Complicated Symptoms

I'm not sure if it's just my perception of my health or if it's actual reality but I view my health symptoms as a product of complications that originally started with FAP, not as symptoms of FAP. In the beginning, I explained what FAP is and my experience in general of FAP. Allow me to clarify how I classify the symptoms from FAP and complications. The cancerous polyps and the resulting surgeries were because of FAP, but the complications from surgeries were not because of FAP. I don't view my bowel issues as a problem because of my FAP but instead it's a result of complications from surgeries that I initially had because of FAP. If I had not had surgery complications, I very likely wouldn't have the SBS. So although it is a distant effect of FAP, it is not directly caused by FAP.

Because of this distinction I become ever so slightly vexed when I'm asked if such and such issue is because of my FAP. I suppose you could technically consider symptoms as such, but I don't and I'm not going to blame things on FAP disease that aren't directly caused by it. Doing so is like milking the disease and falsifying information. FAP sucks and is a horrible disease, but by itself it isn't necessarily such a god awful disease. Yea you're guaranteed to develop cancer at some point, but caught early enough is easily treated and likely will only require surgery as treatment option. I view desmoid tumors, although benign, as the 2nd worst symptom or effect of FAP because of the effects on other body parts and organs, especially if the tumors are inoperable.
I don't know why I'm touchy about this, but for whatever reason it irritates me and I prefer the distinction to be acknowledged. To me, it's a simple distinction that doesn't need to be muddied or misidentified. That doesn't help matters, it doesn't help the public understanding of FAP and it doesn't help the individual with FAP. FAP isn't a well known disease, it's a rare disease and the majority of people have never heard of it. Misguided information won't raise awareness, just myths.

Awareness is important for public knowledge, higher rates of screenings to detect cancer early, and increased funding for research of the genetics, treatments and cures. There isn't a whole lot known about FAP in comparison to non-rare diseases and there isn't very much research on FAP. If we want this to change, we're going to have to work together to increase educated awareness and provide valid reasoning for research.

Death Warp

In an earlier post I wrote about how chronic life threatening illness warps your mind and I started thinking about how else my mind has been warped over the years. It brought me back to an earlier realization that my warped mind has re-warped itself in the aspect of accepting death since I've married. Prior to marriage, I would have been fine dying any day, any time and wouldn't have thought much about it. I had decided if I were to develop cancer again that I wouldn't undergo any treatment again. This may sound as though I had given up on life or was extremely depressed. I had just accepted the inevitable that I cheated years before.

But something  happened, I found my soul mate and yet again some of my life views changed, contrary to what my life views had been for so many years. Life with my husband has provided new hope and new dreams for the future which in turn has led to altered life views. Although I am still adamant about being the first to die within my immediate family, I am not as ready to die as quickly as before. I believe if I were diagnosed with cancer again that I'd agree to undergo treatment, although I may not complete the treatment depending on the quality of life. I still don't believe I'd agree to aggressive treatment for any disease until the absolute end. At some point, I believe I'd defer to palliative care once the quality of life began to become unbearable. I acknowledge that of course, one can't truly know what one would decide to do until faced with such decisions. Especially as times have changed and new hope is given.
My views have changed even to the point that if I were to outlive my husband (absolutely fearful of this occurring) and we have children that I would try to continue life for our children, who hopefully would be adult children at that point if such a horrific tragedy should occur.
Even though I have new hope and dreams for our future, such life view alterations instills more fear as I may decide to fight off death longer than previously believed. The increased fear resides in the ever flowing fear of not being the first to die in my immediate family. I do not want to outlive my parents, and especially my husband. Life has been very hard for me and is quite terrifying to me. These 3 individuals are my rock, my salvation and the thought of losing even one of these most dear persons floods my heart and soul with horrified pain.
To further complicate such life decisions, I am now an adult with the decision making ability over my own life whereas as a child, when my health was at its worst, my parents made these decisions for me and I was not to question or object to their decisions or the treatments or procedures. I have more strength in my own decisions now and perhaps as a measure of rebellion or a statement of mere exhaustion, am defiant to recommended procedures or tests and if needed, may even be defiant to treatments.
Even with these life changes, I hope for the simple solutions so that I will never have to face such decisions and I will go peacefully in my sleep one night before the rest in my immediate family.
As always, we are left with only hopes in the end. Whatever our choices, some things in life are simply out of our control and we must take the best course we believe through life and hope for the best.

Happy WOD!

Today is World Ostomy Day to raise awareness of ostomies, bladder and bowel disorders or dysfunction. So happy World Ostomy Day!

There are so many new groups that have come together since I was a child. When I was 9, I knew 2 others with ostomies. My parents started taking me to the local ostomy support group to try to help me cope with all I'd gone through that year. I was the only young person and was absolutely the only child that attended the support group meetings. At age 11 I went to the youth rally and for the first time met other children with ostomies and similar health issues. It was absolutely amazing and helpful, I enjoyed being a camper until I was age 17. I attended the local support group meetings periodically until the support group was disbanded last year and attended several years of the UOAA and YODAA conferences and enjoy the UOAA discussion boards as well.

For years these were the only support resources available. Over the last couple of years various additional awareness campaigns and groups have started as social media has increased allowing for widespread information, advocacy and support with fewer obstacles. With all the access to others with similar experiences, you never know you can reach out to or who will reach out to you. These are amazing developments with powerful results. World Ostomy Day is another part of this new era of ostomy awareness and every new way to raise awareness is important, to think outside of the box is essential as the world and the way the world communicates changes.
What are some of your favorite ways to raise awareness and celebrate life?

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?

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.