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have to live with stoma hole

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Posted 2/20/2018 11:12 PM (GMT 0)
I have this hole right next to my stoma which has output coming from it aswell as the normal spout hole,, this hole i was told by my stoma nurse is a fistula that can be fixed with re doing the stoma well cutting the top off of the stoma an moving it to the other side of my stomach,, but surgeon told me today it is not a fistula its just a hole that wont ever heal,, and he wont operate on the stoma as its way to dangerous, so i just have to live with the hole which is abit sore for rest of my life sigh how can that be right that i just have to put up with it when my stoma nurse said the opposite , i dunno just find the whole things confusing i thought they would eventually want to sort you out with the best stoma ect the hole is sore when you touch it an causes itching but i just have to live with it as im lucky it was not much worse sigh maybe it really is not a big deal but i am suprised an dont know how can my stoma nurse have been wrong she told me so many times an she is an expert on things like this surely so strange to me
Posted 2/21/2018 12:46 PM (GMT 0)
I would trust a surgeon over a nurse....but it can't hurt to get a second opinion if you don't trust your doc.
Posted 2/21/2018 4:29 PM (GMT 0)
Does the hole leak? Is there a risk of infection?
Posted 2/22/2018 12:34 AM (GMT 0)
As a previous poster mentioned, I would strongly suggest seeking another opinion. Go to another surgeon, don't just take the advice of a nurse. I'm sure there's some sort of solution.
Posted 2/22/2018 2:53 AM (GMT 0)
I will say this, I had a similar issue (they called it a "satellite hole", and ultimately my stoma sort of expanded into that hole area. So, my stoma went from like 1.25in to ~2inch, from what i remember. Ultimately, I went into NYC to research hospitals, and had my stoma re-sited (ie moved from my right to my left), and while it was a scary experience (as is getting your first stoma), I was much better afterwards.

I would seek another opinion. Re-siting it IS a big deal... you can only do that so many times because you develop scar tissues and makes healing worse with each iteration. But, there may be other options that your current doc isn't considering.
Posted 2/22/2018 11:53 AM (GMT 0)
I dont know how you get a second opinion im in uk , i do like my surgeon but i was told he is very cautious about doing any operations he said to me himself *another doctor might do it but i wont* he said im still healing as well i also have a mucus fistula/sinus,, all these different names ppl give things,,, the end of my rectum was left outside of my tummy an it secretes mucus still and is sore too but he told me this should heal hopefully but he cant say for sure,,, so im waiting to see if that one heals but the hole at the stoma he said will not heal,, i definetly dont think the mucus fistula will heal on its own as its been 6 months now
Posted 2/22/2018 12:18 PM (GMT 0)
What meds are you on?
Posted 2/22/2018 4:33 PM (GMT 0)
Im only on an antidepressant and bisoprolol for a non serious heart thing
Posted 2/23/2018 6:21 AM (GMT 0)
i would not let that go on! it is totally irrational to say, well ya just gotta live with it. i realize you NHS restricts the type of care you can get but i would fight to have it corrected. you have no idea what is going on on the inside as it drains and festers. it may close up and make a abcess . so definately do all you can to see another dr for a 2nd opinion.
Posted 2/23/2018 11:13 AM (GMT 0)

thore33 said...
I will say this, I had a similar issue (they called it a "satellite hole", and ultimately my stoma sort of expanded into that hole area. So, my stoma went from like 1.25in to ~2inch, from what i remember. Ultimately, I went into NYC to research hospitals, and had my stoma re-sited (ie moved from my right to my left), and while it was a scary experience (as is getting your first stoma), I was much better afterwards.

I would seek another opinion. Re-siting it IS a big deal... you can only do that so many times because you develop scar tissues and makes healing worse with each iteration. But, there may be other options that your current doc isn't considering.

O god thats not good is your stoma fine now? yes i dont really want another surgery but i dont like to think this hole will always be there an it makes it hard for me to just forget i have the stoma , i dont mind havin it if i can forget about it but the hole makes issues for me
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