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Years of chronic GI distress - what else to do?
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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Can you say more about what's been tested so far? You said negative for Celiac. Have you had a colonoscopy, any scans (CT or MRI), any other labs or tests?
There are so many possible causes and directions to go with what you've shared so far. Have you ever done a breath test for intestinal bacterial overgrowth? Have you had any motility studies?
The autonomic nervous system is another possible area to investigate because it is very involved in bowel motility. Various types of dysautonomia can cause some of the problems you're having. Do you have any documented conditions that may not seem immediately relevant to gut function, but could be - diabetes, neurological conditions.....
When you passed bloody stool, was a colonoscopy done? How was the gastroparesis diagnosed?
I'm sorry for what you're going through. I am many others here can relate to these kinds of difficult issues.
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1 Reaction@jacqincalifornia Great questions! Thanks! I've had many colonoscopies and all seem normal (except for 2 hemorrhoids); and yes, I did have one following that colitis attack a few years ago. All was fine. However, I am remembering now a dr telling me that I had a tortuous colon. I've not had any breath tests nor motility studies. I have received a lot of blank stares from doctors over the years when I ask about those! LOL
Taking the Benefiber the last six months (plus 1 cup of prune juice at night), has worked well for me. Felt like it was life-saving from so many years of suffering.
I should also mention that I am going on a trip (train, plane and bus) in a few weeks and am scared to death about going to the bathroom in public (regularly in the morning and any painful events that may occur); so I remembered that the dr over the years had mentioned about taking Miralax, a small dose regularly. I took a small dose on Friday and one on Saturday. I had awful stomach upset Sunday afternoon. Did I take too much? Trying to find something that works to "poop on demand" while I'm on this trip!
@cardinal26 From a fellow tortuous colon sufferer - I feel you, lol!
It's pretty hard to overdose on Miralax. My GI doctor has told me to go ahead and take two doses in a single day if need be. Whether that will give you the control you're hoping for on your trip I don't know.
You didn't say if your primary care doctor has been handling everything or if you have a gastroenterologist. It sure sounds like a gastroenterologist would be a good idea for you.