What I’ve Learned From Having Crohn’s Disease And An Ileostomy

Hello again, SecuriCare blog readers!

I’m back again, this time to discuss what I’ve learned from having Crohn’s and an ileostomy. Since I was diagnosed with Crohn’s 10 years ago and then had my ileostomy 2 years ago, I’ve learned so much about myself. So I thought I’d share my thoughts on these learnings in the hopes of giving some insight to anyone newly diagnosed or who might need an ostomy in the future.

The limbo of diagnosis is tough, but the relief of diagnosis is so worth it.

Going through sudden severe illness or a long period of symptoms without diagnosis then the barrage of tests, potential diagnosis and waiting in between appointments or meeting your doctors can make this the hardest time of your life so far. The hard times will be worth it though when you finally get diagnosed and can be started on a treatment which will make you feel better than you have in a long time!

Choosing a care plan that is right for you is so important.

If, like myself, you want to try every possible medication on the market and be involved in every trial before you get surgery, then make sure your team know this. Everyone is different and your team are there to do what will make your life easiest. I really can’t stress enough how important it is to make your wishes known so that you get a care plan that fits around your life.

Going through puberty when chronically ill is a rollercoaster of emotions.

I found growing up hard after I was diagnosed at 13. I felt very alienated from my peers because, instead of boy trouble, I had worries about my next treatment option. I think it is very important for kids who have been diagnosed to have a chance to just be kids. Let them spend time talking to friends, go to school when possible and just have the opportunity to be around people their own age - the distraction of typical teenage worries can actually be a good thing.

Your body can, and will, change a lot!

I’ve been everything from a size 4 to a size 20 over the last 10 years, thanks to steroids and flare-ups. I used to have a bad relationship with my body but, with getting my ileostomy and proctectomy (which meant gaining a stoma bag and a large scar) made me love my body for going through so much and still carrying on working. Having a bag for life might not be the accessory most people would choose but I love mine!

There’s nothing scarier than the fear of the unknown.

Before both of my surgeries, I was terrified of everything that could happen - from pain levels to how I’d look afterwards. It kept me up at night worrying until my surgeries were done. Now that I’ve recovered, despite some wound healing complications, I can safely say that nothing in my IBD journey has ever been as bad as I’ve imagined it and I’d go through all the surgery again to have the quality of life I’m now on my way to achieving.

Bag leaks are an inevitable part of ostomy life.

This might sound horrific to those of you without an ostomy but, honestly, 95% of the time these leaks are extremely minor and only require a quick bag change. It can be disheartening at first but, with the variety of ostomy products available to you, once you know your favourites, you’ll be so much more in control. If your leaks are frequent, it’s worth getting checked out by your stoma care nurse – there are lots of ways to get those leaks to stop and the reason for them might be something really simple like having gained or lost weight.

Sometimes you can do things you never thought possible.

I won’t lie, there are times when it’s difficult having a chronic illness. But when you’re feeling well you appreciate being able to do so many things you’ve never experienced. Since getting my ileostomy I’ve been able to travel, go to nightclubs and attend university. It really can give you your life back!

Life can sometimes take a detour.

Life with a chronic illness can mean you have to take time out of jobs or education. This can be extremely hard to deal with at the time but it can ultimately provide the motivation to reach your goals. My favourite saying is that; “no matter how far away your goal is, you’ll appreciate the journey.”

These are just a few of the things I’ve learned during my life so far with IBD and an ostomy. It isn’t exactly the life I planned - but hopefully this gives you my perspective on things. Above all, my advice is: never take the good times for granted!

See you next time,

Jen