I sadly welcome you to the Bathrooms Are Our Best Friends Club! :(
I have suffered from bowel issues for 40 years now. The first diagnosis was anxiety related GI disorder. When I have panic attacks they go to my intestines, then I have to immediately go to the bathroom, but there may not be a bathroom, then I panic more and then the cycle continues.
20 years ago I started seeing a gastroenterologist. I had blood tests, stool tests, medicine, fiber supplements, gastric emptying study, endoscopy, colonoscopies and really no relief. I was diagnosed with Irritable Bowel Syndrome. I do have damage to my esophagus and some benign polyps in my colon. I accepted it as part of my life, endured being tied to the bathroom in the morning, and sometimes embarrassment. With the diagnosis of scleroderma I accepted it as part of that. With the addition of medicine that causes diarrhea I accepted it as part of that. When I urinated, there would be a piece of stool in the toilet that I was unaware of passing. Sometimes I would find a small piece of stool a foot or more away from the toilet (how did it get there?)
I started seeing a Functional Medicine doctor in May and begin an elimination diet to see what foods bother me. Although I felt better, the constant bowel movements never ended. They actually became worse. Most mornings I would have 7 bowel movements in the first hour I was awake, and continue throughout the day. I was eating healthier food, fresh, organic vegetables, keeping a food diary, eliminating gluten, dairy, soy, corn, and not really noticing any difference when I reintroduced them because I never really had improvement with my bowel issues when I didn't eat them. I do feel better and have lost 15 lbs. but wasn't getting a solution to my constant GI distress.
One weekend I decided to eat whatever I wanted. No salads, no veggies, no fruits, and oddly, I did better. So I discovered MY body can't handle all the raw vegetables. Then I noticed that when I travel I do better. When I travel I always used bottled water and although I started drinking bottled water years ago at home I used tap water for tea and cooking. I started using bottled water for everything this week and there was a big improvement in 3 days!!
I just had another gastric emptying study but do not know the results yet and due to the lung transplant evaluation had to see a new GI doctor for a 24 hour PH monitoring test. The new doctor specializes in celiac disease and women's digestive disorders and was assigned to me via the transplant center. She asked me a lot of questions and started talking about scleroderma with a great deal of knowledge. I asked her how she knew so much about it and she said before she decided to be a gastroenterologist she was very interested in rheumatology and wrote a paper on collagen vascular diseases effects on the GI system. I think I may have found a new GI doctor! She asked if I had ever had a breath test. I shook my head no and she explained that there can be an overgrowth of bacteria in the small intestine that can cause my issues so next week I am having a hydrogen breath test done. She is also investigating the PH monitoring study I need done for the transplant center to make sure she does it the way they want it. This is done via endoscopy, and she will do a biopsy for celiac disease at the same time. Then I will have the colonoscopy and perhaps a better management of my issues can occur.
This long rambling has a purpose (why is it I can never write short posts?) First, seek medical help with your issues via your current doctors and a gastroenterologist who knows something about scleroderma. Second, it might help to keep a journal of what you eat and how it affects your system. If you are eating a lot of fresh fruit and vegetables, try eliminating them for a couple of days as they can be hard for some people to digest. The elimination thing is all hit or miss experimenting and it may take a while for it to sink in that something like too much of one food is a problem.
I am sorry to hear about the Sjogrens on top of everything else. Was the diagnosis done via blood tests or symptoms? All the diarrhea can dehydrate you and make you thirsty as well. Keep very hydrated. You know the drill with the Raynaud's, keep your core warm and have gloves everywhere. I really feel for you having to go through all of this.
Hang in there,