Wow...don't even know where to start. I'm a female and was diagnosed with Crohns Disease in 1994. I have tried many meds and therapies suchbas Remicade for 7 years and Humira. In 2008, things turned for the worse. I developed many strictures throughout my large intestine and had to have a temporary ileostomy. The colorectal surgeon was able to save 6 inches of my large intestine and rectum at the time. Several months passed and reversal took place. I did okay but I was working and overlooked things that were really going on. I had leakage from time to time and sometimes I had accidents. I just continued to focus on my work. I stayed tired all the time and developed muscular pain as well as tension headaches and migraines. Then finally one night while taking a bath a noticed a large not near my rectum and vagina. I just thought it was a "female problem" and would go away...it didn't. Then I noticed another small one close by. So I decided to make an appointment with my gynocologist. After one glance, he took my hand and stated that I needed to get in touch with my Cleveland Clinic doctors ASAP that I had fistulas. I did as I was told. When I finally arrived for my appointments and was examined, they discovered 3 visual fistulas but had to do further testing because they were not draining so they were afraid as to where they were channeling...possibly other organs or maybe the vagina. I was so worried. A colonoscopy was performed and several things were observed. The fistulas were not channeling at the time so that was good news but one was very close to the vagina wall. My rectum was in very bad shape as well as the remaining large intestine (6inches) that I had left. They explained it as friable. That is why I was leaking and losing control and having accidents. So the first procedure was seton placements to drain the 3 fistulas. I had the setons for about 4 months.. It was very annoying. The next thing the colorectal surgeon suggested was removing my rectum and making a permanent ileostomy. This was a hard decision!!! I came home and researched other options like the JPouch, BCIR,KPouch...but I ended up being so sick that I went ahead and allowed the permanent ileostomy with removal of rectum. Now I am having problems with stoma, appliances fitting, staying on, etc...they are wanting to repair but I am thinking about the KPouch or BCIR. Am I a candidate since I don't have a rectum? I only have my small intestine...thats it. Someone PLEASE REPLY!! smpioch@gmail.com
I am sorry to hear about the medical problems you are having. The presence of Crohn’s rules out a K pouch or BCIR for many, but not for everyone with it. A qualified surgeon would need to make that determination. As regards your key question, it is not necessary to have a rectum in order to get a K pouch or BCIR. Many people who have had these procedures converted from an end ileostomy to a K pouch or BCIR for the kind of problems you are experiencing or for other quality of life issues. I have a BCIR that replaced a jpouch that had to be removed because of high grade dysplasia in the anal canal. The surgery went well and I made a full recovery and everything is working fine. Dr. Ernest Rehnke at Palms of Pasadena Hospital in Florida did my surgery and I received the best of care and follow-up.
I recommend that you contact Susan Kay at Palms (800-336-0789) and ask her to send you their informational packet, which includes a BCIR patient contact list (many of whom converted from an ileostomy). In the meantime, a WOCN might be able to help with your immediate ostomy problems. Please feel free to send me a PM, and I hope you get a good resolution to your problem.
Bill
I recommend that you contact Susan Kay at Palms (800-336-0789) and ask her to send you their informational packet, which includes a BCIR patient contact list (many of whom converted from an ileostomy). In the meantime, a WOCN might be able to help with your immediate ostomy problems. Please feel free to send me a PM, and I hope you get a good resolution to your problem.
Bill