Surgery number 5 - 29th Oct... here we go again.

Sorry I haven't been as active on here, but really struggling with my own situ. Still on liquids, ensure etc and down nearly 20lbs feeling pretty crappy. Finally saw top surgeon in London for second appointment and he's been through every scan I've ever had and talk to his colleagues and team.

Surgery (my 5th) is scheduled for Monday 29th October.

Firstly the stoma is narrowed to a pinhole (his words) with this 15cm twisted bit behind. So he has to fix that for sure. No wonder I can't eat anything solid! this has been going on nearly 3 months now, so I'll be glad of the relief. However it's not as simple as just a stoma revision. To get to the bit behind he needs to do a full laparotomy (no more lapro for me) and he wants a birds eye view of what else is going on. We dont' really know why the stoma has done this.. maybe adhesions or maybe the creation the stoma in the first place.. will find out when he goes in.

He can't see anything on the scans but still can't work out why the colon never worked when I got reconnected the first time. He's not happy with the diagnosis of 'dysmotility' and thinks there may be a problem at the orignial anastomosis of the colon - however there is the chance that the peritonitis/abscess did in fact damage the nerves of the colon. BUT - and this is the big BUT - I had 2 normal transit tests so it indicates it was more of a mechanical issue rather than functional. So he wants to try and reconnect and see if it works again. There is the chance the colon may work again (now it's been rested) or he may find something when he goes in that he can fix - something that wasn't seen during lapro surgery or on a scan.

So I'll go into surgery on 29th not knowing what the outcome will be. I need to talk with him on the phone again next week to confirm what he's going to do, but his thoughts at the moment are:

The number 1 plan at the moment is to reconnect small bowel to colon (which is floating around in there) and give me a loop ileo with a view to reversal in 6 months or so. In the meantime they'll do a biopsy on the colon and get that tested. Apparently that will tell whether or not there is a dysmotility which can by diagnosed by histology.

Number 2 plan is that if there's something he can see which he can fix at the anastomosis, he's going to go for a full reconnection with no loop ileo.

To say I'm petrified is the understatement of the year. There is part of me which thinks that no matter how good this surgeon might be, am I clutching at straws? the colon didn't work before, so why will it suddenly work again? Unless he can find something to fix, I wonder if he should just fix the stoma and be done with it.

If he goes with number 1 plan, I could face a takedown in 6 months which won't work. And I'll be back to square one facing surgery number 7 to create another stoma.. that would be the worst case scenario.

Oh lordy.. am honestly feeling very confused and exhausted by it all. Not helped by not feeling great today.

Sorry for the long rambling post. If you can make any sense of it all, then please let me have your thoughts. Thanks x

Oh my goodness, I can't imagine the stress you must be feeling. Since my surgery was an emergency, I wasn't given options, or time to think about everything that you have to think about.

I can't offer any advice or thoughts (since I am still so new to all of this) but you will be in my thoughts and prayers and I hope that they are able to help you so that you don't have to go through this again.

Keep us updated. I hope some of the more experienced folks will be able to give you some advice.

Hugs.

sara.. though I can understand your concerns right now, I do feel that you should try to think very positively about your new surgeon's approach. It sounds like he is doing everything in his knowledge and power to give you the best chance at the best quality of life possible. I think you are blessed to have finally gotten under his care. You have to try to put your faith in him that once you are "out" on that operating table.. that he is truly taking care of you. If you can get your mind in a more settled place about this pre-surgery it will help your body heal post-surgery.

Also as you are an experienced one with all of these surgeries (I've had as many, probably more actually).. you know it is now your time to get this all fixed so you can move on. You have accomplished the first step - you have placed yourself in the hands of a wonderful surgeon. So know you must try to be positive and let him do his job. There really is not much else you can do right now.

Only thing I would question is,,... with all of your weight loss.. and a big upcoming surgery, are they doing anything to get you in the best nutritional status possible before Oct. 29.
big hugs to you.

hey ddd45 .. thanks for your reply. I'm having a tough day today, feeling tired, fragile and emotional and was up all night feeling quite unwell, so I'm sure when I'm feeling a little stronger I'll be feeling more positive.

You're all absolutely right.. I am very very lucky to be under his care. I do trust him implicitly. He seems to be amazing and my husband thought he was fantastic.. very different to previous experience.

I totally will just let him get on with it and I trust him to make the right decision. I've just been dealing with all of this on and off for 2.5 yrs now and am losing faith in my cry of 'when I'm better, I'll do xyz' so I guess whilst being positive, I'm also realistic.

They just took some bloods and I think they're ok. I'm on ensure shakes and lots of homemade soups and juices. Can't tolerate too much more really. I think that's why he's keen to get on with it. Thanks for the hugs.. I need them

Larasmom - thanks for your thoughts too. It all really helps. I too had an emergency surgery right at the beginning.. massive shock, but didn't wake up with a bag, that came a few weeks later. None of this is easy is it?! I hope you're starting to cope a little better. Thanks for your kind words.

