Met with surgeon...

Wow.. ok so now I have a lot to think about. Finally met with amazing surgeon in London yesterday. There is no doubt that my stoma is stenosed.. the opening is apparently less than 1cm, plus there is about 15cm of twists and kinks behind it and a loop of bowel lodged in the abdo wall. Basically it needs fixing. I'm still on liquids etc and have lost 16lbs in total, but I'm stable so long as I don't eat. However...

He wants to take a big step back and have a look at my whole case. He's not buying the 'dysmotility' of my colon which was 'diagnosed' back in June 2011. He says given my history, symptoms and background that there was a stenosis of the anastomosis or some problem which caused the colon to not work properly when I was reconnected in October 2010 - not dysmotility.

According to the last CT, my colon which is still inside just stapled up (or what's left of it) has collapsed and apparently that doesn't happen if there was a dysmotility issue.

He is now going to review my entire case, all reports, all my imaging I've ever had done and we'll talk next week. Surgery is definitely on the cards and it's just a case of what he does. There will be a few options but basically he wants to open me up completely - whether or not he fixes the stoma or not. He seems keen to try and work out why my colon never worked before and thinks he might be able to reconnect. GULP. He also said (which is contrary to what my other surgeon said) that we cant' leave the colon in there indefinitely - even if we stick with the ileo. So Rosemary's Dr having taken hers out has probably done the right thing.

A huge amount to think about and to be honest I'm reeling a bit. I've had 4 lapro surgeries and the irony now that I'm going to have a laparotomy is just not funny. However.. if there is something which has been missed (and lets face it, a few things have been!) and he can reconnect me then.. wow... I'd have to rename my blog for one thing... ;-)

I made it very clear to him that my priority is quality of life.. eating, being able to train and run etc are my priorities. If that mean having an ileo then that's fine. It's not about getting rid of the bag at all costs. He got that. He listened and asked lots of questions and I have to say I feel in really really safe hands. I thought he was fantastic. Really caring, but very very clever and there's an amazing team up there all working together. I've not felt that with my old surgeon ever. He did a lot of head scratching and shrugging his shoulders. Anyway... I digress.

So now I have to collate all my reports and scans and get them to him ASAP. We'll talk next week and make some decisions. It may be that I go into surgery not really knowing what the outcome is going to be. That is quite mindblowing. Surgery will be in the next 2-3 weeks.

thanks B'Dereh.. that's exactly how I feel! am scared of the big surgery, BUT he makes me feel so safe, that I feel I can trust him with my life and to make the right decisions for me.

Sarah, this is great news. There is just such a huge difference between seeing someone who is cutting edge, tops in the field and someone who is very good in general, but gets nervous with an unusual case like yours... the cutting edge folks get energized by trying to help someone with a complicated problem...

Maybe you even have some options, how awesome is that?

Keep us posted....

YES... go the London Team.. hurrah and yay...again!!

Wow - amazing. I can remember the nervous anticipation before my surgery, but to not even know what the (positive) end result might be...just wow. Congratulations!

sarah.. I surely wouldn't worry about whether or not its open surgery. Remember what you said...its about quality of life for you. Seems like you finally have the right doc on your case. So put your trust in him to sort you out. Just make sure he is making decisions based on what is important for you with quality of life.

I so know how you feel. I had less than average surgeons on my first 4 operations. And they caused problems. I finally ended up with the best colorectal surgeon in this country at the mecca of colorectal facilities. I do understsand your feeling of "safe" when you truly have an expert taking care of you. So let the man.. do his hunting, research, and get you fixed back up how he deems the best.
good luck. try and relax til the big day.
liz.