It has been an eventful and unpleasant week.
This Tuesday, I got a call from a stoma nurse. She said she didn’t know how I got on her list, or why I was on there so late. (It turned out that I had been referred to another hospital closer (different PCT) but they had ignored it. My hospital didn't inform me they were referring me elsewhere and the other PCT didn't contact me at all!)
She said she needed me to come in for her to site a stoma. I blew up at this saying I’d been told I was having an internal pouch, not an external bag with stoma. This confused her. I told her that no one had sat down and explained the op and it’s risks, I've found it all this out for myself. (Luckily I’ve met up with some girls who’ve had this done and they’ve been great).
This prompted a call from the consultants’ secretary telling me to come in at 5pm the following night to speak to my consultant. This was on Friday 10th, my op was due 3 days later on the 13th. Then the stoma nurse phoned back and asked me to come in (to another building across the city) at 4pm to have the stoma sited, in case pouch goes wrong. But it seemed to me they were leaning towards the bag option. I wasn't happy at not being consulted. I'd given up ringing the hospital as I was sick of their stone-walling.
Last night, I saw the stoma nurse, who marked out a site in case I do have a bag. She gave me a practice kit, some reading material and a DVD about it all. I have to go around with a fake stoma and bag filled with water this weekend to get used to it in case I have it. (I've taken some pictures of the kit, and with it on, will post them a later date).
Next, I went to the general hospital to see my consultant. He said there is a small chance having a bag (Ileal conduit) but he'll do all he can to avoid that option. He wanted to leave the Urethra and Trigone in, which I was against. I said I wanted it all out because:
- That’s the part that hurts the most, and I think it has too much damage with all the catheterisation to warrant saving.
- I’ve heard from some patients that the disease can spread to the new pouch, and it makes sense to me to get rid of all the damaged tissue.
On the first point he thinks the pain I feel at the base is referred pain from the rest of the bladder, and there is a large concentration of nerves at the base.
He wasn’t convinced on the second point. He said that the Trigone is made from different embryonic tissue to that of the bladder so the disease shouldn’t have spread to the Trigone, and that IC is not believed to be an infective disease. (NB. There are as many theories as there are urologists.) He's going to do a Cystoscopy first to see how much damage there is and decide then whether to keep it or remove it. He knows I’d rather the whole lot is removed.
Ideally what he wants to do is a Neobladder. If that is not possible, he will make a Mitrofanoff. If neither of those are do-able then it will be an Ileal conduit. I can still have children with any of these options, although there is a risk of infertility if they inadvertently damage the ovaries, womb or fallopian tubes. I should be in for 10 to 14 days.
So that's it! I go in at 3pm tomorrow. I'll post again as soon as I can.
