I’ve been mulling over a blog post for a few days now. Not sure how to start or what to write. So I think I’ll do my best to keep things fairly straight-forward and simple.
Fact: On August 8 I had a total colectomy. This means my colon was completely removed. My appendix was also removed. As well 10 cm of my small bowel was removed. My colon was 65 cm in length.
Fact: I now have a stoma. A stoma is made from the small intestine – it is turned inside out and pulled through a hole in my abdomen. A bunch of tiny stitches (and I’m guessing internal staples) hold it in place. It has the look and feel of the inside of the mouth. It doesn’t hurt to touch it. This is how poop leaves my body.
Fact: I now wear an appliance. The appliance is essentially a bag (but I don’t like calling it a bag…) that covers my stoma. The poop is collected in my appliance. I empty this five or six times a day.
Fact: This is all collectively called an ostomy. There are multiple types: ileostomy, collostomy, and urostomy (and maybe more). I have an ileostomy. This is actually more common than most people realize. People with ulcerative colitis, Crohn’s Disease, colon cancer, colorectal cancer, bladder cancer and more may have an ostomy.
Fact: It’s not horrible. It might sound horrible. I mean who wants to walk around carrying their poop? Oh wait, other people do this but instead it’s in their colon…. If you see me, you likely won’t even notice that I’m wearing an appliance. And if you do, oh well.
Fact: The recovery takes a while. I’m now 15 days post-op and I’m finally starting to feel better. I’m getting out for daily walks. I’m able to eat out at some restaurants. I even went to the mall! It will be a few more weeks before I can think about the bicycle. Frankly, the bicycle is the furthest thing from my mind. I’m content with a couple of 20 minute walks.
Fact: My diet right now is really limited. Only cooked vegetables without any skin, seeds, membranes, peel, etc. Only white bread, white rice, white pasta. Fruit is limited to canned peaches and pears, applesauce, cantaloupe, banana and mango. Protein is super important for the healing process so I’ve added in Kefir, peanut butter, fish, beef, and tofu. I seem to be eating a lot of soda crackers. Arrow root cookies and chocolate pudding are the bomb.
Fact: I’m doing well. I’m okay with all of this. I’ve had a lot of time to think about living with an ileostomy. I’ve talked with a lot of people who have an ileostomy. An ileostomy does not limit me. Once I’ve fully recovered there is no reason that I cannot start riding a lot again.
Fact: I will need a second surgery. I don’t know when this will be. I have an appointment in February to meet with a surgeon. The second surgery will be to remove the rest of my rectum.
Fact: Marc is superstar. He has been doing everything in the house for the past three weeks. I’m not permitted to lift anything over 5 lbs for eight weeks. This means I can’t really do anything in the house.
Fact: I don’t have to take any more medication for the ulcerative colitis.
Fact: This is not a cure. Even though my colon has been removed – this is where ulcerative colitis strikes, I am not cured. I still have about three inches of my rectum left – the disease could recur there. My body could also outsmart all of the brilliant doctors and surgeons and trigger another auto-immune response in another organ. But I’m not going to worry about this.
Fact: Right now today, I actually feel better than I have in a long time. Yes, I’m fatigued but it is a fatigue I can understand. No, I can’t ride my bike or do yoga or eat the foods I love but I know that soon enough I can do all of this again.
Fact: I’m only looking forward. This is short term hassle for long term life enjoyment.
John & Jean wish you all the best, and hope you get well soonxx
Thank you very much.
So glad to hear you’re doing well!! You’ll be back to everything soon enough. I rode with my ostomy years ago. I worked out at the gym, too. You can do it! And no meds for you!!! That’s awesome.
HI Rebecca! Congrats on your wedding! This is great to know. Feeling better everyday. Hoping to get out to a couple of local ‘cross races this year and ride around very slowly. You’re a super inspiration for me.
I am sorry that the universe ‘chose you’ to have to go through all this but in the end you will prevail. I admire your courage and persevering and I see from all the online and FB comments you have a whole host of friends and family who are sharing this journey with you. Good luck on your continued recovery and see you again soon!
HI Anne! Great to hear from you. Some days it does seem like a rough deal, but over the years of dealing with ulcerative colitis, I’ve always managed to come out on top. This is just another challenge that I’m sure I’ll adapt to very quickly. I’m still off from work – coffee date on a Monday?