When did you break up with your colon?

Hey all! I'm seriously considering a j-pouch and I haven't started my Remicade yet so I'm not at the end of my options yet. However, I feel like I'm emotionally at that point I've been diagnosed since I was 9, but had problems even before that. I know for some of you the choice wasn't yours it was just medically necessary and you weren't responding to meds anymore. But from stalking about the forum for a bit : ) it seems some of you just made the big decision on your own and went forward with surgery. I was hoping I could find out what made you do it? What was the last straw? Was it missing a birthday? Or a wedding? Or maybe you knew every bathroom in your favorite airport? What was the final straw before you decided to break up with your colon and tell it to move on?

Thanks notsosickly! I will now dive deep into that forum. It didn't even dawn on me that they wouldn't be lurking around here anymore lol yes I am female infertility is my only scare. Well beside the pain too. I just don't know how much longer I can take this. I think going into remission for a long period of time and then getting sick really makes this harder to be honest. I was robbed of my teen years because of this illness i just don't know if I want it to take my twenties, thirties and so on.

I opted for evisceration on March 7, 2001. I was prednisone dependent and the last drug of choice back then was 6MP and it didn't work. Two big things led to my decision; fear of long term steroid use; and loss of quality of life. I missed a family trip to Europe, a backpack trip to the Sierras and countless other things. What sealed the decision was meeting a nurse who had a jpouch. She was radiant with good health, she ran marathons, and she worked 10 hour days. I wanted what she had. Here I am 10 years later and have accomplished so much these past years. A 200 mile hike across England, 100 mile hikes in Ireland and Scotland, and next month I'll be taking on the 138 mile hike through Wales. I've traveled to the Middle East, South America, and Southeast Asia with my jpouch... with no problems, no UC diets, and no meds. Life couldn't be better. I have never regretted my decision but making that decision was one of the hardest things I have ever done.

Sue

Nicki.... I was diagnosed with UC at 12 and at the time I didn't have a choice it was getting to the point where the drs assured my parents either get me on trial drugs or I would get colon cancer so, my parents picked surgery since I was 14 and had no choice. Looking back I would have made the same choice putting the cancer aside I was just sick of not living. I had to know where bathrooms were everywhere I went, so new places meant first let me find the bathrooms...side note its embarrassing on dates (ex. for a second date a guy took my to a concert and instead of relaxing and enjoying myself I spent the first 20 minutes finding the bathrooms and calculating in my head how long it would take me to get there from our seats) and I don't like math. Also, I hate having to pack a extra set of clothes where I go just in case. Part of me got tired of feeling like a lab rat with trying a new combination of drugs which played mind tricks they work then all of a sudden they don't. I got tired of missing out on parties, sleepovers, sport games. I felt like a bad friend, I'd say yes to an invite then suddenly a bad flare came and I couldn't go...the invites then would stop. It stinks because people always say you don't look sick. You just have to decide for yourself do you want to keep trying different drugs and hope you find the right combination that your body will react to or go for the surgery. Keep in mind the surgery isn't easy either, sometimes its done in multiple steps (for me two surgeries) with that comes pain and alot of healing. You want be back and up to your normal routine right away. Also, with the surgery the jpouch makes you digest faster and retain less nutrients so for me it was weird getting used to the new routine and I didn't realize I'd have to take daily vitamins... I was dreaming no meds after surgery. Keep in mind Jpouches don't last forever for everyone some people get too many flare ups and problems too and have to get rid of the jpouch but others live fine with their jpouches. Just keep in mind the jpouch is pot luck and no two people will have the same experience. Personally I got my jpouch at 14 and I turn 27 next month and I was fine until a couple months ago, so 13 years without any major problems made it worth it for me. My best advice, do your research, ask questions and sleep on it before deciding I hope this helps you.

For me it was a couple of things. I've got three kids, now 11, 8 and 4 and for a couple of years there, I did most of my parenting through the bathroom door. Also, my husband would often suggest we take these trips, out of town, to baseball games, etc. and each time he mentioned it my first thought was "I wonder if I'm going to be able to make that one." Plus, I got really sick of being on prednisone off and on and looking like a freak of nature with my moon face. Unfortunately, I have a few pictures from those days and they weren't pretty. Had my j-pouch takedown five months ago and other than a bout of pouchitis that was quickly taken care of with an antibiotic, I'm doing great. I didn't even realize how bad my quality of life was before I got my colon removed. You just get so use to the cramps, the urgency and being tied to the toilet it just become your new normal. I went through all the available meds, including Remicade which worked for about 1 1/2 years and I tried Humira which didn't help me at all. My GI mentioned I could try one more immunosuppressant drug that hadn't been approved for UC but at that point I was just done and figured what was the point. Looking back, I wished I could have had the surgery that day I as diagnosed so I wouldn't have lost out on a lot of life. Good luck.

Chris,

Many of us thought that we would be jpouch failures due to our failure with medications. Fortunately it doesn't work that way!

Sue

Chris don't let the fear of a bag keep yor from surgery. I'm sitting here with one and noone knows. I go dancing, swimming, on cruises, going to disney in a few weeks, hiking, exercise all that stuff and noone has ever noticed it. It hasn't kept me from anything, but uc sure did!

My daughter's last straw was having her 3rd big flare in just over a year and missing another 9 weeks of school. That and the fact that she was pretty much at the end of the medicine possibilities and she was becoming steroid dependent (and even that wasn't working anymore). She was 17 and wanted her life back. She understood the possibility of fertility issues but figured she didn't want to have to worry about flaring during pregnancy or while trying to raise a child. If necessary, adoption would be an option. She has a full scar (her surgeon does not do laproscopic surgery) and doesn't mind it at all. She has never regretted her choice. Three years later she is happy, healthy, and loving life.