Has anyone with IBS experienced colitis but it wasn't chronic IBD?
Posted , 3 users are following.
Hi. I was told years ago that I have IBS. It started with pains that I am so sure kicked in due to nerves. I've always had that hair trigger mind-gut connection where if i felt any anxiety I pooped right away. Burning pain in pelvis at 39, but nothing else. Pain in left quadrant, colonoscopy clean, doc said it was nerves. Supposed GERD attack at 42, huge pain in my stomach, turned out I had a tiny hiatal hernia. If figured the pain was due to that. I figured the nerves caused it.
March 2015 clean colonoscopy. Not many pains in before that. November 2015, had a cuban coffee, felt spasms down my gut and then 5-6 weeks of diarrhea, intermittent with it trying to form, and a feeling like my rectum was swollen. THen it normalized. No pain.
2017, I had an attack the morning after Thanksgiving. Ended up in the ER with what they called colitis. Midway in Transverse colon down to the descending colon. IT said "Consider infection/inflammation over ischemia" and the doc said it was "focal point colitis." He said I'll feel better but to follow up with my GI doc.
GI doc is thinking it's infectious colitis. I had symmetrical arthralgia ( pain but no swelling) in shoulders and in my spine weeks before this, and even felt soreness in the corners of my mouth, but he's not convinced it's Crohn's at this point, though when I brought it up, he acknowledged that there's a small possibility. He gave me the "you have to manage your stress" talk and "think of the glass half full, you don't have a Crohn's diagnosis" thing.
If this IS Crohn's, it's been very slow to advance. I'm 48 and my first ever gut issues started around 39 I would say. I had chills and dizziness in the ER but no fever. Right now except for the pains in my sides and the difficulty in having a bowel movement any time except mornings ( I feel no pains in the mornings), I feel perfectly normal. In fact by and large I feel like I could play in a baseball game! It's just my gut.
Still, I'm going for a 2nd opinion Jan 2nd and I'm concerned. I don't want to miss anything important but I don't want to be over diagnosed or mis diagnosed either. They say "Keep looking for trouble and you'll find it" and of course, I saw a Crohn's list post where one patient said "I hate 'IBS.' I have so many patients who come in saying they have IBS and it's IBD!?"
That scared the crap out of me, pun intended. 
So anyway, I looked online and saw a paper that said "IBS with colitis Neutrophils" and of course I saw something else along the lines of saying IBS can have immune mediated effects.
So I have no idea what to think. It's about Christmas and I hate to ruin my holiday with worry. Worry won't help and will only hurt.
Has anyone here with IBS had reason to think they really had IBD and they were thankfully wrong? Some people can have BOTH! And there are overlapping symptoms at times. Hoping for some responses that can give me positive things to think about.
Thank you!
0 likes, 5 replies
looloo43 Janeway69
Posted
Hi. Yes! I have ibs(d), bile acid malabsorption & ibd in form of colitis. i am currently going a bad 6wks+ of bad ibs?? i say ??? as my bloods & faecal calprotectin test have come back normal. however despite my gp increasing my amitryptilline (a anti cholinergic med used to slow down bowels in ibs (d) patients) i was still getting really bad static constant abdo pain & diarrea upto 12 times daily. i felt the pain was more like colitis type pain rather than ibs pain, as it was constant, didnt move around, & wasnt cramping, but more internal soreness/aching & lower back, & i felt more tired. i had some prednisolone steroid tablets left from my last colitis flare, so in order to prevent more time off work & a crappy christmas , i started taking 25mg every morning 7days ago off my own back without gp or consultant approval. by day 3 my pain was significantly reduced & bowel movements down to 5/6 times daily. I'm on day 7 now & again pain now only about 1 to 2/10 & bowel movements 3-5times daily with some diarrea - not all. i have had these conditions since 2012 & know my body better than any doc - & it shows there must be some inflammatory element (ibd) going on as well as ibs (known as overlapping ib/ibd as you mention) or the steroid tablets would not have had any effect. its now day 7 & i am reducing the steroids to 20mg daily for 3 days, then down to 15mg & so on til a stop. i am just hoping that was enough to calm things down, & if does not come back as steroids tapered off, i intend to write to my gp to tell him what i have done to prove for the future that trying a moderate dose of steroids when i report problems IS a justified action to take instead of doing repeat stool tests, waiting for colonoscopies etc & remaining unwell in the meantime. i hope this helps, & by the way i do not advocate taking meds without docs approval in general, but i know my symptoms & types of pain inside out & what has worked in the past. x
Janeway69 looloo43
Posted
Okay, so looloo43 your answer was not what I was looking/hoping for, as the question was, was there anyone here who had IBS, had reason to think they actually had IBD, but they were thankfully wrong.
But I read your story with interest and it's food for thought. The doc I am seeing is a gastroenterologist, not a GP. He's a very wait and watch sort and I'm starting to think, for several reasons, that I need to see someone who takes more action.
I wish you wellness and thank you for chiming in. Peace on earth.
looloo43 Janeway69
Posted
Hi again. Sorry if my reply wasn't an accurate answer to your question. I suppose what i was trying to get across, is that is entirely possible (& more common than you think form from posts on here last few years), to have ibd & be misdiagnosed with ibs (particularly with no bleeding & "normal" bloods & stool tests) or have a combination of both as my gastro consultant terms "overlapping ibs/ibd". it is usually on gold standard concluded on a colonoscopy with biopsies (meaning ibs diagnosed, suspect ibd, but colonscopy clear/biopsies normal). on this site i have seen more people diagnosed with ibs initially, only to find they actually have ibd once a colonoscopy is done - which is totally different treatment with meds.
I hope your appointment in january goes well, & do let us all know on here how you get on. x
borderriever Janeway69
Posted
Try not thinking about all of this over the Christmas Period, give yourself a rest over the Christmas period. When you have time make a list of your concerns, this will save time
BOB
Janeway69 borderriever
Posted
Bob,
I get what you're saying Too bad I just found and read a scientific study that said "Focal active colitis" is a feature of Crohn's, and therefore it was thought that when it's in IBS patients, it may be a precursor to Crohn's.
It even said only 6% of IBS patients get FAC, but of those that do, 27% get Crohn's. How lucky for me!
I'm not even entirely convinced I've had IBS this whole time.
Trying to chin up and be positive, but it's very worrying. I have an appointment with a new gastroenterologist Jan 2nd for a second opinion. I hear he's very up on "the latest." Hope he can do something. Thanks.