Hello..I was wondering if anyone has scleroderma. I was diagonised with scleroderma along with an overlap of RA, lupus, sjogrens. Because of this underlying condition, this was the main reson that I had to have my ileostomy. Just curious if others have had this experience as I have. Thanks! Catherine
Catherine
Nov 28, 2011 11:41 pm
Past Member
Nov 29, 2011 5:59 am
I, like you, have had a variety of diagnosis. RA, Lupus, MS and many more. I am currently working under Dercums Disease (probably correct). I will read about sjogrens and scleroderma - two of many considerations for me - but I don't remember enough to understand about the relationship with ileostomy. I remember that it is all related to autoimmune system disorders - the body attacking itself. I have several of those including thyroid removal, and no more pigment. So nothing works correctly and I suppect it is all interwoven. I don't have anything more to offer just now but I will be watching to see how you are doing and if there are other related conditions as people respond. Interesting inquiry.
I have been on this site for a bit more than a year. After surgery I had no answers about anything. I found many answers - practical and support - from people here on this site. Lots of really good people.
Welcome, Carol
I have been on this site for a bit more than a year. After surgery I had no answers about anything. I found many answers - practical and support - from people here on this site. Lots of really good people.
Welcome, Carol
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Posted by: Primeboy
Hi Mike and all. I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year. I can tell you that when I came to this website six years ago I was truly ;impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become. I also came to appreciate that having an ostomy is not the same thing as having a disease. Pardon ;my pun now, but ostomies and cancer don't belong in the same bag. One is a solution, the other is a problem. Celebrating National Ostomy Day ;is also well outside my comfort zone. That's like celebrating National Wheel Chair Day. Come on!
I think there is a ;need for improved ;public awareness of ostomies, but I am not sure how that's best done. There ;remains ;some social stigma attached to our situation, and it's acutely felt among our young. We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else. I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family. People will know how to react when they ;see ;how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.
On a personal note, my son has been suffering from ulcerative colitis for years just like I did. I am very concerned because people with UC are at a higher risk for colon cancer. Years ago my GI told me to get annual colonoscopies to be on the safe side. I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate. Since then I have always ;conveyed a positive attitude to ;my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day. Father and Son moments!
Someone once wrote that our children are the letters we write to the future.
PB