Posted 9/8/2015 2:25 PM (GMT 0)
Hi zulalularen,
I had been battling UC for about 5 years up until my total proctocolectomy with permanent ileostomy surgery last month (8/17). My UC was mostly an annoyance for the first 3 1/2 years or so...then it turned mean and nasty. Mesalamines became ineffective and I started to progress quickly through the stronger meds. Six months of imuran yielded no improvement. I failed Humira. I failed Remicade.
The progression through the biologics happened over 6 months. In the last 4 1/2 of those months I became home bound and lost 40 pounds. My GI wanted to refer me to another GI for a run of Cimzia but I turned him down. After all the research I had done here and knowing how bad I felt I had lost faith that any biologic was going to work at this point. Plus, with the rapid weight loss, I had lost much strength and felt that if I did try another biologic and it didn't work I might find myself in a spot where I was then too weak to have the complete surgery that I was now starting to desire.
Through my research here at Healingwell I had read about folks who wound up in emergency surgery for an ileostomy but were in such a weakened state that the surgeon felt it would be too risky to also remove the rectum, anus, etc., and just left a rectal stump. Further research told of the risk and problems that such a stump might cause. On that note, when talking to the surgeon he said that some folks ask about having partial colectomies to take care of just what seemed diseased at that point but strongly advised against it. UC is a progressive disease that works it's way from rectum to ileum and would eventually attack the remaining colon, he said. Same with a rectal stump (and sometimes the leftover workings required of the j-pouch in the rectum), there's a chance for UC to come back and/or cancer to pop up.
On an interesting side note, I met with my GI last week for the last time. I went to see him to basically find out if I needed to see him anymore and he said only if I felt I needed to or some other issue popped up. I gave him a copy of the pathology report of my sick old colon and we chatted about the course of treatment I had. He wanted to make sure that I had everything cut out (rectum, anus, all of it) as any left over stump might result in cancer. He explained that the course of treatment he had me on worked for most folks. He said that for many Remicade is almost like a light switch...meaning that some see almost instant and long term relief. Alas, for me it wasn't to be.
I came to grips with the idea of surgery while trying the biologics. For me, once I started remicade, I was experiencing about a week of illness after each infusion. On my last infusion I'm fairly convinced I had serum sickness as when the initial flu-like symptoms that can follow each infusion started to fade after a week I started to feel much worse and even sought out antibiotics for what I feared was a bacterial infection or tear in the colon. It was awful. I was done with biologics at that point. It wasn't worth it for me. I decided that if I was going feel bad for 3-4 weeks out of every 8 that it just wasn't worth it. That was not the quality of life I wanted.
Reading up on my surgical options led me to feel that a permanent ileostomy and not a j-pouch was the best solution for me. I'm 43, married, and have a 5 year old. I didn't want to drag out things to extra surgeries and deal with the potential issues that might or might not have occurred with a j-pouch. I just wanted the problem to be fixed as quickly as possible and hopefully not have to deal with UC stuff anymore. Had I been an unmarried 23-year-old my choice probably would have been different. But as it is now an ileostomy bag matches my upper partial denture nicely and will probably go well with a new hip or knee I'll probably need in 20 years. I'm practically bionic.
I'm very pleased with my surgery even though there are little bitty things I could complain about. I can finally eat! As far as the little complaints, I'll list them here as warnings but they don't bother me too much really and looking back wouldn't have prevented me from having the surgery.
Complaint 1: I didn't seek out a surgeon specialist but on the advice of a WOC friend went to a general surgeon who had worked on her dad. He did an okay job but I wish I had a more prominent stoma. I had even asked him to leave me an 1" to 1 1/2" after the inflammation went away but it's nearly flush at this point. No big deal as I know I will find the right appliance to deal with it but I'm still searching. It's only been a few weeks, though, and the sore spots are frustrating. I'll figure it out though.
Complaint 2: This probably isn't a valid complaint but an annoyance that could probably happen with any surgery involving a multiple-day stay in the hospital. I had issues with the foley catheter. They took it out twice in the hospital but I could never get things flowing, so upon discharge I was sent home with it for a week. It was later taken out and things are flowing but I'm not emptying my bladder completely. My GI said to give it a month to get back to normal but it's annoying and has me worried about ghosts that probably aren't there like prostate issues, etc. If it doesn't correct itself I'll go see a urologist but for now it's at its worst an annoyance and doesn't particularly overshadow the relief I've found through the surgery.
Complaint 3: The information provided for all of these appliances, bags, wafers, sticky things, powders, wipes, and every other doodad available to us to help us cope is industry-wide is very poorly organized and not very clear. My complaint centers around the internet as that is where I get most of my info. I'm just surprised that this market hasn't caught up although everything seems geared toward the medicare patients rather than private insurance patients. The info online makes it difficult to compare apples to apples when trying to make a decision about what to order.
I'm happy with my decision for the surgery. The recovery is long but I see progress certainly every week if not a little every day. I'm gaining weight, gaining strength, and getting back some of the security and happiness that UC had taken away. It was a long slow grind of an illness that had me very depressed and even though the surgery and recovery thus far has been no picnic I'm starting to feel like my old self. That evil colon was cut out and I'm getting my life back...even if it's a little different than before.
Thanks for reading. Hope you feel better!
Brent H.