If anyone can help I'd be very grateful.

Crohn's Disease Forum

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Sep 14, 2011
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Hi,

this is the first time that I've ever joined an on-line forum for anything & my reason for doing so is because I've been diagnosed with some form of inflammatory bowel disease by my GP, as a result of a positive reaction to steroids, but taking these steroids have not managed to alleviate my symptoms entirely.

I'd hate to think that I was boring anyone with what is essentially the story my own sickness, but I'm desperate for any tips that would allow me to lead a normal functioning life, as continually being off work is causing me a lot of stress as this leads to financial difficulties as well, which seem only to exacerbate the problem.

If it's OK, I'd like to provide some background to my situation (and if this post has the only consequence of helping an insomniac reading this to fall asleep, then it will have achieved something for someone)? I was initially diagnosed with dyspepsia, which was then changed, after a positive test, for H. Pylori & I was experiencing symptoms such as nausea, vomiting, bloating, abdominal pains & general intestinal discomfort. These symptoms persisted after I had taken triple therapy to cure the H. Pylori & I was re-tested to see if the H. Pylori was still present; the results were negative, but I was still unwell.

I was referred by my GP to a Consultant Gastroenterologist & after tests such as an endoscopoy, a sigmoidoscopy, a colonoscopy and a capsule scan, the Consultant concluded that I had irritable bowel syndrome & I was placed on numerous pills in order to counteract the symptoms I was experiencing.

However, I have continued to be persistently unwell & have remained in contact with my GP, who is referring me to another Consultant Gastroenterologist for further investigation, as the positive effects of the steroids seem to suggest that I have some form of Inflammatory Bowel Disease & are helping, but haven't helped so much that I'm able to make a full week at work (which I haven't managed for a while.) What I'm looking to find out is if there's anyone on this forum who has experienced a similar situation to mine & if possible, any advice that they have in helping me lead a relatively normal live, if they have managed to do so. I would be very grateful for any advice & I promise that any response I give will require a lot less reading than this initial post!
 
Hi Lew

Welcome to the forum! Don't worry---you didn't bore me at all with your story! Your story resonates with many other stories that are told on this forum.

Not being properly diagnosed is frustrating and happens all too often. Not only is it frustrating, but it can be dangerous to be misdiagnosed and not get the proper treatment. While some symptoms of IBS and IBD overlap, there are significant differences between the two. Even within IBD, there are differences between Colitis and Crohn's, and these differences are important in terms of treatment and long-term effects.

If you are responding positively to steroid use (I imagine you're using Prednisone?), then there's some degree of inflammation that's present in your body. Do you have fevers, weight loss, lack of appetite, joint pain, etc.? Some of these different manifestations can be attributed to IBD rather than IBS. If you've seen some positive results from steroid, but it hasn't settled all your symptoms, then you might also want to get the dosage you're on checked out. You might want to bump it up a bit higher. What other meds are you?

I think it's really great that you're getting another opinion from a GI.

On the forum, you might want to post your story and questions in the "Undiagnosed Club", which is a subforum under "Support". You might want to also figure out if there are certain foods that are causing you greater discomfort---both the Diet and Treatment sections of this forum might be good to take a look at in order to prepare yourself for your next appointment.

I wish you well---I hope things get sorted out quickly for you with your next consult.

Cheers,

Kismet
 
Kismet said it all Lew!
But a big welcome, we're glad you found us!
lotsa luv
Joan xxx
 
:welcome: , Lew! Don't worry about writing too much - the issues we all deal with are so complicated that it takes a lot to explain them! And the people are this forum really care about each other, so don't feel like you're "bothering" anyone!

When you had the colonoscopy, did they do biopsies? My doc told me that the biopsy results are what lead to an IBD dx. So if you didn't have biopsies done, I'd ask to get another colonoscopy done with biopsies (sorry that would mean another round of prep!!!!)

Do you know if the new GI you're going to is an IBD specialist?

Anyway, so glad you found this forum!
 
Thanks so very much.

I'd like to say thank you for all your advice & support, I will definitely take a trip to the undiagnosed club, sounds like a very good idea. Will be speaking to my GP next week to discuss the prednisone (sic.), so upping from the 30 mg might be the way forward.

I've had biopsies with the endoscopies I've had & they didn't come back with anything, but yeah, prep isn't the tastiest!

Thanks so much for your replies guys, I really appreciate it & I hope you're all doing well.

Lewis
 

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