I’ve got an appointment with Dr. Cowan of San Francisco on Monday. His treatments fall into the realm of intense dietary changes plus supplements to treat UC and other autoimmune diseases. Thinking about the meeting, I feel stressed. In fact, as much as I’ve been eager for a “natural” solution to erase my symptoms, I now realize that I’ve had latent anxiety about this approach for weeks.
There are many dietary approaches whose adherents claim can “cure” inflammatory bowel diseases (IBD), and as far as I can tell, each of these diets has a few things in common. First, they’re fanatically restrictive. Some restrict types of carbs, some restrict types of meats and carbs, some disallow cooked foods, some disallow meats entirely,…the list goes on. I say, “fanatically,” because the claim is that not following the edicts of the diet is likely to lead to the return of symptoms. Needless to say, this is hard to swallow, given that for every food type promoted by one diet, there’s another diet saying, “Never eat that!” One is left not knowing where to begin.
Second, they all limit processed and prepared foods. No crackers, no chips, no canned food, no to most everything on a restaurant menu. Now this is decent advice in general. There’s far less nutrient value per-calorie in packaged food as compared with relatively similar ingredients prepared from scratch. Still, it’s hard to do. 90% of the supermarket is packaged, limiting one to the deli/meat counter, dairy, and produce. (And seafood, if you like that kind of thing…which the diets say you should so you can get your salmony Omega 3’s.)
Third, most of them promote one type of supplement or another. (Notable exception, the SCD, though calling for homemade yoghurt for the probiotics, specifically discourages most supplement use.) Aside from the tracking that taking supplements adds to one’s day, this habit quickly gets expensive.
I want to become that person who prepares everything he eats from scratch, I do! I want to become the foodie, creating delicious, nutrient-rich meals for my family, hosting healthy dinner parties, and brewing my own kombucha, kefir, and kvass. It’s just that past performance suggests that I don’t have it in me. Rather than transform myself into a self-aware eater, I’ve gobbled fast food and snacks even during the worst moments of my flare-ups. And I think “transform” is the key word here; following the advice that I expect to hear from Dr. Cowan means changing my life at a level so fundamental that most waking moments will require me to behave significantly different than what I’m used to.
So I’m left with this. Going the save-my-colon route, which requires the above-mentioned life changes, could very well put my symptoms in remission. (I’ve talked with one of Dr. Cowan’s patients who’s been in remission for a year after going through much the same as I: weight-loss, bleeding, cramping, and no medical solution other than surgery.) But then there’s the fear. Can I put myself and my family through these dietary restrictions for entire years? What if I slip on the diet, and my urgency and bleeding returns? What is the outlook a decade from now? Two decades from now? Might I not end up with colon cancer regardless? Will I end up right back where I started?
Sadly, there are no statistics available for the long term success rate of these approaches. It’s a leap of faith.
Doctors of modern medicine will tell you straight up that the only cure for ulcerative colitis is removal of the colon and/or rectum. Cure? Yeah, and I’ve got a similar cure for your lung cancer right here! Seriously, though, it feels like a stretch to call organ removal “curative” for that organ. Which entirely misses the point. Once the colon is gone, the worst symptoms of ulcerative colitis can never return. Freed from the metabolic burden of focusing the entire immune system on the colon, the body can return from eating its own tissues to stay alive (catabolism) to a state of growth and rebuilding (anabolism). Which is why even folks on the bad end of the j-pouch curve still feel great after their surgeries: even with continued high bm urgency and frequency, they still have enough energy left over from eating for their muscles, brains, and other organs to thrive. So no, I don’t think “cure” is quite the right word, but I’m starting to really grok what it is that leads people to make the cut, so to speak.
Realizing my fear of failure with dietary/natural treatment, I’ve started to ask myself (and others) some unusual questions. What nutritional capabilities are colon-only, and would thus be lost with colectomy? Does colectomy carry with it increased risk for later developing serious illnesses like heart disease or cancer? What is the colon good for, aside from the anal penetration that I was never brave enough to try? And do I really care whether or not I can ever poop again?* This last question is an important one because deciding to get surgery only gets you halfway there. You then need to decide what type of surgery to get, and the default seems to be a J-pouch.
