barefut

Gi Issues/treatment

14 posts in this topic

I have GAVE or Watermelon Stomach. I have an endoscopy every 2 months and they cauterize the areas that are bleeding. I've had it done so many times that it's not a big deal.

 

April

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Hi Barefut, I have the usual reflux/hiatus hernia combo and usually take 40mg of pantoprazole (PPI) but up it to 80mg on bad days which usually works for me. The lower GI problems are much more of a problem with periods of no bowel action, followed by colic and hyperactivty which can be pretty disruptive as cannot venture too far from a loo. I'm not on any medication as has only recently become a problem (and also not keen to take yet more tablets) but will discuss with the Dr next week. I also get bloating (glad tunics and smocks are back in fashion!) What problems are you having?

Lizzie

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Thanks April, Sorry you have this to deal with. :(

 

My main GI problem is actually bowel related. I should have been more specific but it's not something I enjoy talking about for obvious reasons! :rolleyes:

I wondered what, if anything, helps with the symptoms of:

 

urgency

cramping

lose stools/diarrhea

incontinence

frequency

 

I am getting tired of it. It wipes me out. Some days I'm afraid to leave the house.

 

Thanks for your help,

Love,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Barefut, have you had the usual colonoscopy? If so then your doctor must know of your problems. My gastro doctor gives me something like Xifaxin or Levaquin to get rid of the bacterial infection. The incontinence is Usually caused by bacterial overgrowth. After the inital bacterial problem is solved I take 3 pills (Colestid) twice daily to keep my bowel problem in proper prospective. I was also afraid to leave home at times. I keep a standing prescription in my drawer so I don't have to go more than once or twice a year to see my specialist. If you have more questions you can email me and I will try to clarify things better in a different way. Hope this answered what you needed to know. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Barefut,

What a bummer! I have the watermelon stomach like April, but I don't have the issues you do. Take care,

Nan

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Hi Barefut,

I also have all what you mentioned except the incontinence, I'm not too sure whether mine is diet or sclero related though.

 

I know if I eat what I should be eating, you know, lots of vegies, fruit and stuff and cut out processed foods and cakes and things I am usually alot better.

 

If I eat junk food and cakes and things, I really suffer the next day :blink: , and sometimes can visit the toilet up to 5 times (for number 2) the next day.

I know what you mean about it being exhausting and not wanting to leave the house, maybe you should experiment with diet and see how you feel then.

 

Take care and good luck

 

Celia

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Hi Barefut,

 

I have occasional bacterial overgrowth and yes it caused incontinence a few times,(thank goodness I was at home each time). I take acidopholus (herbal ) and the doctor reccomended Xifaxin which worked good. Hope you relief . Susie54

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Barefut,

Most of my sclero problems are G.I. related. I take Nexium, Carafate, reglan and now the doctor has added Zantac. My egd today showed narrowed opening onto the stomach and an ulcer, therefore the added Zantac. So far the other meds have been working good, will have to wait for a while to see if new med makes any difference.

Have a good evening,

 

Sherion

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Hi Barefut,

 

I had watermelon stomach for years before being diagnosed with SSc. It wasn't a particular problem until the SSc started affecting the motility of my small bowel. What the doctors discovered is a small bowel bacterial overgrowth. Prior to the SSc diagnosis I had bowel surgery (pseudo bowel obstruction) and lost 80 lbs , it nearly killed me.

 

The fix turned out to be simple, I take three different antibiotics rotating them each month.

 

I still have the occasional problem, but I feel like I got my life back as well as 40 very needed lbs. ( The other 40 lbs was a bonus)

 

Joel

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Thanks for your replies everyone.

 

Sheryl,

I did have a colonoscopy and an upper GI study back in April. The colonoscopy was normal and I never saw any results in writing regarding the upper GI study but the doctor who gave it said, "looks good" but that results would go to gastro doctor to read and since I never heard anything more I figured no news was good news.

 

Joel,

How is bacterial overgrowth diagnosed? Is it just by symptoms or is there a test?

 

Sherion,

I was prescribed Reglan but had jaw jerking side effects. Regaln is supposed to help with motility right?

 

So, right now I am not taking anything for my GI troubles except the 20 mg Omperazole 2x/day but that doesn't help my bowel symptoms. In fact, the surgeon who took out my gall bladder said that PPI's can cause the symptoms I'm having - so can sclero itself though I've learned.

 

Oh yea, I have also been taking a tablet form of probiotics which does not seem to be helping much.

 

I guess my next move will be to try to cut out the dairy. I read somewhere that people with sclero can become lactose intolerant even if they have never been before in their lives. I guess it's worth a shot. I will miss my yougurt and ice-cream!

 

Thank you all again for telling me what medications you all take. I will look them up to find out more.

 

Joel,

Do you have any adverse side effects from the anitbiotics?

 

Thanks again all,

Love,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Barefut,

 

A naturopath did a stool sample and determined I had an overgrowth somewhere. Then an infectious disease doctor figured it out that it was in the small bowel and put me on antibiotics. I was on cipro and flagyl for year and then it stopped working. Now I'm on cipro/flagyl, Augmentin and Xifaxin rotating each month. As far as adverse affects, I have noticed some staining on my teeth (my dentist said that it may be from the antibiotics).

 

I hope this helps,

 

Joel

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GI related issues have been a major problem for me. I got considerable relief when I switched from Nexium to Aciphex. I also took Reglan for a while, but stopped it due to its side effects of depression.

 

My major issue is the reflux fluid (even though non-acidic) filling up my esophagus and lungs causing many problems. I am considering surgery as a final resort.


Kind regards,

 

Kamlesh

 

 

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I completely understand what you're going through!! In addition to Watermelon Stomach, I have GI issues every day. If I'm not constipated, I have diarrhea. I went to a specialist at Duke and he determined that the muscle around my bottom has stopped working so I am incontinent too. I wear a pad daily and keep an extra pair of underwear with me in case I need them. It is so frustrating and embarrasing!! I'm constantly worried that I've had an accident. :( The only treatment the doctor recommended was biofeedback, but it's rather time consuming and I miss enough work with all the other doctor's appointments I have to go to.

 

Warmly,

April

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