Q: In 1984 while a 17-year-old, I had surgery for ulcerative colitis. A j-pouch was created and I had a temporary ileostomy, followed by reconnection six months later so I could go to the toilet normally. In the hospital I was one of the first to have such a surgery which was a 12-hour operation.
Fast forward to 2010. I have all types of symptoms as a result – nausea on a daily basis, abdominal pain, constipation, and lower back pain (all of which seem to be due to the anatomy of my pouch). After many tests and procedures, my surgeon determined that my pouch is overstretched and floppy. He said the only way to relieve the symptoms is surgery – a reconstruction of my pouch.
This is a complicated procedure with a 75% success rate. A failed procedure would affect my quality of life for the rest of my life. (I could be impotent and/or have a permanent bag). He also explained that he is not confident doing the surgery, as he has never done it before and that in order to improve the chances of success, it should be done by a surgeon who has experience with this procedure.
I have seen five surgeons in total and all five have the same diagnosis. If I want to get relief from the symptoms, surgery is my only option. All five have neither encouraged or discouraged the surgical procedure. Each has said that the decision is up to me and have ensured that I am well aware of the risks. So my question is this. My first surgeon made the original diagnosis and when I saw the other four surgeons (of which only one has any experience with the procedure) they all read the first surgeon’s report. I’m concerned their diagnoses are based on what the first one has written.
Is this possible or do you believe their assessment is accurate? I fear their diagnosis is based on the original report. I have not taken any more tests except for a “colonoscopy”. This name is wrong because I don’t have a colon, but it was that type of exam. After the procedure, all say that my pouch looks good (no inflammation).
What are your thoughts? I want to have the surgery, although I am very scared.
A: I am not familiar with the j-pouch procedure other than to say that is is probably a type of surgery that removes the colon (or a portion of it). This is an accepted treatment in severe cases of ulcerative colitis. Beyond that, however, I cannot offer any insight into it. That said, you appear to be about as well informed as your physicians’ surgeons so I doubt I could offer anything you didn’t already know.
That said, it is common for one or more physicians to review the records or operative reports of a prior procedure. This act will clearly define what has transpired, what was found, whether cancer was involved or organs were damaged, and a great deal more. However, I would hope any follow-up surgeon(s) would not be influenced by the recommendations provided. Having said that, you appear extremely well informed and knowledgeable regarding what has transpired and what may be ahead. Without any disrespect intended, I must state that I would feel better if you were under the care of a top notch colo/rectal surgeon with substantial experience in this procedure under his or her belt. Do you have access to a really good medical facility or teaching hospital nearby who might fit the bill? If not, is travel to such a facility possible at this stage? If the answer is yes, you should once again bring any X-ray films and operative reports with you for review.
In the meantime, speak with your current surgeon about what steps you can take to possibly reduce some of your symptoms, such as anti-gas medication, fiber supplements or a laxative for the constipation, over-the-counter or prescription pain relievers, and gentle, stretching exercises which may also help the pain. However, it appears to me that after going through five surgeons, all of whom agree, that your best option is likely corrective surgery. The decision is yours and you are well-informed enough to make it.
For additional information, contact the Ileostomy Surgery Information Center at 9808 Venice Boulevard, Suite 603, Culver City, CA 90232. Telephone 310 204-4565.
