Tortured Memories

I keep thinking back to that "year of torture" and I realized I've never actually said what really went on during that year, I've briefly glossed over it when I first started this blog but nowhere else, whereas I have told about my year of constant crisis in high school.

I decided I will try to retell that year and the few memories I have. Mind you, this started when I was 9 and the year ended when I was 10 and my mind has tried it's best to protect itself through repression resulting in a haze of memories that are pieced together like a mismatched jigsaw puzzle.

And so I shall begin.
I don't actually remember the conversation my parents had with me about having my 1st surgery, I just remember that I knew it was coming and that I had to do as my doctors and my parents instructed.
I don't really recall any feelings of fear or anxiousness during this time. The plan was to have total colectomy and jpouch and after healing have the take down surgery.

One thing I will never forget though is when I forgot I was fasting for the surgery and I ate potato chips. I was scared at that point - debating if I should tell my mother or not, knowing that if I didn't that it could mean something bad with the surgery, fearing what would happen though if I did tell. Being the follow the rules child I was, I told my mother. I don't know if that really was the best choice or not because I got a severe punishment that day or the following day. A team of nurses came out to our house and repeatedly attempted to insert an NG tube through my nose, down my throat to insert a fast acting laxative so that the surgery would not require postponing.
This incident in itself was pure torture. I remember being told and forced to sit up while I screamed in agony, repeated attempts to insert this tube that would not cooperate. After countless tries, I was finally told to lie down and my parents helped keep me still and the tube finally cooperated. A metal coil that was in the tube was pulled out, feeling every centimeter of that coil painfully hitting the walls of my nose and esophagus as it was yanked out and liquid began to rush through the tube into my stomach to work it's magic through my then fully intact intestines.

This was my first experience I remember.
I don't remember the endoscopies and colonscopies before this that found my pre-ulcerous condition from stress and anxiety and the FAP polyps nor the ones that later monitored my FAP polyps that led to the final decision for a total colectomy. I remember seeing several PCP's prior to all this as my parents needed a referral for me to see a GI specialist as I was having constant abdominal pains. My parents were repeatedly told by PCP's that I was merely a "whiny child". Finally, a PCP listened and I saw my GI specialist, who is one of my saviors. I remember I started seeing my GI specialist in 3rd grade and end of 4th grade I was having surgery and this was it's horrible beginning.

I had my surgery and my stoma was on the left side, in spite of my parents voicing concern to the surgeon prior to surgery of the placement of my stoma. Everyone else in my family with an ostomy has their stoma on the right side and the different location of my stoma alarmed my parents. My parents' concerns were dismissed  by the surgeon, stating that the way my organs were arranged the left stoma was preferable and there wouldn't be too much lax in my intestine.

I will not bore you with details of each hospitalization or surgery as I don't recall most of them anyway!
What I do remember is that sometime during my recovery after my 1st surgery, that the area of my incision became infected and I had to return to the ER and a large needle stabbing me in the thigh with morphine immediately before my abdomen was cut open, the new incision was rinsed and packed with gauze. I really don't know why I was given morphine for this because it was not as though any time was allowed for the morphine to take effect. I screamed bloody murder while I was being cut open, a solution sprayed into the incision, fingers roughly gracing the inside of my incision and pieces of gauze being jammed into my open wound. During my agonizing screams, I remember hearing my mother's voice telling me to quit screaming because I was scaring the other children in the ER. I began to hate that hospital at this point.
Side note: This sounds extremely callous I realize, but please don't get the wrong impression of my mother. She is very caring and lovingly tends to me whenever I am in need. I am forever grateful to both of my parents and love them dearly.

Before too long I was back at the ER again for severe abdominal pains, I did nothing but cry and couldn't sleep. My parents rushed me to the ER during the night what felt like an insanely high speed to get me there as quickly as possible. An x-ray was done and nothing found. I was dismissed and my parents were told that I was just a "whiny child" and to take me home as nothing was wrong with me.
My parents took me home, feeling helpless as the pain medicine did very little for my pain. The next day my parents took me back to the ER as I had no improvement in pain and symptoms.
Fortunately this time, someone in the ER had more sense than those working the night before and more testing than a simple x-ray was completed. These additional tests found that my intestine was too lax and had looped around itself and my other organs causing some of my small bowel to have already died and risking the other organs in its' grasp. Full blown emergency surgery was done to remove the dead intestine and dead jpouch, release my organs and my stoma was moved from the left side to the right side, as my parents had originally requested. Are you seeing a trend with this surgeon yet?

