in the night, but feeling cold!  

She has taken a citramag today as she is vomiting everything, so guessing backed  up again...  Grrrr.


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## 723crossroads

It sounds like she is having a terrible flare. The ulcers and the fever sound horrible. I wish she could be seen today. It sounds scary to me Niks. Does she have a fever? Is she able to drink anything?


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## Niks

She's drinking but vomiting too, so making sure she keeps drinking little amounts at a time. Her temperature is 37.7 so just a low grade temperature..,


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## 723crossroads

I hope she can hold some down. This is serious in my opinion. The ulcers show definate inflammtion and acid. I getthem too but they said I have too much bile acid. That is why I take the questran and for D. It works most of the time. But Jaime it would not help with her motility issues.I just wsih I could think of something that everyone is obviously missing. Does she have her gall bladder?


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## xX_LittleMissValentine_Xx

I had night sweats too before I was diagnosed. This sprung my GPs into getting me a referral. They are horrible, wake up so wet and cold. 

I really hope she starts improving soon. x


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## Niks

Thanks Holly, and yes Theresa, still has her gallbladder x


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## 723crossroads

Did they check her gall bladder to make sure it's all ok?


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## dannysmom

Hi Niks ... do not like the additional symptom of "She has been getting chest pain and is really out of breath even climbing the stairs".  Has she seen the cardiologist yet? Do you have a heart rate and blood pressure cuff at home?


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## kimmidwife

Niks,
I have to second Danny's mom on this. Chest pain together with her fainting issues points to a cardiac issue in my opinion. Call her GP and tell him about the chest pain. I know the pain could be related to the vomiting. (Acid reflux) but still until cardiac has been checked and ruled out it must be looked at and checked out now. Cardiac must always be looked at as it can be the most serious.


----------



## Niks

She has an appointment with Consultant tomorrow, will make sure he is fully aware of everything that is going on!  I think it probably is heartburn, or reflux.  It is just a new thing for Jaime :eek2:


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## my little penguin

did you get photos of the mouth ulcers?


----------



## Jmrogers4

Just thinking of you and Jamie.  Hope all goes well tomorrow (today) at appt.
Sending lots of hugs and support your way.  Glad you were able to get away for a little while and hope the next time you both are able to get away she has loads of energy and is feeling fantastic.


----------



## Niks

Thank you Jacqui.

MLP - No, but that's a good idea, will take some.  She still has a fair few so can show GI today x


----------



## my little penguin

Ask the Gi to send you to cardio/Rheumo for eval for bechets .


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## Niks

Okay will add it to my list.  Thank you x


----------



## DustyKat

Good with the consult today Niks. :ghug: 

I hope more than anything you are able to get some answers or at the very least direction today. 

Just something to keep at the back of your mind hun. If they still can't find anything, and symptoms continue, for those that do end up with a diagnosis of IBD it is not uncommon to have EIM's well before the intestinal evidence shows up. 

Good luck! :goodluck:

Dusty. xxx


----------



## Stephyjane

How did you get on today Niks? :hug:


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## Niks

We were in consultation for 2 hours. She IS having colonoscopy and endoscopy. If nothing shows on those she'll have pillcam.

He checked her thoroughly and does not think she has any worries about chest pains.

He also does not think she has coeliac disease!!! 

They have a plan for if she needs admitting, which will be on her notes, and he's referred her to the pain team!!


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## Stephyjane

Wow, that's sounds a much more positive appt. When is she going to have the tests? I hope this means you are on the road to solid answers. :hug:


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## Niks

He wants to do them asap. So hoping within the next few weeks x


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## Stephyjane

That's brilliant. I hope you get some answers xx


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## Jmrogers4

Sounds like a productive consult.  Hope the scopes give you some answers this time.


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## fosterschick

Sounds promising , fingers crossed xx


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## xX_LittleMissValentine_Xx

Great news  
Lets hope this is the start of you moving forward x x


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## kimmidwife

I am soooooo happy to hear it sounds like they are finally taking things seriously. Will keep her in our thoughts and prayers that she finally gets some answers!


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## Dexky

Please let this be the the beginning of the end of her nightmare!!!


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## xmdmom

Wow. Here in the U.S. right away means today, tomorrow or in a few days. So I'm surprised that right away is in a few weeks.  

Hope you get some answers very soon!


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## Devynnsmom

I hope you get some answers soon. I was thinking the same as xmdmom, in Canada right away means within days. Hopefully it will be quick and they will figure out what the hell is going on. (((hugs)))


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## Clash

I hope this heads everything in the right direction and they can get J to feeling tops real soon!!!


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## upsetmom

Great news!! 
Hope you get some answers:hug:


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## Catherine

Hoping for answers.


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## Mehita

Well, it's about time someone started listening to that poor girl!! Though I'm not sure if I hope they find something or not...? I wouldn't wish this disease on my worst enemy, but she's been through so much. Some sort of dx would be kind of nice.

Good job hanging in there, Niks!


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## CarolinAlaska

Niks, I am so glad for the good consultation, and glad for the plans being made.  Let us know when it gets scheduled.  I am afraid that she will get sicker between now and then and that a hospitalization will mess things up again.  I will pray that it won't.  I want to be praying for her prep - so let us know when that will be.  Thinking of you both.


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## Kimberly27

So glad to hear there is progress being made!  

Who was the consult with?  I must have missed something.  Oxford?  GI team?  Diagnostician?

Hugs!   

Kimberly


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## Niks

Thanks everyone.

Kim it was with Oxford Gastro.  

She has just missed a call from them!  (no message, why do they do that!?)She called them back but can't get hold of anyone.  So waiting for another call.  Maybe about bloods but hopefully about appointment for procedures.


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## Sascot

What great news.  Finally!!  Hope they call back soon.


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## Niks

Still no call back, so not sure what is going on there, but she has a letter from Oxford with date for Endoscopy and Colonoscopy!  

Next Tuesday!  I can't quite believe it!!!


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## xmdmom

Yay!


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## Clash

Woohoo!! So glad to hear that the tests have been scheduled!! How is J doing day to day right now?


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## Jmrogers4

That is quick! Yahoo so glad things are moving along.


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## Niks

Was expecting to wait at least 2 weeks but he did say asap!

She's struggling with pain, and unfortunately started vomiting again! GRRR.  Thought that was behind her.  She can't walk any distance at all, is just too painful and just hard work, she is so slow!

But hey, at least she now has some proper tests in the pipeline, and very soon!  :dance:


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## Clash

Is she eating much? With the clean out coming up and the doctors thinking she gets backed up have they discussed a diet up until clean out or possibly a longer clean out to ensure everything is evacuated? Of course, poor thing if she is vomiting again, she probably hasn't felt much like eating.


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## Niks

No diet discussed!  I do think she'll need to double up on the citramag.  She has plenty at home and they've sent her more.  

She's going to love that bit!


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## CarolinAlaska

I'm so glad to hear she has dates!  Sorry she is still doing so poorly!  One more weekend!


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## Tesscorm

So glad she is finally going to have the scopes!  I pray they will give you some real answers! :ghug:


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## Sascot

Fantastic news.  Not long to wait now!


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## ChampsMom

Oh my gosh Niks!  Yeah!!  Crossing fingers, praying hard that this gets some results for you all!!!


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## QueenGothel

:luigi:

Happy dance for scopes! Yippee


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## vtfamily

Can't do much more than offer you hugs...continuing to pray for you both!
Cheryl


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## CarolinAlaska

Niks said:


> Still no call back, so not sure what is going on there, but she has a letter from Oxford with date for Endoscopy and Colonoscopy!
> 
> Next Tuesday!  I can't quite believe it!!!


Have you started prepping her?  How's it going?


----------



## Niks

Thanks for asking Carol.

Well, instructions were for today no fibre and tomorrow clear fluids and then 10 senna at 2pm and citramag at 4pm and 7pm.

But because of her history, she started clear fluids only today and had a citramag this afternoon.  Had a couple of pretty hard BM's but hopefully tomorrow things will start moving properly.

She has had an appointment through for bone density scan on 21st too! Seems like all happening together!


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## Tesscorm

Good luck!  Hope the clean out goes alright! :ghug:


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## Dexky

Hoping for clear answers tomorrow!  Good luck Niks and Jaime!!


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## Niks

Thank you!

Her scopes are Tuesday Dex, we are just trying to make sure she really is cleared out!


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## Dexky

So almost tomorrow for you !


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## Sudsy

Wow.  I am new here and I started reading this thread over an hour ago and just could not stop.  

My heart goes out to both you and your daughter.  I truly cannot comprehend the lunacy of what she has been through, and the rotten medical care that has been given.   SO GLAD that you are hopefully near finding out the real answers here so she can finally get on with being a 19yo and live a normal life again.

Praying that Tuesday brings answers.  Hang in there.


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## Niks

Hi Sudsy. Thank you! I really hope so too. 

You look like you've got it pretty hard with 3!

Glad you found us.  As you can see there's so much great advice and support on here xx


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## Sascot

Good luck for tomorrow!


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## Catherine

Its already tuesday here.  Hoping all goes well and you both get the answers you need.


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## Tesscorm

Good luck tomorrow! :ghug:


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## kimmidwife

Just wanted to pop in and wish a big good luck for tomorrow. Keeping my fingers triple crossed that they find some answers! Sending you both hugs!


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## Crohn's gal since 1989

Good luck with the scopes!  Fingers crossed for definitive answers!


----------



## Clash

Just wanted to wish good luck with the scopes!


----------



## Niks

Thanks everyone. We're heading off now! X


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## fosterschick

Wishing u luck today xx


----------



## Mehita

Wishing you the best of luck today!


----------



## upsetmom

How did everything go Niks ?


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## Niks

Scopes went okay.  She said it was really painful, but they said the clean out was good.  They managed to get all the way to the terminal ileum.  Nothing seen!  Have taken biopsies.  

I have been looking and can't work it out, so if anyone else can help that would be great!  If they got to the terminal ileum did they see inside small bowel?

Hmmm..  Just worried that if really nothing showing that they'll go back to IBS diagnosis without pillcam test.  Really hope not!


----------



## Jmrogers4

They can usually only go a little bit past the TI if they can get through so no wouldn't answer if there are problems in small bowel and would need a pill cam.
Hope biopsies come back quickly.


----------



## dannysmom

Thanks for the update Nik  ... still push for the pillcam as there is still lots they have not seen in the small intestine.


----------



## Tesscorm

I can't remember now, has Jamie had an MRE?  An MRE will also provide an image of the small intestine.  I believe a pillcam will provide clearer/more exact pictures of her small intestine, however, the concern with a pillcam is if she has any narrowing (which can be caused by inflammation or scarring), the pillcam could get stuck.  There is a dummy pillcam available - from what I've read, it is slightly bigger than the real pillcam but will dissolve after a period of time if it gets stuck.  The assumption being if the dummy can go through without a problem, the real pillcam should be fine.  :ghug:


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## Clash

Glad to hear the colonoscopy has been done. I was wondering about the MRE as well. I think the pillcam would be great but if any of her issues deal with motility or stricturing then there is a chance the pill cam would get stuck due to that, hopefully a patency pill(dummy pill) will be offered first.


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## Patricia56

There is a downside to the pillcam in addition to the risk of retention.

It only records what it is pointed at and the speed with which it transits the small intestine cannot be controlled.

We did pillcam twice with Badger. The first time it went through the duodenum so fast they couldn't see anything. They did see some mild ulceration in a couple of frames farther along but nothing severe - nothing as severe as what was really happening.

The second time the capsule got stuck in the jejunum somewhere and sat there for 6 hours so they got very little. The one image they did get that was significant showed a small bleeding ulcer.

This was several years ago and the MRE was not available. The test that finally revealed the extent of his disease was a small bowel follow through.

If she has not had an MRE I strongly recommend that be done along with or instead of a pillcam. It is much more comprehensive and, in the hands of skilled and experienced staff/radiologist, is a very effective diagnostic tool.

the key is to get it done at a center that does them frequently so they have the experience necessary to conduct the test well and accurately read the images.

And reaching the terminal ileum implies that they were able to see a small section of the small intestine but probably only 10 - 14 cm. In order to see the TI they have to get the scope through the ileocecal valve (ICV) that controls the passage of food from the small intestine into the large intestine. Then they must make a sharp turn - sometimes so sharp a turn it is a u-turn and advance the scope as far as possible. If there is swelling in the ICV or TI they may not be able to get into the TI at all.


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## fosterschick

hi great the have done t scope this way , but I thought jaimes original thickening was in small bowel so see what endoscopy finds or better still a pill cam , if I am honest I didn't expect them to find anything , sound more like jaimes problems are higher up god bless her , 1 done now 1 to go , big hugs xx


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## DanceMom

I'm really hoping you get some answers with the biopsies!  A's scopes looked great visually and her biopsies were rather confusing.  The MRE was iffy but the pill cam basically solidified the diagnosis for her.  Sometimes you need to use all of the possible resources to create the best picture of what is really going on.


----------



## Niks

Jaime did have MRE back in March but was after 6 months of solid steroids. It was clear! 

I think they would do dummy run first as she does have exceptionally slow transit! i am guessing she would need to do clean out again? Appointment on 17th, don't think we'll know anything until then! :-/ xx


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## my little penguin

make sure they count Eosinophils on the biopsy slides

Eosinophilic gastorenteritis can also fit without any visual damage

http://emedicine.medscape.com/article/174100-treatment


----------



## Niks

Thank you MLP xx


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## my little penguin

one other thing you can have both diseases IBD and EGE ( eosinophilic gastroenteritis)


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## DanceMom

We did not do a clean out for the dummy pill.  We weren't really worried about the pill getting stuck, just whether or not she could swallow such a large pill.  For the actual procedure we did a modified clean out.  The day before she was allowed only clear liquids after a light lunch and she was to take 1 dose of Miralax in the evening.  But A has record fast transit time so your girl may require something a little different.


----------



## my little penguin

DS did a clean out but they just placed his during his scope so that made it easier. WE also did not do a dummy pill since DS had been passing clumps of ASACOL HD ( close to pill cam size).
He had no issues.


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## dannysmom

I would recommend a clean out. It is not always required. Danny was not instructed for a full clean out and in some pictures the dr could not distinguish debris from early Crohn's ulcers.  I wished there wasn't so much debris.


----------



## Farmwife

my little penguin said:


> one other thing you can have both diseases IBD and EGE ( eosinophilic gastroenteritis)


^^
Yeah that!

Grace and Jamie are similar in many way.


:hug:


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## CarolinAlaska

J's scopes showed hardly anything.  The MRE showed nothing.  The pillcam was the one that showed ulcerations throughout.  She had to do a full clean out for it too (9 days after the original cleanout - poor dear!).  Don't lose heart.  How's Jaime doing now?  What about the proximal duodenum?  Did they do an upper GI scope too or just the colonoscopy?


----------



## Stephyjane

Hi Niks, So do you have to wait now for the results of the biopsies, have they indicated to you what will happen next. How has she been since the scopes? Thinking of you xx Steph


----------



## Niks

Yes waiting for biopsy results and I guess we don't really know what else is going to happen or when until 17th :ybatty:

It is a little reassuring to know that other people haven't got answers easily either.

Thank you for all your messages.

Carol - she's getting pretty fed up with the constant pain.  Also she's been vomiting again :stinks:


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## Maya142

Niks - I just read through this whole thread and cannot believe you and your poor daughter have been through! Like many others, my daughter's scopes looked ok (a little red in the TI but nothing too bad) but biopsies showed inflammation in her stomach, terminal ileum and colon, even though she had been on low dose prednisone for her joints for a month before the scopes. Don't give up hope!
Good luck! 
Maya


----------



## EthanClark

If she does the pillcam definitely request the dummy pill first. I did the dummy pill and it got stuck in a stricture for about a week before it finally dissolved. It is much better to check first to make sure it will make it all the way through. Good Luck


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## DustyKat

Sending you all the luck in the world Niks that you and your lass get some solid answers! 

Thinking of you both. :heart: 

Dusty. xxx


----------



## xX_LittleMissValentine_Xx

Seems strange to me that it would hurt but they can't see anything. To me it hurting suggests she is really sore, which we would think so anyway with her being in so much constant pain. 

I have heard before, on here I think, about how inflammation can be on the outside of the intestines so doesn't show as much in scopes/pill cams etc. But then you would think that would show up in a scan?? 

Hope the biopsy gives you a clue!


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## Niks

Holly, she had the CT Scan last year but no other scans.

It's funny you should say that though, because when she was younger and had laparoscopy for suspected endometriosis she had an inflamed bowel. Seen obviously from the outside.  I have mentioned this at appointments but they don't think it's important!


----------



## Niks

Errrrggghhh - black vomit!  That's new and not at all happy about that.  She says she doesn't feel too bad.  

I guess if it continues will call GI.   Hopefully will stop!


----------



## DustyKat

Oh man Niks......I hope it is a one off, poor love. :ghug: 

Thinking of you both! :heart:

Dusty. xxx


----------



## Niks

Thanks Dusty.  

She vomited black twice yesterday, but now back to food and bile!


----------



## xX_LittleMissValentine_Xx

Are her blood tests showing any inflammation? 
I think what you said sounds important!! Maybe do some research into inflammation on the outside and present them with that??


----------



## Niks

No - her inflammatory markers are always normal.

The only bloods that are not normal are ferritin (9) and B12 dropping   Last count was 153.

She is now vomiting pretty much everything again :eek2:  

Good idea though Holly, will research

xx


----------



## Farmwife

Did you every find out if they will check the biopsy's for eosinophil's?
 If they do, even if they say the numbers aren't high try to still get the numbers.


----------



## Niks

FW - I don't know, I did e-mail to ask but didn't get a reply.  I hope that we'll get results of all the scopes and biopsies when we go on 17th


----------



## Dexky

I can't believe they just blow you off like that Niks.  Would they send the results directly to Jaime?


----------



## Sudsy

I am sorry this nightmare has not ended.....

Another vote for "wait for the biopsies".  My dd's most recent scopes showed many problems and many sites that were okay.  Until the biopsies came back, and then many places that we thought were okay were moved into the problem category.

Has her vomit been tested for blood?  I would definitely have her throw up into a bucket and take it along to the doctor's office.  These things must be documented.

May you soon have answers and a return to good health for your daughter.  Hang in there.


----------



## kimmidwife

I have to agree with Sudsy take a sample of the vomit to the doctor. Black vomit sounds like blood. It could just be her esophagus getting irritated but it needs to be checked out.


----------



## Niks

No her vomit hasn't been tested.  If she vomits black again I will get her to get a sample.

To be honest I don't think anything will show on biopsies but will find out on 17th!  I really don't think we'll get any results before that.


----------



## littlemissh

There is no point checking vomit for blood as most vomit contains small amounts, but the quantity cannot be determined. It is therefore not done (not in the UK anyway).

A good quality picture of any black vomit is however a good idea so that it can be shown to the GI and ask him what he thinks.


----------



## Kimberly27

I agree about the vomit photo and waiting for the biopsies.  

My son's scopes look perfect, and it wasn't until the biopsy results (which were Crohn's positive) that we had any answers.

I would definitely call everyday and see if they'll give you answers sooner.  I don't understand the ASAP rush, and then the delay in results...  Confusing system.

Kimberly


----------



## vtfamily

Any luck with the Mayo Clinic????


----------



## fosterschick

Hi niks , dropping in hugs again , I wondered if NHS are still going to hide away from IBD again if ' anal irrigation 'by coloplast would be any better than constant enema's, to keep jamie moving and cleared out and hopefully in that case a bit less sick ? Just throwing ideas in t pan xx


----------



## Niks

Hey.  Basically Mayo Clinic just sent me details of international referral.  There is no way in this world I could afford to take her/

Fosterschick, at the moment she only uses enemas very rarely.  Her bowels are moving better with the Prucalopride .  She was being sick even after Colonoscopy clear out last week, so guessing it isn't just the constipation making her so sick :eek2:


----------



## littlemissh

Has she had a gastric motility study? You eat a radioactive omelette (yum...not..) and then have radio tracer studies taken after to assess how quickly the stomach empties and the nature of its contractility.
Some people who repetitively vomit despite no obvious cause being found have abnormal gastric motility which makes them vomit. It is part of the dysmotility range of conditions. There are meds that can help or a gastric pacemaker works as well but very rarely needed.
I think it may be worth asking for this study if scopes and pill cam are unhelpful. It is a very distinct possibility if you look at all her symptoms/tests so far. 
ps I had all the scopes/scans/inflammatory markers and the only thing that found my crohns initially (progressed since then) was a pill cam. I was very anaemic though which led them down the pill cam route.


----------



## Niks

Littlemissh - Thank you.  This was discussed a very long time ago but seems to be forgotten about.

I really hope she gets the pillcam soon.  How long was it before they did your pillcam test?


----------



## littlemissh

It was requested when I started becoming very anaemic. Initially I just lost weight and vomited, pain etc.  They thought it was my gallbladder as all tests normal but gallbladder removal made minimal difference. I think the pill cam was 14 months after it all started, its all a bit hazy now after so many subsequent tests and pill cams! The gastric motility test was before the pill cam.


----------



## littlemissh

Once requested it took about 1 month to get the first pill cam and 1 week for the second. (different hospitals). My local doesn't do them so my gastro refers me to one of 2 other local-ish units.


----------



## vtfamily

Sorry the Mayo Clinic idea doesn't look good.  I was hoping that you'd be able to do something via mail/e-mail.


----------



## Niks

J has not had the best week.  Her work have not let her in until she gets a detailed letter from the Doctor about what is wrong with her, (if only we knew!!)  what meds she takes and how they should deal with fainting etc. 

GRRRRR makes me so cross.  She just wants to try and get on with her life.  Her pain has been so bad.  Her vomiting is back with avengence, including some blood.   (probably a small tear in stomach).  She is losing weight rapidly again.  This is just the last straw really.  Her GP has written a letter, which she's taking in later.  She has been getting really tearful and just really down.

Just to add into the mix, even though she has depo jab and takes contraception pill for breakthrough bleeding has had really heavy bleeding.  Sure this is not going to help with iron levels :eek2:


----------



## DustyKat

Oh my goodness Niks......this isn't a roller coaster ride for you both but the blessed Twilight Zone! Ugh! 

Just wishing more than anything that you had answers and lasting relief for your lass. :ghug: 

Dusty. xxx


----------



## Clash

Just wanted to send hugs to you and J. I know all of us here are hoping that there is some relief for her and you both soon and that she able to get some long needed answers! HUGS!!!


----------



## kimmidwife

Just sending a hug! Any word on scope biopsies yet?


----------



## Tesscorm

Just sending hugs!!! :ghug:  :ghug:   and more prayers that J gets an answer soon!! :ghug:


----------



## Niks

Thank you all.  No Kim, I guess we won't know anything until Tuesday.

Her work won't even consider her even going in to work until after her appointment even though her GP has given her a letter!!!


----------



## Sascot

Sorry to hear things are still bad.  Hope the weekend isn't too bad so she doesn't suffer too much before the appointment. :hug:


----------



## CarolinAlaska

Just checking in on you and Jaime.  I hope that Tuesday brings answers.  Thinking of you both.

Carol


----------



## Kimberly27

Niks-

How frustrating for Jaime and you!  It sounded like work was a good distraction for her.  What type of work does your daughter do?

Kimberly


----------



## Mylittlesunshine

Hi niks how's things? How's Jamie doing? 
Thinking of u guys x x


----------



## CarolinAlaska

^^Ditto That^^  Thinking of J


----------



## Niks

Thanks for thinking of us!

Kim - she works in a call centre.  Incoming calls, so nothing really strenuous!

She's just fed up, she is really tired all the time but finding it hard to sleep because of the pain :-/ .  Her weight is still dropping.  URRRGGGHHHHH!!!  :ybatty::ybatty::ybatty:


----------



## Mehita

Appt this Tuesday, right?


----------



## Niks

Yes Mehita - this Tuesday x


----------



## Mylittlesunshine

Niks I hope the appointment goes ok 
And you finally get some answers 
Will be thinking if you both as always 
Xxxx


----------



## kimmidwife

Niks,
Sending good luck vibes for tomorrow!


----------



## Catherine

Wishing you all the best for today appointment.


----------



## Niks

Thank you all.

Am so glad we're going today.  She feels dizzy everytime she stands and is vomiting everything within seconds of eating it again :eek2:

She is managing to keep down fluids, is getting pretty fed up with it all.


----------



## lsgs

I can't help but imagine what all this constant vomiting is doing to her body 

Awful


----------



## Ands

Good luck Nicks for you both.  X


----------



## DustyKat

Sending loads and loads of luck and well wishes your way Niks! :goodluck: 

Dusty. xxx


----------



## Tesscorm

Good luck at the apptmt!! :ghug:


----------



## Clash

Good luck at the appt! Hugs and support!


----------



## Jmrogers4

Good luck at the appointment.  Will be thinking of you and Jamie today and sending lots of positive support.


----------



## DanceMom

Dying to hear how the appointment went!  Hoping you got some answers!!


----------



## Lewiss mum

Hey niks , god you have been to the mill and back a thousand times havnt hype , I don't come on here unles lew is having a flare , don't give up Hun it took four years and a lot of heartache and stress to get someone to find out what was wrong with him , hopefully someone will have answers for you just keep having in there ,xx


----------



## Maya142

Thinking of you and your girl Niks!


----------



## Mylittlesunshine

Any news? Niks thinking of you both 
Hoping for good news x x


----------



## Niks

Thank you everyone!

We've just got back.  Scopes and biopsies 'normal' however black spots seen throughout bowel.  They have put this down to laxatives!?  Has anyone ever heard of this?  I have googled and can't find anything.

He is scheduling pillcam asap as he said they couldn't see in small bowel at all.

He also said there is absolutely no evidence of coeliac!  

Her vomiting is bad right now.  She feels really hungry, but vomits immediately when she eats anything at all!!  :ybatty::ybatty::ybatty:

I am glad pillcam is finally going to be done.  What if nothing seen on that!?


----------



## Tesscorm

I'm so sorry that you didn't get clearer answers! :ymad:  I can't imagine how frustrating this is for you and Jamie.

I don't know what will come next, after a pillcam   But, hopefully, those images will provide some answers!

I do know that crohns might not show up on a scope or biopsies because inflammation can be microscopic, so not seen visually and, as crohns can affect patches rather than a continuous segment, if the inflammation is microscopic, then biopsies are taken randomly...  so, in theory, may miss inflamed patches???  But, I'm not sure how much of a stretch this is or how often it occurs. 

Keeping both of you in my thoughts and good luck with the pillcam!


----------



## Mylittlesunshine

Hi niks sorry you didn't get much further but glad
The pill can us being done. 
You mentioned about black patches if I'm right
I think it's called melanosis coli it's wear the laxative
After using it for too long or to much leave stains behind.
Google it


----------



## Mehita

No evidence of Celiac? She's been eating a gluten free diet for awhile, hasn't she? Maybe the villi have healed?

Going out on a limb here, but what about cyclic vomiting syndrome?


----------



## Niks

Ok - have just found out the same.  

Mehita, she had been eating gluten free since December, but because at her last appointment she was told there was no evidence, she was eating normal diet three weeks before scopes.  He thought that damage would show if she was coeliac.

Her symptoms have never been any different they don't improve at all with her being gluten free, so she just doesn't think it's worth it unless she absolutely has to.


----------



## Mylittlesunshine

Glad you found it niks , what type of laxative
Does Jamie use?


----------



## Niks

She takes Prucalopride daily.  Citramag, senna, sodium docusate and magnesium hydroxide.  She only takes these if she has to though.


----------



## Mylittlesunshine

Wow that's alot, most likely the senna is the
BiggesT cause of this but other laxative can do 
It to from what I've read x 
I hope u sort things for her soon x


----------



## Catherine

Know in Australia they like adult to being eating these four slicies of white bread for six weeks before testing for caelic.  Has she had the genes test?


----------



## Niks

No she hasn't Catherine?  Is that blood testing?


----------



## Sascot

Frustrating again! That is good they will do the pill cam though.


----------



## Catherine

It a blood test.  It does not approve caelic but can rule it out.  I will posted links went I get to work.


