Possible reversal!

Saw my surgeon yesterday for a 3 week post surgery check up. He's happy with progress. All healing well.. my main incision is amazingly neat and will fade to nothing! No infection and stoma seems to be working. I haven't really tested it yet, but certainly am slowly eating a little more which is good. Just need to gain a little weight.. but that will come.

When he did surgery he took some samples of colon and small bowel and they've run all sorts of tests to diagnose 'dysmotility', nerve damage and so on. They've all come back NEGATIVE.. no dysmotility!! I was 'diagnosed' with colonic dysmotility last year after my reversal when nothing worked and I begged my surgeon to put the stoma back. It was a process of elimination at the time as they couldn't work out why things weren't working as they should.

We still don't know why things didn't work BUT the situation is that now he wants me to reconsider a stoma reversal in 6-8 months. That would be my 6th surgery. If it didn't work, I'd then have a proctocolectomy and end ileo. Or I could just choose not to take the risk and go down that route anyway.

How I'll make that decision I really don't know. I can live quite happily with a stoma so long as I can eat and train and live my life.. quality of life is the most important thing for me. However.. the thought of NOT having a bag forever I don't have to is quite a nice one! But we won't know if it will work. The one difference now is that he's also resected my cecum and cecoileovalve so my ultimate 'function' may be different. But we wont' know until we try it.

I know I don't have to think about it yet and I've got plenty of time to think about it. But.. what a decision!?!?

A tough decision indeed with all your prior surgeries but I can certainly understand the appeal of being able to live life without the bag if possible. You have time to think and process the info as you say. If you decide ultimately on the surgery to reverse things I truly hope it will go nice and easy for you. At least you do know what life is like with the need for wafers and pouches and if for some reason you needed to ultimately go back to that you could. More surgery and recuperating from same is no picnic but if it is that important then I am sure you will find the way to cope with it all too. Good Luck.

sara. your decision will come to you. no reason to worry about it or rush it. Focus your mind on getting fully recovered and getting back to your usual lifestyle.

I made huge decision a year or so ago regarding surgeries myself. My jpouch failed.. horridly may I say! I had been given a diverting ileo with the jpouch left intact because I was far too sick at the time to do anything else. Many can just carry on and live that way. For me, it didn't work, I developed severe diversionary pouchitis, joint pains, going to bathroom 20+times a day for mucuos junk, other pains, continued rectal meds, etc.. So I had to choose between going for a jpouch redo operataion.. meaning build a whole new jpouch and end up with no bag.. hopefully. Or jpouch excision and permanant ileostomy operation.

What cinched my decision was the 18months of time with my "temporary" diverting ileostomy. Even though I was still sick with that poorly jpouch inside, I was still able to do stuff - ran three half marathons, worked more than full time, had some social life, etc.. So for me, that 18months of living life made my decision for me. I didn't want any more risks, I didn't want more setbacks, I didn't want to take more chances, I didn't want even more possible surgeries and trauma to my body.. as the jpouch redo would've been 2 more surgeries and if it failed.. even more. So I went for the permanant ileostomy. My actual decision came to me almost instananeously one day. There was no deadline. I just woke up one day and said enough. Enough enough.. Called my surgeon and made my pre-op appointements to get that jpouch removed and permanant ileo created.

so for you, you may find that your new well functioning ileo gives you your life back and you may just be done with it all. Or you may find that you feel limited with it. Time will tell. Your decision will come to you.

sarah so glad your new ileo is good. it is my understanding that you still need the ileocecal valve in you if you have any part of your colon that they want to connect back to small intestine. the valve keeps stuff going small intestine to colon and no backflow. do ask about this if you go for the reversal.

you have been thru so much and if the ileo works and you can live with it that would get my vote, but i am not you and i can see why the alure of being connecting and working would have some appeal, but ask about that valve. it is my understanding from your post that they removed the vavle am i right?

you have lots of time to decide and time to enjoy gradually eating again. i would give anything for a totally centered totally good working ileo without a bunch of adhesions which i know are lurking within.

Rosemary

Hi Sarah
So happy to hear that your op was successful. Sorry you have to make another difficult decision. I am sure when the time comes you will know what to do. I can relate, they also want to re-operate in 6 months to change loop ileo to end ileo and remove my rectum but i'm thinking way scratch where it doesn't itch? It's all working so fantastically now, i don't want to jeopardize everything and end up in a worse situation. I'm thinking i'll just stick to what works. But i understand it's different in your case as option of having no bag is definitely worth thinking about.

How is the introducing of new foods working for you?

Good luck with the rest of your recovery and the decision that follows.

Lolly

Well im glad they are getting to the bottom of it.
There is no rush to make this decision and its nice in someways to have a choice but now is the time to just take it easy for a while with family friends etc and in time im sure you will do what's best for you and who knows, having a stoma that actually works well may help you make that decision for you!

ROF