As with last week, loved him, did not love what he had to say. So here it goes. After reviewing everything from this week, he reiterated what he speculated with us last week -- he doesn't see anyway to fix my gaping sphincter. He speculates, after me asking him how this happened, that my original surgeon either went too deep while stripping the mucous from my rectum or somehow removed too much and hit the internal sphincter. He said it's very rare for this to happen, but that it has happened to all of them (them being even the best of surgeons.) Still doesn't make me feel any better that of the only 5% of people who have complications after J-pouch surgery, I'm in the even smaller percent -- maybe .5-1% -- of those with irreversible sphincter damage. Seriously, really, URGH?
He then very matter of factly, but considerately laid out my options and answered all of my questions. I really am thankful that he took the time to do this and actually called me back the same day I left a message.
Before I present those, let me back up. After the shock and devastation of last week's news, I did the only thing I know how to do, start researching my options with a permanent ostomy and mentally going through things so we can move forward and do what we have to do. And I had found what I hoped would be a reasonable solution/compromise: a Kock pouch/BCIR (you can look them up online -- the BCIR is just an advancement of the Kock pouch.) Anyway, both are continent ostomys, meaning I wouldn't have an external bag collecting my poop, rather I would have a small valve, flush with my skin on the abdomen, that I would catheterize every couple of hours to release the poop. Sounds great, get to keep the stomach clear of poo bags, but also fix my leaky butt problem and get on with life. So we had resolved ourselves that if we didn't get the miracle answer we'd hoped for this week, at least we could do this continent ostomy thing.
Ok, now back to the surgeon's suggestions. His suggestion is to go with the end ileostomy and leave the j-pouch in tact and the butt open. His theory is that I may have just a little mucous leakage each week, but most everything would go out the ostomy bag, I wouldn't have to endure the major surgery of removing the pouch and getting my "Barbie Butt." As you know, I am not thrilled with this, so I asked him about the continent ostomys. He said that they could be an option, but they aren't without their problems. But even if it is a good option he would still suggest getting an end ileostomy (external bag) first to allow my body to heal more before enduring such an invasive and intense surgery. He said I don't really realize to the full extent how sick I am or how compromised my quality of life is, but that I most likely would after a few months/years with the ileostomy.
So now you are probably saying to yourself, ok well that's not so bad. Seems temporary. But hold on, again I ask you NOT to say that. Remember that this is all unknown, we have a lot of major decisions to make that will create a domino affect of decisions that will change our lives forever. It's more surgery, possibly more than one surgery, another ileostomy, etc.
My fears/concerns are as follows:
* I was so sick before my first surgeries that the recovery from them was awful. I can remember waking up in the most horrendous pain ever. I had wound issues, healing issues, the list goes on. I'm very scared of going into surgery and going through all of that again and what it will do to my still very fragile body.
* My first ileostomy was very difficult for many reasons, my stoma was oddly shaped; due to the way my stomach is shaped, finding an appliance that worked was very hard; my skin was constantly irritated and rashy due to the adhesive on the appliances and the constant leakages I had. Having do deal with that and the amount of time/work it took to change the appliance was very frustrating and tiring. It's hard to imagine dealing with that forever or even for a year. I know that the stoma can hopefully be created better, but the issue with my skin sensitivity can not.
* Dealing with the daily life with a bag, having all the supplies with me at all times, getting ready to shower, figuring out what to wear thats cute but covered, finding an appropriate and cute swim suit, always having to take the bag into account for travel, etc. All of these things are not what I want to think about, may sound petty but I just don't.
* My self image. I have always had a pretty healthy self image, of course we all have things we'd want to change. But now dealing with this, looking at it every day, knowing other people will have to look at it every day -- it's a lot to mentally come to terms with.
Ok, but with all of that said, I/we understand and fully believe that me getting better and having a good quality of life is the absolute most important thing. But the hubby and I also agree that quality of life is an equal combo of physical and mental health. So, being the practical people we are, the hubs and I just made an options list. From this list, we will begin to navigate and wade through this next big obstacle and set of huge decisions that will affect us.
Option 1 -- Have surgery to create the end ileostomy, but leave the j-pouch in and the sphincters as they are -- allowing my body to heal and leaving some options open in terms of future surgery.
Option 2 -- Have surgery to create end ileo, remove j-pouch and sew up butt (Barbie Butt.) This would get it all done and eliminate further issues with my j-pouch, but would be a much more major surgery
Option 3 -- Research the continent ostomy (I have two surgeons I want to call who specialize in these procedures in SoCal, which only a few people in the US perform.) If it seems an option, have the continent ostomy created, remove j-pouch and sew up the butt. Again, more major than option 2 and if I'm not healthy enough could diminish the overall procedure's effectiveness. But would get it all done at once and I wouldn't have the external bag.
Option 4 -- Have two surgeries: The first to create an end ileostomy, then let my body get healthy and recharge. Then in 6 months to 2 years or really whenever, have the continent ostomy created using the j-pouch to create the new pouch, close the butt. End of story.
What do I want, well what I want is to not be in this situation. And since that isn't possible, I don't want to have to make such a big decision at all. With so many unknowns and other things that could potentially complicate the decision we make -- like what if I do actually have Crohn's -- but of course, wanting that is not realistic either. We are going to have to make this decision eventually and have faith in the fact that we've made the best decision for me to get back to a great quality of life and so we can go out and start living life to it's fullest.
Here's where my next set of not helpful or productive or even answerable questions comes in. When are we ever going to hear what we want to hear, get good news? When are we going to know what the right choice is? When will we know if this was all worth it? When will I finally feel better and not live everyday as a sick girl? When will this ever end? When will my original surgeon get slapped for making me suffer for so long?
So for now, what we do know is that we do have some options, again it's trying to figure out the best of the worst. And we also have some time to make this decision. I will not be having any surgery until we return from our much needed cruise - a vacation has never been more anticipated than this one! We will spend the next weeks doing more research on all of the procedures. Talking to the two experts on the continent ostomys in SoCal -- we are very lucky we live in a place where we do have prospective experts in close range.
Again, thank you for your support and understanding of all the emotions and feelings we are having and processing. We still have a very long road to get where we deserve to be. We will do what's best for me and our future, but as we know "The Hard thing is Usually the Right Thing." And I sure hate that reality sometimes.