----------



## Niks

Thank you Catherine.  All of her blood tests for coeliac were negative, she was diagnosed initially in Swindon with biopsies showing 'coeliac tendencies' .  Oxford have never found this, however she was gluten free.  She has given up on that for now, as she is so fed up with it making no difference and as Oxford say they are not convinced, neither is she!!


----------



## Catherine

This is not the standard blood test for coeliac.  It is test to see whether she carries the either of the two genes for coeliac disease.  Not everyone who carries these genes will develop coeliac disease.

I think a negative genes test would rule out coeliac disease.

http://www.coeliac.org.au/coeliac-disease/

Who gets coeliac disease?
Coeliac disease affects people of all ages, both male and female.

You must be born with the genetic predisposition to develop coeliac disease. The most important genes associated with susceptibility to coeliac disease are HLA DQ2 and HLA DQ8. *Either one or both of these genes are present in virtually every person with coeliac disease.* While 30% of the population carry one or both of these genes, only 1 in 30 of these people (approximately) will get coeliac disease.

A first degree relative (parent, sibling, child) of someone with coeliac disease has about a 10% chance of also having the disease. If one identical twin has coeliac disease there is an approximate 70% chance that the other twin will also have coeliac disease (but may not necessarily be diagnosed at the same time).

Environmental factors play an important role in triggering coeliac disease in infancy, childhood or later in life.


----------



## xX_LittleMissValentine_Xx

Did you get to talk to them about inflammation on the outside of the bowel? 

Feeling so frustrated and sad for you niks. Can't stand the thought of her being in so much discomfort. x x


----------



## Dexky

Sorry you're not getting anywhere Niks!


----------



## Niks

I tried Holly, but he skipped over it saying they were scheduling a pillcam.

She is still vomiting everything except fluids .  Also had a lot of blood in BM and some pretty big clots.  Bleeding and clots dark red.  Could this be from small bowel?


----------



## Kimberly27

What about the Cyclic Vomiting Syndrome angle?  What is their take on that?

I'm so very sorry for both of you.

Kimberly


----------



## CarolinAlaska

Pill cam or no, diagnosis or no, this girl is sick and losing weight - what about treating her symptoms now with bowel rest and TPN?  From there move to EEN until she can hold that down and food is moving through right and later start on food.  Someone needs to do something other than trying to diagnose her and giving her 5 laxatives that obviously aren't resolving anything...  Sheesh!


----------



## Sascot

I agree, it is ridiculous leaving her like this. As much as she hates hospital (and I don't blame her) they should admit her, do full EN and rest her tummy and intestines and try different meds till she improves and puts on some weight. Any idea when the pill cam will be?


----------



## CarolinAlaska

CarolinAlaska said:


> Pill cam or no, diagnosis or no, this girl is sick and losing weight - what about treating her symptoms now with bowel rest and TPN?  From there move to EEN until she can hold that down and food is moving through right and later start on food.  Someone needs to do something other than trying to diagnose her and giving her 5 laxatives that obviously aren't resolving anything...  Sheesh!


By the way, I in no way am criticizing you with this Niks, just that health system you are stuck with !


----------



## Niks

I agree with you all!

Kimberly, they think that as we have managed to get her vomiting under control before that Cyclic Vomiting Syndrome is unlikely however I don't think they've ruled anything out.

I can see her being admitted very soon.  She is now struggling to keep down fluids and is getting chest pains again.  :ybatty::ybatty:

She doesn't think that she is really backed up because has been going at least every other day, sometimes every day.  So a little baffled by this.  I am thinking that she probably is really backed up.

She called GI Secretary and left a message this afternoon, but if no improvement over night will take her to A&E  :ymad: yet again


----------



## Kimberly27

Has the vomiting gotten worse since she went back on gluten?  Gluten intolerance?

Kimberly


----------



## RosaleeMae

Niks said:


> Thank you everyone!
> 
> We've just got back.  Scopes and biopsies 'normal' however black spots seen throughout bowel.  They have put this down to laxatives!?  Has anyone ever heard of this?  I have googled and can't find anything.
> 
> He is scheduling pillcam asap as he said they couldn't see in small bowel at all.
> 
> He also said there is absolutely no evidence of coeliac!
> 
> Her vomiting is bad right now.  She feels really hungry, but vomits immediately when she eats anything at all!!  :ybatty::ybatty::ybatty:
> 
> I am glad pillcam is finally going to be done.  What if nothing seen on that!?


I just read on this forum to make sure they do a dummy cam first so the pillcam doesn't get stuck in the intestines anywhere.


----------



## Niks

Kimberly she is back to where we were in March when she was completely gluten free.  I just don't think this is causing her problems.  Her biopsies were clear even with her being pretty sick.

At the moment she is not eating anything with gluten in just in case but she is still getting worse.

Rosalee - she has to do colonoscopy clearout before doing pillcam.  That's if she can tolerate it and at the moment that is looking doubtful


----------



## xX_LittleMissValentine_Xx

Thinking of you both niks x


----------



## QueenGothel

Can't they clean her out in the hospital the girl could probably benefit from a couple days of TPN for a good view of the guts.  I'd say it is worth a go.


----------



## Niks

She took herself to emergency care last night to get injection to stop vomiting.  It worked overnight, but now back to vomiting within minutes of eating or drinking anything.  :ybatty:

Trying to convince her to go to A&E - again :eek2:


----------



## RosaleeMae

Poor girl


----------



## Mylittlesunshine

So sorry to hear Jamie is having a bad time
I would get her to A&E


----------



## Niks

A&E not impressed that Gastro not bringing her in, say she shouldn't have to go through A&E.

Gastro on call absolutely awful..  He asked her if she 'thought' she needed to stay in.  She can't even hold down a mouthful of water!  He won't do x-ray as they know it is constipation.  Hmmmm!!!  Well she has been going regularly and her pain is no where near as bad as when she is really constipated. 

The have put her on IV fluids, given her IV anti sickness and some pessaries, which did nothing but come straight out!  GRRRRR


----------



## CarolinAlaska

Ugh!  Poor girl!


----------



## DustyKat

Bloody hell Niks......my heart goes out to you both. :heart: 

In my thoughts,
Dusty. xxx


----------



## kimmidwife

Hi Niks,
I have been off for a few days. Sorry to hear she is so poorly again. Soo happy to hear they finally agreed to do the pillcam. I want to second what Carolina Alaska said about getting her admitted and off of food to have bowel rest. Get them to hook her up to IV and nutrition given by IV as well this poor girl has been through enough already they need to just admit her and take care of her.


----------



## Mylittlesunshine

Hi niks how's Jamie doing? Any update? X


----------



## xX_LittleMissValentine_Xx

Do you know if her gastro will be able to see her while she is in there?


----------



## Niks

The gastro on call sent her home saying this should be dealt with as an outpatient !! Seriously! What an absolute idiot.

How can she function if she can't tolerate fluids! Poor J is not happy. She hates being in anyway, but to be made to feel that she shouldn't be there! GRRRRR.

He told her to call her GI"s secretary tomorrow :ybatty::ybatty::ybatty::ybatty:

NOT happy


----------



## Mehita

How hard will it be to get her to London? Someone has to help this poor girl. If she can't even tolerate liquids, what the hell is she supposed to do? 

My heart just breaks for y'all.


----------



## Sudsy

What a nightmare.....You are both in my thoughts.

I agree with Mehita.  I think her problems are bigger than Swindon can deal with and you need to get her to a major medical area.  I see this was discussed many pages earlier on this thread, and taking her to the US is out of the question (understandable!), but would London work b/c it's within the health system?

May answers and healing come SOON.


----------



## RosaleeMae

Hope to hear some good news from you soon:ghug:


----------



## Kimberly27

Can you bypass Swindon and just show up at Oxford next time?  What could Oxford do even if the hospital had said no?  They can't kick you out of their emergency room, can they?

Kimberly


----------



## pops14

Hi nicks,
My sister is under prof forbes at University college London he is top Crohns prof in uk and leactures all over world. we are in esat sussex your daughters GP canot refuse to refere her to London. think after all this time she needs a notch up on doctors. good luck Katie


----------



## littlemissh

GPs are not able to refer to most tertiary referral centres in the UK,unless you live in that hospitals catchment , only secondary care can. ie one of her current gastroenterologists. Thats how i was seen at both Addenbrooks and ST Marks, my current gastro referred me for their opinions.


----------



## pops14

Our GP refered her originally to st marks and she was under then for several years had recection and went into remission so was refered back to local gastro. when she started to deteriate she was then refered back to UCL neither are are local London hosp that area is linked to that is Guys/st thomas
.So its worth a word with her GP..  I am an ex nurse and have worked for years on medical wards and have seen numerious Consultants take months to diagnose poor crohns patients so when my son was ill I was like a dog with a bone, in fact the paed gastro told Louis at our first appointmant post diagnosis to thank me for being so persistant as he was very suprised at diagnosis and would not have persisted if not for me nagging.:ybatty::ybatty:


----------



## Mylittlesunshine

How is Jamie today? Thinking of you both x x


----------



## Niks

Kim - we did go straight to Oxford!

I think London may be the way to go if pillcam doesn't happen soon, but not sure how that'll work with severe vomiting. :eek2:

She's been pretty poorly. No urine yesterday at all orthis morning. GP called Oxford. So she's now on fluids and IV anti sickness and looks remarkably much better. She has chosen to go home after this bag, but GI calling GP about getting her anti sickness injections.

They are also organising stomach emptying test. Which she has never had, although was discussed and pushing pillcam!   So although not out of the woods they are trying!!


----------



## pops14

So pleased that you are pushing pill cam sometimes affected area just to far in for scopes, my sisters crohns is in her jejunium no scope bar pill cam can reach that so it took over a year to diagnose, she has very simular symptoms to Jamie when she is obstructing stomach swells up vomits back all she eats even if its days later does not go past her stomach. so glad she is rehydrated make mega fuss if she stops passing urine again she must keep hydrated kidneys are not to be messed with, poor love and you sounds a nightmare. she also needs MRI


----------



## kimmidwife

Niks,
I am so glad to finally hear that they are doing something. Sure took them long enough. Keep pushing! I am glad they are rehydrating her. No urine is always a very worrying sign. Did you tell her regular doctor what happened over the weekend? Maybe they could put a note in her chart so if she gets admitted on a weekend the doctors know to take it seriously and not just push her out the door.


----------



## Niks

Yes her GP was pretty horrified!  I just hope that they can get vomiting under control.  She has lost 11lb in under 2 weeks :eek2:


----------



## Catherine

Thinking of you both.


----------



## Dexky

After all this, I'm amazed she still has 11 lbs. to lose!  I hope this new thinking gets her somewhere Niks!!


----------



## Niks

Dex when she went through that long period of no vomiting her weight went up to 8stone 12.  She is already down to 8stone 1 but at her lowest was just over 7 stone.   Just hoping that she doesn't go that low again!  Over a year ago she weighed around 9 and a half stone.  :eek2:


----------



## Niks

Ok - Jaime had an up and down week.  Has been tolerating fluids but not really food.  She now had pain in lower RIGHT abdomen!  FFS.  This is new and is spreading round to back.  She has visable blood in urine.  Which she says has been there since Thursday.

She is waiting for Out of Hours Dr to call back, but my guess is she's picked up a urine infection from being dehydrated and not being able to pee at all!

Poor bugger


----------



## Kimberly27

If the pain is in her back, maybe she has a kidney infection?

Hugs.

Kimberly


----------



## Mehita

That's what I was thinking ^^. Kidney or appendix. Watch her carefully, Niks!


----------



## Niks

Luckily she doesn't have an appendix!

The Out of Hours GP diagnosed her with urine infection and has prescribed anti-biotics over the phone!  She had to take a urine sample in which looked like Rose wine!  Very pretty, but clearly not right.


----------



## my little penguin

Hugs still watch kidneys could be kidney stones .


----------



## Niks

I guess they wouldn't be able to see that just from urine sample MLP?  x


----------



## my little penguin

Right I had both but since urine was positive and no one bother to do a simple ultrasound
It went un treated for a long time while it grew.


----------



## Niks

Ok - thanks, will see how she goes x


----------



## Sascot

Hope the antibiotics help quickly.  She really doesn't need something else to deal with!


----------



## happy

Hi Niks,
People are often very sick (fever and  malaise) with kidney infections and they often have a lot of pain.  There is a test that you can do to check if it may be a kidney infection. Make a fist and use the motion as if you were pounding on a door (not knocking, which would have your first turned 90 degrees from the motion that I am suggesting) to thump gently on each flank. Give one quick, firm thump and pause for a reaction before doing the other side. With a kidney infection the vibration from the thump will bring on the pain. This does not usually happen with a bladder infection.

Because of Jamie's poor condition already, I would not mess around at home with a potential kidney infection. People can have serious complications from them. I would insist that her electrolytes are done at the hospital.


----------



## kimmidwife

Niks,
I second what Happy said. Check it out and if she is positive for that back pain take her right in. Kidney infections usually need IV antibiotics at least for a day or two.


----------



## Catherine

It long time since by middle daughter had kidney infection.  She symptoms were vomiting, sleeping all the time and lastly fever.  She didn't appear to have any pain.  She was hospitalise for 3 days.  The er doctor decided she was very sick, when she didnot cry when they put the IV in.


----------



## CarolinAlaska

Poor Jaime.  I hope the antibiotics help.  Can she keep them down?


----------



## Niks

She doubled up on anti-biotics yesterday so that she had whole dose for the day.  Still bloody urine but she says she feels a little better!

She did keep the anti-biotics down yesterday, thank goodness.  

Really hope it is just a urine infection.


----------



## Catherine

Make sure you get urine culture done once she of antibiotics.


----------



## DustyKat

How are things going Niks? 

Dusty. xxx


----------



## ChampsMom

They gave her an antibiotic prescript over the phone?!  :yfaint:  With everything that has gone on in her conflicted body!?!  I'm numb with shock... :eek2:


----------



## Jmrogers4

Think of you both


----------



## Niks

Yesterday her pain in right lower abdo and back were severe.  Probably not as bad as some of her previous abdo pain, but she put it at an 8 out of 10.  After ringing out of hours again, we ended up in Surgical Assessment.  They scanned her, as urine showing blood, but not infection and announced she DID NOT have kidney stones.  Did she want to stay in for pain relief?  Errrr No - thank you.  If no kidney stones she'll live with it like every other time.

This morning THIS is ONE of the 20 or so stones that she passed!!!  :eek2::eek2::eek2::eek2::eek2:


FFS - poor bugger.  What is the matter with these people.  They pretty much made out that there was nothing wrong with her.  She is getting a follow up urology appointment.  But my god that must have been painful, and only an 8 out of 10!  That stone was HUGE  :ybatty:


----------



## Niks

OMgoodness!  Didn't mean for that pic to be so big!! lol.

Do you think that her severe dehydration is the cause of this??


----------



## DustyKat

Good golly Miss Molly! Poor Jaime!  

Dehydration is definitely a cause for kidney stones Niks and is probably the most common cause in an otherwise healthy person. Be sure to have it sent off for analysis to see exactly what sort of stone it is...may give clues as to other underlying issues. 

Thinking of you both! :heart: 

Dusty. xxx


----------



## Niks

You'd think she'd think that was an obvious thing to do wouldn't you!?  I asked her if she took them in already, she looked at me horrified and said that she threw them away!  Great.  I have told her if she has anymore to keep them!!  GRRRRRR.


----------



## vtfamily

Given that 20 stones of that size were missed by the surgery dept...I think I'd be heading to London  No one should live with the kind of pain that Jamie endures, without some kind of an idea of what is going on.  Be sure to keep the sample and bring it with you.  Don't forget to email to all of her docs too.  Perhaps retake with a ruler for sizing perspective.

Best wishes to you both.


----------



## Niks

How could they have missed this??  She threw the stone away!!!  She is still vomiting lots, so dehydration is going to crop up again.  Is there anything she can do to avoid getting them again? x


----------



## Kimberly27

It makes me sad that that was only an 8 out of 10 on her pain scale.  No words...

Poor baby.

Kimberly


----------



## CarolinAlaska

Niks said:


> Yesterday her pain in right lower abdo and back were severe.  Probably not as bad as some of her previous abdo pain, but she put it at an 8 out of 10.  After ringing out of hours again, we ended up in Surgical Assessment.  They scanned her, as urine showing blood, but not infection and announced she DID NOT have kidney stones.  Did she want to stay in for pain relief?  Errrr No - thank you.  If no kidney stones she'll live with it like every other time.
> 
> This morning THIS is ONE of the 20 or so stones that she passed!!!  :eek2::eek2::eek2::eek2::eek2:
> 
> 
> FFS - poor bugger.  What is the matter with these people.  They pretty much made out that there was nothing wrong with her.  She is getting a follow up urology appointment.  But my god that must have been painful, and only an 8 out of 10!  That stone was HUGE  :ybatty:


How big is that thing?  Ultrasound isn't the best test for stones and often misses them.  Hopefully the urologist can help figure out what is going on.  Makes me wonder how much the vomiting is related to kidney issues...


----------



## Kimberly27

Are kidney stones a side effect of any of the medications she's been on?

Kimberly


----------



## vtfamily

Niks said:


> How could they have missed this??  She threw the stone away!!!  She is still vomiting lots, so dehydration is going to crop up again.  Is there anything she can do to avoid getting them again? x


The short answer is...they should not have missed it!  Time for mamma bear to show some serious teeth!!


----------



## my little penguin

I have seen it happen before with kidney stones.
Hope the urologist has answers


----------



## Trysha

Niks said:


> I guess they wouldn't be able to see that just from urine sample MLP?  x


Hi Niks
So sorry to hear this saga continues unabated for you both---just what is happening to medical care these days?.
The crystals which may form stones are often microscopically observable in a urine specimen, so a urinalysis with microscopy is worth doing and crystals specifically requested by the attending physician..
Too bad these days with dipsticks being used in the wrong places the microscopy gets overlooked.
Any formed stones should be saved for analysis since different substances cause different stone formation.
Feel better soon
Hugs and best wishes
Trysha


----------



## pops14

Niks, has she let the refering dr know that she passed these stones and she needs urgent referal otherwise they will refere her as routine. She needs a second opinion yes the vomiting could be linked to her stones but it does not explain her blood in her stools or the vomiting blood, what is her latest ESR and  CRP will indicate how much inflmation she has going on also she must go to GP and insist on Faecal Calpotectin being done this specifically shows up level of inflmation in gut simple test but very accurate and gastro DRs dont egnore. this whole sorry saga makes me utterly ashamed for the NHS what the hell are your local hospitals doing. Mail that pic to her DRs in Oxford and update them they need the whole picture. Katie


----------



## Sascot

Poor thing!  I agree - email that picture to the docs "treating" Jaime and let them know what's happening.  Shocked they managed to miss so many stones!!  Ridiculous.  
After the way they have left your poor girl, I would write and complain to the NHS complaints line.  Sure they have done some tests, but she is so poorly they should really be keeping her in until her pain, nausea and weight have stabalized!  If they don't know what it is they should be emailing other countries/doctors, etc until someone knows something.  I have noticed one of their greatest failings in this country is the willingness to admit they don't know something and then ask other doctors in other cities/countries, etc for help!


----------



## Niks

I am reeling from it all. She's in more of the same pain today so going to GP and will show him pic. She knows to save any more!!! 

Will get her to e-mail later. They take no notice from me! X


----------



## Dexky

I've never experienced kidney or bladder stones, but could ALL of her problems be attributed to them or is everyone thinking they are more a symptom than the problem?


----------



## pops14

Oh Niks, Poor love Your kidneys are so precious they are not to be messed with do hope her GP is pro active  and will support her the trouble is when you have an condition that goes undiagnosed for along time drs tend to glaze over when you start telling your history, its so wrong of them seen it happen time and time again but if they have the whole picture its so much easier to piece the diagnosis together. I would have thought its simple, she is obstructing following imflamation in her gut ?CD ?IC causing her to bleed and vomit ect just because she has not had positive biopsy they discard it, does her gastro con in oxford have specalist nurse if yes contact her they can work wonders. you need a good nurse on your side!!
Best of luck
Katie


----------



## Catherine

Pictures of kidney stones

http://www.herringlab.com/photos/


----------



## Niks

Wow Catherine!!  I guess the nearest is Struvite stones.  It's amazing how many different types there are!

Her GP laughed when he saw the pic of stone and asked how on earth the hospital could have missed them!  He is calling Oxford to let them know and liaise with them as to what to do.  

He is also pushing the urologist appointment.


----------



## Mehita

It's about time! Good luck!


----------



## Mylittlesunshine

OMG niks I can't belive they missed this niks
Actually niks I probably can belive they did. 
I'm so sorry for all poor Jamie is going though
I really hope you manage to get to the bottom of the
Cause of all her problems.
It really breaks your heart for all that Jamie 
Has gone through and is gon going through now. 
Hugs to you both x x


----------



## lsgs

This is unbelievable, there are no words for how negligent this is!

How did she manage to pass that without passing out? :O

She is one brave girl.


----------



## Catherine

Niks, glad your finally going to see a different type of specialist.


----------



## Niks

Isgs, she had a lot of pain, but was still not as bad as her normal abdo pain :eek2:


----------



## xmdmom

Sorry she's having to deal with this on top of everything!

"Struvite stones result from kidney infections. Eliminating infected stones from the urinary tract and staying infection-free can prevent more struvite stones." according to http://kidney.niddk.nih.gov/kudiseases/pubs/stonesadults/


----------



## QueenGothel

Omg, when you said back pain before that was the first thing that came to mind but someone already had posted it.  My mom suffers from Kidney stones every single year and almost lost her kidney last year.  She get lithotripsy treatments annually.  Poor Jamie! That is tough.  Dehydration is a key factor!  I have to worry about that with Rowan bc if her colectomy as well.  One word comes to mind... Negligence!


----------



## kimmidwife

Niks,
I am so sorry to hear about he stones. Kidney stones are actually found more commonly in people with Crohn's disease. Here is a link to the Crohn's and colitis foundation of America about kidney stones:

http://www.ccfa.org/resources/kidney-disorders.html

Another arrow pointing at Crohn's disease being the answer to her mystery illness. As much as I hate for her to have Crohn's it would be nice to have an answer to what is wrong and hopefully start a treatment plan.


----------



## Niks

Thanks everyone.  

Thanks for links too.  Kim - do you think this will convince them!?  Probably not!  We still have no dates for other tests so I guess we'll work out what's going on on Tuesday 

xx


----------



## Niks

Tuesday really can't come quickly enough.  Jaime really not doing very well.  Weight dropping, no solid food or fortisip being kept down.  Chest pains, a lot after vomiting, so think reflux.  Back pain.  She looks dreadful 

I just don't know what GI will suggest.  They surely can't leave her like this!


----------



## Catherine

Can you get a test done for UTI.  The above sounds like my middle symptoms with a kidney infection.  I try the GP.  Don't leave my daughter one kidney infection aged 2 and half caused kidney damage.


----------



## Niks

I really wanted her to go up for fluids and IV anti sickness this weekend, but she just wouldn't!  She just finished a course of anti-biotics for UTI, although the dip test was negative!

I just don't know Catherine.  She is just holiding out for Tuesday and I hope he has a plan!  I did e-mail Oxford the picture of kidney stone and her GP called them too, so they should be aware of what has been going on.


----------



## upsetmom

When is this nightmare going to end for this poor girl..:ghug:

Good luck on Tuesday.


----------



## DustyKat

Sending you MEGA LOADS of luck for the appointment and solid answers Niks! 

:goodluck::goodluck::goodluck: 

Dusty. xxx


----------



## Sascot

Good luck for tomorrow!


----------



## Crohn's gal since 1989

Niks, I have been lurking and following your thread since July when I landed in the hospital with my first obstruction.  Hopefully Jaime and you finally get some answers and much needed relief.  Our fingers are crossed for you in Canada!:goodluck::getwell::goodluck:


----------



## kimmidwife

Sending prayers for some answers tomorrow!


----------



## Niks

Thanks everyone. I really hope so too. Her throat is bleeding, I guess from stomach acids and she's been vomiting blood today .

Don't think we'll get answers tomorrow but hopefully will get a plan of what's going to happen and when! Xx


----------



## Jmrogers4

Ohh Niks, thinking of you and Jamie and so hoping you get answers tomorrow at the very least get on a path to get those answers.


----------



## Catherine

Niks and Jaime

It Tuesday morning here, wishing your the best for today appointment.  Hopefully there will be a plan for moving forward.

Thinking of Jaime today.  Remind Jaime not under play her problems.


----------



## kimmidwife

Oh Niks 
Your poor baby. Do you have tums over there? If you do after she vomits and rinses her mouth have her suck on one. It helps neutralize the stomach acid to reduce the damage it does. Also is she on a medication for reflux? If not she needs to be. That will also help reduce stomach acid and damage when she vomits.


----------



## DustyKat

Thinking of you both Niks and hoping all is going smoothly for you today. Good luck! 

Dusty. :heart:


----------



## Ands

Thinking of you both this morning.  Hope you get some much needed answers and / or plans.

Ands x


----------



## fosterschick

Good luck once again , finger crossed t nhs can get their act together n sort ur baby out xx


----------



## Mylittlesunshine

Hi niks, any news with the appointment
Been thinking of you both x x


----------



## Niks

What a day!  J had dentist first thing.  Her teeth are remarkably good!  Her gums very inflammed though, so booked to see hygienist.

Oxford DID NOT have her on list for appointment!  AGAIN! So bloody annoying so we had to go away and go back at end of clinic.

My guess is he really does not have a clue what is going on!  He wants to do pillcam but with endoscopy to put it straight into bowel, but couldn't say when!  He also wants her to see phychiatrist!  Yep - sure we've been there before!  He sugar coated it but basically thinks her brain could be triggering a vomit reaction!  Has anyone ever heard of anything so ridiculous!  AAARRRGGGHHH   :ybatty::ybatty::ybatty::ybatty::ybatty:

What about getting nutrition into her right now?  As her weight is dropping and she is vomiting all solid food?  Ermmmm - she could get anti sickness jabs from GP.  What - every day??  OMG  I could actually pull my own hair out.

Have suggested Jaime gets psychiatric appointment ASAP.  Hopefully he can report that GI's suggestion is just crazy!  Anyone else had these problems?

:ymad::ymad::ymad:


----------



## lsgs

Niks said:


> What a day!  J had dentist first thing.  Her teeth are remarkably good!  Her gums very inflammed though, so booked to see hygienist.
> 
> Oxford DID NOT have her on list for appointment!  AGAIN! So bloody annoying so we had to go away and go back at end of clinic.
> 
> My guess is he really does not have a clue what is going on!  He wants to do pillcam but with endoscopy to put it straight into bowel, but couldn't say when!  He also wants her to see phychiatrist!  Yep - sure we've been there before!  He sugar coated it but basically thinks her brain could be triggering a vomit reaction!  Has anyone ever heard of anything so ridiculous!  AAARRRGGGHHH   :ybatty::ybatty::ybatty::ybatty::ybatty:
> 
> What about getting nutrition into her right now?  As her weight is dropping and she is vomiting all solid food?  Ermmmm - she could get anti sickness jabs from GP.  What - every day??  OMG  I could actually pull my own hair out.
> 
> Have suggested Jaime gets psychiatric appointment ASAP.  Hopefully he can report that GI's suggestion is just crazy!  Anyone else had these problems?
> 
> :ymad::ymad::ymad:


Psychiatrists are the GI's go-to guys for when they don't know what to do and they want you out their hair. It's passing the buck. It happened to me when I was really sick in hospital, passing out etc, and I spent a year of my life paying £100 an hour to see a psychologist who eventually turned round and told me there was nothing wrong. By all means see the psychiatrist, but my advice would be if you and Jaime in your heart of hearts believe there is nothing wrong don't hang around too long. Trust your gut instinct. It can be troublesome to have a psychiatric diagnosis on your records. My psychologist wrote to all doctors treating me and made sure it was clear in my records that there was no diagnosis - she does work in court with people who can't get insurance payouts etc because they find out about a psychiatric diagnosis and use it against them.


----------



## kimmidwife

Niks,
We did go through this with our original GI. Ended up firing him and finding a new GI. We fired him after Caitlyn was in the hospital once again and we heard him telling another patient the exCt same thing he had told Cailtyn that it was in her head that the treatment he wS giving her should be working and if it wasn't it must be psychological. Maybe it really is time for you guys to look into that other doctor we had talked about a few weeks ago.


