Reversal Decision - Reclaiming Myself Amidst the Battle

For weeks now, my mind has been racing about reversal. Two consultations with the surgeon, a flexible sigmoidoscopy, a barium enema later, I still have one more consultation appointment before I make my decision.

I pulled to the side of a pond and stepped out of my car today to look at an 8.5-acre piece of property with a client. My mind was going over the dimensions of the parcel - the length of the northern and western boundary lines - eyes searching for the spillway in the pond to check its function...etc... For that moment, for that split fraction of time, I was me again. Strong, knowledgeable, quick, and capable of computing a year's worth of comparable sales from memory in my mind.

I took another couple steps onto the dam to feel the dirt beneath my feet - was it solid or did it seem to be holding water? Then it hit me - the burn - the sting - like a hundred fire ants stinging my belly. I placed my hand against the bag instinctively and walked slowly on - the client was following behind me. My mind was now on a different track... the recessed stoma track. Oh my - is it going to leak? Is crap gonna run all down my leg and soak my pants? Maybe the crap is just laying in the abyss of the recessed stoma and burning like fire...please God!!!

When the client reached out to touch my arm from behind as if to steady me, the Realtor was gone. The moment of strength was over. I was just a lady, with a crap sack hanging from her side in a place where she had no business being. Nowhere to check it - nowhere to hide. Vulnerable, exposed. I felt like a foreigner in a land I was born in. Like I couldn't speak my own native tongue.

I know in my head what this has done to me. This thing has blown through my psyche like a wrecking ball. Although he had no idea I was wearing a bag, the touch of a kind hand to steady me without my asking for help confirms he SAW the weakness I feel inside constantly. The touch just brought the feeling to the surface. Oh my - now others SEE that something isn't right.

I have never been seen this way before. It is new. It is foreign. It angers me. I realized in that moment that I need to go through with this reversal. I have to try to get back to ME again. I feel like my mind and my body don't belong in the same space anymore and I must try to reconcile the two or this battle will continue to rage, consuming both my body and mind in its wake.

Most of us, when we got our ostomies, were not expecting it, so it's a big change to our bodies and mind to have to come to terms with - and it's not something that anyone can do overnight. It can take many months or even years. What you gotta be is keep telling yourself that you're thankful that you're still alive - and that you still have your family and they still have you. Having an ostomy bag doesn't change who you are on the inside.

I was originally supposed to be reconnected - but my Barium disclosed complications with my bowel that could not be fixed, so I was left with no alternative but to have a permanent ileostomy. So I had to just come to the realization that "life goes on" and so what that I can't wear my pants down on my hips anymore - I can still do anything and everything that I did before I had surgery. I go swimming, to the beach, to the gym.

I have had several intimate relationships - and through those experiences, I learned it wasn't my partner that had a problem with my bag - it was ME! - and once I realized that they didn't, then it quickly wasn't a problem for me any longer. So just be glad you have the chance to be reconnected again because not everyone does - and if for some reason in the future health issues require you to have one permanently - then you'll be able to deal with it a lot easier - and you'll know it's not the end of the road or life - it's just a little change in attire and eating habits, that's all.

There is much wisdom shared here, Juuust_Jim.

I had to come to terms with my ileostomy before I could move forward with a reversal....in its time and place.....instead of my own wants and desires. Once I made peace with it and the reasons why I had to have the ileostomy in the first place, my body became relieved and relaxed, and I was able to go ahead with the reversal process; 14 months after I had the emergency ileostomy and lost my entire large intestine.

I am making excellent progress since my reversal on 2-1-12, but I also know that if for some reason I have to have another ostomy in the future, I can be okay with it and accept it as a permanent part of my life.

A note to others.....YMMV.

Blessings!
Darla

Thanks for the kind words, Jim and Darla. I am eight months post-emergency ileo. I received it after I had my appendix taken out as a result of a leak that caused peritonitis, sepsis, septic shock, coma, and life support. Yes, I am thankful that it saved my life. This stoma is, however, a problem child - recessed and the stool is slowly eating my skin away. I have tried all manner of bags and have a wonderful WOC nurse - but it just won't cooperate. I am thankful for the opportunity to have it reversed.

The war raging in my mind has had a lot to do with fear. I am scared of what will happen if I have the surgery and get a leak where they join me back together. That horror is paralyzing - but I have to try!

