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Support Made the Difference Before Reversal

I was halfway through a 10-hour drive home to Lancaster County PA from Dayton, where I’d just finished a Relay For Life, when I felt the first pains in my lower left side. Thinking they were just cramps, I shrugged them off and kept driving. The cramps persisted though, so I popped a few Naproxen and tried to put my mind on something else.

Eventually I decided to stop at a hotel and sleep it off, then worry about it later. Whatever it was, I couldn’t do anything about it now, I’d call my doctor when I got home. A hospital “just happened” to be next to the hotel I chose, after bypassing 4 others.

When I checked in, though, I was so cramped up that I couldn’t even stand straight. I was sweating, weak, and had a bout of diarrhea. I had always been pretty healthy, so I had no frame of reference for what was going on with me. I figured I had a flu bug or maybe a cyst. I tried eating, taking a shower, more Naproxen, but nothing helped.

Finally at 1:23 am I felt a compulsion to go to the ER. I had no idea what was going on with me but I knew I needed to be checked out. After being checked in, I had a CT scan. The surgeon came back to me himself and announced that I had a ruptured colon and that I was going to have to go into emergency surgery. He could either sew it up or I’d have to have a colostomy.

I had never had issues with my colon and thought colostomies were for “old people”. Alone, still 4 hours from home, I had no clue what I was in for.

I woke up hours later in a drugged daze. The surgeon came in to say that he’d had to do the colostomy. “The hole was so big I could put my thumb through it!” he said in amazement. I looked down at my left side to see this new, strange thing called a colostomy bag attached to me. How was I going to live with this?

At home, I connected with several different sources that I couldn’t have done without. A home health care nurse who showed me how to use and live with the bag, a WOC nurse who educated me, an online support group with fellow ostomates, who were always there for tips or to hear me vent.

I thought my life would be suppressed. But I was still able to swim, jog, bike, go out to eat, travel, and all the others things I did before.

I was fortunate to have a reversal three months later. I recovered quickly with no further health issues. I have a scar, but it reminds me to be thankful for the surgeon, nurses, and support group people who helped me along the way-I could not have done it without them.

Learn more about Jennifer’s story before and after her emergency surgery on her blog.

By Ellyn Mantell morethanmyostomy.com

As an advocate and UOAA Affiliated Support Group Leader, I make it very clear that there is no question or concern that is off-topic for me, and I truly believe that since this is our “new normal” it is very important to be open about all aspects of our lives. The question that seems to most concern new ostomates is about their sexual interactions, and how their partner or future partners will react to their unique anatomy. Since I feel that our anatomy is so beautifully functional (as it may not have been for a long time) I encourage ostomates to look at their ostomy in the most positive of lights. Additionally, it is always my belief that intimacy begins and dwells in the mind, rather than the body.

UOAA President Susan Burns had ileostomy surgery at 36 and knows how important being open about intimacy concerns is. “This is a topic that needs to be discussed but is not addressed enough by health care professionals so it is important to read our guide, find peer-support, or a support group member that is comfortable discussing it,” Susan says.

I believe that intimacy is a beautiful gift one gives to another, and sex is only one meaningful part of the intimate moments people share. I also believe that being intimate with another is a means of communication, a sharing, of thoughts and feelings. This positive reflection of our emotions and adoration for our partner is what bolsters a relationship.

For over two decades, my body was in turmoil, and although I wasn’t faced with a pouch on my abdomen, feeling “sexy” was a transient and very much undependable feeling. Bowel obstructions, bloating, worry all interfered with a positive outlook for intimacy. Couple that with a busy life struggling to be productive in between the medical episodes, and my intestine certainly held me hostage.

My 23rd abdominal surgery, my ileostomy, helped me to begin to have a more predictable life. I am comforted in the knowledge that I function differently, but it is dependable. No longer expecting to be hospitalized on a regular basis, I am free to be productive in so many ways…support groups, motivational speaking, my writing, seeing my family and friends.

The key, however, to the conversations I have with ostomates regarding their own intimacy is to be totally candid with them. Here is what I say…if you are blessed to love and adore your partner, who loves and adores you, then you will travel the road to a joyful connection, enjoying the closeness that you share because you are able to do so. You have the ability to dance together and move together as never before, all the while knowing that your bond is even stronger than you ever thought possible. You are amongst those of us who know that intimacy, that beautiful gift we give each other begins in the mind, and the body just follows along.

Editor’s note. For a complete intimacy and sexuality guide that addresses both physical and emotional issues click here. UOAA’s National Conference in August will also have an expert session on sexuality and frank conversations on the topic for ostomates and a separate meeting space for partners.