----------



## Niks

I KNOW that it is not psychiatric!  Just want to prove it really.  She is happy to go and talk to someone.

He is stumped because she is literally vomiting seconds after she eats.  He says this is not normal and that if it was a stomach emptying problem or anything else that she would not be sick so immediately.  He thinks that the food would stay in her stomach for hours!  Hmmmmm  I really don't think so!


----------



## Niks

Kim, I suggested that to Jaime on the way home.   She's exhausted and wants to wait  until pillcam has been done.  I just can't quite believe we are back to this point!


----------



## Mehita

London? Is that still an option?


----------



## lsgs

Niks said:


> I KNOW that it is not psychiatric!  Just want to prove it really.  She is happy to go and talk to someone.
> 
> He is stumped because she is literally vomiting seconds after she eats.  He says this is not normal and that if it was a stomach emptying problem or anything else that she would not be sick so immediately.  He thinks that the food would stay in her stomach for hours!  Hmmmmm  I really don't think so!


In that case be so so careful. My family all got caught up in the GIs suggestion of a psychiatric cause and eventually I began to doubt myself. When they called a psychiatrist in it was quite clear she had had a discussion with the GI and had made up her mind before I opened my mouth what was wrong with me. It didn't matter what I said... Everything I said was denial. For example if I said I thought I handled stress well, I just didn't realise I don't handle stress well. An answer for everything to build up a diagnosis she had already made her mind up about. So even when you say all the right things, if the psych has been appropriately primed by the GI  in my experience when they have made up their minds it's psychiatric it's difficult to go back, and the more you protest the crazier you look in their eyes. I had to change GI cause he was obsessed with me having a psychological problem that I had been evaluated for and didn't actually exist, but even with proof from my psychologist it didn't make one iota of difference. Dangerous territory you are being forced into by your GI IMO


----------



## Niks

Mehita - She doesn't want to move at the moment, she wants to wait until after Pill cam so hopefully that won't be too long.

Isgs - this is tricky.  She is slightly shocked that he wants her to see a psychiatrist!  But thinks if she doesn't he'll wonder why she won't.  I can see what you're saying though.  I think I might go with her and see her GP and see what he thinks.


----------



## my little penguin

Cyclic vomiting syndrome is cause by the gut/brain
But Neuro /go usually handles it and it can be bad.


----------



## Niks

MLP 

The symptoms of cyclic vomiting syndrome include:

*Severe vomiting that occurs several times per hour and lasts less than one week*
Three or more separate episodes of vomiting with no apparent cause in the past year
Other symptoms during a vomiting episode may include:

Abdominal pain
Diarrhea
Fever
Dizziness
Sensitivity to light
*The intervals between vomiting episodes are generally symptom-free. But some people experience mild to moderate nausea or abdominal or limb pain between episodes*.

Continued vomiting may cause severe dehydration that can be life threatening. Symptoms of dehydration include:

The bits I've highlighted aren't what she is experiencing.  It lasts a lot longer than a week.  And she has never really been symptom free??


----------



## my little penguin

One more thing
Allergic reactions can cause severe vomiting within seconds of eating as well as other gi stuff including d /constipation
Has she seen an allergist ?


----------



## Niks

No she hasn't MLP!  I am really worried that she's just going to be left to go down hill so much further before anything else gets done.  I will talk to her GP about referring to an allergist.  Really prefer that to psychiatrist!!  xx


----------



## my little penguin

On the cvs forums some have three week cycles or longer .
They thought DS had this at one point .


----------



## Niks

She can literally go months with persistent vomiting.  :confused2:


----------



## dannysmom

This does not sound good to me ... at all. I hope you can move onto new doctors/hospital soon. What did your GP think? Danny, in the beginning, was almost diagnosed with "school phobia" by one doctor. We went to psychiatrist (to prove the dr was wrong) and he agreed there was no reason to suspect a psychiatric cause to his illness and believed it to be some physical cause. He wrote a letter ... which was helpful. Danny is extremely mentally healthy. I had a similar issue with my older son, a dr claimed his symptoms were due to anxiety. Truth is my son did have anxiety but he also was suffering from a CSF leak. We just kept switching doctors until we found help.


----------



## kimmidwife

MLP,
I don't think this is what Jaime has because she has so many GI symptoms such as blood in stools and alternating bouts of diarrhea vs constipation. Caitlyn had a friend in grade school who had it and she actually was helped greatly by acupuncture. But she had no GI symptoms other then the nausea and vomiting. But of course I am not a doctor just a Mom! Here is a link to about cyclic vomiting
http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/


----------



## Dexky

FFS Niks!!!  What about the stones?  Did they do anything to see if there are any more in there?  If they missed the first dozen or so, maybe there's a dozen more!


----------



## Niks

Dex her GP is rushing Urology appointment through.  Oxford said she needed to be seen by Uro.  He laughed when she told him about the GI's request for psych referral.  He suggested they waited until after he's spoken to Oxford but Jaime really wants to get that idea ruled out so asked him to refer urgently.

GP is not liking the anti sickness jabs idea as he thinks she'll need at least two a day and it isn't solving anything.  

I just feel so helpless now, poor bugger really just wants to be able to eat normally.  She hates being so skinny because she thinks she looks like a boy.

GI yesterday said she still looked well!!!  She really doesn't!


----------



## Dexky

Maybe he should take her out for lunch!!


----------



## Niks

They just need to watch her eat literally anything!  GRRRRRR


----------



## Catherine

Sorry hear how the appointment went.

Have b12 levels been tested lately?

http://www.nutritioncrossroads.com/news/1/Could-You-Have-a-Vitamin-B12-Deficiency?.html

 These more common Vitamin B12 deficiency symptoms may be accompanied by nausea and vomiting, weight loss, lack of appetite and diarrhoea or constipation – this is usually Vitamin B12 deficiency anaemia.

http://www.nhlbi.nih.gov/health//dci/Diseases/prnanmia/prnanmia_signs.html

Other symptoms of vitamin B12 deficiency involve the digestive tract. These symptoms include nausea (feeling sick to your stomach) and vomiting, heartburn, abdominal bloating and gas, constipation or diarrhea, loss of appetite, and weight loss.


----------



## Niks

Hmmmm Catherine!  Her last B12 levels were within the normal range but this was at the beginning of August.  They were 262. She has suffered low B12 before this has caused really bad pins and needles.  This isn't happening right now, but will keep an eye on it!

She does have all the symptoms!  For some reason over here they will only retest B12 after 100 days!  If it is less the lab will refuse to test. :eek2:


----------



## littlemissh

B12 doesn't drop that quickly hence why tested less frequently. It would have to be severely low to be the cause of all her symptoms and having vomiting etc with low fit b12 is almost unheard of. I don't really think it will be the cause of her problems.

Only a hospital consultant would suggest your GP should give J twice daily jabs...how ridiculous a suggestion!!!

I think waiting for a pill cam is a good idea as long as it isn't too long. I would also suggest fairly frequent blood tests (probably 1-2 weekly) to check her potassium levels and sodium levels as they can drop quite quickly if persistently vomiting.

If the pill cam is normal, what did your GI suggest. I think a barium swallow would be a good idea as it will give a good idea of how far the barium gets, any obvious motility issues above the stomach etc. If I was vomiting so soon after eating, thats what I would be asking for, if it was a few minutes after I would want a gastric emptying study.

Your GP sounds great, you should write him a thank you letter for him to put in his appraisal file!....GPs have to bring all complaint and compliment letters to their annual appraisals now...and people hardly ever compliment nowadays.


----------



## Niks

Thanks LMH

I didn't know about GP appraisal!  I will definitely get a card and write one out for him.  He is great!

Our GI did not suggest anything after pillcam!  So I guess we need to wait and see.

I have just literally gone and got a lorry load of Fortisip for her!  Really don't think they meant to order that many!  lol. See if she can just take tiny sips at a time.  Got to be worth a shot.

One of her very first tests was barium, back with old GI, it didn't go anywhere!  Basically stayed in her stomach and after several x-rays she vomited it up.  Was not a pleasant experience as what ever was left solidified in her stomach and she was in agony!!!  But I think another test like that would be a plan xx


----------



## Sascot

Sorry to hear she really isn't much further forward. The fallback for a lot of docs seem to be the psychiatric referral - makes me so mad! When my daughter was in agony and they didn't know what it was they said the next step was a psych referral, "to help her deal with her pain" :ybatty:. Would rather they got rid of the pain!  Keep fighting, I am sure one of them will figure it out.
I just wanted to mention juicing.  I am currently trying to make myself as healthy as possible and have bought a juicer and recipe book. I was thinking it might be a good option for Jaime as it is all liquid so no hard digesting to do, plus it has many vitamins and micronutrients. Some of them are nice tasting such as carrot and apple, and she could keep it in the fridge and sip when she can.


----------



## Niks

Thanks Sascot, we do somes juicing.  Funnily enough I did mention this yesterday and GI thought it was a waste of time!!!  lol.  We will keep trying though xx


----------



## xX_LittleMissValentine_Xx

They will be saying its Bulimia next!


----------



## Catherine

My questions about b12 are this.

Jaime had loading doses for b12 in February,  doesn't a level of 262 seem low for someone who has had injections.

So is the level what her doctors would expect given she had injections?

Do you any other results for b12?

Low/normal b12 is a symptom that the body is not producing b12 properly.

Did her symptoms improve after the injections?


----------



## Niks

Catherine - yes she had loading doses back in February.  The symptoms of really bad pins and needles and numbness went pretty quickly when she had the loading doses.

Her other symptoms didn't though.  So I guess what she is going through right now is just part of what ever is wrong with her!

I do agree though her B12 levels seem to get lower every time she's tested, and am wondering whether she needs to keep having B12 jabs to keep her levels high enough.

Her doctors are not worried about her level right now as it is within the normal range, although I have read some things that David has put on here about B12 levels and he recommends that levels should ideally be higher.


----------



## Sudsy

I am sorry this nightmare is continuing and hope that the doctors soon figure it out and she is feeling better.....You are both in my thoughts.


----------



## upsetmom

Niks just wondering how was J originally diagnosed with crohn's?


----------



## Niks

She initially had so many different diagnosis! Was from inflammation seen on colonoscopy and good reaction initially to pred. 

crohn's diagnosis changed pretty quickly, although it is still on her GP notes!!!


----------



## xX_LittleMissValentine_Xx

Why did they suddenly say it wasn't crohn's then? 

Crohn's can hide pretty well, they know that. I would have thought a diagnosis would mean they were fairly sure about it...??


----------



## Niks

Her GI at the time found coeliac tendencies on biopsies, so insisted that was what was wrong Holly. I don't think they ever really found any concrete evidence of crohns :-/ xx


----------



## kimmidwife

I was wondering about that as well. If they thought it was Crohn's and she initially responded so well to prednisone then maybe they need to look back at that again. Maybe the current GI needs to review those original test results. Does he have copies of everything from them?


----------



## DustyKat

Oh Niks...:ghug: 

Just another thought to throw into the mix...probably not what you need though! :eek2: 

Failing all else perhaps obtain a neuro consult and look into vagus nerve dysfunction? 

Like any disease/disorder it has varying degrees of affliction and Jaime does have some of the symptoms. Certainly vomiting, pain and persistent constipation are amongst them. 

Interestingly there have been a few studies regarding the vagus nerve and its role in inflammation and whilst Crohn's doesn't appear have a direct link with the vagal nerve as such it would seem that for some with UC and autonomic nerve issues it has a direct link with vagus nerve dysfunction: 



> Abstract
> Autonomic nerve function was evaluated in 40 patients with total ulcerative colitis and in 25 patients with irritable bowel syndrome by three established non-invasive tests based on the heart reactions to deep breathing (E/I ratio) and tilt (acceleration and brake index). None of the patients were diabetic. Most of the patients with ulcerative colitis were clinically and biochemically inactive; 10 had previously undergone colectomy. The results were compared with a control group consisting of 56 healthy individuals and 33 previously investigated patients with Crohn's disease, 45% of whom demonstrated autonomic neuropathy (AN). Patients with ulcerative colitis had a significantly lower E/I ratio than controls in age-corrected values, indicating vagal nerve dysfunction. Altogether, 35% had signs of AN. In patients with irritable bowel syndrome 36% had evidence of AN, a figure in agreement with observations from other investigators. We conclude that AN is common in patients with ulcerative colitis, regardless of disease activity and previous colectomy. In contrast to a predominantly sympathetic dysfunction in Crohn's disease, AN in ulcerative colitis was vagal.
> 
> http://www.ncbi.nlm.nih.gov/pubmed/8362220


Dusty. :heart:


----------



## Sudsy

I've been thinking about this, and my $.02 is that, the next time she's admitted to hospital, you try to convince her to STAY there.  It is a lot harder to ignore how sick she is if she's right in front of them throwing up everything she eats......Maybe all the tests could get done ASAP if she in inpatient.  It sounds like she really hates being inpatient and tries to get out as quickly as possible, but I don't think that attitude is helping much.

Good luck!  I hope they this gets figured out soon.


----------



## Niks

Hmmm. Getting Jaime to go to hospital at all is a massive battle. I do think you're right though!

Dusty - definitely worth looking into nerve dysfunction!

Jaime had two appointments through today. 31st October for different Gastro Clinic in Oxford!! With TOP consultant! And 6th November endoscopy pillcam!

My guess is that her GP has been on the phone!


----------



## DustyKat

Woohoo! Now that is a fab update Niks!  

Sending truck loads of luck that you get solid answers! :goodluck: 

:mademyday: 

Dusty. xxx


----------



## Niks

Isn't it! . Can hardly believe it!! Way to go Dr F (GP) :dance: :dance: :dance:

So good to have someone on her side xx


----------



## DustyKat

Soooooo happy for you both Niks. Your persistence has paid off, well done mum! 

Dusty. :Karl:


----------



## Sascot

Great news!!


----------



## Farmwife

Ya!


----------



## my little penguin

Woohoo!!!


----------



## kimmidwife

So happy to hear some good news!!!! Yay for her GP!!!!!!!


----------



## Niks

Not such good news!!  Had letter cancelling new GI appointment, wanting to wait until after pillcam test...  

When I cnecked out Pillcam instructions it said it  would take 15 minutes!  After e-mailing to check that it would be inserted through endoscopy, have received an e-mail back today saying prodedure cancelled as it was booked for her to swallow!  GRRRRRR.  Why is nothing ever simple!


----------



## pops14

dead cert she will vom it back up how silly, can you email them back to get them to change,  just a thought have you tried either omeraprazole or Ranitidine she may have gastritis in stomach and that is making her throw everything back up, Omperazole is only under presciption but you can buy Ranitidine over the counter. or gaviscon may help, when our eldest had very bad reflux as baby had weekend of vomiting everything, happened to speak to out of hrs GP whose daughter had just been diagnosed with reflux told us to try liquid gaviscon in his milk did not look back, till we started solids then he vomited anything with bits in they told us due to reflux he has very sensitive gag reflex, not saying this is Jamie's problem am convinced she is obstructing but one of those meds may make her life easier till test. katie


----------



## dannysmom

I hope you can get another date for the pillcam soon. I am glad they are placing it in the duodenum. I also hope they can turn around the pillcam results quickly - as that takes longer than other imaging.


----------



## xX_LittleMissValentine_Xx

When does the camera start taking pics though...? It will prove a point maybe if she does vomit it straight back up. Although obviously not ideal!!


----------



## Sudsy

LMV: that would be some seriously expensive barf!!!!!!


----------



## Tesscorm

Niks, I'm just catching up and just can't believe the obstacles you and Jamie continue to face!!!  Unbelievable!!!

I just want to touch back on something mentioned a couple pages back - allergies.  When my kids were young, anytime I tried to give them ANY liquid medication, they would vomit instantly!!  It didn't matter what brand, type of med - ibuprofen/acetaminophen/etc., liquid antibiotic, flavour, how I gave it - fast/slow, spoon, etc.  And, as you described, it wasn't sitting in their stomach because it was instantaneous.  Also, could not have been psychological because it started from their first dose of meds, when they were 2 months old, when I was told to give them tylenol with their first round of vaccines.  We didn't do allergy tests at the time but ped said he thought they were allergic to some ingredient such as a sweetener or something.  The allergy to some common 'liquid only' ingredient makes sense because they had no problems with aspirin suppositories nor the pill versions when they were a bit older???  

While allergies are not likely to be the sole reason for her problems, they may be adding to them and creating confusion re her symptoms as well.  I'm not sure if it works this way but, I'm thinking, if she's allergic to A, B, C and is constantly vomiting because of allergies, even if she then has D (to which she has no allergy), she may still vomit because everything (stomach, esophagus, etc.) is inflamed/irritated from the vomiting caused by A, B, C????  

IDK if there's any value in what I'm suggesting but the way you described her instant vomiting is just like what happened with my kids.

Also, re the GI's comment that she looks well! :ymad:  Please keep a picture of Jamie taken before she was sick and a recent picture - have them tell you she looks well after looking at the pictures! :ymad:

:ghug: :ghug:


----------



## xX_LittleMissValentine_Xx

Well, its the hospital paying for it!


----------



## Niks

LMV - it does seem like a complete waste of a really expensive test!  She hasn't heard when her new test is going to be.

Pops - yes she has tried  omeraprazole.  It really didn't make much difference.

Tess - alergies could be a problem?  I just don't know where to go with this!  I am really hoping for pillcam quickly so that they can at least see what is going on in small bowel.  

Her GP called and asked to see her yesterday.  He has spoken to Oxford and they have prescribed ondansetron orodisp for vomiting.  GP said that they can only be prescribed by the hospital and are normally used by chemotherapy patients.  She's not allowed to use them every day, but they do work!!!


----------



## Mehita

My son was taking Zofran (Ondansetron) when he was having his vomiting spells. Unfortunately for him, they didn't work well because he had a stricture and the food had no where to go but up, so maybe if the med IS working for Jamie it could mean strictures are not her problem. I know that sounds kind of backwards, but it's at least maybe ruling out something....? Just grasping at straws here.

And I agree with Tess, find a old photo of a healthy, happy Jamie and bring that to the next appt. I'm guessing the difference will be jaw dropping.


----------



## my little penguin

Ds has standing orders for zofran as well.
we give as needed for his nausea and if we catch it in time it stops the vomiting.
if not at least it stops the vomiting from being repeated.


----------



## Niks

She has always had normal ondansetron, which doesn't work. She took the new one again yesterday and it didn't work :-/.  She's vomiting a lot of blood at the moment. GI is aware and thinks it's a stomach tear again.

Really hoping pillcam gets sorted soon!!!


----------



## kimmidwife

Niks,
Thinking of you guys and wondering how Jaime is doing.


----------



## Niks

Thanks Kim.

We have had another horrible week.  Getting kidney pain again and peeing pink.  After back and forward to the doctor she ended up in Surgical Assessment on Tuesday until 2.00am, finally was allowed home but had to return yesterday morning.  

After ultrasound scan they decided that the stones are not obstructing her kidneys, and wanted to admit for pain relief and antisickness (vomiting worse than normal, even for her).  She decided to go home on the promise she would go back if anything got worse.

So here we are again, crazy pain, not holding anything down, due to what ever is going on with her bowels and now kidney stones again.  She has not passed them yet!  

Does anyone know what is the normal or longest time it takes to pass kidney stones? 

Still no new date for pillcam!


----------



## Sudsy

Niks, she MUST get admitted.  There is no way around this.  It is truly an "out of sight, out of mind" situation, and every time she goes home she is no longer on the top of anyone's list to deal with.  She is terribly ill and the only way to QUICKLY get the workup she needs is to have her inpatient.

I am a nurse and the mom of two kids with Crohn's and I can't say this strongly enough.  Maybe you can show her this?  (I'm sure I'm not the only person who will feel this way).

Since she is over legal age, I know you don't have as much sway as those of us with younger kids, but ENOUGH of this!  The best chance of figuring out what is wrong and how to get it right is her getting admitted.

Sending support your way.  May this nightmare soon be over, and with your "baby" on the road to good health.


----------



## Niks

Sudsy - I absolutely agree!!  However her doctors don't.  They do everything in their power to keep her out of hospital.  Which to be fair is what Jaime wants.  She is now under the Urology team which is a start, but the Gastro team in Oxford feel they have exhausted most tests.  (Still waiting for pillcam).  I really don't think they know what to do with her :ybatty::ybatty::ybatty:


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## kimmidwife

Niks,
Just sent you a PM with more details. Take a look at this link. So done told me about it and her child's symptoms were an exact match to Jaime. Since they have been treating him for this he has improved amazingly over the last several weeks.
http://www.medscape.com/viewarticle/573182_3


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## xX_LittleMissValentine_Xx

Oh, I agree she really has to be admitted Niks! 

She should be refusing to leave!


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## Niks

Holly, she is never going to do that.  She has absolutely no faith at all in hospitals.  She really doesn't think that anyone is going to work out what is wrong with her.

She has GI appointment on 5th November, pretty sure nothing will change.  She hasn't even had her pillcam test!  She has a Urology appointment within 2 weeks also.

She also has a psych appointment on 2nd.  Although he spoke to her on the phone and is pretty sure that he can't help!  :ybatty:


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## happy

Niks, I just wanted to send you some support. :ghug: I imagine that you are just about exhausted from having to deal with these issues for so long. I hope that you have got some local support, that you are making sure to take good care of yourself and that you are doing some things for yourself to relieve the stress.

All of us keep trying to make suggestions as to how to help because we just cannot believe that you and your daughter have to live like this, but I am sure that sometimes it seems like we are trying to tell you what to do and that we are saying that you are not doing enough to help your daughter. 

Please know that you are obviously a very caring mother who is trying to support her adult daughter without taking away her independence. That is not an easy job; however from what I read, you are doing it beautifully. Your daughter is very fortunate to have your support.

May the universe soon show a clear path to you and your daughter for the next steps in her journey to health.


----------



## dannysmom

... and poor Jaime has been admitted several times and they end up with nothing much ... right?  HUGS!!!  Do they think Jaime is dehydrated and that is contributing to kidney stones?  I am just wondering if some IV fluids has been discussed to help with symptoms when her dysmotility is bad.


----------



## Catherine

Hopefully the Urology can provide answers to her issues.  Maybe it worth asking them to try and look into daughter case with a new set of eyes.  Not necessary having tests redone but for them to form their own opinion on them.

Hopefully you get what trying to say.  We make the mistake of not requesting our new gp get copies testing (ultrasound) done by our previous GP.  This delayed Sarah dx by between 4-6 months.


----------



## Niks

Thank you everyone!

Yes Jeanne.  Dehydration is certainly not helping towards the stones.  The Doctor she saw earlier in the week said it is really unusual to have two episodes of stones in 3 weeks.  But she thinks with her persistant vomiting and dehydration this will not help.  She didn't think it was the cause but certainly was making things worse.  Her new Ondansetron Orodisp was meant to help with this.  

Yesterday she was only vomiting after food but today, like Tuesday and Wednesday she is just vomiting so much it is crazy even for her.  I guess it is hard to know whether it is from bowel or kidney now!  :eek2:  Yesterday only pee'd once.  She did go this morning, getting her to seive it to catch any stones as requested and was bright pink with lots of small blood clots.

Urrrrggghh, poor bugger, enough now!


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## kimmidwife

Niks
sounds like she needs iv hydration asap.that is dangerous to be peeing so little.please encourage her to go in!


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## Niks

Around 6pm Jaime got a call from the hospital and she has a nurology appointment on Tuesday!  She won't go back in Kim, at the moment she is managing to keep some fluids down.  Hopefully she'll hang on until Tuesday!


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## CarolinAlaska

Poor Jamie.  I hope there is an end to this nightmare right around the corner.  Neurologists tend to be pretty thorough, but I don't know what they're looking for in her case.  Is her renal function okay?  2 week follow-up with kidney stones and acute vomiting.  It's a nightmare!


----------



## Niks

It's urologist Carol! My phone must have done some funny spell check!!! Keeping an eye on her though, her eyes do have a yellowy tinge!! :-/ urgh! 

Hopefully will look better today xx


----------



## happy

Hi Niks,
Take her back in. The yellow eyes could be a symptom of serious problems starting in her liver. Here are a couple of links: http://www.nhs.uk/conditions/Jaundice/Pages/Introduction.aspx
and 
http://www.mayoclinic.com/health/urine-color/DS01026/DSECTION=symptoms
Good luck.


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## kimmidwife

I second Happy, Niks take her is and don't let her leave until they figure something out!


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## my little penguin

> 2013-05-31 10:18
> Bilateral multiple renal cysts refer to a condition,in which more than one cysts grow in both of kidneys.In general,they are benign and cause no symptoms.However,as the the cysts enlarge,the patients may experience back and flank pain as well as nausea.
> As the cysts enlarge,they will compress the adjacent kidney tissues,thus resulting in kidney pain.As kidney is located in the back area,the patients can feel painful in kidney area.Additionally,as the cysts enlarge,they can stretch the renal capsule,thus resulting in kidney pain.These are two major attributable causes of back and flank pain in bilateral multiple renal cysts. Another possible cause of the pain may be kidney or cyst infection.The infection also commonly causes blood in urine.
> Nausea is a big problem for people with bilateral multiple renal cysts. As the cysts enlarge, they may squeeze gastrointestinal tract, affecting the digestion and absorption.This condition mainly occurs in the early stage of renal cysts. As the disease progresses, the kidney function will decrease.One of important role of kidneys is to filter blood and eliminate wastes from body. If the kidneys fail to perform the function, it can lead to high level of uremic toxins in body. These toxins can irritate the gastrointestinal tract, leading to nausea.
> As there is a variety of possible causes of back and flank pain and nausea in bilateral multiple renal cysts. If you are experiencing these conditions, you should firstly find the specific causes.
> As the persistently enlarging of the cysts is the underlying cause of back and flan pain and nausea in bilateral multiple renal cysts.Therefore,to control these problems completely, the primary goal of treatment is to shrink the large cysts and stop the cysts from enlarging. If these treatment goals can be obtained, the associated symptoms will be controlled fundamentally.




From:
http://www.kidneyabc.com/kidney-cyst-symptoms/1700.html



Has she had an ultrasound of her kidneys ?

Maybe something to ask for


----------



## Niks

She wants to wait until tomorrow, and see what Urologist thinks!  She only urinated a tiny amount yesterday, but did go this morning.  Still very bloody. Lots of small blood clots too.  No stones!

MLP - thank you for info!  She has had an ultrasound scan, which showed stones were not obstructing kidneys, but I wasn't with her so now sure what she actually saw.  I don't think cysts were seen at all though.  Hopefully will find out more tomorrow!


----------



## Niks

Urologist not at all happy with the amount of blood in urine and has scheduled her for an urgent Cystocopy.  She is not impressed because has to have a GA.  I am not sure why she would need a GA for a procedure like this?  

They kept referring to 'operation'.  It isn't really is it, it is just a procedure, so confused with her having to go under anaesthetic.

Anyway, she has already had her pre op, so as soon as appointment comes through she is good to go!  As it is urgent she should get her appointment 'very soon'.  They could not clarify exactly what this means!


----------



## kimmidwife

Nik,
I don't know why she would need GA for a cystoscopy unless they think they might need to do some kind of treatment as well? They are not fun though so maybe it is not so bad that she won't feel it. It will be painful to pee after for at least 24hours make sure they give her something to help with that.


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## pops14

If it was me i would definitly go for GA If you think about what they are doing and where the camera is going let her have it painfree poor lass had had enough to cope with, I say hurrah for Uroligist first consultant to take her seriously maybe you are getting somewhere at last just need Top Dog Gastro to do the same anynews on pill cam.


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## Niks

Pops - still no news on pillcam!

I guess I didn't really think about it but yes it would be painful!  It probably is better for her to go under GA.


----------



## xmdmom

"very soon" like later today or like in a week?


----------



## Niks

Hopefully within a few weeks!!!!  xx


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## xX_LittleMissValentine_Xx

Agree with what both have said. Due to the pain, and in case they want to do something while they are there. 

Both my operations have been "we will have a look and if we see anything" and both times they have. Admittedly they were peri-anal but they probably have similar thoughts.