Jim is right - it takes a long time to wrap your brain around this thing - especially when you are not expecting it. I have the utmost respect for all fellow ostomates and urostomates. To have this stoma resited is still another surgery that carries risk - so I have to try for the reconnect instead. I think maybe that is where the anger comes in - nobody wants to have to do anything. Nobody likes to have their choices limited. It is like being told, "Okay, Melissa, you can choose door A with pain - or door B with pain - which would you prefer?". I am trying to see past those doors and into my future.

The only thing making this any better right now is I know who holds the future.

Love y'all.

Melissa -

I understand completely about the fear part. I was so scared to have my reversal for some of those same reasons....in my case, the doc had to sew the small intestine to what is left of my rectum.....and I could picture a thousand different scenarios with not so pleasant outcomes! For me, it was keep the bag or risk incontinence or problems where the small intestine was reconnected to the rectum....I almost backed out several times out of fear. And, I was angry, too.....angry because I felt so "robbed"....my colon perfed in 3 places with virtually no warning and no prior symptoms! But, once I got on this site and started reading about the sufferings of others with Crohn's and UC and Cancer, etc. I became quite humbled and ashamed of my knee-jerk reactions to my own situation! At least I had not had to endure the sufferings that a lot of other people have had to endure....AND I COULD have a shot at a reversal; which many of my fellow ostomates COULD NOT. I gave myself a good swift kick in the ostomy panties and decided to get out and live my life again, with or without the bag!

It was then that I began to be thankful for the chance at a reversal and went for it! And I am SO glad that I did, now that it is over and I am almost 5 months into my recovery! There have been NO complications to date, and I have recovered so much quicker than I ever thought possible! Yes, I must take Lomotil, Metamucil, and Tincture of Opium to slow down the BMs, but I have only had ONE accident since I got home from the hospital....and that was my fault for drinking a margarita on an empty stomach and not taking my meds that morning!

I can certainly understand your compelling desire to try to make a reversal work, too! It is a big decision, don't kid yourself, but if you can come to peace about it then I would urge you to just go for it and trust in the ONE who DOES hold your FUTURE! You will be in my thoughts and prayers. Please keep me posted on your decision process.

Darla

Words of Encouragement from Ostomy Advocates I Hollister

Oh my God, I can't believe it! Our stories are so similar! I had that "ah-ha" moment in April when I was holding my 2-year-old grandson reading him a book. His wiggly little bottom worked the glue off my flange. When I stood up, poop spilled onto the living room carpet like a jackpot slot machine. The smell was horrible and I felt my skin turn red from head to toe in shame. My grandson said, "Gran-nana made poo-poo". My son was humiliated and angry, though he tried to hide it. The following day when we went hiking in the Redwoods, I lifted my grandson over a tiny fence. My son said, "Put him down! If you have a bag failure out here, it'll ruin the whole day."

That's when I knew I had to get me back, too. For the past three years, I've been vacillating from fear, lack of insurance, having to return my mom to a nursing home during the recovery period, but mostly, waking up from the surgery with another bag. So, I have been feverishly researching since then and just today returned from a 7-hour drive for a consultation with a 5-star colorectal surgeon. He won't do it. He said the scar tissue is so bad it is encapsulating my vital organs and he does not feel comfortable enough to go in there without a team of surgeons, a general surgeon, a gynecologist, and a urologist.

I had an idea I was worse off inside than others thought as I look vibrant and healthy on the outside. I'm always in pain, especially back pain, but blamed it on my fibromyalgia. The surgeon said, "Well, of course you're in pain! All your organs are 'locked in' by scar tissue! They should be free-flowing." I also have a large hernia right behind my stoma that the doctors fear could perforate my bowel. I didn't even think that was possible, but it is. Neither did I know a hernia could become abscessed. There are many, many things I have learned since my research began. Some bad - like hernias usually come back requiring a second and even a third surgery. Some good - like we will not have to worry about skin tears when we're old and need a bag change. Now, I know there are lots of new inventions and techniques that do away with "bags", but the thought of sticking anything in my stoma gives me the willies, I'm sorry. So as long as I have a stoma, irrigation and plugs are not an option. Plus, if I'm going to do this, I want the stoma gone! Just a few scars to remind me of the 3 years that were stolen from me due to a rushed doctor's misdiagnosis.

It is very likely that I will have a bag the rest of my life, but like you, I'm going for it. The surgeon said that there is "one" man he could think of that could do this complex surgery. He is in Lubbock and the surgeon worked with him at the teaching school in Houston for many years. I called and they are sending me the initial paperwork to complete. I must also consider that if I don't get this scar tissue cut away from my vital organs, then it will cut off the blood supply to them and I will die sooner than later from tissue necrosis. So these newly discovered problems have given me the impetus to swallow my fear and go under the knife again - if there is a surgeon who will do it. If not, I will make the most of whatever time I have left as "not me" but as a "new me" - brave, somewhat less trusting, who can accept the possibility of an early, lonely death.

