I just want to start by saying thank you to everyone who messaged me over the last few weeks. Your support has been wonderful and it really helped. If you’re new to this blog I’ve written a few posts here, but just quickly, I’ve had Crohn’s Disease since I was 18 years old, have battled with it a lot in the last 2 years (more than usual) and just over 2 weeks ago I had permanent colostomy surgery. Yeah, it was big…
But if you’ve just found me via a google search then I am sure you’re keen to read about my experience? If you often come to my blog for interior design, then maybe this blog post isn’t for you! Which I am cool with, so I’m happy for you to click away now. 🙂 But for me, it’s just what makes up my life, and yes I’ve spent a lot of time hanging in hospitals recently. I think in the last 2 years I’ve had 14 anesthetics…. horror!! Yep, it hasn’t been easy, BUT I am now out the other side!
You might be wondering what led me to this decision? Well basically I had no choice. I was in no position to fix this with diet and happy healing. I was in a terrible place with a huge part of my sigmoid colon full of disease and irreparable damage. This was not a decision I took lightly. I made it based on my future and my quality of life. I could not fix the issue (without giving you gory details!) and I could not stay the way I was. I spent 2 years with an infection through my body which no amount of antibiotics, or good eating, would fix it.
I’ve spent the majority of this year bedridden. And until you’ve been bedridden you have no idea how debilitating life becomes. I could get up for a couple of hours a day here and there. I always put on a brave face and tried to get on with it, but it was hard. I have 3 kids, so they needed me as well.
So at the end of last year I decided (well my surgeon nodded and said I needed it!) with my husband that a permanent colostomy bag was the answer. It’s not a cure for Crohn’s disease, but the only way to feel better right now was to take out that part of my bowel. If you’re wondering who my doctors are I see Dr Stephen Tattersall (Gastro) and Dr Justin Evans (Colorectal Surgeon) in Sydney. They are excellent.
Anyway, just over 2 weeks ago my husband and I headed to Sydney. My Mum came to stay with the boys at our house. I wasn’t nervous initially. I just wanted it all done! I started drinking the awful prep in a motel room the night before the surgery and I can say that doing that was actually worse than my surgery. I’m serious! I do not do well with that prep. It’s vicious. My bowel was so damaged that it’s painful, I vomit, I shake and I barely got through it. My husband was frightened he said he thought I was going to die! Anyway, obviously I got through it. But I felt like I’d been hit by a truck and I was so tired and exhausted when I went in to my surgery. Months of feeling terrible and hardly eating didn’t help.
I became anxious laying on the bed waiting for the doctor and nurses to prep everything around me before the surgery. I was teary. I was frightened because I was worried I’d wake up with a more drastic operation or there would be a drama. I felt this way because my surgeon couldn’t be sure either until he actually got in there. In the end the anesthetist said how about we just put you off to sleep right now? Ha! Yes thank you!
3 hours later it was over and I remember seeing my husband’s face. He said everything was good. Of course I start crying, but I am drugged up and not feeling any pain. I had 15cm of diseased bowel removed, a new stoma and felt like I’d had a baby (because they’d opened my cesarean scar again – ouch!!).
The first 3 days are a blur. I had a pain button with morphine and I know I used that often! 24 hours after surgery I did get up and walk around with the physio. It was very painful, but I was determined to be out of that hospital within a week.
I was still on a liquid diet for a few days. Your stoma doesn’t become “active” for a few days. As in, your bowel won’t start working straight away. I actually didn’t know this. By about day 5 it still wasn’t working, so I started taking some softeners. Day 6 it still wasn’t working and now I was in pain and needed endone! Eventually there was some slight movement and enough for me to go home on day 7.
If I am honest I did find looking at my stoma and changing the bag very distressing just for those first couple of times. I knew what to expect from looking at photos, but it’s still a shock when it’s on your body. I won’t give you all the details on this because it’s gross (haha!), but I will say that 2 weeks on I now feel pretty good about it.
I said to my Mum “I guess it’s like a scary movie… the first time you watch it it will frighten the crap out of you, but if you watch it over and over you’d be like, oh that old thing!” So this is how I’ve been thinking of it. The more I get used to it, the easier it’s become.
I will say that overall it’s not been nearly as hard or as awful as I had imagined. It’s not been as difficult to manage. I’ve had no hiccups, no dramas and I have been happy to just get on with it.
I am still to find the right routine for me (and my bowel!), and I am still to find the right “bag”. I don’t have that sorted just yet. I am not trying to focus on that though, I’m just focusing on managing it for now.
My energy levels are through the roof because the infection has gone (I am not freezing anymore, or sweating, or have swollen ankles or thirsty). Which is weird for me! Maybe they aren’t at the levels of a healthy person just yet, but for me they are amazing. I am starving ALL the time. Which is good, because I have lost a lot of weight. I need to put some back on and I can’t wait to be out and about more often. Like I said earlier being bedridden has held me back.
I am looking forward to the future. I already feel so good and can’t wait to get back in to the world. Things I haven’t been able to do for years are now back on my list. Even being able to walk around the shops without worrying about the toilet is exciting for me. Tomorrow I am heading off to a New Moon Ceremony! I never would have been able to do workshops previously. My bestie and I are booking workshops left and right and looking for fun events to go to already. 🙂
I’m also going to find a new job. I have been wanting to do something for a long time but never could. But now I think I can. I no have idea what/where, but just the thought of having that freedom is exciting.
So, here’s my word advice to anyone who is not sure about this surgery (and of course everyone is different), but for me I can already say this is the best thing ever. This has already changed my life and maybe I should have done this years ago! I know it’s been a process for me but I am sure it’s made me stronger.
My family have been amazing. I am lucky. My husband is the best human alive. We’ve been married 18 years and I cannot fault him ever. My 3 boys have had to deal with some weird stuff over the years. I hope they have learnt empathy from all of this. They haven’t been frightened, they just deal with it. We laugh about my bag all the time because it can make some random unpredictable noises haha!!
I also have to thank my wonderful friends who just took over with my kids. Picking them up, dropping them places and caring for them has been such a blessing. We’ve never had so much food in the house because people are so generous and helpful.
Today I am off to watch some cricket, get the groceries and stalk around Facebook for some workshops I can attend in Wagga over the next few months. Hit me up with anything if you know of one!
Thanks again guys. I am lucky I have a great online support network. I also hope to help anyone else in the same spot me. Please feel free to reach out to me anytime if you need a hand. I have some lovely online friends who also have a stoma who have been helping me. I am grateful for that!