Thursday, September 27, 2012

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?

Friday, September 21, 2012

SBS SOS

Last night was awful. Actually, last night was fine it was early morning today that was awful. I had another episode into the work day. I have an episode at least twice a month on average. These episodes consist of my SBS going haywire for several hours causing me to start debating my every move, moving like a very slow hunchback or a speed walker on actual speed, and forcing myself not to scream out loud. These episodes typically are brought on by food upsetting my system, whether it's overeating or eating foods that are too rich, fatty or greasy. And sometimes I can't identify a trigger for it, all I know is my body is screaming SOS even if I'm not letting the screams out.
This time was the worst one in a while. It seemed to last longer and hurt more. I was literally running to the restroom every 5 to 10 minutes and if I tried to hold off then I risked a messy consequence. I hate when my body won't allow for a postponed restroom trip, it pretty much only occurs during my sleep and even though my husband understands and doesn't care, I'm still embarrassed when I have to run back to the bedroom for clean clothing and he wakes up to hear me rummaging through the dresser drawers in the dark or I have to wake him to ask him to bring me clothing. I hate him seeing me like that, I shouldn't be. It's beyond my control, it's not anything any person enjoys or wants and I take precautions for myself to avoid such occurrences but sometimes precautions just aren't enough. By the morning my skin was so raw and swollen the thought of having to use the restroom again pained me and while trying to get ready for work I debated every move and required my husband's help so that I wouldn't bend down or walk further than necessary. Any movement agitates my system and stimulates my SBS to occur that second instead of my 5 minutes later, so I have to stop moving and stay seated as long as possible.

Usually my episodes end before I have to get up the next day. They may last all evening and into the night but typically are over once it's time for a new day to start. Other times they may last during the day, which is when I require my wheelchair if I'm away from home. If I don't have my wheelchair then I'm a nonstop speed racer until I can get to a place I can sit or lie down, I've been known to leave friends and family struggling to keep up with me during those times. I have to though if I want to start curtailing the episode. Sitting helps the most. Lying down doesn't really help unless my legs are elevated, causing my torso to become bent and thereby forcing my intestine to have some more loops or bends to it so that it can start to slow down.
The occurrence of such episodes has in general reduced over the years. During the years following my "healing" surgery in 2001, these episodes were frequent and for about 6 months to a year, almost nonstop. My doctor asks me every few months if I want to return to have an ileostomy because of my SBS and episodes. I continue to tell her that it's not a severe enough problem for me to consider returning to having an ileostomy. Having a flare up even once or twice a week is worth it for me. I'm grateful that ostomies save lives and improve lives for so many and is an alternative option to death. I'm so grateful for the advances in ostomy care and appliances to make living with an ostomy more comfortable and convenient.
I never felt feel free or myself when I had an ostomy. I think that's because I never truly accepted the ostomy or that I was meant to have an ostomy, not permanently. When I was 10 I was told that my temporary ostomy would now be permanent as there wasn't enough rectum or tissue left to for an anastomosis anymore after all my complications. I never believed my surgeon, I also didn't trust my surgeon and hated him with all my 10 year old might, so I wasn't likely to trust his word regardless what he told me and my parents. Besides ignoring my parent's concerns and questions, ignoring my symptoms and my voiced concerns, and royally screwing up surgeries, he couldn't even remember if I had 1 or 2 kidneys, if he removed a kidney or not, and if I did have 2 kidneys if they both worked! My parents and I still don't know why the topic of my kidneys even came up during my 1st year of surgeries. He just randomly told my parents one day that I was missing a kidney, then later said he removed a kidney, and then later said I had both kidneys but one didn't work, and then later said I had 2 working kidneys and admitted he couldn't remember. WHY was this person a surgeon!? My parents though, being new to having a child with medical issues, were too naive at this time in the medical field to push the issue more. Looking back with the knowledge and understanding my parents have gained, frequently stated they should have demanded a different surgeon and sued this surgeon for malpractice and incompetence because he shouldn't have been practicing. Okay, rant over...for now. 
I held on to the belief that one day I wouldn't have an ostomy any longer, one way or another. I prayed every day, frequently, for a miracle. I pleaded to die, like so many times I should have died that one year, if I couldn't have my ostomy reversed. For 6 years this went on until one day my doctor told me that after reviewing my annual colonoscopy, it may actually be possible to have my ostomy reversed. She warned me that it was not a guarantee and may fail but I could try it if I wanted to proceed with the attempted reversal surgery. I didn't have to consider it, I immediately stated I wanted to try it. I told my parents to tell me as soon as I woke up from surgery if the reversal was a success or not. When I was returned to my hospital room, I struggled to keep my eyes open through the hazy daze of anesthesia and Demerol from the surgery, terrified that the reversal didn't work, I looked over at my parents with half opened eyes and gathered enough strength to make a thumbs up. The sign to my parents that I wanted to know now what the outcome had been.
I refuse to talk or move my head when I have an NG tube. I don't care what the circumstances are or how painful it is to remain in an uncomfortable position for days. It's just like when I have an IV - no one is going to get me to bend that arm for anything because I will take every precaution to make that one IV last my whole hospitalization. 
I was terrified that the reversal wasn't possible and finding out that it wasn't, I was afraid I would go into hysterics causing severe pain from sobbing uncontrollably and thrashing about fresh from surgery. I was afraid of the anxiety of not knowing for hours, left wondering as I drifted in and out of consciousness until the anesthesia wore off enough for a more lucid self. But I risked all that, I couldn't wait to find out, hopeful it all worked as I so whole-heartedly, fervently believed it would for years. My parents saw my gesture and told me what I longed to hear, "It worked". I relaxed and with a weak smile, closed my eyes and went back to sleep.
I've gone through too much since then and my health has made a practical 180 to what it was the year after my reversal surgery to give up on my straight pull thru and return to an ostomy. My health doesn't warrant it at this point. And so I keep my resolve to endure the SOS of my body during an SBS episode, the occasional emotional release of pent up pain and mental exhaustion and I remember that in a few hours or a day, it'll be better, my life will resume and I'll be alright. And it always is.