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## kimmidwife

Niks
she should be seen faster then a few Weeks. that would be crazy if they let her stay like this. if you don't have a date for as soon as possible by tomorrow I would encourage you to call their superiors and tell them they need to get her in asap.is she urinating anymore today?


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## Trysha

I had a cystoscopy with only a numbing gel,did not feel a thing and was able to see results first hand It was a tumor causing the bleeding.
Three months later cystoscopic surgery to remove the tumour under
general anesthetic and with intravenous antibiotic cover.
Never felt anything from the surgery and made uneventful recovery, only minor bleeding for a day and no discomfort at all.It was same day surgery and you can't leave recovery until you pee.Quite an experience.
The one negative was an allergic reaction to the IV pain meds.
Never needed the Tylenol3. Never looked back.
The tumour was non malignant.
Hope they find the cause for Jamie----it is a nightmare without end seemingly for you both.
Feel better soon.
Hugs and best wishes
Trysha


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## Niks

No Kim, she's not really peeing much.  :eek2:

Hopefully we'll hear back really soon !


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## Sascot

Glad they are doing something. Definitely better having a GA - it is not a pleasant procedure, so best to be asleep! Hope you get a date soon.


----------



## DustyKat

Thinking of you Niks and hoping more than anything that Jaime's appointments happen very, very soon! Bless her and you too! :ghug: 

Usually a urologist will decide on a local or general anaesthetic based on symptoms. Perhaps the fact that they feel her symptoms warrant an urgent booking is the reason for the GA? 

Sending loads and loads and loads of luck your way! :goodluck: 

Dusty. xxx


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## xmdmom

Can't believe that you are waiting....  Have they checked her kidney function lately (blood test BUN/CR)? I keep seeing that she's only peeing a little which suggests dehydration or kidney impairment depending how little "a little is".

[[[HUGS]]]


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## Niks

Thank you all!

Not sure if they've done bloods to check kidney function!  They certainly didn't at her appointment, but when she was in and they did scans, they did bloods then.  

xmdmom - She literally only peeing little drops, but after visiting GP she was told that it was down to dehydration.  So now taking Ondansetron Orodisp regularly, they don't work completely, but she does hold food and drink down much longer.

She said today she had no blood in urine!  That's the first time in weeks, so have everything crossed that what  ever it was is settling down.


----------



## vtfamily

Niks,
You've been at this for a year (maybe more).  What piece of the puzzle do you think the doctors think is still "missing?"  Have they ever said "it almost looks like it could be _____, except _______ (symptom) isn't present?  It is so frustrating that everyone here, and even the average person on the street, can tell what Jamie is going through is not normal and that she needs medical attention.  It is frustrating, infuriating that you have not been able to connect with a doctor who is willing to do extra digging to get to the bottom of the problem.

My heart continues to go out to you both!!!
Cheryl


----------



## CarolinAlaska

I don't think your medical system knows what "urgent" is supposed to mean.  To me, urgent means admit her now and get it done.  Do you have a date yet for cystoscopy?  I'm glad blood has stopped.  How much weight has your daughter lost in the past year?  Do you have any pictures to post from a year ago vs now?


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## pops14

Niks,
If I was you I would get in touch with consultants secretary if you have not got appointment through today,also whats happened about pill cam appt that was weeks ago ring them up because they canceled the last one they may have put it back to routine appt time and you will be waiting ages, appointment clerks are the worst. i think urology problems could well be brought on by her gut problems so need answers about that.
Katie


----------



## Niks

She has had a horrible time!  Poor thing 

Yesterday she was in so much pain at work they called me and told me that she'd had 3 seizures and were with paramedics who were taking her to A&E.

She did not have seizures but was in so much pain that was shaking from head to foot.  Her pulse rate was 190 :eek2:  I got from work (30 mins drive) to the hospital before the ambulance!  She was a state.  Sucking on entonox like crazy.  She had their attention and was seen immediately given high doses of pain relief and wanted to do a CT scan.  As she has already had 2 within a year, not massively impressed with this and the consultant agreed.  They know that the problem is a stone which she is having trouble passing.  She had fluids and managed to pee, which seemed to move it a little and her pain eased massively.

No blood in urine.  In fact it was so clear it looked like tap water!  

I have no contact number or name for urology to call them to hurry up procedure!  It is so frustrating, unfortunately the appointment was made over the phone and she has not yet had a letter from them.  Urrrgghh.  The doctor she saw yesterday was lovely, but had no way of finding which team were treating her.  

She does have appointment in Oxford this afternoon.  I will be pushing massively for him to hurry up on the pillcam procedure.

Carol - Her weight in August had gone back up to 57kg she now weighs 50kg.


----------



## Niks

GI has promised she will have pillcam within 2 weeks!  Although he will be 'very surprised if it is not normal'!  Urrgghh, after sitting with him for an hour, I really do feel like we have just gone round and round in circles.  He feels that Jaime's symtoms are IBS and severe constipation.  

He did suggest that there was an IBS specialist in London and ummm'd and arrrr'd about whether that would be a good idea.  Would an IBS specialist be a good idea?  I really don't know!

Just as we were leaving(literally just going out of the door) and my head was like mush and after an hour of him not explaining why Jaime is no better.  (It could be a cycle thing) - literally that is the best he could come up with. He said her bone density scan results came back with abnormal with -2.9 on spine score.  To be perfectly honest I did not really ask what this meant or why it would be like this as I was reeling from the pointless appointment!


----------



## pops14

oh niks I so feel for you I had this but to a much lesser degree last year with louis diagnosis but finaly I pushed and got a scope and both consultants said well done for pushing as they were suprised at diagnosis, i was not!! 
Good news pill cam soon and hopfully cystocopy your poor girl needs some answers as do you, just dont give up.

Katie


----------



## dannysmom

I think following up with an IBS specialist is worth pursuing (along with your current plans). I am not sure what they will do exactly  - but nothing seems to be helping so far.


----------



## Sascot

I agree seeing the IBD specialist is a good idea alongside the urology investigations. The docs you have seen obviously have no idea what's going on, a specialist sounds like the way to go. You just need to get to someone that can actually help!


----------



## pops14

niks yesterday my sister crohns for 20yrs had the results of an endoscopy back she has been having months and months of symptoms like obstruction when she eats it sits in stomach only to be vomited back few hrs later abodominal pain numerious gastric bleeds, bloating amazing gut rumbling, we both asumed it was her crohns but endo showed Nodular Duodenalitis.

 I had to google it  sugest you do too, hers has caused her phyloric sphyinter "the valve that controls the stomach empting" to be so ulcerated and inflamed its delaying the food passing though to rest of gut, her duodenum was just as inflamed and that is were she is bleeding from, bizarly no signs of crohns. exabated by stress and can be caused by an bug and simply treated by antibiotics. have a read and see what you think it could be an answer, pill cam will show it up as duodenum looks nodular and swollon " some thickening in proximal duodenum" katie


----------



## fosterschick

Niks just catching up on this , oh my ur poor girl , fingers crossed she gets betta asap and she gets pill cam soon . Flipping nhs don't seam to want to diagnose anything except ibs ! I even have a writtn letter to my gp that actually says that they want to leave me alone now until crohns 'shows itself clearly ' ! Flipping silly ur poor girl is so much more poorley then me . Wen are they going to realise it quality of life she's just a young girl god bless her x


----------



## xX_LittleMissValentine_Xx

Hopefully the IBS specialist will be helpful, whether it is IBS or not. They might be able to point you in a different direction?


----------



## kimmidwife

Niks,
Hi sorry I was off for a few days. I wanted to agree it can't hurt to see the ibs specialist sometimes another set of eyes may help bring so e new ideas.


----------



## Niks

Think you're all right.  She is going to see GP to get him to talk to Oxford to get this hurried up.

Any one got any ideas about the bone density scan?  He said she didn't have osteoporisis, but did have osteopenia.  This can lead it osteoporosis and from what I can see probably needs monitoring and calcium supplements?


----------



## kimmidwife

Niks,
She needs calcium and vitamin D supplement. I would look for a liquid supplement as it is better absorbed and easier to tolerate. She also needs to try to increase her weight bearing exercise as much as she can tolerate it. This is very important to take care of and monitor. She is currently in the phase of her life where she is building up her bones. At age 30 you lose the opportunity to build and simply maintain.


----------



## Niks

Thanks Kim.  He really did not explain any of this!  :confused2:


----------



## happy

And the osteopenia gives further evidence that she has some kind of problem with absorption of nutrients, otherwise it would not be developing at her age. Therefore IBS is an unlikely explanation for her symptoms.

Did she have any liver function studies done when she started turning yellow? 

I wonder if drawing up a page with all of her symptoms and positive test findings on one side of the page with the headings of IBS, IBD and Other in columns on the other side of the page would help you to be able to go through everything with the IBS specialist easily and to get your questions answered. That way the doc won't be overwhelmed with all of the info and you can keep track of what is significant. As you go through the symptoms you put a check mark in each column and by the end you might have a map of what to do next.

Good luck. i hope the appointment happens soon.


----------



## Niks

Thanks Happy.

I shall have everything down in date order to take to any new Doc.  Her bloods generally come back. Just ferritin and b12 on low side.  Potassium has been out before but liver as far as I'm aware is ok.  Her yellow tinge only lasted a couple of days..


----------



## pops14

hi niks

what does her ESR and CrP look like they are the specific infamatory markers which give an indication how much inflamation is going on in body they are not organ specific only test to show inflmation in gut is Faecal Calprotectin amazed if gastro con not asked for it.
these tests were the only thing apart from me ranting that made drs keep looking with Louis.


----------



## B Baker

Hi Niks,

I'm so sorry your having to go through this, your poor daughter.  It took me 8 years to get diagnosed and many battles with doctors/changing hospitals to get there.

I felt I needed to respond to the latest update of yours on her -2.9 T score this is I'm sorry to say osteoporosis not osteopenia. Anything below -2.5 is classed as osteoporosis. The same happened to me, all the years of not being taking seriously, whilst not being able to eat half the time and then the obvious malabsorpbtion cost me my bones!!

She needs to be referred to a rheumatologist for this, to decide if she needs treatment or not. I'm not on any treatment at the moment, I'm 31 and trying to do as much weight bearing exercises as I can.  I have my next dexa scan next year and will re-evaluate then.

I know its stating the obvious but even if she was able to do weight bearing exercises, it not going to do much all the time the underlying problem is not being sorted.  Because my bones where so bad for my age, the rheumatologist thought I had coeliac as well as crohn's.  I think I remember reading they suspected that at first with your daughter too.

I know others have said it but I would get your GP to refer her to St Marks, this is not ibs and it makes me soo mad when they say that ,when its screamingly obvious it isn't.  Sometimes you need to go to the top specialists to get answers. :ghug:


----------



## QueenGothel

Yellowing???  I would be concerned with liver function as well.  Possibly a gallstone blocking a bile duct.  Not something to mess with at all!  I wouldn't wait until her liver numbers are down.  I would request an MRE rather than a CT scan.  It will show any liver issues as well.

Rowans recent diagnosis of PSC which is a very devistating diagnosis, her liver numbers are completely normal.


----------



## Niks

Pops, her CRP is always normal!  Her GI has never asked for FC, but we did one privately and was also normal!  So I guess no inflammation.

B Baker - thank you for info.  He said it wasn't osteoporosis because it is only her spine levels that have come back abnormal.  I think there were two other numbers that were in the normal range?  Does that make sense to anyone?  I am confused by it all as it was thrown at us as we were leaving and nothing really was said about what to do, or who to see about it!

Mary - Rowan's diagnosis is devastating .  Pretty much all of Jaime's bloods are normal.   She is in Swindon at the moment after another really horrific day of absolute agony.  Swindon I know will not do an MRI!!   So frustrating.

The problem is once the pain has eased she gets so fed up of being there and wants to go home.  This is the third time in four days where she has been completely unable to cope with the pain and has been taken to A&E.  Twice by ambulance.  In 2 hours of pure hell she passed out cold 7 times.  It was almost a relief! 

I left her after having a second x ray.  But so far nothing is making any sense.  The surgeons are not really getting that her bowel pain is always there.  Her back and groins pain is new and what is really causing the problems at the moment.  It starts upper right back and shoots down to her groin,

Her urine was clear today!  They don't even think she has stones!!  What on earth could be causing this horrific pain??


----------



## kimmidwife

Niks,
I am so sorry she is having so much pain. Maybe it really is time to look into a referral to St. marks. It seems like this is simply beyond the scope of these other doctors experience.


----------



## pops14

Niks, you do need to get her to stay in if that what the drs want, nothing gets the drs back up is an paitient who self discharges, its classed as a big no no and l have seen patients labeled as time waisters , Louis CRP has always been normal but his ESR was raised, drs like to work to facts so the crp being normal has proberly put her in the not IBD bracket, which is silly as our gastro nurse says they have several patients with normal bloods and still active desease. they cant let her stay in this pain hope fully if she stays in they can speed the tests up you can jump waiting lists as an in patient so they may be  able to get cystocopy done.
Katie


----------



## Niks

Kim - I think you're right!!! 

Katie - it is more likely to be the other way. She knows that what ever it is is likely to come back and she can't cope at home with this pain. But hospital seem like they want to discharge her today!! I"m at work so can only go on what she is saying.

They are monitoring urine output and after 3 bags of fluids and drinking too only a little urine so far. She said she had 'whit bits' floating in it today , which she hadn't noticed before. Oh just so exhausted with continuously fighting the hospital!!!


----------



## pops14

Oh Niks this is so bad makes me really cross as an exnurse that this is going on what are they playing at, how can they think of discharging her if she is not passing much urine and no answer to cause of pain she needs MRI have they given you any idea as to cause, just keep taking her back in poor love to faint from pain is shocking.  I agree with Kim but that referal will yet again take time she needs answers now, I feel like screaming too you poor thing appart from being frustrating it must be scary too. Keep fighting Hun thats all you can do.
Katie


----------



## kimmidwife

Niks,
I am sorry with all you are going through. It is so frustrating. Please pursue the St. marks!!!!!


----------



## Niks

She's home!  She saw a Gastro Doctor and not Urology!  Think things are getting very confused.  He thinks if she has any bowel dysmotility or slow bowels it is likely that her kidneys are slow too.  He said the muscles are very similar.

He was very sympathetic and this that she needs to be referred to a pain management team.  This has been suggested so many times before!  
He sent her home with Diclofenac 100mg suppositories.  Yesterday after peeing and having one of these the pain did ease.  My guess is it was probably peeing that did it, but I guess it is something else she can try when things get really bad!

She is going to GP on Monday with a  list of things!  

Bone Density - not sure if he has even had those scores, and what should she do, if anything.

Referral to Pain Management Team.

Referral to St Marks/Oxford suggested Doctor in London.

Possibly increasing Butrans patch size, Dr today thinks she should.

Now to get through the weekend with no more hospital dashes...  Have EVERYTHING crossed.


----------



## my little penguin

That is ridulcous
to treat the pain but not fix or know the cause.
I so hope you get a path forward soon.


----------



## Niks

MLP - Tell me about it.  It feels like we are just bashing our heads on brick walls and for poor Jaime just more and more things seem to be going wrong :ybatty:


----------



## B Baker

Sorry your nightmare is still continuing and people seem to still want to only treat her symptoms and not get to the actual problem.

My spine was -1.3 and my hips were -2.5 in other words hips osteoporosis, spine just in the osteopenia bracket and I think my neck was -1.3 too.  Anything under -1 to -2.5 =osteopenia, anything under -2.5 osteoporosis & above -1 is normal. I'm not a doctor but in these circumstances and him being a 'gastro' doctor not a rheumatologist, I would push to see one. The more 'specialists' involved in your daughters care the better.

Also I forgot to mention my esr and crp always came back normal too, I know this is a big reason it took so long for me. 

I really hope this nightmare doesn't continue for much longer :ghug:


----------



## my little penguin

> Median arcuate ligament syndrome (MAL) or celiac axis compression syndrome (CACS) is a rare etiology of chronic abdominal pain. Traditional treatment of this syndrome is surgery. We report a case of median arcuate ligament syndrome with a severe compression of the celiac trunk, which was successfully treated by angioplasty with stenting.



From:
http://www.hindawi.com/crim/vascular.medicine/2012/129870/


Please ask about a Doppler ultrasound of the major blood vessels in the abdomen .


----------



## Niks

Blimey MLP - have never heard of this, but certainly worth asking about!  Thank you xx

She has had a call today to tell her Potassium Levels are low.  This has happened before but when she was in hospital.  I don't know the levels, she didn't ask, but they want to re - do bloods next week.  

Is there anything that would help with this?  She now has calcium supplements.


----------



## kimmidwife

She could try eating bananas they help with potassium.


----------



## dannysmom

Did they check her magnesium too? Low mag can cause low potassium. You can take magnesium and potassium supplements. Potassium supplementation needs to be monitored closely as you do not want to go high.


----------



## Niks

Thank you ladies.

Nothing was said about Magnesium.  She still isn't keeping much down, so guessing that could be the problem, but bananas are a good shout.

Will get her re-tested next week.  Hopefully will pick up.


----------



## Crohn's gal since 1989

kimmidwife said:


> She could try eating bananas they help with potassium.


Dried apricots are high in potassium too!


----------



## Catherine

High potassium foods.

http://www.healthaliciousness.com/articles/food-sources-of-potassium.php

Half way down the page there is a list of foods and their potassium levels

http://www.fatfreekitchen.com/nutrition/potassium.html


----------



## Trysha

A handful of Epsom Salts in a hot water bath helps keep up magnesium levels and is relaxing too.
Potato is also a potassium rich veg.
Feel better soon
Hugs
Trysha


----------



## Sudsy

Hi Niks,

Just been thinking of you and your daughter and wanted to see how things were going.  I am hoping that no news is good news and she is finally on the road to recovery.

Hang in there!


----------



## Sascot

Was also thinking about you this weekend. Hope you have some dates set for tests.


----------



## kimmidwife

Also thinking about you and Jaime and wondering how she is doing.


----------



## vtfamily

pops14 said:


> Louis CRP has always been normal but his ESR was raised, drs like to work to facts so the crp being normal has proberly put her in the not IBD bracket, which is silly as our gastro nurse says they have several patients with normal bloods and still active desease.  Katie


Same with Gus' docs...his labs are not useful in evaluating his disease.  They rarely show the true nature/severity of the status of his current condition. By the time the ESR is raised enough, he is already too far gone for a simple/mild remedy.

I hope you can encourage her to stay in long enough for the docs and nurses to see first hand what she is dealing with...vomit, pain, etc...  It might even take a week or two of "on site monitoring," but it will be well worth it.

I can't tell you the number of times I told Gus' GI doc that he was "curled-up in pain."  It wasn't until the doc happened to walk into his hospital room and saw him in that position, that he finally/truly understood what we were dealing with.

Short of her being willing to stay in the hospital, can someone stay with her and video her "day"?  I know she will resist, but at this point...it's going to take something drastic to get some action.

Best wishes for you both!
Cheryl VT


----------



## pops14

hi Niks, how's your girl thinking of you both.

Katie


----------



## Farmwife

Checking in also? Feel loved yet?


----------



## Niks

Aw thank you ladies I am feeling loved!!

She has been feeling better in herself and been keeping some small meals down! Luckily no more of the really bad kidney stone pain. 

She has urology tomorrow, which she only found out about Saturday. Not sure why as her op is 4 th December.  

Her psych appoint was ok. He basically discharged her and wrote report saying there was no psychological reason for her vomiting ! 

Still no news on pillcam!

So mostly much more positive but she is really upset because her work have cut her hours to 16 a week! Really not happy and she's seeking legal advice.  Their reasoning is because of health and for her own good.  The crazy thing is, that even though she's had a rough time she has still managed more hours than everyone else and is rated their top agent! Hopefully she can get this sorted.  

I do understand where they're coming from, last week alone they called an ambulance twice and she was passing out loads. I think Jaime has learned that she needs to know when to call in sick or  just go home before it all gets that bad.


----------



## Clash

I'm glad to hear the kidney pain is settling down.

I know she has to be stressing about the job situation, my Non-IBD daughter freaks out when either of her two jobs cut her on hours for any reason. She still managing about 40 a week but kids and their money.

I'm glad the psych agreed that this wasn't something psychological and wrote something saying so.

I hope you guys hear from the pill cam soon and Jamie can find full relief!


----------



## dannysmom

I am happy she is feeling a bit better and happy you have the psych letter. Thanks for the update.


----------



## Niks

I have news! 
Just had a call from Oxford. Jaime is having pillcam by endoscopy TOMORROW! :eek2:

I actually can't believe it!!! We need to be there at 8.00am.


----------



## upsetmom

That's great news Niks!

Good luck..:ghug:


----------



## Sudsy

Thank goodness!!!!!!  I hope this is the thing that FINALLY gets this whole rotten thing on the path to resolution and good health for your daughter.


----------



## Mylittlesunshine

Aw nik hope the pill cam goes well 
And you get the results you need x x 
Thinking of you always x x


----------



## xmdmom

Hope it goes well and provides useful information.
Did they prescribe a clean out  prior to the pill cam?


----------



## dannysmom

I hope this leads to some answers! Good luck!


----------



## Stephyjane

Fantastic news  I hope you get some answers :hug:


----------



## Devynnsmom

That's AWESOME news!!! Hopefully you will finally get some answers!!


----------



## ChampsMom

Oh my gosh Niks!  That is awesome news!  I pray you all get some solid answers.   ((((Hugs))))


----------



## xX_LittleMissValentine_Xx

Good Luck! Really hope you get some answers!


----------



## Sascot

Wow, good luck for that!  Will check in after we get back from Andrew's operation on Thursday. Glad she is a little better.


----------



## Niks

Thanks everyone!

Good luck too Sascot xxx


----------



## Niks

xmdmom said:


> Hope it goes well and provides useful information.
> Did they prescribe a clean out  prior to the pill cam?


xmdmom - I asked about this when she called me this morning.  She advised against it as she says she doesn't want the camera to whiz through.  I did explain the whole slow transit and constipation issues, she still advised against it!

Jaime has felt sick today but hasn't been sick and has had BM's.  So just hope that it does go through!

Urology appointment was pretty good.  He did a cystoscopy while we were there, only took a few minutes!  I have no idea why the original doctor wanted to do it under GA, was uncomfortable but for a couple of minutes really not worth a GA!  We were not expecting that, but now no need for appointment on 4th!

He said she was clear of stones.  Thank goodness.  He did bloods to see if she was likely to get these again.  He also wanted a 24 hour urine collection.


----------



## kimmidwife

Niks,
So excited to hear about pill cam tomorrow yay!!!!!!! Praying you get answers finally!!!!!!


----------



## vtfamily

Niks said:


> I have news!
> Just had a call from Oxford. Jaime is having pillcam by endoscopy TOMORROW! :eek2:
> 
> I actually can't believe it!!! We need to be there at 8.00am.


A-M-A-Z-I-N-G!

Does that mean that they are going to place it with the scope and then let it "flow" through?

I hope it gives you the answers you need!

Cheryl


----------



## poppets mum

Hoping everything goes smoothly tomorrow with no hiccups and you get some answers.


----------



## Niks

Cheryl they are. Putting camera directly into small bowel.  Just hope it moves!! xx


----------



## Crohn's gal since 1989

:goodluck::goodluck::goodluck::goodluck:

Wishing J a successful outcome and finally some answers!


----------



## Niks

Think everything went okay.  5 attempts to put cannula in for sedation, nearly was going to do it without!  Luckily they got a vein.

We got back from Oxford about an hour ago, and she is experiencing sharp pain, which is not her normal pain :eek2:...  Really really hope this is not going to be a complication!  Urrrggghhhh.  She wants to wait a while to see if it settles down.


----------



## Niks

OH!  AND what is going on with the new look site?  Thought i'd come to the wrong place to start with lol!  xx##


----------



## Jmrogers4

Catching up, Glad pillcam is happening.  Hope her pains have settled and you get solid results.


----------



## Tesscorm

Hope her pain is settling!!  And that you finally get some answers!



(PS what new site look???  Looks the same to me??)


----------



## Niks

Thank you, she's asleep, so much better! Is the same on my phone but looks completely different on laptop!!! X


----------



## Tesscorm

Hmmm, I can't remember where to find it but somewhere on the site, you have the option to change the format that you view.  Perhaps it was somehow changed on your laptop???  If you ask on the Site Suggestions, etc. subforum, I'm sure someone (more techie than me! ) can help you change it back.


----------



## Niks

Ha Tess, thank you!  You were right, I must have changed it by accident.  All back to normal now, really threw me!  lol xx


----------



## kimmidwife

Niks,
Glad all went well. Caitlyn also experienced some very severe pain when the camera was passing and it was very painful until it passed. I am unsure why. Maybe scar tissue? How soon until you get the results?


----------



## CarolinAlaska

Did it make it through?  Did she get the camera out the other end?  It took us a couple weeks to get the results back...  I'm so glad they did the test, but not happy that they didn't prep her first... really?!


----------



## Niks

She had sharp pains on and off, luckily not lasting too long. 

Wonder how long it will take to go through her!!!  Results will be 2-3 weeks.

The lady was adamant she didn't have to prep Carol.


----------



## my little penguin

Ours took a day to get results back
How are they going to see the colon if there is no prep,
It took DS three days to completely pass it.


----------



## DanceMom

Our only prep was no dinner the evening before the test and of course no breakfast the morning of. They were mostly interested in the small bowel and felt a prep wasn't necessary. Of course A tends to pass things super quick anyway. ....


----------



## Niks

She was only allowed a light lunch the day before and then only clear fluids. But that's all!! X


----------



## dannysmom

Prep is typically not required ... but I wish my son had prep'd. The results were ambiguous because they could not be sure they saw a Crohn's lesion or debris   in one area. It sounds like Jaime fasted longer than Danny ... I think he was allowed dinner, but just no breakfast.


----------



## Farmwife

Hope all is going well.


----------



## CarolinAlaska

The little camera is really cool.  Have you gotten it back yet?  Jaedyn still has hers...


----------



## Sudsy

My dd was 9 when she had her pill cam.  She couldn't (still can't!) swallow pills well, so got permission to have it in a spoonful of applesauce.  It was the weirdest thing to see applesauce with a glowing, blinking light in it!

I was in the background singing the "Magic School Bus" theme song and saying, "seat belts everyone" (for those of you who know the show/books) and musing that this was the most expensive mouthful of anything that she would ever swallow!

Niks, hope your dd is making it through okay and you finally get some ANSWERS!!!!!


----------



## DanceMom

It is even more weird to see poo with a blinking light in it! lol


----------



## Farmwife

Sudsy said:


> My dd was 9 when she had her pill cam.  She couldn't (still can't!) swallow pills well, so got permission to have it in a spoonful of applesauce.  It was the weirdest thing to see applesauce with a glowing, blinking light in it!
> 
> *I was in the background singing the "Magic School Bus" theme song and saying, "seat belts everyone" (for those of you who know the show/books) and musing that this was the most expensive mouthful of anything that she would ever swallow!*
> Niks, hope your dd is making it through okay and you finally get some ANSWERS!!!!!


:rof::rof::rof:
I so remember that show!


----------



## Jmrogers4

Mz. Frizzle Rocks!  We have never done the pill cam but now if we ever have to I will be thinking on Magic School Bus.
Hope you get results quickly Niks.  Sitting on pins and needles here waiting.


----------



## Niks

We even had magic school bus here! Lol.

No camera through yet! More sharp pains yesterday but ok today.

Xx


----------



## lsgs

Niks just so you don't panic, I never saw mine pass and it's definitely not in there. So not seeing doesn't always mean it's stuck


----------



## Niks

She has really slow transit, so not worried. I told her she might not see it too xx


----------



## my little penguin

The Gi would know if it was stuck once they review the photos .
The camera stops working after 6-8 hours.
The minute she took off the belt the data was sent to the docs file to review.
They can tell from the photos if it exited the small bowel because after that it is no longer an issue.
Hopefully they will review it soon even if you don't know the results.
DS has slow transit but from the pillcam we found out his small intestine has a normal transit time . His large intestine however is the slow area.
The pill can left DS 's small bowel in about 4-5 hours per the Gi but he didn't pass it for two to three days I think.


