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Is it really IBS? Through the roof symptoms

Hello all,

I'm a 22 yo male. Lot of GI issues. I have completely EXTREMELY FREQUENT random stools. By completely random I mean there is no logic at all. Sometimes it's hard, sometimes it's soft/loose, sometimes it's watery diarrhea, sometimes it's load of mucus, rarely streaks of blood in mucus.

But here's the thing, I go to the toilets a tremendous amount of times a day, at least fifteen times (no exaggeration), and that's fifteen times while taking anti-diarrheals medications. Even when it's hard, I can have 15 stools a day.

By random I mean, I have diarrhea all day, then at night constipation, then diarrhea again, then constipation again. I can switch between both multiple times a day.

I have pain varying, from mild to as bad as a broken bone (which I had so I can compare), I have urges, even hard or normal stools are emergency.

My symptoms have been constant from 9 months now, not a day has gone without symptoms, some days have been slightly better, but I haven't had a day with less than 8-10 stools I can confirm.

Other symptoms are : fatigue, brain fog, recurrent fever, up to 38°5 celsius, incomplete emptying, evacuation does not calm down pain right now, right now sometimes vomitting.

On blood tests : anemia, (hematocrit range : 43-37), low magnesium, low bicarbonate blood, slight hyperkalemia, 0.4-1.1 mg/dL CRP, low cholesterol (LDL, HDL).
I had colonoscopy, nothing found, but colonoscopy was done months ago, when I was almost in symptomatic remission. So I was diagnosed with IBS, but I can't relate with other IBS, I feel like I'm worse than most IBS cases I see, and so far I don't see IBS people having recurrent fever, infections (cdiff), or blood, and moreover no IBS treatment helps at all. That's why I come in IBD boards? What if colonoscopy was wrong? I'm starting to wonder. IBS doesn't seem to make sense. It seems my IBS is off the chart with so called "red flags". (I sometimes awake at night, I have fever, streaks of blood, somewhat weird blood tests, nothing calms down super-diarrhea)

Other health conditions: asthma, bronchiectasis, had recurrent Cdiff.


Something that impressed even GI: the day of my colonoscopy, not having eaten ANYTHING before colonoscopy (I really ate nothing, not at all), having taken the cleanse, I shat 4 times after colonoscopy, earliest stool being one hour after colonoscopy. It was a weird stool.

I'm totally hopeless right now. I've tried every treatment: antispasmodics, antidiarrheals (bowel doesn't care how much I take, it will still shit loads), antibiotics, lowfodmaps, vegetable only, exclusion diet, bile acid sequestrant, probiotics, enzymes, no gluten, no dairy, only poultry, only soup, fasting, psychotherapy, anti depression meds, ...)

Doctors are either helpless or say it's in my head. I'm totally disabled. I'm losing all hope. I hate people humiliating me. I suffer a lot and people say it's my fault or there's nothing to do. Why not to try me on opiates? On corticosteroids? Maybe an operation would help? Feces transplant? They can't let me like this.


If anyone can help or relate.

Thank you for all your answers.

As many of you are probably IBD-sufferers, I send you my wishes of good health. May your remissions be long.

AshRyzE

P.S: my "problem" started gradually, at first I have non-continuous symptoms and it improved after thing like "low fodmap", "probiotics", but right now it's completely out of control and out of proportion.
 
Hi. I would ask your doctor to repeat the colonoscopy and maybe do a mri. I could be wrong but I think it is some form of ibd. I hope you get some relief soon. Let us know how you are. Sending support.
 
Have they ever done a stool test? A Fecal Calprotectin is an easy thing to order and could give interesting results. I also second the MRE and maybe a pill cam to look in those places where the scope can't as it doesn't sound like "just IBS" to me.

What country are you in? Is a second opinion an option?
 

Lady Organic

Moderator
Staff member
Hello and welcome. I am sorry or your suffering. You would need to repeat the colonoscopy at a moment like now when you are symptomatic. Also as suggested, in the meantime, you could do a fecal calprotectine stool test. This can help orient a diagnosis.
 
