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VeganOstomy
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May 2, 2017 1:20 pm  

One of our members, Kae, asked about prolapsed stomas, and another member rstevens replied with:

A prolapse happens more so with a loop ileostomy. You for sure will know if it ever happens to you as it becomes extremely engorged and also comes out of your body way further than normal. It can be painful especially the first time it happens. Mine was chronically prolapse from January of 2016 until my surgery in December. It would only go back to normal if I were lying down on my back.

Prolapsed stomas are no joke. 

I'm curious to know if anyone else has experience with one.  

Another friend of mine, Sara Ringer (of Inflamed and Untamed) wrote an article about how they were able to get Ryan's stoma to retract. It's a pretty cool trick.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
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May 2, 2017 2:14 pm  

WOW.. thanks Eric. That was very interesting ( the pretty cool trick link). I have never heard of a prolapsed stoma. Good to know. There seems to be quite a lot 'they' don't tell you right after surgery. We need a better 'owners' manual for stomas.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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VeganOstomy
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May 2, 2017 2:18 pm  

Dona, fortunately, prolapsed stomas aren't something we should expect.  It was bad luck, but it does happen.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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uc2ostomy
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May 2, 2017 5:54 pm  
Posted by: Dona

 We need a better 'owners' manual for stomas.
   

Yeah that book would be awesome :) 


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Dona
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May 2, 2017 7:18 pm  

Hi,

When I was preparing for my colectomy ( almost 2 years ago) I was given sort of a comic book as an introduction.! It was pretty ( very) low on information. I had a great stoma nurse and that did help. But there are so many issues I had never heard of. I now have the peristomal ( as opposed to parastomal) hernia and am having the repair work done on the 25th. This is probably not the right thread for this subject, but when I find which one, and figure it out I'll post there. ( hint: peristomal is right next to the stoma...para is in the vicinty).

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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VeganOstomy
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May 3, 2017 12:53 am  

Good luck with the repair, Dona. 

I'm sure we'd all benefit from you sharing how that goes. At some point, I would like to write an article about hernias, but I'd be relying a lot on other people's experiences.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Sarah Green
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May 3, 2017 3:01 am  

I love that fact that even the top hospital still use the sugar trick. But can we remind people that if they do have a prolapse they should talk to their stoma nurse (or equivalent), and not try this remedy at home


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VeganOstomy
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May 3, 2017 3:19 am  
Posted by: Sarah Green

 

But can we remind people that if they do have a prolapse they should talk to their stoma nurse (or equivalent), and not try this remedy at home  

Yes, absolutely. A prolapse is serious (and alarming) so anyone experiencing one should let their stoma nurse and/or surgeon know about it as soon as they can. The sugar trick should be used under the guidance of a medical professional. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
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May 3, 2017 11:46 am  

Good luck with the repair, Dona. 

I'm sure we'd all benefit from you sharing how that goes. At some point, I would like to write an article about hernias, but I'd be relying a lot on other people's experiences.

 

Hi Eric,

I would be happy to share what I learn.

 

I do have a question. Can I post links to articles here? There are a couple we have found that are very well written and useful that deal with hernias and repair ( for ostomies).

Let me know if, and where that would be O.K.Thanks.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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VeganOstomy
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May 3, 2017 2:20 pm  
Posted by: Dona

I do have a question. Can I post links to articles here? There are a couple we have found that are very well written and useful that deal with hernias and repair ( for ostomies).

Let me know if, and where that would be O.K.Thanks. 

Yes, you can.

I included a small blurb about this in the Forum Code of Conduct:

"Feel free to include a link to a website or video (especially ones found on the VeganOstomy site and/or YouTube channel) to a post if you feel that it adds value to the conversation. But please don’t abuse this privilege by self-promoting, posting advertisements, or adding affiliate links."

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
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May 3, 2017 5:33 pm  

Great.

 Here is one I found really interesting:

https://www.karger.com/Article/FullText/369279

Thanks.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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VeganOstomy
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May 3, 2017 5:37 pm  
Posted by: Dona

 

Great.

 Here is one I found really interesting:

https://www.karger.com/Article/FullText/369279

Thanks.

   

Thanks for sharing! It's quite interesting to see the rates in Table 2 for the different stoma types!

