Seeking Advice on Sugarbaker Surgery for Hernia Repair

Hi everyone, I am hoping someone can help me. On December 1st, I will be having surgery for a hernia repair. But this one is different from a normal hernia repair. One year ago, I had my hernia repaired
during emergency surgery because of a blockage. I got very sick because of a bad infection in my wound, which turned into sepsis. It took months for me to heal. Needless to say, the hernia repair did not work. I am having it fixed again but with a newer procedure called "Sugarbaker surgery for a parastomal hernia". This surgery has a better chance to work long term. I am told the recovery is quite painful and long. I apologize for rambling on, but my question is: has anyone had this procedure? What should I expect? Thank you for reading this.

I have not had this procedure, however the subject of hernia concerns me. How did you get a hernia?

Hi ycats - yeah, the doctors don't bother to tell you the risk of hernia after our surgery. Mine didn't. There's a lot of things they didn't tell me about 'after my surgery' that if I had known I may have made a different choice. I am dealing with a possible hernia now too. If you can get your reversal, go for it. I didn't think I would ever ask to be re-connected after everything I've been through but I'm getting tired of all the little 'surprises' that keep popping up - so I might ask for a reversal at some point. Enough with the surprises and lies, medical profession.

Hello Pammer.

I have no experience of this but the best of luck with your procedure and I hope you will keep us all informed as to how it goes and how it progresses in the longer term. I'm sure all us folks with hernias will be grateful for the feedback.

Best wishes

Bill

I had emergency surgery a year and a half ago - ended up with a colostomy. No one (doctors and nurses attending in the surgical unit) told me anything regarding aftercare really. What they should have said is that I should have had a binder or girdle-type thing on as I coughed in my sleep and woke up to a parastomal hernia. It is about the size of a third breast! No small thing. It rises up underneath my stoma.

You can imagine how difficult it is for clothing choices, etc. I got a kick out of someone else on this forum celebrating getting into low-rise jeans! Well, that is never happening again for me.

I did find some literature since then that recommended holding a pillow over your tummy if you need to cough or sneeze, and also advising not to lift anything more than 8-10 pounds.

I feel that the medical professionals who do these types of surgeries (my doc referred to it as a plumbing job) need to be more empathetic and put themselves in the shoes of the patient. Then, maybe they would understand some of the problems caused by their actions or non-actions.

Also, it takes about a year to get over this surgery... so be kind to yourself. The professionals say all will be okay by 6 weeks. Liars! From my experience.

At the moment, I am on a waiting list (for the last 7 months) to have a reversal. Being in western Canada, the waiting list is humongous because all cancer patients come first, as they should. Also, the doctor only gets to do the surgery 1 or 2 days a month!

So do not get a hernia, take care of yourself, do not lift or try to move anything.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

I am also in Canada and have found the same things you have, Scottie. No info at all, especially regarding possibly hernias. They didn't tell me a thing. I am wondering if I have one. You said you are getting reversal surgery. What are they going to do with the hernia? Fix it at the same time or?? I'm curious because I am kind of in the middle of trying to make some decisions as well. They lie. You got that right! How long was it for you before your hernia showed up and did it become painful or create a blockage? Thanks.

I also have a peristomal hernia (large) after having an emergency colostomy surgery. I also had sepsis. The hospital figured I could go home after 6 days... I was in for 19 days, and came home almost unable to care for myself or even walk without the use of a walker. Prior to this, I had been able to dance, run, climb stairs, etc. After being home for 2 weeks, I experienced vaginal bleeding and went back to emerg where the doc said I was only constipated and should go see a gynecologist, even though I told him I had a hysterectomy years ago. And, of course, you know the routine for getting to see a specialist (gynecologist) would be to go to your family GP, after waiting for that appointment, then wait for the specialist appointment. I was bleeding badly. This doctor was really more of a joke.

