As I sit here today, completely exhausted, I thought it would be a good time to break open the honesty jar.
I always talk about what a positive impact having a stoma has had, and it genuinely has. Life pre-stoma compared to now is so much better, and I am used to my new normal, but it’s not really normal is it?
Yesterday was a long day. I woke up late so I didn’t have time to shower. I figured I would just shower after work instead. I began work as usual, but an hour in I was feeling really itchy under my baseplate. I HAD to stop and take a shower so that I could change my bag. The rest of the day didn’t go to plan either. Noisy neighbours and the mowing of lawns meant I hadn’t been able to concentrate properly. I was annoyed and I was busy, which resulted in me finishing my work day 3 hours later than planned! It was only then that I realised I hadn’t had a drink for the last six hours! SIX, and I am usually so good at staying hydrated! It’s safe to say that I was frustrated with myself.
I made our evening meal and didn’t even consider that swapping out normal rice for cauliflower rice meant that my plate actually had nothing to bulk up my output… What was wrong with me?! All of these things that I am usually totally on top of, I wasn’t. The only thing I can conclude is that it was the result of being tired.
The lack of fluid throughout the day AND the exclusion of carbs from my dinner plate resulted in my ostomy bag filling rapidly with water, over and over again. Bed time came and went, and I was still dealing with the aftermath of my day. I was already really tired, which may be why my day went so wrong in the first place, and not being able to go to sleep tipped me over the edge. I sat in the bathroom and I had a little cry. I was thinking about how unfair it all felt. I was thinking about the things my stoma causes issues with. I was WISHING I was normal.
I did remind myself of what life was like pre-stoma and of all of the things it allows me to do; experience, and eat, that I couldn’t do before. But that led to me thinking about the many years I was fighting with Ulcerative Colitis, and then Pouchitis, and about the treatments and the side effects I had endured in an attempt to restore some form of normality… And again, I thought about how unfair that was.
I had my moment, I let it all out, and I felt a little better. There was no use letting the frustration take over, because I only have this life, and it’s better than it could have been and it’s a lot better than it has been in the past. It’s the only life I have to make the most of!
It’s not the first time I have felt upset and I am certain it won’t be the last. Sometimes, when I am really tired and I HAVE to change my bag, it makes me angry. When I have experienced periods of leaks and burnt skin, I have been incredibly frustrated and upset. When I have had a full bag and nowhere to empty it, I have been panicked. The list goes on.
When I sit and think about all of the additional considerations that I have to make because of my stoma, it seems like a lot.
I guess my point is simply that it’s OK to experience negative emotions about it. I would even go as far as to say that it is normal. It’s OK to be angry, upset, frustrated, or annoyed. It’s OK to be a little jealous of the people that don’t have these additional issues or considerations sometimes.
I do love my stoma. I love that it’s improved my quality of life tenfold. But, I don’t always like my stoma – and that’s OK!
If you are having a rough time with your ostomy and you want someone to chat to, you can find me on Facebook, Twitter, and Instagram – @sahara88uk. Plus, there are lots of Facebook groups for ostomates, and Colostomy UK has a fantastic support offering which includes a 24 hr helpline, LIVE chat, and Facebook group. Never feel like you have to suffer in silence!
Sahara was admitted to hospital and diagnosed with Ulcerative Colitis at the age of 19, after just two weeks of being incredibly unwell. One week later, she had emergency surgery to remove her colon and rectum, and had her first ileostomy. A turbulent journey followed; a multitude of treatments, complications, seven surgeries, a failed J-Pouch, and three ileostomies later, she is living with a permanent stoma and is a pro-active IBD and ostomy advocate.
Sahara joined the online IBD and ostomy community in 2014, and it very quickly became apparent to her that whilst awareness is important, even more important than that is providing support to others as they navigate the stormy waters of life with IBD, or an ostomy.
She runs #IBDSuperHeroes fundraising and awareness campaign, and the Facebook support group. She is a blogger for InflammatortyBowelDisease.net and an IBD Patient Consultant for merakoi – bridging the gap between patients and healthcare. She gets involved with research whenever she can, and is a volunteer for Cure Crohn’s Colitis, where she donates her time and expertise in social media marketing and content creation.