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Sex, Lives and Ileostomates

Sex, Lives and Ileostomates

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Published by LauraNovak
Life with an ileostomy 20 years later, a tale of honesty, bravery and manhood.
Life with an ileostomy 20 years later, a tale of honesty, bravery and manhood.

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Published by: LauraNovak on Aug 04, 2010
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8/4/10 10:24 AMThe Good Men Project Magazine: Laura Novak on Manhood and Medicine — The Good Men Project MagazinePage 2 of 11http://goodmenproject.com/2010/06/05/sex-lives-and-ileostomates/
HealthDadsYou are here:Home/Health/ Sex, Lives, and Ileostomates
Sex, Lives, and Ileostomates
June 5, 2010 ByLaura Novak 13 Comments
What’s it like living with an ileostomy? Laura Novak met with Robert  Dicks Jr. to find out.
 
8/4/10 10:24 AMThe Good Men Project Magazine: Laura Novak on Manhood and Medicine — The Good Men Project MagazinePage 3 of 11http://goodmenproject.com/2010/06/05/sex-lives-and-ileostomates/
When Robert Dicks Jr. was 15, he was diagnosed with ulcerative colitis, a chronic inflammatory disease of the intestine. (A yearlater, his father died at 44 from complications of the same disease.) By the time Robert was 38, he’d endured several gruelingintestinal surgeries, including removal of his colon that resulted in an ileostomy. This is where the tip of the small intestine pokesthrough the abdomen wall and fecal waste is eliminated into a small pouch attached to the skin but undetectable under clothing. Whatis it like living with an ileostomy for nearly two decades? I met Robert recently over lunch to find out.
LN
: You were a teenager suffering from the same illness that slowly took your father’s life. What was thatlike?
RD
: It was rough on my whole family, but it was really rough on my mom because she had both a husbandand a son with this really devastating disease with no cure. All you could do was control it. They neverfound the right medication for my dad. Whether they ever discussed surgery with him is not known. Wewere certainly less enlightened in the late 60’s when it came to discussing personal issues like this. But theendless bathroom trips, weight loss, anemia, lack of nutrition, and all the other issues that result from havingthis very serious disease, it all just ganged up on him and he developed hepatitis and died.
LN
: And the same symptoms were ganging up on you at a time when your hormones were kicking in andyou were discovering girls.
RD
: Well, I’d already discovered girls, but I was too bashful to do anything with them! It certainly givesyou a great insecurity about being in social situations when you have emergency bathroom trips. Luckily, bythe time I was a senior in high school, the medications they kept trying actually started working and I wasback playing sports. By the time I entered college, it was pretty much under control.
LN
: For a couple of decades, then, you had a normal sex life?
RD
: In the 70’s and 80’s, you would never know that I had an issue other than the fact that I had to get mycolon checked annually and have regular doctors appointments for anemia and other issues related to UC.But in 1990, as a straight, single San Franciscan and transplanted southerner, it started falling apart.. I wouldhave flare ups where for two or three days I would have an extraordinary number of bathroom trips, but Iwould get it back under control by amping up my medications. I tried everything from alternative totraditional medicine. One night in the spring of ’91 I ended up in the ER, one of many times. The surgeonsaid I had one of the most diseased colons he had ever seen in his life. And he started discussing options. Iwas only 38.
LN
: What were your choices?
RD
: Knowing full well that ulcerative colitis can develop into colon cancer, and those two words can scarethe crap out of anyone, I told the surgeon, you’re not going to give me the surgery because I’m not goingaround wearing one of those bags. Then I started thinking I would not have the threat of colon cancerhanging over me anymore if I did. And he told me of a newer colon removal surgery that would enable meto have normal plumbing, albeit internally somewhat different, called a “J pouch” that would preserve
 
