Having ostomy surgery is something not to be underestimated. It is major surgery and no story is the same. People have different experiences for needing surgery, having surgery and also recovering from surgery. Some people know their ostomy surgery is going ahead (planned surgery) whereas for some, when they wake up from surgery is the first time they’ve ever seen an ostomy. Understandably, this can be very daunting, whatever side of the coin you’re on!
I was very poorly for years before my surgery in 2011 due to severe Crohn’s Colitis. I went through many medications and treatments and became dependent on steroids. Even tapering my medication down by one milligram would throw me into a dangerous flare-up and leave me so poorly, feeling like I was never going to get better. Before my surgery was needed, I was on infusion treatments (Infliximab) between every 6-8 weeks for nearly a year, along with taking Azathioprine for some of that time too. Sadly, this treatment wasn’t successful.
At 19 years old, I had my surgery to form my permanent ileostomy. Now 31 years old, I thankfully haven’t relied on any maintenance medication for my Crohn’s Disease and have thankfully only experienced a few minor flare-ups, one requiring intravenous steroid treatment in hospital.
Having any organ/s removed is a pretty big deal, but what things did my ostomy take away from me? In today’s blog, I’m going to talk you through five of these things.
1. My large intestine, appendix, rectum & anus
My ostomy is permanent. My Crohn’s Disease was too severe in my rectum and anus to be able to save them. My bum has been medically sewn up so I don’t have a bumhole anymore meaning I can’t poo out of there ever again. I will pass my poop out of my ostomy forever into an ostomy bag. Because my large intestine is no longer in my body, my poop will come out in more of a liquid consistency as the large intestine is no longer there to absorb the water out of my poop back into my body. If you’ve had your large intestine out, your appendix will have come out with it as it’s attached to the end.
2. Constant pain
Having my ostomy hasn’t taken away all my problems but it has taken away constant pain and severe pain. Being able to have days without any pain at all is absolutely amazing and something I will never take for granted.
Surgery did create scar tissue (adhesions) which is very common which can be painful sometimes, but this pain is a walk in the park to deal with over Crohn’s flare-ups.
3. The closeness of me and my “best friend”
By “best friend”, I mean the toilet. Not a best friend by choice or a best friend anyone wants! Life before surgery revolved around the toilet and it wouldn’t be out of the ordinary to spend hours in the bathroom or have around twenty to thirty toilet trips a day when things were at their worst.
Now, of course I still need to use the toilet to pee and to empty my bag, but usually I empty my bag when I wee. This is usually between 3 - 4 empties per day unless I’m experiencing an increase in output/more liquid output consistency.
4. My hate of food and drink
My relationship with food and drink has been horrible at the worst times. I remember frequently not being able to smell or see food without instantly creasing over in agony and sometimes feeling sick, followed by rushing to the toilet. I used to dread meal times and avoid food where I could because of the relation to pain and feeling awful. Even drinks, especially cold drinks, would impact my stomach and leave me in pain.
At my worst, I avoided food for 12 weeks and found it really hard to take any nutritional supplements. It was after this that my Dad rushed me to hospital as I was in a great deal of agony and felt so poorly.
Now, although it took me over a year after surgery to develop a much better relationship with my diet, especially without fear, I thoroughly enjoy the food I can eat and do eat and the drinks too. When I’m going through periods where I feel poorly, my relationship with food does get affected, understandably.
5. Just existing
More than anything and arguably the most beneficial factor of having ostomy surgery is that it took away me just existing miserably in agony with no hope for the future. My ostomy saved my life by a few hours. This in itself is scary and a miracle at the same time. My ostomy has enabled me to live. It has enabled me to make good memories, enjoy life and also to do things that I didn’t even dare to dream of before because I thought I’d never be able.
Having an ostomy, for me, isn’t a walk in the park, but it’s one I can actually walk on thanks to my ostomy and I’ll forever be grateful for it saving my life, even on dark days.
Please note that this is not medical advice and that it’s just from my own experience and research only. As always, if you have any medical questions or concerns, it’s always best to speak to a medical professional.
Until next time,