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Can anyone answer this question about change in shape of new ileostomy stoma?

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Posted 7/3/2012 8:27 PM (GMT 0)
My new stoma I had to get because the first one stenosed was 2 and 1/4 cms across with the opening right in the middle and all was well.

SInce I got this new stoma June 4th, it has naturally shrunk down as they do in the first few months.

But yesterday a bunch of thick protein shakes actually gunked up behind the thing and I had to walk a LOT and drink lots of water to get things moving. As this was the sign of my former stoma's stenosis I was naturally a bit concerned, but the stoma is not swollen and discolored like the former one was when it stenosed and the gunk did move out.


BUT this morning I noticed that the total width of the stoma is still 2 and 1/4 cm's across BUT 1 cm of that is totally adhered down to the skin and only 1 and 1/4 cm's is the actual functioning stoma. Poop is moving out of it but I have had mostly liquid today.

I emailed the doc with this new description of my stoma and he emailed back as long as stuff is moving out, size and shape of stoma's does change over the first few months. This is true.

BUT does anyone else have an ileo stoma where 1 cm of it like one whole end of it is totally flat to the skin and the other 1 and 1/4 cm of it is the active part. This is an end stoma and not a loop stoma. If something is going wrong with this one I do not think I could stand it but I would need to get it dealt with if something is going wrong. I still have pain around the stoma and need to rest frequently. I think some days I overdo it and set myself back a bit but all I really do for exercise is walk so that should not be too bad one month out from surgery. Or do I over do it. Some days I walk a mile and other days only a half mile.

Tell me what you think. Thanks, Rosemary
Posted 7/3/2012 10:34 PM (GMT 0)
Rosemary, what I think is that you are very traumatized from your incredibly traumatic experience w/your stenosed stoma, not to mention your first experience w/unnecessary surgery etc.

I am not surprised that your energy is on the low side -- you were sick and kind of malnourished for months. Not to mention, stressed through the roof.

But you did the right thing -- you saw a potential problem, contacted the docs who have earned your trust, and they said no emergency. You can't predict what's going to happen down the road, but sheesh, w/what you've dealt w/already, trust that you could deal w/it if you had to, but right now you don't have to. Your main task is to rest and recover. So, good to be vigilant about potential emergencies that require immediate attention.... but if it's not that, try to stay present and do what you need to do for yourself today, rather than putting your energy into imagining what you would do if something went wrong in the future. I know it's hard....

Hopefully someone else will have more specific info about your stoma shape...
Posted 7/4/2012 1:44 AM (GMT 0)
I understand what you are saying Blue, but I cannot pass anything the least bit formed because of all this change in shape of new stoma. I know it sounds over the edge. My friends here are all saying just relax, my vna nurse is too, but the fact is that all I can pass is liquid. No clue what to do. I went out and walk all day in the fresh air. Am just going back to liquids for time being and see what comes. I am at a loss. Thanks for your support.

RJ
Posted 7/4/2012 4:16 AM (GMT 0)
Rosemary,send me a pic of your new stoma.
Posted 7/4/2012 4:21 AM (GMT 0)
OK Tracy. I plan to change my bag tomorrow so I will take a picture of it now that it has assumed this weird formation. I am freaking about this. If it still worked well I would not care what shape it was, but as the new shape is affecting its function I am freaked. I will send you a picture of it when it was working and new as of prior to this weekend and how it is now. You will really see the difference. Rosemary
Posted 7/4/2012 4:25 AM (GMT 0)
PS Tracy, What are you doing up so late? I am up late too and have to get to bed. I am so down. I could die. I am like WTH do I do? Auugh! It was soooo good at first. Where do we go to get stoma's well made?

I cannot believe that first one stenosed on me, but the abdominal wall had not been opened enough. I think that was part of the issue. BUT when that one was made I was down to 99 lbs as it took me so long to find help. I wonder if that had anything to do with it. I know that doc had my best interest at heart. I think this one did too. I don't think my body could stand another go round. This time I would interview the docs and see how many stoma's they had made.

I wonder if there are such things as stoma specialist docs? Maybe they are not that easy to make???

RJ
Posted 7/4/2012 12:44 PM (GMT 0)
Sounds like time to contact the new docs again and say that all the stuff is not coming out (since they said it was fine as long as everything was coming out). Perhaps there's an easier fix than you're thinking.
Posted 7/4/2012 2:21 PM (GMT 0)
I know. The next few days I will eat real food, drink my 3 quarts of water, and keep an input output log. Then will take picture of the weird stoma change. The VNA will be here tomorrow and she can put in a call to the new docs for me. I sure hope this is not something massive. Maybe a simple cure. Praying so. RJ
Posted 7/4/2012 3:14 PM (GMT 0)
Oh no, I'm sorry that this is frightening you again. Blueglass is right, though, there could be an easier fix than what you're thinking will end up happening. Are you able to email a picture of your stoma to the surgeon? I sent pictures of my incision to my surgeon when it opened up (because of a fistula) after my first surgery. That way they can see what you are talking about.
Posted 7/21/2012 3:17 AM (GMT 0)
Yes, I emailed pics of my stoma to my surgeon. Have a few consults upcoming. Stoma shrinking down more, splaying out more on my skin. Jeeze. BUT still so far better than going around with the stenosed one. I wish my original ostomy surgeon had not retired he would have dealt with this in a timely fashion and been able to make me a better revised stoma. I actually got a communication from him saying the stenosis clearly needed to be dealt with he was glad I found help and that it was too bad it was not dealt with at the hospital where I was going. WHen he retired the colorectal dept at that hospital went down hill. He said that the stoma nurse there could still help me with pouching questions no matter who made the stoma. I said I had already sent her pictures and my questions and left a message on her machine and had gotten no response. Even though my first stoma stenosed, that retired doc saved my life and his heart was totally in it. I sent him post cards from all my trips and he according to his stoma nurse was just so pleased that he saved me and I got to do all that travel. I guess docs like that are hard to come by. Rosemary
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