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jonlyo
New Member
Joined:6 months  ago
Posts: 2
15/05/2017 6:10 pm  

hello,  Enjoy the forums and the information you provide.  I am interested in hearing from other members who have hernia problems, types of support products, and issues of mobility sitting,walking.

thank you, jon

 


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VeganOstomy
Bag Master Admin
Joined:3 years  ago
Posts: 562
15/05/2017 11:36 pm  

Welcome to the forum! 

I'm also interested in hearing from people who have experience with a hernia to see how they manage/managed it.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Cassoday12
Active Member
Joined:6 months  ago
Posts: 12
16/05/2017 12:37 am  

Was doing great with my 2 stomas, one for my colostomy, one for mucus fistula. They are about 2 inches above my waist and 3 inches apart. My physical therapist started using a sit to stand to help me get out of bed and BAM!! Nasty fairly large hernia popped right out between the 2 stomas, and almost under the mucus fistula one. 

Talked to my surgeon and he suggested an ostomy hernia support belt until I can get in to see him. He also told me no sit to stand without a support belt . He was surprised that I went 6 months without getting a hernia given the fact that I have to strain so much to get up . I'm a bit miffed that I wasn't told I would need abdominal support when I started intense therapy. I am using a  Bort Ostomy Hernia Belt Stoma Support right now. Has made a world of difference in my comfort level. I will report back after I see the surgeon next week. 

My mobility issues stem from a brain tumor I had removed in 1990. The left motor skill nerves were damaged and I was left partially paralyzed with my left leg  and left arm. I was able to get around good until I developed a nasty abdominal abcess in October, didn't realize I was as sick as I was, ended up in the ER. Emergency surgery to clean me out inside, deal with perforated colon due to diverticulitis. Received the gift of Lumpy the Stoma who saved my life. Very long story short, developed an ileus , NG Tube for 4days, every time they would close it off to see if my digestive system was working I would start violent vomiting. Spent 11 days in ICU and 2 months in the hospital. Another month plus in a rehab care facility. I forgot to mention that I didn't eat for 3 weeks before my hospitalization. Was not able to actually keep solid food down for over 8 weeks. Ended up losing 75 pounds, would not recommend that as a quick way to lose weight. I got so weak  that I was unable to sit up or even turn over for weeks. Still fighting to get active again but I have a fantastic support system, I am truly blessed.

Sorry for making this so long and rambling and thanks for taking the time to read my little book 😉

Susan *transverse colostomy November 3 , 2016* 

            *multiple GI Bleeds due to diverticulitis*.                                                                      

            *Auto-Immune Hepatitis * 

 

 

              

 

l

Susan Mueller


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VeganOstomy
Bag Master Admin
Joined:3 years  ago
Posts: 562
16/05/2017 11:18 am  
Posted by: Cassoday12

He was surprised that I went 6 months without getting a hernia given the fact that I have to strain so much to get up . I'm a bit miffed that I wasn't told I would need abdominal support when I started intense therapy.   

Thanks for sharing this, Cassoday. I'd also be really upset! Knowing that hernias are a common complication, there really is no excuse not to tell patients about it after surgery - especially high-risk patients.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Kae
 Kae
Trusted Member
Joined:6 months  ago
Posts: 56
16/05/2017 2:14 pm  

No one ever mentioned hernia's to me either. It wasn't until I saw it mentioned in these forums that I became aware that it could be an issue. I am especially concerned now as I have had a chest cold the last to weeks and coughing a lot. A support belt sounds like a good idea for me but I am both heavy-set and curvy so have never been able to find something that fits well. 

With all the coughing that I've been doing I've learned that it is best to lean forward to cough. I have a difficult time just holding my stomach when I cough but if I lean forward it compresses the muscles and provides a sort of support. It may not work for everyone, but it definitely helps me.

I am not sure if it is enough to avoid a hernia but it does seem to lessen the pressure about my middle. It's certainly better than nothing.


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VeganOstomy
Bag Master Admin
Joined:3 years  ago
Posts: 562
16/05/2017 2:24 pm  

Kae, whenever I cough or sneeze (or laugh really hard), I always use my hand to put pressure on my stoma. 

This might be also worth doing if you don't have access to a hernia prevention belt. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Kae
 Kae
Trusted Member
Joined:6 months  ago
Posts: 56
16/05/2017 2:38 pm  
Posted by: VeganOstomy

 

Kae, whenever I cough or sneeze (or laugh really hard), I always use my hand to put pressure on my stoma. 

This might be also worth doing if you don't have access to a hernia prevention belt. 

   

I know it's silly but for whatever reason, doing this freaks me out. I really don't know what it is but I can't seem to do this consistently.  It might just be that after coughing so much I am just... sore but I am weird about focused pressure anywhere on my body. 


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VeganOstomy
Bag Master Admin
Joined:3 years  ago
Posts: 562
16/05/2017 4:27 pm  

ha! Well, I started clenching my gut when I laughed or coughed because it hurt so much after surgery and it helped back then.  But now I do it because I want to prevent hernias and I have a terrible habit of holding in sneezes (which puts more pressure on my abdomen). 