8/4/10 10:24 AMThe Good Men Project Magazine: Laura Novak on Manhood and Medicine — The Good Men Project MagazinePage 4 of 11http://goodmenproject.com/2010/06/05/sex-lives-and-ileostomates/
continence. And that surgery, which I was actually quite excited to get, almost killed me. I developed severeinflammation called “pouchitis” and anemia. I lost twenty-five pounds, was dehydrated, and had up tothirty-five bloody stools a day. I tried to go back to work but had to take medical leave yet again because Iwas too sick to make it through the day. When it doesn’t work, the only solution is to go with somethingmore traditional and that’s how I ended up with the ileostomy.
LN
: How did you feel about intimacy at that point in your life?
RD
: Initially, learning that I was going to have this extraordinary change to my abdomen made me feel forweeks—if not months—that my romantic life was over. I figured I’m just going to have to be reclusive or just not have a romantic life. I started meeting people who were part of the club I didn’t want to be a partof. They started coming out of the woodwork to say, hey, it’s not the end of life. They had lived with it andhad children and had careers and had moved around the country.
LN
: You were hearing from men who were husbands and fathers what you could never hear from your ownfather.RD: A guy came up to me at a support group meeting. He was an airline pilot and had an ileostomy in 1948.He’s telling me about all the kids he’s raised. Hearing these long stories that people had about living entirelives with these things, that let me know that there was hope. During my fourth hospital stay in 1991, I metsome members of the local chapter of the United Ostomy Association. The members were veryaccomplished and accustomed to life with an ileostomy, and they taught me a lot about moving forward. Iwent off and on to support groups for six to seven years.
LN
: How did you go back to living a normal life with the ileostomy? This was new territory, and verypersonal territory. I mean we’re not talking about elbows or knees!
RD
: One day I said, I’ve got to go to Safeway and get some stuff. And that means I have to go out in publicwith this. I thought there would be some scarlet letter or light shining on me when I’m in the Safeway aisletrying to squeeze the Charmin and someone is going to notice that I have this thing, even though it was allcovered up. I’ll never forget that I went to Safeway and got some groceries and walked home and thought,well, nothing bad happened. I guess I really am a member of the club because I’m out moving amongregular people again. I started dating about six-eight months after the surgery.
LN
: How did you learn to tell women about your condition? Because it’s not obvious by looking at you.
RD
: The rest of the plumbing was working just fine. It was a matter of when you bring it up. There is nobook for this. It might have been easier to be missing a leg or something because people would know upfront what they’re getting involved with. Sometimes I got it out of the way right away. But I had to becareful because it’s definitely a conversation stopper. Some women were very curious and inquisitive andother women went away. They didn’t want to deal with it. And I wasn’t mad about that. Because I knewthat everyone had baggage, but it was different baggage than most.
LN
: Did anyone in the support groups
 
share with you their methods for dealing with the ileostomy duringintimacy?
RD
: The turning point for me was this wonderful woman who was the patron saint of ileostomates. She wasthe head of the local organization and came to see me a lot in the hospital and I became quite close to her.When I said I was really worried about romance, she told me that some people buy these belts that are made

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Joe Hagen added this note
Great interview for both of you. He is very comfortable with his life and expresses himself well and you presented it respectfully and clearly. Good job!
Claire Hennessy added this note
Great interview Laura. What a difficult topic but so inspiring. Wow, what some people have to go through!
Luddite added this note
A remarkable story about learning how to live fully despite dealing with a serious medical condition. It's a story of courage. And a story of how humans help one another through some of the most difficult situations -- how reaching out with caring and useful information can turn a nightmare into a hope-filled experience. Thank you for this great story...and congratulations on the feature.
AJewett added this note
BIG THUMBS UP to Robert and to you for covering this. Wonderful brave interview. I have a brother who was diagnosed at a young age with Crohn's Disease... similar to ulcerative colitis with devastating health ramifications and no cure. He's been my hero.. and my inspiration, living each day to the fullest.
LauraNovak added this note
Thank you for reading! It was a great pleasure getting to know Robert and enjoying his humor, wisdom and honesty!
Paul Richardson added this note
Good job!
LauraNovak added this note
Thank you, Scribd, for featuring this important article again. And hats off to Robert Dicks for his grace, humor and honesty. It was a pleasure to work with him on this story!
Barbara Alfaro added this note
Congratulations on being featured!

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