I understand your wanting to promote your successes with the j-pouch and I am glad you have had a virtually event free j-pouch. I was in no way trying to down grade the j-pouch surgery or hinting at what I felt tkctwbd should do (that is a decision only she can make). Each person has their own expectations, requirements and issues that need to be factored in when making their decision and it is a big, life changing decision. In my pros/cons I was stating areas that I had concerns which I used information I found to decide if the "risk" was worth the "reward".
I am including a very small list of internet literature that I used to get my information below (I read through tons more but these seem to highlight my areas of concern):
What I took away from these four articles was that "reoccuring" pouchitis is very common (about 63%), the cause of pouchitis (just like UC and Crohns Disease) is unknown, and the symptoms of pouchitis are similar to the symptoms of UC. Having a possibility of going through anything similar to UC was NOT an option for me. Another observation I made was that Pouchitis occurence and symptoms mimics that of diversion colitis (1 in 3 get it). I made the assumption that both, since neither have a "known" cause, may be UC acting up in what is left of the rectum. This assumption brought me to another assumption, that I might be a higher risk candidate for pouchitis since I had very active diversion colitis in my rectal stump prior to having everything removed. Again these are just the assumptions that I used but due to a lack of solid facts on the causes and relations of UC, pouchitis and diversion colitis, I was left having to draw my own conclusions.
Most of your correction are your experiences with the j-pouch (which is great) but may not be the statistical norm. The three corrections I feel I need to address are below:
"POUCHITIS IS MOST OFTEN A ONE-TIME ONLY OCCURANCE, NOT CHRONIC."
The sources that I quoted above unfortunately do not support this claim. Most medical sources agree that only about 32% of all j-pouchers will develop pouchitis in their lifetime or approximately 1 in 3. But, of those, only one in three or 37%, will have just a single episode (information in the first article). That would mean 63% or basically 2/3 will have recurrent flair-ups (47%) or chronic pouchitis (16%). That tells me that if you are in the 1/3 that get it then your chances of having symptoms again are very common.
"MOST ISSUES FOR A JPOUCHER CAN BE HANDLED BY THE JPOUCHER"
The only one I could come up with is the butt burn issue. It doesn't mean this is the only non-office visit a j-poucher deals with but when statistics of office related issues are factored in then j-pouchers seem to require more medical supervision (frequent pouch checks through endoscopy and any pain or problems with the pouch since it is completely internal). The point I was trying to convey is I am one of those people who only goes to doctors when things get out of hand. This could cause more issues with say pouchitis if I wait until it gets out of hand requiring more treatment and might even damage the pouch itself resulting in the pouch failing due to "my" lack of seeking "timely" medical treatment. Less things can get out of hand with an ostomy in my opinion or at least with me being in charge.
"AND COST OF OSTOMY SUPPLIES."
This I did take into consideration also but it would be a Pro on my list (it didn't rate too high though). My insurance covers 100% of all durable supplies but will not cover toliet tissue and butt cream so the ostomy was actually financially more feasible for me (this may not be the case for some). If finances were the main issue to address when making the decision then in theory the j-pouch option might be cheaper as long as the co-pays for any office visits, deductables for procedures being met (annual colonoscopy/endoscopy), the co-pay for any prescriptions needed, and the cost of OTC medicines didn't exceed the out of pocket expense with ostomy suppies. Again that was not a main "make it or break it" point for me but the above listed out of pocket expenses would be a concern if a person were using expenses to make a decision.
I am not trying to get in a debate nor am I trying to sway anyone away from choosing the j-pouch surgery, this information is readily available in a good internet search and like you stated prior, each solution has its own pros and cons and like I stated prior, both options beat the heck out of UC. I was only showing a few of the pros and cons that I had as major factors in my decision. tkctwbd, or anyone else considering surgery, will have to tailor their pros and cons list to fit what matters most in their lives. It is a tough decision, mine came down to could I handle the worst case scenerio for each since both options seemed to be awesome solutions to getting rid of UC.
Total Colectomy with End Ileostomy May 27th, 2008