I have had UC for 10 years now. I have been on Pred. and 6-MP for 51/2 years. Last year I developed pancreatitis from the 6mp and now have steroid induced insulin dependent diabetes. I also have osteoporosis. As long as I stay on the steroids the pain is manageable with some bleeding and about 4-6 bm a day. I have been on Remicade for 3months without success. I have tried coming off the steroids every 4-6months and only last about 3-4weeks and the pain is unbearable and bleeding increases tremendously. My GI will not tell me to have surgery, he says I have to make that decision so that I am content with the long term outcome. He does say that I am not a candidate for a Jpouch due to the severity of the UC in my rectum and the long term steroid use. The UC is all the way up to the transverse colon. Unlike most people I am very thin on th steroids even after 5 1/2 years. Probably, from all the diarrhea. I am very nervous about the surgery. Will it make a big diference? Will I be able to wear the same clothes? How much longer can I stay on all this medication? Can someone give me some personal input and what they would do.
Red
Red,
I had a colostomy done last febuary and it was the best thing I have done for myself in many years. Living with the ostomy for me is nothing compaired to what I was going through before. I can not tell you that you should or shouldn't have the surgery, But weigh the pros and cons of what you are going through now to dealing with wearing a pouch, the cleaning it, having to adjust to dumping of the pouch, etc. Try talking to an Ostomy nurse, they can be a great help and you get a much better idea of living with an ostomy.
I had a colostomy done last febuary and it was the best thing I have done for myself in many years. Living with the ostomy for me is nothing compaired to what I was going through before. I can not tell you that you should or shouldn't have the surgery, But weigh the pros and cons of what you are going through now to dealing with wearing a pouch, the cleaning it, having to adjust to dumping of the pouch, etc. Try talking to an Ostomy nurse, they can be a great help and you get a much better idea of living with an ostomy.
19 months Sigmoid Colostomy / 20 years Crohns / Type 1 Diabetic 6 years / Ostioarthritus 14 years / Asthma 21 years.
* I think it may be time for a colorful metaphor*
i also have suffered like you are and even tho i didnt want the surgery in 83,
it saved my life and now i am thankful for it , even tho it can be agrivating.
now i am 50 and got it when i was only 27. love
edwina
it saved my life and now i am thankful for it , even tho it can be agrivating.
now i am 50 and got it when i was only 27. love
edwina
Red,
I am a moderator on the UC forum, and so living with UC, i can understand why you are nervous. That and the fact that i have to decide within the next week which surgery i want. In my case they are nicely encouraging me to have the J-pouch, but i really would rather have the bag. I have had UC for probably at least 11 years, but only got dx in 2003, which (i think) allowed it to progress to the severity it has, and i have pancolitis. I just really dont think i ever want to use the toilet again, and i certainly dont want to go 15 times a day, which in some cases happens with the surgery. The bag sounds like it will be a challenge to get used to, but i am living what really cannot pass as a life, and ive never really had one, im only 23 now. I just wanted you to know you are not alone in going through this. As to the steroids, they told me i could come off them soon after the surgery, and that i would probably not need any other meds...i cant even fathom that. I take 22 pills a day now. Anyway, i just thought id reply so you know im with you there...i have the same questions. There are some great website if you google "ostomy", especially Shaz's website.
~Eileen
I am on Prednisone 15mg, Asacol 1600mg 3x/day, and 20mg Bentyl 2x/day
Currently experiencing a nasty old flare. Trying to get a referral to a surgeon...we shall see!
It will always get better...always.
I am a moderator on the UC forum, and so living with UC, i can understand why you are nervous. That and the fact that i have to decide within the next week which surgery i want. In my case they are nicely encouraging me to have the J-pouch, but i really would rather have the bag. I have had UC for probably at least 11 years, but only got dx in 2003, which (i think) allowed it to progress to the severity it has, and i have pancolitis. I just really dont think i ever want to use the toilet again, and i certainly dont want to go 15 times a day, which in some cases happens with the surgery. The bag sounds like it will be a challenge to get used to, but i am living what really cannot pass as a life, and ive never really had one, im only 23 now. I just wanted you to know you are not alone in going through this. As to the steroids, they told me i could come off them soon after the surgery, and that i would probably not need any other meds...i cant even fathom that. I take 22 pills a day now. Anyway, i just thought id reply so you know im with you there...i have the same questions. There are some great website if you google "ostomy", especially Shaz's website.
