Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Digestive Health Support Group.
Connect
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.
-
Like -
Helpful -
Hug
3 Reactions@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.
-
Like -
Helpful -
Hug
1 ReactionI know you have probably already considered this but just in case. Have you cut out processed foods? Especially foods with preservatives. Also when cooking at home, do you feel any better?
-
Like -
Helpful -
Hug
1 Reaction@jacqincalifornia Yes, thank you, I do have a gastroenterologist. And that's good to know that it would be rare to overdose on Miralax. Right now I'm taking one teaspoon at night (and Benefiber during the day) and my thinking is that I will build up from there.
@parrot53 Great idea! I have cut out many processed foods. I noticed on a trip to Europe years ago, while I was quite nervous of getting sick, I didn't get sick once. I've heard from several people who had a similar experience. Must be something in the States and the foods we eat! I eat very little processed foods and what I do eat, I'm very careful. Also, yes, I'm safer making my own meals. And I have narrowed down select restaurants in my area where I've not gotten sick and have had "safe" experiences.
-
Like -
Helpful -
Hug
2 Reactions@cardinal26 I really do think our food industry is the cause for many of our medical issues. Europe has a better handle on food safety. We could learn a few things from them. Thanks for sharing.
-
Like -
Helpful -
Hug
1 ReactionHave any of you had a Nickel Allergy Patch Test? I have similar issues due to
a nickel allergy. The nickel comes from the foods we eat. Eating nothing processed and lots of meat has helped me. You might check out a low nickel diet online and try it for several weeks. It has worked well for my skin issues with the allergy but my GI symptoms are still an issue. I'm now researching what more can be done to improve several symptoms. Look into Systemic Nickel Allergy Syndrome for more info. You will be astounded the symptoms and may relate to a few. Yes, Europe is way ahead of this with their research on the topic of nickel allergy! It mimics IBS.
@cardinal26
I am so sorry you are going thru this. I too get blank stares and downright refusal for certain tests. I worry about travel and even short outings for lunch etc. I try to stick to my routine for constipation, eat lightly etc and travel with my bag of wipes, depends, clean undies etc. I gave had some rough times on vacation and thanks to an understanding husband and friends and my emergency kit have made it. I always know where bathrooms are. I wish u the very best in travel comfort.