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jonlyo
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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).

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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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
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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.

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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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
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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

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
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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!

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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22/05/2017 6:57 am  

If you have research showing the 90% success rate I'd been interested in seeing this. The figures that I have seen (using mesh) vary between 25-75% with the success rates varying immensely due to factors such as tummy fat around the abdomen, how damaged the abdominal wall is due to previous surgeries, the type of mesh used, the size of the hernia, whether this is the first or subsequent repair etc


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carolynreinhart
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22/05/2017 12:55 pm  

Thank you for writing Donna. I wish you all the best with your surgery on Thurs. 

Thanks, too, for sharing as you did and for sending the information about repairs. I did a lot of research after my surgeon told me about my kink etc - that is, after the ileoscope a few weeks ago. She said she would operate but then when I went back a few weeks later she had changed her mind. She did mention the SugarBaker and apparently there is only one surgeon in Toronto that does it. I live in Huntsville, On, about 3 hrs north of Toronto. I am almost 76 now and your photo looks like you are younger. I think that she thought that I was too risky to do. Sometimes they move the ileostomy to the other side but I have a hiatus hernia there so they can't. 

My original surgery was done laproscopically too and took 9 hrs. and then 4 days later I went back to ER very ill and a scan showed I had 3 thrombosis in the vein going to my liver so I got put on warfarin. But a few days later had a hemorrhage from a duodenal ulcer which I didn't know I had - nor did the doctors.  They found me on the floor in a pool of blood in the night and it took a long time to revive me - they couldn't find a vein and I was very close to death etc etc.

So, I think that my surgeon is nervous to operate now? I would very much like to hear how you make out. I have asked for a 2nd opinion in another bigger city so we will see. I have had 4 blockages and they come on so suddenly it's frightening. Then you have to be near a hosp and they have to know what to do etc. I have written it all out for them in case I have to go to a strange hosp when visiting family elsewhere. 

I like the article you sent. I hadn't seen that one and the diagram is very clear. It's the best article I've seen. Thanks.

Please keep in touch and take care,

Carolyn

Carolyn Reinhart


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carolynreinhart
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22/05/2017 1:02 pm  

Hello, 

I have just written a long reply to Donna about my parastomal hernia. I have had 4 blockages due to a twist which sometimes occurs at random and that is very painful. I have been told to wear a hernia belt and so had one custom made by someone near Toronto, On. It does feel very supportive but my surgeon says that it can't really stop the twisting which happens. So? 

I have only had my ileostomy 1 year now and am happy with my appliances thankfully. I belong to an Ostomy Chapter here in Huntsville which is very helpful. We can share and learn together and we all have very different experiences and ostomys. 

I find that, for me, diet plays a part but am still figuring it out. That is what to eat and when etc. 

I would appreciate any correspondence and sharing back and forth.

Thanks

Carolyn

Carolyn Reinhart


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carolynreinhart
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22/05/2017 1:04 pm  

Hi

I haven't had surgery for my hernia so am afraid I can't comment. Good luck with your searching. 

Carolyn

Carolyn Reinhart


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Dona
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22/05/2017 1:11 pm  

Yes Sarah, here is some more information:

 

 

What are the options for surgical repair of parastomal hernia, and how effective are the various options?

 

A review of parastomal hernia repair methods was published in 2014.

 

Parastomal Hernia: A Growing Problem

with New Solutions.  Christopher T. Aquina James C. Iannuzzi Christian P. Probst Kristin N. Kelly Katia Noyes Fergal J. Fleming John R.T. Monson. In Digestive Surgery Vol. 31, pp 366-376, 2014.

 

The article is available at: https://www.karger.com/Article/FullText/369279

 

The section titled Surgical Treatment presents a discussion of eight available methods for surgical repair of parastomal hernias.  

 

The recurrence rates (percentage of patients who experience a parastomal hernia after repair) for the various methods are shown in table 3.  These results are for studies published between 1990 and 2014 and that included a follow-up of one year or more.

 

The method with the lowest recurrence rate is the “laparoscopic mesh – sandwich technique” with a reported recurrence rate of 2.1%.  The Sandwich technique combines the “keyhole” and Sugarbaker techniques.  The medical community is still uncertain about the best procedure.  The authors say,

 

Unfortunately, it is difficult to make any definitive conclusions about which techniques are superior due to small sample sizes, short follow-up periods, and lack of randomization in most of the studies to date. While mesh repair does appear to have lower recurrence rates than suture repair and stoma translocation, which type of mesh is superior remains a topic of debate. Larger randomized controlled trials comparing the different techniques and mesh materials would be the ideal approach to formally critiquing these different methods of PSH repair.

 

The small numbers of study participants who received the laparoscopic sandwich treatment lead me to suspect that this procedure is not yet widely available.  It is a complex surgery and may require specialist surgical skills.

 

In Table three  , I am getting the last one ...It has the 2.1% failure rate. The samples are small, but its a start. I figure I have 100% chance of another incarceration & trip to ER if I do nothing.

I hope this help. I will post again soon with further thought.

Best wishes to you all and thanks for yours!

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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