Reversal Surgery from Ileostomy - any Helpful advice?

[DianaT]

Hi. I have had an ileostomy since March 2006. I had UC for eight years, since the birth of my daughter. In February 2006, I had a severe flare up of UC - not able to eat for 2 wks+ and going to the bathroom 20+times a day. I was admitted to the hospital, put on predisone and after 2 weeks they did sigmoidoscopy. After this test my stomach started to feel like it was on fire, and severe burning sensations occured in my stomach. Upon speaking with doctors at the hospital, they just gave me pain killers (morphine) and increased the predisone. This went on for 2 more weeks... I was on painkillers constantly and my stomach pains were getting worse, even though my BM were slowing down. Doctors wanted to do another sigmoidoscopy to see if the predisone was helping my condition and I was very upset, because my pain level was increasing. After 4 weeks of this rollercoaster of pain and living in the bathroom near my hospital bed, one evening was extremely bad. My nurse had come to give my nightly sleeping pill and found that I was not in my bed. She then knocked on the bathroom door (no other nurse in four weeks had done this!). I told her to come in and told her about my increasing pain and that at this point my stomach was ballooning out. This was aout midnight on the evening of March 17. She called the doctor on call that evening and sent me down for x-rays. About an hour later I had 4 surgeons rush to my bedside telling me that my colon was perforated and that if they did not operate within the next few hours, I would die. Well, to make this long story short, I enden up having my entire colon removed and an ileostomy pouch created. This surgery saved my life - not to mention the angel (my nurse) who if not for her, I would have gone to bed , taken my sleeping pill and not wake up the next morning. I still can't get my head around this. After surgery, I had many complications - infections, fevers, chills and water on my lungs, 2 blood transfusions due to enemia etc.. I remained in hopsital for 2 more weeks and after a total of 6 weeks, finally went home to my husband and two children. It was very hard for me to adjust to my ileostomy and I went through more trouble in July 2006 and November 2006 when I had to go into the hospital again as a result of blockages related to scar tissue. The doctors told me at the time of surgery that I could have this reversed if I wanted to in the future. I have now decided to have the reversal and am scheduled for surgery at the end of June - in just a few weeks. I am quite scared, especially having gone through such a tough tiime previously. I still have a long road ahead - this surgery to create an internal pouch and then after three months another to connect everything and remove my ileostomy. I am healthy now I want to do this because if I don't I will always wonder what If, however, what about if it doesn't work once connected? Will I be having BM like when I had UC?
I know that everyone is different and that I will not know the outcome unless I try but it still makes me uneasy knowing that I have to go into the hospital and go through another long road. Does anyone have any words of wisdom to pass along to me? Any comments would be apprecated. And thanks for reading this verylong story of mine - I think I should write a book...one day.

[Lynne]

Diana,
It sounds like you're talking about a J-Pouch, so others will contribute here - I hope - since I am not one of those folks. I do know that you should not expect drastic changes immediately after surgery. It takes lots of work and exercise to get your pouch into "shape", and you will definitely have lots of trips to the bathroom for awhile.
I'm going to link your post to the General and YODAA Boards as well.
Good luck to you !

[TheFallGuy]

Hi Diana,
I just had a J pouch created six weeks ago and so far i am doing well with having from 5 to 7 bms a day although somtimes after i go I wonder if i am heading back to my days of uc in that the stooles are of liquid content but this gets better in time as your pouch expandes and takes over for what your large intestine used to do for you...It will be weird going to the bathroom the other way again and remember when i was in the hospital after my J pouch was created thats all i started worrying about and was this thing going to work for me and when i had my first bowel movement i was like telling my doctor look i did it send me home ... I think really for me it was my confidence in my doctor on well my surgery was going to be and felt if things didnt work out and still had a bag i had a really great surgeon who did everything they could. make a list of questions you may have and email me and would to help out....gotta run

Jeffrey

[Paully's5.0]

I'm a j-poucher as well, I'd be more then happy to talk to you via email or on the phone if you're interested, just shoot me a PM.

[sandyrn]

I had a total colectomy, J-pouch. and temp. ileostomy when I was 20 from UC. It was a wonderful option for me. I have gone 12 years without ANY problems at all. I realize that it is not perfect for everyone, but it really has been a blessing for me.

I did develop a fistula in my J-pouch 2 years ago and after several unsuccessful surgeries to fix it, I now have a 2nd temp. ileostomy. But, I should using my J-pouch again by September. Never had a problem with pouchitis (knock on wood).

I have about 6 BM's with my J-pouch - kinda the consistency of oatmeal. I could eat almost anything I wanted. It took a few months for my pouch to stretch and learn to absorb fluid.

I can answer any J-pouch questions you may have!

[ALLIELEWIS86]

My name is Allie, I am 20 and I have had my j-pouch since I was 13, I was diagnosed with Ulcerative Colitus when I was nine and was pretty much hospitalized til I was 13, I took so many steroids that my knees look like swiss cheese to this day . I had an ostomy as a transition surgery for about 6 months than I got my j-pouch. Unfortunatly I did not take the whole illness very well at that age and so I refused to visit the doctor much. Because of this I know that I am not as healthy as I could be. I have had my jpouch for seven years and I think that I am doing good but I do have some complaints. I have had pouchitis pretty much all seven years and they did not remove all of the UC so i have some tough moments. During the day I do pretty good if I just watch what I eat. If I stay away from pop it is a good day I take Loperamide religiously and am all around happy with my health. I consider myself very lucky. I have a tattoo on my back that says No Guts All Glory! I will answer any questions I can....