If Only My Doctor Knew...

Most of us have things we don't completely share with our doctors. Things you don't worry about and don't find necessary to disclose. You get to a point where you know you're fine but you don't want to rock the boat with minor details or you don't want those minor details to make you not fine. You find your balance, when you know you're beat and you have to fess up to your doctor for help and when you can let it slide and it'll work itself out.
Case in point, my doctor freaks about some things. Granted, some are understandable. Some I tend to disagree with and let the information slide.


She's strongly against her patients eating sushi or getting tattoos due to risk of bacteria and infection. Now I won't get a tattoo but I will not give up my sushi. And so I keep that to myself and we're both happy...me with a tummy full of sushi and her thinking I'm not at risk of food poisoning from sushi.


Every visit my doctor asks me how many times I use the restroom. I've learned over 20 years, if I tell her 6-8, she doesn't like it but accepts it. I never actually counted, I just made a rough guess and learned that 8-10 times a day answer caused my doctor freak out and talk about having an ileostomy again. For both of our sake's, I stick with the 6-8 story. But then one day, I actually counted for a full 24 hours. And if I told my doctor that my average 24 hour period is 15-20 bowel movements...she'd really, really freak. I'll go back to an ileostomy when I feel it's needed, not before. And honestly, I'm ok with my 15-20 bathroom trips, I'd rather have that than too few and feel constipated and bloated.


Another frequent question she has is how many bloody stools do I have. It's hard to tell because it's not a regular occurrence but when it does happen, it doesn't worry me. I've learned that if I don't or am unable to use the restroom for a long period, my intestine will become irritated and bleed. It typically lasts a few hours, always less than 8, and it's over. Only today has me a bit worried to be honest. I've been having bloody stools for 24+ hours now, I don't remember this ever occurring for such a long consecutive time. I'm not rushing to call my doctor though, I'm going to try to let it slide. But yes, if it continues for the next 4 days, I'll call my doctor on Monday and fess up. Because I will have to admit that 5 days of constant bleeding is a problem. For a couple reasons I'm really hoping this will stop before Monday though so I won't need to share this bit with my doctor. I'm pretty sure she'll make me have a scope if she knows about this and I don't want this to be a regular question/concern to discuss during visits.


An instance I don't think I've ever actually told her is that I get overheated rather easily, particularly more so since the last year. I've gotten where if I'm inside during winter, I'm usually hot. When I'm over heated, I enter a daze where it takes a lot of effort to walk or talk, I'm sweaty and clammy, I feel like I've entered a tunnel yet my vision is fine. It takes about 3 hours before I feel normal again after this happens. This has happened twice this month and the last time I discovered that my blood pressure and pulse rate were both high. A nurse advised this could be caused by dehydration. The overheating happens regularly yet infrequently enough that I've never thought to tell my doctor. But now, I'm curious about the blood pressure connection and I'm even wondering if my blood pressure fluctuates often without knowing it until I'm overheated.


My next visit is in February and so the dance of  picking what I find necessary to disclose and what I will let slide will occur once again. We shall see how the dance turns out.

Zebras and Ducks

Anyone with Familial Polyposis is already a rare individual. National Registries show FAP occurring in 2.29-3.2 per 100,000 individuals. And if you're anything like me, this rarity is only the beginning of rare health issues.

My GI doctor has for a long time, quite accurately told me that:
 "You look like a duck, act like a duck, sound like a duck. But actually, you're a zebra".
She couldn't be more correct. She tells me that there's no reason I should have the severity of stomach pains, bloating, severe malabsorption, and issues with rich foods that I do. She has stated for years that I would be a perfect case study for medical students because I'm not your textbook example of a FAP patient, what is typical is never typical with me. Everything is the opposite. Doctors check your abdomen for a quiet gut, they actually shouldn't be hearing constant gurgling. However, because I'm always the opposite, my doctor knows that if she doesn't hear steady gurgling from my abdomen, I'm in serious trouble.