When your body is sending out an SOS, listen to it and follow the care recommendations for it and reach out to others to support you through the crisis. Whatever the outcome, such steps will help and you'll get through it one way or another.

Saturday, September 15, 2012

Jell-O Hell-No

Recently I was offered a protein jello shot, before I could finally form words to say no thank you, all I could think was Hell No! The jello reminded me of how much our tastes can change and vary due to chronic illness.

As a kid I liked jello. I had fun making different shapes out of jello with my mom and playing with the jiggling shapes before slurping up pieces of the gelatin and trying to chew the mess that only became broken into smaller and smaller pieces of slimy, jiggly pieces before I finally gave up and just swallowed all the tiny chunks. It may not sound like I liked it by my description, but how else do you describe jello? It's a strange concoction.
This would all change though after my 1st surgery and the time following this period. For days I could eat absolutely nothing and once I could have some type of subsistence, it was just liquids for days. And this cycle repeated itself for a year. The point came when I refused to eat the jello on my hospital food tray. I drank the broth, sucked on Popsicles and crunched on ice chips but the jello was always returned untouched no matter how hungry I was and that's how its stayed throughout my adolescence and adult years. I abhor jello now, the site only floods my mind with memories of hospitalizations and restricted diets. I've never even had a liquor jello shot!

In A Look Back I chronicled my high school experiences and graduating to different diet levels after my 7th surgery. After I graduated to chicken and rice only as my lunch and dinner meals for weeks, it took me a long time to eat chicken and rice again. The thought and smell of it turned my stomach. For weeks I could only have an egg for breakfast, although I became tired of this, it wasn't as revolting as chicken and rice became.
After about 8 years, I started to love plain chicken and rice and even crave it at times! It reminds me of those extremely restricted diet periods, but it doesn't have even near the effect as jello does on my mind, taste buds and stomach.

In high school after my 6th surgery, when I was returning to a regular diet the only foods I could tolerate were custard and bacon. My favorites tasted disgusting and smelled even worse to me. My doctor threatened me with various aversive situations until I finally relented and forced myself to eat more than just a small custard and strips of bacon for every meal. Now, I still love custard but I cringe at the thought and sight of bacon. Not because I don't like it but because every time I'm presented with bacon, I hear my doctor's voice lecturing me daily about bacon - "Bacon is only fat, barely any protein. You have to get your protein up and bacon isn't going to do anything for you. You're eating straight fat, that's all it is."
I still won't drink protein shakes or eat protein bars and will only drink bullion broth if it's my only choice.

My times without food became quite comfortable and I thought it wouldn't be a bad way to die. I didn't have pain from lack of food and perhaps that is because when I don't eat for a while, my stomach finally calms itself. As you may recall in Evils of Food, food has quite the opposite effect on my body that most people experience from food.

