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Crohns in lower bowel

Posted , 6 users are following.

chris99677
chris99677

Hi. 

I’m new so please bare with me. For 2 years I have had the most uncomfortable pain in my abdominal. It’s alwaysbtge right hand side near my belly button and sometimes goes to the lower right. It’s aweful. It hurts all the time and when I press. I have had all the tests you can imagine. Endoscopy. MRI. CT. and colonoscopy. All showing nothing. 

I’ve been refereed to general surgery who seems to question a grumbling/chronic appendix. 

My new GP has been fantastic and understanding. So she did a faecal calprotectin test. The first one was 263 and the second 276. Which she believes could indicate crohns. But the general surgeon says it has to be over 600 combined. Nothing shows up on the colonoscopy. But she says it could well be in the small intestines. Has anybody else had a similar situation. I’m at my end now. What’s ever it is it’s ruin my life. I lay in bed all the time as this is one of the ways to reduce pain or I starve myself as this relives the pain. My bowel movement are all or nothing. Thanks. 

0 likes, 17 replies

17 Replies

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  • rose45257
    rose45257 chris99677

    Posted

    Hi Chris,

    Sorry to hear you are suffering with these symptoms. There is a lot of support here and there will probably be others who can offer more info than me as I am also new (ish) but have had abdominal problems for many years. Something that came to my mind reading yr post is have you had many blood tests or if so repeated bloods? Your gp sounds great which is a godsend truely when you have anything ongoing so I would try to stick with her whenever possible. For me I had a mixture of symptoms and results which my consultant said was enough to diagnose inflammatory bowel disease. I had a history of diarrhoea which gets pretty uncontrollable at times, severe abdominal pain, bloating fatigue etc but when my bloods showed I was low in b12 folates and had iron deficiency anaemia despite no periods they took it more seriously I had had previous colonoscopies one removed a polyp one queried colitis and another showed no inflammation but that was after a year on steroids.

    My small bowel mri showed an enlarged terminal ileum which together with a slightly elevated calprotectin result of 88 (I think) and the history of recurring anaemia, pain and the fact that I improved on steroids and a powder called questran my diagnosis is crohn's in the terminal ileum and possibly collagenous colitis which is microscopic so needs biopsies to confirm. I also have functional gut disorder /ibs and a history of severe endometriosis which was particularly bad on my bowel and rectum and I needed a 4hr surgery to remove the endo. I would ask if there are any biopsies that show or indicate any possible diagnosis as unfortunately I had biopsies in 2008 that were thought to be the microscopic colitis but I was never told this information.

    I now take regular medication and have steroids incase of a bad flareup although only take them when i'm at my worst as I find they elevate my blood pressure for which I take two tablets for each day so have to be careful.

    Two of the best things I've done are to take a good probiotic called quest mega 8 biotix acidophilus with other strains they are slow release capsule and help me a lot with the ibs and generally keeping my gut more healthy. The other thing is to get to know what your trigger foods are in your diet. My cons told me wheat and dairy are two of the biggest food groups which can aggravate these disorders. I have looked at what I eat but like you I often don't eat to manage the pain or skip meals especially when I was working I couldn't eat anything much the night before and certainly nothing on the morning of going to work I could just about leave the bathroom to get out of the house somedays. I am getting less flareups at the moment and have a specialist nurse that I can contact if I need to inbetween seeing the consultant. I have b12 injections and iron infusions as one of my symptoms was that I became unable to tolerate any oral iron which is also a known symptom in some people with ibd. I also get flareups of severe pain and diarrhoea if I take certain vitamins and oral antibiotics are a no no now for me.

    That said there is a lot more support and awareness now and whatever the diagnosis there is a lot of help here. Hope ive helped a bit.

    Take care

    R

  • grace76608
    grace76608 chris99677

    Posted

    Hi, sounds like chrons to me, mycalprotectin test was reading at 333, however a colonoscopy and MRI confirmed it was chrons but my GI said it was mild. I strongly believe if you get tested whilst things are calm, they will not show up, I believe it needs to be done during a flare up which can be hard to do. It's very frustrating, keep pushing for answers don't give up. Good luck 🤞

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