Series | How my ulcerative colitis impacted my family planning

This is part of a series about how my ulcerative colitis impacted different parts of my life. This is not my usual type of post. There are no tips, learnings, or useful bits of IBD information.

These are simply the raw and honest thoughts that I have when I’m feeling a bit annoyed with my life. Times when the fatigue gets too much, I’m stuck indoors, or I’m laid awake at night. I’m sharing this with you simply because I want you to know that you are not alone.

What would my life be like without UC?

I can’t help but wonder what my life might have been like if I didn’t have ulcerative colitis. I think about all of the things that would have been different, and then I wonder how much different, or better my life would be now.

I always imagined I’d have an ordinary life. I’d get married, have a house, have a child. I never imagined that life wouldn’t go that way.

I thought I'd be healed and normal after surgery

My ulcerative colitis and stoma surgery soon after didn’t make me think any different. I was under the impression that I was still normal, and would lead a normal life. I already knew that a reversal was possible, so I’d assumed life would be exactly the same as it had been pre-diagnosis. After all, I had been told that having my colon removed would cure my UC, so once I had no bag, I would be the same person, right?

I was in a relationship when I was diagnosed and had surgery, but it was very new. We were only three months in, so I’d given him his get out of jail free card at the time. He didn’t want to, so that was good news for me!

The impact of a j-pouch on fertility

I went for my first follow up appointment with my surgeon a few months later, and I only had one question. “When will my reversal be?” It was only then that I found out that a reversal wasn’t simple. I needed a j-pouch first...

The surgeon said that the j-pouch would likely impact my fertility, so if I wanted a family, then it was best to do that first. I was floored by this revelation. I was 19 years old. I wasn’t expecting to be a mum for another few years. That was MY PLAN.

The stress of life with a stoma

But, I didn’t want to live with the stoma either. It was awful. It limited my life. I don’t mind admitting that the stress of life with a stoma was partly due to vanity. I didn’t want to wear boys' clothes and to feel unattractive for any longer than I really had to. I didn’t want to deal with leaks and burnt skin all of the time, because it made me not want to leave the house!

The surgeon said that my chances of conceiving after the surgery were around 30% or 0%. Not between 30% and 0%. One, or the other. This is because they’re working around the fallopian tubes, and damage, scarring, and adhesions can be a result.

Never having a family was not something I was willing to accept, so my and partner decided it was better to try then than to go without.

I did become pregnant, but then I miscarried. It was an awful experience, and it was one that I couldn’t imagine repeating. The thought of that loss again was too much for my little heart to handle. I didn’t want to try again, partly because of the fear of another loss, and partly because just trying was hard.

Grief around pregnancy and the decision for surgery

Each month when my period came, I cried. Grieving for something I’d never even had. I knew I wasn’t strong enough to do it again, so I opted to go for the j-pouch surgery. I thought, at least I could live my life again then.

I often think about how my decision may have been different if I’d been older, if my relationship felt more stable, and if it hadn’t been such a whirlwind of diagnosis and then surgery. If I’d been better able to access support to deal with my stoma, so I felt less isolated and more able to manage... But, it was what it was, and I made a decision that was right for me at the time.

I split with that partner a few years later. We’d had a lot of issues, so children hadn’t really even been a consideration. I dated, and it was a few years later that I found my current partner.

The decision to not have children

I‘d decided at that point that children weren’t for me. My health was so frequently poor that I’d probably make a rubbish mum anyway. I didn’t want them. It was too much hard work.

I had a j-pouch revision after, obviously all in the same area, and it was confirmed after that surgery that everything in there is stuck together. Then, I had the j-pouch out, again, it was tricky because of the adhesions and scar tissue from the previous surgeries. My ureters are stuck to my bowel, which I found out when I had ureteral stents put in pre-pouch excision.

Even now, the impact on fertility is far from crystal clear. Some studies suggest that laparoscopic surgery lessens the chances of infertility, but you get different statistics from different studies. Some say around 50% of women are infertile after open j-pouch surgery.

Will I be able to get pregnant after a j-pouch?

In my head, there’s no chance, but I don’t know for certain. Not knowing is hard, but I feel like knowing may be harder. I don't want to have to try for 12 months before someone will refer me for any tests - that’s how our healthcare system works. I don’t feel strong enough.

I don’t want someone to tell me that I can't. That I’m broken. That I can't do the one thing that the female of the species is actually supposed to do. And so, I just go without, because that seems easier. Always telling myself that I don’t think I want children anyway.

I honestly don’t know where I’d be if I didn’t have UC, but I do often wonder. I feel like I gave up my chance to be a mum when I chose to have a j-pouch, for reasons such as vanity. I know that’s not a choice I’d have made now. The fact I now live with a stoma anyway is a little more soul-destroying. I gave up my chance, for nothing, and I don’t like myself for that.