That day, I went home, went to sleep, woke up in a pool of blood despite having a pad on, and then had to call 911 so the fire dept and paramedics took me back to the same emerg. Thankfully, it became clear what was wrong with me when I got a different doctor. I had 2 different large abscesses in my abdomen, one on the colon, and another that had eaten through the old hysterectomy surgery site, thus the vaginal bleeding!

I was in the hospital for a further 4 weeks on heavy-duty antibiotics to control the infections and sepsis in my body. During that time, I must have coughed in the night while asleep and woke up with a large bulge under my stoma. A peristomal hernia. It is the size of another breast. Nobody (medical pros) told me I should have a binder or girdle on to control the possibility of a hernia. Later on, I read that one should hold a pillow on the tummy if sneezing or coughing. It is a mystery why the doc or nurses could not have told me beforehand.

Now, I await reversal and repair surgery. The doctor is only allowed 2 operating days a month and has a large list of cancer surgeries which come first, as they should. I have been waiting a year so far.

I am in B.C. and very long lists for all surgeries. I was interested to hear of this Sugarbaker surgery which I will approach my doctor about. I really want a successful procedure and have even considered just living with this situation as the risks of surgery are also big.

Scottie, sounds like a nightmare. We all have 'em I think - lol. I am just too lazy to post all of mine right now but suffice to say I totally relate to the things you said about our medical system and stupid doctors and us having to call 911 and rushing off to the ER because our GPs are basically little 'referral services' who are worried about libel, and I don't know about you, but my GP SUCKS and does nothing for me. Whenever I have a new problem he says 'There's nothing showing up on the scan (that they took two months, three months, six months etc. ago). I can't stand going to see him anymore.

I am so sick of the politics involved with our doctors. Don't get me started. Anyways, are you able to private message? I am not a paid member so cannot initiate a private message, but I see you live in Delta, I used to live there years and years ago so would be interesting to talk with you not on the boards. Were you at Surrey Memorial for your surgery?

Also, is your surgery scheduled yet? I am waiting since a referral last MAY to see a gastroenterologist. Phoned them today and they said next APRIL. I am like 'I'll be dead by then!'.

??????? - Well, not sure what that is all about but this is a ten-hour surgery for cancer. It removes all organs from the person's body and soaks them in chemo. I would rather die than get this. This can't be what you are talking about. Is it?

https://www.washingtonpost.com/lifestyle/style/the-sugarbaker-procedure/2012/11/25/472316b4-35b1-11e2-bb9b-288a310849ee_gallery.html

Whoops, I should have googled a bit harder. This makes more sense for the parastomal hernia:

http://www.mdedge.com/acssurgerynews/article/97751/general-surgery/modified-sugarbaker-enhances-parastomal-hernia-repair

I am 5 days out of surgery for an incisional hernia following my ostomy reversal. Mine was done laparoscopically with robotics, whatever that means. I'm not familiar with your surgical procedure.

I still have a lot of pain, but I only have 3 small incisions that are glued and don't require dressing. I was able to shower in 36 hours.

The pain feels more like my C-sections than the colostomy.

What I noticed in discussions with my doctor was full sympathy and a guarantee that I'd get fixed asap. In reality, I'm being treated as if it's "just a hernia." It took a month to get on the surgery schedule. I, too, was given no care instructions or prep instructions either. The office didn't return my calls. I received mail the day of surgery telling me SOP (nothing by mouth) after midnight, but I had a prescription for Golytely at Walmart, but they were out of stock. Omg, I was going crazy and being told, "don't get excited."

My check-in time for surgery was changed 4 times, and once was scheduled at her office! Of course, that was on Friday night when no one was in the office for the weekend.

Sorry, but I forgot all this. My go was who ordered the CT scan, and he prompted me to reach the surgeon right away, but the appointment desk wouldn't make an appointment until the doctor reviewed the report. I didn't know it, but they had sent the report the same day they told me. When I got ahold of the office, some Barbie girl said she had the report, but the doctor said it was fine, but if I really needed to, I could make an appointment. So another 10 days passed, and when I got to the doctor, after talking to the front desk, talking to the nurse getting vitals, the doctor had no idea why I was there and further had to track down the report because it wasn't in my file!

