This is a question for those of you who had a total colectomy to rid yourself of Ulcerative Colitis:
Did any of you experience a "blow out" of your rectal stump after the surgery? I went through one myself, but I haven't run into any stories of anyone else experiencing this complication. My surgeon told me that it is rare, but possible with any patient suffering from UC. He went so far as to say he expected it to happen at some point between my first and second surgeries. I just wish he had warned me about it ahead of time! Although, I do understand his reasoning that he doesn't like to scare his patients by going into detail about all the many possible, rare complications that can come up.
For those interested, this is my story as posted to my blog:
"Friday morning [10 days post-surgery] I woke up to a new pain at the bottom of my incision. Upon closer inspection, I found that a hole the size of a pencil eraser had opened up. Even better was the fact that it was leaking a good deal of this mucous-like fluid. At times it was even coming out in a steady stream. I didn't worry too much about it, though, as the wound care nurse was coming that morning to check me out and give me another lesson on changing my ileostomy bag.
Jennifer came and did check it over and said it looked okay to her. I didn't exhibit any of the physical symptoms of infection (fever, chills, vomiting, etc.) and the fluid coming out wasn't of an unhealthy color or odor. Apparently she felt it was worth informing my surgeon of, however, as I later received a call from his assistant. She explained that this was common in some patients following surgery and that I should simply keep an eye on it over the weekend. If things worsened, they could squeeze me in today and take a look at it.
Saturday saw a slight increase in the size of the opening and moderate increase in pain. It was the change on Sunday that had me concerned. I woke up to some serious pain and looked to see that the opening had swelled to nearly the size of a grape. It looked as though it was working its way north, busting stitches open along the way. I called the emergency contact number and talked with the colorectal surgeon on duty. His advice was to wait it out until today if possible. He felt I wasn't in any immediate medical danger and that it wasn't worth my time to drive over and wait it out for a couple hours at the ER to see someone. I thought this made sense as it should be the guy who did the original work who looked it over if possible. So I left Vicki a message explaining what had happened and told her that I had to get in one way or another.
I ended up with a 2:30pm appointment this afternoon. After getting back to the exam room I was eventually greeted by my surgeon, his assistant, and a stoma specialist nurse. They stripped me of my bag and dug into examining my new opening. Although he was surprised at how tender the area was, the doc insisted that there was nothing unusual about its size or the fluid inside. He went on to explain that all of this actually happened for a good reason! Had this not been the case, I would have been extremely ill with an internal infection and probably checked into the ER by this time. Let me explain...
When the first stage of surgery is performed, the rectum is left behind as a holder for the sphincter. While the sphincter is a necessary part of the final product, the rectum is removed in the second stage when the j-pouch is created. Because the symptoms of Ulcerative Colitis are created by an overactive immune system, this organ can still be affected even without any food waste passing through it. Most people experience some level of inflammation as a result and, in some cases, this causes the rectum to "blow out" at some point. The surgeons plan for this possibility by grafting the top of the stump to the abdomen, at the bottom of their incision. That way if the rectum does fail, it weeps to an external drain and not into the internal cavity.
My surgeon said he was pretty certain this was going to happen to me based on how far gone my colon and rectum were at the time of the surgery. He also said he did not go into details of this possibility with his patients ahead of time because of the odds favoring they may never experience it. I understand where he is coming from with that approach, but it still would have been nice to know ahead of time. Then again, there's probably a bunch of other possible complications that I am better off not knowing about because they will never affect me.
They flushed me out and packed the opening with gauze. I was instructed on how to perform the packing so I can repeat the process twice a day for the next few weeks. He tells me that within 4-6 weeks it will almost completely heal from the inside out. The opening itself will never close completely, however, and some small amount of fluid will always drain until the next surgery. Yes that sucks, but it's a healthy process and there's much worse I could be having to deal with. It's nothing that can't be handled by simply coving it with a bandage and some gauze.
In the end, it does suck to still be in pain and to have this wound to take care of. The thing is, I really don't care a whole lot because the ileostomy is working so well. I'm hungry all the time now and love being able to pick and choose whatever I want to eat (with a few minor exceptions). Such a huge psychological boost, this alone has really made me feel like I have my life back. I went into this whole process to gain that freedom back and so this other issue is only a temporary inconvenience.
I'd take the lifestyle I have even now over where I was at two weeks ago (pre-surgery) in a heartbeat!"
26-year-old diagnosed with UC in 2004
Underwent stage one of J-Pouch surgery on September 16, 2008
Now living symptom-free