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Sjogrens + IBS = dehydration

Jun 30, 2015 5:02 PM

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. 🙏🌼

Jun 30, 2015 5:25 PM

Oh Flappsy!! You have been through so very much. The nightmare of being dehydrated from the Sjogrens and the IBS. You really need a break from all of this stuff that plagues you Ina daily basis. I hope that they are able to help you with your symptoms. As always, You're in my thoughts and prayers.

Jun 30, 2015 5:42 PM

Flappsy that's so interesting about the rehydration I try to drink enough of water every day , I never thought of drinking gator aide,or that there would be a recipe for it . I have to be careful that it will make my sugar go up . I wonder if it would have less sugar if uou made it yor self ?

Jun 30, 2015 7:14 PM

Thanks AlwayZ. God & you all get me through it, day by day, one step at a time.

Weezie, I was concerned about the calories and sugar in Gatorade. She told me there are recipes to make our own that shouldn't be that bad. I haven't had a chance to look any up, but she said it takes multiple ingredients including salt and baking soda. I'm going to check it out tomorrow, after another appt. Let me know if you find a good one. 🙏🌼

Jun 30, 2015 7:36 PM

Flappy,
Have you tried tonic water to rehydrate?
There are some kinds with very little sugar that taste better than the high sugar ones.
I don't know how, but I once ended up in the ER for dehydration even though I had 60 or more cups of water that day.
They gave me water through IV and I was fine, but I'd been hallucinating and looking back it's scary how I was feeling but it also felt fun.
The memory still gives me chills.
I think it likely had to do with the gene mutation.
My neurologist told me my body has enough water, but my body acts like water is sand or something.
The tunic water helped a lot.

Jun 30, 2015 9:01 PM

No I haven't Ferretbandit. I'll look at the store tomorrow. Thanks for the suggestion! 🙏🌼

Jul 03, 2015 5:23 PM

Flappys my dentist just told me to use baking soda for my teeth--My mouth feels like it's on fire and water doesn't help. I also just got punctal occlusion because my eyes will not retain any tears... it doesn't help much except I don't have to use as many drops. You'd think I asked for a pot of gold! I've been complaining about dry eyes from shogrens for years and finally asked the eye dr how bad it had to get before we tried something other than rewetting tears and compresses. I think he could tell I was ready to find a new dr. I'm sure the opiate use makes dryness a lot worse. I didn't realize that about water either so thank you! I do wish we had more choices without sugar or sugar substitutes. I'm going to go take a teaspoon of honey...it's moisturizing!

Jul 03, 2015 9:15 PM

Marsemouse, our various health conditions & our medications are harmful to our moisture. I've tried some moisture lozenges recommended by the sjogrens foundation, but it's not worth the money. Biotene does make an oral mouth rinse and a gel that soothes some, especially when my tongue cracks. All day today I've had those tiny painful bumps and oral thrush spreading. Have you pulled up pictures of Sjogrens oral rashes? I googled them and omg! 🙏🌼

Jul 03, 2015 9:45 PM

Oh Flappys I'm so sorry you have to deal with oral thrush :( I have biotene gel and found a rinse called TheraBreath at the pharmacy that I really like . It doesn't taste as sweet and chemically (but only the icy mint flavor!) I'm sucking one of those lozenges right now but you are so right! A very expensive way to buy cheap candy!

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