It's not uncommon for health issues from FAP to lead to other problems. And it makes sense. With years of malnutrition, other parts of your body are at risk. My neurologist and my physical therapist don't know what caused my bulging disc but my malnutrition issues, past and present, definitely have further complicated my neck issues as discussed in my previous post. Since my last post, my physical therapist diagnosed me with an ALAR ligament sprain and told me this is a rare occurrence and his first in his 20 years of experience. Seriously!? Well, go figures. Why not, that makes a total combination of 4 different issues with my neck - disc, joint, muscle and ligament. I'm pretty sure that the only thing left is for a broken bone. Ha. My neck issues change rapidly, improving and worsening without warning. And due to the constant unpredictability, my physical therapist has joined my GI doctor on the zebra train and now refers to me as a lil' zebra. I can't help but laugh, it's only the truth.

Being a zebra in a world of ducks can be frustrating. You don't really fit in, medical providers don't really know what to do with you, you're more likely to undergo much more testing and procedures in efforts to rule out what normally would be the cause of symptoms, more treatment methods you have to sift through in a trial and error basis. In spite of all the frustration, there is a positive side that the ducks won't experience or contribute to the medical field.

When you are a zebra in a duck suit and you have good medical providers, they can be armed with this knowledge to look for the stripes instead of the feathers, to remain open minded to alternative answers and explanations and to consult more with others in their fields. Consultation is beneficial to all involved - increased understanding, awareness and opportunities for learning and different treatment approaches to complex health issues.
So embrace your zebra stripes. I've learned to wear my zebra stripes as another badge of honor. Nothing makes me smile quite as much as when a medical provider, like my physical therapist, declares "There is nothing normal about you".
Nope, there isn't. And that's what makes me so special, within and outside of my medical issues.

20th Anniversary with FAP

I'm not very good about remembering health milestones. I don't usually think about how many years since my first surgery or my last and when I do it's not typically anytime around the anniversary. But this year I did remember that it's been 20 years since I've started with my GI doctor. 20 years since diagnosis of FAP, 20 years I've been listened to and 20 years I've battled what FAP is and can become. 20 years.

I had such a difficult time getting any PCP to listen to me and my parents to obtain the necessary referral to see a GI specialist. I'm not sure how after such a fight for the referral I finally obtained one for the best pediatric GI specialists in the state and who is well respected outside of the state. But I did and I'm so grateful. I haven't always liked my doctor. As I mentioned in my last post, there were several years that I hated and blamed her. As I started my own psychological healing, I've realized how terrified I am of losing her as my doctor. I greatly admire and respect her. She has always stood by me and fought for me, whether with other doctors, hospitals, insurance, schools and jobs. She is my greatest advocate. 20 years I've been so fortunate.

I've seen a lot in the last 20 years with diagnosed FAP. I've had seven surgeries, more than enough near death experiences, endured PTSD, cycled in and out of severe depression, given the prognosis of stomach cancer by age 30 (I have two more years to make it past that prognosis!), completed school and maintained full time employment, got married and looking at surrogacy. I have good and bad days like everyone else but I'm hopeful that the worst days are behind me. 20 years it's taken to get to the place I'm at now.

Who knows what the next 20 years will hold. There's always guaranteed sadness and happiness. I do know that I won't have my doctor for another 20 years, it's very likely in that time period to develop cancer again, I hopefully will have adult children by then., I am likely to have lost and gained more family and friends. These are all realities I keep tucked away, taking it one step at a time.

That's how the last 20 years have gone, one step at a time. Although at times it felt like crawling steps and at times giant leaps. I look forward to seeing the future and what's in store but for now, I'm going to savor where I am at now and honor what has transpired to get me here. Our trials and our joys deserve to be honored, they help shape us and direct us in life.

20 years, I've made it. And here's to another 20 years.

Compliance

Through the years my GI specialist has come to know me extremely well. She knows when I tell her I'm not doing something, I mean it. She knows when I'm not being completely compliant like I should and she even knows some of my tricks sometimes. She knows my limits and she knows not to push me further than what I can handle physically and emotionally. She knows how to advocate for me, she knows my mistrust and paranoia, and how to ensure my safety, comfort and well being. She knows my coping regiment and she knows how I best respond to care. She knows me.

