Going back to the ileostomy - is it the right decision??

Hotaru,

Only you know how much you can stand. I have had my jpouch going on 2.5 years and have struggled with many of the issues you are dealing with chronically and from my experience,it does not get better. I have some level of pain every day and am very worn down by it. Some people will tell you it can take up to a year to adjust and I just kept waiting for things to improve. In my case they have declined.

My quality of life is nothing compared to what it used to be and I am hoping to gather the courage and TIME to under go a another surgery to possibly remove my pouch permanently. I struggle with cuffitis, pouchitis at times and a stricture and I am also on a lot of medications such as cipro, canasa and anucort at times.

You can try to wait a bit longer to see if you just take longer to adjust, but if you honestly feel like you felt better with the ostomy than the pouch, you may have already made up your mind. As my GI recently told me, it comes down to your quality of life. I just abhor the thought of more surgery at this time in my life with two teenagers and one trying to apply to college with all the time and effort that takes with help from me. I just don't have time for another major operation and recovery at this time in my life.

I had my takedown 4/30/2012 and had some serious complications...picc line, going and and off meds, going 10 or more times a day, pouchitis, cuffitis,bone pain, muscle pain, axx pain, when into menopause (soon turning 50 in a few days) after 2nd surgery, skin cancer (squamous cell). It certainly has been a long road to recovery. I was not able to go back to work as of yet!
It is now 9/2013 and I am finally seeing some changes for the better. I ended up going to an acupuncturists and did that for over 3 mos., costly but worth it. I can't explain what that has done for me both physically as well as mentally but I was at the end of my rope because the body just would not function. Yes, I do still have some issues but my quality of life has gotten better.
Hotaru I am not sure of what the answer for you may be however, I am hear to tell you that when they tell you 6 mos. to a year to heal it is true if not longer. At a year I was toying with the ileostomy; but like jeane, to even think of another difficult surgery I wasn't prepared mentally or physically. I am 5'9" and was weighing less than 120 lbs. I am now up 5 pounds as of yesterday so, it has taken me a long time to gain that weight. I believe our bodies (which we are all different) takes it time to adjust. Some take longer than others. When everyone on this board has said you need patience with yourself they are not kidding!
I wanted to relay my story because you are only 8 mos. out. At a year for me I was still having issues but did see some improvement with the pouch. I hope my story gives you reassurance that the body can get better with more time!

Roberta
UC 2007
failed all meds
j pouch to ileostomy 2/29/2012 (leap year)
takedown 4/30/2012

I had my j pouch removed two weeks ago after having it for almost 7 years. I had problems with it right away and they continued the entire time I had the pouch. Chronic pouchitis, took cipro and others for 6 and a half years. Tried humira and cimzia. Off and on prednisone, basically on it the last year straight. I work 4 hours a day and that was about it, I rarely left the house after work and slept terribly everynight. It just got to the point I knew I could no longer take the steriods and live without a decent nights sleep. I don't think it matters if it has been 8 months or 8 years you will come to a point when you decide how you want to spend your days. I didn't have a life, I was missing everything my husband and son would do together and that was a big reason I did it. I want to get out and enjoy life with my son and husband instead of staying home, afraid to go out.He is going to grow up fast and I have already missed to much. Best of luck to you!
Karen