Thursday, February 18, 2016
When Your Doctor Doesn't Believe You
Last year my pediatric GI doctor of over 20 years decided to push me out of the nest and transition me to an adult GI doctor. During my hospitalization last year I faired well with the change in doctors as my new doctor and I started the song and dance of a newly established patient-doctor relationship.
My doctor specializes in short bowel syndrome, which is one of my conditions courtesy of my surgeries related to Familial Polyposis. At my appointment three months ago, my doctor explained that I have the proper sections of my small intestine required for absorption of iron and B12 and therefore do not require these medications. My hair stood on end, I knew differently. I've been taking these medications since my first surgery at age 9. I knew better. However, in a stubborn fit of wanting to prove my self knowledge and gaining my doctors trust in my knowledge, I agreed to forgo my medications for a three month trial.
I was unable to complete the three month trial without my B12. I began to experience exhaustion, sensitivity to light, and numbness in my extremities. I began to worry about the security of my employment under these conditions as well as my daily ability to function. Two weeks prior to the end of the trial period I restarted my daily B12 microlozenges and started to return to my previous state of health. However, I was able to forgo the iron the entire three months.
Lab day came and it was a show down between my doctor and me. Who would be right, who knew me better? He argued my iron and B12 wouldn't drop much in the course of three months from where my levels previously had been.
My B12 was excellent at 793...but I also had restarted my B12 two weeks earlier. With the results skewed, we'll never know how low it had been. I'm okay with that...I was more worried about my iron at this point. 9.4 with a saturation of 2%. Ding Ding We have a winner. Without an ounce of surprise my body held true to its trends. I do require iron and B12 and was ordered to immediately restart my iron.
At my appointment I requested an ultrasound of my thyroid as annual screening is recommended due to the elevated risk of thyroid cancer associated with Familial Polyposis. My doctor found annual screening to be overboard but nevertheless consented. I'm grateful he proceeded to order my thyroid ultrasound for that day as a small solid nodule was found in both lobes of my thyroid. Although most likely benign, it will be important to continue monitoring these nodules as solid nodules have an increased risk of malignancy compared to non-solid nodules.
With my body following my expectations, I'm hopeful that my doctor has gained trust in my self knowledge and understanding of myself. My body doesn't follow textbook protocols and never has. The sooner my doctors realize and accept this reality the better it is for my care. Perhaps now he will listen to me more with less argument about what my body does.
Sometimes doctor-patient relationships require give and take from both parties as the relationship grows into a partnership for care. Any new doctor-patient relationship may experience a few bumpy courses as both parties are learning the ways of one another and progressing toward a mutual understanding. If you are finding yourself on a bumpy course with your doctor, be open with your doctor about your concerns and work toward a compromise together. Although my doctor doesn't always see eye to eye with me, I'm grateful that he has been cooperative with my medical requests as our relationship becomes cemented.
Labels: Advocacy, Medical Providers, Symptoms
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
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Jenny, your comments ring oh so true. Not just the graduation from paediatric to adult, but moving area to area, and country to country. This "having to prove" that we estimates are not hypochondriac, but in fact experts on our conditions, is so tiresome but, at end of the day, we are able to vocalize our opinions. iCOEF.com represents the millions of children unable to question but undergo experimentation of treatments, procedures that they are unable to comprehend. Parents snatch at straws, believing they are following professional guidance that is often wrong. We have just completed 4 years of research that has been accepted for this year's world stromal nurses conference (WCET) to be held in south Africa next month. At which we will plead the case of child ostamates to be heard. 72 percent of which suffer from mild to severe PTSD post surgery manifesting up to 10 years post surgery. why,? Children's own feelings,thoughts, questions etc. are ignored....It has been categorically proved that children do understand and are able to grasp the intricacies of their illnesses. Yet their thoughts, wishes and opinions are largely dismissed.ReplyDelete
Rightly so you knew your body needed vitamin B, I myself discovered my own lack of vitamin D, but had to prove this to have intramuscular monthly injections.Eventually, it got so bad we had to sell up and move countries to achieve the levels needed. Since then we have encouraged all parents to demand vitamin level testing of their ostomy children to ensure correct levels are maintained.
ICOEF provides free puppets to all ostomy kids worldwide with stomas/bags to match their own. You have a voice Jenny. Continue to use it to forge a pathway for children who cannot speak for themselves.Liz grosser ICOEF.com
That's awful that so many children are ignored and yet is sadly not surprising. My surgeon and hospital doctors ignored and dismissed me when I was a child. It sounds like ICOEF is doing amazing and much needed work.Delete