I've told her I'm not allowing any rectal exams without sedation nor will I take any laxatives, enemas, or suppositories for a colonoscopy or endoscopy. Hence, why I haven't had either exam since 2007. She's brought up having another scope done since 2007, and I have agreed to undergo another scope if I can fast, and only fast, for the scope. But I also know that if I don't remind her to schedule the scope, I won't have to mess with it at all.  Yes, this could prove a grievous error on my part. I was advised I'd have stomach cancer by age 30 - in 2 more years. But that was 2 or more scopes ago and my last scope there weren't any polyps of any kind found that time. I don't know what I'd do if I had cancer that couldn't be treated by surgery. I don't know if I would consent to chemo or radiation. My grandfather had radiation and it shattered the rest of his intestines. Yes, that was back in the 1980's so a lot has improved since then. Yet, I can't forget the complications my grandfather suffered. I don't know if I could withstand the physical and emotional toil that accompanies chemo or radiation. I just don't know. But I do know, that I'm not worried about it.
I did have a CT scan with dye in 2011 that didn't show anything remarkable, so I know at least at that time I didn't have any large polyps or tumors. I did discover that my kidneys are connected in the back instead of the front, as they're supposed to be. I don't know why there is always something abnormal about my kidney design. My right kidney is small and in front of the pelvis instead of behind the pelvis, so it's not protected.

I've stopped medications, such as Sulindac and Celebrex, simply because I got tired of taking them. I am faithful in my Lomotil and my Iron though. After not taking Sulindac and Celebrex for so many years, when I finally felt guilty and asked if I should start taking them, my doctor must have known better because she told me not to worry about them!

I've been horrible about taking my B12 regularly since I got married. I usually miss 2 months and do great the 3rd month - before my regular GI appointments. Then I dose up quickly on my B12 to make it look good. This month she caught on though, she questioned the date of B12 and the date of lab. She just smiled her knowing smile at me and suggested I take my B12 regularly. Which I've been dong better at. This month I haven't missed my series at all. I also got new syringes - insulin syringes - and boy do they make a difference! They're much easier for me to sit through and much easier for my husband to use.
Yet, I feel more tired this month than I have in several months of not taking my B12 regularly. Every day I end up taking an involuntary nap - sometimes multiple! In discussion with other FAPers, I've noticed that some also have trouble with Vitamin D and even their Thyroid that makes them fatigued. If this continues, I plan to ask my doctor about these as well.

Then sometimes you're compliant and a doctor labels you as non-compliant. For instance, my GI doctor wants me to have a 2nd bone density scan. My first bone density scan was in high school  so well over 10 years ago. I agreed to go for the scan again, I've even called to remind my doctor's office about it. However, the bone density doctor has me labeled as non-compliant for supposedly cancelling an appointment and not rescheduled in 2010. Two things beg the question here.

1. Why would I have a random, sudden appointment scheduled at minimum 7 years later without my GI doctor or myself knowing about it?  I never had a follow up appointment with this doctor after the bone scan. My GI doctor reviewed the results with me beyond any that were given at the time of the scan. Why would I need a follow up appointment 7 years later and not more regularly in between?

2. Why would I recognize the doctor's name after 7 years when I had been to the doctor one time? I know the names of my past doctors and I even know the names of a couple doctors who regularly consulted with my GI. I do not remember the names of doctors I met one time. 

And yet, this doctor won't see me again in spite of the unraveling of her office's excuses. I actually take offense to this. My doctor is amazing and obviously finds reason to keep me as her patient when I should have transferred to an adult GI 10 years ago. When I am forced to transfer, my doctor already has information prepared for my future adult GI as to how to care for me and how to respect my limits due to my past trauma. Even the adult GI, who I plan to transfer to when so forced, asks my GI doctor about me regularly in preparation of taking over my care.

So sometimes, even when you're compliant, someone or something will attempt to make it appear otherwise. In such cases, it's a great thing to have a strong doctor advocating for you. And if you don't have such a doctor, I highly recommend finding someone else. I've been there with a negligent, uncaring doctor and I paid for it. When you find that strong doctor, who knows you, your body, strengths and limits, so well - hang on to them for dear life. There are a great many of doctors like that I've found.

Painful Distrust

The betrayal of someone once trusted with your life is so significant it often is emotionally and mentally scarring. In Medical Angels and Demons, I shared experiences of blessings and torture with various medical providers I've had throughout my life. The betrayal of trust I suffered by providers at the children's hospital I attended as a child continues to haunt me to this day.

