Ostomy Reversal Anniversary - 20 Years

It's hard to believe it, but this is my 20th anniversary of my ostomy reversal!

I had my colon removed at age 9 due to Familial Adenomatous Polyposis. I was expected to have my ostomy reversed into a Jpouch a few months later. However, this is far from what would happen.

I suffered complications from my colon removal resulting in having an ileostomy for 6 years before it would be reversed. My small intestine wrapped around itself and my surrounding organs resulting in my Jpouch dying from lack of blood supply. I required emergency surgery to remove the dead small intestine and move my stoma from my left side to my right side. I would have 5 surgeries that year including one to start a Straight Pull Thru. However, my surgeon refused to complete the Straight Pull Thru reversal. 

I experienced a very difficult time trying to adjust to my ostomy. I hated myself, my body, and those around me who I felt I could blame my ostomy on - such as my parents and medical providers. It wasn't until high school when I entered counseling that I was able to start processing the medical trauma I had experienced and learn to cope with my PTSD, depression, and anger. It would still take another decade at least before I felt truly comfortable in my own skin and began to appreciate my body.

My 2 Stoma Scars and
7 vertical Surgery Scars

Six years after my first surgery, when I was in high school I found a surgeon willing to attempt
completing the Straight Pull Thru. I had longed for an ostomy reversal every day of those 6 years. It wasn't even considered an option until I told my GI specialist that I had been having the urge to have bowel movements in spite of having an ostomy. She explained that this urge was caused by mucus in my small intestine but because I had the urge to excrete it and was able to do so, perhaps a reversal would be possible after all.

Due to my Jpouch dying requiring part of my small intestine to be removed, I didn't have enough small intestine left to create another Jpouch. I would have to create my own reservoir in my small intestine. This was done over the span of a year of performing Kegel exercises while an inflated Foley catheter was inserted into my anal canal. This exercise would create my own reservoir and strengthen my sphincter muscles that hadn't truly been used since I was age 9. I had my heart set on a reversal so I faithfully completed these daily exercises.

My GI specialist and surgeon warned me that while the reversal would be attempted, there was no way to know if it would be successful or not. I may go through surgery only to wake up with my ileostomy being permanent. I didn't care though, I had to try for the reversal.

My parents agreed to give me a thumbs up or down sign as soon as I opened my eyes from the attempted reversal surgery so that I wouldn't have to wait to know how the surgery went. I refuse to talk when I have a NG tube inserted so I wouldn't be able to ask them the outcome. Fortunately, my parents gave me the thumbs up sign and I was able to relax and drift back into my medication induced sleep. 

Due to having 6 surgeries by this point, my adhesions started to create a stricture around my small intestine resulting in surgery the following year to remove adhesions. I wasn't sure if this 7th surgery would affect my ability to maintain my reversal or not. I fear of any future surgeries as well due to this risk. 

This was my second surgery to remove adhesions and each new surgery creates more adhesions. I now have chronic pain, nausea, and increased risk of intestinal blockages due to my adhesions. I fear that I will require another surgery in the future to once again remove adhesions and place my reversal in risk. Fortunately, my symptoms caused by my adhesions are not severe enough to require another surgery at this time. However, I continue to develop polyps in my duodenum that may require the Whipple procedure at some point.

My Scars In All Their Glory

A Straight Pull Thru and the extended length of time I had an ostomy both have affected my ostomy reversal in general. I have Short Bowel Syndrome resulting in 20+ bowel movements a day. I also often experience urgency with bowel movements that is worsened by not having a rectum and the amount of time my sphincter muscles weren't regularly used while I had an ostomy. In spite of these obstacles, I manage to function well most days and I'm able to participate in the majority of activities of my choice with the aid of anti-diarrhea medications when necessary. Due to my Short Bowel Syndrome, I do have flare ups causing me to require the restroom every minute or so and these flares can last for hours at a time even with anti-diarrhea medication. 

I try not to dwell on the possibilities of the future that may or may not occur and instead focus on enjoying the present status of my health. I remain amazed that my Straight Pull Thru has managed so well for me to reach 20 years. I hope for many more years with my reversal.