Thiamine deficiency with DS?!

[SmartNurse]

Hi everyone,
I haven’t posted in years. I had my DS with Rabkin in 2015. I have been struggling for almost two years. Chronic constipation, bloating. Nothing helps. Had ever GI test all with no significant findings. I even had 3 months of invasive pelvic floor therapy. These symptoms started after I had a tummy tuck and other plastics done. Anyway, all My labs are fine. I religiously take all my vitamins and minerals. Here is the issue. I recently had labs done and I have thiamine deficiency. Like B1, Beri Beri! What the heck?!

Since I am unable to poop.... everything tried, from enemas to bottles of magnesium citrate, Linzess and that pelvic therapy. Only way I can exist as a semi normal person is the consume 1cup of miralax daily. I think this is equal to about 12 doses daily. I know this is totally crazy. I am a health professional myself and no one has come up with any idea what could be going on? I’m scared, and so uncomfortable every minute of every day. This has impacted ever aspect of my life. SOMEONE please help? I’ve tried everything I could possibly think of.

Thanks for listening.

 

[JackieOnLine]

I'm so sorry to hear this and hope someone with advice will be along soon.

 

[Justme222]

Sorry to hear you are having these problems. I wish I had some advice. I am only 3 months post surgery so I have nothing.
I hope someone here can help you. Everyone here has been great.

 

[talitali]

I’ve taken a B1 supplement for years. I can’t recall why I stated supplementing it separate but I did.

how much fat do you get a day? I was on the Miralax train for awhile and decided to stop and focus on fat instead and with about 2 cups of cream a day I have no issues anymore with constipation.

 

[southernlady]

Another DSer was having super trouble with constipation and finally her doctor got her approved for a colonoscopy a year earlier than typical. Turns out she had a cancerous tumor in her large colon. Had surgery shortly after that and lost about 1/2 her large intestine.

if nothing else has helped, consider a colonoscop.

 

[Larra]

I've heard of "bariatric beriberi" associated with gastric bypass before, but not with the DS. But I think it would be possible. Sounds like you need to take a thiamine supplement, and probably best to ask your DS surgeon how best to take it for good absorption.
I don't know whether or not the Miralax is part of the problem. I do know that thiamine deficiency can cause serious problems and whatever the cause, it's best to address this sooner rather than later.

 

[hilary1617]

Sorry to read you are experiencing this. (1) Assume you've tried magnesium hydroxide also? (2) Is there a possibility of any thyroid issues? (3) Are you diabetic?

 

[DianaCox]

Keshishian has done several (not sure how many - I think I know about 3) surgeries on DSers for redundant colon, with similar symptoms. I’m not sure if this is a common problem in DSers, in people who are morbidly obese, or some other common reason, but it’s worth checking it out. Probably get a colonoscopy too.