Sarah,

Do ask about if the ileocecal valve will be preserved. Your surgeonm does sound like he is very thorough and has several contingency plans.

When you call him, have a list of questions for each contingency plan.

Good thing you could go private or you would be waiting much longer with the pinhole stoma. Not that you have not waited WAY TOO LONG AS IT IS.

And it is hard to be on top of your game when you are so malnourished and have suffered for so long.

Will he use an adhesion barrier? If he uses sprayshield he cannot use it around an anastomosis if he makes one as this will promote a leak, but he would be able to use it between loops of bowel to prevent or lessen interbowel adhesions.

At your GUT LEVEL FEEL................would you just rather have your stoma and the twists behind it reconnected to keep things "simpler?" Or are you excited at the thoguht of being reconnected? (Seeing as this did not work in the past).

Do ask him how the histology testing of the colon will tell him if it will work or not.

These are just things I can think of to ask. Don't mean to add to your confusion. Just want you to get the best possible result.

You have suffered as long as I did with my first stoma stenosis only mine was not even open a pinhole so that is why I had to kive on ivs that whole last week.

My new stoma (2nd revision) tests out great and all behind it but am still trying to figure out my diet. But it feels good to be able to eat albeit odd combo's. Still positional issues and some post op pain and a lot of one day at a time self talk.

Good luck with your talk with the doc. Sometimes the question, what would you do if you were me really works!

Best of luck. ROsemary

Thanks Guys..

Rosemary I'm so so glad you're on the mend - emotionally and physically too. You sound more positive and glad you have more faith in this new stoma - and more to the point it seems to be working better!. Have everything crossed for you that it will continue! Are you back home now?

All good points and yes I will ask him 'what would you do if you were me?'.. good question!

There is part of me that would just like to say 'fix the stoma and be done with it'.. BUT as others have said above, he has to sit back and be more thorough. There has never been any evidence why the colon shouldn't work (aside from the fact it didn't! ;-)). Him and his team are considering it on a whole other level. Which is more than anyone has done before. He is working at a whole different level to previous surgeon. He is a professor and top of his game - probably one of the best we have in the UK and world renowned. My old surgeon was one of his registrars at one point.. so no comparison. I'm hoping that with the laparotomy he'll see something that's not been seen before - who knows.

I have a list of questions for him when I speak with him in the week, certainly about the ileocecum value and the loss of the cecum. Will ask about seprafilm/spraysheild or whatever and about the histology testing. His colleague has a world class pathologist who is a specialist in looking at certain cells in the colon which indicate dysmotility. Apparently it's very diagnostic. It's incredibly rare which is why they can't believe I have it.

Anyway.. I've been really struggling last few days and can hardly even tolerate ensure shakes.. clear liquids, sports drink and sugary tea is pretty much it. He's given me an emergency number so I can go up to London and not locally if things go pearshaped. Hanging in and in the meantime trying to get all arrangements for my family sorted so they'll be cared for whilst I'm gone and out of action. Dog walking rotas etc! you can imagine!

Thanks for all your support. Will keep you posted. S x

Sarah, just getting caught up here. It sounds like you've got a doctor worth trusting. Of course you're a bit of a mess -- you haven't been able to eat in 3 months and you're getting worse. It sounds like no matter what the surgery outcome is, you'll be feeling better afterward (probably not right afterward, but soon after that....), and then it'll be easier to know what the next steps should be.

If there was a problem with your original surgery, you should know that, and if you have or don't have dysmotility, you should also know that.

It is very hard to have to just let go and let someone else make the decisions.... but also maybe a relief, as you're not up for much now. I think you should make sure the surgeon has your priorities clear -- e.g. no stoma is not your #1 priority, quality of life is.... seems that some of the surgeons have trouble understanding that a person might prefer a bag to a reconnection if the bag works better. If you can trust him to listen to you, sounds like you can also trust his medical judgement of which course will most be according to your wishes.

Hang in. Thinking of you. Hoping you get to a point where you can relax a little and let yourself be in someone else's hands.

Thanks B'Dereh for your lovely words.. you have to stop or I'll just keep crying!

Blue thanks for your thoughtful input as always.. you're all so kind.

I'm feeling a bit better today having gotten some sleep but still struggling with any sort of liquid volume. Surgery can't come fast enough actually.

I really do trust him and his team and I really am ok with him making the decisions and doing what they need to. The thought of no stoma is exciting I have to admit that BUT I was fully resigned to living with it quite happily and had it not stopped working, I'd be happily eating, running and doing triathlons without any thought of more surgery.

It totally does boil down to quality of life for me and he totally gets that. He listened and I know he understands. I'd rather have a stoma and better quality of life. I made that very clear.

I have a busy week ahead with one of my sons on half term from school and the other (the one with special needs) off the following week whilst I'm in hospital. Lots to organise and have to get my work and running group sorted out with cover etc.

It's going to be a journey that's for sure! thank goodness we all have each other.. it's the first place I come with news and know you'll all understand. Thank you x