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Years of chronic GI distress - what else to do?

Posted by cardinal26 @cardinal26, Aug 17 9:32am

Hello all! I have had 50+ years of GI distress. I have come up negative for celiac disease and a few years ago had an inflamed large colin and passed blood, so they said it was a colitis attack; the only official diagnosis I've received is that I have IBS-C/D. I also have a mild to medium case of gastroparesis.

To summarize my symptoms, several times a month (and when I am really active, it can be several times a week), I have intermittent severe pain before bowel movements, long bathroom episodes, and constipation/diarrhea swings; sometimes the pain is so intense, I also vomit. I also suspect that I have motility problems. I don't seem to empty efficiently. After my GI distress episodes, I have a day or so of recovery and then back to norm. My "norm" could be semi-soft to hard bowel movements. If I don't have a regular, daily movement, I can be assured that "an episode" will be in my near future. It is horrible to live like this.

I thought I had been successful the last few months as I have given up Greek yogurt and read that certain "proteins" can be the culprit. I seemed to be doing well. Also was taking Benefiber and added 1/2 capful of Miralax daily -- this seemed to be working. But the last few weeks has been awful and I am now afraid to do anything.

Has anyone had symptoms like this, and what specialist and testing eventually identified the cause?

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cardinal26 | @cardinal26 | Aug 26 7:12pm
In reply to @researchmaven "Hi cardinal26, have you kept a food diary? There could be food triggers. I assume you..." + (show)
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Hi cardinal26, have you kept a food diary? There could be food triggers. I assume you have explored the A-Z of IBS? Things like peppermint oil capsules, low FODMAP eating, the fiber in your diet (too much, too little).

Are you particularly busy/stressed prior to your problems starting? There is a huge brain-gut connection and a lot of literature on it.

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@researchmaven I am seeing a nutritionist and started keeping a journal again. The foods I eat, the time I eat and the time I get sick. Even ate at a fine restaurant for a wedding reception, got sick and several months later, ate at the same place and got sick again. Contacted the chef and had a wonderful conversation to what ingredients were in my what ate, but no solution.

I LOVE peppermint capsules. They do work and I do need to take them regularly, not just when an attack happens.

I am familiar with low FODMAP but haven't been devoted to it. Worth a try for sure.

My nutritionist reacquainted me with Iberogast. Most recently after a restaurant night of eating and speeding home to the bathroom, I gave it a try when I got home and instead of getting sick .... SUCCESS!! My inflammation was reduced and I did not get sick. I shall take this on my upcoming trip and pray it works!

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researchmaven | @researchmaven | Aug 27 11:49am
In reply to @cardinal26 "@researchmaven I am seeing a nutritionist and started keeping a journal again. The foods I eat,..." + (show)
Profile picture for cardinal26 @cardinal26

@researchmaven I am seeing a nutritionist and started keeping a journal again. The foods I eat, the time I eat and the time I get sick. Even ate at a fine restaurant for a wedding reception, got sick and several months later, ate at the same place and got sick again. Contacted the chef and had a wonderful conversation to what ingredients were in my what ate, but no solution.

I LOVE peppermint capsules. They do work and I do need to take them regularly, not just when an attack happens.

I am familiar with low FODMAP but haven't been devoted to it. Worth a try for sure.

My nutritionist reacquainted me with Iberogast. Most recently after a restaurant night of eating and speeding home to the bathroom, I gave it a try when I got home and instead of getting sick .... SUCCESS!! My inflammation was reduced and I did not get sick. I shall take this on my upcoming trip and pray it works!

Jump to this post

@cardinal26

My guess is you have found a possible long term solution and to keep trying the Iberogast ---seems like a good strategy. No need to go crazy on low FODMAP if you have a solution.
(Note that for IBS, my version of it symptoms occur 24-48 hours after ingesting the offending food . Having a quick run-to-the-bathroom problem, just after eating, might be a non-IBS food intolerance. For example, I know someone that has that with capsaicin.)

As far as FODMAP issues go, chamomile, the first-listed ingredient in Iberogast is high in fructan, a FODMAP. (Fodzyme might be good for the FODMAP fructan. I need to try it.)

But, here is some interesting and likely good news for IBS/FODMAP folks. There are recent studies that show the worst FODMAPs are GOS and Fructan. And many of the listed foods on the Monash University FODMAP app (under $20 for life and the updates) are foods that have only one of the six types of offending FODMAPs in it. So, with home trials, one might discover more foods to safely eat!

Google the study titles to read all about it:

"All FODMAPs Aren’t Created Equal: Results of a Randomized Reintroduction Trial in Patients With Irritable Bowel Syndrome"

"Reintroducing Foods After Completing Restrictive Low FODMAP Diet - American College of Gastroenterology"

"Gut Symptoms during FODMAP Restriction and Symptom
Response to Food Challenges during FODMAP Reintroduction:
A Real-World Evaluation in 21,462 Participants Using a
Mobile Application"

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