Today is World Ostomy Day and this year’s theme is ‘Many Stories, One Voice’. Because of that, I wanted to share with you my Top Five Most Memorable Ostomy Moments from the last five years and seven months of living with two stomas.
There have been good times and bad times, but as I’ve said before:
5. “Surgery is the Only Option.”
When I heard those words back in 2010, I burst into tears. It is certainly one of my most memorable ostomy moments because it was the beginning of a very bumpy road to recovery. My Crohn’s disease had gotten so bad that the wall of my colon was extremely scarred and weakened. As a result, my colon perforated following a colonoscopy, so they really had no other option but to get in there and salvage what they could. Therefore, they performed a laparotomy and got busy!
4. Recovery Weight Gain… And Loss!
I was 5.5 stone when I had my ostomy surgery, so being 5’2” tall I looked absolutely tiny! So much so, that the other ladies on the ward thought I was supposed to be in the paediatric ward (to be fair, I did have my teddy with me… but come on, I was scared!)
I had been trying to gain weight for quite a few months until I had my surgery with no prevail but, as soon as I was given my ileostomy, I was able to gain weight very easily! In fact, by the second year of recovery, I had gained all the weight that I had lost (plus a lot more!)
I needed to find a way to get back down to a healthy weight. This raised a few concerns; can I eat fruit and vegetables with my new digestive re-plumbing? Would I be able to work out with an ostomy? Does it mean I can only do walking? Would I never be able to do those high intensity interval training workouts that I heard so many good things about? Well, I decided to start on the more cautious side and give Zumba a go. It was a lower impact (and FUN) workout, which was great for someone with a weak core, as well as someone as unfit as me!
Soon I progressed to Beachbody’s TurboFire but wanted to keep it low-impact so I started off modifying. But soon enough I was keeping up with all the people on the DVD! A combination of regular exercise and eating more fruit and vegetables (yes, I can eat vegetables with an ileostomy) and the weight was coming off easily!
However, as we all know, weight loss is a bumpy road, and life often gets in the way. The weight did eventually crawl back up, but at least I know that it’s not impossible to shift the pounds, and I can get it done! The important thing for me to stay motivated is that it’s not my ostomy bags that hold me back… it’s finding the will-power to stay consistent, just like anyone else (and saying no to pizza a bit more often)!
3. The London Leak
Oh man… this was certainly a memorable moment. It was the first time in a long time since I saw one of my old university friends and we decided that we’d meet up in London. I was at the train station with ten minutes to go until my train to Kings Cross arrived and suddenly I felt THAT feeling. A leak. The worst thing was, it was my secondary stoma – the one I don’t often carry spare supplies for because it was the ‘less important’ one… or so I thought! As I didn’t have any spare bags for it, I had to choose whether to bail or to just get on the train and think of something… WATCH THE VIDEO TO FIND OUT WHAT HAPPENED!
2. Getting Married
Exactly four-and-a-half years after my ostomy surgery, I was getting married to my soul mate. So many things to think about! Venue, rings, decorations, flowers, music and, of course, THE DRESS. The problem with poo is that it’s not exactly subtle, and the worst colour to wear if you’re worried about having a leak is white. However, I wanted to stay traditional and I knew I wanted either a white or ivory dress. So, I decided to just go for it; it was my wedding day and I knew I’d regret it if I compromised on something so important to the big day. As an avid online shopper, I actually ordered my wedding dress online; something I only recommend if you know exactly what shape dress suits you. I knew that A-line dresses were flattering to my curvy figure, and the added bonus of a poofy petticoat meant that, if either of my two ostomy bags did leak, there’d be a good few layers between the bags and the outer layer of my wedding dress to give me time to change them without soiling the dress. Needless to say, there were no leaks. The day went absolutely perfectly! See the wedding photos and watch the video here.
1. The First Night Home
(Warning: It’s a bit graphic!)
This has to be the most memorable moment, and even though it was so traumatic at the time, it actually put me in good stead for my recovery because all I kept saying to myself after this event was “the worst has already happened, it can’t get worse than that!”
I had gotten released from my hospital prison on a Sunday afternoon, after being in there for a month. I really, really wanted a meal from Burger King as my welcome home dinner. Well, let me tell you… that meal was one of the best meals I had ever had. It had been years since I’d enjoyed a meal that much, and it finished the day off perfectly… almost.
Within a few hours of me finishing my little banquet, I was just getting ready for bed when I realised that the bag had completely leaked INTO the open laparotomy wound. I was practically hysterical and I had no idea what to do. My Mum came in and it was the first time she’d seen the wound so she was also a bit panicky too. She rang the hospital ward that I was discharged from and they said to just wash it out with some saline solution and re-dress it… sounds easy when you’re a nurse, but not when you’re the patient having to do it yourself!
I rummaged around in the supplies they’d sent me home with earlier that day, and sure enough there were some swabs, some saline solution and a pack of the wound dressing they had been using on me in hospital. I also had my spare ostomy supplies, so I laid everything out on the bed around me within reaching distance. I had to do this laying down because the wound was so moist; if I’d been standing it’d have all dribbled out. Everything was ready, I just needed to get the confidence to actually start!
Having to change your own dressing for a wound that was 13cm long x 5cm wide x 3cm deep is one of the scariest things to do. I felt like I was in a scene of a war film. I was still on a crazy amount of painkillers, so it wasn’t the fact that it was painful that was upsetting, but it was the sensation of wiping a wet swab around the inside of your own abdomen; I cannot quite explain how that feels. Many hours (and tears) later, I managed to clean everything up, pack the wound, apply the dressing and put on the two ostomy bags.
After such a traumatic first night home, I was emotionally drained, as well as physically exhausted. But every single day after that event was a good day. The worst thing that could have happened, had happened. And while I still had a very long recovery (seven months), I felt as though every day was still a better day than the first night home.
That was five and a half years ago. Since then, I have gone back to work, gone out for meals with friends, watched movies and the cinema, travelled on a plane, been on rollercoasters, done a pin-up photoshoot, been a bridesmaid (twice), been a bride (once, hopefully!) and so many other things that any normal person might do in their lives.
Having ostomy surgery, no matter how complicated things may get, doesn’t mean you need to stop doing the things you want to do. And be proud of every single accomplishment, no matter how big or small it may be.
We only have one life; don’t be too afraid to live it.