Like some of you, I had no clue how hernias work or happen, so I sat around trying to figure it out and researching online. The folks I knew who'd had surgeries had more than one surgery. Some had current hernias they had not seen a doctor about. Mine hurt! And it was just a bump. Then I carried some BLANKETS (!) down the hall, and I felt something. I laid down, I thought to pass some gas, but right under the skin near my stoma scar, I felt part of my bowel poking out and folded in half, and it was creepy. Stupid me, I'd heard of people pushing it back in, and I probably almost killed myself trying it.

Mom so afraid of getting another bag that I got a ride to the ER right away! By the time I saw a triage nurse, he didn't even sit up to talk to me. He told me pain did not mean emergency surgery. He said when it hurts more than anything I ever felt to come back. When I pressed him, he said as bad as having a heart attack feels. Omfg, I've never had a heart attack, so I finally got him to add vomiting as a symptom.

Matter all that ranting, again I'm sorry, but it's allowed here, I'll tell you what I did, in practical terms. I didn't lift anything more than 5 lbs, and that's pretty much nothing. Not even my purse. Laundry was a problem. I quit taking aspirin so I'd be ready for surgery any time. I wore baggy pants with a drawstring, but I started wearing panty girdles, making sure I was dry enough (after shower) not to struggle pulling them up. I didn't wear anything that cinched up right at the waist except the girdle. I kept a small pillow or stuffed animal near to hold against my stomach when I coughed or sneezed and a big pillow when I stood up from sitting. I doubled my stool softeners not to make bowels fluid but real soft. Think how it had to go through that loop and back down in a less than 45-degree turn! I quit bearing down to poo or bending over to pick anything up.

Might hurt then and now to have a full bladder, and then it hurts when it's empty. By the time I had surgery, just a couple bites of food hurt, and I had trouble swallowing.

Right now, it hurts when I take a deep breath and when I yawn. At first, you have mucus to cough up from surgery, and that hurts real bad. Getting out of bed without rails is bad, and having to walk with a nurse always pisses me off.

My grandson stayed Saturday night to take care of me, but he really was killing me. He showed me those iTunes fails video, and it hurt so bad to laugh, but I couldn't help it. Just sat here hissing out a laugh with my eyes running.

I know I've written a doggone book about nothing here, but I'm leaving it as it is. This is a problem that I have, but since I talk a hundred mph, it doesn't take long at all lol

Good night now. Hope I helped some....WAIT! We get these hernias because a stitch slips on our incision, so there's a gap the intestine bulges out of. My doctor said she made certain to make my stitches solid. She also stitched some kind of mesh in there to fix the hole instead of stretching intestinal skin together. I'm hoping my body doesn't reject the foreign object. Last word, I read that hernias near an active stoma sometimes don't heal right until they close that stoma site and cut a different part of your intestine to move your stoma on the opposite side from the hernia, and STILL you might get another hernia. That scares the hell out of me!

Happy Thanksgiving! Charlotte K63

I have to interpret for my iPhone's mistakes. SOP means standard operating instructions but no bowel prep. The GoLYTELY is what they order for us to flush out every last drop, cleaning out our bowels. Surgery check-in times kept changing and it couldn't be done in her office. The second person I told my CT scan story to was the nurse who took my vitals, but she wasn't nude. It was my regular preferred physician who ordered the CT scan. My grandson showed me YouTube failed videos that dare you not to laugh.

People who have had hernia surgery seem to have had several hernia surgeries. I am scared to wake up with another ostomy bag, not my mom. After all that ranting, whenever I emptied my overfilled bladder, the empty space made my hernia hurt more than when full.

I'm done now, just wondering if you can envision someone saying all this in less than a minute. I mostly have people nodding their heads at me, acting like they've understood every word while trying to get the heck away from me!