I wonder why the Loop ileo/colostomies have a lower rate than the end.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
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May 3, 2017 5:48 pm  

Hi,

Yes, the tables for the different rate of occurrences and stoma type are quite eye opening.

It is a fairly recent article, and pretty understandable as these things go.

 

When you get the the 'repair' section, I will be having the Sugarbaker type ( great name huh? its the Dr. who invented it.

It is supposed to have a much higher rate of success than some of the others. ( We have another link to an article which speaks to this particular technique).  My surgeon has been doing this one for about 10 years. He uses some kind of mesh ( not a biologic). It has the effect of making kind of a hammock that supports the ileum and takes the pressure off the hernia area). I guess I will know soon enough. ( Actually, I would rather have it done tomorrow...do NOT want NG tube EVER again).

FYI My doctors and hospital are in the University of Calif. system in La Jolla, CA.

 

Just ask if you want to know more ( or less).

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Sarah Green
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May 3, 2017 6:40 pm  

The problem with a lot of these statistics is lack of follow up data. I was involved in a study in the UK and met the research doctor at 18 months post surgery. I asked if they were doing any follow up studies and he said no. I asked how long I would remain at a high risk for and he said 3 years, I then asked if I would continue to be at risk and he said yes. Makes no sense that they aren't doing any follow up after 18 months.

I spoke to a different doctor about how it makes no sense that they aren't at least following up for 3 years and I was given the impression that it was to make their numbers look better

 


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VeganOstomy
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May 3, 2017 6:50 pm  

Sarah, you're absolutely right. The study linked about makes several mentions to short follow-up times.  I guess, unfortunately, follow-ups cost money and require quite a bit more time than the people doing the study have.

But I wonder if simply interviewing stoma nurses who've been doing this for decades (and have the same patients through that time) might be helpful.  

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Sarah Green
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May 4, 2017 8:38 am  

I think that the most important things with hernias is prevention, which is partly down to the surgeon's handywork and also down to 

  • Abdominal binders when exercising 
  • Keeping fit 
  • Holding the tummy tight when sneezing or coughing
  • Roll and pushing out of bed during the post surgery recuperation stage
  • Keeping the weight off the tummy area

One surgeon that I spoke to pretty much said that the risk of a parastomal hernias re-occurring was so high it's more a case of when (i.e. how long you live) rather than if. 


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Dona
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May 4, 2017 2:15 pm  

Here is a web site ( NHS... UK) that explains in a simple manner the difference between loop illiostomy and end illiostomy. There looks like a lot of good info here.  There is also all kinds of IBD ,colostomy info etc. on this site.

http://www.nhs.uk/Conditions/Ileostomy/Pages/How-is-it-performed.aspx

Maybe a reason some of this surgery requires later repair is that pretty much all of us are quite sick and run down when we have the original ostomy installed. I don't know, but its a thought.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Sarah Green
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May 5, 2017 5:04 am  
Posted by: Dona

 

Here is a web site ( NHS... UK) that explains in a simple manner the difference between loop illiostomy and end illiostomy. 

http://www.nhs.uk/Conditions/Ileostomy/Pages/How-is-it-performed.aspx

   

Thanks for this Dona. The one point in the article that I think needs clarifying is that both end and loop ileostomies can both be reversed and also both be kept permanently, it's all down to the reason for the stoma.


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Pumbaa
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May 23, 2017 4:46 pm  
Posted by: Sarah Green

 

I think that the most important things with hernias is prevention, which is partly down to the surgeon's handywork and also down to 

  • Abdominal binders when exercising 
  • Keeping fit 
  • Holding the tummy tight when sneezing or coughing
  • Roll and pushing out of bed during the post surgery recuperation stage
  • Keeping the weight off the tummy area

One surgeon that I spoke to pretty much said that the risk of a parastomal hernias re-occurring was so high it's more a case of when (i.e. how long you live) rather than if. 

   

It would have been nice to have been told all of those things, especially about pushing and rolling out of bed.  Absolutely no one told me that at the hospital; I spent four nights there, and they let me pull myself up using the bed rails.

 

Donna

Ileostomy 11/11/2016 due to colon cancer


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Cathycooney@aol.com
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May 28, 2017 9:13 pm  

Hi I'm Cathy, I had an hernia for about four years, doctors were not concerned.  But in January 2017 my hernia strangulated my bowel so I now have a permanent ostomy. 


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