Digestive Wellness (DW): Tell us a little bit about yourself, your wife, and your kids.
Russ Girolamo (RG): I am a lifelong resident of Westchester County. I grew up in Yorktown Heights and currently live in Somers. My passions growing up were sports, comedy, old TV shows and movies. In high school, I was in school plays and played many sports including football, basketball, and lacrosse. I am still very active in youth sports in our town, coaching multiple teams. I have been married for 18 years to my wife Allison, and we have 2 sometimes great kids (ha!), Russell who is 8 and Olivia who is 4. I work in the insurance industry as an agent/broker for the Girolamo Agency. I am very active in the Crohn's & Colitis Foundation of America. I am the Past Chairman and currently sit on the local board of directors.
DW: How did you and your wife meet? How old were you when you met?
RG: My wife and I were sort of set up. See if you can follow this, though it may require a schematic and flow chart! Allison's brother-in-law (her sister's husband) and my brother-in-law (my sister's husband) were and are still best friends. So 1 night over 20 years ago, (July 1, 1994 to be exact), they were all going to a Yankees game (my sister and her husband and Allison's sister and her husband). The couples decided to invite Allison and me. Well, as it goes, the Yankees lost 4-3 against the Mariners, but more importantly, I met Allison that night and knew immediately that Allison was special. I was very interested in getting to know her better. I was 25 at the time, and Allison was 22. Just a couple of young pups! We began dating, and I haven't looked back since.
DW: Wow! Sounds very romantic. So happy you found such a lovely partner! While you were dating, when did you know it was the right time to tell her you had IBD?
RG: That is a great question. So I was diagnosed with Ulcerative Colitis (UC) when I was 12 years old. The disease created a lot of issues for me - the flares were very difficult to deal with as a child and adolescent. It is very challenging to deal with the difficulties of living with the disease, especially during my high school years. I only tell you about this because quite frankly, it made it very hard to date when I was a teenager.
Because of my UC, my growth was stunted, and I definitely had body image issues. I was not exactly the stud girls were tripping over to date. I had a few dates, but no long-term girlfriends. The UC and its unpredictability created a real lack of confidence in who I was, especially around females.
As time passed and I grew (literally and figuratively), I became more comfortable with my disease and who I was ... so to get back to your question - I told Allison pretty quickly after we began dating. Probably within 2 weeks of dating.
On one of our first dates, my belly was killing me and making terrible noises - growling fit only for grizzly bears and roosters at dawn. Plus I think I went to the bathroom 5 times during our date. The next day I called her and told her about my disease. She was sad for me and showed great empathy for the pain I had endured and was experiencing. She was understanding and also very interested in learning more about UC ... it was at that point that I realized just how special she was. She was willing to be a part of my life, and while the disease does not define who I am, it is a part of me, and she "got" that ... to this day, Allison has been my biggest supporter and has been with me every step of the way. Through colonoscopies, through flares, through hospital visits, and through surgeries.
DW: It sounds like you were comfortable very early on telling Allison. Do you have any advice for our readers on when they should share and how you determined to share so early?
RG: I really think that it is an individual decision. Some people living with UC or Crohn's just aren't comfortable talking about their disease for fear the person they are dating will leave. Here comes my advice influenced by my Italian mother - if the person you are dating cannot handle your disease well, they just aren't worth having in your life. I have found life is a lot easier when I am able to share my story with my friends or girlfriend (in this case the woman who eventually became my wife).
As you can guess, my advice is to tell sooner rather than later. Probably not on your first date, but if you get the sense the person you are seeing is someone you would really want in your life - give them full disclosure in the first month.
DW: If you had one piece of advice for a couple on how to navigate IBD together, what would it be?
RG: Learn about the disease together. Anyone who has a spouse living with IBD knows this disease is far from predictable. Flares come without warning, and severe flares can be extremely painful and can last for long periods of time. My wife Allison has been extremely supportive of me through my 34 year battle with UC. The one piece of advice I would suggest is that you battle it together. Your partner needs to be not only your wife/husband/significant other, but also your biggest advocate. Education - learning about the disease, the treatments, the alternative therapies and surgeries - these are all things you can do together. My wife does not have IBD, but I can tell you she probably knows more about the disease than a lot of patients, simply because she has been with me side by side battling since our dating days.
DG: Give me an example of when having UC affected your work.
