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Dona
 Dona
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May 22, 2017 1:17 pm  

Hi Carolyn,

Your difficulties sound more complex than mine . So sorry. It seems like a really great idea to write everything down ahead of time for when you find yourself in unfamiliar surroundings. Nothing like the discomfort of a loose illium  ( to say the least) to drive any clear thoughts out of your head.

I will let you all know how it goes. Right now I am preparing for this by getting myself in the best physical shape I can. I am nearly 69 years old, but fit and healthy ( now that I got rid of my nasty and useless colon). I also have a very supportive partner, which really helps too.

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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Cassoday12
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May 22, 2017 1:39 pm  

Thank you for posting this information Dona. I have an appointment with my surgeon on Thursday and this will give me so much more info  to talk with him intelligently. I am concerned that because of my roundness I probably have a lot of belly fat, a condition I'm sure that didn't help with me not getting a hernia. I did lose a lot of weight during the last 6 months but not near enough. My hernia is just left of my midline almost under the stoma for my mucus fistula. The actual colostomy stoma is to the right of my midline and surgical incision. 

Dona i'll be keeping you in my thoughts and prayers on the 25th while you undergo the repair procedure.  Carolyn, I have a colostomy not an ileostomy but I would love to correspond with you. Will let you all know what my surgeon and I come up with after I see him.

Susan and *Lumpy the happy dancing Stoma*

Susan Mueller


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Dona
 Dona
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May 22, 2017 2:42 pm  

Hello SusAN,

I AM HAPPY TO HEAR THIS INFO MIGHT BE USEFUL TO YOU, AND SOON! IT IS BETTER TO GO TO THESE APPOINTMENT WITH SOME INFO AND A LIST OF QUESTIONS. I GET MUDDLED UP IF I DON'T HAVE A LIST. sorry about the caps lock! Yikes. We must all be proactive when it comes to health care. Its hard, especially when you are feeling bad.

I don't even know if belly fat has anything to do with getting a hernia ( it surely might for repair, I don't know). I am pretty slender ( especially after the years of colitis), but still got one. And, I get a lot of exercise too, so who knows why ? Not the doctors I asked. As they are fond of saying, everyone is different. I do have the greatest respect for them too. There is just a lot about all this that is not well known.  Thats one of the great things about Eric's site and this forum. Maybe by sharing we can help figure this stuff out a bit better.

The first time my illium came out the hernia , my husband and I were vacationing in Souther Spain. We had to go to the ER in Granada and do the whole thing in Spanish! That was early March and its taken me this long to get this figured out ( and another ER visit) to get set up for surgery.

Anyway, thanks for the good thoughts. I am optimistic ( but thats maybe just me).

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 22, 2017 5:59 pm  

Thanks for the article Dona

It seems to be the usual story that there are no long term studies completed. The studies that they have included have follow ups less than 2 years. It's very frustrating for patients, there's not really any excuse for not having the information as the technique has been around since the 80's.

It was the same for my surgery, I was invited to be included in a research project. They assessed my abdominal wall at about 18 months, I asked about what follow up studies they were doing and they said none! For a patient, they want to know if the technique will last long term.

I do agree with you that there's no benefit in doing nothing if you have the chance to get the hernia fixed. Fingers crossed that your repair works long term

 

 


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Dona
 Dona
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May 22, 2017 6:46 pm  

Hi Sarah,

It is interesting that are no large long term studies. With so many of us ostomates and many more yet to come ( unfortunately) it is surprising that there is not a better fix. I, like most of you, don't mind the stoma I just want it to work with proper care & feeding!

I was also quite interested in Table 4 from that paper:

Prophylactic Mesh at the Time of Stoma Creation.

Looks like the failure rate on that was down to 10.7 %. Why don't we ALL get these initially? I am sure there are many valid reasons, but I have to wonder.

In part of the article it says that reoccurrence of hernias is 100%  if they just do a repeat of fascial suturing ( I think that means, they just redo what was done the first time). It has the worst success rate of the repair techniques but it is the MOST COMMON.

Go figure.

Maybe I will learn more! Maybe we will all learn more. .

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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carolynreinhart
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May 22, 2017 9:19 pm  

Donna you certainly have done a lot of research.There is a real dirth of it for ostomies in various respects. It's a field that so few people know much about. 

Carolyn Reinhart


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Sarah Green
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May 23, 2017 9:38 am  

Hi Dona

Suturing tends to only be used these days as a temporary fix when there is too high a risk of infection.

I know that these days prophylactic mesh is being used a lot more when the stoma is created. However if the stoma is created in an emergency, or if the individual's intestines are damaged due to disease, then there's a significantly higher risk of infection or a fistula etc so it can't be used in those situations. Infected mesh is a major problem, nobody wants that. 

From my understanding (and I'm not a doctor) artificial mesh can damage the colon, and biological mesh can stretch and not get properly absorbed. Hence the need for long term studies


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Dona
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May 23, 2017 11:06 am  

Thanks for more info Sarah. Yes, more studies seem to be needed. Lets all hope there are some.

