CT scan - some thickening of proximal duodenum?

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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/
 
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
 
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!
 
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
 
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.
 
Hope the GP manages to help! It's good if you can get at least one medical professional who listens to you!
 
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:
 
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:
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I have a huge feeling he will give a pillcam and find a stricture....:(
 
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!
 
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!
 
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!!
 
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?
 
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!
 
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:
 
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??
 
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??
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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:
 
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
 
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
 
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...
 
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!!!
 
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.
 
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
 
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
 
I really hope this results in solid answers and a plan Niks!! I hate to say it but I'm glad it happened!
 
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!!
 
Am glad too now Dex, although at the time it was just horrible , I was nearly crying too. She was so upset :( x
 
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:
 
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!
 
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
 
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
 
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:
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I just don't understand it Niks! Why can't they put her to sleep for the scopes? I am shocked.
 
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
 
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!
 
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!
 
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
 
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!
 
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:
 
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.
 
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!
 
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.:(
 
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!
 
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:
 
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.
 
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
 
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
 
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?
 
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:
 
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?
 
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?
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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
 
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.
 
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. :)
 
Thanks Dusty. Hopefully the next few days will get easier.

We are away for a few days so really hoping so!

x
 
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. :(
 
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.
 
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
 
Niks said:
Thank you. We are certainly trying! Just wish I could swap places xx
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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.:(
 
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.:(
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:ghug::ghug::ghug:..I'm sorry you and your daughter are going through so much.
 
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?
 
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
 
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.
 
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.
 
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!
 
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!
 
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
 
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
 
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!
Click to expand...

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:
 
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.
 
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
 
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?
 
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.
 
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?
 
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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