This Is What It’s Like Being Young and Housebound After Multiple Surgeries for IBD

I never imagined the surgeries that were meant to give me more freedom would leave me housebound and lonely. If you can relate, just know you aren’t alone.

I found out I was living with an inflammatory bowel disease (IBD) — ulcerative colitis specifically — after having my large intestine removed in January 2015.

Days before, I had gone to the hospital with severe abdominal pain, chronic diarrhea, and rectal bleeding. That year, I had also lost an excessive amount of weight.

The symptoms were at first mistaken for appendicitis, so I had my appendix removed. But after that surgery my symptoms worsened, resulting in emergency surgery.

I woke up with a stoma bag and was told I had been suffering with ulcerative colitis in my colon. It was so badly diseased that the entire thing had to be removed, forcing the surgeons to create a stoma.

I remember looking down at my stomach while shaking. I was 19 at the time and I’d always had a complicated relationship with my body. Tears started streaming down my face as I saw the stoma through the clear ostomy bag.

I was scared about what the stoma bag meant for me. And while it took some getting used to, I slowly came to terms with it.

I joined support groups and met other people with both stoma bags and IBD. In fact, my two best friends are people I met in those groups.

I was enjoying my life. I had gained weight and was no longer in pain.

I was told by my surgeon that I wouldn’t need the stoma for life because there was an operation that could reverse it, allowing me to use the toilet “normally” again.

In October 2015 I had an ileorectal anastomosis. This surgery connected the end of my small intestine to my rectum. I would no longer have a stoma and I’d be able to use the bathroom.

I was told the reversal wouldn’t be a fix. I was told that I’d likely need to use the toilet around 4 times a day and it would be looser than normal. That seemed like an OK compromise to me.

In reality, my stool was incredibly loose and watery, and I was using the bathroom constantly. I was told it was just my body getting used to getting back to normal and that things would slow down and form up.

But they never did.

For the past 5 years I’ve been going to the toilet around 10 times a day, and it’s barely more than water. I frequently suffer with incontinence and struggle to hold it when I really need to go, as it leaves me in excruciating pain.

Getting up extra early would unsettle my bowel and it would trigger frequent toilet trips before even getting to work.

I would get anxiety about using the toilet at work because the smell from not having a large bowel is awful — and it’s always loud and violent.

On my way home, I would be in so much pain from trying not to use the toilet that a few times I collapsed walking back from the train station. It was making me ill.

Luckily, my boss was able to accommodate the work-from-home flexibility. I assumed it would be temporary… but that was 5 years ago and I haven’t worked away from home since.

While I’m grateful for the flexibility, I miss the interactions that going to work provided.

I make plans with friends, but 80 percent of the time I end up canceling because my bowels are acting up. It makes me feel guilty and like I’m letting people down all the time, even though I can’t help it.

I’m constantly worried about losing friends, for fear they’ve had enough of my unintentional flakiness. Sometimes I end up pushing people away before they have the opportunity to leave, to avoid getting hurt.

I’m lucky in that I do have a few really good friends who are understanding and supportive. And I am so grateful for them.

I just wish I could enjoy life like they can without these limitations.

I think back to my stoma bag and I miss it. I had a life then — I could go out all night and work all day.

I wasn’t in pain.

Sure, there were the occasional leaky mishaps, but I’d take that over frequent toilet trips and regular incontinence any day.

I know I’m not alone and that there are many other people with IBD who are in a similar position to me, regardless of whether they’ve had surgery or not.

Be understanding when they cancel plans and know they’re not purposely letting you down.

Here are some ideas for offering support:

• Try to be more accommodating by doing things such as visiting them at home for a coffee when they can’t face plans outside the house.
• Try to show them you’re looking out for them by doing things like researching the nearest toilets before you do go out.
• Ask them about what they’re going through and make sure they know you’re there to listen.
• Don’t judge them, don’t make them feel like they’re being dramatic, and most importantly, don’t make them feel guilty.

We’re trying our best and working with what our bodies allow us to do.

The one thing you can do for us is to make us feel less alone.

Article originally appeared on September 10, 2020 on Bezzy’s sister site, Healthline. Last medically reviewed on September 14, 2020.