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ROSEMARY STOMA 4 in the a.m.

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Posted 11/15/2012 2:29 AM (GMT 0)
Well saw the doc today. My stoma of sept has officially stenosed. Doc was horrified. She is redoing it locally to the stoma tomorrow. She does not think she will have to open me again as she brought up a lot of bowel and my stoma is quite long right now.

She said she will open my abdominal wall a lot and count on the fact that I will fill it in with scar tissue. I am glad she is on this as I am in mega pain. I cannot believe all this!

Rosemary
Posted 11/15/2012 2:38 AM (GMT 0)
Oh my goodness. I'm so sorry. I'm glad your doc is on top of it and recognizes that it happened.
Posted 11/15/2012 3:08 AM (GMT 0)

esoR said...
Well saw the doc today. My stoma of sept has officially stenosed. Doc was horrified. She is redoing it locally to the stoma tomorrow. She does not think she will have to open me again as she brought up a lot of bowel and my stoma is quite long right now.

She said she will open my abdominal wall a lot and count on the fact that I will fill it in with scar tissue. I am glad she is on this as I am in mega pain. I cannot believe all this!

Rosemary

Well, it was to be predicted. Will this nightmare stop, I mean w.t.f. You gotta tell them this constant stenosing and not working stomas are not acceptable. I know easier said than done, but something else has to be done.
Posted 11/15/2012 3:35 AM (GMT 0)
Oh no...just don't know what to say anymore...at least you have a doctor who seems very concerned and sincere about wanting to correct this...but this is too much for one person!
Posted 11/15/2012 8:27 AM (GMT 0)
agree with the other posts. Wow! when will this stop!?!? will be thinking of you and praying hard that this is the END of your nightmare. Big hugs x
Posted 11/15/2012 9:45 AM (GMT 0)
Sending you best wishes and some healing energy. Fingers crossed this time works!!!
Posted 11/15/2012 8:26 PM (GMT 0)
Rosemary, I know you are at the end of your tether and have been for a while. But please do allow the thought that what the doctor will now do with this stenosis may be the last thing that needs to be done. That is what I am hoping for you.
Posted 11/16/2012 4:36 PM (GMT 0)
Hi all

Thx been out of it 24 hours just walking today so nauseas from stuck air in me

They said only tip of stoma that pointed to right was stenosed so they just cut it off pulled out more bowel and made new stoma

They put some kind of small drainage straw in looks a bit bloody but am pooping out tons of gas thank god

Pt therapists got me up to walk and lots gas came out yeah

Keep prayers
Posted 11/16/2012 4:45 PM (GMT 0)
Wow - thank goodness they didn't have to open you up again. Praying that this one works for you! May you have many happy gurgles, noises, gasses, and poops!
Posted 11/16/2012 4:58 PM (GMT 0)
Fantastic news! Praying HARD that this is end for you now and your lovely new stoma will continue to work well! Couldn't have said it better than ActiveUCer.. :-)

Just as an FYI - I saw my surgeon today who said you can't have an 'end' stoma with a colon in situ as there isn't enough room and the angulations of the small bowel behind the stoma can easily develop adhesions. Your surgeon did the right thing taking your colon out. Hang in there Rosemary! MASSIVE healing hugs coming your way. x
Posted 11/16/2012 6:04 PM (GMT 0)
Yes the greatest joy is pooping and farting! Still waiting for the resident to see if we need the tube back in the stoma that fell out! We want to keep it open til the swelling subsides and for long long long after
Posted 11/16/2012 10:44 PM (GMT 0)
So happy for you!!!!! Keep those positive healing thoughts going.
Posted 11/16/2012 11:16 PM (GMT 0)
Thanks just met my stoma very swollen of course. Stoma nurse helped me with a change. The output hole is a bit off center but as long as it keeps working. But all these work at first. So...............

We shall see. Rosemary
Posted 11/16/2012 11:36 PM (GMT 0)
Rosemary, so sorry you had to go through this yet again, but fingers crossed. Hope this is the last one, and you can keep pooping and farting smoothly for a long long time.... hang in.
Posted 11/17/2012 12:13 AM (GMT 0)
I sure hope so. Each time I have surgery now I have to get a picc line as my veins are all shot. Sure hoping this stoma lasts but they are all good at first. Time will tell. Rosemary
Posted 11/17/2012 7:29 AM (GMT 0)
Rosemary I really wish I knew what to write you to reverse your sad expectations of the helped-out stoma you just got. This is the first time though, in all your tribulations with surgeons, that they put a tube in. Would it be possible, and would it be unpleasant for you, if the tube stayed in?
Sending you all sorts of comfort.
Posted 11/17/2012 4:03 PM (GMT 0)
Hi B'D good thought about keeping the tube in but yesterday later in the day i learned that they just put the tube in to keep it open first 24 hours and that if the tube gets pushed out they view it as good because it means the small bowel and stoma are working. It was sort of a test to see if i had normal activityu around and in back of the stoma and to keep it open that first 24 hours.

The surgeon was just in and she said she has never seen what happened to me happen to anyone else. As you recall my first stoma that lasted 4 good years stenosed at the abdominal wall level. That one was then fixed but that one stenosed at the skin level and was fixed out here in az in sept. This time (the redo of the sept stoma) stenosed at neither the fascia level, nor the skin level, but it stenosed right at the very end of the actual stoma itself. She had made the stoma quite long about an inch as she wanted to bring out more bowel as was needed but then it seemed to me like the end of the stoma got narrow and hard. Oct all was open and nov the end of the stoma itself stenosed. I did thank her for getting me right in. But i asked what the prognosis was. She said it should last as the abdominal wall level is very open, skin level open, and tip of the stoma is gone! So she said by logic all should work!

She was like just when i thought i'd seen it all then there was my stoma where the very tip stenosed. So what had to be done really was. Very minimal like the head of residences told me.
Posted 11/17/2012 4:42 PM (GMT 0)
Hmm, maybe the unhappy parts of your small intestines are gone now? It sounds like the parts getting stenosed kept getting more and more external?
Posted 11/17/2012 4:49 PM (GMT 0)
Lol i sure hope this is it! RJ
Posted 11/17/2012 9:44 PM (GMT 0)
Ok piCc line out and heading back to hotel. My doc did her best just removing the very end of the stoma that was stenosed. But now the hole is not in the middle of the stoma. Is is way off to the left of center as swelling goes down i wonder how this is going to be. I just pray it works that's all. I really do not know how much more of this i can take. My doc is super and is head colorectal surgeon at mayo az. She is about 50 i think. I do not know how many stomas she has made but from all i have learned then hearing her and looking at op reports it looks like she knows her stuff regarding blood supply, muscles etc. But, i don't know maybe older surgeons have done more of these. My first ileo doc was about 70 when he did mine and i got 4 years out of it. I wonder if it is such a specialty you need someone who does hundreds per year. If you can, email me the name of your stoma surgeons. My email is posted if you click my name. As this one was stenosed at the tip of the stoma only and not at skin or fascia level, for once it may not have been my scar tissue formation that was the cause. It seemed like the atomawas too long, bent to the right, and was more bent when i put on the bag. Maybe it was too long. I don't know. I cannot feel this one peristalse in and out of me either so i dk if that is normal or not. But so far this is working. The preop nurse put in for a social worker to visit me as i am so worried about this stoma going down but she never showed. Anyway for now it feels good to eat! R
Posted 11/17/2012 10:40 PM (GMT 0)
More comforting thoughts. Enjoy food but do not over-do it!
Posted 11/17/2012 10:56 PM (GMT 0)
Yep you are right! R
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