I am extremely suspicious of other medical providers until I am convinced that the provider is competent and has my best interests as a patient at heart. I am filled with regret, pain and rage when recalling experiences with these past providers and my trust with other providers has been tainted. My life would be completely different if I had a competent surgeon, if my care hadn't been allowed to be primarily directed by those 3 residents, if the emergency room team had been thorough and attentive. Had the surgeon listened to my parent's concerns my ostomy wouldn't have been placed on the wrong side allowing for my intestine to wrap around itself and other organs, if the emergency room team hadn't sent me home with the simple diagnosis of being a whiny child then the extent of dead intestine could have been prevented, if those residents hadn't been charged primarily with my care rather than the surgeon, perhaps more testing and treatments would have been completed for better, more directed care and treatment. The pain inflicted and level of distrust between these past providers is so great that it is deeply ingrained in association of the hospital and its affiliates as well. I would never be able to work for this hospital unless absolutely required to in order for survival. I would never be able to bring myself to taking any child of mine to the same hospital, even though it is a children's hospital that is supposed to be great with children and advanced in the care and treatment of children.

Never estimate the stupidity of this hospital or the individuals who work there.
A few months ago I suddenly realized that I should be aware of who the residents are that were assigned to me as a child so that I may prevent unknowingly becoming associated with them.
I can't even trust the hospital's medical records department to provide copies of, guess what, medical records. In my quest to uncover the residents' names, my requests for medical records from the children's hospital has been refused twice. The first time I was told that the request was illegible, even though the medical records staff could read my name, phone and address well enough to call and mail me a refusal. When questioned about the illegibility, I was then told that I must not have completed all the required information. My second request has yet to receive any communication whatsoever, even though the records department advises that records will be provided within 5-7 business days. I've resolved myself that I will be forced to go through my doctor's office and dig through my old charts in order to find the information. I would have done this originally but I thought it would just be easier to go through the hospital's medical records directly. How I was wrong. It'll be easier to sift through my multiple, overflowing charts at my doctor's office myself than to have anything sent to me from the hospital's medical records department.
I also think poorly of the hospital and its affiliates for charging individuals money to visit admitted patients, attend doctor appointments, or for patients to park at the hospital while receiving care. Yep, you read that right. I understand a hospital not wanting non patients or hospital visitors parking in the hospital parking lots, but there are other ways to deter illegitimate parkers.

This month I plan to start delving through the old records at my doctor's office to uncover the truth of the identities of those residents and protect myself from potential future harm for those individuals. I hope that those residents are now competent practicing doctors, but I would never be able to bring myself to trust them again with my health and life.
Sometimes we must make extra effort in order to protect ourselves and help calm our neurosis developed during chronic illness and medical traumas. This is a survival tactic and with such efforts, we are more apt to survive.

Medical Angels and Demons

I had another routine follow up with GI doctor this week and had great results. I've been taking my B12 regularly for 3-4 weeks now and my B12 jumped from 400's to 800's! It's in the top third of the normal range, I'm not sure I've ever had such a high B12. Course, I don't really notice any difference when my B12 or hemoglobin is low, it all feels the same to me. While visiting with my doctor during my appointment, we started talking about that 1st year of surgeries and previous and future doctors. In my last post I shared about my experiences with my 1st surgeon and the treachery that accompianed him. During my appointment I learned some new information that I didn't remember or know about the medical demons that continue to haunt me. My second complication from my 1st surgery, when I went to the ER for stomach pain that actually was caused by my intestine twisting around itself and surrounding organs my surgeon was actually out of town and it was the 3 residents alone that decided that nothing was wrong with me and told me and my parents that I was merely a "whiny child".  This doesn't change any of my thoughts or feelings regarding my 1st surgeon but it reinforced my contempt for the 3 residents. It is because of these residents that I don't trust any resident. To add insult to injury, when I returned again to the ER after that incident and adequate testing was completed to discover the cortortion and emergency surgery was required as it was a miracle I hadn't died during the night from the lack of blood flow. The residents were aware of all this and no statement to my parents was made, no apology that it had led to near death and could have been prevented, no indication at all that these residents had any compassion or understanding for what I had gone through under their care. If they had completed a thorough assessment and testing the 1st time, my complications may never have progressed to such lengths and my years of pain may have been avoidable. But I will never know. My conversation with my doctor reminded me that although I am safe from my 1st surgeon, I don't recall the names of those 3 residents and am at risk of accidently becoming one of their patients without properly protecting myself by being able to recognize their names. So I am requesting my medical records so that I may discover their names and avoid them for my life.

