Community Forums

hernia support  

Page 4 / 4
  RSS

Dona
 Dona
(@dona)
Registered
Joined: 2 years ago
Posts: 677
08/06/2017 4:59 pm  

Hi Carolyn and thanks for the message.

In answer... maybe a bit backwards. I live in coastal California just north of San Diego. My medical center is attached to the University of Calif at San Diego ( La Jolla) and has a medical school.  I think they are pretty 'up' on care and current procedures. I even had a third year med student attending..I'm such a celebrity( not really). Everyone has to learn.

I do not have a local support group. I do have stoma nurses I can call or e mail at the medical center. They were helpful when I needed to switch to a convex wafer due to an occasionally flush stoma. I was very happy to find Eric's site here as I think I do best on line.

I get my supplies from Shield Heath Care here in the US. I have medicare, so I they are not a financial burden ( as they would be otherwise). I use Hollister products with and Eakin( cohesive) ring ( which I do have to buy ... )

I have really been on no kind of special diet with my illiostomy.  But I avoid some things...dried fruit, apple peels.coconut, pinnapple etc. Anything that doesn't chew up pretty quick, I spit out ( gross , I know...only at home).I drink A TON of water. I also just eat small meals and hardly anything  at all after lunch. That way, I can sleep through the night with out emptying the bag.A good thing. Since I could hardly eat at all with the UC this is a real improvement. I do eat very well, lots of fruit and vegetables and I get exercise every day. Before the surgery I took extra care to get a lot of exercise and get in the best shape I could.

My hernia was also very small and right up next to the stoma. Thanks for explaining the twists or knuckles you have. Interesting.  I don't think now that I ever had a blockage, just three instances of the incarceration of the illium by the hernia. It kind of works out to the same result, although the 'fix' is different. I too lived in fear of it happening again.

As to the blood thinner, I know there are 'bridging' drugs they can and do  give you during surgery. Ask about what they do. They can also install temporary filters to block clots, ask about that too.

Five weeks in the hospital must have seemed like a very very long time! I couldn't wait to leave after two nights. I spend three there when I first got my stoma and colectomy . My husband forgot to bring my going home cloths so I went home in my hospital gown! NOT WAITING for cloths anyway. It was pretty funny. 

I am a bit younger than you, so I don't know how or if that is a factor. I do feel better every day though.

I wish you well and good luck with the consult next time.

I have been to England a couple of times, just London. But we went to Ireland several years ago ( just before the UC struck) and had a wonderful time on Ring of Kerry and Skelig Michael Island. Canada looks wonderful too.

Be well.

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


ReplyQuote
Jattzl
(@jattzl)
Registered
Joined: 2 years ago
Posts: 59
17/04/2018 1:42 pm  

Hi Dona,

Hope you are doing well.  I was wondering if you could give us an update on how you are doing after some time has past.  I have had a hernia next to my stoma for about a year now.  When I saw the surgeon they said to wait and to wear a hernia belt.  After four different sizes and styles  and several osto nurses help we have yet to find one that I can wear for multiple reasons.  Anyway.  I have never had any complications from it but I feel it pop in and out all the time and need to hold my stomach for everything.  When I take a shower I need to keep pressure on it or it really bulges.  It sounds gross and I would  like to take away this constant burden and fear but I am afraid of the surgery from all of the complications I have read.  Thank you!

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


Dona and VeganOstomy liked
ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2352
17/04/2018 4:41 pm  
Posted by: Jattzl

After four different sizes and styles  and several osto nurses help we have yet to find one that I can wear for multiple reasons. 

This seems typical. I have several hernia belts that I'm wearing and will be reviewing and they all have something "wrong" with them. sigh. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


Jattzl and Dona liked
ReplyQuote
Tony H
(@tony-h)
Registered
Joined: 2 years ago
Posts: 164
17/04/2018 5:42 pm  

looking forward to that review Eric , I am currently using a comfizz and its just some of the small things can really be so annoying eg. the label for the belt is on the inside of the belt , I mean we are doing everything to not irritate the skin and here they go and put a label on the inside where it can itch and scratch , the finishing on the belt is fairly poor as well with raised and heavy stitching on the inside as well , its the only option I have at the moment and it does help support my hernia , but all it should take is for someone from the company to wear it and notice these things , anyway rant over .


kenf11 and Dona liked
ReplyQuote
carolynreinhart
(@carolynreinhart)
Registered
Joined: 2 years ago
Posts: 52
17/04/2018 6:03 pm  

Hi

I have been wearing a hernia belt for a over a year now - made by Weircomfee. It was recommended by my stoma nurse in Toronto and they are located outside of Toronto in Alliston. There is a website. You have to go and be measured which may be a problem but the belt was custom made and has been very helpful and reliable. I am about to have surgery for the same problem - with my small bowel sneaking out of the defect in my stoma/hernia and so far has caused 7 blockages which are not nice at all. I will have a piece of mesh put in and the stoma will be revised therefore so I will have to work out new appliances again. 

Let me know if you have any other questions. 

Carolyn Reinhart


Dona liked
ReplyQuote
carolynreinhart
(@carolynreinhart)
Registered
Joined: 2 years ago
Posts: 52
17/04/2018 6:06 pm  

Hi 

I just sent a response to Tony H and you might find it useful to some degree - I am having the same surgery as has been suggested to you. It will be in June and I don't have much choice since I have had 7 blockages in a year. I have had my ileostomy for 2 years and have been wearing a hernia belt which was custom made but still had the small bowel pop out.

Carolyn Reinhart


Dona liked
ReplyQuote
carolynreinhart
(@carolynreinhart)
Registered
Joined: 2 years ago
Posts: 52
17/04/2018 6:08 pm  

Hi

I have just sent two responses you might want to look at - one to Tony H and Izzie? They are just about my experience and pending surgery and hernia belts. 