I continued to have surgeries from the complications until finally the ostomy was deemed permanent due to inability to reattach my ends. I recall very little about these other surgeries during that year. I'm not even sure the timeline of the remainder of my fleeting memories. The only memories I really remember are outlined below and all occurred during those hospitalizations:

• That first time I had to empty my ostomy myself and being so disgusted, in spite of seeing and helping with the changes of ostomies for years. I could barely bring myself to empty my own until my father scolded me and told me I had to do this myself.
• The severe back pain I started to have that year requiring my whole spine to be lined up with ice packs. The trauma to my back from repeated abdominal surgeries still haunts me at times but was greatly reduced after physical therapy in high school
• Dying of thirst from not being allowed to eat or drink for such long periods of the year that one night I decided to break the rules and started to drink that ice cold water from inside my powder lined ice pack until a nurse walking by my room caught me and threatened to take away all my ice packs. I never drank or ate again when I was not supposed to.
• The best friend I made during one stay, she had back surgery from a rodeo accident. We stayed friends into middle school before finally losing touch.
• Meeting Reba McEntire, some of the actors from Mighty Ducks, and some other celebrities. I had my picture taken with Reba for a chance to be featured on a billboard. I was dreadful to her and the other celebrity guests, I felt horrible, looked awful and all I could think at the time was "don't exploit me for your own purposes and let me rest".
• The one nurse I liked, named Chad, who invited me and my parents to his wedding. I was even able to attend.
• The mother of one of my childhood best friends and my friend's sisters. The mother tried to steal cookies from my cookie bouquet during a period when I was unable to eat or drink. My aunt gave her a tongue lashing and my friend's mother quickly recoiled in what I hope was shame and not resentment toward someone standing up to her. My best friend's sisters playing in my wheelchair, I too weak to care until they repeatedly kept hitting my bed causing shocks of pain to run through my body.

Outside of the hospital I remember being forced to go on walks around the house to regain strength and foolishly, painfully somehow doing a flip over a bar on my playground, just because I hadn't gotten to in such a long time. I was lucky I didn't rip open my incision or fall from the pain that foolishness caused. I had frequent, extreme nosebleeds from the multitude of NG tubes that irritated my nostrils raw. The blood literally pouring from my nose unexpectedly filling containers until finally, my skin would start to clot off the outpoor of blood. The damage would last for over a year before fully healing. My mother home schooled me for my 5th grade year due to constant hospitalizations and never fully recovering my health until 6th grade, when I was still underweight from malnutrition yet healthy enough for activity. During 6th grade a consulting specialist  to my GI specialist attempted to persuade my doctor to give me a feeding tube because of my malnutrition and being significantly underweight, diagnosing me as anorexic. My doctor quickly corrected him in his error. She realized I was not underweight out of choice but out of accustomed behaviors to the extended periods of time without food from the hospitalizations and surgeries. It was this year that I was, however, placed on a high fat diet with sole mission of gaining weight.

And so a new chapter of my life started in 6th grade - it too would be a painful one as half way through the school year I became bullied by all I knew except for 2 classmates, that stood by me. I was determined to make a fresh start the next year. And so I did, and it was a turning point in my life but I didn't escape the anger and resentment I felt for all those bullying students and it would lead to danger within myself that would later implode in highschool.

And so too frequently is the tortured life and soul of one with chronic, invisible illness, so rarely understood by others that are not part of the same club. Sometimes it is a good thing to not be able to remember the past. Fortunately, the memories we are unable to erase allow us to bond more deeply with others who have similar experiences and memories. With the help of one another, our broken souls can begin to mend.

Haunted

There are some physical sensations and memories that will never be erased until the mind fails in it's own ability to be mindful of the past and the body begins to become numb to itself.

Such haunting memories and sensations make forgetting the pain we've suffered impossible and refresh our terrors of the past, and for too many of us - the PTSD that battles for constant hold over our psyches.

In high school when I started counseling for the 1st time, I was diagnosed with PTSD, for years I had been experiencing all the classic symptoms and continued for years after beginning counseling.
Besides the obvious experiences that trigger such symptoms, I recall random times and memories that to this day haunt me. One night of the night terrors left me mentally and emotionally fragile, my parents recognizing the pain inflicted allowed me the privilege to remain at home that next day from school that I could recover myself.  I recall that night so vividly that I am still terrified I'll experience such a vivid night terror again. My parents have always been and continue to be understanding of my symptoms, fears, and anxiety and have been a strong support to soothe me back to safety. 

There are still times that I have the physical sensation that I still have one of my 2 stoma sites.

Side Note: My first ostomy placement on my left side caused my intestine to twist and make a knot over my other organs that resulted in my first near death experiences. Once my surgeon and the children's hospital finally believed me that I was not just being a "whiny child" and something was seriously wrong, that site was taken down and moved to my right side.

