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IBS Support Group

A support group for people with undiagnosed digestive disorders or those ... more

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LilMissMerrySunshine

Joined: 02/27/2010

My Story:

I have always had a "sensitive stomach", but once my daughter was born five years ago, I started having diarrhea. It gradually became 7 days per week, and 2 GI docs ran only basic tests and tried multiple meds, none of which worked. By the time I saw the third GI doc 2.5 years later, I was down to 92 lbs. He found a med that worked, ran every test (CT, endoscopy, colonoscopy, blood work, stool samples), but did not find anything. He diagnosed me with IBS.

I strongly believe IBS is a catch-all diagnosis for when doctors have eliminated everything they know about. I also believe that as the years go by, more diseases will be identified, and eventually IBS will not exist.

In the past six years, I have had multiple medical conditions, all seemingly unrelated. But six months ago, I became extremely ill and ended up in the hospital for 11 days. While there, it was discovered I had a cortisol problem. Unfortunately, my GI doctor blew this off on my follow-up, so I had to wait 3 months to see an endocrinologist. At that time, I was diagnosed with Addison's Disease (Adrenal Insufficiency). AI can cause so many problems, including "IBS".

I am now on replacement steroids for the rest of my life, and I am learning how to control my disease. It is very rare, so there is not a lot of information out there. AI patients have to be extremely pro-active.

I have recently learned I have such a severe vitamin D deficiency, I may have a secondary condition like Celiac. It will be anywhere from 6 weeks to 6 months before I know the answer. (Although I have tested negative on blood tests and biopsies, it is still possible I have it.) AI patients are much more likely to develop other auto-immune conditions in their lives, but frankly I would appreciate a chance to get the first disease under control without having to deal with another! We will just have to wait and see.

I still deal with GI issues off and on, and I still see a GI doctor regularly. My hope is to share what I have learned these last five years with others and to provide support as people try to find a diagnosis and/or control their symptoms.

The most important thing I can tell anyone is to listen to your body, push push PUSH, and don't be afraid to get another opinion...or four.

I wish everyone good health!

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Reply: And It was all going soooo well

Sheba - I can't do the vit C. I am very sensitive to citric acid, so I break...

Posted by LilMissMerrySunshine

Sheba - I can't do the vit C. I am very sensitive to citric acid, so I break out in ulcers in my mouth (and last hospital trip down my throat - ouch!) if I try that. So blah. I do know DH does it, and it seems to help him. I'm jealous!

Mags - I gave up and called the shrink's office today, and I'm glad I did. Boy, I really do LOVE this office! He's out of town, and she STILL got back to me in an hour. She told me he was out until the end of the week, and I thought holy crap, but before I could say anything, she said she had just spoken with him 30 minutes before, and if she didn't talk to him before the end of the day, she would definitely talk to him in the morning.

He said for me to go ahead and quit taking that sleeping pill (which he had cut in half). I think they are intefering with each other or something. I had already cut another pill dose in half and the wellbutrin from 3 to 1, and still no better. Anyway, she was pretty impressed when I told her how much I was sleeping. 15 hours a day, and want to sleep when I'm awake. I hope this helps, especially by the weekend. I'm tired of feeling sleepy and stoned. But as down as I've gotten about it (am I regressing?) Trey said he could definitely tell a difference. This is not illness, this is not depression, this is just drugged! And I see his point. So I'm forcing myself to do my PT once per day - not pushing to twice the way I feel. And this is just 30mg/day! (And I"ve been on other anti-d's over the years, so this ain't my first rodeo!)

That sleeping pill wasn't doing me any good, but it is so addictive, the doc said I still had to wean. So of course I wasn't going to quit taking it without his say so. They still haven't gotten my PT order in, but I see the endo Monday, and I plan to express my EXTREME displeasure. I will be almost 3 weeks out instead of the max 1 week the in-home lady told me.

I would be enjoying the trip if I didn't feel so guilty that DH is having to do everything! But frankly, they almost even out. LOLView Thread

Posted byLilMissMerrySunshine

5 Replies | Reply | Watch This DiscussionReport This| Share this:And It was all going soooo well Sheba - I can't do the vit C. I am very sensitive to citric acid, so I break...

Reply: And It was all going soooo well

Stoned on Cymbalta (although it seems to be getting better until today - not...

Posted by LilMissMerrySunshine

5 Replies | Reply | Watch This DiscussionReport This| Share this:And It was all going soooo well Stoned on Cymbalta (although it seems to be getting better until today - not...

Reply: figured it out!?

Honestly, you just never know. Some people have sensitivites to the weirdest...

Posted by LilMissMerrySunshine

1 Reply | Reply | Watch This DiscussionReport This| Share this:figured it out!? Honestly, you just never know. Some people have sensitivites to the weirdest...

Reply: first lyme appt

reel, I still see a GI doctor, even though my "IBS" is actually due to...

Posted by LilMissMerrySunshine

17 Replies | Reply | Watch This DiscussionReport This| Share this:first lyme appt reel, I still see a GI doctor, even though my "IBS" is actually due to...

Reply: Sick and tired of being sick and tired!

Did you have an endoscopy as well? I don't understand why docs will do one...

Posted by LilMissMerrySunshine

6 Replies | Reply | Watch This DiscussionReport This| Share this:Sick and tired of being sick and tired! Did you have an endoscopy as well? I don't understand why docs will do one...

Reply: rough night and day

Will they prescribe you anything for the symptoms? I know with my little...

Posted by LilMissMerrySunshine

5 Replies | Reply | Watch This DiscussionReport This| Share this:rough night and day Will they prescribe you anything for the symptoms? I know with my little...

Reply: Sick and tired of being sick and tired!

evl - have you been tried on other meds? I assume you are on donnatol for...

Posted by LilMissMerrySunshine

6 Replies | Reply | Watch This DiscussionReport This| Share this:Sick and tired of being sick and tired! evl - have you been tried on other meds? I assume you are on donnatol for...

Reply: Sick and tired of being sick and tired!

Were you diagnosed by a GI doctor? What tests were run? IBS is an elimination...

Posted by LilMissMerrySunshine

6 Replies | Reply | Watch This DiscussionReport This| Share this:Sick and tired of being sick and tired! Were you diagnosed by a GI doctor? What tests were run? IBS is an elimination...

Reply: corn is evil.

Next time I find a corn field, I'll have to burn it in your honor! I am SO...

Posted by LilMissMerrySunshine

3 Replies | Reply | Watch This DiscussionReport This| Share this:corn is evil. Next time I find a corn field, I'll have to burn it in your honor! I am SO...

Reply: Crohns and swollen lymph nodes and painfully

Although I'd LOVE to be able to help you, and some folks on here might be able...

Posted by LilMissMerrySunshine

1 Reply | Reply | Watch This DiscussionReport This| Share this:Crohns and swollen lymph nodes and painfully Although I'd LOVE to be able to help you, and some folks on here might be able...

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