for the last 10 years i have been living with the j pouch , for the last year i have been suffering from pouchitis, constantly, now i am ready to have the permanent ileostomy . has any body been through this major surgery and could you tell me how it all went.? A nd also has anyone been on the prednisolone 4 a while and endured side effects ? thankyou.
Past Member
May 06, 2009 2:39 pm
cee
May 08, 2009 7:22 pm
I am currently on Prednisone and have been before. I find this time around it is making me feel hyper and a little Jumpy. I also developed, and am again, a round face and the round belly. I had a temporary illiostomy (3 months) which was then reversed. I was able to manage it without much difficulty although of course I expected the reversal. I was advised against having the J pouch because one of my docs said "everybody develops pouchitis". I am now scheduled to have a permanent colostomy in August. Hope this helps. Good luck.
MeetAnOstoMate is a remarkable community of 41,405 members.
“I mostly read and still feel like I belong.”
“Doctors took notes; they want others to find this website.”
“From midnight blowouts to big wins, there’s always a hand to hold.”
Immarsh
Hi All, If you have an " old" or recent ostomy, this is the place for you. I think I've been a member for more than 15 years, but I have had my surgery, since I was a kid of 15 ( do the math-that's more than 60 years ago). As a teen, with a new ostomy ( for Ulcerative colitis) my parents dragged me off to my first ostomy association meeting. I wasn't happy, but in the long run, it's the best thing that happened to me. I met others, older, and teens like me, adjusting to the changes. A group of us started a Young adult group, and helped each other, and even visited kids who were new to the world of ostomies. But soon I married, and moved out of state, and although made some connections with other NJ ostomates, I became pretty much isolated. Until I discovered MaO. By then, I was having a myriad of other medical issues, and my aging stoma " wasn't doing well". I received a lot of help and support from members! I was pleased that I was also back to supporting others. I met a gal on line (from Papua New Guinea) who was trying to help ostomates in her country. There is a scarcity of supplies in some other countries, and unlike the US, insurance to pay for supplies isn't available. When my son followed his "love" twenty years ago, and moved to Australia I took advantage of an opportunity to help other ostomates. On one of my first visits to Oz, I brought a suitcase full of Ostomy supplies, handed them off to an Ostomy assoc. On the Gold Coast, who then had a friend take them to PNG. They were grateful for the help, and Janet and I still write.. This is the place to be, if you need help, and it also gives you the opportunity to provide help and support to others. Feel free to write, if you'd like to chat, about things ostomy, or life in general. Best REgards to all.. Marsha
cee
May 08, 2009 7:23 pm
PouchitisI am currently on Prednisone and have been before. I find this time around it is making me feel hyper and a little Jumpy. I also developed, and am again, a round face and the round belly. I had a temporary illiostomy (3 months) which was then reversed. I was able to manage it without much difficulty although of course I expected the reversal. I was advised against having the J pouch because one of my docs said "everybody develops pouchitis". I am now scheduled to have a permanent colostomy in August. Hope this helps. Good luck.
Advertisement
Hollister
Using ostomy accessories to create a personalized pouching system can help you prevent leaks and protect your skin.
Learn about the physical and emotional benefits of using ostomy accessories.
Learn about the physical and emotional benefits of using ostomy accessories.
eddie
May 11, 2009 4:17 pm
I have an ileostomy, have had for about 6 years I think, the surgert for me was pretty painful, but I had cancer and had the entire colon and rectum removed, I would be glad to help in anyway if you think I can. Good Luck
Eddie
Eddie
Past Member
May 21, 2009 2:24 pm
i would like to say thanks to cee and eddie, for replying to my post regarding the pouchitis, and the surgery that you both have had. I feel a lot better knowing that i am not the only one thats having to go through all this. ''Cee'' what you said about the prednisolone side affects is exactly what i have been experiencing. Yes, my heart feels like its racing , anxious, on edge, hard to relax, and wasnt my self at all. But now the dosage is being weaned down and i feel a bit normal now, the only thing is the pouchitis is flaring up a bit though. But not to worry , i am booked in 4 the 9th june to have the j pouch, and the rest removed , and permanent ileostomy. I hope your surgery in august goes well 4 you , i will be thinking of you .
My Ostomy Journey: April | Hollister