Bye now, let the holiday madness begin tomorrow! It's more fun to join them because you know you can't beat them!

I am so sorry to hear you are having hernia issues. Before all my surgery, my GP said just remember any doctor can take out a colon -- but not just any doctor will get you well again.

My surgery do's and don'ts list included using a pillow whenever coughing -- and that means after healing too. No really spicy food as it can cause tissue reaction -- and as much as I knew this, I accidentally got into some and had a massive reaction....won't go there but the doctors that are really into ileostomy care do know what is and is not okay. I was told not to lift over 5 lbs the first 6 months and then it was more, but I am not supposed to ever lift from the floor -- without protection and even then it can cause a hernia.

My daughter, who also has FAP, said that in the UK they automatically take out the colon on your 18th birthday year so that it cannot create cancer...well, I have issues with that approach, and could go on about that.

I also nearly lost my relatively young (40's) neighbor several times this year as he developed ulcerative Crohn's disease creating massive colon issues. He was so bad for awhile they could not operate on him. However, he is on a very new medicine now that is working so beautifully that he is not to have surgery until that medicine stops working... then they will take the colon.

Is there any way we can push to have a treatment plan booklet created and guaranteed to be given to patients? They have stuff for everything else under the sun in the waiting rooms. Maybe we need to be engaged in a proactive plan --- I just don't know the protocol but it seems to me this is not a small issue, especially if people are not getting proper care.

How did your surgery go?

Hello again, I thought surgery was fine and I was feeling human again. Scurrying around doing as much Christmas stuff as I could with my limitations. Got all my shopping done online and handled my mom's too. Then the last few days I've been sleeping and can't wake up.

Yesterday I said to a friend my mom's been bugging me about doing too much but I started hurting after laying around for days. Lo and behold, I woke up this morning bleeding from my stoma scar!

I'm trying to not be scared. I have so much to do yet for Christmas. The surgeon's office is not picking up calls so I emailed my doc. I don't want to alarm anyone yet. This really sucks.

I don't know about never lifting anything from the floor over five pounds. Some of us live alone and have no choice, that be me. I have to lift water bottles off the floor (only the smaller ones, I won't and can't tackle the large ones), and they are well over five pounds. I have to carry my own grocery bags and they are well over five pounds. So how can you carry on with life without carrying anything over five pounds? I'm serious. How is one supposed to do that, and are you sure you can get a hernia from lifting something that is five pounds? I've never heard of that till now.

I was reading back your other posts and think you may have answered your own question here. Your hernia was near an active stoma and you mentioned that this can cause further bleeding and hernia possibly. You said you have some bleeding and you are very tired. Stop doing things for Christmas, we women are notorious for killing ourselves and abusing our bodies trying to make others happy. I hope you don't end up in the hospital for Christmas but your health is more important than Christmas. Please take care of yourself.

I agree entirely  with HarleyDoll. There is absolutely no reason for the work at Cristmas to fall onto just one or two people's shoulders. It is surprising what happens when you down tools and say you would rather not have celebrations at all than make yourself ill havig to work so hard at them. This year my daughter and her family are doing everything for the kids on Christmas day and have invited us around to join in. Now there is a pleasant exercise in role-reversals and they are much younger and more enthusisastic about the whole thing than we are.

Seasons greetings and best wishes

Bill

Ok, I gotta ask... Where are these women? 

Pretty much every woman I know. It seems to be in our genes or something - lol.

Bill, I am curious what you think of this five-pound limit.   For lifting.   Forever.

I don't know where to start! Bill, my purse weighs more than 5 lbs. EMPTY! My little bitty dog weighs 15 lbs. It isn't only lifting either. I find that struggling with some things to avoid lifting has a resistance of more than 5 lbs.

Heck, if I did hurt my own self it was dragging kitty litter from the front porch delivered by Amazon! That's ridiculous!

It's just me and my mom here and while I like things "nice" for her it is only me assigning work to myself and I admit I'm a very contrary worker. I just like to be surrounded with the Christmas mood! Maybe it's a disease.

