Dealing with a Retracted Ileostomy Stump After Surgery

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3
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3276
stomafart
Jul 03, 2013 8:46 pm
Hello all you lovely people out there. I just have a small question and hope someone out there has an answer.

Since I had my second part of the operation to remove the rectum (proctectomy) one year from the first after having UC and an ileostomy performed, my ileostomy stump has retracted in and caused so many leaks from day one of the operation. I am still under the surgeon and he has, tried this, tried that and we are going nowhere fast.





My question is, has anyone out there had the stoma stump retract back into the tummy? if so what was done about it or do you have to live with this problem?



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monty
Jul 04, 2013 12:55 pm
High and glad to meet you. Had the same thing happen to me, but they did it on purpose.

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They put my stoma in my belly button and its way down there, looks like it sits at the bottom of

of a cup. I leaked so much that I thought my life was over and really didn't want to live anymore.Thank goodness my daughter took me to a medical supply store who fixed me up with a

2 piece system. A much bigger wafer, 5" in fact. Now I can go up to 7 days without changing. I

love it. When my bag gets to gross looking for me I just change the bag but keep the wafer on. Let us know how you do so we can work on it.
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stomafart
Jul 04, 2013 1:44 pm
Hi Monty,



thanks for that. I miss the little stump and all the surgeons who saw it and the stoma nurses said, how cute it was (get a life!) anyway, I am seeing my surgeon on Tuesday 9th July and hope he has some positive news. I am at a losing battle because if I double the dose of imodium and codein phosphate as recommended by my surgeon, the faeces gets too thick and lifts of my bag and if I don't take the recommended dose and drop the dose it is very runny and leaks. Hey ho! It will be alright in the end and if it's not alright it's not the end.



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djcwiley
Jul 31, 2013 9:22 am
I would demand that your surgery pull out more of your small intestine to correct the problem.  Explain the burden you now carry in regards the the self-management of your stoma.  The psychological issues associated with worryin about leakage will create other medical issues like anxiety which means you will have to see another doctor which can be avoided if you take charge of your treatment.



You have a right to be part of managing your healthcare so be proactive and you will be surprise how they will take under advisement.



Debra