In 2009 I was diagnosed with an Inflammatory Bowel Disease called ulcerative colitis (UC). If my doctor told me back then that I may need ostomy surgery, I would’ve been shocked and horrified. Six years later, when the Remicade stopped working and I was feeling rotten, I started wondering what to do next. That was the first time I began thinking seriously about having the surgery.
My gastroenterologist and I agreed to try one more drug, Entyvio. This experience was not good, and while Entyvio works for many patients, it did not work for me. Surgery was my last and best option, so on August 8, 2016 I had my entire colon removed and now I live with an ileostomy.
Leading up to the surgery, I did have some doubts. Was an ostomy the right decision? Should I wait for a new drug to come on the market? Could I make the best life possible living with UC? Of course, all of these questions came from a place of fear because I didn’t know what my life would be like with an ileostomy.
I’m now two months post-surgery and have to tell you that this was one of the best decisions I’ve ever made. At 44-years-old I feel great. I have more energy than I’ve had in years and finally feel like myself again. Here are some things I’ve learned in the first two months living with an ileostomy.
I know who my real people are.
I found out pretty quickly who my real friends are. These are the people who call, email, drop by, offer to run errands, and simply are willing to sit and listen to me talk endlessly about my stoma. These are the people who are asking me how I’m doing and genuinely want to know. These are the real people in my life.
I feel like I can accomplish anything.
Prior to my surgery, I scoured the Internet looking for websites and blogs written by people who were extremely active, fit and set big goals. This is who I was before I got sick. I feared that having surgery would stop me from achieving my goals. I'm proof that ostomy surgery doesn’t mean the end of dream-chasing.
It's best to take small steps forward when eating.
I stuck to a low-residue diet for the first eight weeks following surgery. Before surgery, I ate mostly raw foods (yes, even with ulcerative colitis), meat only once a week and I definitely did not eat white bread. With an ileostomy, I was committed to following the instructions given to me by my ostomy nurse. Plus, I was terrified of getting blockages as a result of something I ate, so having patience with food worked.
I’ve eaten apples (skin on), chocolate cake, salads with cucumbers and tomatoes. I eat lentils. I eat cabbage. I eat chickpeas. I eat meat. I eat whatever I want. Sure some foods do different things on the way out, but so what? For me, it’s no different than dealing with a regular colon. I’m also learning how my stoma reacts to different food and liquids.
There will be rough days, but the good outweighs the bad.
Recovery from surgery and getting used to life with a stoma and pouch is not easy. I’ve had some days where I just don’t want to leave the house. I’ve had a couple of leaks and I even had a pouch blow-out. Luckily the blow-out was at home and I know exactly what caused it (too much Lebanese food the night before…). But for these few bad moments, I’ve had so many more good and very good days… like being social and enjoying Lebanese food! Having an ostomy is really just like dealing with normal life - sometimes bad stuff happens, but not that often.
Strangers can’t tell I’m wearing an ostomy pouch.
I used to constantly ask my husband if he could see my pouch. I finally believed him that he can’t and I know that random people also can’t see it. I’m no longer self-conscious about a bulge under my shirt. Once all the swelling went down in my belly, I can wear whatever I want and I’m not self-conscious. I don’t wear any special pouch wraps, pouch cover-ups, or other fancy pouch concealing clothing. I wear all of my regular clothes and feel completely comfortable.
I can still race my bike with an ostomy.
This was perhaps my largest concern. I’m happy to say that I’ve done two races and numerous training rides after recovering. So far so good. I’ve learned what and when to eat before a race so I can ensure that my pouch stays empty during the race. I’ve mastered the skill of emptying my pouch in porta-potties and other less than desirable toilets. I know that my pouch will feel fine underneath my spandex cycling shorts and apart from a simple pouch cover to help absorb sweat, I don’t wear anything to conceal it. In fact, a few of my fellow racers have asked me why they couldn’t see my pouch. :)
I truly feel really good.
In fact, I have more confidence now than I did before my surgery. Ulcerative colitis made me feel self-conscious and worried all the time. I didn’t stop living my life, but I definitely worried about how the illness would impact my day. With an ostomy, I don’t think about this. I empty the pouch when it needs to be emptied. I go out with friends without hesitation. I don’t worry about finding bathrooms anymore. My skin is better. I have more energy. My fingernails are growing again. I don’t have to take iron supplements anymore. I feel good!
I know my experiences won’t be the same for everyone, but when compared to the alternatives of being sick and feeling rotten, living with an ostomy is really so much better in my opinion. I feel like I can get back to living life the way it was before I was diagnosed with UC, and I really can’t wait to see what the future holds for me.