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 Kim
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. So, without further ado, please allow me to introduce to you my friend Kim West. Many of you may have read her story before on her own website. If not, you can read it here. Kim is a beautiful woman with a beautiful heart. Please consider following her on Instagram: gorgeouscaos.
Q&A with Kim
Q: When were you Diagnosed with IBD?
A: I was diagnosed in 2010.
Q: What medications did you try?
A: Apriso, Prednisone, Humira, Imuran, several different type of daily suppositories both liquid and bullet form (even one containing opium that was hand made) but my allergic reactions to absolutely everything kept me from experimenting with anything else!
Q: How did you get to the point of surgery (for your j-pouch)?
A: I was allergic to every medication! The side effects to medicine were worse than the disease itself and my quality of life was slipping away! Seizures, loss of vision, numerous hospital stays for pancreatitis, severe rashes, hair loss, swollen joints to the point I needed a walker because I couldn’t bend or move them. It was bad.
Q: How many surgeries did you have (for your j-pouch, specifically)?
A: I had 3 steps to create my J-Pouch.
Q: Did you feel like your j-pouch gave you any relief in the beginning?
A: 100 % best decision ever! It gave me my life back! I was off all medication!
Q: What caused your J-pouch to “fail”?
A: My body didn’t produce scar tissue and unfortunately it prolapsed. I then continued to have prolapses. After numerous attempts (every way possible) we decided to go with a permanent bag! I had 8 total prolapses! 5 ileo anal and 3 bladder! Unfortunately when one thing starts to fall other parts do too! I ended up having as many organs removed as we could so they couldn’t fall any longer.
Q: How long did you have your j-pouch before it failed?
A: Depends on how you look at it. My first prolapse happened only 8 short weeks after my final surgery. I underwent 5 separate surgeries to fix these ileo anal prolapses. I had the delorme procedure 2x which is where they go in through the anus and do an accordion like stitch. I had it where they sew my pouch directly to my tailbone 2x. Then I was the first American to ever have these special pins flown in from Singapore and drilled through my sacrum to hold my intestine in place. After that failed we decided it was time to go with the permanent Ostomy. I’d say total time, a year and a half.
Q: How was the j-pouch failure resolved?
A: (See above answer.) I now have a permanent Ostomy bag!
Q: If you had to do it all over again (the j-pouch surgery), would you?
A: Absolutely! I would never EVER want to be on medication or live that way again! Surgery saved my life! Even though my pouch failed my Ostomy bag is still so much better than living that way! I call it my blessing in disguise!
Q: Were you told that surgery would “cure” you?
A: I was told that it would improve my life. I was told that it would remove my diseased colon and my risk of colon cancer. My surgeon was very honest with me about the risks and side effects that could still exist.
Q: In my research, I have found that patients who DO have a rough time with a j-pouch report an improvement in their quality of life since being diagnosed with IBD. Would you say that this is true of your experience?
A: Absolutely. The issues with a J-Pouch are much different than the issues with IBD. For my personal experience less severe and life altering.
Q: What would you say to patients who are considering the j-pouch as an option to treat their IBD?
A: I know it can be scary but it truly is a blessing! After the surgery itself you get this total sense of a renewal on life! It’s like that body that was bruised and broken is restored again! Don’t get me wrong it isn’t an easy road but it is definitely one worth taking!
Q: Is there anything else you think that patients should know about you, your j-pouch or j-pouch failure?
A: That the sense of community and support with fellow J-Pouchers is amazing! We are such a unique network of people but so helpful and so caring! All your questions, concerns no matter how big or how small will be addressed! There will always be someone there for you!
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Thank you again, Kim! If you want to read more about her, please visit her blog Kim’s Kause! Later this week I’ll be posting Shawn’s successful J-Pouch story, so please check back!
