Does this sound like Crohns?

Hi,

I hope I'm not imposing, I haven't been diagnosed with Crohns but have had a horrible few years and doctors have yet to give me any answers.

I'm a 25 year-old now, this all started when I was 21. I started getting pains intermittently in my lower right abdomen. They were quite sharp and sometimes cramps. Then, I started to notice that in class, my stomach would make these really loud gurgling noises, almost like I was breaking wind but I wasn't, it was so embarrassing and one of my professors even asked if there was a cat in the room!

Then when I turned 23 things really took a turn for the worst. I constantly felt sick and when I woke up in the morning I had an extreme urgency to use the bathroom. I'd have horrible cramps in my stomach and I would start sweating. One morning I thought I was breaking wind but it was a BM and I had an accident. Once I start, I usually have 6 BMs in two hours in the morning and then about 4-5 more dotted throughout the day. Soon after, the pains in my stomach became excruciating. I was admitted to hospital but none of the doctors would listen. I had a scan and it showed a fatty liver but I'm not overweight, the doctor just dismissed it and said it didn't mean anything. Soon after, I had surgery to see what was going on. After surgery the doctor just told me I had adhesions on my small bowel and that is what the pain was from. I asked where did the adhesions come from and he said they could have come from anywhere. I was really disheartened as although the extreme pain was gone. I still had diarrhoea and felt nauseous and exhausted every day but none of my doctors will listen and keep telling me it's anxiety. I was on holiday in the Caribbean last year, I've never been so relaxed but I still felt the same.

Even now I feel awful. I now have an awful pain in my upper abdomen, about 4-5 inches above my belly button. It's a really weird tense feeling that I can't really describe but it's painful and makes me feel so so ill. I'm still exhausted. When I say exhausted I mean it's really hard to get out of bed and some days I just want to sleep.

My doctor won't listen to me and the surgeon has ended dealing with me because it was "just adhesions" and I need to stop "being paranoid and looking for attention." I wouldn't be paranoid if I had felt better after the surgery but I never improved. I certainly am not looking for attention, I just really want to feel better and to do that I need answers.

I know it's most likely not Crohns but I was reading up on what could be causing my symptoms and that features heavily. I thought some of you guys might be able to relate and let me know if you think it could be Crohn's or not. I mean you guys are the experts. I wondered if it was Crohns if they just would have been able to see it during the lap or with blood tests. All my blood tests showed was that I was deficient in Iron and Magnesium.

Thanks in Advance,

Amy

Are you female? Endometriosis can cause debilitating adhesions. I don't think they just happen out of the blue. I had endometriosis up until a hysterectomy (I don't think it's active anymore) and the symptoms can overlap.

Hi,

Thanks so much for the responses.

The reason I haven't had a colonoscopy is because my GP will not allow me to see a GI, he said there wouldn't be any point because the surgeon said it was just adhesions. It was just a general surgeon that I was seeing, not a gi. In my area, you must be referred to a gi by a GP. I'm not on any supplements for iron. My doctor just told me to eat plenty of green veg and red meat so that's what I do.

I initially thought endometriosis too, especially because my dad's mother had it. I was actually sure that that's what it was when I came out of surgery, the surgeon said it was adhesions and I was like oh so it's endometriosis? I was so relieved to know what it was but he just said no, not endometriosis adhesions, scar tissue adhesions but that just doesn't make sense because I've never had anything that would cause scar tissue before that lap. He did however do labs on the specimen of adhesions (the only test he carried out on them) and they weren't adhesions related to endometriosis.

I know I'll probably need to change doctors at this stage. I feel almost like it's all in my head because nobody will listen. I feel so belittled when I talk to my doctor. I've almost accepted that this is the way I'll feel forever and I'll just have to deal with it.

Amy

Yeah first suggestion is to find another doctor. I'm surprised that they haven't at this point suggested a scope. Something's not right if the GP isn't willing to refer you to a GI for that since your problems center around your gut. There are other tests a GI can order to fine tune the diagnosis that a GP isn't qualified to even consider. Hope you are able to find someone willing to listen since that should be their primary occupation.

Ah! the NHS. Hopefully NHS experts will chime in here; I'm thinking specifically of NCOT. If you don't see any posts from them today, please put up another thread asking for tips on working with NHS. I think you can do better.

<3 <3 thanks NCOT

@kazbern - Glad to have helped! :p

@amy - Is there a local forum/FB page/etc. where you can ask for GP recommendations in your area? Getting a decent doctor is pot luck otherwise, and I'd rather you didn't stumble across a second crap GP. That said, I think most GPs would be better than your current one. He really does sound useless. Trying to raise iron through diet alone is a losing game, especially if the underlying cause of iron deficiency hasn't been corrected. I'd take an iron supplement.

Anaemia is also common in Crohn's. That, in combination with your GI symptoms, makes me think you might have it. Adhesions might cause abdominal pain, but I don't see how they can cause fatigue, diarrhoea, low iron, etc. I thought your surgeon gave you a woeful brush-off by the way: saying the adhesions can come from "anywhere" is so vague as to be basically the same as giving no answer at all.

It doesn't sound ridiculous, wanting to be diagnosed. Think everyone who's been suffering for years without a diagnosis feels much the same way. I dunno if this will cheer you up or depress you even more, but there are some folks on this forum who took years to get a diagnosis; a couple, decades. The faecal calprotectin test is designed to help with diagnosis, ie distinguish between IBS and IBD, but GPs can't even order the FC test in this country (something I find ridiculous). When you get a new GP, ask them about the FC test. Tell them that you would like to have one. It's a very good test for intestinal inflammation in general; it can't specify the cause of the inflammation, but it can detect it's there.

Better go to bed now. Have to be up early tomorrow... :-/