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carolynreinhart
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October 20, 2017 1:36 pm  

Hi Eric

I am having to decide on whether I want surgery for a parastomal hernia to do with my ileostomy. I would like to find out, somehow, which the most successful procedure is - sugar baker - laparoscopic, etc and where and which surgeon as a special reputation for doing this. Some people suggest that Toronto is the place to go especially Sunnybrook. My surgeon in Huntsville is suggesting a colo-rectal surgeon in Barrie. Do you have any information or sources? 

Thanks, Carolyn 

Carolyn Reinhart


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VeganOstomy
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October 21, 2017 10:16 am  

Hi Carolyn, 

A good surgeon will be able to give you success rates and failure rates for each procedure. 

I'd be interested in finding out whether information on this is available, so I'll do a little research to see what I can find. 

As for hospitals, I've only had experience at Mount Sinai and had several great experiences there. You can't go wrong with Sunnybrook either. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Tony H
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October 21, 2017 10:37 am  

I would be interested to know this as well as I have just developed a small parastomal hernia as well , at the moment im trying to purchase a nu hope belt but the delivery times are very long from the us  , I would like to know if anyone has any alternatives to the nu hope belts as they seem to be the best option for me at the moment .


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VeganOstomy
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October 21, 2017 10:43 am  

Here are two studies that look at success rates :

Systematic review of open techniques for parastomal hernia repair.

Surgical techniques for parastomal hernia repair: a systematic review of the literature.

CONCLUSIONS : Suture repair of parastomal hernia should be abandoned because of increased recurrence rates. The use of mesh in parastomal hernia repair significantly reduces recurrence rates and is safe with a low overall rate of mesh infection. In laparoscopic repair, the Sugarbaker technique is superior over the keyhole technique showing fewer recurrences. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marco
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October 21, 2017 12:34 pm  

From what I understand is that the sandwich technique, which combines the keyhole and Sugarbaker techniques , is even better with a recurrence rate of only 2-3% (if I remember correctly).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4919719/


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Dona
 Dona
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October 21, 2017 1:05 pm  

Hey Carolyn, Great to hear from you again ( although, its too bad you still need the surgery).

I had this surgery  ( Sugarbaker) 5 months ago ( and posted a lot here about it at that time).  I haven't had any reoccurrence and the repair seems to be working.  I get a slight 'ping' sometimes where the mesh is tacked down.. nothing much and it goes away. I am pleased with the outcome.

Recovery took about a month to feel back to the new normal . There were nine holes in me from the laparoscope instrument. No stitches to be removed... they were subcutaneous and then there was some very cool glue on the surface that wore off about 3 to 4 weeks later. 

This was done by a surgeon who specializes in this sort of repair and at a major teaching hospital in the San Diego area ( La Jolla).  About an hour and a half of surgery and Two nights in hospital.

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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Dona
 Dona
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October 21, 2017 1:35 pm  

Eric.. I can't find all those older posts from before my hernia surgery and right after. My surgery was late May of 2017... are they somewhere I am not looking?

They might be of interest to those of you needing repairs and I don't want to blather on!

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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Marco
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October 21, 2017 3:49 pm  

Hi Dona,

I think you are referring to this posts: https://www.veganostomy.ca/community/ostomy-products/hernia-support/paged/1/

Great to hear you are doing well Dona. I have been following your posts, I think I will need that corrected as well (sooner or later).


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john68
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October 21, 2017 4:37 pm  

Hi Tony,

Have you looked at Comfizz web site, from what I remember they have a belt that may suit, plus English company so quicker delivery.

ileostomy 31st August 1994 for Crohns


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Dona
 Dona
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October 21, 2017 5:09 pm  

Hey Marco,

Thanks for posting that link to the previous thread. Thats the one. I was looking for .  I does look like sooner or later we all have to deal with this issue . There were articles that my husband read that said some doctors are thinking about installing the mesh at the same time the ostomy is put in. Sounds like a plan ( at least in some cases).

I am happy that my patch job worked. I hope you get the right fix when/if the time comes.

I am also very happy not to have to worry about my ileum escaping all the time! However it is hard to train it to behave without taking corrective measures. As my surgeon said ' It's just plumbing'.

