Seeing a J pouch in my future

I have had my pouch for 16 years.  I have never had an accident while I have been awake. I work out, hike, camp, worked full time, have two kids. I eat spicy foods with no issues. 

 

I didnt have have the option to be scared. It wasn't a choice. I had an acute attack of UC and it was either death or surgery. 

 

Things arent perfect. I can't eat raw citrus. A slice or two is ok but a whole orange will give me butt burn. I avoid mushrooms but still occasional eat them but as careful to chew chew chew. I use to not tolerate cabbage but started eating again a few years ago. Too much chocolate also causes me some issues. BUT this are all very minor interruptions. Just part of regular life now. 

See that is some hope.  I have the waiting time to be scared -- I can't imagine emergent surgery is such an easy thing.  Thank you for sharing.  

 

I guess I was thinking immediate post op lifting restrictions-how life works in the short term and long term.  What kind of things I need in place -- the smallest is 23lb...those things.

 

I liken this a lot to having children.  You can read all the books you want, plan, ponder and the like but until your life shifts you can't really understand it.  

 

Annikki - it sounds like you have been doing so well.  If I may ask, how old were you went you got the surgeries?  It seems like the earlier the better but it seems to be what I am reading here.

 

Thank you.

Most of us on this site are here because we have problems.  With some luck, some time and a good surgeon your life can be better without the UC (and dysplasia). Do research on your surgeon. If possible at least get a consult at Cleveland Clinic. The high pressure job and spicy foods may have to take a back seat for a while. This isn't something you can do one week and go back to work the next.

My boys were 6 and 8 when I had my final flare that sent me to surgery. I had over 20 years of mostly remission and I fought for six months to avoid surgery. Like you, I feared the loss of my life as I knew it. I wanted to control when I had my colectomy. I did not work crazy long hours, but I was very active in my kids' school and prided myself on running a tight ship at home. We liked to camp and go on long car trips. I feared being a bowel cripple, never able to leave my home.

 

The hardest thing for me was leaning on friends and family to help out while I was in the hospital recovering. My boys were great and I hid nothing from them. I showed them my incision and they were gentle with me. I did not have accidents, and I was able to plan  normal activities within a month. Granted, I also had some complications that landed me in the hospital a few time in the first 6 weeks.

 

But, that was nearly 20 years ago.  Yeah, my life is not exactly the same as it was. But, it is good enough. I travel, camp, hike, swim, love and laugh. I've developed other health challenges over the years too, but that is life.

 

Bottom line, it is OK to be fearful of an altered future, but don't let it paralyze you from doing what is necessary.

 

Jan

I had low grade dysplasia in my colon (no mass) before the colectomy and J Pouch surgery in 1992.  By the time they removed my colon, my surgeon said it was dissolving in his hands from all of the inflammation, and the surgery, although elective, could not have waited any longer.

 

I have had a J Pouch for nearly 23 years now.  Although the surgery and immediate aftermath was rough and I have battled pouchitis for almost 20 years (mostly successfully), I have no regrets and would do it all over again in a heartbeat.  The pouchitis is not as severe and is much more manageable than the UC, so I have effectively "traded up" in inflammatory bowel diseases.  I have worked full time as a trial attorney since 1992 and never missed any significant time from work nor have I been impeded much in performing my job.  With the J Pouch you go to the bathroom a few times more a day and the urgency issues that existed with UC are no longer in play.  Most importantly I am healthier now than with the UC.  

 

I think the DALM is a sign that your colon has to come out. Good luck.

Yes, DALM is an indication for my proctocolectomy.  There is a part that wants to get this show on the road -- but I am still scared.  I know it is the right thing and I am not going to put it off.  I just don't know how my family and house is going to function.  Much less, how I am going to function.  I am glad I found you all.

You really will need help for your house and family to function, both while you are in the hospital and when you are discharged. *You* will function just fine, in all likelihood, but you're going to have to take care of yourself for a while, and enable some good people in your life to return the favors they'll likely be glad to repay. Good luck! 

I had a two step surgery. Between the first step (colectomy, J pouch creation, loop ileostomy) was the harder recovery, but I was up and being pretty normal about a month after discharge, albeit not at full speed. By takedown, 4 months later, I was doing fine/being normal with my loop ileostomy.

After takedown, yes, there was a bit of adjustment with the number of stools and working that all out, but I had that done in May, and was in nursing school full time and with a part time job by September.

A few things I had in my favor: I was 19 and did not have kids (so body hadn't been through anything but 9 years of ulcerative colitis, which was pan colitis by the end). Surgeon said my colon was "very diseased" and "friable" when he took it out, so it was totally time. Youthfulness is helpful in recovery for many reasons, but patients of many ages do well after surgery.

I also never needed to slow my gut or thicken my stools. You'll be surprised to know that occasionally some of us can be *too* thick. Happens to me periodically. Anyway, I believe this also helped me not have accidents quite quickly. Didn't have daytime issues, just some in the beginning at night.

I've rarely suffered pouchitis, and when I did, it was likely related to narrowing of my outlet and incomplete evacuation. When things are flowing, I'm good.

I had many many great years, just recently developed some other issues, but honestly my pouch function remains pretty good *most* of the time. There are blips of stuff, and when they're happening, I'm unhappy/miserable, but usually with patience I get through it.

My advice also includes to Kegel like a maniac. ��

I was 24 when had my pouch surgery.

 

It was a rough first few weeks after...had a massive infection in my incision, 10 days in the hospital and then a nurse visiting for a week to pack my wound BUT then my recovery was quicker and I was out doing stuff.  Three months after I moved to a city 8 hours away from my parents and started my life again.

I hired a cleaning service for my house.  It was well worth it for me not to have to worry about it.

 

You should be able to drive as soon as you are off of the narcotic pain relievers; I was off of mine within 2 weeks of being released. 

 

The hospital arranged for a home nurse to visit me every day and to help me change my appliance and to check on my condition.  They were a huge help to me.

 

Since you are having surgery due to DALM then you might be able to have a 1 or 2 step surgery.  I needed a 3 step because of my UC flare and the medications. 

 

I am fortunate because I am able to sleep through the night and not have to empty my pouch.  I usually need to empty it 3-5 times a day and it is usually pretty quick.

 

You should be able to do most things within about 2 weeks of being discharged but you will be limited to lifting items of about 15lbs or less for about 2-3 months. 

Well I have a date next week...happy thoughts and prayers this way.  Will keep you guys updated.