Last night while perusing my Twitter timeline, I noticed a couple of my fellow IBDers embroiled in a debate about cures for inflammatory bowel diseases. When the word cure is used in the same breath as IBD, it usually centers on the question of whether surgery to remove the colon is a cure for ulcerative colitis. That’s the surgery I had back in May.
Before I decided on the operation, my gastrointestinal specialist once told me, “I’m offering a cure here,” referring to a total colectomy and the creation of either a pelvic pouch or permanent ostomy. My response at the time was, “it’s not a perfect solution,” which was a pretty tame response. What I really should have said was, “if surgery was a cure, everyone with UC would be lined up for their turn in the OR.” I always think of snappy comebacks after a discussion. “The jerk store called, they’re running out of you!”
You can probably gather from my imagined zinger that I’m opposed to the notion that surgery is a cure for UC. But before I backup my viewpoint, I think it would be useful to note the line of reasoning that leads some people to view the colectomy as a cure:
Since UC affects only the colon and not the entire GI tract, as is the case with Crohn’s disease, removing the colon removes the part of the body where symptoms originate.
Without the diseased colon in the way, the hallmark symptoms of UC – diarrhea, urgency, bloody stools, and abdominal pain – should be eliminated.
You could therefore argue that if the symptoms are gone, the disease is gone, et voilà! A cure!
Here’s how I would refute the points listed above:
The colon may be the part of the body where symptoms of UC originate, but it’s unlikely that the disease itself originates in the colon. UC is an autoimmune disease, and a poorly understood one at that. There’s no known cause of UC, and because it is a dysfunction of the immune system, which involves a number of organs, a myriad of factors outside the colon could be at play. As such, removing the colon may not necessarily remove the element(s) that trigger dysfunctional immune responses. A UC patient who has his/her colon removed may yet face other autoimmune diseases such as rheumatoid arthritis or ankylosing spondylitis.
A colectomy may rid a UC patient of the disease’s hallmark symptoms, but new difficulties will arise: increased bowel movements (4-6 a day), the risk of bowel obstructions, loose stools. In the case of those who have an ostomy in lieu of a pelvic pouch, other challenges arise, such as leakage from the ostomy appliance, skin irritation beneath the appliance, and hindrances to certain activities.
Merely noting the alleviation of UC symptoms does not take into account the sort of lifestyle that a patient faces on the other side of surgery. I would argue that after a colectomy, UC symptoms are not eliminated so much as traded for less severe challenges.
Let’s use me as an example and contrast my life before I had UC and after it was supposedly cured. Before the onset of UC, I would have 1-2 formed bowel movements a day, I had no dietary restrictions, I took no medication, and I could easily sleep through the night without interruption. In my current state, without colon and with an ileostomy, I have to make 6-7 bathroom trips each day to empty loose stool from my ostomy bag, there are foods that I genuinely dread out of fear they could cause a blockage, I take a prescription proton pump inhibitor and an iron supplement daily, and I have to get up at least once every night to empty my ostomy bag.
I’m en route to a pelvic pouch (a.k.a. J-pouch), which may change my bathroom/dietary/medication routines for the better, but challenges will persist. My current difficulties are in many respects an improvement over the dark and bloody days of UC flare-ups. However, they’re a far cry from the sunny days of life before UC. If I was really cured, wouldn’t my days be brighter right now?
One last point that I’d like to make is that the colon is not a superfluous organ.
It has an important role in the body – to form stool by absorbing water, salt, and some nutrients. A true cure would restore the colon to its proper functionality, rather than simply slashing it out of the digestive system and forcing other organs to pick up the slack.
To sum up, surgery is NOT a cure for ulcerative colitis. A cure would allow the colon to remain intact and function as a healthy colon should. A cure would allow UC patients to return to the lifestyles they enjoyed before the onset of the disease. Surgery does neither. Instead it creates a new lifestyle that remains fraught with risks and potential complications.
All of this isn’t to say that there is no value in surgery. It’s a definitive treatment. I’d take 4-6 bathroom trips a day over the 25-30 a day I’ve sometimes had to make during particularly dreadful flare-ups. A patient can achieve more peace of mind with an ostomy or a pelvic pouch, knowing that they can make it to a bathroom when needed. There may be a reduction in physical pain as a result of surgery.
There are benefits, but to call surgery a cure is inaccurate at best and dangerous at worst. Dangerous because the c-word may tempt some UC patients to undergo surgery without properly considering the drawbacks and potential problems it brings. Moreover, suggesting UC has a cure makes it harder for IBD organizations to garner support. Why would anyone care about or donate to a cause that’s already been resolved?
I won’t be so timid the next time someone tells me there’s a cure for ulcerative colitis. I’ll bark back, even at those who put the term “cure” in quotation marks. No cure is no cure, and if I haven’t stressed it enough in my little treatise above, there is no cure for inflammatory bowel diseases.
NOTE: I’m so far from being a doctor it’s not even funny. So if any of the information above is inaccurate or misleading, please drop a note in the comments section and I’ll rectify whatever I f*cked up. Also, if you have any counterpoints to what I’ve listed in this article, I’d love to see them in the comments section too. Thanks!
This post originally appeared January 31, 2014 on rasheedclarke.com.