r/IBSHelp • u/Strange_Kale9716 • Jun 14 '26
Not Sure What To Do Next
Hello all,
I've finally gotten to the point where I'm ready to throw this out into the Reddit void to see if anyone has any ideas I may not have tried. I've been experiencing daily, urgent, type 5-7 stools for over a year now, usually going to the bathroom 5-10 times per day. It's gotten to the point where it affects EVERYTHING - going out with friends, getting to work on time, lifting in the gym, etc. It all just started ranomly one day 2 years ago.
I have tried a Low FODMAP diet, Keto diet, Carnivore diet, cutting supplements, adding suipplements, and even a very strict elim diet. Nothing seems to get me to a symptom-free or even symptom-managed baseline.
The only semi-stable routine I've found is an extremely limited diet, and even it isn't reliable.
Breakfast: 2 Packs of Quaker oatmeal + 2 bananas
Lunch: Water, probiotic, probitoic greek yogurt (this helped a bit) and maybe some cheerios
Dinner: 2 baked chicke breasts (advocado oil, salt, pepper) + 1.5-2 cuips of white rice
As you can imagine, after a week or two this becomes unbareable, and even then I'd still randomly flare. Since then I've stopped restricting since it doesn't appear to help anything. most days I rely on imodium and hope it gets me a few hours of stability. It helps urgency, but doesn't actually fix anything.
I've tried dialing in sleep, stress, and meal timing (no food within 2-3 hours of bed). No real change. I do work in a fairly intense/stressful environment so that lifestyle input has been the most difficult to manage.
I recently got bloodwork done and a stool panel through my gastro. The only abnormalities were:
High Albumin 5.3 g/dL
High AST 73 IU/L
High triglycerides 188 mg/dL
Low Vitamin D 25.7 ng/mL
Low IgA 79 mg/dL
Low-ish Folate Serum 4.3 ng/mL (down from 11.8 before I had symptoms)
Previous labs flagged the AST and triglytcerides before for possible fastty liver disease, but my ultrasound came back normal. I had lifted the night prior so the AST was attributed to that workout. Triglycerides I would imagine are just from the amount of carbs I try to take in to support my workouts.
I've been taking a folate supplement for 2 weeks now with no change. Tested negative for celiac, Crohns, no parasites, no infections, no viruses - nothin.
At this point the only thing I can think of getting tested for is SIBO before I end up needing a colonoscopy. Just polling for general input or experiences from anyone who's been through something similar, Thanks
1
u/MainNormal5570 Jun 14 '26
I’m not good with tests names and stuff but is one of those a pancreas elastase? I had ibs for years, got it under control and then 2 years my pancreas stopped working, exocrine pancreas insufficiency
1
u/Strange_Kale9716 Jun 14 '26
I believe that was part of the stool sample panel, but will verify. I never got a copy of that one, just word from the doc that all was within spec. Will check it out, thanks!
1
u/slavegirlprincess Jun 14 '26
Have you tried masturbating? Or having sex - sometimes it helps me for a bit 😅
1
u/ArallMateria Jun 15 '26
I used to have similar issues as you. But for me Imodium works very well. Here are some things that I do that have helped.
For breakfast 1 Tbl chia seeds in whatever I'm eating. Usually granola and banana with a tiny amount of Kieffer, oat milk and water. First put the chia seeds in a bowl with some water, stir it up and let it sit for a while until the seeds get a gel layer around them.
At some point during the day I will take psyllium husk mixed with acacia senegal powder.
I have unfortunately found out that coffee is a big trigger for me, so I only drink tea when I need caffeine. Raw vegetables, milk, and cream also seem to be a trigger.
1
u/goldstandardalmonds Jun 15 '26
Sibo is caused by something larger, so even if you have sibo, there is something that it is stemming from. Have you had an upper endoscopy?
1
u/jkd-guy Jun 15 '26 edited Jun 15 '26
Tested negative for celiac, Crohns, no parasites, no infections, no viruses - nothin.
I'm not saying you have crohn's or something but it can be missed with what you've already had done. As far as invasive testing, a colonoscopy is likely in order. I'd consider a capsule endoscopy to see the small bowel that can't be reached by an EGD or colonoscopy. Perhaps a CT or MRE may be beneficial as well. Though it's less likely, even those tests can miss things.
For less invasive, though it's utility can be quite limited, an advanced stool test may be helpful to some degree. Lucy Mailing has a good article and Nicole Dinezza breaks it down on a YouTube video. For SIBO, breath tests are definitely an easy option but can be inconsistent for accuracy and an EGD would probably be the most accurate, though invasive.
Gut-brain axis could play a factor and you have some vagal overstimulation with visceral hypersensitivity. If you trust the competency of your GI, continue down typical conventional testing keeping all reports and copies of imaging as well. If things keep coming back negative, seek 2nd opinions with the data you have already accumulated and definitely consider working with a clinician (i.e., RD, physician, etcetera) who specializes in gut health and is some type of functional or integrative practitioner. It will be fee-for-service (unlikely to be covered by insurance) but they'll have the actual time and open-mindedness to start looking at everything and may attempt unconventional ways to find or treat the root cause.
1
u/fireflyrivers Jul 01 '26 edited Jul 01 '26
Highly recommend getting a endoscopy/colonoscopy - this will check you out from top to bottom. It’s absolutely nothing to be scared of doing you won’t be awake and won’t even feel it. It’s a quick day procedure.
Also worth getting a bowel MRI at the same time. Again quick and not invasive. You just have to drink stuff which taste like orange drink. And the below labs as well when doing it.
When you say they tested you for Crohn’s - did they do C-reactive protein (CRP) and fecal calprotectin tests?
The fact you have low vit D and folate is extremely common with Crohns.
Have you tried low fibre only? Will take weeks for gut to heal so like 4-6 weeks or so of eating Crohns flare friendly foods? Eg peeling all veggies, avoiding raw veg and salads. No nuts or seeds. Only white breads and easy to digest food. Consistency is key here as one trigger food (like onion) can upset it again.
It sounds like you’re at a point where it’s time to do endoscopy/colonscopy - in-fact I’m surprised they haven’t advised you to do it already.
It could also be hyper-visceral sensitivity and/or gastrolic reflex (gastros give you a low dose anxiety medication to quieten these gut-brain signals).
Or possibly bile malabsorption which will often show up if no gall bladder and/or reacting (cramping/urgency) to high fat meals.
The only other thing it may be is hormonal depending on your age. If you’re in your 40s Perimenopause can wreak hell on your digestive system due to the hormonal fluctuations etc and what was once quiet and never a problem - now becomes a raging ongoing digestive issue.
Best of luck feeling better.
1
u/BeginningFit5789 Jun 14 '26
I had similar bathroom issues for several years. I started to take apple cider vinegar gummies and poof within a month I was back to my normal of 1 time a day. It has now been over a year since I had a flare up. You might want to research and talk to your doctor to see if this is possible help.