Facing a Difficult Reversal Surgery: Seeking Advice and Support

Hi....I have found out my reversal is going to be very difficult due to scar tissue from prior surgery and the sepsis & E. Coli infection I had left me with some bad scarring too.
I guess I will have a vertical incision from sternum to pubic bone...not a bikini line incision like I had before.
I guess my question is, I am so scared about all this...terrified actually.
What's going to happen, what do I expect?
I am trying to get the info now so I can be prepared for this spring when the surgery is supposed to take place.
Has anyone a colsotomy reversal?
Thanks, Hannah
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Hi Hannah, know how you are feeling - I've had all this surgery but actually other than my stoma which was done laparoscopically, and 2 caesarians which were done on the bikini line, I have no scars - this next one is terrifying me (NOT that I would wear a bikini, ever, anyway!) but it will require large abdominal incisions which is different to my usual surgeries, and with my wonderful record of wound healing it is really giving me nightmares .....
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hi Rachel,
                not that I am happy by any means that you are worried as well, I AM glad someone knows how I feel.  
I guess we are in the same boat. I have been told by th edoc and other people that th ereversal is worse than getting the ostomy.
I hope we don't fall into that catagory rachel!!
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xoxoxoxo....hugs

This is my first time here and I am hoping that I put this in the right place. My colostomy was done emergency at o dark thirty in the morning as I had perforated bowel due to diverticulitis. My scar is from my sternum to my pelvic bone. It was very drastic and on top of the colostomy hard to accept. I am/was a large woman when it happened three months ago and the scar is really much smaller than i first expected. My surgeon says that when he does the reversal (hopefully around May) he said the he would revise the incision and make it as smaller and much less prominent. In the meantime I am using mederma and it seems to help the scarring a little bit. It does help keep it from itching as much while it heals.

Hi and welcome and thanks for taking the trouble to post. Unfortunately it is unlikely that I will be getting a reversal - well certainly not this time arouind anyhow, but my stoma is due to be relocated to the other side and my hernia and fistula are to be repaired as well (all subject to change as I have a new surgeon .....) Nice to hear that your surgeon is concerned about your scarring and is prepared to improve things for you. I haven't heard of Mederma, but will google it as it is probably called something else in the UK! Take care, Rachel x

Tips on Hernia Prevention with Collin | Hollister

I too am waiting for my Spring 2010 colostomy reversal surgery. I too have a gut full of scar tissue. My surgeon doesn't think it will be too much of a problem but did say the scar tissue ruled out a laparoscopic reversal (which I was kinda hoping for). Oh well. I'm scheduled for reversal in April 2010 which is 10 months after initial colostomy surgery. Worst case is I wake up with a temporary ileo but she (my surgeon) tells me that it is an easy takedown when the time comes. She won't know whether I'm going to need an ileo until she's doing the actual surgery.
Marie

I,m looking at my 5th bowel op with the central incision. After 4 ops my scar is fairly braod and unsightly but in reality my bag detracts from the scarring. Try not to get too wound up about the scarring Hannah, I know it's worrying you sick and you really can't afford to do that with the other health issues you have. I do have a couple of tips to help the incision heal neatlywith out leaving a scar thats too unsightly.
1, buy the capsules of pure vitamin E and snip the end off and rub that into the scar to promote healing.

2, pure lavender oil will help the skin repair and reduce the scarring to hopefully a minimum level.

I really can't say much more, I just can't find the words this morning but I can say I keep you in my thoughts every day hoping your well and staying strong. with heaps of love and affection

Steve,, no inapproprite touches today cos I,m feelin fragile.
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Hannah, I want to first say that I am not a doctor, nor do I profess to be, but over the last year and a half of being on this site, I have noticed a few things.

Doctors, for the most part, will continue to do surgery and offer up reversal hope no matter how many surgeries it takes. Not taking into consideration that each and every time they touch our intestines, they are creating scar tissue, which will only complicate chances of our intestinal tracts working better than they did before all the surgeons touched.

If the surgeons cannot guarantee that our bottoms will work perfectly, I am of the group that says leave me to my ostomy. It works perfectly, and I never have an issue with it. I am clean always, never an accident, and no smells, and it allows me to live with a confidence I don't think I have ever known.

As a permanent ostomate today who fought surgery for 24 years and would have initially preferred my death to getting the ostomy, I have come to know how truly wonderful it can be and is.

As a male, know too that I find myself soooooooo attracted to women who are ostomates, because not only are we now the same (sort of visually), it tells me of a journey that has made them unique and very similar to me. I find it very sexy and attractive, yes. Nothing to be ashamed or embarrassed about.