This forum is great for Crohn's and UC, but your problem might fall under the microscopic colitis (MC) umbrella. I've been telling some people here that they should check out the Persky Farms Microscopic colitis forums (Google it). The tend to consider things like IBS-D, mastocytic enterocolitis (etc) to all be a part of MC. They have a very specific approach to treatment that works well for some people. It's worth taking a look (I have no affiliation with them, but I think they have some good ideas).
 
Have they ever done a stool test? A Fecal Calprotectin is an easy thing to order and could give interesting results. I also second the MRE and maybe a pill cam to look in those places where the scope can't as it doesn't sound like "just IBS" to me.

What country are you in? Is a second opinion an option?
Thanks for your answer,
No, I've never done a calprotectin stool test. I'll consider having one done, it looks to be able to yield interesting results. Pill cam isn't available here (actually it is, but as far as i know the conditions to fulfill are extremely harsh to meet, basically they must be certain it's a Crohn or something like this but unable to prove it). I can and will discuss a MRE. A second opinion is possible.


Hello and welcome. I am sorry or your suffering. You would need to repeat the colonoscopy at a moment like now when you are symptomatic. Also as suggested, in the meantime, you could do a fecal calprotectine stool test. This can help orient a diagnosis.
Thanks, unfortunately having a repeat colonoscopy isn't easy, docs must deem it absolutely necessary. I'll do the Calprotectin stool test.

You may want to see another doctor to get a second opinion. One way to do this is to go to the ER the next time you are experiencing these pains.
There are several GE doctors easily available in my area, so a second opinion is something that can be available easily for me, I'll look into it. So, I don't really need to go to the ER for a second opinion. I only go to the ER if my symptoms are too severe and appear to me to require to be investigated ASAP.

This forum is great for Crohn's and UC, but your problem might fall under the microscopic colitis (MC) umbrella. I've been telling some people here that they should check out the Persky Farms Microscopic colitis forums (Google it). The tend to consider things like IBS-D, mastocytic enterocolitis (etc) to all be a part of MC. They have a very specific approach to treatment that works well for some people. It's worth taking a look (I have no affiliation with them, but I think they have some good ideas).

I don't know much about microscopic colitis. and my doctors never suggested this diagnosis. But I 've read a bit about it, wouldn't biopsies have diagnosed it? Never checked out this forum, thanks for the link, I will have a look. By the way I think microscopic colitis is considered a form of IBD where I live.




By the way my family has a lot of bowel issues, most of my family has (or had for my deceased relatives) IBS (IBS-C mostly, one IBS-D, one other weird case of IBS-D with lots and lots of mucus and severe fatigue (but he hates going to the docs, so he never had any medical attention or tests)), it's worth noting there's also a case of UC, and there's me.
 
Yep colonoscopy could have not shown anything if you were not having symptoms at the time of it,, my colonoscopy showed nothing ,I was only having some mild symptoms at that time but 3 months after this test i got very sick suddenly and had to have emergency surgery, then find out its crohns afterwards, so you should try getting the test again or any other tests you can , I hope they will find out the problem for you soon , it must be so frustrating not knowing an if nothing is working thats suppose to work for IBS then is hard to believe its IBS
 
Yep colonoscopy could have not shown anything if you were not having symptoms at the time of it,, my colonoscopy showed nothing ,I was only having some mild symptoms at that time but 3 months after this test i got very sick suddenly and had to have emergency surgery, then find out its crohns afterwards, so you should try getting the test again or any other tests you can , I hope they will find out the problem for you soon , it must be so frustrating not knowing an if nothing is working thats suppose to work for IBS then is hard to believe its IBS
You might ask about a mri.
 
You say you had a clostridium difficile infection? maybe this was the trigger. This could leave you with post infectious ibs and maybe some microscopic inflammation.
 
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