"Whatever works", right? =)

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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jonlyo
New Member
Joined:6 months  ago
Posts: 2
19/05/2017 12:58 pm  

Hello Cassoday,

 Thank you for sharing your information and story, sounds like you have a good  outlook and hope all goes well.

 I wish that I had been more aware of the possibility of a hernia, had  wound infection which took some time to heal, so perhaps a high risk of developing a hernia. Was informed abt. precautions with coughing and sneezing. Unfortunately developed a hernia, have been using a Fulcionel belt which fits around my stoma, has Velcro adjustments, wear it sitting, walking, remove at bedtime, and try to take care when getting out of bed or standing after sitting, its been a learning experience.

Thank you to all for your advice  and tips.

Jon


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Dona
 Dona
Estimable Member
Joined:7 months  ago
Posts: 219
20/05/2017 11:50 am  

Cassoday, thanks for telling us your story. It very interesting ,  you have had a challenging road. Good luck in the future and let us know how its going.

 

Re : hernias. I have a peristomal one ( I wrote about it somewhere in these forums ??) that is going to be repaired this coming Thursday.( 25th May). I want to get this sucker fixed before my illium slips out of my abdominal wall again ( ouch ). I went for pre op visit yesterday and they said its two hours or less of surgery! Not bad considering what we have all been through already.

I 'll let everyone know how it goes ( one or two nights in hospital).


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Cassoday12
Active Member
Joined:6 months  ago
Posts: 12
20/05/2017 2:16 pm  

Good luck with the hernia surgery Dona, hope everything goes well and you can be out of the hospital lickety split :) I am so grateful to have found this site and all the wonderful caring people here. Let us know how it all goes, will keep you in my thoughts and prayers.

Susan and *Lumpy the happy dancing Stoma*

Susan Mueller


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Dona
 Dona
Estimable Member
Joined:7 months  ago
Posts: 219
20/05/2017 2:44 pm  

Thanks Susan, I will take all good thoughts and prayers sent my way! And, Lumpy! HA.. I wonder how many people name them? I love mine ( like so many of us, It means I am alive) but it doesn't have a name yet.

And yes!!! This is a great site, thanks to Eric. I trolled long and hard through Youtube to find it...there are so many awful and useless things out there. I was dealing with leaks at first, and this place really helped me.


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Carolyn Reinhart
Eminent Member
Joined:7 months  ago
Posts: 22
21/05/2017 6:36 pm  

I have a parastomal hernia and also a twist which sometimes occurs in the ileum. It comes upon me suddenly with severe pain, nausea and some vomiting. My surgeon said that she doesn't want to operate and repair it since it often doesn't work. The only thing I can do is to go to ER, not drink, get an iv, get pain and nausea meds in ER and have a CT scan to see what is happening. Then they admit - nothing my mouth, eventually just fluids and then soft food, if the stoma is working again. I've only had the ileostomy for 1 year and got the hernia quite soon afterwards. The blockages started occurring after 8 or so months. 

Does anyone have any situations which are even somewhat similar?

Carolyn Reinhart


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Dona
 Dona
Estimable Member
Joined:7 months  ago
Posts: 219
21/05/2017 7:00 pm  

Hi Carolyn,

I am sorry to hear you have a hernia too. It sounds a lot like the one I have. ( peristomal ..right next to my stoma). I get the same symptoms when my illium becomes incarcerated ( it slips out through the hernia and is trapped in the abdomen wall). I agree it is not pleasant. It was recommend to me to get it repaired 'sooner rather than later.'

I am having it repaired this coming Thursday ( 25th May). After three of these events .twice to the ER repair was recommended.  My husband and I did some research and found the article. I have attached the link to the bottom of this note. Pay especial attention to the part called:

Discussion regarding choice of a type of parastomy hernia repair.

In that section it talks about the rates of success of the different types. My surgeon is doing the Sugarbaker technique ( there is an illustration) and it has a more than 90 % success rate. I agree, the rates of the other two types of repair are not good. Not every surgeon does this. This technique  has been in use for about 10 years. I suggest reading this, getting more information and then talking to your doctor. Maybe they can refer you to another surgeon. The first one I was referred to didn't do it ( just regular hernia repairs...not involving stomas) and she referred me back to the surgeon who preformed my colectomy and illiostomy ( two years ago). That surgeon then sent me me to the surgeon that specializes in this type of repair. I am lucky to be in an area with a medical school and attached hospital.

Good luck and let us know what you find out.

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


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Dona
 Dona
Estimable Member
Joined:7 months  ago
Posts: 219
21/05/2017 8:16 pm  

P.S> i forgot to mention that my surgery will be lapriscopic ( spell?)  , and minimally invasive. The pictures in the article  mentioned in the previous post show a large incision.  The repair I am getting will take about two hours and leave me with two new holes , one on the right and the other on the left of my abdomen. The mesh is held in place with a bunch of little stitches all the way around. This doctor is well aware of the need to keep the peristomal skin in good shape and intact. He said they put them so far apart in order to reduce  the chance of any stomal output getting on them while they heal.

sorry this is so long!


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