I am waiting for the day that the doctors understand that to go #2 out the bottom isn't the goal. To have bad bowel movements affects your emotions more than people know or will admit to. Just like having a good bowel movement can make you feel great and make you smile. To have a great bowel movement of #2 is the goal and for us sufferers of our diseases, I hate to say this, but that train left my station many years ago. I am now grateful that I can live a life free of illness, and pill-taking, and worry. Period. Oh, I forgot to mention I don't see doctors every week like I used to. Way cool. I think it's been three years since I've seen my GI guy. I do get my stoma checked when I go to the conferences for ostomates, though, which is about once a year.
I hope I have helped here. I do tend to blabber on, but whatever decision you make, I wish you well in your journey. Michael

PS... No sword talk here... LMAO

Hi,  
     I have had 4 incisions of the type you describe.  My husband and I joke that they should have just put in a zipper.  In fact, since my first in 2001 I have seen the technology change from stapling me closed to the last where they use surgical glue which is pretty much the same as super glue.  Plus thread of course which dissolves.  They use the same incision line every time so the scar is the same...scar tissue being stronger and more resilient then uncut skin.  It isn't a bad scar at all.  I also support either Vitamin E or what I used, Cocoa Butter, (much cheaper) to rub into the scar tissue when healed to minimize the redness.  The only weird part of the scar was for a time I lost my navel.  My youngest saw me in the tub and said "You don't have a belly button."  But, in time, that too opened back up.  Not the belly button I had but still an opening.

     I had a reversal of a temporary iliostomy done after three months.  I don't understand why your doctor said it would be difficult.  My surgeon said reversals were a piece of cake, it was making them that was tricky.  They just stick the piece of intestine back in and reattach it and sew it closed.  The most pain I ever had was the night after my reversal I called the nurse for pain.  She gave me a hypo in the butt and hit the muscle.  I lay there in agony all night NOT from the surgery but from the injection in the wrong spot.  Of course everything has to work again before they will discharge you but it didn't take more then a few days.

     I wish you all the luck in the world and know you can face it.  However, I too feel the way beyondpar does...that my life is so much better since my colostomy.  I also fought it like death itself and suffered for way too long.  

     Hang in!

thanks for ther replies y'all.
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I wasn't sick prior to this colostomy.
I went in for a regular hysterectomy and the doctor cut a large hole in  my colon then let me lie there for 4 days and almost die.
I was very healthy before he did this to me, so I do want to have the reversal done.
That being said, it's going to be so difficult DUE to the raging E. Coli infection and the sepsis left a ton of scar tissue and I had a large amount in there from a prior surgery. I portion of my colon became necrotic as did my appendix.
I hope it can be done with no complications, I am very scared just because of the trauma I experienced. It was horrible.

TXGirl

All I can say is this.  I had 6 intestinal surgery's.  All were up the middle from groian(sp) to sternum bone.  I have little to no scar.  It is simply amazing.  I kept asking the surgens, just how many times can you cut thru the same scar and have it re-heal.  With me they used sutures in the muscle, but they used some type of super glue on the skin.  No rail road track!
On the last two times I healed I had a couple of like skin tags just kind of sticking out from the very thin scar line. I finally said the heck with it and took some cuticle scissors and just snipped them off. I then put Aquacel, its made by ConvaTec, on the area.  Aquacel is an extremely good anti bacterial pad.  I think it is Silver Nitrate, but don't quote me on that.

By the way, the up the center 6 times, no problem.  The scar next to my naval where the stoma was, one time only, it is very noticeable!  Only about 3 inches at most long.  Wide and it still is sore.  It has been over a year.


I had terrible parrotinitis after the first surgery.  The surgen was out of town.  So they let me lay in the hospital and pumped full of main meds.  I had unreal cramping  in my gut. A few days later he showed up and went ballistic.  30 minutes after seeing me I was in the OR.

Anyway after 6 surgerys, the last 5 to fix the first one.  A lot of scare tissue inside.  I made it OK for what little I had left, which was no colon.

What I found is this, get a surgen thats takes on the hard cases.  The surgen that does almost the impossible.  Also get your body in as strong a condition as you can.  Walk, lift weights it really counts.

Thru the surgerys I had two of the surgens say they have never seen anyone recover as well as I did.  It was not because I am special or lucky or anything like that.  I worked at it and worked at it hard.  With my middle getting re-opened evey 2 months. I couldn't do anything with that part of my body.  But I could walk and I could lift some weights.

