Some Advice needed...Please

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New Member

Date Joined Oct 2005
Total Posts : 16
   Posted 10/31/2005 10:37 PM (GMT -6)   
confused  Hello...I have a few questions and can't seem to find any one that knows what I'm talking about...maybe someone here can help...I've had my loop-Ileostomy now since Sept 25...and I still have a considerable amount of pain...last week I told the surgeon that I can feel the stoma when it outputs sometimes and it bothers a pinching feeling...twisting sort of like pain.. He told me to my face that he's never heard of this before and brushed me off my saying it's all in my head...I tried to explain this to my ET nurse(stoma nurse) she's not sure what it could be....I'm just wondering if anyone has had this happen to's very hard to explain...but a while ago I just realized that  maybe the pain I'm feeling is from the inside like a blockage of sort...any in-put is welcome...I'm feeling very confused...Thanks!

New Member

Date Joined Oct 2005
Total Posts : 6
   Posted 11/1/2005 2:15 AM (GMT -6)   
Hi, I'm new around here too, and I don't have any clue what is going on with your ileostomy, but I do understand your concern.

I think if I were in your shoes, I would persist with the doctor. If he was non-responsive, I would consider changing doctors. Sometimes it's hard to remember that our healthcare professionals WORK FOR US, and they are accountable to us. To me, being brushed off is both insulting and unprofessional.

Sorry this wasn't some useful information, hopefully someone else may have some similar experience to relate. In any event, best wishes with this.
Type 2 Diabetes /  Temp. Colostomy with attending hernia
"No,'s a medical condition, not a baby"

Regular Member

Date Joined Aug 2003
Total Posts : 335
   Posted 11/1/2005 6:18 AM (GMT -6)   
I think that if your Doctor is being so dismissive of how you are feeling then maybe you would be better off finding a different Doctor.

When you say you feel a "pinching feeling", is it painful or just "weird"? I ask this because when I first had my Ileostomy I used to get weird feelings,like a sort of tightness when my stoma was active but it either went away or I have just got used to it and dont notice it anymore. If it is actuely pain that you are feeling then maybe you do have some sort of a partial blockage. Are you drinking enough fluid to alow for the food to be pushed through your system properly?and always chew chew chew your food well.(I learned this to my cost with a partial blockage,ouch.)
I was told that with an Ileostomy the intestines do a sort of right hand turn before it comes out onto the belly,so when you think about it the food passing through has a more difficult time passing through the intestines than it would have before when it just went straight down.And that is why we are more prone to blockages. It's only happened to me twice in nearly 3 years though and each time I new it was down to me not chewing properly. 

I have been told that it is not possable for us to feel pain in the stoma(no nerves or somthing,I am not sure) so although your pain is real,I would say that it is a sort of refered pain from around the stoma area.

I hope that made some sense. If you are in pain and not able to get on with your life because of it then you are within your rights to find a Doctor that is going to listen to you.

I hope that you feel better soon


Post Edited (bag lady) : 11/1/2005 4:27:38 AM (GMT-7)

New Member

Date Joined Oct 2005
Total Posts : 16
   Posted 11/1/2005 11:32 AM (GMT -6)   
Hey Lynne and Bag Lady...
Thanks for your replies...Bag Lady it made alot of sense what you said, my nurse and I think I should try going to soft jello's, pudding, egges, boost, apple sauce, ensure and see if that helps..if it is a blockage than it should be gone real soon...I will keep an eye on the chewing and water intake...I do drink alot so much that the nurse thinks I don't eat enough cause i drink so much I'm always full...I will keep you posted..oh and Also..we will try to change the appliance to a flat flange cause right now I use a convexity one.
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