 I know  people get stomas for all kinds of reasons. I my case I have no colon, so I guess it can't be damaged anymore! HA.

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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carolynreinhart
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May 23, 2017 4:06 pm  

Hi Donna

I'm sorry to bother you but I can't seem to find the reference for the article you sent me. There was a diagram in it that was very helpful. Please can you send it again.

Thanks,

Carolyn

Carolyn Reinhart


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Dona
 Dona
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May 23, 2017 6:39 pm  

Hi Carolyn,

I think its this one. Let me know if it works. Hope you are doing well!

http://www.abdominalsurg.org/journal/2014/paraostomy-hernias-prosthetic-mesh-repair.html

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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carolynreinhart
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May 23, 2017 6:52 pm  

Thank you Donna! This is the one. I am still researching even though my surgeon said no. If this kinking keeps happening, someday I may need surgery and would rather know what I want ahead of time. 

All the best,

Carolyn

Carolyn Reinhart


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larryC
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May 28, 2017 5:40 pm  

Hi, I, like so many others was was warned of a hernia but no one ever mentioned a hernia support belt. After surgery in Mar. of this year I was luck to stumble on Eric's review of a product called Joeies (like the kangaroo). This is a great support belt made by a lovely young lady, herself an ex- ostomate, so she get's it. She runs her cottage industry out of a cool renovated farm house just outside Vancouver B.C. So you pay with Canadian money, comes in three colors, several different styles, each is custom fit, no charge for minor adjustments etc. etc. Check on line at    www.joeies.com  


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Cathycooney@aol.com
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May 28, 2017 7:33 pm  

I was put off my doctors so much about my ginormous hernia in left side if tummy and just told to ignore it. When it really swelled out the docs gave me laxatives and said I was constipated.  This went in for six years until January 2017 my hernia burst my bowel it was agony and I had emergency operation that's left me with a permanent ostomy bag. I'm devastated. Cathy xx


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VeganOstomy
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May 28, 2017 9:51 pm  
Posted by: Cathycooney@aol.com

I was put off my doctors so much about my ginormous hernia in left side if tummy and just told to ignore it. When it really swelled out the docs gave me laxatives and said I was constipated.  This went in for six years until January 2017 my hernia burst my bowel it was agony and I had emergency operation that's left me with a permanent ostomy bag. I'm devastated. Cathy xx

I'm so sorry that's happened to you, Cathy. Sounds completely irresponsible for your doctors to ignore it.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
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May 29, 2017 9:56 am  

Hi, Just a short note. The hernia repair surgery I had last Thursday ( 25th) went very well and, after two days in the hospital I came home. I am steadily getting better and looking forward to a complete recovery. It is still  painful ( as abdominal surgery is) but tylenol is working fine now. I have nine 'puncture' type holes from the laparoscopy & the attachments points of the mesh. I'll post more later. My doctors said it went very well though. Their goal is to "fix it so patients can live their lives". Sounds good to me.

 

And, to Cathy just above here. Welcome to the group. I too am sorry to hear about your hernia and its bursting. Horrible. It does sound like something that should have and could have been fixed. But, I am happy for you that you have found Eric's great web support.

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 29, 2017 10:05 am  

So glad to hear that, Dona! 

I wish you a speedy recovery! Are there any follow-ups to the surgery, or is that it? 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
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May 29, 2017 12:25 pm  

Hi Eric,

Yes I go back a week from to day to visit the surgeons. Any short questions you want me to work into the conversation?

My husband did ask the question about what to do ongoing about minimizing reoccurrence that is what illicited the above quote! I think they expect it to stay. Judgeging from the stitches, it looks like the mesh is about the size of an 8 X 10 piece of paper, laid crosswise on my belly and centered over the stoma. That mesh is tacked in place . ( there is also another piece of  mesh just around the whole stoma). I think these peristomal ones are harder to patch that one just somewhere on the abdomen...

Thanks for the good wishes!

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 29, 2017 12:38 pm  
Posted by: Dona

Any short questions you want me to work into the conversation?

I'm sure you'll be asking these, but I'm curious to know the answers:

  • Is the mesh permanent, as in, it would never be expected to be replaced for the rest of your life?
  • How many months/years before a full recovery?

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
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May 29, 2017 2:25 pm  

Those are great questions. I think the mesh is permanent, I hope so!

And I think full recovery from this surgery is 4 to 6 weeks.  ( maybe only in California, but my discharge papers from the hospital specified "no hot tubs, soaking baths, pools or ocean swimming for six weeks"... I think that addresses the possibility of contamination of the puncture sites),

I will be sure to find out the doctor's answers to those questions.  We all Need to know.

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 29, 2017 4:16 pm  

Yes, I would suspect that public and outdoor water could pose an infection risk.

Looking forward to the official answers =)

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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