Monday, December 31, 2012
In honor of the year closing and the tradition of new year's resolutions, look back on the year and consider what you would like to be different in the year to come. Many times an individual will use this time to turn over a new leaf, start or stop a behavior, or make progress on a long time goal. I'm not drilling on the same old boring notion, rather since this is a health blog, I'm going that direction.
Has the year been a good one for health or has it been full of illness? For those of us with chronic illness, we wish for every year to have good health. Let's also take the time to add on some new or continued behaviors to encourage good health. Perhaps exercising, eating healthy, reducing stress, following our doctor's recommendations better, complying with our medication regimes for a few examples.
I believe the mind and the body are connected, an issue in one area will appear in the opposite. Not only is taking steps to protect our physical health important, but so is protecting our psyche and mental health.
With chronic illness, we may not be able to change the diagnosis or even the prognosis, but we can take steps to improve the present or delay the inevitable. That can be physically and mentally. So let's do that. Let's make everyday count, actually do it instead of say it.
This can be very difficult when we don't feel well, every step toward a goal makes a difference though. Often times the more active we are, the more our energy level increases and the better we feel physically than when we are sedentary. I notice this in myself when simply working. Periods in between jobs or during breaks, my symptoms tend to flare up even to the point that it's a wonder I'm even able to function for half a day. But when I return to work, my symptoms lessen and my body regulates itself again. Simply because I'm doing something. If you're feeling depressed and it's making it difficult to interact with others and enjoy activities, remember that even the smallest effort to return to previous enjoyable activities is a step forward. Depression sucks us into it's spiral, it affects our brain's chemical balance and we simply lose interest in once enjoyable things. Our mind wants us to stop doing things, our thoughts enable that behavior. If we change one thing - our thoughts, emotions or behavior - then the rest will change. It's a cycle and it can be broken.
Set your goal, find the information and support to help make it reality. We've all been there at some point or another and we're all there in it with each other. Together, we can make changes or continue current practices and welcome the new year with high hopes and actions.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. After complications and 6 more surgeries. I had an ileostomy for 6 years and am currently living with a straight pull-thru. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP.
Sunday, December 9, 2012
The mind is very powerful and there is a lot to the mind that we don't know and may never understand.
When going through any traumatic event and experience an individual tends to dissociate from the situation in order to escape and cope with the trauma. After repeated trauma, this becomes increasingly easier to do. It's a defense mechanism and even necessary to protect the psyche from further trauma. This not only distorts memories of that time but I think it affects future memory as well, not because of a physical reason or issue but out of learned tendency our minds memory ability is altered.
I'm very detail oriented and because of it I remember a lot of details and can do so for years, but not for all things. Sometimes when I look back on my life, the past feels very surreal and is merely a haze of memories that resemble looking through someone else's mind rather than my own. I have a handful of memories of life prior to my first surgery and that is all, I can only remember about 5 friends from my childhood and barely remember any events. I don't really remember events even with my family, I just know that they were there and I have a strong connection with them from times spent together, I just don't remember what those times were really. As my cognitive development progressed from child to young adult, my memory ability greatly improved but it tapers off again once a few years have passed after an event, especially the chronogical order of events. I don't think this is normal for everyone and I don't think it's a result of age. I noticed these difficulties even during my high school and college years.
Not only does the mind allow for memories to become hazy and distorted as a matter of protection, it also allows for memories to become too realistic reminding us the past did occur. It doesn't take very much for me to recall past pains and physically feel future pain. The feeling of needles, tubes, knives, stitches, staples and all the things that accompany these instruments of healing and torture are quickly remembered and felt even years later. I physically feel the IV in my hands, the central line in my chest, the NG tube in my nose, my abdomen being pulled as muscles are used and the stitches and staples hold my body together against the force. Even now, thinking of the words to type is issuing a call to the past and those demons are clawing at the door to flood my body and mind with those memories and that pain. Before any medical procedure, test or even shot, I have to mentally prepare myself for it and the pain that is to be inflicted - that pain that is all too familiar, at times changing, but never forgotten.
The mind can trick us into false senses of security or can rip us from our safety and plunge us back into tortured memories of the past and the mind brings along our physical body for the ride. That seems to be part of the game though, it's a constant balancing act we must play to maintain sanity during an insane trauma.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. After complications and 6 more surgeries. I had an ileostomy for 6 years and am currently living with a straight pull-thru. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP.
