Second surgery: J-pouch
October 9, 2008The first surgery went excellent and three months later, part 2. Technically, I could’ve lived and functioned after the first surgery–I just would’ve had an ileostomy my whole life (which wouldn’t be the worst thing in the world). The second surgery was more demanding as it involved the reconstruction of a pseudo-rectum out of my intestine. That was three weeks ago yesterday, and I’m going great, much better at this point then after my first surgery.
Keep fighting,
~Dennis
Question: How did your j-pouch surgery go? If you haven’t had the surgery yet, what are your concerns? Comment below!
Hi Dennis,
Your posts and videos have been very helpful to me since my emergency colon removal and dx of UC in October of last year. Since then I’ve struggled with shock, depression, anxiety, and finances (no insurance at the time or now), in addition to the medical issues. The good news is that six months later, my surgeon says that I’m doing well and ready for more surgery (steps 2 and 3) any time, and that she will refer me to specialists with more experience than her in step 2 and takedown.
I’ve been back at work for 3 months without much problem. It’s not physical (counseling), helps with my mood, and is necessary for the income. My concern is about how much time will be needed after step 2 to return to work. How did it go for you and others you know? I’m anxious because of some very negative accounts I’ve read at jpouch.com – unmanageable loop ileostomies, hospitalizations for dehydration, and overall very difficult recoveries after step 2. I’ve read here that many are able to return to work within 2 or 3 weeks after takedown, but what about after step 2? Thanks for any information you are willing to share.
Hi John,
The amount of time to go back to work, as with everything surrounding surgery it seems like, is a depends question. There might be a proliferation of bad stories online, but the doctors say most people do well with the J-pouch and don’t have many serious or minor complications, so we have to take their word on that.
For me I returned to work after 4 weeks. Other people seems about the same. Some people go sooner, but it all depends on how you are feeling. Not everybody gets the exact same three steps to surgery either: some people have 2 steps, some even 1 step, so however much work your surgeon does inside you will affect your recovery time as well.
Dennis
Dennis,
Thanks for your prompt response. Just so I understand, was that back to work for you in 4 weeks after final surgery, or after second surgery, or both?
Thanks,
John
2nd surgery.
Hi Dennis
I am due to have my J-pouch op on 15th July, and I am so nervous! I had my ileostomy in 2007 with the intention of having a family before embarking on the J-pouch but sadly that was not to be. It has been so long that I can’t remember too much about my first op, which might be a good thing!
When I had my ileostomy my surgeon made no mention of butt exercises, and they were only briefly mentioned when I put in for my pouch op last September. I haven’t really done many exercises, although I have been holding back mucus successfully for the last 4 years! I am still worried about leakage though. I’m also concerned about having a sore bottom as I know my stoma fluid makes my skin very sore.
I suppose my main concern is that I go through all of this and end up in a worse position than I am now. I just have to hold onto the thought that this is my only chance for getting rid of my stoma. I live pretty well with my stoma – I’m pretty tough, but sometimes I am sick of being strong and just want to sit and have a bloody good cry. I’m definitely at that point right now.
Any advice you can offer is very welcome!
Thanks
Leah
Leeds, UK
I understand completely your experiences,Leah. I had a total colectomy when I was barely 18, and my final diagnosis was Ulcerative Colitis. I went the entire year from 1993 to June 1994 believing that I was cured from this horrific disease so I went and scheduled my J-Pouch procedure that June of ’94. During that year, I had regained all of the weight I had lost, and I felt terrific, and that my life was getting back on track. However, immediately following my J-pouch procedure, (early post-op) while I was still hospitalized, I soon realized that my j-pouch wasn’t working; I thought I was feeling well, and my next step was going to be a normal, working j-pouch when it would be time for that third and final step on my journey to a normal life and health. However, after spending 10 days in the hospital post-op, I finally went home still believing I was cured from UC, and as I slowly began to recover from this operation, the complications began to manifest themselves in unexpected ways. One of the complications I experienced was severe diarrhea from both my loop ileostomy, and my rectal stump where the new connection would soon be made several months later; this particular complication was continuous, and I began having episodes of nausea, vomiting, loss of appetite,and high fevers. Over the course of 8 weeks, I was hospitalized three times for 5 days each time for partial small bowel obstruction, and was treated w/ IV fluids for the dehydration, both IV anti-nausea and strong pain meds, and a clear liquid diet also IV antibiotics. On my third hospitalization, my GI surgeon ran some endoscopies on me and realized that my original diagnosis of Ulcerative Colitis had been incorrect,and felt that having that j-pouch surgery was a huge mistake and changed my diagnosis to Crohn’s Disease; his recommendation was that I undergo another major abdominal operation to remove the diseased j-pouch and remove the loop ileostomy and to convert that loop ileostomy back into a permanent ileostomy and remove the rectal stump used to create the j-pouch. Unfortunately, my final diagnosis was Crohn’s Disease. Although I was disappointed, I finally accepted this diagnosis, and I have been living with it since I was 18, and my goal is to help and counsel those with UC and CD cope with their diagnosis. If you would ever like to contact me, my name is Carla Head, and I live in the United States but I’d be honored to have friends who also live in other countries worldwide because we are all unified. My e-mail address is: carlahead35@yahoo.com, and I live in the great state of North Carolina,but I’m originally a native of Douglasville, GA, about 20 miles west of downtown Atlanta,Georgia. Anyways, feel free to email me anytime, and my advice is to hang in there, and you have my full support while you undergo this operation. Take Care, and may GOD BLESS YOU, maam. Your international friend, Carla A.Head
Hi Carla
Thanks for getting in touch!
Wow, you have had a hard time….. I feel that I have had things easy by comparison! I had UC for 11 years from when I was 19 until having my sub total colectomy in 2007. I am hoping that because I was ill for so long and had so many tests etc that they have my diagnosis correct!
I am feeling a bit better about things today – bizarrely because my bag leaked at work, which reminded me why I am having this operation in the first place! I know there is nothing I can do now, just grit my teeth and wait till the operation is over, and take what comes
How are you coping with your stoma these days?
All the best
Leah