Concerns about Huge Parastomal Hernia and Reversal Success

A melon-sized hernia appeared overnight. It is uncomfortable, but I'm worried about a few things.
I want to have a Hartmans reversal in 12 months, and I'm worried if it will affect the reversal. They want to do the op at the time of reversal, but if it gets any bigger and if they have to operate sooner, will that reduce the chance of success?

Also, I'm worried about bowel strangulation as I already live with PTSD from almost dying from bowel perforation. My fear is escalated with the arrival of the hernia.

Lastly, it's so visible, and I feel like such a freak with a huge one-sided hump. Does anyone else feel self-conscious, and how large are your hernias?
Peace, bluebel

I have a parastomal hernia, which is the size of a melon, on my left side. I have had it for about 5 years now and have experienced some complications, such as blockages, etc. I have undergone 6 surgeries in an attempt to repair a rectovaginal fistula that I have. The most recent surgery, which involved using a muscle flap, was performed on January 11 of this year. Hopefully, this surgery will be successful so that I can have my reversal soon. My doctors also plan to perform the hernia repair along with the reversal at the same time. I would appreciate it if you could keep me updated on what you find out or how you fare with your surgery. I have also wondered about everything you are!
I understand how you feel about being self-conscious about the hernia; I feel the same way. I just have to wear clothes that cover it, which is not very attractive! Take care of yourself, and I hope everything works out great for you.
Tracy

My hernia has steadily grown since surgery over a year ago... I hate it!! I ended up getting a band they use for exercising to keep it from swelling during the day's movements. It seems to help quite a bit more than other things I have tried and pretty cheap. Even though I have Crohn's, a reversal still sounds good to me!! Please let us know how things work out. Wish you the best too!

Hi girls, I'm about to put this question to the test this Wednesday. I'll be having a colostomy reversal along with hernia repair. I'll try and keep you posted although it may have to be by blog for the time being as I can only use my BlackBerry....my poor old laptop died last week. My surgeon couldn't promise much with the hernia repair right now as he'd have to wait and see how things were when he opened me up. I'm putting all my trust in him and will let him decide when he opens me up. But I'm hoping to have the two done together right now. Take good care, Colm

The very best of luck to you, Colm. May your surgeon's hands be held by God's. The news of success from our little family, like you and Bag 'n Drag, does so much to keep us hoping. Now that Carol has left us, we must be especially vigilant to help one another stay upbeat and hopeful. Like you, I was too ill to use my laptop in the hospital last week, so I could not respond to anyone, and then the news of Carol's passing made it even harder to type through the tears. I'll be praying so hard for your complete and total recovery.

Loretta

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Typically, the parastomal hernias are repaired during reversal. A mesh of some sort is used to hold in the intestines that are slipping through the muscle wall as a result of the stoma.
I have a melon-sized hernia myself. I wear a Nu-Hope (check out their website) belt that thoroughly supports the hernia and prevents it from getting worse. It also makes it feel better and prevents the heaviness of the hernia from creating discomfort.

I had to find the belt on my own. The ostomy nurse said nothing. If I would have used it right away, I probably would not have had such a big hernia now. I also wear the belt 24/7 and use a smaller one at night to sleep with.

Good luck with the reversal. I am too chicken to think of having this done, although there is no good reason not to have it for me.

Hi there,
My husband had a colostomy reversal 12 weeks ago and a hernia repair in his stoma site done at the same time. He is still very tender in the area where the stoma used to be, and the moment he starts doing anything, he gets really sore. He still has a deep pocket in the main incision where the bowel was reconnected, as he developed an infection and originally had four open tunnelling wounds. Not an easy recovery, I think. When the doctors say that the reversal is an easy surgery compared to the first one, they are full of ??xxx%%. Good luck with your surgery, and hopefully everything will be fine.

Thank you so much, Loretta! Hopefully, this time tomorrow I'll have the surgery over with. I certainly appreciate your prayers, and I feel that Carol may be up there batting for me too. I miss her terribly too... she was a great mentor here, and I hope the administration leaves her posts up to show the inspiration she was. I know I'm all the better for having known her. I do hope things have settled a little for you, and you're happy with your new plans. Stay focused and look forward, and you'll not go far wrong. As for looking out for each other, I know how much this place has meant to me, and I want to continue to take part and offer as much support as I can. I'll hopefully be able to post fairly soon on the blog 'Countdown Begins'. So take very good care of yourself, and with God's help, we'll chat soon. Colm

The best of luck with your surgery. I pray everything goes well and will keep you in my prayers.

Colm, first, good luck with your surgery tomorrow. I know you are in good hands at the hospital you are going to, but I will be praying for you and hope you have a speedy recovery. You have waited for this for so long, so I am sure you are happy to get it done. I will be waiting to see your post on how you are doing. My prayers have been pretty powerful, so tonight I will pray for you. Your friend, Joyce.

