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Sex, Lives, and Ileostomates

June 5, 2010 By Laura Novak 13 Comments

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?

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.. I would
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.

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.

Like Dagmar Serota and 15 others like this.

Filed Under: Health Tagged With: colitis, ileotomates, Laura Novak, Robert Dicks Jr.

About Laura Novak

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.

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Comments

1. suzanne rosenwasser says:

June 5, 2010 at 10:04 am

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

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2. Brian Kolstad says:

June 5, 2010 at 5:04 pm

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

3. Rick Levine, MD says:

June 5, 2010 at 7:33 pm

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!

4. Dagmar Serota says:

June 6, 2010 at 12:35 am

Great, inspiring interview. Thank you.

5. Barbara Alfaro says:

June 6, 2010 at 12:47 am

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.

6. Anne Nunno,Ph.D. says:

June 6, 2010 at 4:28 pm

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

7. linda harris says:

June 7, 2010 at 6:03 pm

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. Ransom Stephens says:

June 7, 2010 at 9:51 pm

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. Frances Herb, MD says:

June 8, 2010 at 1:39 am

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
a 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!

10. Richard Humphries says:

June 8, 2010 at 3:51 pm

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. BobbyD says:

July 15, 2010 at 5:13 pm

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

12. Robert Dicks says:

July 19, 2010 at 6:40 pm

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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