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Pressure behind the stoma

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(@maren)
Joined: 2 years ago
Posts: 2
Topic starter  

Hello everybody,

I am Maren, 36 years old and I come from Germany.

Thanks for having me here.

Is there anybody with much pressure behind the ileostomy?
We created a new ileostomy and now everything is all right but this symptom does not stop:-(((

It is trapped gas but local behind the ileostomy exit.
Nothing helps and I am so sad because here in  Germany I have never heard of it. All patients with motility disorders that I know, do not have such a problem.
It comes every day and it is so hard to live with it. In the case of a reversal I unfortunately would die because my intestine is not able to work when it is reconnected and I can live with much pain but this symptom drives me crazy and that it seems to be a problem that nobody knows. I am happy that it seems to be a unnormal problem because I do not want that anybody else has to suffer from it.Does somebody know or have this issue?
I do not speak about the "normal" pain or trapped gas in the intestine. This is also a problem but I talk about this horrible local pressure.

Thanks a lot and best wishes!
Maren


   
LK reacted
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
Posts: 4372
 

Welcome, Maren!

Can you give us a few more details?

  1. When did you have your surgery?
  2. What brand/style of appliance and accessories are you currently using?
  3. Does this pressure happen before a bowel movement or all times?
  4. Does it get better at any point? Like when you pass gas or a bowel movement?
  5. You mentioned that you have an ileostomy. Is your output very thick or is it liquid/loose?
  6. You also mentioned a motility disorder. Do you have one?
  7. When was your last appointment with your surgeon, and do you have access to a stoma nurse?

For at least the first two months following surgery, I had all kinds of pains and aching behind and around my stoma, which slowly went away with time.

If you've just had the surgery, I'm hoping it's just regular recovery pains.

 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@john68)
Joined: 7 years ago
Posts: 2058
 

Hi Maren, Welcome to the forum. Are you sure that you are get the correct fit from your wafer. I mean not having it too tight as it’s choking the stoma. Plus are you leaving long gaps between meals and then having a large meal.

ileostomy 31st August 1994 for Crohns


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 600
 

Have they done a cat scan? Have you been to your doctor and Ostomy nurse about this?


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 600
 

@john68 I have had that happen many of times cutting my own hole in the barrier and your right! It hurts and chokes things off.


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1557
 

@maren ... Hello Maren & welcome to VO! I'm sorry to hear of your troubles & I understand how frustrating it can be especially when we put so much hope in the surgery in the first place.  

I had a terrible amount of motility issues growing up & into my adult life. I really  welcomed the surgery that led to my ileostomy. 

  I would like you to answer Erics questions because we can help you better with that information. If you have the time please try. They are important questions and will lead to the right persons with your situation helping you.

Thank you for reaching out! 

Linda 


 

Linda


   
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