I just came from my GI appointment. We discussed the new onset of incontinence since the pelvic floor therapy. We are holding off trying to correct any bad effect from the previous therapy, where the bladder was helped but the rectal muscles were not: just the opposite. She said we'll wait to see what Mayo does.
I showed her an app on my phone for tracking my IBS, called "Bowl Move." She was very interested in getting the app for other patients to use. The only problem is that it did not have share ability. They got in touch with the app creators. By the time I got home the app had been updated to include the ability to share with doctors and to refer it to others. Wow, that was fast!
We also discussed the effects of Sjogrens on the GI tract. She stated that Sjogrens isn't very common, especially to the degree of affecting the body in such a quick amount of time like it's affected me. She asked me how many flare ups I've had since I was diagnosed, then she looked back at my app (to track IBS). She asked if the rheumatologist discussed the importance of staying hydrated. I told her she had, that she told me to increase my water intake to 100+ liters each day. Shaking her head no, she said water is important, but when I'm in a sjogrens flare and my body is severely affected, it's because the sjogrens is battling for "rehydration" throughout the whole body, where the intestines is sucking all the water out of the stool causing the constipation, and from the skin causing splits. It's also why my lips, fingers & tongue seems to be splitting. She told me that in order to rehydrate it will require more than just water. She said to use Gatorade, Powerade, Pedialyte, or find a recipe online for "rehydration." She said it's important to replace electrolytes.
That was very interesting and makes a lot of sense. I just thought I'd share in case others had been told to increase (just) water. 🙏🌼