Wednesday, December 5, 2012
I've been getting brand name Lomotil for years now for my SBS. In high school, I had to take 8 tablets a day - the max amount as well as Sandostatin injections in attempts to control the SBS. After about a year or more, my SBS started to become better controlled. I started taking the generic form of Lomotil until the formula changed and I was forced to use the brand name and have been doing so for years now. Well...I got a new order for my Lomotil and forgot to mark not to substitute for generic, and so I ended up with bottles of the generic form. What a headache trying to get this corrected! My mail order pharmacy wouldn't exchange the medication, although they offered to dispose of the medication for me...because evidently I wouldn't know how to flush a toilet. But that's besides the point, the real problem was yet to come. The mail order pharmacist said she would change the order to brand name and send me brand name medication. She did not tell me, even when asked, that actually a new order would be required and would be faxed to my doctor's office to be completed.
Unbeknownst to me, an order request was sent to my doctor's office and because I didn't know this, I wasn't able to warn or notify my doctor's office and ensure it was written correctly. Because anyone with any experience in the medical field, as a patient or employee, knows that a nurse typically writes the orders and obtains the doctor's signature and most doctors trust their nurses and will sign almost anything placed in front of them. Well...my doctor's nurse isn't the best to trust for this evidently. Because I ended up with exactly a 23 day supply for brand name medication with 5 refills instead of a 90 day supply and without any extra medication. My doctor writes my medication order for the max, in case I need more than what I normally take, so I'm usually actually able to stretch a 3 month supply to last me 6 months, thereby saving me more money. Well, this 23 day supply bottle at a time cost me twice the amount of the actual 6 month supply my doctor writes for me. See why I was livid!?
Some good did come of this outside of me being forced to spend way more money than I normally do. I tried taking the generic medication to see if it would work for me again. And to my surpise and an unknown reason, I've actually been able to not only take the generic medication, but have been able to decrease to only taking 1 or 2 pills a day! I can't believe it and it makes no sense because I require no less than 4 pills of the brand name in order to function, which is a stronger medication than the generic.
So I'm hoping that this trend will continue and I'll be able to return to the generic form and next time I need a new order, I'll be able to intercept the nurse and prevent her costing me an extreme amount of money.
The lesson? Always remain involved in your own healthcare, communicate at all times with not only your doctor but the doctor's office staff, it doesn't hurt to try changing up your medication sometimes, and sometimes no matter the situation, you're going to get screwed over a bit but that doesn't mean you can't or won't come out on top in the end.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. After complications and 6 more surgeries. I had an ileostomy for 6 years and am currently living with a straight pull-thru. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP.
Wednesday, November 21, 2012
I'm going to fall into line for the Thanksgiving holiday and review blessings received. I've discussed in several earlier posts about the journey I've overcome with my health and the ongoing issues that plague my days and the countless blessings I've received to endure. So I'm not going to go over those yet again.
What I am going to do though is encourage you to remember your own blessings, your own journey and struggles.
Every day is a new day and no matter what your previous days have been like, it doesn't mean that the future days will be same. That's true for good and bad days. We never know what will happen, we can only prepare ourselves for the best and the worst. Through our actions to do the best we can with any given situation and complete precautionary steps to prepare and prevent, we are most apt to deal with any event. We can't just sit back and expect something to happen or to change, we must make the change ourselves. It is not fair or right to expect anyone else to make the change for us. Like so many things, it starts from within ourselves and with us.
Whether you're struggling with finances, coping, or physical health - none of it will change on it's own. You must take a step to force the change process forward. Ask for assistance, information, support and rediscover your own strength and resourcefulness. Support networks are there for individuals to provide support and encouragement, not to take over one's life.
Now I realize this probably sounds like a subconscious rant or scolding, but that's not my intent. Looking back through my experiences, I'm very thankful for those that helped guide me on my journey, who encouraged me to take that next step and I'm grateful that these individuals didn't enable me to give up on directing my own life.
Every struggle is an opportunity for something to change, recognize this and make every attempt to discover what changes can be made to improve the situation and you will glad for it later on. Life is many times a trial and error experience, we must adapt and change in order to stay in the game. We've evolved this way and because of it, we can do just that.
When you meet your next struggle, take a deep breath and calm yourself so that you may re-examine it through a clearer view and mind. Remember your support network and your own inner strength, this combination is very powerful to enable the adaptation and growth for survival.
And that is something to be very grateful for in life.
Tuesday, October 30, 2012
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.
Sunday, October 14, 2012
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.
Saturday, October 6, 2012
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?