Just as these individuals have allowed and created lifelong anguish and mistrust in medical providers for me, there are a few medical providers whom I deeply trust and respect. I do not easily trust medical providers and this last year I realized that this mistrust and apprehension about new providers has generalized even to dentists. I trust one hospital and a handful of doctors, these are my medical angels.

My GI doctor, who I have known since I was 8, means the world to me. I feel safe under her guidance, she is compassionate, understanding, and extremely knowledgeable and in fact is one of the top pediatric GI doctors in the state. She was the only female in her medical program and she is near 90 now. In the summers she invites me over for swimming and figs from her trees. She is protective over me and goes to great lengths to protect my physical and mental safety, which is why she continues to follow me when I am almost 30. She has promised if and when I am forced to become followed by another GI, she will thoroughly brief the my new doctor about my history, present, medical and psychological needs. Whenever she requested for another doctor to perform testing, she has physically been in the room to oversee the testing and provide me peace of mind as I know that if she is present, she will oversee my care and protect me from harm. She is very dear to my heart and I trust no other doctor like I trust her. There really aren't enough words to describe how much she means to me, how much I respect and trust her, and all the care she provides me.

My 2nd surgeon was an incredible surgeon. My only sadness is that he is a pediatric only surgeon and he won't be able to perform any future surgeries I should need. He has phenomenal medical skills and outstanding compassion for his patients. He understood my fears, my mistrust, my fragile psyche and he gave me hope and support. He was patient with me and also took great lengths to ensure my comfort. He was the surgeon that performed my last 2 surgeries. After my last surgery, I asked him if he could "knock me out" by ordering me Finnegan to be given when my NG tube was to be removed. I had undergone such pain and misery that year from extensive, unceasing medical tests and procedures, hospitalizations, symptoms and near death. I was on the edge, mentally exhausted from it all and not having to endure the pain of the NG tube removal would help to ease my mind and my body. He told me "I'll order you something better". And he did. The only problem was, the nurses didn't give me the medicine. I told them I needed the medicine my surgeon ordered, the nurses told me that there wasn't anything ordered to "knock me out" and I either could have the tube pulled then or wait until they could get an order, which they said would take several hours. I was so angry. I hated my surgeon in that moment. The words that he didn't order me any such medicine burned in my ears, stabbed my heart, and wrenched my soul. I trusted this surgeon for almost 2 years, I believed him when he told me something. He betrayed me, knowing the betrayals I suffered from my 1st surgeon and his crackerjack team. How dare he! I agreed to let the nurses remove my NG tube without any medicine. As every time in the past, the NG tube made my esophagus, throat, and nose raw with pain and I cried and screamed from it all. Once the tube was removed, I thrashed in my hospital bed for hours. I was overcome with anger, hate, pain and I couldn't stop the screaming, the words I yelled at my surgeon, willing him to hear me, the uncontrolled sobbing that went on for hours until I finally collapsed from pure exhaustion and a pained body from it all. My mind could not respond any other way. My mother tried to comfort me. I couldn't be comforted, the man I thought was my hero surgeon had lied to me and betrayed me. Oh the psychological harm it had done to me. He LIED to me!
The next morning my surgeon visited me. I told him I hated him, he betrayed my trust, he knew all I had endured as a child. He listened to my rant and didn't say anything until I was done. He apologized to me. He explained that he had ordered the medicine but the hospital pharmacy didn't carry the medicine and he wasn't informed so until after the NG tube was removed and the nurses told him how distraught I had been. He explained that if he had known the pharmacy wouldn't fill the medicine he ordered, he would have ordered something else. He explained this quietly and kindly, not a hint of defensiveness in his tone or body. He didn't lie to me, he had tried, he cared. My heart sank with this new information, I had genuinely hated him without real cause. Instantly my mind was began to repair itself from the previous day's anguish and became stronger again knowing that I could still trust this surgeon, I hadn't been betrayed.
There aren't many doctors that will listen to a patient release their emotions and kindly apologize and explain the mishap without defensiveness or blaming the patient but instead continue to provide compassionate understanding.

