The following letter was written regarding the care (or lack thereof) that I received from a dietician when inpatient. In order to respect her privacy, I have eliminated her name and the hospital's name, for the copy I am posting on my blog.
To Whom It May Concern,
I am writing in response to my treatment and medical records summary from one of your dieticians during my last hospitalization. My hospitalization was from Jan 7- Jan 21, 2016. I was initially inpatient due to having surgery, specifically a colectomy with ileostomy. During my stay, I received EXCELLENT care from the GI unit (6th floor) nurses. They were nothing but exceptional. I have been a patient at this hospital for my GI issues for over 3 years now, with numerous procedures, tests, surgeries, treatments, and hospitalizations. The mass majority being positive experiences, or at least as positive as possible considering the situations. In order to keep things orderly on my end, I always request a copy of my medical records after hospitalizations and/or important diagnostic tests/procedures.
Usually the records are accurate, but I was dismayed over the summary that I read from my dietician this time, as well as her response to my needs while inpatient during January 2016. She came to see me during this hospital stay after my colectomy with ileostomy surgery. The moment she walked into my room, she knew exactly what her plan was and had no interest or patience to take what I said into consideration. She was in my room for less than 5 minutes, very cold, unfriendly, and was unwilling to listen to my concerns and issues. The tube feedings were not going well at all! I was in a lot of discomfort both with internal pain and intense nausea, but she was indifferent. She was persistent that I continued to “push” the formula and continue increasing the volume/rate regardless of how much pain or nausea I was having and noted that my nurses were not to stop the formula for anything. My mom was awestruck at the attitude that she portrayed while in my room. In fact, my mom didn’t even want her to return to my room at all.
As instructed, I continued the formula, making myself sicker and sicker until I was in so much distress that I could not sit up straight or stop heaving. The spasms and pain were off the rating scale and I was literally pleading to die between my screams, cries, and struggled breaths. Finally, my nurse received permission to stop the feeds for a few hours and then restart at a lower rate until we could try a different formula on Monday. When we switched to a different tube formula, it’s rate was quickly increased as well. Once again, my body rejected with intense non-stop pain and nausea. My dietician returned, but I was unable to talk, due to the horrendous pain and nausea I was dealing with. I literally was begging to die as I’ve never hurt so bad and for so long with no relief. It was literally a living hell. (To this day my mom still says that if it weren't for my love for my kids, she's sure I would have given up my fight to live and just let myself die- the pain created from trying to persist with tube feeds those few days was that severe.) I was literally vomiting my stool and when not vomiting, I was constantly dry heaving.
After some diagnostic tests it was finally determined that I was dealing with a post-surgical intestinal ileus. In other words, the severity of my pain, nausea, and vomiting were a result of my intestines not moving my formula. They had still not “woken up” from surgery yet. So I was pumping all of this formula in my J tube and it was just building up more and more because it had absolutely no where to go. Hence, what I had been trying to tell her all along. Finally, after a few more days the ileus corrected itself and I was able to successfully intake my formula once again, and tolerate it with less pain and less nausea. Granted, I was nervous about increasing the rate, but willingly did so until I was at a point that I could be discharged. I thought that this was all behind me - UNTIL I received a copy of my medical records.
Upon reading my records, I saw where my dietician had summarized my nutritional progress while inpatient. I became very upset, not only at what she said but also the inaccuracies in her report. Even though she had only met with me once for approximately 5 minutes, she stated that “Regardless of tube feed formula, I think her tolerance of rate advancement will be poor and this is more due to psychological rather than physiological in nature.” Maybe it’s me, but wouldn’t colonic inertia (the reason I was having the surgery to begin with since ALL sitz marks stopped completely in the beginning of my colon), pelvic floor dysnersia, gall bladder stones requiring gall bladder removal, as well as a post-surgical intestinal ileus ALL keep things from moving successfully, thus limiting the rate & volume that I was able to tolerate successfully at home or in the hospital setting!!! Those issues were not psychological! In addition, it is thought that I am having some intestinal hypersensitivities which are also being treated. I by far, WANT to handle more formula so that I can return to actively living again. Yes, I was reclined in the hospital on Jan 11th due to the level of pain & nausea that I was having post-surgical. At home, I run the feeds during the day to help keep things “moving” as much as possible instead of at night when sleeping. Additionally the “history” that she stated on in my medical record was incorrect. I first received care from this hospital in April 2013, my feeding tube was placed in May 2013 (almost 3 years ago, not 1 as she noted), I have not eaten a meal since Feb 2013 (over 3 years ago, not 1 as she stated). I was (still am) continuing to lose weight. Yes, I was "overweight or obese" according to paper guidelines - however, even though she noted I could still lose more weight the goal is for me to maintain my weight where it is. My doctors, family, and I don't want more weight to be lost right now.
Once again, it is not a normal practice for me to question or complain about the health care I receive from my medical team and/or hospital. I am not a health care professional and I’m aware that I don’t know everything there is to know about my health or nutritional needs. I admit that I’m not perfect. However, this situation, especially the lack of empathy, disregard, and disbelief from this dietician was very troubling to me. I do not appreciate her blaming my difficulty for tolerating tube feeds on my lack of trying or psychological reasons, when I have been having continuous health related issues that have been proven to create issues with my nutritional intake.
As a chronic illness patient, I know my body better than anyone else. I deserve to be respected for my concerns & listened to about my struggles without judgement. My GI & my therapist are familiar with my case and understand my health journey well, are aware of my nutritional frustrations, and realize how hard I am trying. I am not a “difficult” patient. I follow physician orders and suggestions as instructed. My health may be complex and challenging, but I give my all, trying my absolute best not to complain until I can’t take the symptoms or side effects any longer. Sometimes even hesitating and staying quiet longer than my family or even medical team believes that I should.
Disappointed & Frustrated,
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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