Stomach polyps in SS patient

[sunny22]

I was dxd w systemic sclerosis ( diffuse SD) 12/12. I had an endoscope 10/12. The findings were numerous polyps(too many to count he says) in the stomach. I had a scope 3 years earlier and there were no polyps. My GI doc biopsied 1 polyp which was negative. I was a little freaked out to hear these findings as i had never used PPI’s ( polyps are common w proton pump inhibitor use) and more disturbed when i heard his plan. The GI told me we were going to do absolutely nothing about them and he was insistent that he would not even monitor them. From my research, if no PPI’s are used than this condition can happen to autoimmune patients and it is rare. So i believe I ‘m in the later category, caused by SD. I also know that the polyps can become cancerous. I feel very uncomfortable following this doctors advice and probably should seek another opinion as i kind of feel like a ticking time bomb.

My question is do any of you have this stomach condition (Not caused by PPI’s and not to be confused with watermelon stomach) and if so, what was recommended to you by your doc?? I saw the photos and It is quite scary. The polyps look like blisters along the stomach lining. Should i not be concerned? Does it sound advice? I am new in the game so I thank you in advance for all your help, it is so appreciated! Sunny

[BG]

Sunny,

I’m not diagnosed with SD but appear headed in that direction and I don’t have polyps in my stomach that I’m aware of (because no one has looked) but I wanted to respond to your post because I have polyps, cysts and nodules on various organs throughout my body and no one is monitoring them either despite having had polyps and pre-cancerous lesions removed in the past which makes me very uncomfortable. It’s my understanding that polyps (and perhaps cysts and nodules as well) can be due to chronic inflammation and that, yes, they can become cancerous and therefore should be removed or monitored. In your case, it would be impossible to remove them without removing your stomach so they should be monitored to some extent, perhaps not frequently but every year or so. Because they’re most likely due to inflammation, treating the inflammation or the cause of the inflammation should treat the polyps but who knows? Everyone who has an autoimmune disease, especially diffuse scleroderma, has an increased risk of developing cancer and needs to be screened for cancer regularly. If you have a significant family history of cancer then your risk of developing cancer is even higher. I would insist on monitoring the polyps and if the current doctor refuses to agree that’s necessary, then I think a second opinion is in order.

Barb

[BG]

Sunny,

You may find some helpful information to guide you in the article accessed via this link:

http://emedicine.medscape.com/article/1093801-overview

Barb

[sunny22]

Hi barb thanks for your replies! I am sorry you seem to be having similar issues. Yes, i believe the polyps are from inflamation. When i went back to see the GI doc last week w my concerns, he then told me i did not have “numerous” but “several”. So something changed lol! He did agree to re-check next Fall. He is no pro AP Therapy. He said he has some SD patients who are doing fine on the mainstream meds. All i could say was that i was glad they were doing well now. He did say that it was crucial to take the mino properly. I advised him i was aware and appreciated the concern. So at this point i will carry on as usual and keep my fingers crossed that i have no co infections from Lyme.

Barb i do understand why you are uncomfortable also with this attitude from many docs that following-up isnt necessary.this is why i really feel we have to be managing/ overseeing our own care. Gone are the days of putting all your trust into your doctor’s hands, to do the best thing for your health. It is such a business now. We need to research and be knowledgable about what is happening to us and what can safely be done about it. Roadback is a blessing. We have find doctors who see that we are looking for partners in health.
Barb keep us posted on how you are doing! Sunny

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