Crohn's and Colitis Support
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Inflammation in colon but diagnosed Ibs? 😕

Hi,

I've been suffering with 'ibs d' for a while now. Last year I had colonoscopy which showed there was inflammation in my colon. I thought great , I might be given some medication to control this.

When I went to the follow up gastro appointment at hospital I was told 'it's ibs, look in to fodmap diet' and I was sent on my way.

For the last year I have tried every combination of diet I can think of without good results. I've tried all the ibs medications and still I have this constantly active bowel.

I've asked the nurses/ doctors at my local surgery what was the inflammation? I thought ibs did not cause inflammation. They don't give me an answer.

I can't help thinking that maybe colitis medication could help me. Have I been misdiagnosed. Could I have colitis?

Sorry to waffle on, I'm just really bewildered and frustrated.

Any advice would be very welcome.

Xxx

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In IBD there is submucosal or transmural inflammation of the bowel caused by the body's own immune system. This results in ulceration, granulomas and even fistulas. As you mentioned there is not usually any inflammation in IBS, but an allergy/intolerance to a food may cause this. It may be even caused by diarrhoea due to irritation.

During a colonoscopy, biopsies are taken of the bowel lining. In IBD the biopsies will show any patchy changes, granulomas, inflammatory response cells etc. These are absent in IBS, so this may be why they are ruling out IBD because there was no evidence of these findings.

IBD is an autoimmune disorder that means the body rejects and fights against the bowel. IBD meds therefore not only work at reducing the inflammation but lower the immune system to stop the rejection - that's why a lot of the meds used are also used in cancer treatments and for stopping/reducing organ transplant rejection (at lower doses though). These medications also have very serious and toxic side effects, and regular blood tests and close monitoring are carried out when on these ( from weekly at beginning, to monthly then to 3 monthly if all ok). So you can probably understand why they are not used for IBS, and why there is a lot of caution on use of these medications

Have you had a faecal calprotectin test done? and any blood tests done? Also, do you experience passing blood and mucus in your stool (or even on its own), abdominal pain (not colic), urgency , and how often do you have your bowels opened in a day?

Sorry to ask so many questions, I just want to be able to offer you the right help and advice x

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Thanks so much for your detailed reply.

I did have the calprotectin test done last year which showed inflammation. Didn't get told the numbers though. The colonoscopy was then carried out. During the procedure the doctor said there was inflammation in the colon.

Yes I do pass quite a bit of mucus, sometimes on its own. I don't pass any blood. I use the toilet on average 8 to 14 times per day ( which is why I'm desperate to find a cure for this, it's taken over my life 😕).

Xxx

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Passing of mucus is due to the inflammation, with IBD there would be blood involved if having bowels opened that many times in a day. However I dot think IBD should be totally ruled out yet. Have you lost weight, passing undigested foods, or need to get up in the night? Also what if any medication have you tried

I do think you should demand another faecal calprotectin test as last one was a year ago and there has been no improvement/changes. Also ask for the results, anything over 100 is indicative of IBD.

Most IBD people are misdiagnosed with IBS for many yrs, and it can take a severe flare up causing acute weight loss and /or hospitalisation before a true diagnosis is made.

Dont feel you are being a pain by constantly going back to GP, in my experience they will listen to you eventually. I would also ask to be referred to another gastroenterologist. It can be one within the trust you have already have been to, or another trust, that perhaps has a gstro who is better in the field of IBD.

You can also ask for a copy of the colonoscopy report with the biopsy results - you are well within your patient rights

The other option is to go private (if you can afford it) just for the initial consultation and blood tests. When you have these results (which will be sent to you) you can go back to your gp and ask to see an nhs gastroenterologist.

xx

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Thank you for your reply. Sadly I can't afford to go private so I will phone gp this week. I think I am going to ask for my results from last year and see if I can get the calprotectin test done again as I'm pretty sure there's some inflammation at the moment. I have urgency to go to the toilet from the minute I wake up, it goes on all morning. Then gurgles and aches for the rest of the day.

I've lost quite a bit of weight over the last year and haven't seen much improvement with ibs medications or fodmap diet.

You say that food intolerance can cause inflammation. I asked gp about this last year. She just suggested the fodmap diet and said there were no tests on nhs. I think I might buy a test kit online, as maybe I'm intolerant to a 'safe fodmap' food. I could be eating something I think is perfectly safe like rice but my body can't actually deal with it very well.

Thanks for the helpful advice.

Xxx

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Hello! The Fodmap diet is a guide, not every food on it will be tolerated by everyone.

My PCP kept telling me to load up on fibre! My Gasterontrogist told me to stop fibre immediately!

There are lots of FODMAP foods I have reactions to. Simple elimination diet is cheap and effective to find out which are your trigger foods.

I was diagnosed with IBS for over 20 years, all colonoscopy were clear. Barium Enema clear. My 2015 colonoscopy was clear.....but my Feb 2017 colonoscopy showed severe bleeding ulceration and stricture, they had to stop the procedure as I was too blocked to get the scope in. So now I'm getting an MRI so they can see what's happening. They took biopsy and I was officially diagnosed with Crohns March 2017

Now looking back and the fact I have both IBS and Crohns there is definitely a difference. When I had bad IBS I thought my life could not get any shittier ( sorry but not one to mince words) but it can, the level of sickness and overall health is much different for me now with Crohns

I have a duel diagnosis or Comorbidity, meaning I have more than one autoimmune disease and predates my Crohns by almost 4 years. The medications used to treat my other condition and my poor health and low immune likely contributed to the development of Crohn's although I can't prove that

I know IBS is a crappy diagnosis, cause they basically tell you nothing is wrong with you, yet you have all these symptoms. I wish they would explain to people, IBS is more about food intolerance than disease, and better help people manage it. But doctors just leave people to figure it out on their own. Even with Crohns I get no help with diet or anything like that, I was left to figure it out for myself through illumination diet, what I can eat and what I need to stay away from.

I hope you get some answers from your doctors.

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Hang in there and keep pushing your doctors. I have been having symptoms for over 5 years now, my first colonoscopy 18 months ago, like yours, only showed inflammation and the biopsies came back negative for Chron's. I had another colonoscopy done last week, and I had 6 ulcers in there! So now I am waiting the results of the biopsies. The GI doc is pretty sure with the my symptoms and with the progression that I have Chron's but as she said, many people suffer for years, have several tests and Chron's doesn't appear in the biopsies. It can sometimes be 5-10 years before you get a positive biopsy for Chron's!

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