As you can tell from the title, believe it or not, after having three major surgeries since June 2012, I need yet another one. From years of horrible, agonizing pouchitis, I had my J pouch and rectum removed and a K pouch created in June 19th, 2012, thinking it would solve all my problems and I'd go on my merry way, but as we all know, that was not going to be the case. The nipple valve leaked constantly, and it was a battle just trying to get the catheter to go in so I could empty the pouch. So, although still recovering from that surgery (out of over a dozen surgeries, GI or otherwise, it was, by far, the longest, at 10.5 hours, and the most agonizing I'd ever encountered, took me months to start coming around) I thought it wise to get it fixed ASAP.
My surgeon, Dr Zane Cohen, agreed to repair it, and on April 4th, 2013, I went under the knife yet again. I went into it expecting to awake with a fully functional nipple valve, but instead, I awoke, looked down and saw a permenant end Ileostomy, the one thing I was desperately trying to avoid getting in the first place. You see, way back in the early 90's, after my toxic megacolon, I had a temporary loop ileostomy, until I had the first step of a three step j pouch. I absolutely hated it with a passion. It would constantly leak, my stoma and peristomal area covered in painful, bleeding ulcers, not to mention the mental aspect of having my well toned body now deformed (I use to be in really good shape in my early 20's, a 100 years ago!). I was so happy the day they removed it and had my final takedown, little did I know.....
So, back to this decade, I see this new ileostomy, and almost instantly went into a deep depression. I managed to hold things together for about 24 hours until I finally lost it and cried uncontrollably for three days. Never had I been so depressed, up until that point at least. BUT, Dr Cohen insisted my nipple valve was badly damaged and beyond repair. He had decided an ileostomy would be of much greater benefit to me then a disfunctional K pouch, but at first, I couldn't see that, all I saw was a bag that would ruin my life. Of course, with the passage of time, I grew to accept it, and, after learning of the new supplies now available, it's not so bad. I've now adapted my wardrobe and lifestyle to work around it and aside from the occasional leak, I've gotten use to it (because I have no choice).
Then, shortly afterwards, I began with constant nausea, vomiting, and constant pain, so I go back to Dr Cohen, and discover that, again, I needed another surgery to repair a few serosal tears and remove several adhesions that had caused my bowel to kink, causing constant obstructions. Under protest, on November 22nd last year, I go under the knife again, praying it was the last for a very long while, and for a few months, I thought I was all over, but then....
Just as I was planning my return to work after being on disability for two years, the exact same symptoms start all over again. About two months ago,mi was getting ready for bed, and within seconds, was vomiting all over the bedroom floor. Dr Cohen did day the adhesions could grow back, but I never imagined it would happen so fast. The only difference this time is it feels higher up in my GI tract, what's left of it (have only 13 feet of small bowel left, everything else is gone). So, I'm booked to see my surgeon on June 2nd (that the first available appointment) to discuss my next surgery (AGHHHH!).
With each previous surgery I would always get through it knowing it would be my last, but given my recent history, I don't have the luxury of assuming that anymore,many it's really beginning to bring me down. How much more can I take? Seriously, what did I do to deserve this? I find myself sinking into a deep depression. It's like being locked in a dark room, screaming at the top of my lungs, with no one to hear me. I never thought it would get this bad, and admittedly, I'm having trouble coping. I try my best to stay positive and smile, so those I love don't worry too much, but the truth is, beneath my smile, lies a frown, and a dark hole I can't seem to crawl out of. All I can do is pray it actually works this time. I miss, deeply, my old life, and life's simple pleasures, things, in the past, I would simply take for granted, but no more. I can't trust my own body, and am stuck in limbo. I can't make any plans for the future because I don't know if I'll be able to fulfill them, it's extremely frustrating, and is enough to bring me to tears, almost on a daily basis. Combine all that with life's stresses (watching my elderly parents fall apart, and having to care for them, something I'm thankful I'm still able to do, I owe them everything) and I just want to crawl under a rock and die.
I'm sorry to dump all this on you, but you're the only group who knows how it feels, I only pray none of you ever have things this bad. Thanks for letting me vent, and thanks for being there, you're all my saviour,
Eric