It's hard to get our appetite going again after being on npo or liquid only for extended periods of time. Food just isn't appealing anymore. We have to quite literally force ourselves to eat again otherwise we'll never get our appetite back. It's a huge pain to do so and can even be painful, but it's a must if we want our body to recover. Without nutrients, especially protein, our body has further reduced immunity, lower energy and strength levels. It takes a lot to get albumin back into range after illnesses and it's going to take a few months to get it where it needs to be. But it will be worth it. With appropriate albumin, our muscles repair themselves, the immune system is more capable of fighting viruses and illnesses, we become stronger and have more energy for necessary activities and our electrolytes start to become balanced again so that we aren't malnourished and at risk of the effects of too high or too low nutrients.

A few tips I have learned from my hospitalizations, severe dehydration and malnutrition are:
  • Miso soup is a great substitute for bullion broths. It has sodium and a much better taste. I also found Campbell's has a condensed Chicken Won Ton soup that is basically broth with a few pieces of won ton or chicken bits, easily removed if on a liquid only diet. 
  • For dehydration, it is best to stay away from gatorade if you're severely dehydrated. Sugar increases diarrhea which can further deplete your electrolytes. Instead, try Pedialyte or it's off brand for more electrolytes and lower sugar than sports drinks. And if you can, drink V8. It has even more electrolytes without the sugar than Pedialyte.
  • If having severe diarrhea, avoid sugar free gums and candies. The artificial sweetners can actually increase your diarrhea more than real sugar does. And if you're like me, milk acts like a natural laxative and should be avoided!
  • Sometimes if you're having regular diarrhea and not severe, extended diarrhea, eating something can help to give your stomach something to digest and will have a slight enough binding effect to get the bowel back into order.
  • Over the counter and prescription strength anti-diarrhea medications work differently for everyone. Sometimes over the counter is enough where as a prescription strength doesn't work at all. Each medicine has just a different amount of ingredients and the right combination amount can do the trick. For instance, Lonox is the generic for Lomotil. Lonox sometimes has a slight variance on the amount of ingredients than Lomotil causing Lomotil to be more effective for some whereas Lonox is enough for others. There are also anti-diarrhea shots, Sandostatin, that is a stronger strength than pills.

Sunday, September 9, 2012

Access Denied

When your life revolves bathroom habits and a toilet, obstacles to the use of a restroom is not only infuriating but also anxiety provoking for so many of us in the toilet bowl of life.
Ally's Law, the Restroom Access Act, is well known to those in our circles. If you're not aware what this law is about, check it out here or google Ally's Law or Restroom Access Act for multiple sources.
Unfortunately, this law is not a federal law yet and is only enacted in 13 states. The fact that this law is even necessary is mind boggling to me. And the requirements to show a physician's letter or a medical card and that access is only required for emergency restroom needs  in the states that do have this law is also mind boggling. The voiding of one's bowels and bladder is one of the most basic instincts and needs yet there are others who are so willing to restrict access to a restroom that they are perfectly content with a person accidentally soiling themselves right in front of the basic rights prohibiter and bystanders. The reality of some individuals requiring a law to force them to allow someone to use a restroom is beyond my understanding. Anyone should be able to have access to a restroom when needed, regardless of medical condition! This is one of the most basic needs we have and the need will be met one way or the other, it is only a choice for so long before our body demands relief.

Those without bowel and bladder disorders/dysfunction have argued that if one place denies you access then just go to another location. This is an argument by someone who clearly does not have any understanding of a bowel or bladder disorder and the never ending issues that are created by such disorders. My state does not have a Restroom Access Act. I do have a restroom access medical card that I carry with me in case I'm in a state that does have the Restroom Access Act or if I'm denied access and I want to try to gain access by presenting my card. I haven't been denied access yet but there are countless places that I have not even asked where the restroom is located due to the impression that access would be denied. In such situations, I become overwhelmed with feelings of fear of denied access, anger at the possibility of denied access, and urgency to find a restroom as quickly as possible. Fortunately, I have been able to either wait just long enough or there has been another location with a more accessible restroom that I was able to access in time. I dread the day that I am not so lucky though and I am angered that this is even an issue.
I had the same fears while overseas as I was aware that business did not have to grant access to a restroom and many public restrooms required a fee for use. Although I don't agree with charging someone to use a restroom, I prefer this to not having any access at all. Here's a link for restroom access resources that may be helpful.

Discrimination for any reason is deplorable and discrimination based on inconvenience is a pathetic excuse for such deeds. Individuals are too often discriminated against for various ignorant reasons and typically for reasons that are beyond one's control. It is a great service when a discriminated individual is able to make a positive difference in light of discrimination, such as Ally has done and continues to persevere for change. We all need to take a stand to end discrimination even if we have not personally been discriminated against. Nothing prevents someone from discrimination but at least when policies and laws are changed to address discrimination there is recourse.