i got my stoma back! :-)

Still in hospital but just a little update... Bear with me as on blackberry with tiny screen. Had my surgery on Monday and now have an end ileostomy. My surgeon also went in with a scope as was desperate to find something he could fix and to avoid the stoma.. He apparnetly had a good rummage and must have used a lot of air as I'm very bloated and uncomfortable.

The only thing he did say was that my colon was very long and very floppy with little muscle tone.. Explains the dysmotility and all my problems. He somehow thinks the peritonitis I had las year kiilled off the nerves.

Anyway... So far things ok. The stoma is working and there is ouput. Sturggling to eat much and feeling very bloated but am walking and walking and hope that will get things moving. I'm still at the yoghurt/jelly stage - and tiny portions. Pretty sore as also have 2 laprascopic scars and very swollen, but the first signs are good! Poor surgeon looked so crestfallen that its come to this and he says he feels he's 'failed' but I don't feel like that. Its not the end of the world for me - far from it. I feel like its the start of a bettter life where I can get back to eating and enjoying food and exercising again.

Keep everthing crossed that recovery continues.. Sure it will be a bumpy path but I'm happy to be patient go with my body and let it heal. I'm dreaming about steak, chips and red wine - maybe in a few months!

Thank you for all your support and advice as it has really helped me get to this point and its so inspiring to hear wonderful positive stories.
Sarah xxx (and Roger the stoma)

So glad things have worked out for you how you wanted them to. Surgeons, bless them, have big egos and don't like to be wrong but he should remember that this is what you wanted and so he shouldn't think of it as a failure.

Hope recovery goes well for you and that you'll soon be tucking into that steak and chips. At least the red wine can be enjoyed earlier as you don't have to chew it. :) lol

Hey Sarah -- happy to hear things are going well after the surgery. Keep us posted on your progress. Every day will get better and better.

I can understand how your surgeon feels -- my husband's was disappointed too that he could not honor my husband's desire for the j-pouch and needed to do a permanent ileostomy. Even though they are entrusted by you and you know all the risks, they certainly want to try to accomodate and please the patient too with the end result that the patient is hoping for. But as we know this is not the way it always goes.

He and I are not disappointed which is what I am also gathering from your comments too. To improve your quality of life and being able to get on with your lives now is so much more important. All the Best!!

Great News Sarah and your right life will be much better and steak, chips, red wine and anything else you want to eat is going to be not a problem. Just have to make sure you chew well. The only way it up from here on. Take care
Doreen

I am very happy to hear that your surgery went well. Here is to better times ahead with lots of steak and chips!

My surgeon never had the chance to be disappointed in me ending up with an ileo because that is what I wanted from the start:) Fortunately he was always supportive of that choice.

Best wishes for a smooth recovery.

Thanks everyone. Am going home tomorrow! Day by day am improving and managing to eat a little more each day. Taking it very easy but feeling so much brighter already and like a weight has been lifted off my shoulders. Can't wait to get home to my bed and my boys. Alho the nursing care has been brilliant and I've been very well looked after. Am keeping topped up on the pain meds and intend to take it easy! For a change ;-)

My surgeon popped in last night and announced he had been talking to his mates in the US and reckoned he had a plan to 'plumb me back together' (he's left my 'long floppy colon in situ for now). I just laughed and told him he was never coming anywhere near me again. darn what IS it with these guys!? He just can't let it lie. If I feel better, can eat properly and exercise again all with a stoma.. Why on earth would I want to risk changing that?! Duh don't think so. You all get that don't you!?

Thanks again to you all xx

i definitely agree. why go back to something that doesn't work? i asked my surgeon to do me an end ileo, he said "sure no problem", and when i woke up from surgery i saw the loop and was SOOOOOO pissed. i confronted him and he said he can't just do me an end ileo right at first..... jerk!!!! then why say "sure no problem" and then do the opposite???? some drs.....

but anyway, i'm doing great and happy with my squirty :)

glad you're doing well and going home :):)

Well have just got home this afternoon and doing okay. Was starving when I got home and had some rice, fish and even few veggies.. tiny amount though. But all going through well and Roger is doing a grand job.. am very happy with him so far

Having a few wobbles about the bag being there forever, but am only 4 days post surgery and emotions all over the place, tired and sore. To be expected I guess, even though I wanted this.

Imagine the minute I eat my steak and chips and get out for my first run, I'll be forever grateful to my new buddy.

Surgeon discharged me this morning and was less 'huffy' about it. He's the same age as me and lives just up the road, we have friends in common etc etc and I think he would have done anything to not have to do this to me. That's all it is I think and he's never reversed a reversal before - so as far as he's concerned it's a 'failure'. Sure he'll get over it ! once he sees me running marathons again anyway ;-)

Am craving salt though so my electrolyte levels must be all over the place. Am sorting that by eating crisps! he he he.

I had a lot of emotional ups and downs after surgery even though I really, really wanted my permanent ileo. It does get better as you begin to realize how good you feel.

All these posts about surgeons makes me extra thankful for mine. He never made me feel bad about choosing a permanent ileostomy at all. He made it sound like just as good of a choice as a j-pouch and encouraged me to pick the one that I thought was best for my goals, values and lifestyle. I guess he was unusual!

      Congrats Sarah!  Glad you are up and about.  Just take things slow. 

      My surgeon would not even consider a j-pouch for me but as soon as I told him I had no problem with the idea of wearing a "bag", I was just so sick of always being sick, he scheduled me for surgery as soon as he felt the Humira was out of my system (about six weeks later).

     My GI doctor was the one who said he felt he "failed" me.  All he wanted to do was put me on more and more drugs, none (except prednisone) of which did squat for twelve years.  At the age of 63 I felt I had better make my own decisions.  Needless to say, I have never returned to my GI doctor.  He never asked my surgeon how I was doing even after my surgeon phoned him after my operation.  Glad my surgeon never sent him a follow up letter.

     I'm a little over one year post op and have been living life to the fullest!  Enjoying days at the beach the past week

really sorry to hear that news motoe... :-(

They think my dysmotility was caused by the peritonitis I had last year and only affected the colon - although they couldn't guarantee that. It was only because I'd had an ileo before that we had a good idea it would work again. My consultant did warn me that if the rest of the small bowel was affected that the ileo wouldn't work and then there would be no options available.. Thankfully so far it seems to be working just fine, but it was a risk. They didn't really know to be honest - and it sounds like in your case they don't really know either.

If I remember yours came about after a bout of gastroenteritis? I'd therefore question whether the dysmotility has affected the whole of your digestive system.. or if it's just your colon, in which case there's no reason why the ileo wouldn't work. Have you had small bowel motility tests and gastric emptying? that might give you a better idea of whether the small bowel is affected. It may just be that your surgeon isn't willing to take the risk. I"m not sure mine would had I not had the ileo before and had I not begged him to do it. My line was that I knew what I was facing, I'd had one before and knew I felt better. Unfortunately you don't have that bargaining power. Don't give up hope though.. from my experience they'll let you soldier on and leave the ileo as the last resort and it sounds like in your case that's what's happening. I'd try again, and possibly even get yourself over to London to a teaching hospital for a second opinion. The fact is, they don't know what's happening with you and therefore can't say for sure whether the small bowel and stomach is also affected or not.

I'm sure others will have more advice and more experienced than me.. so perhaps start a separate thread and see what advice you get.

I'm doing great so far (fingers crossed) and it's making me realise just how bad things were before. I'm feeling really good and starving which is a strange feeling!

I really hope you find some sort of outcome with all of this, but please don't give up hope. Take care Sarah x