Help! The whole of my bowel is inflamed

[Daytripper]

Hi all!

I've just come back from an appointment with my specialist who has explained my crohns to me in a little bit more detail and apparently the whole of my bowel is totally inflamed and it leads up a little to my intestine. I've had mine for ten years now, and I try to do everything I can to help myself.

I know everybody is different with where their crohns is, but I just wondered if anybody can offer me any information, help or advice to do with when your Crohn's affects all of your bowel? I know Crohn's disease is an inflammatory bowel disease, but is it common for all of your bowels to be inflamed? And what does the specialist mean that all of my bowel is inflamed and a smaller portion of my intestines, because I thought that my intestines were part of my bowel, if that makes sense? I love to have as much information as I can and I just wondered if anybody out there has their crohns in the whole of their bowel, is this common, what side effects do you have more often, what do you find helps you? These might be silly questions, but just any information is much welcomed, any information at all.

Thanks everyone xxxx

 

[ronroush7]

Anyone?

 

[KayleighMeek]

It sounds to me like your Dr mean that the disease is through out your large intestine (colon) and some in the last part of your small intestine, I would give the GI a call to clear up what they meant it can be a lot to take during the appointments. I have crohns through out my colon and have the diagnosis of crohns colitis but I do also have inflammation in my small bowel as seen from a recent colonoscopy. I find medications really help keep things under control and avoiding certain foods that I find difficult to digest (high fibre). Some of the most common symptoms I have during a flare are stomach pain that is lower down in my abdo, loss of appetite, sudden weight loss, blood in stools, diarrhoea and joint pain and swelling.
If you have any other questions I can try and answer them but I hope this helps

 

[littlemissh]

I agree. The colon/ large intestine is often referred to as the large bowel and the upper gut the small intestine. I think your doctor was saying all of your large bowel/colon is inflamed and the last part of the small intestine. The last part of the small intestine is called the terminal ileum and commonly affected in crohns.
It sounds like your current medication isn't sufficient to control your disease and needs stepping up.

 

[scottsma]

I agree.Has your GI suggested a change in Meds.or are you still waiting for an appointment to discuss things ? We Brits. all know how long that takes.
I hope you get sorted soon,Best wishes.

 

[Daytripper]

Thanks for the advice and information everyone. My joints have really started to hurt lately, they've never been an issue before but the whole of my right side starts hurting sometimes and then just goes away- it's usually when I'm out walking or shopping or something. I don't know if anybody else gets that? I'm on humira fortnightly at the moment, sometimes they up me to weekly when my inflammation goes up, however at the moment my inflammation is kind of just sitting there not getting higher or lower. Everytime I go my specialist tells me my results are a mixed bag! Like my iron levels have increased but my protein has decreased and so on....I had mentioned about steroids to give me a boost, but they've told me to wait and see of the inflammation changes. I feel a little like everytime I go to the hospital they sort of say, yep you still have crohns, see you in three months! Thanks for your advice everybody, it's just nice to have people to talk to who understand and can give me a bit of advice.

 

[Daytripper]

Oh, and is everyone's large bowel usually inflamed with crohns? Is that common? I'd heard that the ileum was the most common part to be affected. I remember the specialist telling me that an operation would be no good because my crohns is everywhere so they can't just cut the inflamed section out.

 

[Clash]

It's pretty common for the colon to be affected. If it is only in the colon it is called crohns colitis. If it is both the colon and the TI of small bowel it is called ileocolonic CD.

Joint pain is an EIM of CD and sometimes requires a rheumatologist care as well. Also some people experience a side effect of joint pain with meds like humira.

Hope you feel better soon.

 

[Daytripper]

Thanks for all of that Clash, sometimes I'm not sure if my side effect is from crohns or humira!