Carolyn Reinhart


Dona liked
ReplyQuote
Dona
 Dona
(@dona)
Registered
Joined: 2 years ago
Posts: 677
17/04/2018 6:21 pm  

Hi Jattzi ,

I am doing great! Its been almost a year ( May 25) since my surgery and I am very pleased with the results. No problems so far. No more bulging  around the stoma and best of all, I don't worry about it anymore. Prior to the repair I had two incarcerations, no fun at all.  I can't speak to how much a hernia belt helps as I never had one. When I went back to the surgeon that installed my stoma in the first place and described what had happened ( and it was captured on a CAT scan too), they just referred me (STAT) to a surgeon specializing this this type of repair.

The type of repair I had is about 98% successful. For the kind without the mesh support the success rate is very low.

AT the very least you should be evaluated for the repair surgery.

Having your illium escape and/or escape and then be trapped out there in the abdominal wall is a life threatening state.

  My husband and I like to travel, and I would be afraid to go anywhere if I hadn't had it fixed.Even so, we are sticking ( so far at least) to places with good medical care. So I won't be hiking the Inca Trail anytime soon. Ah well.

and Carolyn... good luck on the upcoming repairs!

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


ReplyQuote
Jattzl
(@jattzl)
Registered
Joined: 2 years ago
Posts: 59
17/04/2018 7:14 pm  

I have researched and purchased several and watched all of your reviews!  It is my body shape and the placement of my stoma.  I have a very small waist and wider hips and we have not found one that doesn't ride up which pulls on the appliance leading to leaks and ends up covering my stoma.  Ugh.

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


ReplyQuote
Kerby
(@lkerby33)
Registered
Joined: 2 years ago
Posts: 83
17/04/2018 8:54 pm  

I'm not sure what the width of your belt is?  Maybe a shorter belt wouldnt ride up. I have been wearing the Nu-Hope Hernia belt. 4inch, comfortable. I've ordered a cooker one for Summer. Hopefully will have Hernia surgery in the Fall.  I look like I swallowed a Basketball Belt really tucks me in. 


ReplyQuote
carolynreinhart
(@carolynreinhart)
Registered
Joined: 2 years ago
Posts: 52
17/04/2018 8:59 pm  

Thanks Dona - its good to see your name and hear from you in this way. 

Carolyn Reinhart


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2352
18/04/2018 12:30 am  
Posted by: carolynreinhart

I have been wearing a hernia belt for a over a year now - made by Weircomfee. It was recommended by my stoma nurse in Toronto and they are located outside of Toronto in Alliston. There is a website. 

Unfortunately, Weir has stopped taking orders and the future of the company is up in the air. It's really disappointing, as I've always recommended their seatbelt covers, but it is what it is. Hopefully, they'll start back up again. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


ReplyQuote
Jattzl
(@jattzl)
Registered
Joined: 2 years ago
Posts: 59
18/04/2018 1:08 am  

Thank you for your help.  Sadly,  All of the belts were custom made and measured by ostomy nurses and finally the doctor.   We also tried different widths hoping that that would help but the same thing happened. So I was unable to find one.  

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


ReplyQuote
Jattzl
(@jattzl)
Registered
Joined: 2 years ago
Posts: 59
18/04/2018 1:12 am  

So glad to hear that you are doing well Dona!  I have been evaluated and am going back this month for a second evaluation now that it has gotten to be more of a problem  And I'm like you the fear and worry is a big problem.

Thank you

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


ReplyQuote
Dona
 Dona
(@dona)
Registered
Joined: 2 years ago
Posts: 677
18/04/2018 9:38 am  

Thanks, Jattzi,

Good luck with this. I do think that all or most of these 'mechanical' problems can be repaired.

Write down questions and take notes on the answers! Let us know how it goes too.

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


Jattzl liked
ReplyQuote
carolynreinhart
(@carolynreinhart)
Registered
Joined: 2 years ago
Posts: 52
18/04/2018 10:22 am  

Oh no - they sold so many things I bought. Rosemary's husband died so she sold the business but it was supposed to keep going???

Carolyn Reinhart


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2352
18/04/2018 10:36 am  
Posted by: carolynreinhart

Oh no - they sold so many things I bought. Rosemary's husband died so she sold the business but it was supposed to keep going???

Here's what their website says:

 

1524062190-weir.png

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


Jattzl liked
ReplyQuote
carolynreinhart
(@carolynreinhart)
Registered
Joined: 2 years ago
Posts: 52
18/04/2018 10:41 am  

thanks

Carolyn Reinhart


ReplyQuote
carolynreinhart
(@carolynreinhart)
Registered
Joined: 2 years ago
Posts: 52
18/04/2018 12:38 pm  

Hello Jattzl

When are you having another consultation? Where do you live - ie which hospital? I'd like to hear how you make out - I am seeing my surgeon again next week to find out more - I can let you know if you want to keep in touch. 

All the best,

Carolyn

Carolyn Reinhart


ReplyQuote
Jattzl
(@jattzl)
Registered
Joined: 2 years ago
Posts: 59
18/04/2018 1:36 pm  

Hi Carolyn,

Hopefully in the beginning of May.  I have not made my appointment yet as I am confirming insurance before and have a pile of Diabetes issues with my pump and cgm going on too.  Also I'm not sure if you saw my post about the mucus issue so I'll need to talk with them about that too as that may also need surgery.  Ugh.  I live in Arizona and go to the Mayo Clinic in Scottsdale.  I will be following your progress and will send updates.

All the best to you too.  One step at a time is how I cope.  It's the only way :)

Joanne

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


ReplyQuote
Page 4 / 4
Share:

  
Working

Please Login or Register