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Thursday 9 February 2012

Mirtofanoff Operation

Hi,

I'm sorry I haven't posted for a while. It's been hectic.

I had my Mitrofanoff operation before Christmas.  The surgeon took the trigone and the entire urethra out. The operation was 10 and a half hours long. It over-ran by three hours as the trigone was very difficult to get out, and they had to cut through the vaginal wall to remove it (shudder). I won't lie, it was incredibly difficult. Harder than having the Neobladder. The morphine I'd been taking for the last nine months had made me very constipated and I "was full of rocks" as my surgeon bluntly put it! This made the pain so much worse, and nothing seemed to work for it except the PCA which I was given on day five.

I had problems with my epidural again, I don't think I mentioned it on my Neobladder op blog, but it only works on the left side of my body.

I was in for nine days and made it home for Christmas. I just had a quiet one at home with my other half. Unfortunately I was re-admitted over new year due to a severe infection. I was in for four days and on a drip and IV antibiotics, as I couldn't keep anything down, not even sips of water.

It's now been two months since the operation. At first I was see-sawing between diarrhoea and constipation. I couldn't eat a lot, I was living off soups and smoothies. I've been taking cranberry and multivitamin supplements which help a lot. I was very weak and tired so I slept a lot. Even now, I end up taking an afternoon nap occasionally, but I'm getting stronger. I can walk to town and back (although that's not far - a five minute walk), but I need a rest afterwards.

I came off all my pain meds, which was fine at first, but then some of my pelvic pain returned so I'm back on Gabapentin and occasionally Tramadol. Now I can see how the pelvic pain and bladder pain interacted in a positive feedback loop, now that I experience the pelvic pain on it's own. But it's a definite improvement, and now the bladder pain has gone and the pelvic pain is isolated it is much easier to deal with. Breathing exercises also help (like in Thai Chi and Qi-gong).

The indwelling catheter caused me problems as due to the bacteria in the urine, the pouch produced more mucus which constantly blocked the catheter, even when the bag was replaced with a flip-flo valve. I had to use saline flushes and syringes every time I voided my bladder. This was removed last week and I was taught how to self catheterise through the new stoma which is in my navel. I picked it up in about 10 minutes, it was fairly easy once I knew what angle to put it in.

The new catheters are huge; well over a foot long, but they need to be to reach the new pouch. They have a little ball shape on the end and the eyelets are lower down. The ball pushes through the internal valve (which keeps me continent) and I feel a little 'pop' and it goes in. There is a lot less mucus now, so I only need to flush saline twice a day. Even then nothing much comes out.

I get a lot of bloating, even when I haven't eaten, and my tummy feels like jelly. I've invested in a Wii Fit (my family clubbed together and bought us a Wii for Christmas) which is great. I'm hoping to go swimming at the weekend, just need to pick up some waterproof dressings as part of the wound is still healing. But I'm most looking forward to getting back to work! I've been a prisoner in my house for nearly two years so it will be good to get out there again! It won't be easy, the economic climate being as it is. I want to do an Open University part time masters course, if I can afford it.

So all in all - although I never want a repeat of that experience again - so far it's worth it. There's not much to be done about the remaining 10% of pelvic pain, other than experimenting with certain medications with a pain specialist. There is still the option of sacral nerve therapy, but unless the situation becomes unbearable, I don't want to undergo any more surgery in the near future. But there is no denying that my quality of life has improved. I'm sure the weakness and fatigue will improve over time, although it will never fully go away.

Thank-you to those who have followed this blog and stuck with me, and for your messages of support. It's sad that there are so many of us with this condition, but comforting that there are those who understand, and support each other, and I couldn't have got through this without you. Thank you to the people from COB, and it's members. I owe a big thank you to a certain individual - she knows who she is - without whom I wouldn't be sat here writing this.

And most of all, THANK YOU the health professionals who have treated me, especially the team who did my Mitrofanoff. They were amazing.