Reflection

Getting To Know Dee - An Ostomy Story

By Donita (Dee) Carmichael
March 2005

Hey, my name is Donita (but Dee is so much easier) from Alabama. I'm 38, married to a wonderful and supportive husband Robby and I have 2 children. My daughter is 20 and my son is 9. I guess my story is a little different on how I became a Colostomate. I had one child who was 11 and wanted another child so bad. I would lie in bed at night and pray for God to make a way for me to have a baby, (BUT) only if I could stop working and stay home with the baby. Like that was going to happen! It took both of us working to keep up with the Joneses. After a tubule pregnancy, we started trying to have a baby again. Well let me say be careful what you ask for because you just might get it (in my case I sure got the stay at home part down pat). In October of 1995, at the age of 29 I gave birth to a beautiful baby boy weighing 9lbs 9oz. During the childbirth process I had bones broken, 4th degree tears and my splinter muscle in the rectum was severely damaged and I had extensive nerve damage leaving me completely incontinent. Just in case you're wondering what the sphincter muscle is, it's a ring of muscle that contracts to close an opening.

My OB/GYN told me everything was normal I was just experiencing temporary problems from giving birth to a large baby and to do Kagel exercises. OK, remind me never to get only one opinion! About a year and a half went on with the same problems still going on and I decided I needed to get another opinion since instead of getting better, I was worse. I can still hear my new OB/GYN, Dr. Francois Blaudeau asking, "Sweetie, what in the world has happened to you?" He scheduled surgery for a partial hysterectomy, a vaginal repair, rectal (sphincter) repair and since everything was all falling south anyway, might as well tack that bladder up. It wasn't but a couple of months before the rectal repair broke down. He sent me to the best butt doctor in town (Dr. Brian Guffin) at The Alabama Colon and Rectal Institute in Birmingham, AL. By the way he really is #1 in the #2 business.

After doing a sphincterplasty surgery, just my luck it broke down again within a month or so. I think I was his first patient ever for the surgery to break down so fast. So Dr. Guffin and his partner Dr. Dan Coyle did another surgery together. I kept having problems such as everything from sphincterplasty breakdowns, fistulas, infections, hemorrhaging, you name it. Repair after repair, I kept having problems arising out of these surgeries. It seemed as if anything bad that could happen to me, it did. I was sent to have nerve study test to determine the extent of nerve damage, since I would not even be aware of a bowel movement coming on. It was around some of the earlier surgeries I started having severe back pain and rectal spasms. Then as if nothing else could go wrong, my bladder started hurting really bad and I was diagnosed with Interstitial Cystitis. Foods and Drinks with a lot of acid ate little holes in my bladder which caused me to cramp severely. I have had several surgeries to have the lining of my bladder burnt out so the lining can re-grow and help the pain. After about 8 years of in and out of the hospital, I was really hitting my rock bottom. I went through severe depression and insomnia and I went on disability, I think around 1997, because of the fact I couldn't control any bowel movements nor did I have any nerve sensation. I had accidents all the time with no 5 second clue to hurry up and get to a bathroom along with the back pain and rectal spasm. This can be quite unnerving when you work in a public place (I just happened to work with all men... go figure, with my luck). It was very embarrassing to have no bowel sensation or control and I know that the guys I worked with weren't entirely happy to deal with this day to day. Guess it embarrassed us all!

I couldn't understand why this happened to me. I could heal anywhere except in my toosh area. I just couldn't figure out why God was letting me go through all of this. It wasn't fair at all and I decided I was finished with this stuff. But I forgot one thing! I had prayed for a baby and the ability to stay home with him, and God wasn't finished with me yet. But I was stubborn from the word go. My Colon/Rectal doctor had told me my options of having a colostomy, but I was like, no way. Only old people have them, how disgusting and I wouldn't even consider it (Gee, see what being pigheaded can get you; the colostomy could have saved me a lot of pain). He told me of some new procedures being done where they can take muscles out of your leg and reconstruct them around the sphincter muscle in the rectum. I was like no way, after all this stuff and nothing worked, am I going to let them mess my legs up too and that not work out.

Another option was to have an Artificial Bowel Splinter. By the time I got around to doing this, I thought this procedure has got to work. It took me awhile to make a commitment for this surgery because of money and traveling back and forth from The Cleveland Clinic in Weston, FL. In January of 2004 Dr. Wexner did my surgery at The Cleveland Clinic in Weston, FL for the Artificial Bowel Sphincter. Everything was internal so physically you really couldn't see the problems I was dealing with. The surgery did help tremendously with bowel control. Having said that after around a 5-6 week stay in Florida, I flew home and my stitches from the surgery (can you guess it was in the rectal area...you don't think I would escape from healing there do you) all ripped out during the airplane ride home. This was just more than I thought I could bear. I couldn't have gotten through all of this without the loving support from my parents Steve and Dot who live in Jacksonville, Fl and from my husband and family.

