I had a colonoscopy the week of Thanksgiving just to check on how my UC is doing. I hadn't had one since my diagnosis in 1999. Patients with UC typically get colonoscopies 8 years after diagnosis, and then every other year after that, so I was a little past due. The colonoscopy went fine (better than I remember my first one going) and the Doctor mentioned some biopsies were taken. I received the pathology report in the mail the day I left for Chicago (for the Midwest Clinic). It said I had some inflammation and "dysplasia and atypical cells". This caught my attention, but I quickly dismissed it in order to leave in time to catch my (delayed) flight.
Today I went to my Doctor expecting a very routine check-up/blood work. My UC has always been under control so I usually approach doctor's appointments very casually and have had very few surprises over the years. Recently, I was also diagnosed with PSC (Primary Sclerosing Cholangitis) which is an inflammation of the bile ducts in my liver. I was reassured that through blood work and careful surveillance, this would mostly be a mild inconvenience (at least for now). I had come prepared with some questions about my diet and how it would relate to the PSC when my Dr. dropped a pretty big bomb.
Apparently, dysplasia in the colon is not good. Because I have UC, my chances of getting colon cancer are outrageous compared to people without UC/Crohn's (The fact that I also have PSC raises this risk even more). The biopsy was deemed "indefinite for dysplasia" by several pathologists, which means that they cannot definitively say it is dysplasia because of inflammation (but it probably is). This dysplasia is essentially the very beginning of colon cancer. So, my doctor mentioned two options. Option one is a colonoscopy every 3 months to keep checking for signs of colon cancer (polyps, more dysplasia) but this is not very reasonable because of the amount of time and prep involved with the colonoscopies. If I take this route, chances are still very good that I will develop the cancer later.
Option two is a total colectomy with a j-pouch. When my doctor said this, I was shocked, terrified, and probably white as a ghost. Having done a little research about the PSC, I found out that a lot of people end up having this procedure. Most of the people have very active or hard to control UC, so I assumed I would most likely never have to experience it myself. Now, my doctor is suggesting I have the surgery next summer so that I don't eventually develop colon cancer.
The procedure is a fairly large procedure that involves 2 surgeries, each of which will keep me in the hospital for around a week (more or less depending on how smooth recovery is) plus several weeks or months of recovery at home. The first procedure would be to remove my entire colon and create an ileostomy and a "J-Pouch." The J-Pouch is essentially an internal pouch created from part of my small intestines where waste would be stored before I use the restroom. During the 2 months, or so, following this surgery, my waste would drain directly from my small intestine through an ileostomy and into an external pouch. This would allow time for the internal pouch to heal without having to perform it's intended function. The second surgery would remove the ileostomy and connect my small intestine to the healed J-Pouch. Following the surgeries, I would be able to live a very normal life, with the exception of using the bathroom a little more frequently. Dehydration is also more likely since the function of your colon is primarily to absorb liquid.
I was very surprised to hear that the Doctor suggested this procedure and am still not quite sure what to think about it. Without a colon, I cannot get colon cancer and my UC will be cured. This means no more medication (6 EXPENSIVE pills every day), no more colonoscopies (woohoo!), and maybe some more energy. So, maybe there is a positive side to all of this?
I have been referred to two other doctors to make sure that this procedure is absolutely necessary. One is a specialist within the same practice who has the most experience working with patients like me. The other is a possible surgeon to discuss the procedure if deemed necessary. I am honestly hoping for a slightly more optimistic opinion and maybe another colonoscopy (?!) just to make sure. I would hate to have this procedure if it isn't totally necessary.
Mom did not take the news very well. I accidentally caught her at work thinking she was in the car on the way home (oops). She of course started crying and almost sounded angry, but I know she is just very concerned. She was just as surprised as the doctor and I were. Dad seemed very interested and helped point out the positive side of having the procedure. The optimism was much needed after I had spent most of my day trying to keep my mind off of the news I received. I don't plan to tell many others until I know for sure the surgery is happening. I will probably tell my co-worker, Eric since I may miss some school depending on the timing of surgeries/recovery (trying to figure that all out will be a mess with school ending, summer band functions, band camp, and school starting!).
For now, I guess I have to focus on my life and move on. I've got a lot of stuff to think about over the next few months, but I have to concentrate on school and making sure that I can commit completely to the students without being distracted. It might be a rough 2012 for me, but it won't be "the end of the world"....you see what I did there? :)
No comments:
Post a Comment