I also did not let myself get heavy.  It's all about how bad you want it.

After that year 2008, my last surgery was Dec. 10.  It took me 3 months to do 1 push up.
I would just keep trying, it would hurt.  I would wait maybe two days and very carefully try again.  Then one day I did one push up, that was about 9 months ago, almost to the day.
Now on a good night I can knock out over 100 in a row.  I turn 64 in a week!  It's not hard to do.  You only have to devote less than 5 minutes a day. Just keep at it.  Remember  exercise is cummulative.  It adds up, a little is better than none.

Good luck, I am sure you will do just fine.    pardon the spelling

Rick.....

By the way, I agree in total with Beyond-Par.

Rick.....

thanks Rick! That's some awesome advice!!
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I had an ostomy reversal in sept '08.  I had an iliostomy on my right & a mucas fistula on my left.  The recovery was extremely painful and never did work quite right.  In May of '09 my bowels ruptured for the 2nd time and I am back to the iliostomy & mucas fistula.
They cut me down the middle.  I no longer have a belly button.  Guess it got lost along the way?
NOT trying to scare you.  Just telling you how it was for me. I've heard of many successful reversals.
Best of luck to you!

Thank janice.  
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Do they usually use staples or sutures for a vertical incision? Just curious. I would figure staples....
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Hi Hannah,
I think my situation is very similar to yours - perforated bowel during hystorectomy, sepsis (ICU for a week), collapsed lung etc ... almost died.  I ended up with an ileostomy and an 18 inch vertical scar from sternum to public line (and a new Dr) in Sept 09 and am hoping for a reversal in the coming months.
After my latest CT scan, Dr told me I had a number of adhesions that may make the reversal a bit more difficult but he won't know for sure until he gets in to take a look.
I am worried (to say the least - scared really) about the surgery and what the results may be.  I have heard good and bad from people and am just praying for a good outcome.  

I'd love to hear more good stories from anyone...please??
Hang in there mate!
Lorraine

hey lorrianne! we sound like twins, except i didnt have a collasped lung!
arent you and I facebook friends???? lmao I just thought about that......
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I lived with Ulcerative Colitis for 17 yrs and I dont feel it was all that bad.  I have my ileostomy due to colon cancer. It's been alittle over 3 1/2 years. My question to Michael and others who believe it has dramatically improved their lives , Are you implying everyone that gets a permanant ostomy will have improved on their life style like you? It sounds that way to me and  I think you should remember peoples situations can be different.
                                                                                                   Kevin

Hi Hannah,
I don't don't have you on facebook.  I'm in Ontario and new to this and am having the same emotional and physical troubles as you (yep, I cry for no reason...or with good reason, depending how you look at it).  Would love a new fb friend but not sure how I can add you from here.
Lorraine

Hi Kevin, I know what you mean but I don't think Michael meant it that way. I re-read his post and I think he was just giving his preference for what HE has been through.

I am with you, I WANT MY REVERSAL!! lol  For me, it has been a horrible thing. My body has been in one state or another of infection since this was done to me in October though so maybe if I felt better physically, my desire to keep this little shit bag would be different....no, I don't think so...I want it gone. lol
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I think we all have different situations and feelings about our ostomy and that is perfectly fine.
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Y'all have a great day!! Hannah

I remember saying to my Stoma Nurse , just before I left hospital, that I could live with PEE but I felt so sorry for people with Colostomies & POO. She told me that in many cases they would heal , Have a reversal & maybe revert back to a nearly normal life. She told me that I however  was stuck with my bag for life as no reversal was possible.......That soon shut me up & made me think...so my best wishes to all you folks who may have a reversal on the Cards....
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Hello, Your medical situation sounds a great deal like mine. I also had an emergency colostomy in the middle of the night due to diaverticulitis. I was really in shock for a month after the surgery which came as a surprise. My incision became infected right after the surgery due to contamination from the ostomy, I had been on a liquid diet for two weeks and so was very weak. It took five months for the long scar to really heal up due to the infection. As I am 76 years old I am weighing the options of having the reversal. My surgeon said that the stitches can come loose. Horrors. If i were ten or more years younger I would get two opinions from respected surgeons and then probably go for the reversal. Good luck to you. CSC

Hey Hannah,
I tried to send you an email through this service but couldn't.
If you have it in your membership drop me a line.
I will be happy to share the technical parts of my surgery.
I'll even send you a pic of my scar.
Mine's from the bottom my sternum ALL THE WAY DOWN to my cha cha cha.
I'll tell you more. Long story.  
I asked ALL of the fellow osties the exact same questions.  Good for you.

