Living with J-Pouch and Considering Permanent Ileostomy

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super bear
May 06, 2009 2:39 pm
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.
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.
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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.
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
super bear
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 .
 

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super bear
May 21, 2009 2:45 pm
Hello eddie ,  thanks 4 your support and help , much appreciated, did you spend a long time in hospital after the operation? and was the recovery when you went home , how did that all go for you? also how long was your time in surgery?