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Sex, Lives, and Ileostomates

June 5, 2010 By Laura Novak 13 Comments

8/4/10 10:24 AM

June 5, 2010 By Laura Novak 13 Comments 8/4/10 10:24 AM What’s it like living with

What’s it like living with an ileostomy? Laura Novak met with Robert Dicks Jr. to find out.

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When Robert Dicks Jr. was 15, he was diagnosed with ulcerative colitis, a chronic inflammatory disease of the intestine. (A year later, his father died at 44 from complications of the same disease.) By the time Robert was 38, he’d endured several grueling intestinal surgeries, including removal of his colon that resulted in an ileostomy. This is where the tip of the small intestine pokes through the abdomen wall and fecal waste is eliminated into a small pouch attached to the skin but undetectable under clothing. What is 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 that

like?

that slowly took your father’s life. What was that like? RD : It was rough on

RD: It was rough on my whole family, but it was really rough on my mom because she had both a husband and a son with this really devastating disease with no cure. All you could do was control it. They never found the right medication for my dad. Whether they ever discussed surgery with him is not known. We were certainly less enlightened in the late 60’s when it came to discussing personal issues like this. But the endless bathroom trips, weight loss, anemia, lack of nutrition, and all the other issues that result from having this 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 and you were discovering girls.

RD: Well, I’d already discovered girls, but I was too bashful to do anything with them! It certainly gives you a great insecurity about being in social situations when you have emergency bathroom trips. Luckily, by the time I was a senior in high school, the medications they kept trying actually started working and I was back 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 my colon 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

have flare ups where for two or three days I would have an extraordinary number of bathroom trips, but I would get it back under control by amping up my medications. I tried everything from alternative to traditional medicine. One night in the spring of ’91 I ended up in the ER, one of many times. The surgeon said I had one of the most diseased colons he had ever seen in his life. And he started discussing options. I was only 38.

I would

LN: What were your choices?

RD: Knowing full well that ulcerative colitis can develop into colon cancer, and those two words can scare the crap out of anyone, I told the surgeon, you’re not going to give me the surgery because I’m not going around wearing one of those bags. Then I started thinking I would not have the threat of colon cancer hanging over me anymore if I did. And he told me of a newer colon removal surgery that would enable me to have normal plumbing, albeit internally somewhat different, called a “J pouch” that would preserve

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continence. And that surgery, which I was actually quite excited to get, almost killed me. I developed severe inflammation called “pouchitis” and anemia. I lost twenty-five pounds, was dehydrated, and had up to thirty-five bloody stools a day. I tried to go back to work but had to take medical leave yet again because I was too sick to make it through the day. When it doesn’t work, the only solution is to go with something more 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 for weeks—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 part of. They started coming out of the woodwork to say, hey, it’s not the end of life. They had lived with it and had 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 own father.

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 entire lives with these things, that let me know that there was hope. During my fourth hospital stay in 1991, I met some members of the local chapter of the United Ostomy Association. The members were very accomplished and accustomed to life with an ileostomy, and they taught me a lot about moving forward. I went 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 very personal 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 public with this. I thought there would be some scarlet letter or light shining on me when I’m in the Safeway aisle trying to squeeze the Charmin and someone is going to notice that I have this thing, even though it was all covered 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 among regular 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 no book for this. It might have been easier to be missing a leg or something because people would know up front what they’re getting involved with. Sometimes I got it out of the way right away. But I had to be careful because it’s definitely a conversation stopper. Some women were very curious and inquisitive and other women went away. They didn’t want to deal with it. And I wasn’t mad about that. Because I knew that 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 during intimacy?

RD: The turning point for me was this wonderful woman who was the patron saint of ileostomates. She was the 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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for people with ostomies. It’s like a cummerbund so when you’re having romance you tuck the bag in the cummerbund. I said, really! If I had not had that conversation with her, I wouldn’t have known. It’s not like I was going to see an ad in People magazine.

LN: Someone along the way had to come up with a way to adapt, because the urge to have sex and procreate is greater than having an ileostomy.

RD: I think it proves that I was able to get myself out of my endless funk, start dating again, run in 10K’s, play basketball, work on my golf game, have three more jobs, get married, have twins, and just go back to having the everyday stress that every American has. I also knew at that point that if a woman didn’t have a problem with it, that I was going to be okay from a romantic standpoint.

LN: You’d been living with this for four years when you met your wife? And you told her in the parking lot of a café?