Thursday, September 27, 2012
I had another routine follow up with GI doctor this week and had great results. I've been taking my B12 regularly for 3-4 weeks now and my B12 jumped from 400's to 800's! It's in the top third of the normal range, I'm not sure I've ever had such a high B12. Course, I don't really notice any difference when my B12 or hemoglobin is low, it all feels the same to me. While visiting with my doctor during my appointment, we started talking about that 1st year of surgeries and previous and future doctors. In my last post I shared about my experiences with my 1st surgeon and the treachery that accompianed him. During my appointment I learned some new information that I didn't remember or know about the medical demons that continue to haunt me. My second complication from my 1st surgery, when I went to the ER for stomach pain that actually was caused by my intestine twisting around itself and surrounding organs my surgeon was actually out of town and it was the 3 residents alone that decided that nothing was wrong with me and told me and my parents that I was merely a "whiny child". This doesn't change any of my thoughts or feelings regarding my 1st surgeon but it reinforced my contempt for the 3 residents. It is because of these residents that I don't trust any resident. To add insult to injury, when I returned again to the ER after that incident and adequate testing was completed to discover the cortortion and emergency surgery was required as it was a miracle I hadn't died during the night from the lack of blood flow. The residents were aware of all this and no statement to my parents was made, no apology that it had led to near death and could have been prevented, no indication at all that these residents had any compassion or understanding for what I had gone through under their care. If they had completed a thorough assessment and testing the 1st time, my complications may never have progressed to such lengths and my years of pain may have been avoidable. But I will never know. My conversation with my doctor reminded me that although I am safe from my 1st surgeon, I don't recall the names of those 3 residents and am at risk of accidently becoming one of their patients without properly protecting myself by being able to recognize their names. So I am requesting my medical records so that I may discover their names and avoid them for my life.
Just as these individuals have allowed and created lifelong anguish and mistrust in medical providers for me, there are a few medical providers whom I deeply trust and respect. I do not easily trust medical providers and this last year I realized that this mistrust and apprehension about new providers has generalized even to dentists. I trust one hospital and a handful of doctors, these are my medical angels.
My GI doctor, who I have known since I was 8, means the world to me. I feel safe under her guidance, she is compassionate, understanding, and extremely knowledgeable and in fact is one of the top pediatric GI doctors in the state. She was the only female in her medical program and she is near 90 now. In the summers she invites me over for swimming and figs from her trees. She is protective over me and goes to great lengths to protect my physical and mental safety, which is why she continues to follow me when I am almost 30. She has promised if and when I am forced to become followed by another GI, she will thoroughly brief the my new doctor about my history, present, medical and psychological needs. Whenever she requested for another doctor to perform testing, she has physically been in the room to oversee the testing and provide me peace of mind as I know that if she is present, she will oversee my care and protect me from harm. She is very dear to my heart and I trust no other doctor like I trust her. There really aren't enough words to describe how much she means to me, how much I respect and trust her, and all the care she provides me.
My 2nd surgeon was an incredible surgeon. My only sadness is that he is a pediatric only surgeon and he won't be able to perform any future surgeries I should need. He has phenomenal medical skills and outstanding compassion for his patients. He understood my fears, my mistrust, my fragile psyche and he gave me hope and support. He was patient with me and also took great lengths to ensure my comfort. He was the surgeon that performed my last 2 surgeries. After my last surgery, I asked him if he could "knock me out" by ordering me Finnegan to be given when my NG tube was to be removed. I had undergone such pain and misery that year from extensive, unceasing medical tests and procedures, hospitalizations, symptoms and near death. I was on the edge, mentally exhausted from it all and not having to endure the pain of the NG tube removal would help to ease my mind and my body. He told me "I'll order you something better". And he did. The only problem was, the nurses didn't give me the medicine. I told them I needed the medicine my surgeon ordered, the nurses told me that there wasn't anything ordered to "knock me out" and I either could have the tube pulled then or wait until they could get an order, which they said would take several hours. I was so angry. I hated my surgeon in that moment. The words that he didn't order me any such medicine burned in my ears, stabbed my heart, and wrenched my soul. I trusted this surgeon for almost 2 years, I believed him when he told me something. He betrayed me, knowing the betrayals I suffered from my 1st surgeon and his crackerjack team. How dare he! I agreed to let the nurses remove my NG tube without any medicine. As every time in the past, the NG tube made my esophagus, throat, and nose raw with pain and I cried and screamed from it all. Once the tube was removed, I thrashed in my hospital bed for hours. I was overcome with anger, hate, pain and I couldn't stop the screaming, the words I yelled at my surgeon, willing him to hear me, the uncontrolled sobbing that went on for hours until I finally collapsed from pure exhaustion and a pained body from it all. My mind could not respond any other way. My mother tried to comfort me. I couldn't be comforted, the man I thought was my hero surgeon had lied to me and betrayed me. Oh the psychological harm it had done to me. He LIED to me!
