Is Surgery the Cure We’ve been Looking for?
This month marks two years since I had my colon removed. There is a vast misconception floating around out there that surgery is a cure for ulcerative colitis. This does not sit well with me and I’ll tell you why.
When Dave and I are out in public, and people are curious to know how I’m doing after surgery, I say, “It’s an adjustment. I still have good days and bad days, but mostly good.”
Yeah, but you’re better now, right?
Sometimes they immediately look worried and say, “Yeah, but you’re better now, right?”
Somewhat caught off-guard, I reply, “Yes, but I’m not ‘normal.'”
Dave and I have never agreed on whether surgery is a cure or not (Amber, the offending organ is gone. End of story! No, it isn’t.). He will usually pipe in and say, “Yes you are normal!”
A little annoyed, but not one for causing public scenes, I end up saying, “Well, I’m as normal as can be expected living without a major organ. There are problems that come along with it, but they’re much more manageable…” Silently, to myself, I add, “…than having an ulcerating bleeding colon causing intense pain day in and day out.”
Because IBD is (I believe) largely a genetic thing, you cannot “cure” it by simply cutting out the diseased organ. In fact, there’s one theory out there about those who go on to deal with chronic pouchitis; that it is perhaps just a continuation of the disease and not a different condition. They speculate this because of the fact that people who deal with chronic pouchitis are (in general) UC patients. One has to wonder whether replacing the organ with a new one would doom it to being diseased as well. Especially considering the extra-intestinal manifestations that many patients experience.
Take Brooke Abbott from Crazy Creole Mommy, for example. Although rare, Brooke also deals with ankylosing spondylitis which is a complication of ulcerative colitis. Brooke had her colon removed in April of 2012. When asked if she believe the removal of her organ was a cure, she said, “Unfortunately it’s not a cure. It’s more of a treatment. Some people respond better than others to the treatment. In the sense that they are as close to being cured as they will get while having an incurable disease. And some of us, still have serious complications, but are better off with this form of treatment than without.”
Brooke lives with an ornery j-pouch. She has good days and bad days, but she’d be the first to tell you, “I’m good, right now, at this very moment in time. I don’t know what tomorrow brings…or rather an hour from now. This disease is complicated and controlling. It does whatever it likes to do, no matter my gallant efforts to suppress it! I’m better today than I was four years ago. And right now, I’m better than I was this morning.”
Now, I’d like to introduce you to a lovely lady who shares my name and my disease. Amber Tresca from About IBD. She had her colon removed in 1999 (read her story here). When asked whether or not colon removal is a cure, she says, “Never, in the course of my treatment, did any of my healthcare professionals ever tell me I would be ‘cured’ or ‘as good as cured’ after j-pouch surgery.” This is an important fact to point out. Like Amber, I was never told that the surgery would cure me, only that it would help me. This “cure” factor was only something I read about on the internet.
Amber also says that she “was warned that other complications could still spring up, because the ulcerative colitis wasn’t really gone. We just removed the organ it was attacking.” So there you have it.
Next I want to introduce my friend Kristin Harris. We had the takedown surgery for our j-pouches within about a week of each other. While she is also enjoying life with a j-pouch, she says, “I used to believe having my colon removed would cure me. How could I not when I had doctors telling me it would do so? After being so sick for so long, I wanted desperately to believe it.” I hate to say it, but many of us living with ulcerative colitis get to this kind of desperation. I know I did.
Kristin says that she got angry and scared when people said surgery wasn’t a cure. I think this is why Dave is so hell-bent on believing that having my colon removed has cured me. Neither of us want to have to deal with going through the horrors of UC again.
Kristin has now been living with a j-pouch for a year and a half and says that she’s slowly realized that it isn’t a cure and saying that it is, “only hinders the search for a TRUE cure for ulcerative colitis. (…) Am I in remission? Yes. My body no longer has a colon to attack. Am I the same as I was before my disease? Absolutely not.”
Kristin is doing beautifully. She is living her life and says that she’s had to relearn how to use her new insides, “I am very aware that I do not have my large intestine every single day. I’m still dealing with the symptoms that come with not having a colon. I like to think of it this way: to me, after the hell I’ve been through with UC, going to the bathroom on my own terms (and painlessly without blood) 4-6 times a day is heaven.”
People who’ve known her since being sick have also commented on how well she’s doing. But that annoying phrase “so you’re back to normal now, right?” is still bothersome. She says, “Having my colon removed was a drastic way to reduce my symptoms since all medication failed me. It’s a better normal than ulcerative colitis. But you can see why it bothers me when people assume I’m ‘all better.’ I’m better than I ever could have been [with UC], but I’m not cured.”
There are a lot of success stories out there when it comes to people living with UC who’ve had surgery. I would be remiss, however, if I didn’t share with you the opposite side. Someone who has lived with j-pouch failure.
That’s why I’d like you to meet Marisa Troy. She is the lovely blogger behind JournalingIBD.org. She’s got quite the story of her life without a colon. Marisa was diagnosed with ulcerative colitis at a very young age and has undergone multiple procedures in her search for what she was also told would be a cure.
Marisa acknowledges that, “removing your colon/large intestine is extreme, given it is a major organ,” and says that, “a colectomy is a last resort treatment option given once you start cutting, your body is forever changed. I will never be ‘fine.'”
Marisa explains that leading people to believe a colectomy is a cure, “isolates people who are still struggling. There are many people who have a lot of issues from this drastic surgery so by saying a colectomy is a cure or claiming someone is ‘all better now’ minimizes the severity of the disease, and what that person will have to continue to deal with.”
For Marisa, “a cure is when you go back to the exact person you were prior to the diagnosis. Like an appendectomy.” The hope is that, “their quality of life is (…) better than when they had a colon but they will always have to manage their Jpouch, ostomy, kock pouch, pull through, etc.” It will affect every aspect of your life.
All in all, I love my life without a diseased colon. There are days where I wish I had a HEALTHY colon, but overall, it’s great! The decision to get a j-pouch is a very personal one and you definitely need to weigh your options.
While Dave, my husband, still clings to the “surgery cure,” he frequently asks me things like How are you doing? Are you ok? Are you sure you’re ok? You see, he still worries about things like pouchitis… or the fact that I may have had Crohn’s Disease all along. Inflammatory Bowel Disease is a very complex disease (like so many autoimmune diseases). Why should we expect a cure to be as simple as making a few cuts and taking out a few guts?
For more information about j-pouches, please see my blog posts here, here and here. For information about ileostomies, click here. Also, be sure to check out this post about why my friend chose an ostomy over a j-pouch.