The sensations are so strong that I am compelled to touch my stoma sites to ensure that I do not indeed, still have an existing stoma. It is one of the oddest physical feelings and I can't even describe it other than what it feels like to have a stoma. Only those with a stoma can understand the sensation.
Other times I wake up randomly with the sensation of still having an ostomy and the innate behavior of checking to see when I will need to empty the pouch, positioning my body so that I'm not lying on the pouch but also not lying too far from the bed causing a strain on the pouch as it would fall from my body pulling against the seal made, thoughtlessly mimicking the once natural behaviors of emptying the pouch, the burning sensation of raw skin around the stoma, and instinctively jumping out of bed to "empty" the pouch before it becomes so full and leaks.

I don't know if one ever truly stops having PTSD or if symptoms simply become dormant after a better sense of resolution is achieved through counseling. I rarely have PTSD symptoms anymore, but I also am not faced with health crises as frequently as in the past. During medical tests, even as simple as a CT Scan with Contrast, I notice symptoms starting to creep in on me again.

Instead I am more frequently haunted by these physical sensations and memories that lurk behind the shadows of time, reminding me that although now safe, times can change at any moment - never to let me forget.

This Too Shall Pass...

It's absolutely amazingly mind-boggling the difference one day, or even half a day, can make in regards to health. For 4 consective days, I walked for 45 minutes or more. This has to be a record for me for consistent walking especially considering that on the 4th day, within 10 minutes my abdominal muscles felt overworked and strained as if I had tried to do a sit up or push up and half way through the walk my leg felt as though it was falling off by the knee. I am limited in my exercise as I can't strain my abdominal muscles without pain and feeling as though my incision (although healed for 10 years) is going to rip open, physical activity stimulates my SBS, I'm not supposed to lift more than about 20 pounds, and my knees feel arthritic. So exercise is a hard deal for me and this day it was showing.
The evening only worsened from there. My SBS hadn't been normal that day, it was rather absent which causes other problems and my body decided to rectify this until the next morning. I was up running for the restroom every 10 minutes, I couldn't try to prolong or I'd end up in a mess of myself. The evening's flare up left my skin inflamed and raw, and as my doctor has described my skin and my intestine: "it looks like raw hamburger". Lovely image huh? To this day I picture my skin and my insides tearing like raw hamburger!
I've discovered though when flare ups occur during the night, I can intervene and start to slow the process by lying with two pillows stacked upon each other under my thighs. I suppose it makes it less of a straight shot thereby forcing a slower progression. After a few hours into the night, I finally was able to sleep and the next morning I felt great. All within less of a 24 hour day. Exhausting!

My husband is very attentive to me when I'm feeling ill and he's become accustomed to this roller coaster of symptoms and unexpected starts and stops.
It's difficult for us to adjust to such unpredictability, particularly when we are new to such health issues and I think it can even be harder in some ways for those around us. Others feel helpless, not understanding what is happening and not knowing how to help us. At least we have more of the medical knowledge after years of our bodies being violated by health symptoms, medical tests and surgeries and we become to know what to expect with a flare up. All my husband sees is a woman reduced to tears at times, clutching her stomach, not able to walk or even stand straight up for long, running to the restroom every few minutes. He can only understand what I tell him about my symptoms or what I'm experiencing, the rest is left to his imagination. And all he wants to do is help me get off the roller coaster.

Eventually the roller coaster takes a break and we're left to enjoy some time and our lives again.
From experience, I know that the ride doesn't always seem to have an end in sight and a spiral of pain and despair is easy to begin. And quite honestly, during such trying times, I find phrases such as "this too shall pass", "nothing lasts forever", "this is only a moment in time" extremely vexing and almost insensitive to what is being experienced. It's hard to look for the light at the end of the tunnel when health issues are prolonged for years without much relief and we begin to worry it will never change. In these moments of despair, someone telling me that it'll get better, is offensive and even patronizing because it wasn't getting better and I felt no hope for it to ever get better.

Since those times, I have learned some valuable lessons though. Perhaps it isn't about reminding ourselves that "this too shall pass" but instead reminding ourselves that while we serve our painful time that there are precautionary health steps that we can take that although may not make us better, will help us so that we are not worse.
For example, during my 2nd period of torture, when I had uncontrolled SBS with bowel movements of 1 liter or more and was vomiting multiple times each day. I couldn't keep weight on my body, I was severely malnourished and at risk of a heart attack, brain seizure, and/or death every day from the electrolyte imbalance. I wasn't at a point that I could do anything to make me feel better. But what I could do was follow my doctor's recommendations religiously - I had to eat and take my medications without fail, no matter what. I didn't feel better by doing these things but I helped to combat the war in my body so I didn't feel worse with worse issues.
The fact is, it can always get worse and we need to take steps to prevent it getting worse at the very least. Eventually the roller coaster ends, it can't go on forever. Until a break comes, we must remember to hold on for our lives and do what we can to make it through.

