Specialized Nutrition:  The Patient's Perspective  (Part III)

By Elizabeth V. Tucker and Darlene G. Kelly, M.D.

 

Part I of this article addressed issues of transitioning from patient to consumer and adapting to using nutrition support therapy at home. Part II focused on complications, the role of the Oley Foundation and psychosocial issues.  Part III will discuss travel, children on  HPEN, the long-term outlook and other issues such as ostomies, depression and impact on families.

Traveling

EVT: My lifestyle before I went on HPN included a great deal of travel because of my husband’s job. The fact that being HPN could curtail that never even occurred to me. Several months after I started my therapy I wanted to attend a conference in Montreal, Canada. I just called up my home care company and asked what we needed to do to make this happen. This was the first of many trips I have made out of the U.S.  During the 11 years I did stress management and coping skills for companies and families dealing with chronic illness, I traveled all over the U.S. and Western Europe. For the first several years those trips were made I had to have my home care company send a pump and pole to my various destinations. It was in the days before ambulatory pumps. My first trip to Europe, with an ambulatory system, was for a National Health System Conference in Cardiff, Wales. Since that time I have been to Switzerland, Austria, the Netherlands, Italy, Germany, and the island of Grand Bahama. The secret to a successful trip for someone on HPEN is plan, plan, plan and then plan some more.

I always take a letter from my doctor in English and the language of the country I will be visiting which tells why I am on HPN and need the medical supplies I have brought with me. I always try to find the name of a medical professional or facility in the country that can give me the specialized care I might need. I work with my home care company to find out if there are any restrictions on bringing medical supplies into the country and whether I can ship anything beforehand. Check with the airlines to see whether you are going to have to pay extra for the additional baggage and weight. When they realize these are medical supplies, they may waive the fees. I also let them know that I am on a medical therapy during the flight but that I won’t need any assistance.

Travel is an essential part of my life and I am always amazed when I meet people on HPEN who don’t know they can go almost anywhere they want to, if they just plan, plan, plan. People I know on HPEN have taken cruises, gone to China, as well as Eastern European countries. While there may be places I wouldn’t want to visit for sanitation reasons, I always feel the sky is the limit as far as travel is concerned.

DGK: The consumers in our HPN program have traveled throughout the world, even Singapore and Brazil. Those who have planned ahead and researched the rules of the destination country have had very few problems.  I have encouraged them to fill out an abbreviated medical history form that can be obtained from the Oley Foundation web site. This provides information to a potential treating physician should treatment abroad be necessary.  I also encourage the consumer to travel with the clinician’s phone number readily available. A recent issue of the LifeLine Letter includes advice to the traveler.

I do encourage those who wish to travel, as I feel this is an important part of maintaining normal life activities.


Choices and Attitude

EVT: You may have already gotten the impression that I believe I am the one responsible for my quality of life whether on HPEN or not. That is absolutely correct! I believe that when I wake up every morning I make a choice about whether I am going to have the best day possible or a miserable one. Then I do everything I can to make good things happen. That’s not to say that I don’t have bad days. I do. I may have a bowel obstruction and have to stay in bed or go into the emergency room. I may have sepsis. My Crohn’s may be out of remission and I am in the bathroom 30 to 40 times during the day.  I just take those days about 30 seconds at a time and still be as positive as I can be about each moment. When the problem is over I let the pain or difficulty go, forget about it and don’t carry it around with me. I enjoy the good that is in every day. It may be a beautiful flower or the warmth of the sun. It could be a call from a friend or family member. It might be the love I feel from my pets as they stay close to me. I can always find something.

I am also a great lover of clichés. They help explain my attitude in just a few words and can remind me when I am having a bad day that there is always something good in my life. Here they are:

I will bend but I won’t break

A moving target is harder to hit, so I just keep moving.

I may not always have control over what happens to me, but I do have control over what I do with it.

Do unto others, as I would have them do onto me.

Children on HPEN

EVT: As I mentioned earlier, I have met and seen grow into wonderful young adults a number of babies, toddlers, and children on HPEN. They are amazing! This is their life and you rarely see self-pity or anger. They are much better at adjusting than most adults. One of the secrets of healthy kids on HPEN, from my perspective is the parents. If the parents treat them as individuals and, as much as possible, as normal kids, they seem to blossom. If the parents are overprotective and neurotic about the child’s illness or therapy, it seems to transfer to the child.

