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Appetite for Life: An HPEN Experience in Poland
I will briefly present only a few facts concerning my disease because I think the majority of LifelineLetter readers have experienced a lot in their lives and would prefer to read something optimistic, that will build positive emotions.
I am thirty-two years old and live in Cracow, Poland. Since 2002 I have suffered from Crohn’s disease. At the beginning the disease was taking its normal course, but this was not something I could expect for my future. I had surgery in 2005. I got married, became a father, and worked.
Unfortunately, my life changed when I had a disease flare-up in 2008. Due to abundant intestinal hemorrhage, I had four operations, which resulted in multiple enterectomies. After a month-long struggle to stabilize my condition, I was left with approximately 80 cm of small intestine and a stoma.
In the beginning after the surgery, functioning was very difficult. Daily eighteen-hour parenteral nutrition (PN) and the need to live with a stoma caused changes in my life. It took me a long time to accept the situation. Then I started to focus on things that I could do, while trying to forget the obvious limitations resulting from my poor state of health.
Fortunately, the coming months brought a gradual improvement of my health, so after one and a half years of treatment I could undergo another operation. Its aim was to restore intestinal continuity. Although I could not avoid complications, eventually the operation was a success. This step enabled me to look optimistically into the future.
It’s unbelievable, but in six months after this surgery, I had managed to put on over 10 kg (22 pounds) of weight. This has strengthened not only the need to consume more food taken orally, but has also allowed me to feel the proverbial “appetite for life.”
Since that time I have decided that I will try—to the maximum possible extent—to realize my life plans regardless of PN. One of the first manifestations of this idea was my participation in the EFCCA Youth Meeting in Norway in 2010. EFCCA is the European Federation of Crohn’s and Colitis Associations, which supervises a number of initiatives and projects aimed at improving quality of life among patients with inflammatory bowel disease (IBD) in Europe.
It was the first time I had to arrange the air transport of my PN bags. Generally, I experienced more kindness and help from the airport service people than trouble and unnecessary problems. In the end, I can consider the entire five-day trip very successful. I gained knowledge that has helped me during subsequent visits.
In June 2010, I set out together with my wife and daughter on another trip, to spend a lovely week on the shores of Lake Garda in Italy. This time we traveled by car with a mobile fridge in which we kept nutrition medicaments. During this journey we gained even more experience, as due to some damage we had to leave our car at a service station and look for a rental. I will also not forget another experience I had during this trip: my first dip in a pool after nearly three years (a break associated with a period of disease complications).
Undoubtedly, an appetite for life wasn’t missing during a trip to the Polish mountains with a group of other people suffering from IBD, and the ascent of a 1,300-meter peak, after a nearly three-hour-long approach.
I also couldn’t give up my favorite winter discipline, which is skiing. At the first opportunity, I went to a ski resort located 100 km from my house to enjoy snow for the first time after a long time. Although the effort I made was out of proportion to the result, it gave me a lot of satisfaction. Shortly after this week, I decided to spend the winter holidays skiing in Slovakia with my family.
These tours, as well as the opportunity to spend my thirtieth birthday with my family, friends, and colleagues, intensified my optimism in life. I try to exploit every second I am given and I set myself far-reaching goals.
The Side Dishes
Further evidence of this was my trip to Minneapolis, Minnesota, in 2011 for the “Alive, Well, and Even Better” Oley Foundation annual conference for parenteral and enteral nutrition consumers. There I obtained a huge dose of information that will pay off in future treatment. The Oley conference gave me an extra dose of positive energy and allowed me to get to know many interesting people.
Because I had been considering bowel transplant before the doctors restored intestinal continuity in 2009, I’ve visited Prof. Kareem Abu-Elmagd at the University of Pittsburgh Medical Center in Pittsburgh, Pennsylvania. It has been another great experience, because Dr. Abu-Elmagd welcomed me warmly and we have discussed all possible options for intestinal rehabilitation. I have been so amazed with his attitude that my journey to Pittsburgh will last in my memory for a long time. [Note: Dr. Abu-Elmagd is now director of the Intestinal Transplant Program at the Cleveland Clinic, Cleveland, Ohio.]
In addition, I can also boast of a British accent. I spent two weeks of my 2011 holidays traveling by camper through England, Scotland, and Ireland. In order to enjoy the natural beauty of the Cumbria Lake District, Highlands, Isle of Skye, and Cliffs of Moher, I agreed with my doctor to have a batch of nutrition bags sent to the airport in Dublin via courier, because the ones I took with me could only be stored in the refrigerator for one week. Although on our return our luggage looked like a come-back from six months rather than a two-week expedition, the enormity of positive memories and impressions of this trip will long remain in my memory.
PN in Poland
I think it could be interesting for you to know how I deal with my PN at the moment. Every week I get three 1.7 liter nutrition bags from my hospital (my PN provider). The bags have to be kept in cooling conditions and additional vitamins and a few other medicines must be added before I infuse. All this is done by me or by my wife. Our health care staff is responsible for our training and examination, and for providing all necessary medicines and IV accessories.
Usually I get my PN during the night. It takes approximately twelve hours. For two years I’ve been using a Fresenius Ambix Activ portable pump. It enables me to put my nutrition bag into a rucksack and then I don’t have to take my IV stand when I’m going away. That makes my life much easier. Unfortunately, the portable pump is not refundable in Poland, so the patient has to bear the cost of it.
Summing up, implementing all of the plans mentioned above has required a lot of effort and organization from me and my wife. Often it was associated with the pain and discomfort that accompany Crohn’s disease and PN. Never, however, will this outweigh the satisfaction and joy drawn from life on the rightful basis. I think that for all of us it is important to fight with the limitations, and as far as possible to prevent our disease from dominating our lives in any aspect.
That’s why in 2012 I set up an association for home parenteral and enteral (HPEN) consumers in Poland. With the amazing example of and experience from the Oley Foundation and PINNT (Patients on Intravenous and Nasogastric Nutrition Therapy, based in the UK), I hope it will be easier for me now. After just three months of functioning, “Appetite for Life” had more than fifty members, and we’re growing very quickly. I hope we will build a strong community of people who will support each other and share their experience in the nutrition field.
I have had the pleasure of attending a few European physician nutrition courses, to gain new knowledge and represent our association. Again it was a great chance to meet nutrition authorities from Europe and the United States. I met a member of the American Society for Parenteral and Enteral Nutrition’s (A.S.P.E.N.) Board of Directors, Ainsley Malone, MS, RD, with whom I had a nice conversation concerning Oley. The most exciting was the meeting with Prof. Stanley J. Dudrick, MD, who made a great impression on me as an outstanding doctor who gives us a chance to live. His warm personality has also shown me that he is an exceptional man.
Last but not least, I’d like to say I was sorry I was not able to attend this year’s Oley conference. We were expecting a baby! Our son was born in August, and now I am no longer the only man in my family.
Editor’s note: Marek is an Oley Ambassador volunteer and foreign affiliate. If you’ll be traveling in his neck of the woods, be sure to drop him a line at email@example.com.
In September 2012, Oley Executive Director Joan Bishop went to Cracow to visit Marek and participate in an Appetite for Life function. Please see “Oley Visits Poland” for more on the event.
LifelineLetter, September/October 2012