When I was first faced with IBD I chose to ignore the worst case scenario out of fear. I was so stubborn and terrified of being sliced open that I didn’t want to admit that surgery could be a possibility for me. I’m a planner you see, and surgery is something that I have thought about a lot in the recent months; it could be months or years away or I might escape that fate altogether, but it is something I want to prepare myself for regardless if I undergo it at all.
But my colitis is very angry.
I’ve been doing some very aggressive drug therapy for the last year and as my doc said to me last time I saw him, I should be in remission. I’ve been wrestling with steroids and have been off and on them more times than I can actually remember. I’ve been through azathioprine and methotrexate. I started IV therapy that was supposed to be for a year, but now looks like it could be foreseeable future! And almost a year on I’m still not in remission.
My doc has given me everything under the sun to stop the civil war my body has subjected me to and it continues to fight back!
There are always pros and cons to every decision and surgery isn’t something that should be taken upon lightly. Surgery could be needed if you don’t respond to the drug therapy, if there are emergency issues and the patient is in a dangerous position, or if there is precancerous or developing cancer in the large bowel.
The surgery for UC isn’t just one procedure, it can be two or three but these can vary depending on the surgeon, the patient and how quickly surgery is needed. The first operation can be around 7-8 hours and they do a Subtotal Colectomy; this is the most common type of surgery for colitis and they remove the colon but leave the rectum. The surgeon makes an opening for an ileostomy to poke out of the abdomen and an external bag is fitted to catch waste (stoma); the stoma is usually temporary but can become permanent. The second operation is to create a J-Pouch. A pouch is made using the lower end of the small intestine (ileum) and is joined to the anus. The pouch is designed as a reservoir in order for stools to be passed normally. It usually takes around 3 months for the pouch to heal and become fully functional. The third and final op is to close up the ileostomy so the pouch can be used. The J-Pouches have roughly an 80% success rate but obviously with all kinds of surgery there can be complications.
But before I really did any research on the surgeries, every single time I walked into my doctors office I was so frightened that my consultant would turn around and say ‘drug therapy isn’t working’ and (for want of a better phrase) I was ultimately f*cked. I would panic and stress and get so upset because at that point in my life surgery was the worst thing in the world. Every time I thought about it my chest would tighten, my throat would hurt and my head would spin! For me, surgery was giving in to my colitis and letting it beat me; I wanted to be stronger than my illness and to let them cut my colon out was giving up. I didn’t want a bag and didn’t want to spend, what would basically be a year of my life, in a hospital or recovering from surgery.
But this all changed a month ago.
I researched it throughout an inch of its life and I started to realise how, even though it wouldn’t be an easy way out, I could stop panicking. I could ignore the sickening, tight twisted worry I got every time I stepped into hospital to tell my doc that I’m still feeling like shit. I took a breath and I realised that surgery isn’t the end of my life and getting a bag isn’t the worst thing in the world. I want drug therapy to work because it’s easier than having someone cut me open but at the same time, I’m bored of being too sick to be functional but not sick enough to be sat on my arse all day feeling sorry for myself.
Surgery is a huge decision and it wouldn’t just effect me but my family too, so I’m not about to walk into my next appointment with a ‘f*ck it! Cut me open’ attitude. But I don’t want to be wasting my time with drug therapy if it isn’t going to help me in the long run. It might not be an easy way out of this but it’s a huge weight off my shoulders to not be so terrified anymore. I have seen and followed so many people who have gone through the surgery for Crohn’s and Colitis and it is their show of strength that has helped me to not be so afraid of potentially being colonless. To see all those people on Facebook and Instagram, through blogs and vlogs, sharing how they got through the surgery makes me think that it isn’t giving up or giving into my illness anymore. To go through the surgeries will be tough, but if I can get through the last year then I can definitely get through that!
It’s a relief to not be afraid, but I’m certainly not going to let them come anywhere near me with a scalpel anytime soon!
(If you are thinking about surgery or want to find more info about how it all works then I would head to the Crohn’s and Colitis UK website or chat to your consultant! http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/surgery-for-ulcerative-colitis.pdf)
Because this is a serious topic, I thought I’d end this with something a little light hearted!
One thought on “An End To This Civil War.”
Well, it wasn’t an easy decision but I got sick of being sick (and “failed” 3 biologics) and had my surgery in October–it will be a permanent ileostomy as my UC (Surprise!) turned out to be Crohn’s Colitis after all. I had a great Christmas–truly magical–because I wasn’t sick or tired. I feel better than I have in YEARS (even when I wasn’t “flaring” I was still inflamed and fatigued). You don’t have to have the j-pouch, you can do what I’ve decided to do and have a permanent ileostomy. It’s not as big of a deal as I thought. And I have my freedom back. Best wishes. XO, MLACS
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