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Avatar universal

Could this be microscopic colitis?

I have had a diagnosis of IBS for many years now. I am 64. I get pain in my right-hand side and sometimes it goes on for days. The location appears to be at the top/corner of the ascending colon. I was getting diarrhoea when first diagnosed many years ago and had horrible abdominal pains all across my abdomen that meant when I went to the loo I was almost fainting with the pain. After I’d finished I would be breathless, exhausted, sweating profusely and faint. I felt like I almost collapsed on the floor many times. A few years ago, something changed. I started getting more constipation and bloating on the right side and ongoing pain. I had investigations - ultrasound, CT with contrast, and colonoscopy and gastroscopy. There was mild duodenal inflammation and diverticulosis of the descending colon. I understand biopsies were taken. So, I still had IBS and now diverticulitis (the latter does not cause me pain and is nothing in comparison to the pain I get on my right side). Four years later and, this Christmas, I had continuous right-sided pain in the usual place. It has been extremely wearing and worse and I have got so behind with housework as a result. I just wanted to sleep to get away from the pain. Mild pain relievers did not work and the only thing that reduced the pain was co-dydramol and that barely worked on occasions. I am aware that it causes constipation and is addictive so I am sparing with it. As the pain was still bad weeks later and my life being wasted, I went back to GP who ran tests for IBS - ultrasound, blood tests, fecal calprotectin. All clear. Having spoken to another medical professional at the surgery, I was asked to do a FIT test as well, just ‘for completeness’. This showed occult blood in stool and I was referred for urgent colonoscopy. Apparently the colonoscopy was ‘challenging due to significant looping’. No biopsies were taken and diagnosis was diverticulosis - again located on opposite of body to where I get the pain. Cancer inside colon was ruled out and I am now on a (presumably long) waiting list to hear from consultant. I know IBS is a diagnosis of exclusion and that symptoms vary. I feel something must be causing this disabling pain and that they are missing something. I find it hard to believe I could have obvious diverticulosis and no pain there yet extreme pain on the right side and no explanation. Surely something must be affecting me there? Is it possible this could be microscopic colitis that is being missed? No biopsies were taken during this recent colonoscopy and from what I’ve read although microscopic colitis can present with constipation, indications for tests are usually chronic diarrhoea - in which case no-one is looking. I feel so demoralised and frustrated. I am taking stool softeners and that helps but I still get pain. My life is much reduced by not knowing if I’m going to be up to doing things any day. I was a vegetarian for many years and had a diet full of good things and fresh veg. It seems so unfair I should have this chronic disability. What should I be asking the consultant when I get to see them? What tests would help? I’m thinking I might have to go private to get some help with this as I’ve been suffering with the bloating and pain for several years now. I have been investigated for uterine/ovarian cancer recently and there is nothing on uterine biopsies or ultrasound. I can’t help but feel there is something being missed. My mother had Crohn’s all her life, had two major surgeries and suffered from short bowel syndrome. I know they didn’t find Crohn’s on my colonoscopy 4 years ago or now but obviously I’m wondering if I’ve inherited some vulnerability to a kind of hidden inflammation
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Avatar universal
Thank you for your very helpful reply. I am sorry to hear what you have been - and are - going through.

Strangely enough, I had actually started to wonder about tortuous colon because it would explain symptoms over the years. I have had two colonoscopies over the years and two gastroscopies as well as a stomach-emptying follow-through test. No-one has ever diagnosed me with tortuous colon. How is this diagnosed?
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Avatar universal
In 2015 I had a cecal vulvulus  (a twisted colon) so had to have emergency surgery to remove my cecum and ascending colon plus my ileocecal valve which is connected to the small intestine.
Now I usually have constipation because apparently fecal matter gets stuck in the right part of my colon where the connection was made.  Last year I ended up with diarrhea for 89 days including in the middle of the night.  It ended up I had E-coli, and a breath test showed I had SIBO (small intestinal bacterial overgrowth) since I had nothing to stop the fecal matter in my colon to leak backwards into the small intestine.  I took the antibiotics for the E-coli and SIBO and it helped, but then I also ended up with a colonoscopy and found out I had lymphocytic colitis-a microscopic colitis.  After 8 weeks on Budesinide my diarrhea stopped and I've been constipated since.  It's either one or another.  My original problem with the vulvulus was because I had a long redundant tortuous colon that wasn't attached to the abdominal wall on either side.  This is a birth defect.  So one thing led to another.  I'm wondering if your "significant looping" is caused by a tortuous colon too.  And that could cause constipation I would think.  Keep after your gastro doctor because there is no reason for you to go through this problem.  Have you tried MiraLax.  That's what my doctor recommended for me.  Currently I'm just on a heaping spoon full of Citrucel once a day and I can usually go at least every other day.  By the way my gastro told me my SIBO and lymphocytic colitis will come back.
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