----------



## DustyKat

Just catching up Niks. :ghug: 

So hope the pill cam gives you guys some solid answers and direction! Good luck! 

Dusty. xxx


----------



## vtfamily

Hoping all goes well...and normally for Jamie.

A note from one of us for whom it never goes normally...still no worries.  The purpose of the pill cam is to obtain information.  Valuable information can still be obtained if the camera does get stuck.

Gus has had the pill cam twice.  Twice it was stuck...and we didn't know it at the time because it didn't alter his symptoms our cause extra pain.

The first time the doctors thought the 4 hrs of images were the camera making it's way through the small bowel and did not see signs of inflammation.  Meanwhile it was stuck in the beginning of a 35 cm stricture section, and the images were mostly of the same section, over and over and over and over.  Gus started to have pain about a month later and an x-ray revealed the camera was still inside.  Still...VICTORY!  We finally knew that there was a stricture and they removed it.  That episode sent Gus into his first period of peace in five years.

The second time it got stuck in the duodenum.  Again 4 hrs of images of the same section over, and over, and over...  This time the images showed a huge amount of inflammation, so the doc decided to follow-up with a scope.  It knocked the GI docs socks off when he found the camera lodged in the duodenum.  He removed camera right then and there (without surgery this time) and found nasty stricture section in the duodenum.  Result, surgeons created a bypass where the food could go directly from the stomach into the small bowel.

All of this to say that even in a worst case scenario, where the camera does get stuck, you will still get answers! :hug:
Cheryl


----------



## CarolinAlaska

Jaedyn poo-ed into a hat until she found her camera, but it didn't take long.  No slow transit here.  She still poos 2-3 times a day...


----------



## Crohn's gal since 1989

CarolinAlaska said:


> Jaedyn poo-ed into a hat until she found her camera, but it didn't take long.  No slow transit here.  She still poos 2-3 times a day...


Maybe we should clear up for those that don't know, that a "hat" is a type of bowl that sits inside the toilet so the nurses can measure your output.  Had I not had my surgery in September I would have been really alarmed by your statement!:rof::rof::rof:


----------



## QueenGothel

Thinking about you guys and wanted to let you know I am supporting while lurking. :eek2:


----------



## Niks

Thanks everyone. 

TBH Carol - I did wonder!!!  lol.  Made me chuckle.

She has no results, but wasn't expecting anything just yet.  She hasn't seen camera, but maybe has passed it - who knows!

She does have a few new things.  She has been complaining of a horrible taste in her mouth - she says it 'tastes like copper'.

Also her knees and wrists are really achey :eek2:

Hmm.  Just hoping for something to come up so that we get to the bottom of all this!


----------



## vtfamily

Just to be safe...If she doesn't know for sure the camera has passed within a week, have an x-ray done to be sure.  Quick.  Simple.  Efficient.  It will either show-up on the x-ray or it won't.  When Gus' camera was stuck, it looked like he swallowed a flash drive!

Actually, that is how we found out about the Kondremul oil.  The docs thought it was in the colon and that the oil would "lube" everything and it would move.  It didn't.  The camera was actually stuck in a corner of the small bowel that butts up to the corner where the transverse and descending colon meet.  Ah...memories!  LOL

Take care.
Cheryl


----------



## Kimberly27

Niks,
My computer has been messed up for two months.  I've been following you from afar, but have been holding both of you in my heart.  

Fingers crossed for news!

Kimberly


----------



## CarolinAlaska

:rof:LOL, Jaedyn loves hats too much to poo in them!  This hat was a special pan that fits under the toilet seat to catch poo and pee samples for the lab!  LOL!oo:


----------



## QueenGothel

Omg... this is the longest post ever in this a forum.  FYI I only know bits an pieces to date because I can by no means backtrack anymore.  It is too hard to read through all of it.  Niks do you think you can give me a refresher, I lurk and I do think I know where you guy are but I am not sure what they have ruled out verse what they think is going on exactly now.  Verses what you think is going on.


----------



## Niks

Ok Mary.  Lol, it is a mammoth thread!

Colonoscopy and Endoscopy clear.  MRE clear (after 6 months of steroids).  Endoscopy biopsies in Swindon showed characteristics of Coeliac Disease, but Oxford have never seen any of this.  Completely gluten free, no difference in symptoms.

Vomiting lots.  Abdo pain still bad.  Constipation.  Often vomits blood, pees blood and poos blood!  Has recently had kidney stones.  Weight has dropped 57kg to 47kg

GI's diagnosis IBS with Visceral Hypersensitivity.

Bone Density scan spine score -2.9 Osteopenia, diagnosed earlier this month, but this is actually Osteoporosis score.

So now after such a long time she now has had pillcam.  Her GI is 'convinced' it will be normal.

Today her temperature is 39 degrees.  Grrrr.  She is feeling really rough.  Probably a virus, but for goodness sake!!!!  Just wish she could have a few days of feeling better!


----------



## DanceMom

Niks- Have you seen a Rheumatologist yet to rule out some sort of autoimmune condition?  I know that many of them affect the kidneys.  We are just beginning to look into this for A but it seems like your daughter may benefit from someone other than a GI's perspective.  I think GI's tend to like it in the box and Rheumatologists/Immunologists think outside the box a little more.  Our girls definitely don't fit in any box!!


----------



## Niks

DanceMom - she doesn't have a Rheumatologist, but she has started to complain about her wrists and knees aching.  I do think this may be the way to go, especially if her pillcam does come back clear.   xx


----------



## fosterschick

Any news yet niks ? Has she got an appointment for t results of t pillcam ? X


----------



## Niks

Hi there.  No!  Nothing, not at all surprised!  Am a little concerned though, she has started peeing blood again and Urologist is adamant that she has no more stones!  Hmmmm.  What else could cause this?

:eek2:


----------



## CarolinAlaska

So, what does the urologist say is the cause of the hematuria - that is his territory...  How about a bleeding disorder?


----------



## pops14

Hi Niks 
How's your girl ??


----------



## Niks

Nothing from Urology or Gastro. She's called GI secretary today. She's feeling dreadful, lots of pain, vomiting and feels drained, but has been losing mucous and blood without BM.

Secretary said pillcam pictures not been reviewed yet but would talk to GI and call back. She didn't :ymad:

We are both running out of steam. It's her birthday on 21st. Wanted to take her to Winterwonderland in London, but she's too worried about booking anything in case she's not well enough.


----------



## littlemissh

Its my daughters birthday on the 21st as well, though she is a wee bit smaller!
I always tell her the most special people are born near christmas.

I hope you hear something soon.


----------



## pops14

oh niks I feel so ashamed of the NHS over this sad episode unbelivable you are still waiting for answers love to you both 
Katie


----------



## Sascot

It is truly shocking how they have treated her. Hope she phones tomorrow! Did you ever hear back about seeing a specialist in London?


----------



## vtfamily

If she didn't see the pill cam come through, it's time for an x-ray to rule that out as a possibility.


----------



## pops14

niks I think pill cam stuck passing blood and mucus says to me empty gut from obstruction down, if her abdomen starts swelling get her to hospital and don't leave till they xray, she needs to ring again tomorrow.


----------



## kimmidwife

Niks,
I have to agree with the above. Sounds like could be an obstruction. She needs to be seen!


----------



## Niks

Ok. Thanks everyone. She doesn't want to 'bother them'! But I sure as hell will if things aren't better tomorrow!!! Xx


----------



## vtfamily

I know it seems like, "ugh! another problem," but if the camera did get stuck, then that means she has a stricture (or something like it) that the doctors have missed all along...and finding it (even this way) is a GOOD thing.


----------



## Niks

GI finally called Jaime back today.  Still no pillcam results but he thinks she is really backed up and the bloody mucous is overflow.  

He has told her to do a citramag, which she has just done.  Hopefully will get things moving, we were thinking it might be a plan!

I think her B12 levels may be getting low again as her fingers are going numb a lot.  This is how it started last time.   Her weight is dropping too, so she is going to start taking fortisip again.


----------



## Niks

Oh and she finally got an appointment at the pain management clinic on 25 February 2014!!!  Great


----------



## pops14

:ybatty oh Niks  thats appaling


----------



## pops14

oh Niks  thats appaling


----------



## vtfamily

Interesting..no x-ray, but treating for being backed-up, without really having any idea as to why she is backed-up.  Hmmmm.


----------



## Mehita

I agree with vtfamily... at least get an x-ray before pumping the poor girl with more meds that may or may not be helping her.

And still no sign of the pill cam coming out?


----------



## Trysha

Have you thought of compiling all the history---lack of progress  etc---and send it to the Minister of Health with a copy to Mr Cameron.


----------



## vtfamily

Trysha said:


> Have you thought of compiling all the history---lack of progress  etc---and send it to the Minister of Health with a copy to Mr Cameron.


oooooohhhh!   aaaaaahhhhh!  Can you do that??


----------



## fosterschick

Oh niks bless ur girl , this is typical NHS treatment now isn't it no good when ur girl is suffering , I can't believe they haven't even read t pill cam yet x


----------



## littlemissh

I don't think Mr Cameron or the health secretary Mr Hunt give a monkeys. They are wealthy men who would use private health care if there was a moments delay in their care.
Their main aim it seems, is to destroy the NHS and let their cronies who own massive private health companies take over the easy bits, leaving the more complex work to the NHS (with no money to do it with).


----------



## CarolinAlaska

Is the citramag helping?


----------



## Niks

It did work thanks Carol.  It certainly helped with moving everything, no camera seen, but she may have passed it already?  But as Dr told her there was a fair amount of blood.  She is still losing mucussy blood too :eek2:  I really don't know!  But at least if she was really backed up, things have now moved!

Writing to Mr Cameron!  You guys are amazing!  I do agree with Littlemissh that he wouldn't give a monkeys!  Hopefully instead something will come from pillcam results (eventually)!  The Dr who called Jaime back is just lovely and said that the results are still being read as they are not on the system.  He will keep an eye on this for her.  Her actual GI doesn't think that there will be anything to see!  So we will truly be back at square one if there isn't.  That is when we will get him to refer to London.

She was getting really bad back and abdo pain before the citramag.  The back pain has now eased right off.  The back pain is worrying me with her recent bone density results!  

Some good things too.  Her vomiting has eased right off!  A couple of days with no vomiting!  This is strange to me if she was really backed up?  On the flip side of this her appetite (when vomiting she is normally really hungry) has almost disappeared!  She just doesn't fancy anything much.


----------



## xmdmom

So, I haven't read every post,  but I did have a thought and some questions. Did J have an upper endoscopy and if so, what did it show? Has she been on acid blockers prior to endoscopy or at other times?  

Has anyone ever suspected Z-E? Zollinger -Ellison syndrome, it's very rare, but causes similar symptoms to what she's experienced.

Signs and symptoms of Zollinger-Ellison syndrome may include:

Abdominal pain
Diarrhea
Burning, aching, gnawing or discomfort in your upper abdomen
Acid reflux and heartburn
Nausea and vomiting
Weakness
Bleeding in your digestive tract
melena-tarry stools at times
Unintended weight loss
Decreased appetite
Anemia

It's also associated with B12 malabsorption

It can also be associated with other endocrine abnormalities that cause kidney stones.  It usually occurs at an older age than J and  ulcers are often seen in the stomach or duodenum but can be limited to the jejunum where scope can't see them.

A fasting gastrin (blood test) is a noninvasive test to begin to look for this.

Also-- is there any family history of any unusual medical conditions?

It is extremely rare but I thought given all that J's been through, worth considering.


----------



## Niks

Thank you xmdmom.

It is worth looking into!  I will have a look xxx


----------



## pops14

how's your girl


----------



## Niks

Thanks for checkig in Pops, she's pretty fed up.  Still suffering from back and abdo pain.  Her vomiting is not too bad, which is good, but her appetite is poor.  

Rectal bleeding has settled but she has been peeing pink on and off.  Urrgghh, she is just fed up with Doctors and Hospitals so at the moment just trying to muddle through.


----------



## pops14

Oh poor lass,   get back on to GI for results of pill cam, she must be getting so run down and as she is still getting blood in urine contact uro again don't let it rest. Is she having bowel movements now did laxative work, I think its time you got her to go to GP and get him to refer her to London, Prof Forbes at UCL sees my sister he I think was at St Marks he really is top Dog in UK gastro lovely man and has very good team.


----------



## Niks

Have called Urology, The Secretary has e-mailed the Doctor, who is surgery all today, but she said they will get back to Jaime as soon as possible.

Last week when Jaime called Oxford she was told they would contact her as soon as any results were through!  Hmmm, how long does that take?

I agree though, if nothing shows on this she needs referring to London.

On a completely non medical note, Jaime has noticed the same car following her several times over the last few weeks, yesterday he followed her from work to home.  She is so scared.  She called the Police, who have given her a crime number and are going to come and see her today.  This morning she had a note on her car saying 'Don't be scared, I'm friendly'.

Poor girl, she really doesn't need this.  :yfrown:


----------



## Farmwife

*Spelling.....I can't do it.   *

Ummmmmmm......................................................
Do stalkers ever think their unfriendly?

Can someone follow Jamie (other than the bad guy) and hopefully get the license plate number?


----------



## Niks

She has half the plate, so hopefully he can be found!  She knows the make of the car too.  I think this will be enough for the police to work it out, but scary huh!


----------



## dannysmom

Sorry about the stalker ... that is scarey. Is there a police station nearby that she could drive to if followed again?  I wish he did not follow her home.


----------



## Niks

The nearest Police Station is a 20 min drive away.  The Police have advised her to drive somewhere close, where she knows people are home.  Also not to drive anywhere remote. If I'm at work she is going to go to her friends or Dad's house.  

I am going to talk to my neighbours too, they are pretty nice, I am sure if she was scared, she could go into one of their houses until someone could pick her up.


----------



## Farmwife

Is it at certain times of the day? I mean if he lived in the area the note should have read, I'm not following you I live in the area.
Yes, the fact that he knows where she lives is scary.

HUGS


----------



## Niks

Last night it was around 8pm.  He doesn't live around here, but Jaime has noticed his car before following her, but she just thought it was coincidence.  Hopefully once the Police get to talk to him he will leave her alone!  

It really isn't good that he knows where she lives


----------



## poppets mum

Just what she doesn't need, poor love, to make symptoms worse with extra worries.


----------



## kimmidwife

Niks that is scarey! I hope the police are able to do something. Really not what she needs right now!


----------



## Niks

She has to go to the Police Station this afternoon at 4, we will see what they say!

She woke up this morning with much worse abdo pain.  She told me she hasn't had a BM since she did Citramag last week!!  Urghhh.  She will have to do another one tonight, but have told her to call Oxford.  

She doesn't think the camera could still be there as the citramag did work last week, however I think watering everything down could just get it passed the camera if it is lodged?  What do you think?  I really think she needs xraying to at the very least eliminate that possibility.


----------



## pops14

definitely x-ray its called overflow and you are right citramag will have softened it so it might pass by it, just had coffee with my sister who has adhesions causing stricture when she obstructs she feels as if the meal is still in stomach like she has eaten a brick at worse she vomits back meal like Jamie and has bad abdo pain. get her to call Oxford and have x-ray.


----------



## kimmidwife

I second pops. Call and get her an X ray. she could be obstructed and overflow just passing around it. Good luck at the police station. Hope everything gets resolved quickly with that.


----------



## DustyKat

Good grief Niks! Just what Jaime doesn’t need on top of everything else!  I hope the police can get it sorted. 

I agree wholeheartedly, get an X-Ray done, you need to be sure that the camera is out. 

Good luck! 

Dusty. xxx


----------



## CarolinAlaska

You'd be rich now if someone started with Jaime's story when it all started and followed her with a reality program.  She'd probably have a lot better care too since the hospitals wouldn't want the world to know how much they put her off!  Now with the stalker... sheesh - it's a soap opera!


----------



## pops14

Any progress with your girl, results ?? police helpful ?


----------



## Niks

Police have been great, as have neighbours. If she sees him she calls 999 and they have her on high alert so she only has to give her name, all details come straight up.

The police showed her a picture of him! So he must have form and they said they would pick him up. Not sure if they have or if she'll be told if they have.

Otherwise nothing! She has a new gastro appoint for MARCH! Really! Surely they can't leave her that long for results. She did have 1st BM without citramag today, so I guess that's good.

Just so frustrated with it all. God knows how she feels


----------



## pops14

Just keep ringing gastro secretary for results be a pain think NHS motto must be " He who shouts loud enough get the attention" 
so pleased the police are being good must have form if they have his mug shot creepy.


----------



## dannysmom

I understand that it does take several hours to review all of the images from a pillcam. We got our results the very next day. This seems way too long.


----------



## DanceMom

Two weeks is plenty of time to review the images from the pill cam.  I'd call every day until I got answers.  That's ridiculous.


----------



## kimmidwife

Niks,
I second the gang. They are taking way to long with those results. Please keep calling and bugging until they get them to you.


----------



## Jmrogers4

Just adding my 2 cents - call and bug them!  Hope you get them soon


----------



## Niks

Will call tomorrow, and keep trying, but my guess is that they are clear, or they would have let us know!?


----------



## Kimberly27

This just doesn't make sense!  March!  I thought you wouldn't get an apt. right away (because they've screwed you over so many times), but March?  My mouth literally dropped open when I read that.

What about a sit-in at their office?  Can you start paperwork for malpractice?


Kimberly


----------



## Sudsy

Any word when you called today?  I hope you got some answers.  This is so ridiculous....


----------



## Niks

No!  Left a voicemail and also sent an e-mail, no reply!!!!!!  GRRRRR


----------



## CarolinAlaska

It's time to consider a move out of that blasted country to a place where your daughter won't be ignored.  Do you have any relatives that live elsewhere who might help?


----------



## Farmwife

Hugs my forum friend. Will be thinking of you both.


----------



## pops14

Hi niks,
What sort of Christmas did Jamie have did she keep anything down? last xmas Louis was on NG feeds so rough for him now eating for England as on infliximab . x


----------



## Niks

Hey there.  Hope you all had a great Christmas!

Jaime wasn't so bad on Christmas Day.  She only vomited once, after dinner, but wasn't too bad.

Boxing Day, lots of pain.   Yesterday lots of pain and bloody diarrhea.  She called Oxford and was promised a call back, but nothing!  GRRRRR.  This is not normal for her, she thinks it may be overflow but not sure.

She does feel better today though.

One new thing she's been getting since Christmas Eve is a very red and sore tongue, which bleeds sometimes.


----------



## lsgs

Red and sore tongue... I'd be checking for deficiencies. 

It's a horrible situation when you think, she only vomited once is a good day


----------



## Catherine

Niks, has she had her b12 checked lately?


----------



## Niks

Catherine - no, but she has been getting some pins and needles as well.  That was one of the symptoms last time.

I might ask GP if he can do bloods for her, considering her appointment with Oxford is March!!!  :ybatty::ybatty::ybatty:


----------



## Niks

Okay.  No call back from Oxford, but no more D over the weekend.  No more BMs at all.  Tonight however just dark red blood with no stool at all.  So people what to do now?

She will call again in the morning, but what the hell is going on with her!  She feels that she is being a pain by keep calling but this just isn't right or good!  GRRRR  :ybatty::ybatty::ybatty:


----------



## kimmidwife

Niks,
I don't like that just blood comiming out is not normal. May be time for another trip to the ER. Please push them for a referral to that big specialist. I think it was at St. marks?


----------



## pops14

oh Niks,
 that's not good, how much blood is she passing? its  important how much, if it was just small amounts she still needs to be seen but larger amounts can be more worrying.
 The colour gives you clues as to where in bowel it comes from, darker generally means it is from higher up, if its fresh bright red it can be caused by piles but as you say its dark it sounds higher, this is not good.  l would ring again today if you don't get through to gastro DR go through hospital switchboard, main hospital number and ask for his registrar or senior reg to be bleeped  this will come up on his bleep as an outside call he will have to answer it, so you will get straight through to his team then you must insist she is seen. 
Best of luck
x


----------



## Niks

Pops she had a call today finally!   I am now at my wits end.  No one seems to be taking this seriously.  She told him what was going on.  He said that the pillcam showed her bowel looked normal, however it isn't contracting properly.

He suggested that if she doesn't have a BM for 3 days she needs to take citramag with senna.

WHAT??!!!  Also her next appointment has been changed to the 25th March!  

I have emailed Oxford.  About her bone density, B12, possible pillcam retention, IBS diagnosis?!  Bleeding.  I have asked for an urgent referral to London.

They hate it when I e-mail, but what on earth is she supposed to do!  Does this change diagnosis?  Does this mean that camera even left her small bowel?  Does it mean that if it didn't get far through her bowel that there could be more problems later in her bowel?  

How can they just call and say that her bowel isn't contracting and take citramag, yep, we'll see ya at the end of March!!!  LIVID!


----------



## pops14

how much did she bleed?, I am always amazed about how laid back my sisters team are about her bleeds they are at best debilitating and can be very dangerous if big. if she bleeds again either bleep team or take her to John Radcliffe A & E and get her admitted under her consultant. she needs Xray to check for pill cam.your gp can request xray get appointment Thursday for that.


----------



## Niks

pops14 said:


> how much did she bleed?, I am always amazed about how laid back my sisters team are about her bleeds they are at best debilitating and can be very dangerous if big. if she bleeds again either bleep team or take her to John Radcliffe A & E and get her admitted under her consultant. she needs Xray to check for pill cam.your gp can request xray get appointment Thursday for that.


Thanks Pops.  She  leaked a little onto underwear and a fair amount on toilet paper.  She said just a little today.

I think getting GP to book xray might be a good idea.  She really doesn't feel great so if there's any more bleeding will take her to A&E .


----------



## Sudsy

I truly cannot believe the nightmare you are going through.....May 2014 (finally) bring her good health.
(p.s. bring the underwear with you to Emergency)


----------



## fosterschick

Could u consider the posibilty of going private and asking to trial an IBD drug ? ( Consultation is around 150 pound and meds range from 12 to 50 per month ) 
 Given jamies symptoms and response to pred I can't see any reason why they wouldn't give her medication ( u are paying after all ) 
 An expensive start I know but provides some proof and hopefully some relief for jamie ?
 The only reason I am suggesting this is I am in similar ( no way as bad as jamie ) situation, same markers,symptoms, ect but my NHS consultant has basically I won't get medication until crohns is undoubtably evident( eg operation time ) rather than a posibility !! So I'm still under ibs even tho I don't fit the ibs symptoms !
 I asked if I went private if I would get to trial a drug she said they could give me something but she wouldn't recomend it ( her words to avoid law suits I guess ) !
Awful as this is this is t start of privatisation and we don't fit t tick box for further care on t NHS . God bless u and your daughter this situation is awful x


----------



## Mehita

What would happen if you just showed up in London? Would they turn you away w/o a referral?


----------



## Kimberly27

> What would happen if you just showed up in London? Would they turn you away w/o a referral?


Niks,

That's what I did with my son Reed. I couldn't get a referral to our region's experts, so his pediatrician suggested a plan.   I put Reed in my car and drove 2+ hours to San Francisco and became a patient of UCSF through the ER room.  They did discharge my son because Reed wasn't claiming his true pain at the time; fortunately for us, we got a call back and immediate admittance to the hospital because of an abnormality on his CT scan.  EVERYONE told me the initial mistake I made was not insisting upon a GI consult in the ER room (4 am- wasn't thinking straight).  Had I done that, we would have been automatic clients of the GI department.

Are you allowed to insist on consults?  Could you just stay put until you got one?  

Good luck.  This nightmare continues, and my heart goes out to you and Jaime, and to all your friends and family who are supporting you.  I hope this year brings your family good health.

Kimberly


----------



## pops14

Does sound like the bleeding is not to great which is good, hope the laxative helps try regular laxatives for a few days and see if that helps her symptoms get her xrayed as priority. keep hassling them for earlier apt  and straight back if she bleeds again. You poor things such a rough time.


----------



## Niks

She has agreed if she has any more bleeding that she will go straight to A&E.

I don't know if the Hospital in London has an A&E Department but will look into it!  That is how she became a patient in Oxford, I just took her there!

Her actual GI has been away the whole of December, I am really hoping that when he gets back things will start moving.

Going private maybe a plan.  I just need to work out where to take her, as the Doctor she is under right now also does private patients, I am guessing it is a good idea to start with a fresh set of eyes!


----------



## lsgs

Personally, I don't find going private gets you any further. Same doctors, same brains. Just a higher price tag and a comfier waiting room. 

Although I do find they will pay you more attention, do more tests, and keep you under review because it benefits them financially. It won't get you IBD meds, they still have to justify their decision whether private or not. Having said that, I get LDN privately, although that is not generally given on the NHS for anything other than addiction anyway. And it most certainly was not a GI who prescribed it for me!


----------



## Niks

I have found a company where I can get LDN.  It doesn't seem to expensive.  Jaime is really wary about taking something that her GI hasn't prescribed, but I think it might be worth a go!


----------



## pops14

If you take her any where take her to UCL. have you googled slow gut mobility it could be that she does have some of symptoms especially as GI said cam showed reduced peristalsis but she NEEDS to be seen earlier and start to get fit again, poor love.


----------



## CarolinAlaska

I don't understand how the "yes, it was abnormal movement" and "we'll see you in March" fit together?  The first says she has a problem.  The second says she doesn't...  Ugh!  Why not offer some help for the dysmotility?  I think an xray (your GP can order) to make sure she's passed the pillcam is a definite necessity...


----------



## xmdmom

Reduced peristalsis can be a secondary symptom.  That's what an ileus is...


----------



## Niks

URRRRGGGHHHHH. Just trying to find some information on using regular Citramag.  This so far is the only advice she has been given, to take Citramag and Senna if she hasn't had a BM for 3 days. There really is no information but just found some of the DO NOT USE categories! 
Not to be used in
*People who are very dehydrated*.
People with a blockage in the stomach or intestines.
People with an abnormal hole in the stomach or intestines (gastrointestinal perforation).
*People with reduced muscle activity in the intestines (ileus)*.
People with retention of food in the stomach (gastric retention).

Jaime is often dehydrated and clearly has reduced muscle activity, just for starters! So now what?


----------



## pops14

niks get her an xray and ask GP for advice she should be able to get emergency apt today with GP.


----------



## Niks

She used citramag yesterday morning with senna.  It finally came through this morning!  She's gone to work.  She thinks that Oxford get fed up with her or my calling/e-mailing and wants to wait to see if her GI comes up with a better plan, once he's back to work properly, without badgering him.

She has promised if she has anymore really horrible pain or bleeding she will go to A&E.  I just think it is horrible waiting for that to happen


----------



## pops14

Good at last but am l right is that six weeks for the pill cam to pass, that's madness her gastro needs to know this and only passed with "nitro" behind it. I know where she is coming from but this is so not good that she is not going to be seen till march, if you don't tell them she has finally passed it six weeks after scope, they will assume that she passed it ages ago and did not notice. just ring sec and let them know she WILL start to back up again if nothing is done. sorry this sounds like a nag but so frustrated for you both canot belive they have let this situation continue. x


----------



## Niks

Sorry!  I meant that citramag worked, but it took 24 hours to work through her.  She hasn't seen the camera.  It could have come out, but I think you're right that she needs an xray to check this.  

Apart from one episode of bloody diarrhea, and bloody mucus, Jaime has not opened her bowels since her pillcam without citramag.  This even for her is not good!

Just convincing Jaime to go back to the GP is not easy.  I just hope that her GI gets back to her sooner rather than later.   If I haven't heard by next week I will write to the Director or PALS.


----------



## Niks

Ok so back to stalker!

He was banging on door early hours of Saturday morning (I was sleeping in at work)  J terrified, called her brother, then me, who told her to call 999.  They had police, dogs and helicopters out, but didn't get him.

Tonight she ran through the door hysterical.  He was crouched in bushes watching her.  She immediately called 999, within 2 mins we had a police officer in the house.  11 police units around the area, police dogs and helicopter again!

They have a man in custody and are very positive that they have the right person, J has to go and identify him tomorrow!!  Really hope it is him.

They are giving her a tracking device, so they know where she is and an alarm, which when she pushes button goes straight through to them and they send help!  Also putting cameras up outside our house.

