BOAT! HOW YOU DOIN'?

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esoR
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   Posted 8/29/2011 8:05 PM (GMT -6)   
Hi Boat,

what is the latest? WOndering how you are. Rosemary

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 9/16/2011 11:50 AM (GMT -6)   
I am hanging in there.

We did the botox, but it just didnt have its desired effect (we retested my manometry and the sphincter muscle was just as tight as prior to the shot).

He is going to perform a sphincterotomy on me as that will basically guarantee some relaxing of my internal sphincter which is the problem. I know the risk is incontinence but I would rather risk that and try to manage it beforeopting for an ileostomy. He is also going to check my anastomosis we have been dilating to see how itis holding up. We will most likely re-do the anastomosis as well as there seems to be some kind of ileal prolapse occuring at the anastomosis which is contributing to some functional obstruction.

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 9/16/2011 11:50 AM (GMT -6)   
If none of that works then it will be on to an ileo.

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 9/16/2011 6:38 PM (GMT -6)   
WOW Boat. Thanks for the update. I wonder how the ileum prolapsed at the anastomosis? maybe having to push due to the non relaxing internal sphincter? Did your sphincter relax OK prior to the colectomy? I think you were the one with the A+ pelvic floor study prior to your surgery. As I remember all was great.

So much can change after these surgeries. ALSO, if you do end up with the ileostomy, you will not be the only one on this board. A number of the ileorectal anastomoses people have gone to ileostomies. So do not feel that you are alone if that happens.

One day Tracy and I were talking and she said she wondered if the small bowel was ever meant to be hooked to a rectum. Good point I thought.

BUT, if this does not work and you do get the ileo, then you and your surgeon will be at peace that everything else was done and the ileo was a last resort. I think you will not find the ileo as bad as the general population thinks they are. I am glad you are trying all else first though, and I hope it works for you.

All my best. keep us posted as to how you do. Rosemary

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 9/29/2011 10:51 AM (GMT -6)   
well, me and my doc have decided to do a temporary loop ileostomy. THe plan is to do it for 3-6 months and attempt a reversal down the road based on defecographies/manometry/plevic floor mris we will take at different intervals to assess progress.

Right now the only thing wrong based on all these tests is my external sphincter paradoxically contracts. I have been working with a physical therapist to try and fix that, but I am constantly going and my bottom/anus is always cut up/bleedingirritated from going so much and having to strain that the muscles are always tense and tight, and cant get a chance to relax (the first month or so after surgery things were fine, I just didnt come off the low residue diet fast enough so my bottom got irritated and all this started due to constant liquid bms over time).

The ileostomy will also allow me to get some sleep and gain some weight (this should be easier for me even with a loop as my surgeon said with skinnier people you can find a loop of small bowel farther down and use it, where you generally have to pull a loop from higher up on heavier people). The added stress from the lack of sleep and lack of food variety is also something that is just making it hard to get things to relax.

I will also be doing progressive anal dilation to help open up the external sphincter and loosen the PR muscle to some degree.

If I dont really make any great progress we may not even reverse it, so this will also give me plenty of time to get used to living with an ileostomy if that happens.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 9/29/2011 12:33 PM (GMT -6)   
Boat,

Just curious, what made your doc decide to do this instead of first doing the spincterotomy and re-do of the anastomosis?

My opinion is that you are doing the right thing with this new plan as you have been suffering for soooooo long. Getting your body nourished and getting sleep is the priority no matter how poop has to leave your body. Overall health is the big picture. Maybe that is what lead your doc to this new plan?

When are you having this done? I wish you all the best.

Rosemary

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 9/30/2011 10:33 AM (GMT -6)   
october 14th. we did the sphincterotomy but didnt re do the anastomosis yet.

The sphincterotomy relaxed my internal sphincter, but my external still has problems. And we cant take a risk doing anything to that as incontinence would pretty much be guaranteed!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 9/30/2011 6:51 PM (GMT -6)   
Oh, I see. Thanks. Good luck Boat. Rosemary
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