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I found this website several months ago and led me to finally end the misery of trying to live with my J-Pouch. I was diagnosed with UC when I was 16 years old. After ten years of medications (steroids - allergic to Sulfa), I had a total colectomy with ileo-anal anastomosis and temporary ileostomy at Mayo Clinic. I had an ileostomy take-down 9 weeks later. It took a year to recover from this surgery. I finally made it back to work and life was going well. I actually was able to have two children by C-section. After 8-10 years, chronic pouchitis started. Flagyl was my drug of choice until I developed a delayed hypersensitivity reaction. Then Cipro was my best friend! I finally got to the point that I was on Cipro every three months sometimes for 30 days. In 2008, after a biopsy during a routine pouchoscopy, I developed a pouch-vaginal fistula. The last 6 years progressively got worse. I lived on antibiotics and had constant urinary tract infections and pyelonephritis from the fistula. Then in September 2014 my greatest fear came true - I almost died - subacute bacterial endocarditis, bilateral pneumonia, bilateral septic emboli in both lungs - all secondary to sepsis from urinary tract infections. That was when I knew I had to do something. My last visit to Mayo Clinic in 2008, my surgeon told me I could NEVER have surgery and diagnosed me with Crohn's disease in my pouch - even telling me that my original diagnosis of UC was incorrect. I believed this information to be true so never pursued any other advice. After near death, I turned to this forum. I read other people's personal testimonies who live this disease and began to read about pouch excision. I found the name of a surgeon from this forum - Dr. David Beck at Ochsner in New Orleans. I contacted his office and I made the appointment. No referral and no other doctor doing it for me. I immediately got an appointment in December 2014. He told me I did NOT have Crohns, but I had chronic pouchitis and I WAS a candidate for surgery. Music to my ears! In January 2015, I had a pouch excision with total abdominal hysterectomy ( uterus, tubes and ovaries all adhered to pouch). I have a permanent ileostomy. My anus was sewn shut - the best thing that could have ever happened to someone who lived a lifetime in any bathroom I could find! I work everyday and I have more energy and feel better than I have in 30 years. I have gained weight. I have an appetite. I actually walk distances - I never could before. My family and friends cannot believe my miraculous recovery and how "healthy" I am. I get a compliment every day from someone who hasn't seen me since surgery. So... to any and everyone who suffers every day and all night long with 10 - 20 bowel movements a day, or feeling like an elephant is standing on your behind, or feeling like you need to empty your pouch only to have it spasm and not able to empty, or feeling terrible as soon as your eyes open for a new day - please, please, please get the courage to have this surgery and stop the misery. I am so thankful I have this ileostomy and so grateful to God for allowing me to seek out a surgeon who could help me. Dr. Beck and his staff at Ochsner, including his ostomy nurse, Bonnie, are AMAZING! Help yourself - seek a second opinion - don't rest until you restore your health again. I am 56 years old and have been dealing with these issues for 40 years. I plan to live a long and healthy life now. Good luck and God bless you if you live what I have lived. It's finally over!!!! Praise GOD!

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