Some Thoughts on Jpouch Surgery

I spoke with someone a number of weeks ago who just recently went in to have Jpouch surgery and during the course of our conversation, it made me realize a lot of things about how different IBD patients are. The way a patient with crohns disease or ulcerative colitis presents is not only very individual but their story is completely different too. The fact that “no IBD patient has the same story” is (I am sure) not something you are reading here for the first time. But, it does tie into what I want to talk about right now.

As many of you know, I did have a Jpouch that failed. It failed miserably in fact. It was awful. I hated that pouch with a passion. It brought me nothing but pain, misery, and caused me to have to fight to the death to have to prove to everyone in my life that I was actually sick (and was not just afraid to eat).

But that isn’t the whole story.

The woman I spoke to prior to her surgery was very hesitant about this particular surgery because she said she has read so many awful things about it. She had told me many months ago in fact that she was thinking of sticking with a permanent ileostomy just to avoid the seemingly inevitable complications of undergoing Jpouch surgery. The problem as I see it is that so many of us understandably get bogged down with these life altering decisions that we can’t help but look at other people’s experiences and stories for reference. And while that is incredible smart and wonderful to want to read up on the prospective procedures or surgical options you may be faced with, seeing bits and pieces of random peoples’ stories can actually do a lot more harm than good.

As our conversation continued and I listened to her fears and answered her questions, I thought I would spend five minutes expanding on my story with my Jpouch. I told her how I had the surgery done in one step by a general pediatric surgeon who had performed 30 of them in his entire career at that time. I also went on to include how I developed a massive wound infection a couple days following the surgery and then proceeded to tell her how I spent five-six months in a tremendous amount of pain, fighting fevers, and would get full from one bite of food all while my doctors tried to convince my parents I developed an eating disorder. Meanwhile, my Jpouch had a tremendous amount of fistulas that were up incredibly high in the pouch that was causing abscesses in my entire pelvic area. And because it took so long for my doctor to realize that there was actually something wrong, my entire body had filled with infection. I almost died.

Point being, if someone was just browsing through a social media support site and saw my comment about how awful my Jpouch was without really knowing the whole story, they would be completely misinformed and get the wrong idea. It is also so important to remember that the people who are on the internet complaining about failed operations are usually the small minority because the ones who have had a successful Jpouch surgery are out living their lives!

I am not pro or against Jpouches. If I had to do it all over again, I would honestly go for it if you all want to know the truth (if I had a definite 100% ulcerative colitis diagnosis).

I wanted to write about this because it did hit home with me because I know I am someone who could very well make a comment in passing on a support site about how my Jpouch failed, have it be misinterpreted because there is no backstory, and I would never ever want that to influence anyone.

So, my advice to anyone considering ANY type of surgery is to yes, listen to other people’s experiences but also (if you have the luxury) talk it out with someone. Don’t just read little comments here and there because it will really just confuse you. You have no idea what else is going on in that person’s life at the time, or with their body, in their mind, or in their heart. There is so much to factor in and like I said in the beginning, EVERYONE is different… especially a patient with inflammatory bowel disease.

Listen to your body and trust your instincts. The rest is honestly a crap shoot (pun sort of intended).

  • TR

    Appreciate this….. Far more negative comments out their regarding j pouches. I am a parent of a pre teen who may undergo this surgery. I am hesitant as they are not sure if this is uc or crohns. Wish this was my decision regarding my life….. Instead of a child’s life!

  • leslie427

    This is a great post. I have UC, and when I was first diagnosed, I came online and was overwhelmed by how negative so much of the available social media was. (not that, of course, UC is any walk in the park!) I realized eventually to take things with more of a grain of salt. All of our experiences are very different, which is one of the more frustrating parts of the disease for me,
    Best wishes to both you and TR above.

  • val0525


    This is a great post. It is so informative!! Everyone is different and needs to know that every case is different. What works for one may be completely different for another. I think each person considering surgery should get a second opinion. This applies to any kind of non-emergency surgery in my opinion. I would have had unneccesary surgery on my hand about 2 years ago had I not gotten a second opinion and today my hand is perfectly fine.

  • rissy26

    Reblogged this on Keeping Things Inside is Bad for My Health and commented:

    Reblog from 2/16/13- I wanted to reblog this post about Jpouch surgery. As many of you know, I have had my fair share of surgeries (this one included) and I will never ever ever give my opinion about whether or not someone should undergo a specific type of surgery unless I am asked directly and know a large portion of that person’s situation. I believe it is crucual to be an educated patient but sometimes hearing so many stories from a wide variety of people can do more harm than good….especially when it comes to surgeries related to inflammatory bowel disease.