New Person

[Skeeter]

I am knew to this forum. Try to make this brief and give a little history, I have had pots for at least the last 10 years and probably longer. I had an ablation in 1998 and a pacemaker Sept. of 98. Have been on alot of different meds. and a lot of different problems with this along the way.

May of last year I had a GI pacemaker implanted because of sever motility problems was constantly nauseous and vomiting. The pacer has helped with those issues, but since Christmas time with the last three weeks being the worse I have pretty much had chronic diarrhea and know one is sure why. Cultures are normal, potassium is low, and have been Iv'd twice. I am so wore out and it is not in my nature to give up! All I want to do is sleep. I feel like I am useless to my husband and kids and everything is just so difficult. I have tried the usual meds. not much of anything helps. If anyone has any advice or has been through anything like this I sure would appreciate hearing from anyone. I have lingered and read posts but not really been up to responding. I only heard about this site a month ago, I think. Anyhow thanks in advance. Becki

[Guest tearose]

Hey Becki welcome!

I am sorry for all you are going through. You are having a rough time of all this with no seeming break in the clouds!

You must have something very wise in you to know to post here and keep looking for answers! Although I do have minor motility issues they pale in comparison to what you are dealing with. I can offer no experience or information.

I am just going to pull up a cushion and sit beside you while we wait for you to get some new information! You mentioned about dealing with kids and husband and surviving POTS in spite of it all! How are you managing? There are loads of posts on how to manage family and meals and working (for those who can do any of those) that you may want to read through. Go to the search box and look at the old posts. Please don't let yourself feel useless. I'm sure your family is happy you are there and able to do whatever you can!

In a few days from now I hope you will have some motility suggestions.

Until then, take care, tearose

[goldicedance]

Becki, I can really empatize (spelling?) with you. Right now, I am way down in a potshole. I was in the hospital for the past 15 days with severe diahhrea. They ran a number of tests and can't quite get a handle on the cause. Last fall, I had my gallbladder removed but the docs don't think my current situation is related. I return to my doc for iv in her office every few days. Initially I had c. difficile which seems to have been effectively treated per the culture. They are not sure whether I have secretory D. or osmalarity D.--whatever it is, I still feel crummy.

Now, I am trying pancrease to see whether that helps in my digestion I hope it does.

What do the doctors think is causing your problem?

Keep your spirits up, drink plenty of fluids, and watch some good movies.

This too will pass!

Lois

[Gena]

I am so sorry to hear about all of the pain and discomfort you're going through. I'm glad you found this board, as it can be an invaluable source of information, support and laughter when you need it most.

Whenever someone has GI problems, I have to give my standard line...

And that is many of us here have gluten intolerance or full blown celiac disease. I had diarrhea for months before doctors tested me for gliadin antibodies (a simple blood test that tells if you have celiac). Celiac is an autoimmune disorder of the small intestine (i.e., if gluten containing grains are ingested, the body views it as an invader and destroys the lining of the intestine). It's mostly hereditary. I have it, but once I went gluten free, my GI problems cleared up. And then I got POTS, and now I have some motility issues, but nothing severe.

I am not saying you have gluten intolerance/celiac, but it's always a good thing to rule out and it's easy to do. Many POTSies seem to have GI problems that are also gall bladder related, so you may want to check into that as well get testing done for parasites and other bacteria. Sometimes docs only test for certain strains.

Okay, that's my standard GI line and I'm sticking to it. I hope you find answers and relief soon. Welcome to the board.

[avais1]

Hello, and welcome! I am so sorry to hear you are not feeling well. I have intestinal motility issues that come and go, but nothing as severe as yours. One thing I can definitely empathize with is the nausea. When my dysautonomia desides to kick me in the gut, I fluctuate between having no motility (lovely paralytic ileus) or hypermotility (what my doc calls a warzone, because this is what it sounded like to her in her stethoscope) . The nausea is the worst symptom of any of it for me. These are the only things I have found that help:

1) Compazine

2) Ensure, broth, Pedialyte

3) Toast and crackers

4) Ginger Trips made by SolaRay (at most whole foods stores)

5) Unisom (a trick I learned from a pregnant friend)

For energy, I try Green Tea, but I avoid Ginseng as it races my heart. Also, cooking something with a little butter. Butter is a fat, and has a lot of energy packed into it. Just one pat will help. Otherwise, Extra Virgin Olive Oil.

Also, the most important enery motivator for me is MUSIC. I put on songs that I used to dance to, and pretty soon I get the urge! I may not make it up, but I start wiggling in my chair until I can make it to my feet!

Anyway, good luck to you, and know that you are not alone.