It's a bit disappointing when you go looking for a support group/forum and there is nothing within your area. I seem to think it's a very neglected area when there are so many ostomates out there going through their dailies and are either not coping with their stoma or just doing everything wrong and there's no one or group to help them vent or get advice.
Gus
May 18, 2009 11:27 pm
Past Member
May 20, 2009 5:31 pm
Hi, my name is Clare and I am 34 years old. Due to an operation that went wrong, I ended up with a stoma. In the next few months, I am going to have a reversal. Does anyone have any information or advice for me, please? I would be very grateful for any input.
Thanks, Clare.
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Posted by: ejbetty
Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
Gus
May 24, 2009 9:11 pm
Hi Clare,
Don't worry too much about the reversal procedure. It's still major surgery, but once you're healed, you will almost forget about it over time. I had this done after losing my colon and I recovered really well. The problem was I had Crohn's disease resident in my rectum and it was removed. Good luck and heal well. Let me know how it goes.
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tarababy
May 29, 2009 9:00 am
Hi Gus, I tried to start a support group here in Oz where I live after I became an Ostomate, for a lot of different reasons... and blow me down, it didn't really go anywhere even though I tried for 3 years. Ostomates just didn't want to share or let anyone know they actually had one. If there was a free feed, no worries. As soon as I wanted to go legit and take membership fees... bloody hell, I didn't see them for dust. So good luck if you ever find one. This site became my support group. Cheers, Tara
Gus
May 31, 2009 7:01 am
Hi Tara,
Yes, I'm beginning to see that. It's sad, really; there are a lot of people locking themselves away for no reason. Anyway, you stay healthy and enjoy life. Thanks for replying.
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baba
Jan 03, 2010 10:05 pm
Gus, I get the biggest kick out of you. I love that you can be so funny and caring with all that you have been through. Keep your chin up and keep up all the good work that you do making everyone happy on this site. Happy and Healthy New Year!!! Baba
Tee Bag
Jan 24, 2010 6:12 am
Hello Gus,
I am new here and had a complete proctolectomy in 2/2003. Feel free to contact me if you like to chat and share stories.
Tee
I am new here and had a complete proctolectomy in 2/2003. Feel free to contact me if you like to chat and share stories.
Tee
Past Member
Mar 07, 2010 5:02 am
Hey Gus, it's Fennen. I want to be friends with you. I just read your blog. That sucks. I can help you. I have a colostomy bag. I almost died at fifteen because I have ulcerative colitis. My large intestine was killing me. If I didn't get my colostomy bag, my large intestine was going to be blocked and explode, poisoning my internal organs. Let's be friends. Nice profile and photo.