DGK: Children on HPEN present a challenge to the parents and to the siblings, as well. The process of growing up and transferring responsibility for care from the parent to the child can be a difficult time for everyone. This is one of many situations where the Oley Foundation can be particularly helpful. Many parent members of Oley have successfully accomplished this transition and can be a great resource for those about to enter this time in the child’ life. Other issues that the child encounters include leaving the protective setting of “home” and entering college or the working world. Each of these steps is a new experience for the HPENer and his or her parents. Issues related to employment can be problematic, sometimes causing the interviewee who discusses his or her HPEN to be rejected for the job. Often a social worker or career counselor can be quite helpful with advice to the HPENer.

Other Issues:

EVT: As you can probably tell, I look at life from a positive perspective. Does that mean that I have never experienced any problems? Of course not. I have actively worked to find solutions when problems occur, and I don’t carry them around with me when they are over. This section is a good opportunity to discuss some of the common problems that consumers on HPEN experience.

 

Ostomies

EVT: I, and many others on HPN, have an ostomy. The more bowel you have had surgically removed, the more the stomal output volume and liquidity seem to increase. Every time you go out of the house you have to know where the nearest bathroom will be. If you are on a road trip you have to be able to stop at a moment’s notice or the bus, train, or airplane has to have a bathroom. Many of us restrict what we eat and the amount of liquid we consume in an effort to have some control over how often we need to use the restroom facility. One piece of information that has been very helpful to me, and I didn’t learn it until a few years ago, is that osmolality of oral fluids can have a tremendous impact on my ostomy output. Even when my body is telling me to drink, drink, drink, putting any fluid such as soda pop and even water will just make my diarrhea worse and I will become more dehydrated and thirstier.

DGK: In the case of marked thirst the use of oral rehydration solution offers an opportunity to drink a fluid that improves absorption and minimizes the thirst. An important approach to minimizing stomal output is to limit high-osmolality fluids and to sip oral rehydration solution during waking hours.

EVT: I can’t tell you how many times I have had my ostomy appliance tear or separate from my body and I had a catastrophe on my hands. It is another one of those opportunities where some aggravation and frustration are in order, but a positive attitude seems to make the cleanup go faster. Waking up at night in a large pool of feces can be particularly aggravating. As far as I know there is no perfect solution that can keep these things from happening, so you just have to adjust.

Body image is another important issue to be faced, particularly if you are single. I dated and was fortunate that the men I had a relationship with never had a problem with all my accoutrements (ostomy, central catheter, etc.) For the consumer, it may mean avoiding close relationships because of assumptions that a partner would not be able to cope. On the other hand, these issues in fact, do negatively influence some relationships.

Impact on Families

DGK: Because relationships are very individual, the way that families cope with this therapy are very individual. On one end of the spectrum is the overprotective spouse or adult child who causes the consumer to be overly dependent. In the other extreme, the consumer may avoid integrating the other family members into the experience and makes decisions independent of everyone else, causing family members to feel very shut out of the process.  Those consumers and families who are able to find the “middle of the road” and work together seem to do better in the long run.

 

Depression

 

EVT and DGK:  Depression can also be a huge problem for those on HPEN.  If the disease process is not under control, and you feel ill day after day, it is hard not to become depressed. If it only occurs for a few days or a week or so and then things get better and the consumer feels better, that is one thing. What is much more difficult is when it stays with you and every day is depressing. It is important that clinicians dealing with your care be watchful for such symptoms. Often, however, it is necessary for the consumer or a family member to speak up and discuss symptoms of depression. With the useful drugs available for depression and anxiety, there is no need for a person to suffer.

 

Some individuals who are on HPN and many on HEN are unable to eat normal foods. This can result in a major psychological problem. Not only does the HPENer have to adjust to actually doing these therapies, but he or she also suffers loss of a significant part of normal daily life. This can result in a grieving reaction because of his loss.

 

The Long-Term Outlook on HPN

EVT and DGK: While there will probably always be problems associated with being on HPEN, there seems to be more and more attention being given by medical professionals to making these therapies safer. Just since I have been on PN they have changed some of the compounds they use to lessen exposure to aluminum.  We have ambulatory pump systems that allow one to go almost anywhere. More and more attention is being given to fighting PN-related bone disease and liver disease. When other options fail we now have liver and small bowel transplant.

An HPN consumer has recently published her experience as a transplant recipient.

While we wouldn’t wish these therapies on anyone. We are very grateful that they exist and are improving almost every day.