My anaesthesiologist in high school was also so kindhearted. My GI doctor knew how safe I felt this this anaesthesiologist that whenever I had to have a medical procedure or surgery that required anaesthesia, she scheduled my procedures for when he could care for me. To this day, she offers to do the same for any procedures I have to undergo. Another example of just how amazing my GI doctor is! My anaesthesiologist is a very funny man and uses his humor to help relax his patients, distract them from the procedure they're about to undergo and carefully monitors them. He knew about my difficulty with local sedation, that I've become immune to locals and require general anaesthesia and my fear of waking up again during any procedure. He provided reassurance that he would not let me wake up during a procedure and made certain I was comfortable as I could. I am forever grateful for his care, as every little bit helps to reduce the agony that medical issues brings.

My gynecologist is another medical angel. I didn't like my previous gynecologist, I never felt comfortable with her and questioned her competence. Early on I knew I didn't want to have any children myself, I knew I wasn't meant to become pregnant or give birth and with good reason. There are so many risks for someone with such abdominal trauma to undergo pregnancy and childbirth. The intestine can wrap around the uterus, the intestine can rupture, can't take the medications that are so necessary for daily functioning just to name a few. I knew in my heart of hearts that if I were to become pregnant, I would most likely die and if I didn't, I would wish I had. Mentally and physically, I wouldn't be able to take the pain and the threat of such risks. I definitely wouldn't be able to take it if the threats became reality. After my last surgery, I decided that if I ever had to have surgery again that I would opt to have my tubes tied at the same time. I wouldn't choose to have the surgery by itself because I had already gone through enough surgeries and didn't want to go through another one. But if I was having another surgery anyway, I might as well have this one at the same time. In graduate school I found out about the Essure Procedure and this is what I had been waiting for all my life. You can read more about it at the website, but basically it is an outpatient procedure and tiny metal coils are inserted into each fallopian tube. Anaesthesia isn't required although you are given a light sedative, a relaxer and pain pill as the cervix has to be opened. After about 6 months, scar tissue builds around the coils to permanently block the fallopian tubes thereby preventing pregnancy forever! I researched the procedure, the results, the risks and felt confident this was a great option for me. I searched for a local Essure trained doctor. I had little hope that there actually would be a doctor in my area but there was! I called that day to schedule my appointment. I was only 23 and knew that some doctors would refuse to perform a sterilization procedure for someone so young who hadn't even had any children yet. Realizing the potential obstacle, I had my speech prepared, more like my plea, on why I wanted the essure procedure and why the doctor should perform it for me. When I arrived at the office, I felt like I had chosen the doctor well. She voiced her concerns about my possible regret and I pled my case. She was very understanding and realizing my commitment to not becoming pregnant, agreed to perform the procedure for me.
I met my now husband a month and a half before my sterilization procedure. After 2-3 weeks of dating, I told him what I was about to embark on and I told him that he needed to decide if he wanted to stay or if he needed to exit because I wasn't changing my mind for anyone or anything. Without hesitation, he told me he was staying and would support me in whatever health decisions I made for myself. This said a lot to me about my now husband's respect for others and respect for women's healthcare.
My gynecologist and her clinical staff were very understanding about my medical history, my anxiety and fear of any pain and the trauma I've endured and were thus extremely supportive and eager to provide me reassurance and to reduce my anxiety. The procedure was very painful, although it wasn't the worst pain I had ever experienced and I was determined to make it through to the end of the procedure.
I thought I would have fertility issues even if I did want to become pregnant because I've had health complications that increase infertility, all the adhesions in my abdomen and pelvis, fluid in my fallopian tubes (my medical team never could find out what was going on here), I had a fistula on my tube or something similar. My gut instinct was right, one of my fallopian tubes was blocked shut!
After my procedure, I decided to become a permanent patient of this gynecologist and I've never regretted it. She understands the GI issues I have and how they relate to my reproductive system and supports my healthcare choices. I actually look forward to my annual exam with her as my doctor!

Even though there are medical providers whose incompetence have permanently scarred my psyche and risked my life, there are also providers who have my best interest at heart and make every effort to protect my health and safety. It is because of these medical angels that I'm doing as well as I am today.
What are your experiences with medical angels and demons?