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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Tony H
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October 21, 2017 5:32 pm  
Posted by: john68

Hi Tony,

Have you looked at Comfizz web site, from what I remember they have a belt that may suit, plus English company so quicker delivery.

Hey John I might just try them , they have a belt with a hole for the baseplate  , I did get a support garment from them before but it put too much pressure on the bag and resulted in a spectacular blow out when I was asleep , but aside from that the support belt with level 3 support looks good .


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john68
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October 21, 2017 5:56 pm  

worth looking into, just bear in mind is their some thing about hernia belts that they have to be measured according to each person?

ileostomy 31st August 1994 for Crohns


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Jattzl
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October 22, 2017 12:30 pm  

I also have a small parastomal hernia that so far stays in most of the time. But that’s with being constantly aware of putting pressure on it when sneezing etc. I’m dealing with the same questions. I was measured by nurse and ordered the nu-hope hernia belt. Nothing we did made it fit. I have a small waist and it would slide up and bend the pouch and block my stoma. We are now waiting for another one. Ugh. Not much help at all. 

48 years Type 1 Diabetes, insulin pump, CGM, neurological complications, retinopathy, and autoimmune CIDP. Nerve damage led to ileostomy in 1/2015. Joanne


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Dona
 Dona
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October 22, 2017 12:48 pm  

On my second trip to the emergency room with the hernia my illium  was captured during a 'great escape' by a CAT scan. That is when they told me it needed repair ASAP. I  think when they get like that, they do not fix themselves ( too bad).  In my case, the illium actually went out through the hernia in my abdominal wall so it was next to my skin layer. The bad thing is that it can get temporarily captured there ( incarcerated) or stuck there ( strangulated).  Both are serious conditions  needing medical attention.  My hernia  was described to me as 'significant size'...whatever that is!

Good luck and pay special attention if you become nauseous.

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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Tony H
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October 22, 2017 2:50 pm  

thanks Donna for the good advice , I wont know for a while if my  surgeon will operate , my GI thinks there is no need at the moment and I won't be seeing my surgeon for a while , in the meantime I will be getting another support belt (this time with a hole for the bag) , the one I have already is very wide and I have to use a shield device under it or else it blows up 

Edited: 6 months  ago

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carolynreinhart
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October 22, 2017 8:54 pm  

Thank you for this information. It is helpful. Also I would need to find a good surgeon who can perform this type of surgery. 

Carolyn Reinhart


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carolynreinhart
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October 22, 2017 9:07 pm  

Hi Tony

I just wrote a long message and thought that I sent it but a error message came up. I got a custom made hernia belt made by www.weircomfees.com. It is well made and has been very helpful. Do you know of a surgeon who can do the Sugar Baker technique? Have you made any inquiries about surgery and would you go back to your surgeon? Do you have a colostomy or ileostomy?

Carolyn Reinhart


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Tony H
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October 23, 2017 6:54 am  

Hi Carolyn I have an ileostomy and I know 2 great surgeons , the first one is in a nearby hospital but is very busy and at the moment is only doing cancer surgery ,the other surgeon who performed my colectomy is in Dublin and Im currently waiting for an appointment with him , unless jm having problems i dont think i will go for surgery at the moment , I might have to have a Proctectomy in the future and if I do i will get the hernia sorted at the same time.


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VeganOstomy
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October 23, 2017 12:43 pm  
Posted by: Carolyn Reinhart

I just wrote a long message and thought that I sent it but a error message came up.

That's a shame :( Perhaps you were logged out before hitting the "send" button?

Do you know of a surgeon who can do the Sugar Baker technique? Have you made any inquiries about surgery and would you go back to your surgeon?

Carolyn, have you asked your GI for a referral to a surgeon who specializes in this type of surgery? Mine was great at giving me options, but I ultimately settled with Mount Sinai because of their reputation in the IBD community. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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carolynreinhart
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October 23, 2017 3:39 pm  

Hi Tony 

So you live in Ireland. I live in northern Ontario. So surgeon recommendations cant apply I guess. Thanks, and all the best to you. 

Carolyn Reinhart


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