J-POUCH TAKEDOWN ANNIVERSARY
Next month is my 5 year takedown anniversary for my j-pouch. I have stated many times that the j-pouch has a 94-96% success rate. But you don’t hear many success stories on the internet because most of them are out there living their lives and not boasting about it on the internet. Because you don’t hear a majority of the success stories out there, I feel compelled to keep sharing my own story of life with a j-pouch.
SUCCESS & FAILURE STORIES
I have given a lot of thought to how I would address this year’s takedown anniversary. I thought it might be helpful for you to hear stories of other successful j-pouchers that you might be encouraged should you ever find yourself facing the prospect of surgery. Then I thought I’d be doing you a disservice if I only mentioned the successful stories. That’s when I thought it might be good to shed light on not only the good stories, but the not-so-good stories. You also need to hear about the j-pouch failure stories.
INTRODUCING RASHEED
Over the next few weeks I’ll be sharing several stories of those who have a successful j-pouch as well as stories of those who have lived with j-pouch failure. My friend, Rasheed Clarke. Rasheed was diagnosed with ulcerative colitis in 2008. He authored a book of short stories about living with inflammatory bowel disease, titled Three Tablets Twice Daily, in 2011. Due to the severity of the disease, he had his colon removed in 2013, and has lived with a j-pouch since 2014. He currently works as a marketing coordinator, and is an enthusiast of running, cycling, sports design, and hand-held foods.
Q&A WITH RASHEED
Q: When were you Diagnosed with IBD?
A: I was diagnosed with ulcerative colitis in 2008, but I started having symptoms back in 2007.
Q: What medications did you try?
A: I started on oral 5-ASAs, and that worked quite well for about two years. But the disease became harder to control after that. I’ve been on and off prednisone to control flare-ups, I was on azathioprine for a while but it had little effect. I was also on Remicade for a brief time. I worked for about two months before losing efficacy. I also tried some naturopathic remedies along the way which did nothing.
Q: How did you get to the point of surgery?
A: As noted in the last question, I went through a number of medications, and I tried some special diets as well that didn’t work for me. When Remicade stopped working, I was just fed up. Fed up with having to go from one medication to another just to have it fail. There were other medications on the table, but I didn’t have much hope in them. The surgery felt like a definitive step I could take to better control the disease.
Q: How many surgeries did you have?
A: I had my j-pouch procedure in two surgeries. The first in May 2013, the second in February 2014.
Q: When did you start feeling like you had your life back?
A: I’d say it was in May of 2014. I had to adjust to life with the pelvic pouch and I did have some initial problems with frequency, discomfort, and butt burn. But once I learned how to manage the pouch I started feeling better. It was in May 2014 that I ran for the first time since my first surgery, and that made me feel like I was back on track. I was really out of shape, but I was able to get outside and move and I felt like myself again.
Q: Are you happy with your J-Pouch?
A: Very. It’s made life much more ‘normal’. Aside from the extra bathroom trips (6-7 a day), I can go to work, I can exercise, I can travel, and I generally feel well. It’s not as though my life and my body have been restored to what they were before I started having my UC symptoms, but it’s close, and that’s all I could really ask for. Having the pouch, and having it function quite well at this point, gives me something to be grateful for every day.
Q: If you had to do it all over again, would you?
A: Absolutely.
Q: Were you told that surgery would “cure” you?
A: My first GI once said “I’m offering a cure” when speaking of the surgery. I knew it wasn’t a cure, but I didn’t raise a fuss when he said it. Sometimes I wish I did.
Q: Do you feel like you have a better quality of life living without your sick colon?
A: I do, but it’s important to put that into context. I have a better quality of life than when I had my problems with UC, but not as good as the time before I started having my UC symptoms.
Q: Is there anything else you’d like other patients to know about your experience with UC and/or a j-pouch?
A: If someone’s considering the surgery, I’d encourage him/her to research the procedure as much as possible, as well as existing medications that he/she would have access to. Knowing the full breadth of your options is important, and so is having realistic expectations going into treatment, whether that’s surgery or medication.