I am so impressed with the Police!!!  I seriously wish our NHS was the same.

She has been in a lot of pain.  I have had no reply from e-mail.  J really doesn't want me to write a complaint.  I have told her that if we haven't heard anything by the end of the week I am going to.  

GRRRRRRRRRR  :ymad::ymad::ymad::ymad:


----------



## Farmwife

Wow, that's crazy. Did she find out if she knows this guy?
I'm so happy to hear she wasn't hurt. 

HUGS


----------



## Niks

No FW she doesn't know him. She can describe him and would recognise him, but is very scared!


----------



## pops14

Oh my goodness that is so scary, also that the police are reacting so quickly they must suspect this chap is bad news, lets really hope they have got him. has she had xray yet to check for pill cam it will also show up if she is bunged up behind it, you could just get her to call her GP, telephone consult and he could put form out, our local hosp has drop in xray service if you have GP form.


----------



## xX_LittleMissValentine_Xx

That is so scary. I really hope they have got him! Poor girl, as if she doesn't have enough going on!


----------



## DustyKat

Bloody hell Niks! :eek2::eek2::eek2: 

Poor Jaime. Little wonder she is scared witless, bless her. :heart: You must be overwhelmed by it all too. :ghug: 

I hope you start to get some responses and answers soon! 

Dusty. xxx


----------



## Niks

I know, they are reacting quickly, I think he has previous!  They won't tell her what it is, which is probably not a bad thing!

She hasn't had an xray!  She is trying to just 'get on with it'  I don't know how long that will last.  I really want to write to PALS or the Director, but she really doesn't want a fuss.  She has agreed that if she has anymore bleeding, or pain gets any worse she will go to A&E, but not convinced she will tell me!


----------



## dannysmom

I sure hope it is the right guy ... and he goes away for a VERY long time!


----------



## Sascot

How awful, poor girl.  Glad the police seem to be doing everything they can! Hope it is him they have caught.


----------



## Niks

They have bailed him!  I guess that means he has been charged, but we have no idea what his bail conditions are as yet.  Someone is coming to see her tomorrow!  She is really scared.


----------



## DustyKat

Oh no Niks! You must both be at your wits end. :ghug: 

Thinking of you both. :heart:

Dusty. xxx


----------



## dannysmom

Was Jaime able to identify him?


----------



## kimmidwife

Niks,
Thinking of you and praying! I hope he is the right guy and they send him away for a long time when he goes to court!!!


----------



## Niks

Thanks guys. 

No Jaime hasn't identified him yet. They may be doing that this week.  (why it takes so long is beside me!) She has seen him on our street again!  Police putting cameras in vases in my bedroom as it overlooks the street, and in the porch and kitchen on Monday.

Healthwise his week, she has managed to have a 2 BM's without using citramag!  Her vomiting much better.  Her pain still there but bearable.  So what to do?  Do I kick up a fuss?  Or wait to see if things get worse?  

Maybe she will continue to improve.  I just hope so!


----------



## Farmwife

What does her dad say about this guy. Do all her friends and co-workers know?
Is she good about not going out by herself?

As far as getting better, that's great but.......................
Will it last,I hope so.

Hugs


----------



## pops14

If she is feeling slightly better wait and see but as soon as she has any signs of deterioration start ringing again, how worrying for you all with this nutter about hope he keeps away or gets caught on camera.


----------



## Niks

FW - her Dad is here as soon as she calls!  He has been doing his own surveylance!  He won't let her be on her own.  

Jaime thinks the same regards the hospital.  If she starts to get any worse then she will can and write!  Fingers crossed she stays better though


----------



## Tesscorm

Oh my Niks!!!  Just catching up!   Poor Jamie, as if she doesn't have enough to deal with!  I'm glad she's not going out on her own but, terrible for her to have to live with this fear! 

Thinking of you both!! :ghug:


----------



## DustyKat

Thinking of you Niks and wishing with all my heart that Jaime will be safe and she will soon have solid answers to end the suffering, bless her. :heart: 

Dusty. xxx


----------



## Niks

Quick update.

Police have installed cameras.  Jaime hasn't seen him this week thank goodness.

Healthwise, since last Sunday she has had a horrible stomach bug!  Vomiting and diahrrea!  Makes a change from constipation.  She found it really hard to shake it off so had to go into local hospital yesterday for fluids.  

She seems much better today and had a NORMAL BM!!!!  

Oh and on Tuesday I broke my finger at work dealing with an incident with one of our very upset Young Adults!  Great, now off with a splint on my finger.  Been signed off for 2 weeks, the Doctor at fracture clinic wanted to sign me off for FIVE weeks!!!  :ybatty::ybatty::ybatty:   Nightmare.


----------



## pops14

Well at least you know pill cam must have passed! suppose cameras must make her feel more secure at home. hope she feel stronger soon.


----------



## kimmidwife

Glad to hear about the cameras. Also glad she is feeling better!. Sorry to hear about your finger hope you heal up quick!


----------



## vtfamily

Niks,

Looks like I've missed quite a bit over the past few weeks.  Not sure why I'm not getting email updates any more, but WOW...it's never dull for Jamie.

I hope she can find some peace soon...medically and with the stalker!

Cheryl


----------



## Niks

Since J's stomach bug she has been opening her bowels daily!  In fact yesterday she was getting diahrrea.  (6 times) So really not sure what is going on. 

She looks washed out and aches from head to toe.  Her back really hurts.  Abdo pain always there but manageable.  Just really really painful if someone pushes there, like Doctors like to!!  

Vomiting only once or twice daily, so that has improved.  

Finally after re-sending e-mail, got a reply saying 'It is not appropriate to e-mail!'.  Jaime needs to call (she often doesn't get a call back)!!  Grrr.  Anyway, appointment has been changed to 11 February.  Still a long time since her pillcam was put in at the end of November!!


----------



## pops14

If I was you I would send an stool sample off for culture in case the D & V bug was more than virus, campylobacter of other gut bug, L had episode of that so ill in fact Dr,s thought it triggered his Crohns. it could be that bug has stirred up her poor inflamed gut  and that's why she is having such a rough time, glad apt speeded up but stll ages, if she gets worse take her to John Radcliffe A and E. has nutter stayed away.


----------



## DustyKat

Thinking of you and your girl Niks and wishing this nightmare would end for you both. :ghug: 

Dusty. xxx


----------



## Niks

Thank you!

She didn't see him last week as off work sick, so not really going out of the house.  He was around on Sunday night.  The Police came to take the video footage from the cameras, but one not working, so they have just been round to fix it.   

I really hope they get him soon!

I think she should do a stool sample too Pops.  To be honest though it is so much better than chronic constipation!


----------



## Niks

I really get fed up of only posting bad things, really hope soon this will change!

She hasn't seen stalker for a while, I guess that's good, she has changed her car too.

She has been getting really bad abdo pain.  Diahrrea, really horrible sweats.  Today vomiting lots.  (This has been on and off over last few weeks), but also lots of blood in vomit again.

She called GI Secretary.  Her response was 'Call your GP or go to A&E'  ARRRGGGHH.  I really do need to get her a new GI!  She has an appointment with GP this afternoon, however they really don't know what to do.  

Her GI appointment has been brought forward to 11 February, however I actually don't even want to take her as I know that nothing will change and he will not be at all helpful.    feeling pretty helpless right now.


----------



## kimmidwife

Niks,
It is time to get out of that GI and go to the big guns! I Think you were going to check into St. Marks? I was reading up and them and they sound good. Speak with the GP and see if you can get a referral. They need to do something they can't leave your poor girl like this any longer!


----------



## DustyKat

How did the GP appointment go Niks? 

How is Jaime? Have things settled down again? 

Always in my thoughts and prayers. :heart:

Dusty. xxx


----------



## Niks

Hi Dusty, thank you

Yes things have settled down.   Just really bad indigestion and burning.

She thought that it was probably another tear because of vomiting, advised if anything got worse to go to A&E.  Luckily she didn't get worse!

xx


----------



## DustyKat

Oh Niks. :ghug: When does it all end for you both.  

In my thoughts, always. :heart:

Dusty. xxx


----------



## pops14

poor old lass so very tough, prof forbes UCL 
xx


----------



## Niks

Thanks Pops,  I have looked at him too.  I am hoping that Oxford have referred her!  We will find out on 11th xx


----------



## CarolinAlaska

I hope you get a referral and some answers soon.


----------



## pops14

Hi niks, Do hope you get some help and answers tomorrow, how is you poor lass insist on referral to London, if he says pill cam normal check he had images of all through her gut and ask what is causing all these symptoms if l was you just keep asking for diagnosis. kx


----------



## Niks

Thank you x


----------



## Niks

Ok, we met with Jaime's favourite GI.

Basically there was nothing seen on Pillcam.  He dodged the question several times about how far it had got!  

He has prescribed Calcium Tablets and Vitamin D for bones.

He does not feel that she is Coeliac, so has told her to eat what she wants.  To be fair she has been since Christmas!  Gluten free did not help her at all!

He feels she is 'doing well' and carry on. He feels she will have some very hard times and she will have to battle through these, but nothing is showing as serious, so basically it's just what she has to live with!!

He did book full bloods, but she has to go and get them done locally tomorrow, because it was too late when we left.

Jaime is exhausted with everything and wants to leave London Referral.   She feels that we will just keep going round in circles.  She thinks she needs to live with this, and just hopes things ease off.  

I just don't know.  :confused2:


----------



## dannysmom

hmmm ... maybe nothing on images is appearing serious, but the blackouts/falling and severity of GI symptoms which cause her electrolytes to be way off sure seems serious to me. I do hope things improve for Jaime!


----------



## Sascot

Sorry to hear that. Wish it had gone better!


----------



## pops14

Oh my goodness b***** doctors just because they don't know what is wrong with her they say there is nothing wrong unbelievable, the symptoms have not come from nowhere apart from anything else the damage the malnutrition is doing to her body needs to be addressed calcium tablets ahhhh that poor girl and you. Give her a few days niks then broach the subject of second opinion with prof Forbes at UCL l don't now if you could manage an private appointment most consultants know if you don't have heath ins they will let you revert back to NHS if you need tests/treatment its so hard you cannot let them give up on her.
Heart goes out to you all
x


----------



## lsgs

Niks said:


> Ok, we met with Jaime's favourite GI.
> 
> Basically there was nothing seen on Pillcam.  He dodged the question several times about how far it had got!
> 
> He has prescribed Calcium Tablets and Vitamin D for bones.
> 
> He does not feel that she is Coeliac, so has told her to eat what she wants.  To be fair she has been since Christmas!  Gluten free did not help her at all!
> 
> He feels she is 'doing well' and carry on. He feels she will have some very hard times and she will have to battle through these, but nothing is showing as serious, so basically it's just what she has to live with!!
> 
> He did book full bloods, but she has to go and get them done locally tomorrow, because it was too late when we left.
> 
> Jaime is exhausted with everything and wants to leave London Referral.   She feels that we will just keep going round in circles.  She thinks she needs to live with this, and just hopes things ease off.
> 
> I just don't know.  :confused2:


How sad. I just don't even know where to start with that. Just live with it? TBF I got told the same thing years ago when hospitalised. It was only 5 years after my symptoms started my tests started showing positive for IBD. You can't give up, if you don't have hope you don't have anything imo.


----------



## Kimberly27

How are you doing?  Any thoughts of where to go from here?

I hope things are improving for you both.  The way you and your daughter have been treated makes me sad.

Kimberly


----------



## pops14

how is your girl ?


----------



## Pink

Hi! Im so sorry you are all suffering!! My son went undiagnosed for years with episodic severe bouts of vomiting.  Bloods were always perfect, and even my son's MRI showed nothing "remarkable" except for thickening of the duodenum. The Dr was not going to investigate further, but I pushed for an upper Gastroscopy which ended up showing severe CD in the duodenum. Go get that second opinion. Good luck to you! I hope you get some answers!!


----------



## Niks

Hi. Thanks everyone.

She isn't doing too bad! Ferritin low, but other than that better than she has been for such a long time.

Not vomiting every day! She has had a fair amount of bleeding and still needs a lot of sleep, but pain much better and she isn't constipated at the moment!! 

Just have everything crossed that she Continues to feel better.

Thank you Pink. I am glad you finally got things sorted for your boy. If any of J's symptoms get worse again I shall be pushing for another opinion.

Xx


----------



## CarolinAlaska

I am so glad Jayme is doing better!  I hope she never has to go down that road again.  She getting iron infusions or is she not that low?  Praise God for some relief for her!


----------



## Trysha

Hello Nike
How is Jaime?
Hopefully continuing to feel better
It is incredible how time has marched on and you have so little to show for it.
Unbelievable that Oxford was not helpful.
Any more thoughts on St Mark"s ?
Hugs
Trysha


----------



## Farmwife

I hope all is well. Hugs


----------



## Niks

Hi everyone

Jaime has still been much better.  She has only had the odd day of sickness.  She is taking iron and vitamin D supplements.  

She is still getting tired, but much better, has gained a little weight too.  So unless things change going to leave well alone!!

I just hope this isn't going to be a pattern.  She had a bad flare at 15, which lasted around 4 months. At 17 for about 6 months and 19 well over a year!

Really hope that what ever is going on is now over with!  Her bowels are better, she is going pretty much every day.  

I really hope that all of you guys are doing well xxx


----------



## Farmwife

That's great news and I hope it last. Enjoy every second of good health.......both of you.:hug:


----------



## kimmidwife

I am so happy to hear good news! Wishing her continued good health and happiness!


----------



## Sascot

Good news. Hope it lasts a long time!


----------



## CarolinAlaska

I'm so glad that this has finally found some resolution for her Jamie!


----------



## Jmrogers4

Hope it continues in the right direction.  So glad she is feeling better.


----------



## vtfamily

Niks,

I'm so glad you've had a period of "peace," finally.  I hope it continues!!!

Cheryl VT


----------



## DustyKat

Hallebloodylujah! :dusty: 

Fingers, toes and everything else crossed that this lasts a very long time Niks. :heart: 

Dusty. xxx


----------



## DustyKat

How is everything going Niks? 

Thinking of you. :heart:

Dusty. xxx


----------



## Niks

Hey!  Haven't been on for so long!  Hope you and yours are all doing okay

Jaime has been doing great..... Until this last few weeks!  Vomiting creeping back in.  And back pain.  Abdo pain always there but not severe.

I had a call from her boss on Tuesday, saying she was in agony and had passed out twice in 5 minutes.  Back to A & E.  Her pain was in her left back kidney area, it was so severe that she literally struggled breathing, her pulse rate was going up to 190.  She was passing out every few minutes.  She was hysterical when she was conscious.  We thought it might be another kidney stone, but no blood in urine this time and no infection.  Bloods as usual all fine. 

After about 3 hours it died right down and they sent her home.  Only for exactly the same thing to happen on Wednesday!  This time they put her on gas and air.   Couldn't get a drip in, her veins just kept collapsing.  They did do an abdo xray to discover that although she thought that her bowels were working fairly well, that she was extremely backed up.  So we are now 2 citramag and 6 senna later, a lot of vomiting and feeling absolutely dreadful,  That extreme pain has not returned though.  Can severe constipation REALLY cause this much pain??  I cannot find ANYTHING that is as extreme as she seems to suffer


----------



## pops14

Oh  niks,
 poor love so sad its back l have been thinking a lot about her lately, my brother inlaws niece is very poorly early twentys very similar symptoms to Jamie  severe pain conspation obstructing severe weight loss, uninary retention, had masses of tests, they think its gut failure caused by an area ?size which has no nerve supply so no peristalsis. she is waiting bed at UCL. L in for inflixi today so asked his gastro nurse she though it could be Hirschsprung's disease   usually diagnosed soon after birth but if history of childhood constipation can not get diagnosed till early adulthood. worth looking up.  do hope this helps my heart goes out to you.
  Time to get referd to proff forbes at UCL 
Pops xx


----------



## Niks

Thanks pops.  She really had no problems at all until around 15 and then was thought to be gynae, so no bowel investigations until 18.  I have been searching and searching trying to work it out, but all they can come up with is IBS.


----------



## Niks

Your niece seems to be getting further than us!!  How are they treatting her?  Hope she gets sorted soon too xx


----------



## Sascot

Sorry to hear she is getting worse again! Hope they do something useful this time


----------



## pops14

Look it up it maybe worth mentioning but l think she needs to be seen  in London enough is enough. El was on pethidine for days with the pain sounds so similar.pops xx


----------



## Niks

Yes, I think so too, will check it out, thank you xx


----------



## vtfamily

Cheers for the nice long stretch of feel pretty well!  It's important to celebrate those little victories!

Too bad it wasn't longer lived.  I'm so sorry Jamie is feeling poorly again.  I hope both of you are able to quash it more quickly this time around.

Best wishes and prayers.
Cheryl VT


----------



## DustyKat

It is so fab to hear that Jaime had a break from all the crap she has been through Niks  but how awful that it is all raring its ugly head again. 

Sending much love and loads of luck that you soon have answers for you lass. :ghug: 

In my thoughts hun. :heart: 

Dusty. xxx


----------



## Daisy123

Professor Forbes at UCL used to be my consultant, lovely man. I now see Dr Nightingale at St Marks where I have been going for 30 years. I can ring my IBD nurse anytime and they will get back to me. I think you need to push for a London referral, i like being at a specialist hospital because everyone knows what you are going through.


----------



## kimmidwife

Niks,
So sorry to hear that this has come back! I hope you guys are finally able to get a referral to the big guns! I am glad she had a break for a bit but sorry it was only short lived. It is so frustrating! Sending you both a big hug!


----------



## Niks

Okay, sorry not been on here for a while, been absolutely mad at work.
Jaime not been bad, but has a broken rib, is black and blue!  She has no idea how she did it, (she doesn't drink).  The Dr thinks because of weak bones it could have even happened in her sleep!  Great!  She says it isn' t really painful (2-3 out of 10)

Anyhow the last few days, for the first time in months she has blood in toilet!

She showed me lots of blood that had dropped to bottom of the toilet with some very big floating clots. (bright red)

She feels okay though and she has also retained the weight she gained.  Urrrgghhh, just hope it's not starting all over again!

Hope you guys are all okay, just going to go through posts xxx


----------



## DustyKat

Thanks for the update Niks. :ghug: 

I am so sorry to hear about the broken rib. Ouch!  

I hope this latest episode with blood doesn’t augur a setback. Fingers, toes and everything else crossed that lady luck is on Jaime’s side! 

Thinking of you. :heart:

Dusty. xxx


----------



## pops14

Hi Niks,
Could be piles if its that fresh, do hope its not relapse poor kid has been through enough.

Pops x


----------



## kimmidwife

I hope her rib heals up real fast. Sorry to hear about the blood. I really hope things are not starting up again.


----------



## Daisy123

I fell over last year and damaged my ribs, one of the most painful experiences ever. I had to roll in and out of bed for well over a month as it hurt so much to move. Poor Jamie, as if she doesn't have enough to deal with. I hope she recovers soon and there isn't a nasty flare starting. :ghug:


----------



## Niks

We've gone from pretty good to pretty awful in the last few weeks.

The only thing that is working at all with Jaime's bowels is Citramag.  Her vomiting is back with vengeance and she is often vomiting blood.  Last week she had to be catheterized as she just  couldn't urinate!  And to top it all off, today was blue lighted to hospital with severe chest pains.  I really don't know how she is still going.  ENOUGH ALREADY!

While she was in today, her chest pain eased, but she had blurry vision in her right eye.  Her right side of her mouth dropped and she couldn't drink without it dripping out of her mouth.  Not great!

I left her at 11.30pm, she was still waiting for a Consultant, they said it could be in the morning.  The feeling has come back in her face, but she had another bad attack of chest pain.  ECG normal.  

I think her bowels are just starting to affect every part of her body now


----------



## Catherine

Oh Niks!!  I don't know what to say.  Just know I am thinking of Jaime.


----------



## Sascot

Oh no! So sorry to hear that! Really hope they get some answers soon.


----------



## Niks

I'm not holding my breath on answers soon!  She had  Urinary CT Scan last week, and appointment on Tuesday for results from that, but Gastro Appointment keeps getting put back and I know that this is where all her problems lie.

She really needs to be referred to London, but until she has her appointment we can't insist this happens :ybatty:


----------



## Jmrogers4

I'm so sorry she is still having so many problems.  Absolutely agree referral to London is warranted. Big Hugs!


----------



## Sascot

Surely with this emergency admission they could speed up the appointment? You could start nagging the secretary for any cancellations (that's what I usually do )


----------



## Farmwife

Oh Niks:hug: I'm so sorry Jaime is back to feeling so ill.
Is she having blood in the stool also?


----------



## Niks

Will see what comes of this admission.  I doubt nothing will!

Farmwife, she has had blood in stool, not always, but she rarely goes now without using Citramag, and then what comes out although like water is very dark.

She is also intermittently peeing blood!  Coming from all directions, and yet still her bloods are normal!


----------



## Farmwife

I can't believe your dear girl can go through ask this and still not have answers.
Is she able to work? Is she able to live on her own?


----------



## Niks

She lives with me, but I don't like leaving her on her own too long!

Yes she still works when she can! It tends to be work that call ambulances when she's bad. 

This morning she tried toast and immediately vomited. She then had the really severe chest pains lasting 45 mins. Has anyone experienced this? Also has anyone experienced urine retention?  These are new things to her.


----------



## Catherine

My then 2 year had urinary retention due to UTI and kidney infection.  She also had a fever and was vomiting bile.


----------



## Niks

Thanks Catherine.  She didn't have a UTI, the Doctor she saw was convinced it was because her bulging bowels were pushing everything out of place.

I didn't even know that could happen, but I guess it could make sense.


----------



## pops14

Hi Niks,

so sorry to here your girl is so bad again, way back I told you about a friends daughter, she has very similar symptoms to Jamie vomiting abdo pain, massive weight lossvery poorly, she has had loads of test weeks in hospital they have discovered her large bowel has lost its nerve supply so no peristalsis she is currently being fed by a tube into her small bowel and needing alternate day enemas and citramag. she has had urinary  retention problems too, she is currently waiting for appointment to gastro at UCL, they do not know for sure what caused the nerves to die but think it maybe an virus. her Drs have been discussing her case with Drs in US.
I don't know if this helps but her disease pattern is spookly similar.
pops xx


----------



## CrohnsKidMom

Your poor girl.  This must be so tough on all of you.  That appt needs to be moved up, not back.  I hope your daughter gets the attention she needs and starts feeling better soon.  My thoughts and prayers are with you.


----------



## kimmidwife

Niks,
I was just thinking of you guys. So sorry to hear that Jaime is doing so poorly again. I am concerned about the pai she is having on vomiting. It is possible to get a small hole in the esophagus from vomiting. That can be very serious and needs to be treated immediately. Please mention this to the doctor.


----------



## my little penguin

Did they at least do an ultrasound to look at her kidneys -
Kidneys stones can also cause a lot of what you described .


----------



## Niks

MLP - she had a urinary CT Scan last Thursday.  The Drs said today it was normal, but she has appointment next Tuesday with Urology.

Pops!  I wish I could find something online about this condition!  I really think it sounds to close to be a coincidence too!  Thanks for this.

Thanks everyone else for your kind words and thoughts xx


----------



## pops14

Hi Niks l don't think you will the poor love has had every test under the sun and still no definite diagnosis, the nearest is an condition called hirschsprung this condition is normally diagnosed as a baby but  l have seen it can be missed and be diagnosed in adult hood, she had a laparoscopy and nerve biopsies they have found her nerves feeding the large bowel are just not working. she is back in hospital again they hope her local hospital will transfer her up to UCL. if l here any more l will let her know what would be ideal is if you can get Jamie refer to ucl too if they had them both with such a rare condition it may shed some light and help for both the girls.

Much love  pops


----------



## Johnnysmom

www.ncbi.nlm.nih.gov/pubmed/19674017

Hirschsprung's in adults, sounds spot on Niks.  Keeping my fingers crossed this information might help.  Sounds very fixable too.  Truly hope your girl gets some answers and is feeling better soon.


----------



## pops14

Hi niks,
Have heard today of another girl who has similar symptoms to Jamie apparently her drs think she has picked up an virus swimming abroad which has paralysed her stomach so what ever she eats just gets vomited back she is in hospital on iv feeds . talk to jamies drs about this if she is still vomiting she needs replacement feeds how has she been over last few days.
pops x


----------



## Niks

Thanks Pops.

She's still vomiting all food!  She has lost 10lb in a week.  Luckily she had put on a good amount of weight before this flare.

I just don't know where to turn.  Swindon can't help her as it's gastro.  Oxford seem uninterested,  I have e-mailed them though with everything she's been going through.  

She's been taking Omeprazole and Ondazetron, which s reduced the chest pain episodes, but she is still getting them, just not every time now.

Johnny'smom - do you think they would have found Hirschsprung's in previous biopsies?

I just don't know where to go!


----------



## Sascot

Poor girl! Can they not send her to London now?


----------



## Daisy123

Sascot said:


> Poor girl! Can they not send her to London now?


I agree. I think you should insist. I saw a young girl at St Marks years ago who was so poorly because of years of steroids and hadn't been able to enjoy school and they turned her life around. Ask to see Dr Nightingale.


----------



## Niks

She's going to  call Oxford tomorrow.  Hopefully she can get them to refer her and urgently!


----------



## PatientlyMary

I read this whole thread with horror and dreadful flashbacks to both mine and my sister's awful young adult time with undiagnosed crohn's disease. I'm rooting hard for you both. Our mom has been through the ringer like you, (she's the one you need to talk to!)

I remember my sister refusing to go to hospital while she became septic from a ruptured bowel. High pain tolerance can equal poor decisions! When I was Jaime's age, I used to go to work on 45 minutes of sleep, on the potty all night with cramps, blood, ugh. 

You are a great mom! I hope she can see a crohn's expert, soon. I think some gastro docs think they know this disease, but they really, really don't. If that is what Jaime has. It's all so familiar to me. Also, I joined this forum just to keep track of Jaime's progress.


----------



## Niks

Aw thank you!

Did you and your sister have loads of negative tests?  At the moment every single thing she is eating is coming straight back up violently.  She had lost 16 lb in two weeks.  

She called Oxford, they said she has an appointment in September and to wait until then!  Just soooo frustrating!  She's getting us she upset as she feels so hungry all the time.

I took her to A&E in Oxford last Monday, the Doctor was lovely, but he said it is not an emergency so needed to be dealt with in Clinic and he would make sure that would be brought forward.  We've heard nothing though and I am not holding my breath!

GRRRRRRRR


----------



## my little penguin

Does she have ANY friends or family in London that she needs to visit soon?


----------



## PatientlyMary

Niks, the answer to your question is yes, but this was 30+ years ago. I was told at 16 that I did NOT have crohn's, but it was IBS and was 'nervous'. My sister's disease was found earlier on during a surgery, I think? She was still in her 20's. 

I went misdiagnosed for almost 35 years (no health insurance!) and had abdominal obstructions annually for the last 15 or so years. Nasty business, that.

My sister goes to Bassett Hospital in Cooperstown, NY. They have a team of crohn's specialists there, I'm headed there in October.

I think Jaime needs to give her system a time to rest. I put myself on 100% liquids for a month a couple of weeks ago. It stopped the constant nausea and barfing when brushing my teeth. Also, I've been so hungry that I threw up.


----------



## kimmidwife

Niks,
Can you guys try another emergency room to one of the better places? If you were traveling in the area?


----------



## Niks

I don't think St Marks has and Emergency Department, it needs to be referrals.

She's not any better.  I think trying just fluids will be a good idea, however she is vomiting supplement drinks and soup.  She is holding down sips of water as long as she takes it slowly.


----------



## Daisy123

I think with St Marks if you went into the main A&E at Northwick Park, she might get transferred across.


----------



## pops14

Niks ,go to UCL Northwick park is a dump you could get stuck on a ward there and be far worse off go to your GP and get him to refer her she has suffered enough.

Pops


----------



## Sudsy

Hope things have improved by now, Niks....How is your girl?


----------



## Niks

Things aren't great.  Her appointment at Oxford was something of nothing.  He kept saying that 'people with IBS who have a positive attitude always do much better'!  I could have hit him!

