Stomach Issues

I have been diagnosed since like 2005 with scleroderma and since then other things have occured. I've had renial crises. At first when I finally found out what I had and read up on it I had to just stop reading. It was like everything I read had the word fatal in it and I just couldn't deal with it. Over the past few years my health has dropped but right now for the past year I've been doing fine except for I keep having stomach problems. I have been put on flagile to help with the bloating and helping food move through. I take it and it's suppose to clear up the problem after like a month or so but when I come off of it in like three days my stomach starts to bloat and act up again. I can't eat cause it makes me sick. It's like I can eat like a can of soup (chicken and stars) and I'm full for the whole day. When I force more I end up throwing up. Even just drinking liquids make me feel like that. Is anyone else having some of these symtons or just anything simular. I'm looking for a solution cause the next medication they reccomend is $300.00 dollars a month and my insurance doesn't cover that.

By spiritlove
Posted November 1, 2009 at 9:28 pm
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Do you have a good gastroenterologist? The next step sounds pretty drastic to me and I'd want a second opinion. Is Flagile the only medication you take?
Yes Scleroderma can be frightening but, it isn't automatically fatal. I'm 70 and been diagnosed for 6 years but, have a lot of other autoimmune diseases as well. Are you working with a rheumotologist?
What medication are they suggesting next?
I take 40 mg of Prilosec before breakfast and dinner; Carafate before meals and bedtime and 300 mg of Zantac at bedtime. While the results aren't optimal they seem to keep the vomiting to a minimum. Are your drs. aware of your financial situation? You might want to look into financial help through needymeds.org. Maybe you can get some help paying for what you need.
But, first I'd ask for a second opinion or even look for another dr. And if you're only dealing with a General Practioner see a specialist. Lots of drs. don't really understand Scleroderma. Please don't let it scare you. Educate yourself through the Scleroderma Foundation and I hope you subscribe to Scleroderma Voice. You'll find lots of credible information and uplifting articles there.
spiritlove

By Coastiewife
Posted November 2, 2009 at 9:28 am
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Boy, you could have written my life's story!!! I have terrible stomach troubles. GERD, Paralized stomach, decreased movement in the esophogus and slow motility throught the intestines. Prior to any type of med, I was just like you, couldn't eat more than a few bites, food starying in my stomach for a long time, bloated and reflux. add on top of that that I also have a hernia didn't help either. But once I got on my meds, which is Reglan, things have smoothed out a bit better. I take 15mgs four times a day. but i have also gotten to know my digestive tract and how it reacts to various foods. I know that if I am planning on eating ice cream or have a protien shake, I do not need to take a pill for that meal because things just slide right through unaided. I have been working with a licensed Diatition and she and I are working together to put together some sort of diet that will allow me to decreased my meds a bit and still maintain a healthy wieght and have more energy and less BLOAT!!!

But I also agree with you that fluids fill you up for hours too. I have to just limit them and realize that if I am going to have a large glass of water, I will be eating less food at that meal and therefore i know I will be hungry later in the day....maybe.....lol!!!!!

One last thing that I have done is all by erased carbonated beverages from my diet completely. they just seem to fill me up with gas and heavens knows, I got enough of that on my own. I drink low calorie lemoniade mostly, and water.

Hopeyou figure things out in a quick manner.

By drewness
Posted November 3, 2009 at 10:43 am
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I was having bloating, reflux, cramps and pain in my esophagus when I swallow. My doctor gave me Protonix 40 mg and over time it has helped. Occasionally I get reflux at night when asleep, but otherwise much better.

By Gina_Bell
Posted November 4, 2009 at 11:50 am
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Yes ma'am I do. I go to Emory in Atlanta. I have some good doctors. I have been on Reglan and Carafate. Then came the Flagile. I got to make an appointment to see my GI specialist within a week or two. I take just one Prilosec and that does me good. I have constant diarreha. I've had it on going for like 2 years now. It is caused by some of the medication I take though. I tried immodium and that didn't help completely but it slowed it down. I just recently went to the doctor where I live not my specialist for pain the the lower part of my stomach on the left. They ran a urinal test to make sure I didn't have a bladder infection and a CT scan to rule out kidney stones. Didn't have either. He said that he could only see something affecting the small intestine and I needed to see my GI doctor to see where I need to go from here. I'm not sure what the name of the next medication is. Something I can't pronounce but if I need it then thats the next step I got to take.

By cspnc56
Posted November 5, 2009 at 8:32 am
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Oh my! I was just about to start a discussion on my stomach when I saw this one. I just had an endoscopy tuesday 11/3. for problems with food or pills getting "hung" this started about 2 mos ago and getting worse. I had a Ba swollow done first (nasty)
didn't show anything. The endo showed my esophagus was ok
but he said there was an area going into small intestines that was ?? this area has several "red spots" he did a biopsy that will take a week to find out. Meantime my Hgb continues to drop.
First of Oct. it had dropped to 10.3, then in a week it was 10.1,
then 9.6 and this tuesday was down to 8.6. They called and asked me to come yesterday for labs again and I am scheduled monday 11/9 for more labs. This is when I was to add Cellcept to help my skin tighness. I am weak. I have had reflux for yrs and been on r/x
Now I am on prevacid 40mg am and 40 mg pm. The Rheum I saw in Wilmington 10/12 was concerned about hgb and He added Reglan
The GI doc told me reglan was no good not to take it.
Don't know what's going on . I see my rheum monday maybe he can have some answers. I can't see my other Rheum who specializes in SD until January he is in process of moving to Raleigh, NC and will then have private practice
This thing is scary. I was really looking forward to getting the Cellcept .
Good luck all!

By spiritlove
Posted November 5, 2009 at 6:33 pm
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Coastiewife and Gina Bell, i'm glad you haven't had any side effects from Reglan. It's a dangerous drug and they're trying to get it off the market. I wouldn't take regardless of symptoms. My gastro said today if you've seen anyone with the side effects you'd never prescribe it again. I have a discussion under Reglan side effects please read the replies.
As for carbonated beverages they are a real issue. I occasionally have one knowing I'm going to pay for it.
Sometimes, it just seems worth it.
If you pay attention to your body over time you learn what it will accept and you can manage but, it's never easy. I'm glad you're seeing your specialist. Sounds terrible but, there are days I'd trade you my constipation for your diarhea. Just kidding, MIralax and stool softeners are a lot easier to deal with than what you're experiencing. Good luck. Keep us posted.
spiritlove
Just to cheer everyone up, I'm doing so well, at the moment, I don't need to go back until another crisis (if and when). So there is hope.
I'm sorry for your distress but, please believe you'll find an answer.
spiritlove

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