~Eileen
I am on Prednisone 15mg, Asacol 1600mg 3x/day, and 20mg Bentyl 2x/day
Currently experiencing a nasty old flare. Trying to get a referral to a surgeon...we shall see!
It will always get better...always.
i am new to my illeostomy about a year now . had cancer. i can't keep my bag on and can find no help from nurses.i am glad im still here ,but need help and advise very much. i am 84. and have always been active .
red, the bag isnt as bad as u probably fear it is. Im 26, just had surgery in January, and if u read my past post u will see how anti surgery i was. I finally started moving my bowels thru the wrong part and couldnt put it off any longer. My ostomy is temporary, but its been ok. Not nearly as bad as i expected. U will be able to wear the same clothes. I didnt believe it, but i can. And they even fit! I'd lost soo much weight when i was sick that none of my clothes fit well, thats no longer a problem. Ive been on prednisone and it was the worst. The longer some people r on it, the worse the side effects for some. I have what ever that genetic thing is that makes u react to the 6mp, so they couldnt keep me on it.
Ur doc is right about one thing, that surgery ideally should be your decision. So while im not encouraging u to have it, I do suggest that if you think this is something ur going to end up needing either way in the long run, that you dont wait until ur no longer able to decide and/or prepare. I hope u find relief soon
bebby, im sorry that you cant keep a bag on. Whats the problem? is it leaking? is it not sticking? what products are u using and where is ur ostomy nurse? Lastly, at 84 u should definitely be eligible for home aid. Have u checked into this? Please respond. I hate to hear ur struggling so when u dont have to.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!
"For God has not given us the spirit of fear....."
Where does mine come from?!
Ur doc is right about one thing, that surgery ideally should be your decision. So while im not encouraging u to have it, I do suggest that if you think this is something ur going to end up needing either way in the long run, that you dont wait until ur no longer able to decide and/or prepare. I hope u find relief soon
bebby, im sorry that you cant keep a bag on. Whats the problem? is it leaking? is it not sticking? what products are u using and where is ur ostomy nurse? Lastly, at 84 u should definitely be eligible for home aid. Have u checked into this? Please respond. I hate to hear ur struggling so when u dont have to.
25 y/o female- crohns disease since 14
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!
"For God has not given us the spirit of fear....."
Still Adusting
Healingwell.com has been my Godsend...Thank you
FIRST OFF, YOUR GI WILL NOT DETERMINE WHETHER OR NOT YOU ARE A CANDIDATE FOR JPOUCH SURGERY, THE SURGEON MAKES THAT DECISION!!!!!!!!!!!!!! I am sorry but I get so angry when I hear this and I have heard it many times before. You have been on prednsione for a long time and if I were you I would opt for surgery because it's the only way you are going to get off the drug.
At this point you need to consider a surgical consult. I would highly recommend, with your history of pred use, that you find the best darned CR surgeon in your part of the country. If you need recommendations you can find them at www.jpouch.org The more experienced the colorectal surgeon the more likely for a successful outcome. You don't have to get a jpouch, you can opt for a k-pouch, a BCIR, or a permanent ostomy. But you need a consult so you can ask these questions.
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
At this point you need to consider a surgical consult. I would highly recommend, with your history of pred use, that you find the best darned CR surgeon in your part of the country. If you need recommendations you can find them at www.jpouch.org The more experienced the colorectal surgeon the more likely for a successful outcome. You don't have to get a jpouch, you can opt for a k-pouch, a BCIR, or a permanent ostomy. But you need a consult so you can ask these questions.
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
Umm... the original post is from 2004 :)
I have had an ileostomy for 32 years now due to UC.
I have had an ileostomy for 32 years now due to UC.
Moderator of the Ostomy Forum
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I'm not a complete idiot - some parts of me are missing!