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CT scan - some thickening of proximal duodenum?

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

Catherine

Moderator
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).
 
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:
 

Catherine

Moderator
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
 

DustyKat

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

AZMOM

Moderator
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.
 
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.
 
Location
NY
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.
 
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!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
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!
 

CarolinAlaska

Holding It Together
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.
 

Crohn's Mom

Moderator
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 !
 

Catherine

Moderator
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.
 
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:
 

Catherine

Moderator
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?
 
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.
 
Location
,
Good luck with the appointment.

My daughter was vomiting 1 day and i got stressed so can't even imagine how you feel....:hug:
 
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
 
thanks Sascot, I hope you're right! I am not expecting anything that quick but here's hoping x
 

DustyKat

Super Moderator
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
 
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:
 
Location
NY
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.
 
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!
 

CarolinAlaska

Holding It Together
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...
 
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
 

CarolinAlaska

Holding It Together
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

Moderator
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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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:
 
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.
 

CarolinAlaska

Holding It Together
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.
 
Yes Kimberly

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

Thanks everyone, heading back soon! X
 
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!!
 
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
 
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!!
 
So glad she is finally getting some help and sounds like a smart doctor to start from scratch. Praying and thinking of you both
 
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
 
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!!
 
Location
NY
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!!
 
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
 

CarolinAlaska

Holding It Together
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.
 
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!!
 
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
 
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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