So I just noticed I don't really have much info about my ostomy life on my profile, so instead of doing the sensible/easy thing and editing it, I'm going to add it to a blog. I was born with spina bifida, which in Latin means "split spine." This means I have damaged nerves in my spine and have limited control over anything below the damage. Mine is low but still means that I was born with no control over my bowels/bladder. Over the years, I had many operations to help these problems (artificial urethral sphincter & an ACE procedure, to name the two most applicable to this blog); however, I still found I had the same problems of blockages or uncontrollable flow.
As I got older, I knew things had to change. Okay, I wasn't ever going to be cured, but I needed to improve my quality of life. The consultants were happy to leave me as I was as long as I didn't complain. I had talked to a few people with my condition, and most of them had tried the ACE or gone straight for a colostomy, but they had so much more freedom than I had. After some research on them, that's when I decided I WANTED a colostomy.
My first step to getting a colostomy was to go to my consultant for nephrology, as my GP had never shown any interest in helping with my spina bifida; however, he was good for general help. When I went to the appointment, I didn't get to see him personally (which is common) but one of his team. I asked if they could ask my GP to make a referral after explaining the situation. The junior doctor then went to my consultant in the next room, and it seems there were very thin walls between the rooms, as I heard the conversation, and he ended it with "well, clearly if it's not working for him, he's just not doing it properly." But he still agreed to refer me. Not happy with this attitude, I knew my GP would be the one to make the referral, so I decided to make an appointment to make sure the consultant I was referred to knew the situation. To my shock, my GP understood (this was a first) and pointed out it wasn't up to the nephrologist to decide if I needed one or not, and told me a colorectal surgeon visited the practice once a month and he would make me an appointment.
So the day of the consult came. I was both nervous and excited, as this would be make or break. I made sure I thought through what I wanted to say (this was my first operation consult alone) and made sure the surgeon would understand where I was coming from. So I went in, we had a short chat (only around 30 minutes), and he told me he had looked at my case and listened to what I had to say and believed a colostomy would be of huge benefit in my life at the minute. I guess this moment was a moment of victory (I had finally taken control over my life) and of complete nerves. I had just fought to get something, but what if I was wrong? What if this wasn't going to make things better? Only time would tell.
So this was around summertime, and in the following months, I had an appointment to see a stoma nurse to talk through what it would be like and be given a look at the bags and a fake "stoma" to see how it would feel. The stoma nurse said I already had all the "tools" to deal with a stoma and didn't need any pre-op counseling, and then made me an appointment to go back to the consultant for a date for the operation and final preparations for December 9th.
In November, I received an "odd" letter from the consultant telling me he hadn't got my phone contact details and to contact his secretary with these as soon as possible. Not wanting to postpone anything, I got in touch as soon as possible, and his secretary then told me I wouldn't need the appointment on December 9th and that my pre-op medical would take place on November 23rd and my operation would be on December 8th. Wow, this was it! I had my date, and it was now or never. I passed my pre-op medical and then waited for the operation date.
I'm going to end this entry here. I know it's long, but I wanted to use it as much as a record for myself as a blog for you guys to read. :)
Note: I forgot to add I also had a bladder augmentation before this operation.
Sevensins
Oct 16, 2011 7:23 pm