“So the decision is made? I’ll book you in for another ostomy”
Yep, the decision is made. This journey that started 2 years and 2 months ago when I had my colon removed and an ileostomy formed, is coming full circle and in early 2016, I will be going back under the knife and having a permanent stoma formed. They will remove my Jpouch and make an ostomy from my small intestine and I will once again, have a bag. Though, this time it will be a bag for life. (Not the Tesco kind…)
I am still in hospital recovering from this latest bout of pouchitis and this week I have had to make some tough decisions. Do we continue to fight fires and keep having medication, hospital stays, exhaustion and generally spending 20% of my day on the toilet? Or do we go back to the ileostomy.
I’ve had to be quite logical and unemotional about it all, thinking in terms of quality of life, work, family and prognosis of the jpouch. I have been listing pros and cons till the early hours of the morning, imagining life with a stoma versus life with a Jpouch and all that comes with both scenarios. I have googled my heart out and spoken to Timm, the kids and to my fabulous consultant Mr Brown.
And I have made the decision. I’m booked on the urgent list for a pouch excisionand permanent stoma. There will be no going back from this, I believe I’ll have the full on Barbie Butt! I feel relief in this decision, I know it is the right thing for me. The pouch is fantastic for some people, but for me, it isn’t working.
Only now, as I sit on the hospital ward, the lights dimmed and only the gentle hum of machines and whispers of nurses at their station, I feel very alone and very emotional.
This isn’t fair.
That’s how I feel. Like a bratty toddler. That I never signed up for a life of illness and surgeries. I don’t want to live with a bloody ostomy bag stuck to me. I don’t want to spend so much time in hospitals. I don’t want to have to make life altering decisions that seem to have two crap endings. I don’t want to worry about being a burden to my family. I don’t want to be sick.
And you know what, I’m totally allowing myself this rant. I think I’m entirely entitled to feel shit about all this. It’s ok for me to have a cry and feel sorry for myself. Because this is all not fair.
It’s not fair that I’m looking at my fourth surgery in three years. It’s not fair that I have this illness, these complications. It’s not fair that my three kids are now used to seeing me in a hospital bed. It’s not fair that my husband has the options of a wife who shits herself or a wife with an ostomy bag.
I have no positive spin today. No fun little meme with a quote by the Dalai Lama.
Nope, I have pain. Raw, emotional, angry pain. And that’s ok.
Sometimes life throws absolute crap at you, we have to deal with rubbish situations that are difficult and make you sad and angry. Sometimes shit happens. And it is completely fine to not be ok with that.
Accept your sadness. Revel in your anger. Acknowledge your pain.
Tomorrow is a new day and we can figure out the positive shit then…