Jaime broke down.  He then decided he would arrange a gastric emptying study, which is booked for next month.  I have asked for this so many times!!

I asked for referral to London.  He said she should wait until after Gastric Emptying Study.

Since Jaime has had chronic pain, passing out, peeing blood, vomiting blood, rectal bleeding, so much that she has woken up covered in blood!  Several stays overnight for fluids and potassium.

She has had horrendous headaches causing vision loss in her right eye.  (Eyes checked and nothing showing on any of their tests).  They are following her up in a few weeks.  The headaches come and go along with the vision loss.  She finds patching the bad eye better than trying to see through it.

Yesterday morning she was on her own (was at work on sleep in).  She called our NHS helpline who called her an ambulance.  She was in A&E for 8 hours, trying to get pain under control.  They had her drink a Citramag (she had taken one the evening before).  Once they knew she had held it down let her home.

Once home and Citramag started working she was passing stones in her stool!!!  What the hell is that all about?  Poor girl.  So GP appoint today.  Is sending her for scan on Monday with query gallstones.  

Seriously, is there anything else?  

IBS can be bloody rotten sometimes!!!  GRRRRRRRRR


----------



## Daisy123

Is it your GP how has told you to wait until after the gastric emptying? I am extremely concerned as to how ill your daughter is and how badly she is treated. You could book a private appointment at a London hospital, and then if they take her on she can be transferred back to NHS. This is what my parents did.


----------



## Niks

No it was Oxford who want her to wait!

She has Scan on Monday and Gastric Emptying on 16th Oct, so hopefully one of them will show something.

She had bloods done yesterday and apart from potassium being a little low, everything else is fine.  I really think this is the problem!  Her bloodwork is always spot on (apart from B12 and Ferritin in the past).   I just don't think they believe that she goes through all of this


----------



## Daisy123

My bloods are usually fine, although I struggle with potassium levels. A second opinion is something that your GP can arrange. I just think the way your daughter is being treated is appalling.


----------



## Niks

It's a nightmare.  She has gone back to keeping a diary of everything.   Hospital admissions, symptoms, pain levels etc and I have told her to take pictures of everything.  She has pictures of the stones in her stool, I think that's what made GP refer her for urgent scan.

Her weight is still dropping, but not as fast as it was.


----------



## Catherine

What color were stones?

http://ibdcrohns.about.com/cs/otherdiseases/a/dbgallstones_4.htm

Blood is never a symptom of IBS.

Uk guide to treatment of IBS.

http://www.nice.org.uk/guidance/cg61/chapter/About-this-guideline


----------



## Niks

Hi Catherine

The stones are right yellow. Some bigger ones but a lot of gritty sandy bits too.

I know that blood isn't a symptom, but because they can't find any other diagnosis, and shad had a fair few tests, IBS is what her Doctor says she has!! 

Thanks for links. I doubt scan on Monday will reveal anything, we'll see!!


----------



## Catherine

I suggest is to read the guidelines and be ready to point out where J doesnot meet the guidelines.

Also if the GI is saying this IBS, have they tried any of the treatments mentioned in the guidelines?


----------



## Niks

Mostly she's tried everything.  Laxatives just don't work except for Citramag, if she keeps it down.

Diet makes no difference and CBT therapist told her it was medical, so couldn't help.

I have researched other reasons for stones in faeces and came up with fecaloma.   http://en.wikipedia.org/wiki/Fecaloma

I guess this could be the problem, considering her chronic constipation,


----------



## Catherine

If she has the stones again she needs to get a sample.

The most common form of gallstones are yellow.


----------



## Sascot

Thinking of you. Still cannot believe you are no further forward!


----------



## Ands

Good luck for your daughters scan today Niks.

Thinking of you.

Xxxx


----------



## kimmidwife

Good luck for the scan, hope they figure something out!


----------



## Niks

Thanks everyone 

No stones!  So not gallbladder.  So pinning everything on Gastric Emptying.  I have  a feeling nothing will be conclusive with that either!

Just running out of steam.  She is no waking up in agony pretty much every night, vomiting bile throughout the night, and everything she's eating throughout the day.  

Just hope for her that what ever this flare is, eases off really soon!


----------



## vtfamily

Niks,
My heart is breaking for both of you.  It is surreal that Jamie is continuing on without any medical diagnosis progress.
Lots of Hugs and Prayers going your way!
Cheryl VT


----------



## Niks

Thank you!

She has been in Swindon since Tuesday with pain more extreme than ever.  I videoed her in A&E to show her Doctor.

Her pain comes on so quickly and she is in and out of consciousness.  Every single nurse/Doctor is pretty horrified.  

She lost 3lb in 3 days so they are now monitoring her intake and vomiting.  Needless to say she is holding no solid food down.  We have certainly  been here before, but her pain levels are far worse than ever before.  She is passing out upto 30 times per episode and for up to 5 mins at times
The Doctors in Swindon have liaised with Oxford and they are just 'trying to keep her going' until the 16th when she has her Gastric Emptying Scan.

I wanted to upload video to see if anyone else had seen anything like this, but it's too big.

Does this sound familiar??  http://www.dailymail.co.uk/health/a...covers-youngest-Briton-gastric-pacemaker.html  This story could be about Jaime!

She is very fed up poor girl.


----------



## Niks

One question - no anti-sickness is working at all.

They gave her 2 Citramag on Wednesday and trying to get her to drink 3 Klean-prep today, without much success!!

If she has to eat a small 'meal' eggs for instance for Gastric Emptying Study and vomits it up immediately, will the test be negative?  I can't see how she will tolerate it


----------



## my little penguin

You can do both a liquid and a solid study.
My oldest did both.
That way you can see at least one.

I think there are rules on how fast you vomit and how much .
Liquids just a few oz of liquid 
Solids -one scrambled -had to eat it all
Toast plus water optional 

Good luck no standards by the way so it's hit or miss for dx .


----------



## kimmidwife

Good luck! With the study when will it be done?


----------



## Niks

Thanks MLP.

Her test is on 16th Kim.  I am really concerned that she'll vomit it all too quickly so will be inconclusive!


----------



## kimmidwife

Niks,
I will be praying that she does okay. Have them give her a strong antinausea medicine beforehand. We are using a new antinausea medicine, called Granisetron HCL. It works better then zofran. Maybe you could see if it is available there.


----------



## littlemissh

Hi Niks,
Most of the anti nausea meds don't work for me either (I have gastroparesis). The only ones that help marginally are levomepromazine injections and ondansetron. At the time of the gastric emptying study though I wasn't able to take most of the anti-emetics as they affect the results, but some can be had so I would ask now about what can and cannot be taken. It would be much better if she could have what she is allowed intravenously or sub cut. 

Are they giving her iv anti-emetics whilst she is an inpatient?


----------



## Niks

Yes littlemissh they've tried IV anti sickness, but nothing seems to help.

I haven't heard of Granisetron HCL, I will ask!  Thanks Kim.

They have tried yet another two Citramag today, but apart from pain relief that is all they keep doing.


----------



## kimmidwife

Ugh! Your poor baby. Have you asked them about a referral elsewhere?


----------



## Niks

Yes! They are waiting until after Gastric Emptying Study. If nothing comes from that I'm going to pay for her to be seen privately in London xx


----------



## Niks

Well they sent her home!  

FFS - not holding any food down.  Severe pain and yet she's back home.

I just don't know how they think she can keep going like this


----------



## kimmidwife

That is beyond terrible!!!!! Sending her and you both hugs!


----------



## Niks

Endoscopy is useful to exclude mechanical obstruction of the esophagus,
stomach, duodenum, and colon. Standard mucosal biopsies do not sample
the deeper muscularis propria or myenteric plexus and cannot be used to
make the diagnosis of CIP per se. Mucosal biopsy specimens can demonstrate infections  (eg, cytomegalovirus. Epstein-Barr virus) or infiltrative
disorders (eg, amyloidosis). *Small bowel biopsies may be confusing in this
setting, because patients with chronic small bowel CIP. may have villous
blunting indistinguishable from celiac sprue [172].* Endoscopically or
surgically obtained deep suction rectal biopsies can identify HSD and other
familial visceral neuropathies.

Just found this on http://medicina.iztacala.unam.mx/medicina/Diagnosis and treatment of chronic.pdf

The more I read up on chronic intestinal pseudo-obstruction and chronic gastroparesis, I think this is what her problem is, either one or the other or probably both.  When I read about biopsies being confused for coeliac disease seemed to cement this, as this was her initial diagnosis!

It makes me so cross that she is expected to 'have a positive attitude'.  She is in agony and literally projectile vomiting any meal she eats.  Small dry snacks or chocolate, she seems to do better with.  The bad side of this is if this is her actual diagnosis there seems very little that can be done about it!!


----------



## Niks

Does anyone know if bowel problems can have an effect on eye sight?  Jaime had horrendous headaches leaving her left eye pretty blurry. (she thinks brought on by vomiting)  She was tested at the hospital and her left eye has improved a little but her right eye has overcompensated and she now has to wear glasses all the time, with corrections on both eyes.

Her eyesight was absolutely fine 6 months ago!


----------



## happy

Have her see a retinologist. Extreme vomiting can cause a valsalva retinopathy that affects the blood supply in the eye. This sometimes happens to people after they are sick from drinking too much alcohol.


----------



## Niks

Hmmm, thanks Happy, she doesn't/can't drink alcohol, but I guess the result maybe the same.


----------



## happy

Yes, I didn't mean to say that her vomiting was from drinking alcohol, but that the mechanism of an eye injury could be the same.


----------



## DustyKat

Niks said:


> Does anyone know if bowel problems can have an effect on eye sight?  Jaime had horrendous headaches leaving her left eye pretty blurry. (she thinks brought on by vomiting)  She was tested at the hospital and her left eye has improved a little but her right eye has overcompensated and she now has to wear glasses all the time, with corrections on both eyes.
> 
> Her eyesight was absolutely fine 6 months ago!


Certainly with IBD they can Niks. These are the ocular EIM’s…


Conjunctivitis
Uveitis
Iritis
Episcleritis
Scleritis
Retrobulbar Neuritis
Crohn's Keratopathy

Sarah had ocular issues associated with headaches, very migraine like, that plagued her until remission was achieved. 

I hope Jaime will alright hun, bless her. :heart: 

Dusty. xxx


----------



## Niks

Thanks Dusty xx


----------



## my little penguin

Has she tried erythomycin ?
My oldest is on this (perfect gastric emptying scan)
Seems to help move things in the stomach through .
Would her gp let her try something that improves stomach movement ?


----------



## Niks

Hi MLP.

No she hasn't tried erythomycin.  It would be worth looking at though!  Thank you.

Her Gastric Emptying Scan is next week, as I said I don't think she she'll hold down the meal.  So will wait until after that before she tries anything else because if could affect result.

Initially I thought her vomiting was due to chronic constipation, but in hospital she was having TWO Citramag every other day.  She must be cleared out by now, especially as nothing much going through.

She doesn't seem to be able to open her bowels at all now without Citramag


----------



## my little penguin

Definitely try it after the emptying scan.
Good luck on the scan


----------



## kimmidwife

Niks,
The constipation is also a sign of gastroparesis. Since my daughter started with the gastroparesis she can't go without taking miralax daily. Though once she does go it is always diarrhea. Since her intestines don't move properly the stool won't move unless the Mirlax helps it get through. It is a viscous cycle.


----------



## Niks

Thanks Kim.

xx


----------



## kimmidwife

Niks,
I just found out about this,
https://www.crowdmed.com/?utm_medium=cpc&utm_source=facebook&utm_campaign=interests-wellness
It helps people find out what is wrong with them. Sounds really interesting. You may want to check it out. Maybe it could help your daughter.


----------



## Niks

Thanks again Kim!  It does look interesting ! xx


----------



## Niks

UPDATE!

Jaime managed to keep down Gastric Emptying Study,  She promptly vomited as soon as she sat up, and had to really fight it, but at least they got a good study!

She had results appointment today (only because I complained to PALS) and saw her actual GI.

He faffed around about everything.  I showed him video of her in agony, passing out, and heart rate up to 180, then going straight down when unconscious.  He said this is 'normal' for some people in extreme pain.  Oh well at least we're acknowledging extreme pain at last!

She told him about waking up in a pool of blood, having to wash all her.   bedding for 7 days in a row.  He wrote it down, no comment.  He said he just couldn't explain why Jaime gets so sick and has such agonizing pain.

I showed him a paper with highlighted areas on things that happens exactly to Jaime, with Gastroparesis and Chronic Intestinal Pseudo-obstruction,  He said he'd thought about both for Jaime.  (he has NEVER mentioned either!)  GRRR.

After a good 45 mins, I asked about the Gastric Emptying Scan.  He was pretty flustered, but said he always knew that it would come back positive for her!!!  WHAT??  Apparently she does have Gastroparesis, however he thinks this is just the tip of the iceberg of her problems.... WHAT again????  Last time she was there she had IBS!

Do we want another opinion as he has hit a brick wall!  YES!  So he has now referred her to a Dr Emmanuel at University Hospital London!  Not St Marks, but surely has to be a start. 

She is actually feeling better this week and holding down some smaller meals, and pain is so much better.... Sods law huh!


----------



## kimmidwife

Glad she is feeling a bit better this week. Very glad to hear he is at last taking things seriously. Have you been able to find out any info on that doctor he referred her to?


----------



## Sascot

Glad something showed up at least. Hope they can get the London appt fairly quickly. Hope she continues to feel a bit better for a while!


----------



## B Baker

Hi Niks,

So pleased your finally being referred on. The nhs has a very bizarre system these days, I'm still trying to work it out. Have had similar experiences to you, with the 'blame the patient' tactic and once you go in armed with evidence/information and are determined, they refer you to someone else. I assume it's because they are out of there depth. The doctor you saw definitely was, I bet he was squirming. It's so sad though, they don't have the knowledge/ inclination to help you, so instead of holding there hands up, they blame you, the patient and blatantly lie, crazy!!

I will keep my fingers crossed this doctor helps your daughter, she has gone through too much. I have been to the ucl and was under prof Forbes, I had a good experience.


----------



## my little penguin

So glad they gave you a referral
Did they at least give her meds for the gastroparesis until they figure out what else is wrong?
 I know the meds made a big difference for my older non Ibd kiddo .


Hope they get her in quickly .


----------



## Catherine

Sound like your new specialist has a big team.

https://www.uclh.nhs.uk/OurServices/Consultants/Pages/DrAntonEmmanuel.aspx

I had to look up his specially:-

http://en.m.wikipedia.org/wiki/Neurogastroenterology


----------



## vtfamily

Wow!  Sounds like it was a big day for you.  It isn't easy for the docs to admit they are out of their depth and need to pass a patient on to someone with more experience.  Hopefully, you will be able to have a better starting point with the new docs, where they acknowledge it must be something else, something big for Jamie to be referred to them to start with.

Best wishes!
Cheryl VT


----------



## Niks

Thanks everyone!

MLP - Jaime has already taken metocopromide with no change in her condition.

Her GI wanted to wait to see what Dr Emmanuel thinks.  I have done research on him, and worried about this!
http://www.youtube.com/watch?v=Rw_U7P07vK8  I am wondering if her GI thinks he will confirm IBS as her main condition and has referred her to  basically shut me up!  

Now not feeling so confident but will go armed with a list of everything that has happened with her.


----------



## Catherine

Just because her GI believe it IBS doesn't mean a "IBS" specialist will.


----------



## Clash

I would go to every specialist going forward with a firm statement of, "Since IBS is a diagnosis of exclusion and it has been determined she has gastroparesis, I no longer will consider IBS an explanation of her symptoms until serious consideration has been giving toward her gastroparesis and treatments have commenced to help her in that regard."

I know gastroparesis is not a dx you all wanted to hear but going forward I would wear it like a badge and not let one medical professional forget that her symptoms are more likely a result of that dx and not some extreme case of IBS.

Hugs and I hope the path going forward is one where her specialists will truly listen and understand the suffering she has faced!


----------



## kimmidwife

Niks,
I agree with Clash. Approach him from the begining with the attitude that we have proven through testing that this is not IBS. Fingers crossed for a good experience with him!


----------



## Niks

Thanks ladies!

Let's hope this appointment is sooner rather than later xx


----------



## Sascot

Give it a week then phone his secretary and make sure she has your mobile number. Let her know that you are desperate for any cancellations


----------



## pops14

Hi Niks
sorry l have been busy and had not checked up for a while so pleased you have eventually been revered to London my sister niece l told you about has been seen at UCL has had shed loads of new tests do not know results of all, will try and find out she has been told it was caused by virus which has paralysed the nerves supplying her gut so no peristalsis , think they said floppy bowel ?? she and her parents have been very impressed by them. do hope you here about apt soon 
Pops


----------



## Niks

Thanks Pops, very hopeful!  No letter yet though 

xx


----------



## pops14

What's the news on your girl ?
Pops


----------



## Niks

Hi Pops.  

She's actually been much better over last few weeks.  She seems to have huge flare ups and then it eases off.

It is weird that she can go from being so poorly to being pretty much normal!  (She has had a couple of kidney stones, which has been a problem)

She STILL hasn't had appointment, but as she's doing ok right now I'm worried that if she's fine when she goes they'll think there's nothing wrong!  

It's her 21st on 21st December and she has booked to go to London with some friends and is so hoping that she continues feeling well!!

Fingers crossed


----------



## kimmidwife

Keeping my fingers crossed for her to have an awesome birthday!!!! Glad she is feeling okay now!


----------



## Niks

Finally had letter confirming referral to specialist in London, no date yet though!!

Her diagnosis now is

1.  Upper GI and colonic dysmotility with viscernal hypersensitivity.
2.  Predominant Constipation with slow colonic transit and moderate gastroparesis,
3.  Nephrolithiasis
4.  Osteopenia bordering on osteoporosis with previous T-score -2.5 at the spine with normal femoral neck and hip.  (however her neck and hip have now deteriorated to -2.2 on both. GP just had these results)

At least no mention of IBS!!!

I personally think her Gastroparesis is not moderate.  She was definitely starting to get better when she had the gastric emptying scan.  I think if they did it again at her worst she would come back as severe.  However at least it is a diagnosis at last!!


----------



## Catherine

Colonic - on the colon or effecting the colon

Dysmotility  - a condition in which muscles of the digestive system become impaired and changes in the speed, strength or coordination in the digestive organs occurs. In the normal small intestine, liquefied food and secretions including digestive enzymes are pushed onwards by waves of muscular contraction.

viscernal -  elating to the viscera.
"the visceral nervous system"

hypersensitivity - An excessive or abnormal sensitivity to a substance. A person who is hypersensitive to a certain drug will often suffer a severe allergic reaction (see allergy) if given the drug.


----------



## my little penguin

Visceral hypersensivity is fancy for Ibs

They used this term for Ds before remicade kickin


----------



## Clash

Agree with MLK, they had this on C's notes and when I asked they stated IBS. Of course they sang a different tune when the testing showed still active CD.

I do think it is awesome that they have stated moderate GP even though I agree with you that had they done the test during one of her declining times instead of when she was doing well it would have come out more than severe. It is just so great to hear that someone is finally listening and taking her symptoms seriously!

HUGS!


----------



## Niks

A person who is hypersensitive to a certain drug will often suffer a severe allergic reaction (see allergy) if given the drug.[/QUOTE said:
			
		

> Jaime has a severe reaction to cyclizine!  She used to be fine with it but a couple of years ago when in hospital (luckily) had anaphylaxis in the middle of the night after taking cyclizine.
> 
> Thanks everyone!  The Visceral hypersensivity is apparently because of her lower left abdo severe pain at times.  She always has pain there, even when well.
> 
> So now just waiting for referral!!


----------



## DustyKat

Thinking of you and your lass Niks. :ghug: 

:hang: Mum! :heart:

Dusty. xxx


----------



## kimmidwife

Hoping the referral comes quickly! Hope she is feeling okay!


----------



## Niks

Does anyone know if Gastroparesis can affect Bladder function?  

Jaime is more and more getting urine retention and for the second time had to be catheterized today.  She gets so bad that she looks like she's 5-6 months pregnant!  When they drain it it just goes back to normal.

She has had a couple of episodes of kidney stones and bleeding,  She saw the Urologist last week, who informed us that the last time she was in A&E back in November (she passed a stone while she was there and her urine was very bloody).  The lab tests came back with a really nasty infection.  She was not told about this and was not given anything to help clear it up!

He is putting her on long term low dose antibiotics and she has an ultrasound booked in January, they are going to scan her before and after she has urinated to see if she retains much.  At the moment though nothing is helping her.  She has tried sitting in a warm bath, running taps and anti inflammatories.  

Just wondered if Gastroparesis or bowel dysmotility might affect bladder function!?


----------



## kimmidwife

Niks,
I have read of other people with GP who have that issue. But I am not sure if it is related to the GP or because of their other diagnosis. It seems that GP is usually caused by something else and so is considered a secondary diagnosis.


----------



## Niks

Thanks Kim.

xx


----------



## kimmidwife

No problem. Hoping for better days for all of our kids!


----------



## xmdmom

This page http://kidney.niddk.nih.gov/kudiseases/pubs/UrinaryRetention/#sec3 lists the causes of urinary retention as

obstruction of the urethra
nerve problems
medications
weakened bladder muscles

Is she on any medications now?

Some people with abnormal gi motility have associated autonomic dysfunction that can cause urinary retension, and other symptoms (including abnormal sweating,blood pressure and heart rate fluctuations

Did they ever figure out why she was passing out a while back?


----------



## Niks

Thanks xmdmom

She still takes prucalopride and has a weekly change butrans patch.

Her passing out is due to pain,  her heart rate goes up to around 160, she passes out, it goes down and she comes round again,  Often this keeps repeating until her pain eases.


----------



## xmdmom

Butrans is uncommonly (.1-1%) associated with urinary retention. I'm glad she's being evaluated by the urologist.

What did the doctors who ordered the catheterization think is causing the retention of urine?


----------



## Niks

They blame absolutely everything on her bowels/constipation/vomiting!  They think that if she is really backed up, it could cause her bladder to be squashed and meaning it makes it hard to urinate, and her vomiting causes dehydration, causing kidney stones!


----------



## Catherine

What if it's the other way?  UTI causing vomiting which causes dehydration.

Have they checked for kidney infection?


----------



## Niks

The last time she passed kidney stone in hospital they sent her urine for cultures.  It came back with 'a very nasty' infection.  She was not told about this as once kidney stone passed she went home.

She only found out at her last Urology Appointment!


----------



## Catherine

My middle daughter has a condition called urinary reflux.

Urinary retention can be caused by a UTI.  A untreated UTI can result in a kidney infection.  A single kidney infection can result in scarring of the kidney.  Any scarring of the kidney increase your risk of high blood pressure.  

http://www.medicinenet.com/urinary_retention/page2.htm


----------



## pops14

Hi niks

sorry again for not being in touch for some reason l don't get emails anymore to say post updated. From what l have heard from my sister her niece has gone into retention she has severe GP and is pretty poorly . Drs have told her retention caused by same virus that's affected her bowel, l think it must be something different though as she has not had any good episodes poor love. UCL want to admit but she is refusing.
pops


----------



## Niks

Thanks Pops, I really hope that she gets better soon!  xx


----------



## B Baker

Hi Niks, 

How is your daughter getting on? I was wondering if she had ever been investigated for parathyroid problems? Or had a calcium blood test at any time and it was either over or under range?

I'm am currently being investigated for this as my bone density has decreased and they are trying to find out why. Since being told this I have being doing more research on the parathyroids and it seems hyperparathyroidism causes low bone density, kidney stones constipation, abdominal pain & a lot more and this is when I thought of your daughter. It can be caused by a few things, but there is a secondary hyperparathyroidism that is a consequence of bowel disease eg coeliac/crohns.

I thought it was worth mentioning and possibly ruling out


----------



## Niks

Hi B Baker

Thank you so much for your message.  She certainly has a lot of those symptoms, I will do some research! 

Unfortunately we are at a stand off with Oxford, she STILL doesn't have referral to London, and it is driving me crazy, but she hasn't been too bad through this flare, not once admitted to hospital!!

Thank you.  Will take a look

x


----------



## B Baker

Wow, that is terrible, pleased she's not been to 'bad' lately but that is soo not the point.

I hope you hear from them soon, but if you don't and she worsens, I would if at all possible find a consultant you like, ideally in London that works both private and nhs (in a London nhs hospital- they have so much more to offer test etc wise), pay for the initial consultation and most do put you back in the nhs to see them. Unfortunately, I've had to do this more than once, but they seem to take you more seriously this way and it moves things on a hell of a lot quicker. 

Really hope you get some answers soon, all the best, Beth Xx


----------



## Niks

Ok so quick reply as off to work soon.  

Has been manic, we've moved house.  Everything that could have did go wrong!  Have decided to do a degree in Leadership and Management for Social Care, which is a lot of work and on top of that my sister got diagnosed with Breast Cancer, her prognosis is good but have signed up to do a 20 mile walk next weekend so trying to get some training in!

Jaime has been on the whole much better.  A couple of hospital admissions, but generally her pain and vomiting is much better.  She has had more problems with urine retention, vomiting blood and black tarry stools and bright red rectal bleeding.  

She finally saw the most amazing doctor at University College Hospital in London last week!  She read referral letter and asked her her main symptoms.  She then ignored referral letter and started from scratch!  It was like the first time anyone had every listened to her!  She was shocked at all the previous diagnosis.  

She has referred her to a top Urologist and prescribed a new medication, although she hasn't started it yet and I can't for the life of me think what it was called, but she wants her to take it alongside Prucalopride.  Pruclopride apparently can stop working on nerve receptors so it needs to be stopped periodically for 2 weeks and then restarted.  She has never been told this!  She asked if she'd had 24 hour cortisone testing and several other tests that we'd never heard of.  She tested a lot of bloods that have never been done before.  

She wants her to try irrigation, which she's setting up in Oxford if they can do it if not back to London, and she thinks she would be high priority to have a pacemaker fitted!  She wants to see her again in 4 months.

We came out of there thinking that finally we were getting somewhere!!   

I hope that all of you and yours are doing okay, I really haven't been on here for so long.


----------



## kimmidwife

Nike,
So very glad to hear! it sounds like she is finally in with a good doctor!!! Keep us posted, I was just thinking of you guys!


----------



## pops14

hi niks
Wow you are busy sooo glad you finally got to see them at UCL my sister says they are wonderful, do keep us posted what they come up with 
pops


----------



## Sascot

Wow, so nice hear a doctor is taking things seriously! Hope your sisters treatment goes well


----------



## Niks

Pops what did they decide was going on with your sister's niece?  How is she doing?

Thanks everyone!    xx


----------



## pops14

Hi Niks
Been racking my brain trying to remember the name of syndrome but basically she has an abnormality with her Autonomic nervous system causing her peristalsis to stop also her urology consultant has diagnosed Fowlers disease urinary retention UCL had her in for a month as she was so poorly after Christmas coping at home now, she shares similar symptoms to Jamie but hers don't come and go, all brought on by a virus they think, Jamie is certainly in the right place now they have been so thorough with her.
katie


----------



## Farmwife

So glad for some improvement in her care.
Hugs to you both.:ghug:


----------



## Niks

Thanks Pops, glad she is at home, hope she feels better soon.  I have looked at some Automomic Neuropathies and they do explain a lot with Jaime's symptoms so hopefully we'll get somewhere soon!!


----------



## Niks

So.... We now have a brand new symptom!  Numbness of face, pain around eye, but not behind and her face keeps dropping from time to time!  Her left eye lazy and at the moment she can close it, but Doctor thinks if it gets any worse this could change.  

Grrrr, CT scan was clear, but hospital calling her on Monday to see if she's any better to arrange MRI.  Doctor at hospital today thinks all could be linked!?


----------



## pops14

oh my niks   has she been seen at ucl yet ?
pops


----------



## happy

Could it be Bell's Palsy? If so she would need corticosteroids ASAP. 
http://www.ninds.nih.gov/disorders/bells/detail_bells.htm
http://www.cmaj.ca/content/186/12/917.full
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152161/
Bell's palsy is often misdiagnosed.

Good luck.


----------



## Niks

Pops, she's still waiting for appointment from Neurologist in London...  Neurology in Swindon are going to assess her on Monday though.

