Operation April 2007 Part 1

I was back working at the bank, and doing well. I only seemed to have mild symptoms caused by the disease. It was around January I began to struggle physically. I began again suffer more and more as the months past on while, continuing to work and raise my son who was now 3years old. It was now the middle of April and my symptoms were becoming severe and the pain most days was more than I could tolerate. I could keep little food down at all and found getting out of bed more and more difficult. I was placed on a immune suppressant medication called MP3 (mercaptopurine)  to help relieve and control the symptoms being experienced. 

    One evening the symptoms became so severe that I knew that I was suffering another blockage in my intestine. I called a friend Candy to take me to the hospital because, I knew was in need of help. Candy came right away and drove me to the nearest hospital and stayed with me most of that evening until I was placed in my own room. The doctors ran tests that validated that my intestine was in fact blocked, and I would need surgery. Part of me was relieved that they were going to take care of it right away instead of placing me on bowel rest as they did in 2004. I recall the day of the operation being terrified because, I knew the pain I would face when I awoke. Those of us that have experienced surgery know this well. 

    I recall waking up being an intense amount of pain more so than the prior operation. That evening I began struggling to breathe. I remember gasping for air while, I called for the nurse. I only remember fading out to the view of several white coats and nurses rushing into my room yelling and they were all moving very quickly. When I woke up again I was on a table in the x-ray room, and I began gasping for air again. The tech in the room comforted me with reminding me I was on oxygen all I had to do was breathe it would help me, and I faded out yet again. I awoke again in a dark room lying in a hospital bed and began pushing on the end of the bed with my feet to try and stretch myself because, I was still gasping for air. I must have called the nurse prior to doing this because, right at the moment a male nurse opened the door. He did not enter though, instead he said to me from the door, "When you realize you are not the only patient here in pain then I will bring you your pain medication!". I will never, ever as long as I live forget those words spoken by that nurse. As he said that he shut the door, and when he did I FREAKED OUT and immediately sat up and when I did all of my stitches busted open and brown liquid began to literally spew from my abdomen all over me and the bed. I could breathe!! I began frantically screaming for help. It was a little woman nurse that came running into the room first. I will never forget the look on her face. She was horrified at what she saw and began yelling for the other nurse. I recall both nurses grabbing me from the bed and placing me in the shower to wash me off. I looked down and saw a steady stream of brown liquid pouring from the surgical wound in my abdomen and I began sobbing hysterically. The last thing I can remember is being wrapped around my stomach like a mummy and placed back into bed. 

    It was not until the next morning that I awoke to my life being changed forever. 

Confession Time - Manda's Thoughts

 I want to take the opportunity to place my thoughts in between the posts of me sharing my story. I hope they help in understanding who I am and the purpose behind me sharing my struggle with the world. 

    This is hard for me to write about all of these operations and medical procedures that I have gone through. I have not opened up about many of the things that I lived through because, I truly believed that talking about it would change nothing. I was wrong and I finally see that now. There are so many out there that are facing adversity in their lives and choose to keep it bottled inside and pushed way down. They do this for fear they will face judgement from those that are in their life. Judgement for something you have ZERO control over.

I want to talk about the person who brought me to finally understanding that enough is enough and it is time to start speaking out. That what I have been through will not be for nothing at all. I refuse to carry around a heavy heart my entire life because, of others beliefs about my health challenges.  

 Seven Bridges, is one of the most beautiful souls to ever have lived in my eyes. He is a ten-year old boy from Kentucky born to Tami Charles and was her only child. In January 2019 this young boy committed suicide because, of cruelty. Cruelty from ignorance. The young boy was born with concern with his intestine. It was unable to be corrected after 26 operations. The young boy knew nothing but, life with an ostomy bag. He did not ask to be different, nor did he need to be punished by others for it. The children at school belittled and teased him daily. He spent his life fighting to be accepted his whole life by others, just as I have. Seven did not have the heart to be cruel in return so instead he just prayed for the other children, and kept going on with his life the best he knew how to. I unlike Seven had the opportunity to fall in love, get married, and have a child. I know how it feels to be accepted by society because, you are what we referred to as, "normal". Seven was ripped of all those opportunities in life because, of other people's opinions of what he was in their eyes. How is this right? Where were the adults? The truth of it is, they were all there watching, knowing, and doing nothing about it at all. We all preach about "education" and how important it is in our world.  Why were these children and adults not being educated about Seven's condition. Why were special accommodations not made for his situation? 

There are many nights I lye awake thinking that if I had just spoken up sooner, Seven and those like him and I might still be here living. Just like they were meant to all along. Imagine for just a moment that you face a physical disability that is completely outside of anything you are able to control. Would it hurt to be rejected for that difference? How about years of ridicules'? Would you enjoy it? How would you handle it? We spend so much of our lives busy judging those around us, instead of trying to help. 

I know we have all said or heard at one time or another that we are our own worst critic. No one is harder on us, than ourselves. Now imagine spending years upon years being beat up by those we must interact amongst. Then you go away to be alone only to attack yourself further internally. Would you want to quit?

I know I have not gotten to my ostomy procedure yet although, I will. It is the most difficult of operations for me to discuss because, it caused the most emotional, physical, and mental damage. 

I want nothing more than to "help" because, compassion is something each of yearn for in times of struggle. Yet. when we see other struggling we are so hesitant to give the compassion that we so crave. It has to stop.

