While I envisioned this summer to be full of sunshine and surf trips, I was without warning catapulted back to the UK to face another two surgeries.
Unfortunately the part of my disease known as fistulating disease – explained in my previous post – Another Complication & Leaving Home – is back with a vengeance. For me this meant that the first abscess had diverted and was forming a new collection. The surgeons decided to go in and insert another seton stitch to allow it to drain. This was all good until almost immediately the abscess diverted again and I ended up with yet another collection. So two months later a third seton stitch was put in place. So unfortunately, despite the amazing weather, and our valiant attempt at the footballl world cup, my summer ended up pretty shitty. Pun intended.
To cut to the chase, if something isn’t done, this will just continue. The fistulas will spread, creating new abscesses and collections and with every surgery and added seton, I run the risk that I could become incontinent.
There is currently no medication to control this part of Crohn’s Disease that I haven’t already tried and had fail and spending 6 out of every 12 months in and out of hospital is far from ideal. I’ve lost three jobs, had to move back to the UK twice, and before I can even get my feet back on the ground it all starts over again. Currently the operations I’m having are not to fix the problem – its simply to slow down the rate of deterioration, and I’m tired of see-sawing between health and hospital.
So what are my options?
Well there’s two:
1.) Switch to a new medication, with absolutely no evidence of actually controlling fistulating disease in Crohn’s.
2.) Colostomy bag.
If you’d asked me 5 years ago, I probably would have hung onto some hope and given a new medication a shot, but I’m tired of being torn away from my friends, jobs and home for half a year at a time. Its not fair on anyone mentally to have the rug pulled from under your feet just as you settle in to having your life back to normal.
So at this point I’m pretty much set on a Colostomy bag. Its not pretty, but neither is the alternative.
So whats a Colostomy?
A colostomy is created when a large intestine is brought through the abdominal wall, creating a stoma. Waste is them collected in a bag which is changed 2/3 times a day.
By diverting the healthy part of my colon, the bottom part, with the fistulating disease, doesn’t have the waste passing through it that is currently causing reinfection and collections. This means it has a much better chance of healing.
So yeah basically I’m gunna poop in a bag now.
I’m hoping that this operation is going to give me some new found freedom, and allow me to live a life as close to normal as possible. If you’d asked me when I was first diagnosed with Crohn’s how I felt about the possibility of a bag, I would have told you that it was my worst nightmare and I’d sooner jump off a bridge than walk into the surgeons office, but life changes. Now my quality of life is being affected in a way that medication alone doesn’t have the answer for. I wouldn’t really say this was a choice I’m making here as there isn’t really a viable alternative, but its going to be a choice whether or not I get on and live my life to the full with this new adjustment. I really think I’m being given an amazing opportunity to live a much more stable life and do things I didn’t think would be possible while living with this disease. While no-one can guarantee there won’t be complications, I think this will really be my best shot at an active, somewhat uninterrupted life.
As usual, I’m do my very best to find the silver linings of every shitty situation, and this is no exception. So I complied a nifty list of….unexpected perks… in the bagging area..??
1. Never have to take a shit in a festival toilet again
2. Can’t possibly be blamed for farts.
3. Built in wanker repellent when dating (or making friends)
4. Save money on loo roll
5. Can literally take a shit on the dance floor of a nightclub and get away with it.
If any other’s spring to mind, i’ll be sure to let you all know.
Dealing with this change…
I think my biggest challenge through all of this next chapter of adjusting to life with a bag is going to be my body confidence. Thankfully in recent years there has been more media coverage and public awareness for Ostomy bags but it still isn’t going to be particularly easy.
The results of my past few operation have had me struggling with my confidence too but I’ve started to learn that after every operation I am waking up with a new body, with a new feature and new limitations. So I have to apply this to this next operation. Its all going to be brand new, theres nothing I can do about it, but I’m here to embrace it. This is me, it always has been, and it always will be. We are all constantly changing and developing as people, and I guess I always knew this – I just never thought it would be so obvious and sudden.
At times like this I look back at what my body has been through in the last five years, surgeries, chemotherapy medications, steroids and more. My body has become so much more than I ever believed it could. I personally, like many others, spent every waking minute of my teenage years hating every inch of my body. If I’m completely honest, some days I still do. But this body has fought and carried me every step of this journey so far, and I no longer just look upon it as just a vessel prized for its beauty but instead as a miracle – unwavering, steadfast and yet so incredibly adaptable. My immune system might have waged war against my own colon, but these thunder thighs? They just keep walking.
So I’d like to leave this post with three sexy as fuck women that keep my believing that life with a bag is nothing to be shy about!