RG: Having UC can become problematic in the workplace. During a flare I can remember missing weeks of work at a time. Or having to use the bathroom 30 times during the course of a work day was never fun either. I have always tried to explain and educate coworkers about UC, how it affects me systematically, and that my bathroom frequency was not me avoiding work - but it was a necessary trip. (Of course, if they used the restroom after me, they would know my trip was definitely for business and not pleasure!).
DW: IBD is often called the "silent sufferers' disease" because people are embarrassed to talk about the symptoms. How do you think we as a society can deal with this so that people are getting diagnosed earlier in the course of the disease, as well as feeling more comfortable talking about it?
RG: I can tell you that since my diagnosis in 1981, education and awareness for the disease have grown. People are beginning to become more comfortable about sharing their stories. I give a lot of credit to brave patients and the Crohn's & Colitis Foundation of America. CCFA invests a substantial amount of time and money into not only funding a cure but also into patient advocacy and education. CCFA has done an amazing job spreading the word about the 1.6 million Americans who live every day with IBDs. Through educational symposia, support programs, TV campaigns and fundraising events like Take Steps Walks, where hundreds of thousands of IBD patients and their families gather each year to walk for a cure and in doing so build strength through a common bond and numbers. When you know you aren't alone, it is much easier to share your story, which in turn builds more awareness for the diseases.
DW: Do you have any advice for how people can handle the stigma around IBD?
RG: My advice is easier said than done. But I would say the best way to lose the stigma is to educate people on what the disease is - that it is a genetic illness that you were born with ... not a disease you "get" from eating spicy Mexican food. Let everyone know that people with IBD are not limited by the disease and that they can do anything a non-IBD person can do. I also like to reference some famous people who had/have IBD. JFK is always a good one.
DW: How did you find out you had UC?
RG: From first symptom to diagnosis, it took over a year and a half. My symptoms progressively got worse - until I was admitted to the hospital on April 1, 1981, and it was determined I had UC.
DW: What were your symptoms?
RG: Gut pain, blood in stool, diarrhea, extreme fatigue and weight loss, joint pain.
DW: When was your last flare? What happened during your flare?
RG: My last official flare was May of 2013. The flare started like any other flare I had experienced over my 30 years of living with UC but this flare ended up being very different ... No matter what treatment or change in treatment my doctors tried, nothing was putting my UC back in remission. After 13 days in the hospital in July of 2013 and continued treatment through September, my colitis progressed. It was finally determined through a colonoscopy in late September that my disease had progressed to a pre-cancerous state, and I was showing signs of dysplasia. Surgical intervention would be necessary. In October of 2013, the first of 2 J-pouch procedures was completed, and my entire colon and rectum were removed.
DW: Did the flare affect your work?
RG: During that period of time from July 13 to February of 2014, I missed almost 3 months cumulatively of work.
DW: What has helped you manage your disease the best?
RG: Whenever my disease was in remission, I always felt like exercise was the best way to help manage my UC. I used to go to the gym 3-4 times per week before I had kids. Now I find exercise in different places. Usually it's on the ball field coaching my sons' sports teams. Staying active and having a positive outlook are critical to my health.
DW: Are there any foods you stay away from?
RG: Obviously no food causes a flare, but foods can certainly exacerbate symptoms. I knew that if I ate spicy or certain foods that were rough on the gut, I might not feel so good later that day or for the next few days.
DW: Tell us a few fun facts about you!
RG: My favorite food is pretty much anything Italian. What else would you expect from a guy with the last name Girolamo? Although I must say the acid in tomato sauce certainly doesn't sit well in my gut, so I try to limit my Italian intake.
DW: What is your guilty pleasure food?
RG: I pay the price for a week after I eat it - but Taco Bell.
DW: What is your favorite TV show?
RG: I like watching sports. Any sports. Actually my favorite day of TV is NFL football on Sunday afternoons with my 8 year old son. We love to watch the New York Giants games. Then any NFL game that we can catch. I was a HUGE Breaking Bad fan, so I really dig Better Call Saul.
DW: What is your favorite way to relieve stress?
RG: My favorite way to relieve stress is to yell the F word really, really loud for a minute straight. I'm telling you it really works!
DW: What is the best piece of advice you would give someone newly diagnosed?
RG: 1) Find a doctor you love and trust. You need to have a GI doc who you believe in and who you can have an open and honest dialogue with about your disease.
2) Educate yourself. There is no better advocate for you than yourself. There are so many great resources out there to help you learn and get support for what you are going through. A great place to start is the Crohn's & Colitis Foundation of America.
3) Educate and teach others about your disease. It helps them empathize about your health condition. Educating others helps spread awareness for the 1.6 million Americans living with Crohn's disease and UC.