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Getting Through the Darker Days
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Ann Hill DeBarbieri

The physical aspects of HPEN are often the subject of presentations at Oley conferences or articles in the LifelineLetter. The emotional or psychological aspects are less frequently discussed, but are often just as significant. At this summer’s Oley conference in Cape Cod, I was asked to make a presentation at a session entitled "The Dark Side of Successful Therapies.” I spoke about my personal experiences as I adjusted during various stages of my life on HPEN. This article is a summary of that presentation.

In 1987, just following the surgery that eventually led to my dependence on parenteral nutrition (PN), I experienced some serious problems that were attributed to my psychological state. Prior to my surgery, which was for removal of an intestinal tumor, I had been sick for the better part of a year and had experienced periodic hospitalizations and recurring infections. After surgery, my surgeon felt I should be on the road to recovery. However, I couldn’t sleep, I couldn’t eat, and I felt lethargic and anxious at the same time.

 

My surgical team called in a psychiatrist for a consult. I couldn’t relate to this particular psychiatrist, but he did perform a great service for me: He reviewed my chart and came to the conclusion that my problems stemmed largely from my being overmedicated. The medication I had been given for pain caused nausea, so I was given medication for the nausea; this medication caused anxiety. I was given another medication for the anxiety, and so on. After the psychiatrist discussed this with me, we agreed I would be taken off all medications. In less than a day, my appetite returned and I gained energy, and I slept that night for the first time in almost a week.

 

Following my recovery from this surgery, it became obvious that I needed PN. Although I initially found the mechanics of mixing my solution and "hooking up” somewhat overwhelming, I actually felt very positive about being on PN. I was extremely underweight and so depleted that I looked forward to the relief that PN offered me.

A Long Six Weeks

Over the next couple of years, my remaining small bowel adjusted, but I remained I.V. dependent, primarily for hydration. I went five years with no infections. Then, unfortunately, I developed a series of persistent infections. My physician, Dr. Lyn Howard, began to seek alternative means of keeping me in fluid balance. She suggested we try infusing I.V. fluids slowly through the night into a gastric button, and to determine if my system would absorb enough fluid this way, Dr. Howard asked me to pass a nasogastric (NG) tube on a nightly basis for a trial period. Initially, the fluids would be infused through the NG tube. If my digestive system could absorb enough fluids this way, I would be weaned off PN and start enteral fluids through a gastric button. When Dr. Howard first suggested the NG tube, however, I freaked out. I have lived through a number of obstructions and have a strong gag reflex, and subsequently I have a love-hate relationship with NG tubes—about 5 percent love and 95 percent hate. Dr. Howard convinced me to try the NG tube by offering to train me herself. She proceeded to demonstrate how I should pass the NG tube by using herself as a live model. As Dr. Howard passed the NG tube herself, exemplifying her great dedication, it was hard for me to say no. For six weeks or so I had to pass the tube nightly, and it was difficult each time. I hated sitting down to do it every night, but I knew it was a short-term situation, which made it easier to cope. In the end, I was able to absorb supplemental fluids this way and I went on to get the gastric button. 

Un-buttoning 

The greatest challenges I’ve faced in adjusting to HPEN came after additional small bowel surgery in 2001 left me with very little small bowel. (My colon had been removed many years before.) Prior to this surgery, I had anticipated I would lose only a short portion of my small bowel and was optimistic (in denial perhaps?) that I could continue to rely on supplementation through a gastric button. That hope was dashed when my surgeon explained to me what the operation had entailed. I reacted immediately with both terror and despair. It wasn’t the idea of PN-dependence itself that caused that reaction—it was my fear of infection.

 

During the recovery period in the hospital, I had difficulty sleeping and couldn’t stop crying. I felt very quickly that I needed immediate help in order to cope. Fortunately, my surgeon was receptive and connected me with a psychiatrist who was familiar with short bowel syndrome, PN, and related issues. The psychiatrist was helpful, but even more helpful in the short term was the antidepression medication she prescribed. It didn’t take away all my worries, but it did allow me to sleep and lifted me out of the depths so I could function.

 

Redefining Retirement

A few months later, after my physical recovery from that surgery, I began to face the reality that returning to work was not a viable option. Although I had never thought of myself as defined primarily by my job, I had a difficult time accepting the idea of disability retirement. When I was still working, I had looked forward eagerly to retirement. I saw it as an opportunity to try new things and to devote more time to pursuits I already enjoyed. With that in mind, I couldn’t understand why facing disability retirement left me so depressed. I went back on the antidepression medication I had taken right after my surgery and went for counseling. Over time, I came to realize that retirement was difficult for a few reasons. First of all, it was not on my terms; it was forced on me due to circumstances beyond my control. I had not anticipated that this would be an outcome of my surgery in June 2001. In addition, my physical limitations wouldn’t allow me to do all the things I had anticipated when I was looking forward to retirement.

 

With time and effort, I have made a good adjustment to my new lifestyle. This is not to say that I never have a "blue” period. I am especially subject to these in winter. So how do I cope? First, I try to find something to look forward to. It may be something as simple as having lunch with friends. Further, I try to find something I enjoy that gives meaning to my life. After searching, I have found activities that allow for flexibility. I can do them when my physical well-being allows and within the limited time available after managing my PN and hydration. These include visiting a nursing home with one of my dogs. I also do volunteer counseling by phone and the Internet from home for a Medicare rights organization.

 

I love to garden, and spring through fall offer me the opportunity to be outside and play in the dirt when I am physically able to do so. I have taken up music. I began playing the organ at the ripe age of fifty-one. These things keep me in a fairly positive frame of mind most of the time. However, I have also learned that an occasional pity party is not necessarily a bad thing. For me, this generally means a day when I make no pretense of doing anything productive and allow myself to feel down, rather than trying to fight it. I do my best to ensure that these days do not occur frequently and that I shake off the inertia they produce by at least the next day.

 

I’ve learned depression can be a normal reaction to the life-altering experience of becoming dependent on HPEN. This is particularly true when that dependency comes about suddenly and is not anticipated. My advice is to seek professional help if depression continues and/or begins to impact your ability to function on a daily basis. Ensure that there is no physical cause of your depression, such as my response to the medications after surgery. Antidepression medication may be advisable, as may be counseling in some form. As part of your long-term coping strategy, look for a reason to get out of bed each day. Finally, at least for me, faith in God truly can move mountains—even the ones you may feel you are carrying on your back.

 

more Calendar

2/6/2017 » 2/10/2017
Feeding Tube Awareness Week

2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week

5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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