Three Surgeries in Under a Year: What it’s Like Living With IBD
Updated: Sep. 06, 2020
Excruciating symptoms, multiple surgeries and parental guilt: What it's like to live with Inflammatory Bowel Disease.
There’s nothing I want more than to be a good mom. But my ability to believe I could be a good mom disappeared when my health took a rapid decline after the birth of my daughter.
I was diagnosed with ulcerative colitis and Crohn’s disease, which are two main types of Inflammatory Bowel Disease (IBD), in 2008 and 2010, respectively. The disease causes chronic inflammation in the gastrointestinal tract and affects 1 in every 150 Canadians — the highest reported prevalence in the world to date. It can present in a lot of different ways. For some, it means making lifestyle changes in order to relieve symptoms such as fatigue, abdominal pain, weight loss, vomiting, rectal bleeding, and diarrhea. For me, it’s meant years of trying to get a proper diagnosis and exhausting so many avenues — prednisone, naturopathic supplements, diet changes, biologic medications — to try to find relief from my debilitating symptoms, the worst of which coincided with becoming a new mom.
I gave birth to Paisley in 2014 and was hit immediately with constant fatigue, severe nausea that made it nearly impossible to keep anything down, and abdominal cramps that were so painful, I couldn’t clutch my stomach hard enough. I would be breastfeeding and have to run to the toilet with her because my bowel movements were so urgent. But nothing was worse than when I had to be admitted to the hospital without her, when she was just six weeks old, because the bleeding, burning and pain from my rectum was so bad. I had to stop breastfeeding. I was devastated. As a new mom, that was a really hard time for me mentally and physically.
After numerous colonoscopies and starting up on yet another biologic medication, my symptoms quieted down and I gave birth to my second child, Oliver, in 2016. But two years later, the disease flared up again and I was also diagnosed with a chronic liver disease known as Primary Sclerosing Cholangitis (PSC). With both PSC and IBD, my doctor told me that I had a 60 percent chance of getting colon cancer and that my colon should, in fact, be removed. In that moment, I realized I didn’t have another choice. I didn’t have any room to feel sorry for myself because I knew it was the only option left. I had done everything I could. Now it was time to remove a part of my body that my immune system was choosing to attack.
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In June of 2019, I had what would be the first of three surgeries — an ileostomy, which involved a surgeon removing my entire large intestine and a large portion of my rectum. My small intestine was brought to the surface of my abdomen to create an opening, which is called a stoma. The stoma is what allowed stool to pass into an ostomy bag on the outside of my body, rather than through the rectum. For that period of time, I was surprisingly comfortable with the bag. Although it can get hot and sweaty and literally sounds like a crumpled up grocery bag when you roll over it in bed, I thought it would be more intimidating. It never made me feel self-conscious. It didn’t bother me if people saw it. I didn’t mind leaving it out or tucking it away for a particular outfit. The only time I thought about it was when I was being intimate with my husband, Ryan. But after having spent many years sick, where the majority of people either didn’t believe me or understand what I was going through, it was a beautiful change of pace to be able to visibly show what it’s like to be dealing with IBD.
I had my second surgery in February 2020. The surgeon took the end of the small intestine, created a j-pouch and connected it to the remainder of my rectum. Right after I had a loop ileostomy to give the pouch a chance to heal. A small incision was then made right above my left hip to bring the part of the small intestine closest to my stomach out as my new stoma. When I got home after a week in the hospital I felt worse, not better. I couldn’t walk or talk, and I could barely stop crying or throwing up. I was home for about 48 hours before I was rushed into the local ER. There, they found an obstruction in my bowel, which is extremely common after having this kind of procedure. Instead of surgery, I had to let the obstruction pass naturally. In a matter of minutes I went from laying in bed to screaming on all fours.
When I returned home three weeks later, I was really struggling with my stoma. My stool was liquid and it was seeping under the flange — which is a barrier that sticks to the skin around the stoma, so that the bag can attach — and burning my skin. I often couldn’t get the flange to stick to my skin because there really was no skin left to stick to. This made things complicated and very time consuming. My bag would blow off in the middle of the night, and I, the sheets and everything would be covered in shit. Showering, changing the sheets and getting new equipment could take three hours. And at this point, isolation rules had been put into effect because of Covid-19, and no one could come help me with the kids during the day while Ryan worked. I was extremely frustrated, exhausted, and in constant pain all the time. I felt like screaming, don’t give me a bag and tell me this is going to be better when it’s not — this isn’t quality of life at all!
The pandemic also created a backlog for surgeries. I was told it’d be more than a year before I could get a reversal, the last of my three surgeries to reattach my small intestine, so I could have regular bowel movements again. I was at the end of my rope. I got in touch with my surgeon and said, “No . . . no! You are not leaving me like this!” A spot opened in June and I had the surgery three days before the one-year anniversary of my ileostomy. I was beyond happy to get in — but it also meant being isolated in the hospital and spending yet another week away from my family.
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Cue all the feelings about not ever being able to be a “good” mom. But now that I’m on the other side of it, I can see that all those fears were totally unfounded. Yes, living with a chronic illness has meant that my experience of motherhood doesn’t fit the definition I had when I was younger, but it has in no way defined my ability to be a good mom.
My husband and kids were not only supportive, but truly took the time to understand what I was going through, every step of the way. Paisley always asked questions, and I made a point of answering openly and honestly every time. She was (and still is) so involved — and quite honestly, could have done an entire ostomy bag change all by herself. Even though Oliver is a little bit younger, I could tell that he wasn’t fazed by it. Neither of them looked at my body as if anything was out of the ordinary. They respected it by hugging me a certain way, asking for permission to touch my stomach, and not crawling all over me. I think because of this experience, they’re going to have an extremely compassionate way with other people — and I’m thankful for that. I also can’t imagine setting a better example for my children than to show them what it looks like to fight for a better quality of life.
I thought coming home without an ostomy bag would feel eerie, but instead I’ve felt relief. And, so far, everything seems to be healing up nicely. I’ll still have to do routine colonoscopies to make sure that the very small portion of my rectum that’s left remains cancer free. And though I technically still have IBD, I’m hopeful that this marks the beginning of an upswing for my health.
Every now and again I catch a glimpse of my stoma scar and everything about the past year hits me at once: I had three surgeries in under a year. It wasn’t easy, but I never gave up.
Amanda Fleming is 31 years old, lives in Ontario and continues to be an advocate for IBD awareness. This interview has been condensed and edited for clarity.
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