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.

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.

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.

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.