I also like to "make" things for Christmas even though folks don't appreciate it. I make jewelry and print out pictures I then have to frame. I make tee shirts or I should say I decorate tee shirts. I'm making simple knot-tied fleece blankets and I'm making Amish friendship bread to gift out. Christmas brings out the best in me, I think.

Well, my doctor had left me a message to apply pressure to stop the bleeding and see her on the 4th, and that's what I'm going to do even if it's not an answer.

I'll continue to try to take it easy even while I'm feeling guilty right now for not getting anything done. Lol. It's the nature of things but thank you all for listening to me.

I'm one of "those" women and I'm right here in California laughing at myself all the way.

Merry Christmas, Everybody!

Hello Harleydoll & Charlotte.

Well! I usually have a view on most things once I am triggered by a question and the five pound limit is no exception.

I believe that for the first six to twelve weeks after surgery almost nothing at all should be lifted if you don't want to get a hernia. Mind you, my hernia came with the surgery, long before I even got out of bed, so that theory is really a shot in the dark.

As I see it the 5lb rule is a bit preponderous in that you own arm will weigh more than that when it is extended to full length. However, if it then has something else attached, it will act like a fulcrum and the weight of the object will increase proportionately to the distance from the fulcrum point. So, if you must lift anything, it should be done as close to the body as possible, if not actually resting on the body in order to take some of the weight.  This is why they often warn us about lifting kettles because they are the most common of 'heavyinsh' things we are likely to lift without thinking about what we are doing.  

Just a cautionary word I'll share, that I was told many years ago when someone stopped me doing something I would have done naturally. Many people get groin hernias by shifting/sliding  stuff on the ground with their feet in a sideways movement. Apparently, we never normally use those muscles during the usual movements of the day, then suddenly we put them under enormous strain because of the fulcrum effect and BANG! you have a hernia.

For my part, I took it easy for the fiirst six weeks and then gradually increased the excercises that that would simulate lifting and moving etc. I quickly decided that one of the most obvious preventative things I could do was to get a hernia belt and I've been wearing one ever since. Recently I've had problems with my back and bought myself a back brace. This gives me  much more support to both my back and the area around my stoma but I don't think it would work very well if you have to wear a bag (I irrigate so I can wear a stoma plug). In any case, I am told that the back brace should only be temporary as it will make the muscles weaker if it is used for too long.

So it seems you can't win either way. It's just a matter of being as careful as you can be under the circumstances.  Whatever you are doing,  always bear in mind that the further away your arms are stretched from the fulcrum point (your shoulder) the more strain you will be putting on all the supporting muscles.  

Have A happy holiday   

Best wishes

Bill   

Dear Bill,

Thank you very much for that careful analysis of the problem, though I found my eyes glazing over when you tugged on my learning limits.

I'm just kidding, but it is problematic for me since I am shaped like a box that barely reaches 5 ft. 2.

You did mention a point I have not considered. I was giving only one instruction: don't lift anything over 5 lbs. No information about belts or exercises or therapy.

That's left me in my old world trying to "take it easy" while nothing gets done unless I do it. If I'd been given something to do, it wouldn't be so hard. Proactive would surely help as I also feared losing what strength I have.

Good job, Bill. I thank you very much.

Hello Charlotte. Thanks so much for your input on this subject as it's sparked me off on another verse - with a hint of cynicism  (see my blog).

Obviously, we can go way over the top in trying to prevent hernias, but to do that we would be missing out on living life itself.   There are some exercise regimes that help build up muscles after operations with minimal risk and that's what I have been doing. However, as I said before, my hernia came with the operation so there was little I could have done to prevent it. My regime is simply to try to prevent it getting worse.  

Besrt wishes

Bill 

Hi Harley doll, somehow I missed this part of your post discussing how difficult it is to have a weight limit when you have to do it for yourself and I absolutely agree with you.

