At first, I hated it. But looking back, I understand now how much I really needed it.
I miss my stoma bag. There, I said it.
It’s probably not something you hear often. Nobody really wants a stoma bag — until you realize it was the one thing that enabled you to live a normal, healthy life.
I had emergency surgery to remove my large intestine back in 2015. I had been unwell for a couple of years, but had been frequently misdiagnosed despite showing a number of symptoms that indicated inflammatory bowel disease.
I was unintentionally malnourished. I suffered rectal bleeding and horrendous stomach cramps, and I survived on laxatives for chronic constipation.
And then my bowel perforated. And I woke up with a stoma bag.
I was told, after the large intestine was removed, that I had been living with ulcerative colitis and that my bowel was severely diseased.
What is ulcerative colitis?
Ulcerative colitis (UC) is a type of inflammatory bowel disease (IBD). Symptoms can range from mild to severe. In some cases, you may not have any symptoms. Treatment focuses on managing or reducing symptoms.
But I couldn’t think about that. All I could think about was that I had a bag stuck to my stomach, and I wondered how I’d ever feel confident again.
I’d never even heard of a stoma bag, and after Googling it, images showed nothing but older people living with them.
I was 19. How would I cope with this? How would I feel attractive? How would I maintain my relationships? Would I ever feel confident to have sex again?
I know, in the grand scheme of things these worries may seem minute, but they were overwhelming for me. I was told I would only have my stoma temporarily, 4 months maximum — but I ended up having it for 10. And that was my decision.
For the first 6 weeks with the bag, I couldn’t change it myself. Every time I touched it, I wanted to cry and I just couldn’t get used to it. I would rely on my mother to do all of the changing, and I would lie back and close my eyes so that I didn’t have to acknowledge what was happening.
After the 6 weeks, I’m not sure why or how, but something clicked.
I realized that this bag had saved my life, and the only way I could get through such a traumatic experience was to accept it.
And so that’s what I did. It wasn’t immediate acceptance — it took time, of course — but I helped myself in a number of ways.
I joined online support groups where I realized that actually a lot of other people my age were also living with stoma bags — some permanently. And they were doing amazingly well.
I started trying on old clothes, clothes that I thought I’d never be able to wear again, but I could. I bought sexy lingerie to make me feel more comfortable in the bedroom. Over time, I got my life back, and started to realize that this stoma bag had given me a much better quality of life.
I was no longer living with chronic constipation. I was taking no medication, no laxatives. I was no longer having horrendous stomach cramps, nor was I bleeding, and I had finally gained weight. In fact, I looked the best I had in a long time — and I felt the best, too.
When the reversal surgery — which entailed removing my stoma to have my small bowel reconnected to my rectum to allow me to go to the toilet “normally” again — came around 4 months later, I decided I wasn’t ready.
I was told that I would need to make a decision within 2 years to ensure I had the best possible outcome.
And so another 5 months later, I went for it.
The main reason I went for it was because I was scared of wondering “What if?” I didn’t know whether life would be just as good with a reversal as it was with my bag, and I wanted to take a chance on that.
But it hasn’t quite worked out.
I’ve had problems with my reversal since day 1. I had a horrible healing process, and I now have chronic diarrhea, up to 15 times a day, which leaves me pretty much housebound.
I’m in pain once again, and I rely on medication. And I have accidents, which, at the age of 24, can be very embarrassing.
If I do go out, I’m constantly worrying about the nearest toilet and whether I’ll be able to make it.
And so, yes, I miss my bag. I miss the quality of life it gave me. I miss feeling more confident. I miss being able to go out for the day without a care in the world. I miss being able to work away from home. I miss feeling like me.
This is something, when I first woke up with a stoma bag, I thought I’d never feel.
At first, I couldn’t wait to get rid of it, and now, 4 years later, I realize just how much I needed it — and still do.
It eased the burden not just from ulcerative colitis, but from the pain, fear, and anxiety that goes along with it, too.
You may be wondering, “Why don’t you just go back to a stoma bag?” I wish it were that easy, I really do. But due to the two major surgeries I’ve had and the amount of scarring, it could mean further damage, risks of a new stoma not working, as well as infertility.
Perhaps one day I’ll be brave enough to do it again and risk it all — but after the last “What if?” I’m scared to go through it again.
If I could have my stoma bag back with not a care in the world, I would do it in a heartbeat.
But right now, I’m stuck with missing it. And realizing how thankful I am to have had those 10 months where I lived pain-free, happy, confident, and, most importantly, as my completely authentic self.
Hattie Gladwell is a mental health journalist, author, and advocate. She writes about mental illness in hopes of diminishing the stigma and to encourage others to speak out.