I continued to go to The Cleveland Clinic every month for check-ups and the opening that had come loose during my flight never healed up, creating a fistula that bowel would also come through and I kept an infection and lived on antibiotics for 9 months. In June of 2004, Dr. Wexner did surgery to try and repair the opening fistula area from the implant. Everything healed up this time nicely except for one little tiny pinhole, which kept staying infected. In Sept 2004 I was hospitalized here in Alabama for 6 days due to the infection starting to spread to my organs and then transferred back to The Cleveland Clinic in Florida, where my husband and I made the decision to have the Artificial Bowel Sphincter removed and with the option to go back later and have it redone. NO THANKS! Enough is enough. Back to square one. Robby (husband's photo on right) and I finally started discussing the no-no word "Colostomy." In order to repair the fistula that was left again from taking the implant out, I would need to have a Colostomy and heal before they could start trying to repair this problem. So yes I have more surgeries ahead of me, but I'm a tuff one and I won't let this get the best of me. My husband has been so loving and supportive throughout this whole ordeal that I just couldn't even think of burdening him with living with an Ostomate with all he had been through the past 9 years. Basically it had been left up to him in keeping the household going for the past 9 years. Okay, it really was my hang up about being labeled an Ostomate, not his. I couldn't imagine that he could love and look at me in the same way. This new Colostomy was going to require me to have a Stoma which is an opening made from my colon to divert my stool. Bless his heart he has stood by me 100%.

Okay, in order to repair other problems, I had to have the Colostomy and I finally bit the bullet and said, "Let's do it," and I had my surgery on January 21, 2005 and at first I was just shocked. I couldn't believe I had done this. Of course, I was a little sore but it was nothing compared to other surgeries that I had been through. I started educating myself more and more, learning that my Colostomy doesn't have to rule my world; in fact, it gives me so much more freedom. Not all of my problems are cured, I still suffer from back and bladder pain, but my rectal spasms have diminished greatly.

All leading back to about 39 different surgeries, I have to say what in the heck was I so afraid of? Being able to go to the grocery store without worrying that I would embarrass myself and everyone else with uncontrollable bowel leakage and diarrhea. Being able to go on field trips with my son without embarrassing him. Seems kind of silly now looking back on it. I sure wish I had done this sooner; it wasn't the end of my world, but is opening up to be a whole new start on one. I am even finding ways to get past my issues with my vain self. You see, God found a way to grant my prayer, so that I could have a baby and stay home with him. This just wasn't the way I wanted it to work out. You see, I could have told God a whole different scenario on how we could have done things differently. But there were bigger plans in the making that I could never have dreamed of 9 years ago. The main thing I believe is that this has happened for a reason! What could that reason be? Ummm, I've been asking myself that for 9 years. Now I have the answer! To bring advocacy awareness that being an Ostomate is not the end of the world and it can be a whole new beginning. I am still the same person I was before the surgery, it's just my anatomy has changed a little bit.

Insurance issues, which is a whole other story in itself, have shown me there are still laws that need to be passed and we as Ostomates need to let people know that it's not a "bad or old person thing" it is simply a way of life for some people. We should not be denied supplies for Ostomy prosthesis, which is exactly what an Ostomy surgery does. It replaces a body function. There are still insurance companies (namely mine, which is "United Healthcare"), that I feel have created loop holes in their plans by calling everything "disposable" under durable medical equipment so they do not have to pay for Ostomy supplies, or for a better phrase, supplies for an Ostomy prosthesis just as one would replace a limb or eye. I've learned over the years I can complain all I want to about how badly I feel or how wrongly I have been treated (which won't make a difference to anybody but my health) or I can get off my tail end and make a difference. To let my Colostomy be as positive as it can be. It's like an email I received that described me to the tee... It said:

When life's problems seem overwhelming, it helps to look around and see what other people are coping with. You just might find that you are far more fortunate than you imagined.

Your Cross
Whatever your cross
Whatever your pain
There will always be sunshine
After the rain
Perhaps you may stumble
Perhaps even fall
But God's always there
To help you through it all.
^{(Author Unknown)}

If you are at a point in your life where you maybe facing an Ostomy surgery, my advice is to get informed as much as possible on your surgery. Don't be afraid to ask questions, even if it's the taboo ones that we don't like to talk about like sex, or how will this affect my emotional state. Get yourself prepared. This is your life and only you can bring happiness to it during some of the difficult situations which may lay ahead for you. Get yourself as organized as you can and just relax, you might even find yourself happier than you ever dreamed you could be. Deal with problems as they arise and let tomorrow take care of itself. Keep up a positive attitude. Your life can still be great and even better! Your new stoma might be your best friend for life, by saving your life. Don't hate your stoma, take care of it and work towards your recovery. Hating it will not make it go away... Deal with it and get on in your new journey in life.

I truly look forward to being able to spend more quality of life with my son (photo on right) instead of having him held up inside our house like we both were both hostages to my bowel function. Life is great... just take those baby steps a little at a time and hopefully you will find yourself, like me not being intimidated with the stigma of a Colostomy/or any Ostomy. It does not define who you are, but the way you deal with it will define you. I choose to deal with my Colostomy so that not only I benefit, but also that I might help some other people benefit from it by trying to keep my chin UP and help raise awareness for all of us Ostomates.

Donita (Dee) Carmichael

outrajusridr (at) yahoo.com

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Dee is a regular in the StuartOnline weekly chat-room http://www.stuartonline.com/id10.html.
She is always there helping any of those who may have a question or two.

This story originally ran in the StuartOnline Weekly Newsletter March 28, 2005 issue.