As my ever so confused immune system is attacking my colon and rectum, those two parts need to be removed. But then what? So I have two options which my wife and I are disagreeing upon. (I wonder if I am trying to decide between two good options and getting bogged down in the details)
1) The Appliance: Get an ileostomy (external bag) where waste trickles continually, non stop. Upside: Simpler, if something goes wrong, it can possibly be fixed easier without a hospital visit than option #2. No nighttime incontinence (as with option #2) and my days should be more predictable than option #2. Perhaps dietary constraints are less as well. But it's not exactly pretty to have a new (incontinent) dingy hanging off my abdomen. Nor the risk of hernia at the point of the stoma. Other downside is that if I roll on it or try to do anything acrobatic I'm afraid it will leak all over me. Requires 1 surgery. Maybe could save my life if I am lost at sea and need something inflatable to buoy me up.
2) The J-Pouch: Get an internal bag constructed from my small intestine which connects to the anal sphincter and after say 6 months of "training" *may* allow from 6-8 BMs per day and no external bag needed (eventually). Usually requires 2-3 surgeries.
Upside: No external bag, no skin problems where the bag adheres to the body. Downside: Crohn's can develop in the pouch as can minor issues such as pouchitis (which may eventually necessitate removal of the bag). Sepsis may occur if the pouch ends up leaking.
So.. My Wife and I rarely disagree but I am loathe to try the J-Pouch. Why go through the risk of Crohn's developing (!), Pouchitis, Cuffitis, Sepsis, etc? As a J-pouch is known to be great when its great and terrible when it's terrible and no way to know which camp you fall in, I'm tempted to just go straight for option #1 and close up the chance to get option #2. This way, kind of like Cortes burning his ships so his soldiers had no choice but to fight the stronger army they faced or face death... I have no option but to cope and make it work. And establish a normal that I can count on, without fear of ups and downs (like what UC provided)
There is a way to leave the option for a J-Pouch using option #1, by leaving my rectum in place for a year or two till I make a decision... but that's where most of my inflammation lives, so I may be stuck with pain for a while (10% chance says my WOC nurse) and still need another major surgery for whatever the end decision is. In other words, having the option for a J-Pouch necessitates a second major surgery regardless of whether you finally end up doing option #1 or #2. And I don't like multiple surgeries... I want to be done with it all. Anyways I call this option #1.5.
One thing that may be pertinent in choosing is this: If the surgery is successful and I am lucky enough to get back good physical health, I would love to go mountain biking, rock climbing and doing some weight lifting one day (nothing extreme though of course). But I can't see how either option #1 or #2 will really affect my lifestyle in that case. And the look of the ileostomy (bag) may not be pretty but it doesn't really bother me much (too easy to say right now).
I know this is a very personal decision but before I pull the "It's my body, I'm making the final call on this" trump card, and go for option #1, if you have any comments do tell. I'm thinking it's best just to make a decision, close down the site of inflammation and move on as best as possible without further risk, further headaches, further surgeries. (comments can be added below). Am I thinking this through enough or is there something I've missed?
I'm not sure where you are or what your surgeon recommends. However, if you can convince your surgeon that a 3-step procedure is best, you can get a better appreciation of what living with a perm-ileostomy would mean, before making the final call.
ReplyDeleteI personally was leaning towards the perm-ileostomy, but my surgeon convinced me that "I was too young" for that (I'm 38).
I chose to go with the Jpouch and so far very happy that I did.
3-step means more surgeries, but the benefits are:
1) removal of your colon and immediate relief from your UC issues
2) you get to use your ileostomy for a few months before step-2
I could not possibly recommend my surgeon highly enough in words, so if you are considering surgery, I would highly suggest you find the best damn surgical team you can. University of Chicago is 6th in the nation (world??) in treating UC.
-icedogchi on jpouch.org
My surgeon said that leaving your rectum for more than a year runs the risk of developing a very aggressive form of cancer that is extremely difficult to detect. The amount of your rectum that is left is not much. You'll have discharge (mainly mucous for me) but nothing like UC.
ReplyDeleteCrohns does not develop b/c you have a JPouch. Crohns is a condition you would have before that. Should you be diagnosed with Crohns, you are not a candidate for a JPouch.
(Crohns is sometimes misdiagnosed as UC)
As for the ileostomy bag, you would be very hard pressed to break the seal. Hollister products are amazing. The only way I was successful in breaking the seal was having rootbeer before bed. Damn thing blew off in the middle of the night b/c of the gas pressure. Very messy, but damn funny!
I think what you've missed is that JPouch success rate is very high and the quality of life is very good. Pouchitis, etc may come into play, but those are treatable conditions.
My advice, don't let the fear of multiple surgeries force your hand. I highly recommend the 3-step procedure.
Granted, I'm just 5 weeks post takedown, but so far so good!
-icedogchi on jpouch.org (yeah, double post, sorry)
Here's my blog link, where you can read about my pouch surgery, etc: http://arvis.us/blog/