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Scleroderma & Raynaud's UK (SRUK)

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Anyone else unlucky enough to have Raynaud's AND Crohn's disease?

Carol-C profile image
7 Replies

Anyone else unlucky enough to have Raynaud's AND Crohn's disease? I have both!!

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Carol-C profile image
Carol-C
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7 Replies
RosemerryVenet profile image
RosemerryVenet

Me too! Scleroderma, Raynaud's and Crohn's disease. Have had an ileostomy for 28 years. Never know what pain and symptoms are caused by what! Not much fun, is it?

Carol-C profile image
Carol-C in reply to RosemerryVenet

Greedy!! LOL No, it's not much fun. I had a temporary ileostomy several years ago so I know what it's like. Like yourself, I never know which pain is caused by what!!. Keep in touch

RosemerryVenet profile image
RosemerryVenet

Do you know if the Crohn's is related to the scleroderma? Was diagnosed with Crohn's in 1983 and the scleroderma many years later, so don't know if they are related.

Carol-C profile image
Carol-C

Hi Rosemerry - As far as I know there isn't a connection between the two. I was diagnosed with Crohn's in 1978 and joined N.A.C.C. not long afterwards (Nat. Assoc. of Crohn's & Colitis) and have never read about a connection.

Carol

Mistie profile image
Mistie

Wow! I seriously thought I was the only person in the world with scleroderma and Crohn's!!! So glad to know I'm not alone!!! I was diagnosed with Crohn's at the age of 14---I had been sick for over a year and weighed 64 pounds when they finally figured it out. I had an illeostomy bag for 6 months, I have such terrible memories of playing basketball my freshman year of high school and worrying constantly that it was going to leak. Then I felt great for a long time. I got sick last fall and finally had a colonoscopy---it had spread from my small intestine and now my whole colon was infected too. Humera has been a miracle drug for me. And then I found out two months ago at the age of 29 that the reason my hands look the way they do is because I have scleroderma. Now I take the Bar Exam in 9 days...stress and my disease don't go well together for me. Thank you so much for letting me know that you guys are out there, living a day at a time too.

flickchick777 profile image
flickchick777

Wow!!! My mom has Crohns and I have Scleroderma, so I know the struggles with both. I can't even imagine having both Crohns and Scleroderma! I'm so sorry you all have a double whammy! Hang in there!!!

Tony_da_Costa profile image
Tony_da_Costa

HI Carol-C, I also had scleroderma, mixed up with a bit of crohn's, reynauds and lupus as well. The crohns seems to still be present, as I still get serious reflux later in the evenings. But the other symptoms seem to have gone into remission. Iv'e now been healthy for about 10yrs and only on "natural medicine", no more pharmaceutical drugs. Just letting you know that we are out there and that these illness's can be beaten. Sending strength your way.

Tony from South Africa

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