I was going to write a post yesterday but I didn’t really feel in the right mind set to do so. But I’m feeling much better and a lot more positive today and ready to write about meeting with my surgeon yesterday.
Well, actually. We arrived at the hospital for my 9am appointment but the surgeon who was there throughout my surgery was not available, therefore I spoke to a doctor I’d never met before. Not exactly practical as he didn’t really understand everything that had gone on with my procedure, the fact it was emergency etc.
Any how, most of you will know I have an Ileostomy. Although it is not a loop Ileostomy, I was told there was a chance of reversing the stoma. Of course, that may come as good news to a lot of people who don’t like having a stoma. And when I was first told this, it was my end goal to my recovery. But having my stoma has changed my life. I’m in no more pain, I’m more active, I’m putting on weight more easily and I’m not relying on things like laxatives.
So, yesterdays appointment was to discuss a reversal surgery. I had of course researched it myself and spoken to others who have had reversals. As well as people that have actually decided to put off a reversal surgery due to the fact they are now living pain free. My research and conversations had left me feeling a little confused about the whole thing. There are so many risks in the operation, and chances that the reversal can go terribly wrong. There are also chances of having to have a new stoma formed, alongside having further problems with my bowel after it being reversed. I appreciate every case is different. Some people have some of their large bowel left and others have their rectum removed meaning a J-Pouch is formed. For me, my whole colon was removed. And a length of my rectum was kept. Meaning the procedure would entail my small bowel being reconnected to my rectum. Please don’t quote me on this, as I’m still not completely aware of what the whole procedure entails. I’m just piecing together what I was able to take in by the doctor.
Of course, I’d heard some horror stories about the operation. And I questioned these with the doctor. I asked him the pros and the cons of a reversal. I asked him of the main benefits. But funnily enough, although not having to worry about your bag may seem like a positive, that seems to be the only one. The rest just feels like a bit of a downfall to me. He told me the main benefit was that I would not have a stoma, and I would not have to wear an ileostomy bag. That was it. He said that for a lot of people, that is a huge benefit as they really do not like their stoma.
The consequence for me not having a stoma, and to have the reversal, means I would never be able to go to the toilet “normally” again. Meaning I’d live the rest of my life having diarrhea. Controlled by 3 types of medication daily. I’d be at risk of accidents and it would take a while for my bowel to adjust to yet another change in my body. In fact, the bowel may never completely adjust again. There’s a chance I can become worse with a reversal, meaning I’d have to have another stoma put in afterwards. And they would completely cut out my rectum and stitch me up to give me a permanent Ostomy.
The scary part of all of this is that it’s MY decision. When I first had my stoma formed it was by emergency surgery. I had no choice. But now I’ve been given all of this to weigh out in my head to come to some sort of decision of how I want to spend the rest of my life. I have to contemplate all of the risks, and prepare myself to expect a number of situations. It’s completely terrifying.
I have no issue with my bag at all. The only problem I face at the moment is occasional leaks and itchy skin from time to time. All I have to worry about is ordering in new bags and changing them. It feels these are the only issues I’d be getting rid of by having a reversal. It’s a cosmetic choice more than anything. Carry on as I am, healthy, active, pain free. Or undergo more surgery to not have to carry around my ileostomy bag on my stomach. Rely on medication forever, deal with a bad stomach and use the toilet frequently. Risk all of this to perhaps just undergo another surgery for a stoma, meaning it wasn’t even worth the time.
All of this was spoken about in my appointment with the doctor. I felt quite downhearted about it all, I’d hoped there would be a bit more benefit to having a reversal. I know it’s different for everyone. I know some people who have had reversals are fine, I know some people don’t even get the chance to have a choice. And for that I apologise. I don’t want to be selfish nor pedantic but I also have to think about what’s best for me, physically, emotionally and mentally. Everyone deals with things differently and I have been able to deal with my stoma well. I don’t want to fall 2 steps back and make a decision that I may not cope with in the future.
The doctor could see I didn’t know where my head was at, so told me to return in 6 months. I feel happy to do that. I’m happy with my life right now, and how I feel physically. I don’t feel insecure and am learning more and more about myself each day. I owe my life to my stoma and I don’t want to make any rash decisions to change that. I want to think properly and learn more about the procedure and the outcome. I’m not going to change my body to become more pleasing on the eye to some people. I’m more concerned with how I feel inside. Feeling healthy, and good about myself.
I know this post doesn’t explain much. But I thought writing it all out would possibly give me some point of direction. And it kinda has. I just want to stay the same right now. I’m finally healthy. I’m finally non reliant on pills and I’m finally not worrying about being in the bathroom 24/7. Having a stoma has made me so much more open minded and it has helped me embrace my body. It’s helped show me what I love about my body, and has stopped me focusing on the flaws. It’s not worth even thinking about change right now. Not now I’m where I’m happy being. No matter what anyone else thinks about the decision I make, it’s mine to make. And for the time being, that decision is to live my life being pain free, happy and with the world at my feet.