Oh boy, this isn’t a pretty blog post today. Scroll on past if this isn’t your thing! I know I can be an over-sharer, but I actually find it helpful to me. Some people will say “keep that crap to yourself” and that’s ok, but personally I like to share – it makes me feel a bit better and a bit lighter…

So I’ve had Crohn’s Disease for almost 22 years. I’ve had some ups and downs. I have some healthy times and some shitty times (haha, good pun!). I’m not embarrassed about it, nor do I ever want people to feel sorry for me. It is what it is and I want to live my true life (not just the pretty pictures you see on Instagram or this blog). Plus I decided to be a national ambassador for Crohn’s and Colitis Australia back in 2012, so I feel pretty passionate about sharing my story in the hope that maybe someone else who is struggling with this invisible illness doesn’t feel so alone, or down in the dumps.

Now that I’ve got the justification of why I share out of the way…

Last week I headed to North Shore Private Hospital to have an MRI, colonoscopy, endoscopy and iron infusion. Long story short, I have been to hospital I think 9 times in 18 months to have abscesses flushed and IV antibiotics. I have lost some weight, become anemic and I am generally unwell.

I knew that colostomy surgery was inevitable and I am ok with that. It’s a pretty common operation, and after 22 years I knew that having a bag was on the cards.

Before anyone mentions that I should change my diet (!), I don’t have crohn’s higher in my bowel. I used to. But over the last few years I have suffered from perianal crohn’s. I have irreversible damage, unforgiving abscesses and a lot of setons in situ.

So here’s what I am having done in the next few months… I’m having a proctecomy and colostomy surgery. It’s a bloody big operation and I am not feeling so great about this one. Google if you have to, but it’s not glamorous. It’s pretty foul actually and I am not rapt about it. It means two weeks in a Sydney hospital and a few months recovery. The bottom line is that I will no longer have a rectum, I’ll be sewn up and the diseased area will be gone. I know I need this to happen. And I am sure by this time next year I will be so glad it’s done. It’s permanent, so this is fully life changing.

I am yet to discuss all the finer details and timings with my surgeon. I know it will be done some time within the next 6 months. I am hoping for early next year. I am still getting my head around it all. BUT I AM OK. I really am.

I have read and researched this over and over. I do have a lot of questions for my surgeon but I will work it all out.

I have thought more about the pros of having this done than the cons…

Here are some pros –

  • I can leave my house for more than a few hours at a time without worrying about where the toilets are
  • I can go camping with my boys
  • I will spend less on toilet paper (I think I’ll buy myself a bunch of flowers every week with that extra money as a treat!)
  • I won’t be caught in situations where I have to get home to shower in the day because I can’t hold it as well as I used to
  • I will hopefully have more energy
  • I can be more hydrated with less dry skin
  • I will no longer live on panadol to bring my low-grade temp down every day

I think they are pretty worthy pros. I am sure after all these years I deserve to feel a little better.

My husband is the best human alive. He really is. I don’t know how I got so lucky. I believe he was sent to look after me. He does not bat an eyelid and takes on more than most blokes. I am so grateful.

Anyway, thanks for reading if you’re still here. I also hope I haven’t scared anyone who may be struggling with Crohn’s! Because everyone’s disease is different, so I don’t want everyone to think this will happen to them. Because it doesn’t. I get emails and messages all the time from people with Crohn’s suffering through their own symptoms. I just want people who have this nasty disease to feel a little comfort in knowing that yes it’s a struggle, but managing it and living a full life can also be done.

Thanks for reading today. ♥ KC.