Scarred Beautifully - Operation 2004

    In the hospital bed I laid there that night alone in my room as I did most nights over the past several months of being in and out of the hospital. I had been to the hospital so often that many of the nurses on the fifth floor of that hospital knew me, or had heard of someone taking care of me. It was this night in particular that I recall calling my brother. My brother when we were growing up always made things okay in my world with the things that he would say to comfort me. As usual bless my brother's heart he tried so hard to comfort me but, I could hear in his voice that he too was concerned about me and the difficulties I was facing with my health and falling short for words. 

    I believe it was a day and night that passed before, I saw my wonderful brother's face walk into my room. He took the time to listen to my understanding of what the surgeons and gastrointestinal doctors were telling me as to why they could not operate. (This is the first time that I learned how to identify when it is time to get a different opinion. I was young and never realized that it was ever an option. I saw it that those were my doctors and trusted that they were doing what was in my best interest) It was then that my brother demanded to speak to both doctors to find why they were both allowing  a young girl who should be enjoying her life with her newborn instead to be spending it alone in a hospital bed while, her mother-in law tended to her son. At this point he wanted to hear their justification for not operating when my quality of life was so poor. 

    I can recall hearing very loud voices coming from the hallway where the men were speaking for several minutes. It was only my brother who entered back into the room to speak to me. My brother discovered the concern was not falling with the stomach doctor but, instead on that of the surgeon. The two were not in agreement and therefore, the gastrointestinal doctor was forced to think outside the box when it came to the symptoms my disease was presenting. Once I understood what was going on he informed that he demanded a different surgeon immediately with a new perspective on my case not tomorrow but, today. If that surgeon came back with the same answer as the first then we will accept that surgery is no option.

    It was several hours my brother sat in my room with me, before a nice man in a long white coat entered the room. The man introduced himself as the new surgeon requested to review my chart. The two men once again left the room but, this time there were no loud voices just silence. It was not long before my brother calmly entered back into the room. The two surgeons did not agree on everything. They did agree that yes, I was young and when one operates on a Crohn's patient they find that it leads into additional operations in the future often, caused by scar tissue. It was another way to say it was not a cure all for what was happening to me. The surgeon did not agree that the quality of life I was expected to continue living was acceptable either. Therefore, they came to the agreement that if my intestine did not open within the next 72hours with the medications and bowel rest then he agreed he would operate. However, "if" it did resolve (open) then I would be sent home on liquids only, without any TPN. If I returned to the hospital with another blockage within seven-days of leaving the hospital he agreed he would then operate removing the diseased portion of bowel causing the blockages.

    I was in the hospital a little over a full day when my blockage resolved itself. I was placed on a liquid diet under hospital observation for twenty-four hours before I could go home. Three-days after being released I found myself once again unable to keep any liquids down and in the most agonizing pain possible. Back to the hospital I went but, I could remember feeling hopeful because; I knew now finally they would operate. Within twenty-four hours of arriving to the emergency room I was being taken into the operating room for what would be first operation. 

The operation turned out to be successful and with maintaining the upkeep on my Crohn's medication for around two-years I had my quality of life back .  

Scarred Beautifully, LLC. - The Beginning

The story of how Scarred Beautifully began is a story I truly hope one will find themselves wanting to share with others who have faced adversity caused by Chronic Illness.

   The best way to begin is to start with who I was and I say was because, throughout the course of seventeen-years I have found that I have changed many times. I was born to my parents and as Amanda Nichole Bell, but am now known as "Manda York". I was newly married with a brand new baby boy that was born in August 2003 when I diagnosed with a gastrointestinal disease called Crohn's Disease. It was not too commonly known back in October 2003, and many of the treatments to relieve the symptoms were relatively new. This is where my battle with chronic illness began to drastically alter my life in a way I never dreamed possible.

(https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304)

    For months prior to and after my diagnosis I coped with the symptoms of the disease, and suffered from painful blockages in my small intestine. The blockages required constant hospitalization requiring an NG tube (https://www.verywellhealth.com/nasogastric-ng-tube-1943087), and intravenous medication since, eating was not an option. Over several months the blockages began to not respond to medications the doctors were using to open the bowel. Therefore, another approach was tried by doctors so surgery could be avoided at all cost. 

    I was only twenty-four years old, and the medical staff believed I was far too young to begin operating on. Therefore, I was placed with a PICC line (https://www.mayoclinic.org/tests-procedures/picc-line/about/pac-20468748) so that I could live on a feeding bag otherwise known as TPN (https://www.mayoclinic.org/tests-procedures/total-parenteral-nutrition/about/pac-20385081), and placed on a diet of nothing but liquids. This was done so that the intestine did not have to process any food, and is referred to as "bowel rest". I remember carrying a backpack that contained my nutrition for just shy of three months while, eating a diet of soups and popsicles. People in the grocery store stared at me oddly because, my cart was filled with nothing except liquid products. 

    Being on a liquid diet and my nutrition begin supplied intravenously through the PICC line I began to gain weight negatively affecting how I felt about my physical appearance. This was due, to the massive amounts of medications I was placed on with Prednisone (steroids') be the highest dosed medication. Depression became a part of my everyday existence as I was exhausted from the physical, mental, and emotional pain. I can recall feeling defeated, alone, and scared and to help I was placed on mood stabilizers and anti-depressants. All I could think was, "great more medicine". :(

    Although, on complete bowel rest the new medical regimen stopped working and I began to suffer blockages again. The disease was creating excessive inflammation in the intestinal tract causing damage that was unable to be stopped. The regimen that had worked for the past two-months was no longer helping and I was re-hospitalized with the topic of surgery being avoided. I was devastated.