Colm, good luck with your surgery.
I will see doctors in March at a university medical school about my parastomal hernia, which extends out about 11 cm and is about 25 cm across (about the size of half a basketball). I would recommend wearing a Nu-Hope belt immediately after the surgery, then tapering off wearing it about 6-8 months after the surgery. Some people may need to wear one for a year or longer. The medical school that I am going to has a Colon and Rectal Surgery department that teaches this kind of surgery. I know this means lots of residents and interns poking and prodding me both before and after, but it has to be better than the Department of Veterans Affairs surgery done by someone who claimed to be a general surgeon.
In my case, they will resite the stoma and repair the hernia, and I hope they will repair any other damage that the person at the VA did when he had me open. I had to wait for my 65th birthday and got Medicare insurance.
I don't go out as much with my hernia, and I stopped exercising. I could go on about how much it bothers me, so I know how you feel about your hernia.

Thanks for all the replies.. I'm definitely not alone with the melon! My stoma nurse said.. why are you not wearing a belt to have prevented one! But I didn't know about belts until now!
Good luck with your surgery.. Let us know how it goes. Peace, Bluebell x

I had my reversal and hernia repair surgery two weeks ago. My surgeon had to do an ileostomy on my right side to give the colon time to heal. He also repaired my hernia and did a tummy tuck. I need to have another surgery in about 4 weeks to reverse the ileostomy. I saw him today and he said when all is said and done, I'll no longer have a bag and will have more of a waistline as a fringe benefit. He seemed really positive so we must wait and see. By now you have had your surgery and I pray all went well for you. Hopefully, you are feeling better. The first two weeks are tough but I definitely feel better now. Take care. Mary Jayne

That is the kind of good news that keeps me hoping, Mary Jayne. No bag and a waistline. I can't even remember what that was like and it's only been 3 years. I'm getting very nervous as my colonoscopy date approaches. I just feel like these small town doctors, as Carol Dawn said, "don't know anything about ostomates". I have found so much more help and advice from this site in a few short months than I have from dozens of doctors in 36 months. I wish I could find a positive doctor like yours seems to be. Keep us posted. This is so exciting for me to hear all the success stories on reversals coming in lately.

Loretta

Vietnam,

Where do you live? You said you had to wait until 65 to get Medicare. Did they pay for a reversal? Was it because it was a part of hernia repair? Did you get mesh? Are you scared of all the ads on TV about mesh? I am. Please tell me more about the hernia belt. Should I be wearing one? I called NuHope and they got me fitted, then sent the request to my PCP, and I never heard back from them. Or is the belt only for post-surgeries?

Loretta

Hi Bluebell, I also have a melon-sized hernia, and since I have had a chest infection this week, it is now even bigger - a watermelon - but I have a belt that I have to wear which has been specially made through the hospital. Your stoma nurse should have referred you to the Orthotic Dept. of your hospital. I agree that you are not given nearly enough help and aftercare, and had to get upset before they would do anything. My surgeon is very good though. I personally can't have a repair as I can't have any more surgery because of my heart, but the belt does help enormously. Make sure and get referred.

Hi Bluebell,

When I was in the hospital last week, the CT scan showed a rather large hernia behind my stoma. I didn't know about belts, either. I followed Wilski's reply to you and called NuHope
800-899-5017 just now. They have a really helpful staff there (I spoke with Linda) and a great worksheet on their website http://nu-hope.com/beltlit.pdf that helps you calculate the right belt for you and your body. Once you get the correct measurements, they give you a product number. Then you call your ostomy supplier (I use Liberty) and give them the information. Your physician will have to approve it if you are on Medicare. I just completed the Doctor's Order Form and am putting it in the mail. I don't feel too well today and don't want to drive it over there even though I am so excited to receive my belt. I know it will be night and day with regard to comfort. I am just so uncomfortable most of the time and bending or stooping can be painful. The rest of the time, I walk around with this sense of fullness in my abdomen and pulling of my lower back muscles. No one at the doctor's office or the hospital told me about hernia belts. In fact, my doctor didn't even think I had one as she could not see or feel it. Only the CT scan revealed that I do have one. What really makes me angry is that getting a hernia can sometimes be prevented if you wear a belt after your surgery. NuHope has those, too, for pouch support and hernia prevention. But does anyone tell us? No-o-o. So thanks again, everyone. You given me another piece of valuable information that can make my future brighter. Call NuHope, Bluebell. I think you will be helped and less frightened with this added support, literally and figuratively.

Loretta

Loretta

I live in the Kansas City area and went to the VA for the surgery, and now they (VA) claim I am too fat for surgery (3 Colon and Rectal Surgeons that I saw said my weight was not a problem). The VA does not charge me for my care or meds because of my veteran status. I have not had a reversal, and one is not possible now due to the original surgery which removed the last two feet of my colon, rectum, and anus. I do not see the university medical school about my parastomal hernia until March 2012. No, I am not scared about the mesh because I haven't seen the ads on TV, and I had inguinal hernia repaired with mesh back in 1992 which did not cause problems.