Also take a look at my post op thread. Important questions to ask in there.

Here are a few things I don't mind sharing publicly.

Surgical Process: Guess what they did? We don't really think about this but he took my intestines OUT of my body cavity and set it on my chest while they worked underneath first. NASTY!!!

They then set them back inside winding them back in like a garden hose and stitched some of against the wall so it didn't press on the bladder.

They asked me if I wanted to keep my belly button. I said YES! You can't see it unless I pull the folds my incision open.
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Part of what I have to have repaired is that there is a section that is too sharp of a bend and food and meds gets caught in there.

Sutures: Both. They will use stitches inside. Some will dissolve. Others you can feel if you're a skinny rat like me. Then about 50 staples outside. My son and I removed them myself with the kit the doctor gave me.
I'm excited and scared as hell for you!

I had internal dissolveable , super glue & staples----He wasnt taking any chances!

Wow taking your own staples out ....in the USA??.....Gosh that really sounds 3rd world , cost cutting. It certainly wouldnt happen in the UK. That would be termed as part of the surgical procedure over here & removed by a medical professional.

That particular surgeon and I have been through several surgeries together. Once he let me remove some of my own staples at the office. Another time in the hospital. I changed my own IV's bags and injected myself with my B-12.

With the last surgery,  my steri strips fell off after a few days. Then I went to my post op appt and nothing was infected. He asked if I wanted to come back to remove the staples or do it myself.  I said I can do it. So he gave me the kit with sterile staple remover and did it.

I felt pretty bad ass and my 10 year old son thought I was bad ass. I let him remove half of them.  One of my favorite memories of him. BIG OLE smile. Tongue sticking out while he set the appliance under the staple and snapped it off. Hey it didn't hurt. I had no feeling in my incision!

LOL Cost cutting and Third World. Here in the USA,post op appts are bundled in the overall cost of the surgery so he didn't really cut any cost. If anything he lost out on the office visit which he could have charged me for.

I was a little worried about wounds popping, cross infection & a sterile enviroment.

But!! I needent have worried because it looks like you & your  son had everything under control!

I wasnt trying to belittle the US medical service , I guess all countries do things differently.

Imperfect, you are one badass chica!! I couldn't have removed mine, no way, no how!! lol
I had 46 uo and down and the ostomy ones hurt wprse than the vertical staples!
i sent you an email, hope you get it!
take care!

Hey Pilgrim  (kevin)

So glad you said what you said as I might have to be a little more definitive in my words.........Having been to the conferences and met you and yes we had a blast in NOLA and met so many wonderful people  I have come to a conclusion that if you are suffering with your illnes and are a chronic sufferer as I was with UC (  and yes i remember you telling me yours wasnt a prob),  YES  I believe a permanet Ostomy will end the suffering and improve your life.( I speak in regards to UC)..........Thats all......I do know that we each have such a unique journey that there are no Absolutes...............For me its all I say it  is and and as wonderful too.............AS I am not suffering anymore,  never go to a doctor anymore as I feel good all the time,  I never take a pill when i used to take 20 asacol a day, with steroid chasers, My wardrobe I would have to change constantly as well as have change of clothes with me at all times.......So its still a Yes.

With regard to my words on this site.........I read so many stories of pain and suffering and it pains me to read all the words,  so if I can offer up an ounce of hope I will continue to do so.....Even if I am not 100% accurate in my protayal it wil be nice to read while these people are suffering and looking for help in their journey.

My journey was miserable and soooooooooooooo alone that as I had said death seemed to be a very viable solution over Ostomy as my impression of it and all that it represented was all I knew............I know differently today,  hence my posts. So i am on here to give SUPPORT,,,,,,,and more SUPPORT  and more SUPPORT  because I had none or shall I say it ended ten years beofre my surgery

Stay well Kevin as I miss you and all the friends from NOLA..........I hope you make it to RENO as im sure we will all have a blast........
                                                        Michael.........PS.. do you talk to Bax and Ro and the gang?

Hannah - sorry to hear you're so terrified. Good advice here ... and if you really want the surgery and have confidence in your docs, then we'll all pray that it goes well. Try to go into the surgery with as positive a frame of mind as possible.

As far as scarring goes ... it's also so individual. Some people scar from a mosquito bite; others have huge surgeries and the wounds heal well. From what you've already had - what can you realistically expect?

Hugs