I have noticed it is hard to get any kind of support going so we can get together and have fun. I know the names are listed in the magizine Phoenix...but it still seems hard to get together and fellowship, talk have fun..........anyone wit any ideas plese fee free ..michael
ryder
Jul 06, 2009 12:40 am
weewee
Jul 06, 2009 10:11 am
ya same here in montana where i am and support groups yummmm none here when i talked to my nurse she said they tryied and the turn out wasnt worth their time those that showed up all they wanted to do was be negative about it
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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
Past Member
Jul 12, 2009 5:26 pm
Dear weewee and ryder:
I've read both of your posts here and I'm very sorry to hear that there aren't any nearby support groups for either of you to go to.
I've been an ileostomate now for almost 23 years and have been part of a local chapter support group for about the same amount of time. Of course I'm also in Connecticut.
Perhaps both of you should try going to what was formerly the UOA's website and do a search to see if there is a nearby chapter that you both can go to. I have to admit that I haven't gone to a local chapter meeting probably since my son was born and he's 12 now!
Are either of you going to the conference in New Orleans? They are a great way to meet and chat with fellow ostomates!
Please know that I'll be more then happy to chat with either of you anytime you'd like, if I'm available of course. Just send me a email here and I'll be happy to add you to either my yahoo instant messenger list or msn instant messenger list. Instant messaging on those two sites is much easier there!
I look forward to hearing from you all.
I've read both of your posts here and I'm very sorry to hear that there aren't any nearby support groups for either of you to go to.
I've been an ileostomate now for almost 23 years and have been part of a local chapter support group for about the same amount of time. Of course I'm also in Connecticut.
Perhaps both of you should try going to what was formerly the UOA's website and do a search to see if there is a nearby chapter that you both can go to. I have to admit that I haven't gone to a local chapter meeting probably since my son was born and he's 12 now!
Are either of you going to the conference in New Orleans? They are a great way to meet and chat with fellow ostomates!
Please know that I'll be more then happy to chat with either of you anytime you'd like, if I'm available of course. Just send me a email here and I'll be happy to add you to either my yahoo instant messenger list or msn instant messenger list. Instant messaging on those two sites is much easier there!
I look forward to hearing from you all.
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Learn more about ostomy accessories, and when to use them.