Oh thank God, Octobersunrise, that you understand!!! I totally understand the son thing - my daughters are usually on my heels wherever I go, looking at me still like I may evaporate in front of their eyes. I would love to give them a "normal" day with their momma again, but sometimes I am afraid I don't know what that feels like anymore. I, like you, have trust issues as well now that seem to know no limits and have seeped into every facet of my life.

Please tell me if you don't mind how exactly they determined the amount of scar tissue you have. This has been gnawing at me as well for quite some time. I mostly feel "pulling" inside when I twist or reach up and have been told that is what it was, but wondered if there was a test to determine how much???

Just so you know, those world-class surgeons aren't always what they are cracked up to be. My surgeon was the Chief of General Surgery at a very large reputable university hospital in Atlanta... Please make sure you are comfortable with him/her even if they are "world-class".

It sounds as if you have made the only choice possible for your mind and health at this point. That is also frustrating for me as I don't like being told I MUST do this or that. You, along with most others I have encountered on this site, are in my prayers daily now. Heaven help us all!!!

I've had 4 surgeries total, ladies - and when I finally had my rectum, my doctor had planned to do it laparoscopically so as not to have to open up the abdomen a 4th time, being that my stoma was already in place and in perfect working order. But after I woke up, I found that I had been cut open through the abdomen again - and my doctor said that he was unable to do it all from the bottom end like they often do these days if removing it in the initial surgery - because my scar tissue was so dense in the lower abdomen, he had to cut me open up top to effectively cut it free and clean everything up. So he basically said that the more surgeries you've had, the more scar tissue you're likely to have, because every time you cut inside, that's causing new scar tissue to grow.

To: Octobersunrise - The most renowned Ostomy surgery Clinic, from what I've always heard and been told, in North America, is the one in Cleveland, OH. I've had at least 3 friends from various states on the East Coast travel all the way to that clinic for their operations.

I have a urostomy. I had the procedure done at Cleveland Clinic. It is a wonderful place. They will diagnose you and tell you everything. They will find answers no one else can. Great place - highly recommend it. I am lucky to live 2 hours away.

I was born in Cleveland, but only lived there until I was 5 - then my family moved out west.

Well, the irony is to remove scar tissue causes new scar tissue to form. And scar tissue has to be surgically removed, there is no other way. There is really no way to tell how much scar tissue one has until the surgeons get in there, but after reading my operative report and learning that my entire abdomen "looked like a bomb had gone off" tells the new doctors the scar tissue has got to be extensive. Some of it, they can feel. What makes me so mad is there are things one can do to prevent scar tissue from getting so out of hand if they are done early enough - like certain stretching exercises, deep tissue massage, herbal treatments, etc., but no one told me about any of this stuff. My doctor said if I am in that much pain the scar tissue must be very "banded" and with that much trauma to the abdomen and pelvis, it has got to be severe. Sure wish I could go to Cleveland. I think I will just leave things as they are for a while and begin the therapies above that would have prevented so much scar tissue. These things won't remove the scar tissue but they can slow down the growing process and relieve the pain. This is a good article below and then I kept moving on to other links that listed the exercises. I tried them today and couldn't even do 5 minutes. But I'll do another 5 minutes tomorrow and maybe by the end of the week, it'll be 20 and so on.

http://www.risingwomen.com/may%202005%20health%20rowe.htm

I had never heard of any therapeutic efforts or that stretching an exercise would limit the growth of scar tissue - and I'm a serious exercise guru. But one thing I do know is that the key to exercise and fitness is consistency and dedication. Just take it slow and tack on a couple of minutes each time. For what you're looking to do - you just want to stretch and work on building your cardio level - you don't want to push too hard and end up being sore the next day because then you have to take a day off to let your body recoup.

So glad you mentioned this -- some people have surgeries and don't give the skin a second thought until there isn't any left that can hold the stoma -- and then there is all the scar tissue and the adhesions that strangle organs --- extra surgery is to be avoided at all costs - you are playing Russian roulette with your body --

There is a tissue wrap to prevent adhesions -- I had it used - you need to ask for and permit its use -- ask at Dartmouth Hitchcock and there is one in the UK that uses it especially for FAP cases.

I hear you completely -- please ask about the new wrap that keeps all the organs from this horrible adhesion mess- ;I also thankful my surgeon asked if I was willing to test it ---I have nothing but great things to say and I have been through the whole mess ---