RD: We were hitting it off so well and were falling pretty seriously for each other. I knew I’d have to get it out of the way quickly. Esther just is a completely unselfish individual. I was nervous about it because I didn’t want to lose her but I was certain it needed to get off my chest now, or off my abdomen, because this was starting to get serious. But the key to all of this is the fact that her dad had died from cancer in the late 70’s, and he actually had had a urostomy to catch urine. So it wasn’t completely foreign to her. She was, like, this is a great relationship, I like where it is headed, this doesn’t bother me, and we’ll work around it. And we did work around it. My wife and kids have never known me any other way, so it’s really something we don’t make a big deal about. That may be the best healing of all.

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Dagmar Serota and 15 others like this. Dagmar Serota and 15 others like this.

About Laura Novak Laura Novak is a former television news journalist who has written extensively for the New Laura Novak is a former television news journalist who has written extensively for the New York Times on health, business, and the arts. You can find Novak’s writing on Scribd. Contact her via Twitter.

Novak’s writing on Scribd . Contact her via Twitter . ShareThis Comments 1. suzanne rosenwasser says:

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1.

Scribd . Contact her via Twitter . ShareThis Comments 1. suzanne rosenwasser says: June 5, 2010

suzanne rosenwasser says:

Laura and Robert: Cheers to you both for bringing clarity to such a difficcult issue.

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on Manhood and Medicine — The Good Men Project Magazine 2. Brian Kolstad says: June 5,

2. Brian Kolstad says:

Great interview. Robert’s attitude and courage is inspiring.

interview. Robert’s attitude and courage is inspiring. 3. Rick Levine, MD says: June 5, 2010 at

3. Rick Levine, MD says:

8/4/10 10:24 AM

Fine interview! and a gift to people facing similar challenges. Generally (strong emphasis on “generally”) you won’t get this kind of information and encouragement from even a well-trained and compassionate doctor. Mr. Dicks has the unique standpoint of someone who’s “been there” and thrived. Bravo to interviewer and interviewee!

there” and thrived. Bravo to interviewer and interviewee! 4. Dagmar Serota says: June 6, 2010 at

4. Dagmar Serota says:

Great, inspiring interview. Thank you.

6, 2010 at 12:35 am Great, inspiring interview. Thank you. 5. Barbara Alfaro says: June 6,

5. Barbara Alfaro says:

An excellent interview about a not very well-known condition. It can only be of help to those families dealing with this. Mr. Dicks’ humor and honesty deserve credit as does Laura Novak’s incisive journalistic style.

credit as does Laura Novak’s incisive journalistic style. 6. Anne Nunno,Ph.D. says: June 6, 2010 at

6. Anne Nunno,Ph.D. says:

Wonderful and candid interview–the e,mphasis on intimacy and the challenges was so personal and so informative.Thank you, Laura and Robert.

so personal and so informative.Thank you, Laura and Robert. 7. linda harris says: June 7, 2010

7. linda harris says:

Interesting interview for its lifetime perspective on coping with this chronic condition from puberty to adulthood. Congratulations to Robert and Laura for putting this intimate and honest discussion into the public discourse.

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8.

8. Ransom Stephens says:

Thank you Laura for bringing forward someone who understands what it is to endure. For those of us who live comparatively charmed lives, it is a lesson in courage. Since we hope to contract the courage by reading your work without having to suffer the lessons, we are essentially grateful – that is, grateful throughout our very essence.

9.

9. Frances Herb, MD says:

Frances Herb, MD says:

This beautiful interview is a gift to both medical educators and patients. It is especially valuable for young men facing a similar agonizing choice between death and disfigurement. It was an interview

that modeled one of the most difficult skills to teach doctors in training: how to ask about sexuality in

way that is relaxed and genuine. So often, concerns about one’s sexuality are the most important to the patient. Yet they cannot bring themselves to ask about and neither can the doctor! Bravo to Ms. Novak!

a

10.

10. Richard Humphries says:

This straightforward account of such a huge challenge is remarkable for its candor and display of the human spirit. Great interviewee, interviewer and interview. Thank you!

11.

11. BobbyD says:

BobbyD says:

Thanks for shedding light on a subject we all know to little about.

12.

12. Robert Dicks says:

Robert Dicks says:

I want to thank Laura Novak for such a thoughtful job on this feature with yours truly. Through her

warmth, sensitivity and tremendous reporter instincts, she helped me carefully address the more complex elements of this quite unusual situation. Without Laura’s approach and framing, most of this information would probably be tucked (!) away forever. I really appreciate how she crafted this, and I hope the story offers hope to others in a similar situation.

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