If you know me in real life, or you're a very avid reader of this blog, you know that my fiancé, Stephen, has Ulcerative Colitis. A few months ago, I did an entire post on my experience with the Crohns and Colitis "In My Shoes" App, which you can find here. Both that post, and this one were written with his consent and total collaboration.
Judging from that post, you all know that I massively love and support Stephen and his condition, and I'm super curious to understand what life is like for him.
Recently, Stephen had a major abdominal surgery called an ileostomy, which changed his life for the better. (He'll explain)
In my true curious nature, on the day that I'm writing this blog post, I am also wearing a stoma bag from 10am to 10am the next day. Stephen periodically filled my bag with a mixture of cornflower, flour, and water to replicate the 'weight' and consistency of the contents of my bag, so my thoughts on how that went for me will be after the Q&A.
So, Question 1) in the words of Hannah Witton, "what the heck is a stoma?"
A stoma is a little outlet, usually on the abdomen. The end of the digestive system (which may vary, depending on the kind of ostomy that you have), sticks out on the outside of your body. Consider it a new butthole. In my case, my stoma is the end of my small intestine because my large intestine was removed (total colectomy).
2) You chose to have your surgery instead of waiting for it to be classed as "emergency" (that was super brave, well done!) How did you know when it was time?
I'd been considering it since February, but I wanted to try the medication route first. The one medication that did work for me wasn't much of an answer as you're not allowed to stay on steroids for a long period of time. The only other medication which worked for me stopped working when my body developed antibodies against it, and caused me to go into anaphylactic shock on the 2nd dose of it. When all of that stopped working, I think I'd had enough.
Me: I noticed that you became increasingly annoyed and irritated when you had to get up to use the bathroom in the night, and you'd stopped tracking how often you were going and things like that. Do you feel that it took a toll on you mentally, and that helped you make your decision?
Stephen: Absolutely, yeah. By the end, it was just waiting for medications to kick in, which might have never actually worked at all. I was impatient, and frustrated by it. I didn't feel like being on all the medications was actually doing anything for me, but yet, knew I couldn't stop taking them and risk it all getting worse.
3) What does recovery look like for you?
Non-linear, for a start. Things are constantly two steps forward, and one step back. I had my surgery which was a number of steps forward, but then my digestive system decided to go on strike, during which I didn't have an appetite at all. I didn't want to eat. Everything I did eat would come back up again. That was getting better, and then I had a fever which set me back a little bit, but I bounced back from that. Bit(e) by bit(e), I was working food back into my diet. Now that I'm at home, it's going to be more about exercise and energy levels. There are going to be days where I'm going to accidentally overdo it and not realise and the next day, I'm going to suffer for it and may have to spend the whole day in bed. That's just what it's going to be like for a while, but it's about finding the balance and looking after myself. Knowing where my limits are, and when I need to rest.
4) What has your stoma taken away from you?
No more constant anxiety. I've got my concentration back, and peace in my mind? I'm not now constantly thinking about the next time I'll have to run to the bathroom, or if I need to go right now. There is currently still tension in my gut from surgery, but I'm not stressing out about it. I know that the tension isn't my next bowel movement threatening to erupt at any second. As a result, I've got a bit more headspace. I can daydream for the first time in 2 years.
It's also taken away being on about ten different medications that I had to take daily. I'm now only on two or three medications a day and most of them won't be long term at all, so I'm on my way to being medication free.
5) What would you say to someone who is considering having the surgery?
I am not in the place to advise anyone, because the nature of the condition is that every case is different, but I will say this. A lot of the advice you see online is overwhelmingly positive. Whilst I agree that this procedure has and will continue to change my life for the better, my experience so far has not been what I expected. I was advised that recovery in hospital would take 5-7 days; I was in for 3 weeks post-surgery. Things can and will go wrong and I'll admit there were days on the ward where I questioned whether or not the decision I made was the right one... and I'm sure one day in the future, when all the pain and suffering I went through is a distant memory, softened and dulled by time, all but forgotten, I may be changing my bag and questioning my choice again! Overall, having been home a few days, I'm already seeing a huge positive difference in my life and know that, for me, surgery was a necessary step.
My 24 hours with a stoma bag observations:
I bent down to put a cup of tea on the floor and it felt like I was bending over a giant plaster attached to my stomach, which was threatening to pull itself off the further I bent over it. It wouldn't have, since I know how much anti-adhesive spray is needed to remove it, but STILL.
I completely forgot that I was wearing it by the time I first went to use the bathroom and I was very confused that I had a bag attached to me. (Stephen said he had the opposite problem when he first had the surgery in that he was hyper-aware of the bag, and was worried about it flapping around while peeing)
After having the cornflower/flour/water mix in my bag, I was very curious about it and kept looking through the little clear panel to see what it all looked like. I also found that the bag moved more and hit against my stomach when I walked, the fuller it became - I found that interesting!
In terms of soreness and irritation, I did find it a little itchy the longer I wore the bag, and it was tricky to scratch exactly where I wanted because of the adhesive.
Before emptying the bag to go to sleep, I also lay down with a full bag to see what that's like. I was incredibly nervous about laying ON the bag, as I feared everything falling out, and even though that didn't happen, the fear was still real. I did lay directly on it just to experience it and it felt like laying on a squishy water balloon? It was perfectly comfortable apart from the slight tugging on the skin as I was leaning on the bag, but definitely something that would take some getting used to. For those of you who are curious, emptying the bag was quick and easy, but I imagine a cornflower and water mix IS easier to empty than actual poop.
At 10am yesterday morning, I used the anti-adhesive spray to remove the bag, and it was totally pain-free! The spray smells like peppermint so it's actually a very calming experience. As I've mentioned earlier in the post, this bag was ON. TIGHT. So I was a little nervous that the spray wouldn't be able to remove it, but it does, and it works incredibly well. I even had a little bit of cornflower mix in a circular pattern where my stoma would be, if I had one.
I'm SO happy I decided to do this. I learnt so much about Stephen's new body/life. I'm constantly looking for more ways to show Stephen that I support him, and that I'm trying my best to understand what life is like for him with his condition, so let me know if you have any more suggestions for other things I can do.
To conclude, I'm so proud of Stephen and the journey that he's been on, but I also wanted to just put this out there - if you've also had the surgery, and you're not as upbeat or positive about it as us, that's okay. You're valid. There's nothing wrong with you if you hate it, didn't want the surgery at all, or if it didn't change your life the way you wanted it to.
We both love watching Hannah Witton and have done long before her ileostomy, and while she's become an inspiration to many, including us, she has an entire video on how her life isn't better with a stoma. It saved her life, but that doesn't mean it's been easy. You don't have to be positive all the time.
I believe in you ❤
It's really interesting to look back and see how much has changed since you first interviewed me!