crohn's disease

[eleanor_rigby]

Hello. For the past five years I had had horrible stomach cramps that would last a couple of days during periods of stress. I attributed it to IBS and had no other symptoms.

Then in October I got a water infection and horrendus fever, fatigue and pain on my right side. It turns out I had crohn's disease (discovered during a colonoscopy in December). My right side was very inflamed and had lots of ulcers and one had perforated which caused all the pain, fatigue and fever. Also my bowel had got stuck to my bladder hence the water infection. I ended up having surgery 2 days after being told my diagnosis.

7weeks on from my surgery and I have no symptoms except occasional diahrrea when I eat something that doesn't agree with me - I can no longer have dairy products for example.

I never had any symptoms really before the ulcer perforated and now since surgery i no longer have any symptoms again. However being the little googler that i am, the prognosis for crohn's seems appalling. Everyones personal stories that i have read online suggests they are barely able to live their lives and are severely depressed.

I have no idea what to expect and feel highly confused. I have a follow-up appointment 27th jan.

[kinnygirl1]

Hi Eleanor

Sorry to hear about your surgery and illness. My cousin has collitis(sp) and at the age of 21 she had to have the whole of her bowel removed. I can tell you categorically that she is not depressed or unable to cope, infact she lives life to the absolute full, has her dream job and a lovely partner so the outlook is defo not bad for all. I think a lot of it is how you approach life as with many things which I know is a tough concept when you have health anxiety. Have you tried the collitis and crohns disease foundation for some support and info? I know my cousin found it helpful.

[blondinou]

Hello hun,

It must be a big adjustment to make, coming to terms with a diagnosis like that. So I don't blame you for feeling a bit mixed up about all this. Especially as it got diagnosed in such a dramatic way with you being so ill with it!

I know it's tempting to read about things online but it can be so easy to focus on the horror stories. Try reading this booklet by Crohn's and Colitis UK: http://www.crohnsandcolitis.org.uk/downloads/booklets/CrohnsDisease.pdf They also have links to support, these kind of services are designed exactly for your kind of worries.

I have seen a lot of patients with Crohn's, who have had it for years, and most of them seem pretty happy by then. The thing about Crohn's is that the treatment can be really hopeful - a lot of people with Crohn's have to have operations to remove part of their small intestine, but by doing that it can stop the symptoms completely. There are also lots of medication options, basically lots of options out there to improve the condition. And it's really varied, some people do have severe Crohn's but others have it pretty mildly.

Why don't you write down a few questions for the doctor to prepare for your follow-up appointment, that way you can make the most of it when you go. And maybe ask to speak to a IBD (inflammatory bowel disease) nurse specialist about things - they often have much more time than doctors to go through it all with you.

If you can, just give yourself time to come to terms with this. You don't have to feel 100% okay about this straight away, it's only natural not to.

Hope that helps!
Blondinou

[nomorepanic]

As you know I have Crohn's and it doesn't have to be a life sentence.

8/10 people have to have an operation at some point in their lives and you have already had one.

I was unable to have an op when I was really poorly with Crohn's and had over 5 abcesses along the bowel and was in a lot of pain for many many months as like you there were leaking into my abdomen and bladder.

I am now on medicaton and it is under control.

I am on a low fibre diet - have constant loose stools (about 5 times a day) but this is normal for me lol so I kind of get used to it.

I work and live my life the best I can within some constraints and I am not depressed.

Hope that helps somewhat