I try to maintain my chores because they will still have to be done whether I let them pile up or not. It's so depressing to enter a room and see crap piling up that I know I have to handle. Yet my support system says it's just a hernia, don't be so dramatic. As if what they're suggesting I'm not as "sick" as I think I am. These are my own children! I've never been a slouch and don't intend to be one now.

That was an easy fix. I quit asking for anything and only talk about dr. visits when asked. I told them I'd ride the bus the day of surgery, no sweat!

Did I mention I don't have a car? I live with their 90-year-old grandmother and they don't want to help me get groceries? I have relatives 2 blocks from me that wave as they drive by and see me pulling my shopping cart filled to capacity.

That's the other thing, since I take care of mom, my sibs think they have something to say about how well I clean the house, sick or not. That puts pressure on me to keep it up as well. These are the same people who ran out of volunteers to stay overnight with mom so she wouldn't get scared. Yet they don't visit her and spend enough time with her to see if she's well or not.

I propose to make a sign and stand on the main fare that says "worker wanted" to cut the grass and change an outside lightbulb.

Sorry for going off. But it makes me nuts that I too "be that person. Yet it's not enough. I'm not even free to get well.

Thanks for listening,

Charlotte

Hello Charlotte.

Thanks for your post and we are definitely listening. It is so unfortunate when one person gets left with the job of caring and yet there are so many others who will look on and do nothing to help or, perhaps worse,  have something to say about they way they are doing it. I have come across it so often and felt it 'unfair' so, being of a rhyming bent I have put pen to paper several times on this subject and will share one of my efforts below. Look at it as a season's message from  me! 

Best wishes

Bill

WHO CARES FOR THE CARERS.

Caring is a selfless task
done by one for others.
The sort of task that children ask
of fathers and of mothers.

Caring can be caring ‘for’
of that there is no doubt.
But surely it is so much more
if carers care ‘about’.

Carers deserve a great respect
for all the work they do.
It shouldn’t be what we would expect
of these selfless few.

There’s many reasons people care
and carers care a lot.
In every season they are there
so the cared-for’s not forgot.

But who cares for the carers when
their energy is spent?
How many people are there then
and how many are absent?

When a carer starts to tire
desiring a well-earned rest.
Many things will then conspire
to put them to the test.

A carer’s work will take its toll
and it’s not for everyone.
Who is there to take that roll
that no one else has done.

What happens to a carer’s need
to stop just for a while.
Who steps up to do this deed
and go the extra mile?

B. Withers 2013

Thank you, Bill! That was great! And what a nice gift to give me for the holidays.

Wow... was going to post a question looking for a surgeon who does the Sugarbaker procedure. Have done a lot of research and feel this should be the gold standard for hernia repair... 85-90% non recurrence after 5 years. Have not read any negatives i.e. increased pain. Are you going to be operated laparoscopically or incisional? Talk to your surgeon to see if he's aware of injecting Botox into the abdominal muscles too. Very positive outcomes with general hernia repair... relaxes the muscles and aids in the healing process. Decreases recurrence too. Good luck.

Sorry Skidude. I didn't intend to monopolize the whole conversation even though that's exactly what I did. I'll try to stick to the subject in the future. Is there a forum subject called "Ranting and Raving and Boring Everyone?" I will find or make one.

Bill, can weight gain cause us to get a parastomal hernia? I gained about 30 pounds over the winter due to a number of factors, among them quitting smoking and also after my bowel surgery I started to eat again but my body was still in "starvation mode" (which it had been for two years when I was very sick and lost 60 pounds). But once I had surgery I could eat again and that was nice, but my body being in starvation mode means that anything I eat my body wants to 'hold onto' and turns it to fat right away, stores it, almost like a bear who has been in hibernation or going into hibernation. It's weird. But anyways, could this kind of weight gain cause me to get a hernia? I always thought I was getting one but they kept telling me no, no, no, but now, after the weight gain it does look like a third breast and it is very hard to the touch at times, nearly all the time.