Happy, thank you we did wonder about this and the Doctor today considered corticosteroids, but as her symptoms come and go, and she said there are two types of problem, one that causes numbness/pins and needles and one that causes weakness, and she has both!  She has never seen this before!  The Doctor thinks it really could be connected to her Gastroparesis as they don't know the cause of this either yet!


----------



## happy

I am glad that it was considered as the treatment window is very short. 
So sorry to hear that your daughter is having more difficulties--but so glad to hear that she will be seen by neurology soon.
I was just thinking about you and Jamie a few days ago. Despite your daughter's additional problems, it is good to hear from you. 
How are you doing? Are you managing to stay well even with the additional stress? How is your Leadership Program going? And your sister--how is she doing?


----------



## Niks

My sister has just had her 5th out of 6 lots of treatment, and is starting to feel it, very tired and just feeling grotty, but doing great!  I am going out there (Sydney) at the end of August for 2 and a half weeks, I can't wait!

Course going well!  I didn't think I'd enjoy it and a lot of work but it's great thanks.

Am just looking through to check up on everyone else!


----------



## happy

Well glad to hear that other aspects of your life are going well. Tell Jamie we are all still thinking of her and we hope that she gets some answers and help for her new problems quickly and that her other ones are sorted soon as well!


----------



## vtfamily

Hugs and prayers.  So sorry to hear about this new complication.


----------



## Sascot

Hope the neurologist can maybe help piece together the puzzle. Crossing fingers her new symptoms don't get any worse. Have a good time in Sydney


----------



## Niks

Thanks guys, she got Neurologist appointment in London through today for 25 June.  Swindon should call her on Monday too.  Her face is still very numb, and she dribbles!  Which she is not impressed with but the droop has definitely improved


----------



## Mr chicken

Glad she got an appt
Hope you get answers soon !!!


----------



## kimmidwife

Hi Niks,
I was just thinking of you guys. Sorry to hear about this new symptom. Glad she got the appt though. Have a great time in Sydney!


----------



## Niks

Quick update!

Jaime through her flare and doing great at the moment, really hoping that it lasts longer this time.  She's started doing a Nursing Mental Health Course and so far coping well.

Her tilt table test was interesting, however didn't prove anything much.  She passed out twice, once with fast breathing exercises and the other time being tilted at 90 degrees.  This apparently only showed disassociated collapses.  

She is going to an appointment in Oxford tomorrow for training on Peristeen irrigation, this was recommended by consultant in London, and she is a little dismayed that this has only just been arranged for her.  This can be done daily and at home, so hopefully will help when she gets chronically constipated.

She has had several episodes of rectal bleeding, but no one seems bothered about this.

When unwell her main problems are holding down food and fluid, chronic constipation and pain.  When we were last in London I had to borrow a wheelchair as she was unable to walk more than a few meters and was in so much pain, was in and out of consciousness.  The consultant was horrified that she still hasn't got a pain management team on board,  (she still doesn't).

She has had several bad kidney infections, with a lot of blood in urine.  And also another kidney stone.  Urology just put this down to her bowel dysmotility, as they say everything is connected and has a knock on effect.

But.... At the moment all good.  Very little pain, bowels working better and able to eat and drink!!!  Really hope it lasts this time!

If only we could work out what triggers the gastroparesis flares, then maybe we could try to get on top of it completely!!  

Hope you and yours are all doing okay!!

xx


----------



## kimmidwife

Hi Niks!
Great to hear from you. I am glad she is feeling good right now. I wish you could figure out what is causing these flares as well. Fingers crossed that you get to the bottom of it and that she continues to have good days!


----------



## kimmidwife

Niks,
I am going to try to speak with some others who have gastroparesis and see if we can get some advice for you and Jaime and see if we can figure out some ideas of what her underlying diagnosis may be.
Can you list all her symptoms for me that she has ever had since all this started?


----------



## Sascot

Fingers crossed for her that it lasts! Hope they get the pain mgt on board soon in case.


----------



## Niks

kimmidwife said:


> Niks,
> I am going to try to speak with some others who have gastroparesis and see if we can get some advice for you and Jaime and see if we can figure out some ideas of what her underlying diagnosis may be.
> Can you list all her symptoms for me that she has ever had since all this started?


HI Kim

She started with Abdo pain at 15.  She had appendix  (not the problem)  out and then was referred to gynae.  

Numerous tests, and finally exploratory laparoscopy showed no endometriosis as thought, but inflamed bowel.  

Symptoms subsided, so she was treated for IBS from GP.  

She had rectal bleeding around 17/18 and was referred for colonoscopy, was given prednisolone foam for proctitis.  So second diagnosis was proctitis.  Soon after this her pain got much worse, she has severe abdo pain and she started vomiting.  She was (mis) diagnosed with, crohn's disease and then coeliac disease.  Coeliac from biopsies, which showed 'coeliac tendencies'. Gluten free did not help at all, so they have said she is not coeliac.

Since she has had chronic constipation, having to used citramag to clear bowels and even this doesn't always work and can vomit every thing she eats and drinks, and her pain is so severe, she often passes out.  She also has a lot of urine/kidney infections and bleeding, urine retention and stones.  This is apparently due to bowels being so congested.

She has 2-3 months of severe symptoms, followed by 1-3 months pretty much symptom free!  this has been the pattern for the last 3 or so years.

Her gastroparesis was finally diagnosed after many years of IBS diagnosis from the stomach emptying scan.  They decided she had moderate Gastroparesis, however she was at the end of a flare, and I am sure if it had been done a week or two earlier she wouldn't have tolerated the test at all.

Thanks for your help!!

Nikkie xx


----------



## Mehita

What led to the "un" diagnosis of Crohn's disease?


----------



## kimmidwife

Niks,
I have started doing research for you and one of the possibilities I have come up with that was mentioned on the gastroparesis forum is mitochondrial disease.
Take a look at the link, people do not have to have all the symptoms mentioned just some of them and she certainly fits the bill for some of them.
http://www.mitoaction.org/mito-faq#symptoms


----------



## kimmidwife

Here is another article,
It seems it is very often misdiagnosed and you need to look for a doctor who specializes in this.
http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934631


----------



## CarolinAlaska

I'm glad to hear she's bouncing back.  I remember when she was having such awful problems and wasn't taken seriously...


----------



## Niks

Mehita - None of her scopes or tests showed crohn's.  The diagnosis was given when she was admitted to hospital, but her consultant said it was wrong.  

Thanks Kim!  Will take a look!

X


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## Niks

Hmmm, she doesn't really fit into mitochondrial disease.  Also it says that siblings are 100% likely to have the same condition.  Both her brothers are absolutely fine.

I am really hoping the irrigation will keep her bowels going, which in turn will help with the gastroparesis!  But we'll see  

x


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## Maya142

Niks -- If they have diagnosed her with gastroparesis, what are they using to treat it? There are a number of medications that might help -- Erythromycin, Bethanecol, reglan and domperidone are all used. My daughter also has gastroparesis and has tried all of the above (except reglan which scares us!). She's doing better now on Erythromycin and has a GJ tube -- she cannot keep her weight up without tube feeds.

There is also a disease called Chronic Intestinal Pseudo Obstruction which seems to have some of the symptoms your girl has.

https://rarediseases.org/rare-diseases/chronic-intestinal-pseudo-obstruction/



> In individuals with CIP no such physical obstruction is present, hence the term pseudo-obstruction. Common symptoms include nausea, vomiting, abdominal pain, abdominal swelling (distention) and constipation. Ultimately, normal nutritional requirements cannot be met leading to unintended weight loss and malnourishment. CIP can potentially cause severe, even life-threatening complications.


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## kimmidwife

Niks,
This site says 25% of siblings will have it but also from what I understand is that siblings can carry the genes but be fine.
But what Maya mentioned also fits somewhat except for the fainting part, I didn't see that mentioned. I definitely think she has some rare type of disease. Is there are rare disease center somewhere by you?


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## Maya142

Is there any way you could get her to a motility center? I know of some in the US but none in the UK. There are many tests they could do that could shed some light on why she gets so sick.



> Colonic transit time (Sitzmark) study
> A colonic transit time (Sitzmark) study is a simple but effective method of studying how well the bowel propels food along. Normally, it takes only a little time for food that is eaten to progress through the small intestine into the colon. It then may take longer periods for the remaining material to pass through the colon and to be expelled as stool. There are several ways of performing the study. In some laboratories, for example, three capsules containing small markers are swallowed, one on each of three successive mornings (Days 1, 2 & 3). On the following day (Day 4) and three days later (Day 7) a plain x-ray of the abdomen is taken. All of the markers seen on the x-rays of each day are counted and added together. This number is the total transit time. This test is very useful for detecting different types of constipation.


http://www.aboutconstipation.org/site/symptoms/colonic-inertia


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## Niks

Sooo...  Thought I'd update on what is going on with Jaime.

She started doing Peristeen irrigation.  For an entire 3 months this worked like magic!  No vomiting and able to irrigate well, every other day.  Some pain, but generally did really well.  Then January it just stopped working.

She was in a terrible state, with no bowel sounds and absolutely nothing moving through.  She stumbled across a cororectal surgeon who was absolutely amazing!  Referred her for transit study and barium scan.  The same time during this admission she saw a surgical emergency doctor who couldn't understand why on earth she had been left with osteoporosis  with no explanation.  He did a blood test, which has clearly never been done before.  Her PTH level was extremely elevated!!  Symptoms of this are constipation, kidney stones, osteoporosis, reflux, headaches, just to name a few!!  

She has now got an appointment to see an  Endocrinologist.  

Anyway we went today to get results from transit study.  ALL of the markers were still there!  So they are starting applications for funding for a bowel simulator.  This won't be a cure, but will hopefully give her time before bowel surgery.  It could take months before funding is agreed, but at least something is being done!!  Thank goodness for this Surgeon.  I really think we would still be going around in circles!!

Hope you and your kiddies are all doing well!

Nikkie xx


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## kimmidwife

Very glad you finally have some doctors taking things seriously and that they are finally figuring things out! She has been to long without proper care. I hope this leads to treatments and her feeling much better!


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## B Baker

Hi Niks,

So glad you came across a good doctor, very rare in the nhs these days!! I had a high PTH too. From what I gather a high PTH can be caused by the parathyroids themselves and if that is the case it's a minor op to remove them and if like in my case it's due to malabsorption I have to take calcium and have my urine and blood calcium levels checked on a 6 month basis to make sure I'm getting enough.

Really hope all these tests give you some answers, all the best.


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## Sascot

Wow, thank goodness she got to see that surgeon. Fingers crossed the funding doesn't take too long. Such a relief when things actually get done, hope all this helps her a lot.


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## vtfamily

Niks,

Wonderful news!  So glad to hear that someone seems to finally "get it."  I really hope you have some good answers soon.

Cheryl VT


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## CarolinAlaska

Niks, what a relief to finally get some answers I'm sure!  I hope the PTH thing leads to a long-term fix for her.  I'm glad she had a 3 month reprieve with the Peristeen. Thanks for the update.


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## Niks

Hi!  Long time since I've been on here, but thought some of you may want to know what's happening.

Jaime is still really struggling.  The funding for the sacral nerve stimulator was refused!!  ARGHHHHHHHHH!  She was heartbroken and felt that her life would never improve.  

I did a fundraising page for her to trial the stimulator in November and managed to raise the full amount £2700 in just 24 hours, incredible.  She had the trial for 3 weeks at the end of November and beginning of December.  It worked better than we could have ever dreamed.  She was urinating frequently (normally once a day if she's lucky -  I didn't even know this!).  Her bowels started working pretty much immediately and within 10 days she was able to empty her bowels daily without irrigation.  This to her was a miracle!  She was able to go to work daily and she also was going out socially.  She said she felt 'normal'.  

The stimulator came off much to her relief (as it was stuck on her buttocks and she could not bath or shower throughout) on 20th December.  She was able to have a Christmas feeling fairly well, but has been going rapidly downhill ever since.  It seems that her bowels have just stopped working and she has had severe pain, passing out, vomiting, chest pain and last week was admitted because she had really blurry vision and lost the feeling in her lower legs.  This is new.  GRRRRR.  My first thought was B12.  They tested and said it was low 102 - but not low enough to cause these issues and not low enough for infusions.  I had a big arguement saying this had happened before with numbness and confusion when her level wasn't considered that low.  After three days of being in hospital they did another test to see how her B12 absorbs (I can't remember what they were called, there were two and they had to be sent off so didn't get results)  - She was then prescribed B12 infusions, so I guess someone else thought this could be a problem.  

She has had to have physio and is able to walk with a crutch but her legs go into spasm when she is walking, this seems to be slowly improving.  

We have re submitted the funding application with the evidence that the trial worked, but still no guarantees that this is going to be accepted.  

8 years later and still really no further forward, she is in fact much worse in herself.  

I really hope you and yours are doing better than she is.

Hopefully next update will be good news!!

Nikkie xx


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## Sascot

Really sorry to hear things have gone downhill again. Wish they could come up with something! Hope they give her the funding for the stimulator now that you have some evidence. Thinking of you both


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## DanceMom

My mother has a stimulator. It has been life changing for her. I hope your girl is able to get one as well. Thanks for updating!


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## Niks

Dancemom - does your mother have it for slow motility? In the U.K. They will happily find for incontinence, but they say that not enough research ahead been done for chronic constipation and slow transit xxx


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## DanceMom

Niks said:


> Dancemom - does your mother have it for slow motility? In the U.K. They will happily find for incontinence, but they say that not enough research ahead been done for chronic constipation and slow transit xxx


She had incontinence and constipation due to trauma during my delivery. She suffered over 30 years before receiving the stimulator. They did very little testing...just a colonoscopy (which was normal).


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## Farmwife

I Niks I'm so sorry!  I pray she gets what she needs!


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## CarolinAlaska

I'm really happy that she found something that could help her for awhile.  I'll pray that the funding goes through this time.  Weird that she crashed after.  I wonder if there was any connection.  Praying for long term solutions and hope for her.


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## vtfamily

So sorry to hear docs have not found a good, lasting solution for your family.  Hugs and continued prayers.


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## kimmidwife

Nikki,
I am so sorry to hear about Jaime. I was just wondering how she was so am glad you posted an update. I am really hoping she can get the stimulator. 
We have been going through so much as well. They think Caitlyn might have something called Ehlers Danos Syndrome. We have a million doctor appts over the next few months. It is just crazy.


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## Niks

kimmidwife said:


> Nikki,
> I am so sorry to hear about Jaime. I was just wondering how she was so am glad you posted an update. I am really hoping she can get the stimulator.
> We have been going through so much as well. They think Caitlyn might have something called Ehlers Danos Syndrome. We have a million doctor appts over the next few months. It is just crazy.


Sorry to hear she's not doing well.  I hope you get the answers you need soon.  :hug: xx


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## Niks

CarolinAlaska said:


> I'm really happy that she found something that could help her for awhile.  I'll pray that the funding goes through this time.  Weird that she crashed after.  I wonder if there was any connection.  Praying for long term solutions and hope for her.


Hi, thanks for reply.  The trial was a temporary stimulator that was stuck to her.  A tiny wire and electrode was inserted through her skin and stimulated the sacral nerve.  This triggered her bowel to contract and her bladder to empty properly.  Once it was removed 3 weeks later her bowels stopped...    Was expected.   xx


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## CarolinAlaska

Whatever happened with the elevated PTH and seeing the endocrinologist?


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## Niks

CarolinAlaska said:


> Whatever happened with the elevated PTH and seeing the endocrinologist?


He said it was a 'freak' result!!  The next levels were within normal range.

Her bowels are the main problem.  They were very slow, but now they just stop, with no bowel sounds.  Her gastroparesis is obviously going to be bad, with nothing moving from her stomach if her bowels can't move, so still vomiting lots.  For me, if they can get her bowels moving, then her stomach will follow, I could be wrong.  

The only thing that helps (not including the stimulator), is being admitted to hospital, given IV anti sickness (nothing else touches her), and IV pain relief, and then 8-10 picolax/citramag.  They normally try 2 twice a day.  She does still take them at home, but finds it difficult to keep them down.  

I just wonder why her bowels have completely stopped working.  It is like they just grind to a halt.  She still gets rectal bleeding and mucus from time to time.


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## kimmidwife

Niks,
Seems to me she really needs to see a specialist who deals specifically with these issues of motility to find out what is behind this.


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## CarolinAlaska

Yes, it is baffling.  We must not lose hope.  I hope that Jaime is finding ways to be strong through all this.  Let her know we are cheering for her and hoping/praying the NHS will approve her stimulator quickly!


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## Niks

kimmidwife said:


> Niks,
> Seems to me she really needs to see a specialist who deals specifically with these issues of motility to find out what is behind this.


She doesn't even have a Consultant anymore, she isn't 'under' any specialist, it is all so frustrating.  Gastro at Oxford pretty much ditched her when he realised that her bowel doesn't work, which is something that I'd been asking to be tested for years!  She moved on to a Surgical Colorectal Team, but since the stimulator was refused, she has also dropped her.  She has her GP and the private Doctor, who did the trial....  

I am going to see if I can find a specialist, thank you Kim xxx


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## kimmidwife

Niks,
That is just ridiculous. I wish you guys could come here to the states. That is just terrible.


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## kimmidwife

Niks,
Someone gave me this link to a Facebook page for people in the U.K. With GI motility issues,
https://www.facebook.com/groups/GIFTuk/

Hoping you can find some help for her.


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## Niks

kimmidwife said:


> Niks,
> Someone gave me this link to a Facebook page for people in the U.K. With GI motility issues,
> https://www.facebook.com/groups/GIFTuk/
> 
> Hoping you can find some help for her.


Thanks hun 

xx


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## kimmidwife

Niks,
Keep us posted!


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## Niks

Jaime called me today, hysterical.  She asked if I was sat down, I thought someone had died!!  She had a call from her nurse saying that her funding has been approved and she's having stimulator fillted on 17th March!  I can't believe it!  

Wooooo hoooo!!  After all this time, and it's so close now 
:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy::luigi::luigi::luigi::luigi::luigi::luigi:


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## DanceMom

Yay!! So happy for her!!


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## Maya142

That's wonderful!! It's so soon :dance:!!


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## my little penguin

:drink:

:mademyday:



Such great news


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## kimmidwife

That is amazing news!!!!!


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## Sascot

Fantastic! What good news :dusty:


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## Mehita

That's so wonderful!!! And about dang time. I hope it works for her. So does this mean she's back under the care of the colorectal surgeons??


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## Clash

Woohoo! Wonderful awesome news!


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## Niks

Mehita said:


> That's so wonderful!!! And about dang time. I hope it works for her. So does this mean she's back under the care of the colorectal surgeons??


Yes she's back under colorectal surgeon.  She's a little apprehensive, when she was initially told about this procedure, she was told it would be done under general anesthetic, but she's having it done under local.  It takes about an hour and a half.  When they put in the temporary stimulator, they needed her to tell them when she was feeling sensation and where, so maybe this is why.  

Thank you all for your kind wishes.  xx


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## kimmidwife

Niks,
Keep us posted!!!!


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## Niks

Hi All

Stimulator fitted last Friday.  Went well.  She's feeling bruised and sore but okay!  Just waiting for it to start working.  Apparently there's many programmes, so may not work initially, they may need to play with the programmes.  

Will keep you all posted.

Nikkie


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## CarolinAlaska

Wonderful news, Niks!  I hope she finds the right settings quickly!


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## DanceMom

Niks said:


> Hi All
> 
> Stimulator fitted last Friday.  Went well.  She's feeling bruised and sore but okay!  Just waiting for it to start working.  Apparently there's many programmes, so may not work initially, they may need to play with the programmes.
> 
> Will keep you all posted.
> 
> Nikkie


My mother has had to adjust her settings as well. You'll find what works.


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## kimmidwife

That is amazing news!!! Keep us posted!!!


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## Farmwife

Great news!


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## Sascot

Fingers crossed they find the right setting quickly


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## Niks

Hi all, hope all going okay with you all.

So....  Still not found right setting, but she's working through them for a month at a time so could take some time.

Urine retention getting worse, and having to self catheterize, however tubes so small had to have them stretched (again).  This is the exact wording from the letter from the urologist, received today....
_
"Jaime underwent cystoscopy today and I am sorry to let you know that she has a large capacity bladder and the bladder looked moderately to severely floppy.  Her urethral was found to be modestly tight and i performed a dilation.  I plan to see her in 6-8 weeks time and we will take it from there."_

I don't like "I am sorry to let you know" - but surely can't be dreadful or he would have seen her sooner?

So confused, does anyone have any experience of these symptoms and have any idea what it could be.  Could it all be connected?

Many thanks in advance

Niks


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## kimmidwife

Niks,
Has she ever been checked for Ehlers Danos Syndrome?
It might fit the picture.


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## Niks

I don't think she has!  It's just frustrating that there are more and more things that are going wrong for her.  

Thanks for your reply I will check this out xx


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## kimmidwife

Nik,
Sadly we are in the Same boat with my daughter. New things keep popping up constantly.


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## Niks

Latest update.

Jaime has had a really scary time.  Nothing has really improved.  At the beginning of February she woke up with Bels Palsy - face dropped (third time).  She was really struggling with the pain from bowels so got admitted to Swindon.  Fluids, IV anti-sickness and pain relief - was sent home to take her picolax.  She thinks she passed out in the bathroom but the next day she had slurry speech, this got worse throughout the week, to her not knowing where she was, not able to recollect the right words and then only being able to say a word or two together, she also was very wobbly on her feet.

Took her to Oxford, didn't know who should see her, ENT, Gastro, Neurology, Medics.  After being up there all day felt she had bels palsy and concussion.  Because she 'fell in the river and hurt her head' (sentence took a very long time for her to say).  She was sent home.  I wondered if it was low B12 so had her GP send her for tests at Swindon, who also felt was concussion.  B12 came back fine.

Had a letter to review bels palsy in Oxford last Friday.  Neurologist said that you can't get bels palsy more than once, unless infection related.  
Which hers isn't.  They did lots of bloods including some genetics, and she has nerve conductor tests next month.  She is weaker down left side and feeling is not the same on left side.  

Jaime just wants to know what is happening to her, if she can do anything to improve all of this and if she will get better/worse etc.  It is so frustrating,  I hope all of you are doing better xx :heart:


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## kimmidwife

Oh Nicks,
I am so sorry to hear. I was just thinking of you guys. I hope they get this figured out. She needs a complete neuro workup. I hope they do one. Pelase keep us posted.


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## Sascot

Really sorry to hear that. Can’t believe they still haven’t figured out what’s wrong yet!


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## Niks

J not been great, really not having any good days.

She has been getting a lot of rectal bleeding, her London Consultant requested all tests sent to her last November and an urgent colonoscopy, which she still hasn't had.  :ymad:

She went to see her pelvic floor team to get programmes changed on stimulator, and we talked through all of this.  We mentioned that she had seen neurology and some genetic testing.  Her nurse looked on the Oxford system and found a letter dated from the end of May saying that she did 'indeed have a variant of MNGIE'....   :ymad:  I have a copy of this, this letter was referring her for further testing and to a Mitochondrial specialist at a different hospital in Oxford.



This is now ridiculous.  Looking at this it is a genetic degenerative disorder, it is not a good diagnosis.  I am gobsmacked that this is still in limbo and no one has contacted her for further testing to confirm this.

I have emailed the contact on the letter, but pretty furious :ymad::ymad::ymad:

Anyone heard of this????

Hope all okay xx


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## my little penguin

Some have used ivig infusions to treat with some success 
But it’s extrenely  expensive (at least innthe US )
Hugs


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## Niks

Hi

Thought I'd let you all know that finally after 10 years we have a conclusive diagnosis.  Jaime has  Mitochondrial Disease, this is degenerative and affects all muscle tissue.  Because her onset was as a teen, it is uncertain of the prognosis and how this will affect her..

Her main symptoms are still gastro and pain, but she her eye sight is starting to be affected and she has weakness down the left side with stroke like episodes at times causing bels palsy like symptoms and some temporary numbness, with slurred speech and also sometimes not being able to make sense of what she needs to say, not being able to put together sentences or find the right words.  Luckily this hasn't lasted too long.  

She has had absences and one full seizure, which she is finding very scary.  She has a very good Mitochondrial team, who she is able to contact at any point.  Just thought I'd let you all know, in case there is a similar case where it is so difficult to get a diagnosis.  There must be more without diagnosis!

Sending love to all of you who supported us throughout the early days, with ideas and suggestions to help!

xxx


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## Crohn's gal since 1989

Glad to hear that she is finally getting answers!


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## xmdmom

Thank you for posting a diagnosis. I am so sorry that it took such a long time to get an answer. I remember reading your posts and seeing how awful she felt and how hard it was, at times, for her to get doctors to take her symptoms seriously.  It would be good if those prior doctors could know about this diagnosis.

I am glad she finally has an expert team who is accessible and I wish her all the best.


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## Maya142

Your poor girl! I remember reading her story just as I joined the forum. I'm so sorry she had to suffer for so many years without answers - even with such serious symptoms. How is she feeling now, in terms of the pain and her GI symptoms? 
I'm glad she has a great team of doctors - I hope they are able to help her.


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## CarolinAlaska

Niks said:


> Hi
> 
> Thought I'd let you all know that finally after 10 years we have a conclusive diagnosis.  Jaime has  Mitochondrial Disease, this is degenerative and affects all muscle tissue.  Because her onset was as a teen, it is uncertain of the prognosis and how this will affect her..
> 
> Her main symptoms are still gastro and pain, but she her eye sight is starting to be affected and she has weakness down the left side with stroke like episodes at times causing bels palsy like symptoms and some temporary numbness, with slurred speech and also sometimes not being able to make sense of what she needs to say, not being able to put together sentences or find the right words.  Luckily this hasn't lasted too long.
> 
> She has had absences and one full seizure, which she is finding very scary.  She has a very good Mitochondrial team, who she is able to contact at any point.  Just thought I'd let you all know, in case there is a similar case where it is so difficult to get a diagnosis.  There must be more without diagnosis!
> 
> Sending love to all of you who supported us throughout the early days, with ideas and suggestions to help!
> 
> xxx


I'm so sorry to hear this.  It sounds very frightening.  I'm sorry she had to get so bad before she got someone who sould take her seriously. Jaedyn has a diagnosis of Ehler's Danlos now, but her specialist who knows EDS has moved out of state.


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## Tesscorm

I also remember what a long and hard time she had, dealing with the symptoms and getting no answers.  I hope having an answer can help with treatments!  And that her team can now respond to her symptoms and help alleviate and manage them.

While not the answer you would've wished for, I hope having a diagnosis also helps you in supporting her.  Lots of hugs...


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## Tesscorm

Carol, I hope that the new dx for Jaedyn helps explain her struggles too and help both you and her in alleviating the symptoms!  Sending you luck in finding a new specialist who can help Jaedyn feel well!!


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## crohnsinct

Wow Mama's!  You both have my undying admiration.  I remember both journeys as it was yesterday and how much both of your girls suffered.  

I also hope that having a diagnosis and the right physicians in place to help care for them brings some peace and comfort to you all.  

Thanks so much for stopping in and updating us as your stories and outcomes will definitely help others along the way.


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## Niks

Maya142 said:


> Your poor girl! I remember reading her story just as I joined the forum. I'm so sorry she had to suffer for so many years without answers - even with such serious symptoms. How is she feeling now, in terms of the pain and her GI symptoms?
> I'm glad she has a great team of doctors - I hope they are able to help her.


Hi

Her GI symptoms are still the worst of everything, this is where she gets most of her pain, which is the main cause for her getting admitted to hospital, to get pain under control.  Her main frustration is with the Doctors not understanding this, she is really hoping that with the Care Plan that the Mitochondrial team are putting in place that this will be easier in future.  

xx


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## Niks

CarolinAlaska said:


> I'm so sorry to hear this.  It sounds very frightening.  I'm sorry she had to get so bad before she got someone who sould take her seriously. Jaedyn has a diagnosis of Ehler's Danlos now, but her specialist who knows EDS has moved out of state.


Really hope you find someone to help Jaedyn soon!  It is so difficult when medical professionals don't understand how to help xxx


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