Stats on J-pouches are part of what have kept me wary of colectomy. A significant percentage of patients (wish I had the number here, but it’s more than 1:100) get chronic pouchitis, wherein the pouch itself becomes infected and unpleasant symptoms-which-I-haven’t-properly-researched occur. The expected number of toilet trips per day is 6-8, with the lucky ones getting as low as 4-5 and the unlucky ones still stuck at 10+. After the first year, most patients have about 30 minutes between sensing a full pouch and getting to the bathroom. The rest still have high urgency and need to wear pads and/or diapers. And you can never fart again. Gas built up in the pouch feels identical to liquid waste (no nerve endings in small intestines, you know), so whether it’s gas or liquid, you still have to find a toilet and sit on it. Every 1-3 years you’ve got to go in for a pouchoscopy. Finally, the whole procedure requires 2 or 3 surgeries to complete (3 in my case…more if complications), each of which carries certain infection and drug reaction risks.
If I said colectomy wasn’t a proper cure before, all of this makes it seem even less so. From what I gather, J-pouch surgery is like trading an infested wound for a permanent bruise, potentially with painful blisters: an improvement, to be sure, but not exactly trading hell for heaven.
Then I asked Dr. Goetz, a surgeon at Oakland Kaiser, whether she recommended one surgery over another…the two choices being J-pouch or permanent ileostomy. She declined to give a firm recommendation, but she did say this: she sees a large number of her pouch patients back to treat for complications; by contrast, almost all of her ostomy patients disappear after their surgery, never to be heard from again. Which sounds sinister, except it means that, after the single surgery needed for a permanent ileostomy, those patients cease to be patients. They’re just regular people with a leaky, cherry-red, extra belly button and no bunghole. So do I really care if I never poop again? Maybe pooping is overrated!
Now to be fair, ileostomy isn’t without its frustrations. You can still get painful, vomit-inducing blockages, and there’s cleaning, bag changing, and occasional surface infections to deal with. But if the pouch is like a blistering bruise then, from what I gather so far, the ostomy bag is like a patch of dry skin. Sometimes it itches, and maybe even cracks a bit painfully, but by and large it goes unnoticed.
All of this is based on one conversation, so I’ve got some more research to do, but frankly the ileostomy is looking extremely appealing.
- Just one surgery means fewer potential complications, less overall recovery time, and me back on my feet faster
- I think the surgery can be done laparoscopically. The first of three** surgeries for J-pouch can also be done laparascopically, but it’s likely that a larger hole would need to be opened on a subsequent surgery.
- No urgency. Ever.
- Frequency = 0, always. Of course, you still have to empty the bag, but you get to do it on your own schedule. Sort of like waiting for labor to come versus induced labor or caesarian: in the latter cases, you get to choose when to have the baby, which can give one a strong sense of control
- Since there are far more places to pee than to poo (on a tree, in the ocean, on a wall…in certain countries), and since I can hold my pee pretty well, never having to take a shit means not getting interrupted during long activities
- No more farting. Well technically I wouldn’t ever pass gas in public with either operation because of the hole can’t-tell-gas-from-bile issue with the pouches. So either way, this is a bonus given my old reputation for smelling up a room.
- No more rectal cramping. Ever.
- No more anal probes.
- Cool and freaky biology experiment to show my stronger-stomached friends. Not much of a plus, I know, but with a J-pouch, all you get to show is a scar where your temporary stoma was.
Long story short: it’s a good bet that I’ll have a permanent ileostomy in the next 8 weeks.
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Footnotes
* The answers based on my current understanding: only water re-absorption, an important evolutionary adaptation whose benefits are less critical in the age of bottled water; no known risks, and of course the risk of colon cancer drops to 0%; nothing…nutritionally speaking, the colon is a sack of shit…still, the prostate gland loves stimulation, so don’t knock anal penetration; No, I don’t care whether I ever poop again.
** Because my albumin and pre-albumin are so low, both Dr. Goetz and Dr. Stricker (at the SF Kaiser) believe that a J-pouch would best be done in three stages for me. First would remove the colon and create the stoma, leaving the rectum in place. 5-6 months later, after getting stronger from being anabolic, the pouch would get created. 2-3 months later, with the rectum mostly removed, the pouch would get connected and the stoma pushed back in.
