For those with motility/bowel issues
Posted 01 March 2009 - 01:25 PM
Thanking you all in advance
Posted 01 March 2009 - 04:02 PM
I make sure I eat enough fiber. I stay away from cheese or any constipating foods. My main problem is constipation, and if I have to take pain pills then I'm really in trouble. I try to use Miralax on a semi/regular basis.
Posted 01 March 2009 - 04:45 PM
I don't suffer from constipation or diarrhea, it is quite normal, I just pass small amounts at a time, up to 20 times a day every 2nd or 3rd day. I also have chronic cramps,nausea and sometimes vomit. Very occasionally I get diarrhea at times.
Posted 01 March 2009 - 05:15 PM
Have you looked at the page on Gastrointestinal Involvement? There is a section specifically on Bowel problems.
I find my best bet is to eat plenty of fruits and vegetables and stay away from too many gluten containing products. I don't have a gluten intolerance, so far as I know, it's just that breads and many cereals cause me problems.
There is another thread running on Bowel Issues that you might want to read.
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Posted 02 March 2009 - 12:06 PM
Please keep in mind I have no medical training. I once tried to pick up a PDR (Physician's Desk Reference) and it was too heavy for me, so I gave up on all medical ambitions on the spot.
If you haven't already, I'd suggest you consult a scleroderma treatment center for evaluation and treatment of all gastrointestinal issues. As it happens, some people with scleroderma have died after increasing fiber in their diet, and gastrointestinal dysfunction is a significant cause of death in scleroderma. Fiber may be the answer for some of us, but a low-fiber diet may actually be the ticket for others.
Additionally, you might be interested in our page on Gluten Intolerance, which is a possible cause of scleroderma and many other autoimmune diseases and can greatly worsen any existing g.i. issues, as well.
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Posted 02 March 2009 - 01:20 PM
Summer, sorry you're having this issue and I have nothing to offer other than can you get a different GI doctor as they are actually supposed to help! They may not have the expertise for sclero matters and I don't think you should just be left to get on with it.
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Posted 02 March 2009 - 05:48 PM
Shelley, all of my specialists are at a major hospital and they are familiar with scleroderma. I had a colonoscopy nearly two years ago, which showed mild diverticulitis, I also had a number of biopsies taken. I tested negative for gluten intolerance and irritable bowel syndrome (IBS). I am due to see my rheumatologist in a couple of weeks, hoping I can get some answers then.
Posted 02 March 2009 - 07:22 PM
I have the same poblem with my bowels. They finally diagnosed me with a bacterial overgrowth in the small bowel. My doctor prescribed antibiotics and that has kept things under control for over 2 years now.
I also agree with some of the others when it comes to high fiber, it really makes me sick.
Posted 03 March 2009 - 05:30 PM
Thanks for replying to my post, I have had bacterial overgrowth before, I thought you had to have constant diarrhea all of the time with BO.
Maybe I'm wrong...... maybe someone will chime in soon.
Posted 07 May 2009 - 09:01 AM
You have gotten some great advice. I wanted to add a couple of other things. I have dealt with substantial motility and bowel issues over the last 3 years. Unfortunately, our bodies are so unique that what might be a bad food for your body is okay for mine. What is good and bad is unfortunately different for everyone. It took me a long time to figure this out.
The person who made this clear for me and has been instrumental in getting me on the right track with my nutrition is not a doctor, but a nutritionist. I see her once a week and it has made a world of difference,.
I am on a diet right now where I was actually given a blood test that analyzes my body's reaction to various foods. I actually have a card that is color coded. Green foods are okay. Yellow I have a mild reaction and red I stay away from. Initially I could only eat a small variety of foods. As time goes on you add a new food each day keeping a food log which tells you if the new food has caused you any problems such as diarrhea, bloating, abdominal cramps, etc. It has really worked for me. It is very restrictive but the change in how I feel is worth it. It shouldn't be done, however, without the assistance of a medical professional.
Best of luck.
Posted 07 May 2009 - 04:56 PM
I think some of this is caused by birthdays! I will have my 76th next month.
Posted 08 May 2009 - 05:44 PM
This is what has worked for me. I have taken a motility drug for five years now, two on normal days and four on bad days. I have given up pastas, cereals, high fat foods and stick with fresh foods for the most part. I"M NOT PERFECT by any means. Cereals and pastas and even too much bread just give me problems now and any processed foods or high fat foods give me a lot of motility problems. When I have bad days for flare ups, I decrease my fiber intake a lot, some days down to liquid only and very small amounts of food. I don't even like to drink a lot of water on those days.This is what has worked for me. I hope you find your way as it makes life a lot easier.