Crohn's and Colitis in the world: United States of America (USA) 

Our series " Colitis and Crohn in the world " continues. In this occasion, we bring you an interview to a citizen of The United States of America (USA). We have seen European and Latin-American countries, but the interesting of The United States is the differences of his system of public health with regard to which we have in Spain. For this, I recommend you the reading of this interview.

 

Name: Dennis Frohlich
Disease Ulcerative colitis
Age: 23
Country: United States of America

ACCU Málaga: How long have you been suffering your disease?
Dennis: I was diagnosed with ulcerative colitis in the summer of 2007. In the summer of 2008 I had my first of three surgeries. My surgeries finished in December 2008 and I have had no major problems since then.

ACCU Málaga: How long took it to the doctors to diagnose your disease from your first symptoms?
Dennis: It took about three months.

ACCU Málaga: Did the doctors diagnose any wrong disease before determining it was ulcerative colitis or Crohn’s disease?
Dennis: No.

ACCU Málaga: How many periods of crisis or outbreaks did you suffer?
Dennis: I suffered two major flare-ups, one putting me in the hospital for 4 days and the second putting me in the hospital for 12 days. I also had two minor flare-ups that I was able to control with prednisone.

ACCU Málaga: Which medicaments did you take?
Dennis: I started taking Asacol for a couple months. Then prednisone at my first flare-up and stayed on that for 10 months. I tried azathiaprine and Remicade during that time but they didn’t help much. I also tried several other medicines in the hospital but I don’t remember which ones those were.

ACCU Málaga: How were the results?
Dennis: Prednisone was the only thing that worked for me. The other medicines didn’t. But prednisone has bad side effects and I couldn’t stay on it forever.

ACCU Málaga: Did you look for any other kind of help? Alternative medicine, psychology....
Dennis: I did not try any other kinds of alternative medicine or counselling. I somewhat tried changing my diet but didn’t try that very hard.

ACCU Málaga: How were the results obtained with these therapies?
Dennis: I didn’t think these therapies could help so I didn’t try them.

ACCU Málaga: Did you have any kind of operation due to your disease?
Dennis: I had three operations. The first removed my colon and gave me an end ileostomy. The second operation removed my rectum, constructed a J-pouch, and gave me a diverting loop ileostomy. The third operation took down my ileostomy and I have been using my J-pouch ever since.

ACCU Málaga: Why did you decide to have an operation?
Dennis: I was out of medicine options and knew surgery would be inevitable. I was also at a free point of life out of school and without work so I thought that would be the best time to do surgery.

ACCU Málaga: How did you get information about the operation and its consequences?
Dennis: I talked to my doctors in my hometown and the doctors and surgeons at Mayo Clinic in Rochester Minnesota. Mayo Clinic has the reputation for being a top hospital in the world so I trusted what the doctors told me. They have done more of these operations than anybody else.

ACCU Málaga: In which city and hospital did you have your operation?
Dennis: Mayo Clinic in Rochester, Minnesota, USA.

ACCU Málaga: After it, which is your opinion about having an operation?
Dennis: I fully support surgery and think it gives people a lot of relief. It isn’t a perfect solution but it is better than living with colitis and living on medicine that only half works. I have no complaints about surgery and recommend it to many others.

ACCU Málaga: Are you on a special diet due to your disease? Describe it briefly.
Dennis: During my flare-ups with colitis I tried to stay on a low residue diet but not very well. After my surgeries I stayed away from raw vegetables and hard food like nuts for about a month. Now I eat whatever I want but I still don’t eat raw vegetables very often because they make my stool very watery.

ACCU Málaga: Do you think there is a high incidence of this kind of disease in your country?
Dennis: From what I hear from other people there are over a million people in the United States suffering with colitis or Crohn’s disease. Many tens of thousands have ostomies. However, not many people talk about these diseases or operations so it doesn’t seem like they affect very many people.

ACCU Málaga: How do you think is the general knowledge of family doctors about Inflammatory Intestinal Diseases in your country?
Dennis: I think people are relatively clueless about what these diseases even are. I know I was. Before I was diagnosed with ulcerative colitis I had never heard of it before. I had heard of Crohn’s disease but didn’t know what it was. And I have never heard of an ileostomy or colostomy.

ACCU Málaga: Which medicaments are at the disposal of ill people for treating their disease? Can you find medicaments like Infliximab or Humira?
Dennis: There are lots of medicines available in the United States for this disease. The US pharmacy companies are the ones who invent most of these drugs so they are very available. Sometimes they are expensive but they are starting to come out with generic versions. And new medicines are sometimes expensive but oftentimes insurance companies cover all of that cost. That’s what happened when I was on Remicade.

ACCU Málaga: Are these medicaments financed by the Public Health System (or any similar system at your country)?
Dennis: These medicines aren’t directly financed by any Public Health System. People who are very poor can probably get help but that wasn’t the case with me so I had to pay for the medicine. But I also had insurance through my parents and then my job, so the cost wasn’t usually high. Sometimes new medicines like Remicade get tax breaks and are considered more charity medicines because not many people need them. So while Remicade costs around $15,000 US dollars a year, my insurance covered all of it because of the tax breaks.

ACCU Málaga: Is there any kind of associations of ill people in your country? Are you part in any of these associations?
Dennis: The Crohn’s and Colitis Foundation of America is for people with these diseases. The United Ostomy Associations of America is for people with ostomies. Those are the two big ones. I am not directly involved with either of this organizations since there aren’t any close to where I live, but I will probably get involved in the future.

ACCU Málaga: Where do people with this kind of disease go when they need information about new treatments or new advances?
Dennis: Often times people talk to their doctors and hospitals first. But people are also very skilled at looking on the Internet so more and more people are going to the Internet to learn about these diseases and learn what it is like living with the diseases.

ACCU Málaga: The average of knowledge of a patient about his own disease is high, medium or low.
Dennis: In the beginning people know almost nothing. They also have little knowledge about an ileostomy when they get surgery and little knowledge about a J-pouch. It seems to take people six months to a year to really understand their disease and how to manage it. Some people it takes longer because they don’t put the time into learning to understand their disease.

ACCU Málaga: What do you think the Health System in your country should improve in connection with our diseases?
Dennis: I wouldn’t change our health system in this country. It is expensive for people and it is hard if you don’t have insurance. Those of us with the disease pay higher insurance than other people. That doesn’t seem fair to some people but I would rather pay more myself than to ask other taxpayers to pay for my health. Life is sometimes a constant fight against death and since death always wins it’s a hard fight. Also, I think that when people have to pay for their medicine and treatment themselves they care more about their healthcare and make wiser decisions.

ACCU Málaga: In your personal experience: Are you satisfied with the medical treatment, resources and means you have had or do you think it would have been different if you were in another country?
Dennis: I am very satisfied with the medical treatments available. I think our doctors are knowledgeable and lead the world with treatment and research. Hospitals could do a better job of education patients about what it is like living with these diseases instead of just telling us and basically leaving us on our own. They don’t always go out of the way to offer emotional support so that’s one area they could improve on.
 

Finally, we want to be grateful for his collaboration to Dennis Frohlich in this interview and to encourage him to continue reaching in his blog, the information that so much can help the patients of crohn and colitis. Thanks, Dennis.

 

Also we want to be grateful to Belén Ruiz for her contributions in the translation of the interview and to Toñi (Conil) in the accomplishment in english of the questionnaire. Without your collaboration it had not been possible to present the interview in this web . Thank you.

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