I have been reading blog posts from people who have ostomies, and who have had reversals. It's tough either way. Here is my current status after having a 3-month ileostomy reversed (following rectal cancer treatment with chemo and radiation).
I had a few problems with the ileostomy, many of which were resolved due to advice from fellow ostomates. Thank you all for your support -- I could not have learned to work with the pouch without your help. After 3 months, the doctor was ready to "take it down." I did not know what was in store for me after that point.
Like others, I thought I would be completely healed in about 3 months. Because I am a male, with less space in the pelvic region, I do not have a J-pouch -- I have a direct connection (no rectum). I didn't realize everything that a rectum does, but I sure miss its function! The colon seems like a radiator hose (thick and strong) and I often lose the battle between my colon and my sphincter. The surgeon tells me that the colon will dilate within 2 years of surgery and that things should be fairly normal. In the meantime, I have up and down days.
Foods I can tolerate pretty well -- white/brown rice, rice noodles, salads (be near a bathroom, though), lean beef, turkey/chicken white meat, chili, steel-cut oatmeal (that's the best), fresh and steamed veggies, honey (but not sugar), soy milk, good whiskey, a little red wine.
Foods with which I struggle -- pasta, "empty" carbs, potatoes, onions (the worst), beer, ice cream, etc.
I've read other posts where people find relief by eating marshmallows (all sugar? really?). I also read about keeping a low-fat diet, but I find most of my success comes from a South Beach-type diet (fiber with the carbs, not high fat, though).
I am glad I had the reversal, but it is a much longer road than I thought it would be. At first, I wished I could go back to having the pouch. I could predict things then. I have entire weeks where everything goes well, then I have a "set-back" week. I haven't found a great way to prepare for long trips or playing music (I play guitar), except to skip the meal beforehand. Afterward, I have an "attack" if I wait too long. If I skip dinner (like last night), my bowels will start to eject lunch around 11:00 at night. I was not near a bathroom, so I soiled my pants (it's nice to be able to say this to people who understand what I'm going through). I've worn Depends for a year now and would love to switch to regular underwear soon.
Who has some advice for me regarding long trips in the car? I am driving 14 hours from Baltimore to Maine in a week and would rather not stop so often or risk stinking up the car.
I'm sure my new "normal" will be unlike the old one -- I just need to wait another year to find out how it will be.
Keep up the good work, Osto-friends. There is no place else for us to be perfectly honest about our troubles (who wants to hear about crap, anyway?).
Top 5 Collections
Advertisement
As we approach Ostomy Awareness Day on October 7, we want to hear about your plans to celebrate the ostomy community!
For ideas on how to get involved, take a look at our activities.
For ideas on how to get involved, take a look at our activities.