Many of you have followed my trials and tribulations over the last year and I'm so grateful to you all for your support and words of advice. Your experience and knowledge is just awesome..
I wouldn't have made the decision to have the ileo put back it it wasn't for your encouragement and support and I thank you all from the bottom of my heart. Life with an ileo is pretty good - certainly better than the alternative. Your experiences gave me the confidence to have it done and know that it was the right thing to do.
So I saw my surgeon today for the 6 week check.. I had my permanent ileo done 6 weeks ago - and he's thrilled with how I'm doing. I bounced into his room full of energy and wearing tight JEANS and heels ! feeling amazing. I'm up to running 40 minutes, did a 2 hour bike ride and am eating pretty much anything I like and sleeping and feeling GREAT. There have been a couple of blips with leaks and a small infection at the incision site, but other than that I'm doing really well.
It seems that I'm a bit of a medical mystery. They have no idea why I ended up with colonic dysmotility after what should have been a simple surgery and after the stoma was reversed the first time. They THINK the peritonitis damaged the nerves in my colon causing dysmotility but they don't know for sure - none of my tests were ever conclusive. You'll probably find a paper in the BMJ about
me one day..
What's also really interesting is that he said no other surgeon would have put my stoma back. He consulted many of his colleagues and none of them said he should do it. In fact many of them said I should have a psych eval!!! I basically begged him to put it back - I felt better with it before and just wanted it back. I was lucky - he was VERY supportive and knew me well - he had been there right from the start when I had peritonitis and he saved my life.
I think it's sad that surgeons won't offer a stoma to people as an option - I would never have been offered an ileo as a solution to my problems and would have been left to suffer. It was only because I'd had one before and knew I felt better then that I could say with knowledge that was what I wanted. And I was right.
Anyway... I thought I'd make a little list of the things I've had done over the last 16 months - just for fun!
4 surgeries - emergency surgery to treat peritonitis, sigmoid colectomy/stoma formation, stoma reversal, laparascopy/stoma formation
5 CT scans (with contrast)
1 MRI Scan (with contrast)
3 Gastrograffin enemas
1 small bowel follow through
2 transit tests with Xray
14 consultations with 3 different consultants (inc a world leading professor)
1 incorrect diagnosis of SIBO
8 courses of antibiotics
4 IV courses of antibiotics
22 days in hospital
Many many hours spent on Healingwell
So as long as I don't develop a hernia or any complications or diversion colitis, then I will never see a hospital again.. hopefully. I'm not even going to consider a J-pouch. I want control over my bowel to allow me to run marathons and I don't believe I would have that with a pouch. I still have my colon floating about
but at the moment it's not causing any problems. Now it's bypassed though I'm feeling amazing!
So tonight I'll be celebrating with a little drop of prossecco and pizza (with vegetables) !!!!
Thank you all for your support and big hurrah! fingers crossed it continues .. x