As for the NuHope hernia belt, yes, you should be wearing one. The belt will slow the hernia from getting larger. You should also talk to your PCP about the belt; the PCP may not know enough about colostomies to prescribe a belt. If you are having trouble getting your PCP to prescribe a belt, get your stoma nurse to help you and/or call NuHope and ask them what information they can provide for your PCP. If you have been to NuHope's website, download their catalog and give your PCP a copy. A hernia belt from NuHope costs about $100 if you pay yourself like I did for one at the Ostomy Care Center store here in Kansas City. When I needed to replace my first hernia belt and the VA kept getting the wrong belt, I went there and had them fit me and order a new belt which I got about 7 days later. The VA took another 2 weeks plus after I got the belt from Ostomy Care Center; they know me by name there.

The hernia belts come in a variety of widths and should be worn anytime there is a possibility of a hernia. That means from immediately after surgery or years later or anytime in between.

Conrad

Hi Vietnam,

I'm glad you finally got fitted. Sounds like you went through a lot. I can't wait till mine comes in. I know I will be more comfortable. I got bad news yesterday as my GI is moving back to CA. That leaves one here in Roswell and he is a jerk. I've spoken with a lot of people and they drive as far as 500 miles to see their GI as they will not go to this one. I just heard today that a couple of years ago, he put an old lady in a wheelchair in an examination room at 1:00 p.m. Her driver called at 5:00. The doctor was adamant no one was in the office and he was just locking up. Then he called the driver a few minutes later and said, "Sorry, but she passed away in one of our rooms. No one knew she was there." That was bullshit. The driver told me she put her in the room herself per the R.N's instructions and even asked the woman if she wanted her to stay, but she said no. She died all alone sitting up in a wheelchair in a doctor's office and no one even knew it. See why people drive so far so they won't have to see him? I don't know what I'm going to do. I'm all alone. Most of these folks have family. I pray I don't end up like that little old lady. Those blockages happen fast and can be lethal in hours. Another acquaintance of an acquaintance was deep in the heart of Mexico when his abscess ruptured. He refused to be operated on by the doctors there. He and his wife drove the 7 hours to Laredo, TX. The doctor told her, "It's really bad. He's very infected. But with God's help, we'll do all we can." The man came out fine and wants to drive back to Laredo to get his reversal in May. So I guess I have a lot of research to do. I'm calling, questioning, comparing, considering. I don't want to happen what happened before. My doctor was on vacation for a month and the new gal almost caused my death. Anyway, I'm like a kid at Christmas waiting for my NuHope belt. They were SO nice and patient getting me the right measurements, etc. Boy, I was miserable today. I went to lunch with an old friend and sitting up really straight and stiff and hoping I don't let any air escape makes me so sore. The belt will help my back muscles a lot. Loretta

Hi there Bluebel, well it's already been a week since my surgery and all's holding good. I've been afraid to comment on this in case I'll jinx it, but I'm remaining positive and know it's going to work. My surgeon didn't actually use the mesh for my hernia but decided to use an old stitch system that he's always preferred. My system hasn't as yet settled down to any particular pattern as yet, but I haven't been caught out yet with it, fingers crossed. I did follow my nurses' instructions with the Kegel exercises and know they have definitely helped. My surgery took approximately 7 hours, which the surgeon wasn't surprised with as everything went pretty well to plan. I know I'll have to be careful not to get a recurrence and am taking the lifting thing very seriously.
So my answer to you is not to panic. All will be well and leave it in the hands of your surgeon. I'll let you know how things progress and if there are any other difficulties. So, keep smiling and stay positive, Colm

Hi Blue Bell, that exact thing happened to me. I had my Hartman reversed and the hernia fixed at the same time. Mr. Hale did it at the Sussex. So far, so good.
If it's a massive hernia, you don't need to worry about strangulation. The worst thing is how big it is and how it makes you feel. I recommend you visit the website 'The Apparel Place'. The only thing that flattened my tummy was the extra strong underbust corset. It is $60 but worth the money if you want to go out and wear a nice dress. However, they are really tight and although you will look great, they are not the most comfortable. I am all reversed now and have no hernia, although my tummy sticks out a lot more now that I don't have muscles at the front. So, I wear a light corset and now have a 16-inch mesh sewn in to hold the hernia in place.
Good luck. P.S. I recommend a fiberless diet for a few weeks before the operation and after.

I'm glad you took my advice and are trying the Nu Hope belt. I wear a 6" during the day and 3" at night sleeping. I was really uncomfortable at night sleeping until I started wearing the smaller belt. I wish I knew about it day one, but better late than never. Good luck.

The belt is used post-surgery. No need to wear it beforehand. It will hold in your intestines after the colostomy. Depending on the skill of the surgeon, the small intestines may begin to sneak through the hole created by the stoma. Without support from a belt, gravity helps pull more through little by little (some have it happen all at once.) I read a medical statistic that said
about 50% of all colostomates develop hernias, but it's not clear if they were wearing a belt or not.

It's been a few years, how are you guys doing now? Cheers.