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).