Warped, Skewed, Jacked Up...Whatever

Chronic illness and near death experiences have a tendency of messing with your mind, self-image, and philosophy to the point that "healthy" individuals don't understand our line of thinking, humor, and philosophies very well.

For instance, I prefer my short bowel syndrome to only having 1-3 bowel movements a day (which would be constipation for me and is extremely painful at times) or perhaps my daily goal to not each anything for as long as I can so that my stomach doesn't become upset.
I don't think any healthy person understands how one can come to such a conclusion, and at times I'm not even sure if there's even another living person that understands my perspective just because I have yet to meet or talk to someone with the same daily issues I have.

My philosophy about life and death is very warped from my health experiences. I've been surrounded by death since I was an infant and so it has become part of my life. I look forward to the day I die and I have done so since I was 10 years old because I've experienced the peacefulness that death provides. I am saddened each time I lose someone but I remember that they are now experiencing the same peace I have longed to have again and so it helps me cope. I am absolutely terrified of outliving my support system - my parents and my spouse and the mere thought of it is extremely anxiety provoking and heart breaking for me. In college my mother and I traveled overseas and I told her it would be awesome if our plane crashed into our house and killed myself, her and my father at the same time instantaneously so that we wouldn't have to live without each other. She didn't like that statement, but there's how jacked up chronic illness can make your life philosophy.

Even our humor becomes twisted and is best understood by others in the same toilet bowl as the rest of us. Other than those working in the medical field, I don't know another group of people that can make jokes about and find something as humorous as bodily functions, disorders, and health issues.  When we toil through the same issues and become surrounded by pain and sickness, we have to find something to make us laugh or we become consumed. And at least others can laugh with us. It becomes a coping mechanism for many of us and as my grandmother said, it's better to laugh than cry.
And she'd laugh at you while you were crying and in pain!

Enjoy your warped perception of life and laugh at those that give you peculiar looks for it, because  there's a large group of us thinking the exact same thing as you and you just beat us to saying it outloud.
To those healthy ones, take a swim in our community toilet bowel and you'll start to become twisted too.

P.S.  I recently had my follow up appointment after my B-12 experiment leaving my B-12 at 234 or so. During the two months waiting for my follow up appointment, I was successful on having 3 rounds of B-12 shots. A round for me is 2 cc's of B-12 and I'm supposed to have two rounds each week, so I didn't very well especially since I had 2 of the 3 rounds I completed the week before my appointment! But my B-12 was 405 this time around. My experiment also landed me back in the schedule of having an appointment every 2 months instead of the 6 month I got to enjoy the time before I completed my experiment.
One day I'll learn....right???

Outlets

Having as many outlets as possible for support, shared information, and ventation is essential for surviving difficult situations such as trauma, health issues and crisis, and other life altering events.

As a child, I only knew two others with an ostomy and those were family members who had ostomies for the same reason I did - FAP. It was bad enough to have severe chronic health issues and undergo life altering, self image assaulting procedures and experiences but it was also difficult feeling alone in my experiences as I didn't know anyone else my age or anyone beyond my family members with similar experiences, period.

My parents started attending a local ostomy support group for myself and theirselves as well, I was connected with a group for children with bowel and bladder diversions and my parents gave me great strength to endure. I survived those tough years in spite of bullying by classmates that didn't know anything nor cared to try to understand what I was going through.
As a young adult, I remained active in my local support group and became more active with the national ostomy association and maintained close relationships with others with similar experiences.

Even this blog is a therapeutic outlet for me. I work in the medical field with chronically ill persons and there are times that I want to share my experiences with my clients or coworkers, but I don't. Sometimes it is frustrating when my clients make statements such as "You don't know what it's like, you're healthy" just because I don't have the same disease as them and currently am the healthiest I have been since a child. I'm not there for my own therapy, so I keep the boundaries clear. But this blog allows me to speak about my experiences in another outlet. Plus, I'd like to write a book one day and this is also helpful for documentation.

After I started being bullied in 6th grade, I was filled with an intense hate and resentment not only toward those bullying me but also in regards to my health. For a few years I tried to cope on my own without much success. Through the support of others, I was able to start accepting myself and my health. It is very hard to mentally survive such traumas without adequate outlets. Through these outlets I survived it all and have gotten to meet and form incredible relationships with many amazing people. I am a much healthier person, physically and mentally because of these outlets.

What are your outlets and how have they changed your life?