The next morning my surgeon visited me. I told him I hated him, he betrayed my trust, he knew all I had endured as a child. He listened to my rant and didn't say anything until I was done. He apologized to me. He explained that he had ordered the medicine but the hospital pharmacy didn't carry the medicine and he wasn't informed so until after the NG tube was removed and the nurses told him how distraught I had been. He explained that if he had known the pharmacy wouldn't fill the medicine he ordered, he would have ordered something else. He explained this quietly and kindly, not a hint of defensiveness in his tone or body. He didn't lie to me, he had tried, he cared. My heart sank with this new information, I had genuinely hated him without real cause. Instantly my mind was began to repair itself from the previous day's anguish and became stronger again knowing that I could still trust this surgeon, I hadn't been betrayed.
There aren't many doctors that will listen to a patient release their emotions and kindly apologize and explain the mishap without defensiveness or blaming the patient but instead continue to provide compassionate understanding.
My anaesthesiologist in high school was also so kindhearted. My GI doctor knew how safe I felt this this anaesthesiologist that whenever I had to have a medical procedure or surgery that required anaesthesia, she scheduled my procedures for when he could care for me. To this day, she offers to do the same for any procedures I have to undergo. Another example of just how amazing my GI doctor is! My anaesthesiologist is a very funny man and uses his humor to help relax his patients, distract them from the procedure they're about to undergo and carefully monitors them. He knew about my difficulty with local sedation, that I've become immune to locals and require general anaesthesia and my fear of waking up again during any procedure. He provided reassurance that he would not let me wake up during a procedure and made certain I was comfortable as I could. I am forever grateful for his care, as every little bit helps to reduce the agony that medical issues brings.
My gynecologist is another medical angel. I didn't like my previous gynecologist, I never felt comfortable with her and questioned her competence. Early on I knew I didn't want to have any children myself, I knew I wasn't meant to become pregnant or give birth and with good reason. There are so many risks for someone with such abdominal trauma to undergo pregnancy and childbirth. The intestine can wrap around the uterus, the intestine can rupture, can't take the medications that are so necessary for daily functioning just to name a few. I knew in my heart of hearts that if I were to become pregnant, I would most likely die and if I didn't, I would wish I had. Mentally and physically, I wouldn't be able to take the pain and the threat of such risks. I definitely wouldn't be able to take it if the threats became reality. After my last surgery, I decided that if I ever had to have surgery again that I would opt to have my tubes tied at the same time. I wouldn't choose to have the surgery by itself because I had already gone through enough surgeries and didn't want to go through another one. But if I was having another surgery anyway, I might as well have this one at the same time. In graduate school I found out about the Essure Procedure and this is what I had been waiting for all my life. You can read more about it at the website, but basically it is an outpatient procedure and tiny metal coils are inserted into each fallopian tube. Anaesthesia isn't required although you are given a light sedative, a relaxer and pain pill as the cervix has to be opened. After about 6 months, scar tissue builds around the coils to permanently block the fallopian tubes thereby preventing pregnancy forever! I researched the procedure, the results, the risks and felt confident this was a great option for me. I searched for a local Essure trained doctor. I had little hope that there actually would be a doctor in my area but there was! I called that day to schedule my appointment. I was only 23 and knew that some doctors would refuse to perform a sterilization procedure for someone so young who hadn't even had any children yet. Realizing the potential obstacle, I had my speech prepared, more like my plea, on why I wanted the essure procedure and why the doctor should perform it for me. When I arrived at the office, I felt like I had chosen the doctor well. She voiced her concerns about my possible regret and I pled my case. She was very understanding and realizing my commitment to not becoming pregnant, agreed to perform the procedure for me.
I met my now husband a month and a half before my sterilization procedure. After 2-3 weeks of dating, I told him what I was about to embark on and I told him that he needed to decide if he wanted to stay or if he needed to exit because I wasn't changing my mind for anyone or anything. Without hesitation, he told me he was staying and would support me in whatever health decisions I made for myself. This said a lot to me about my now husband's respect for others and respect for women's healthcare.
My gynecologist and her clinical staff were very understanding about my medical history, my anxiety and fear of any pain and the trauma I've endured and were thus extremely supportive and eager to provide me reassurance and to reduce my anxiety. The procedure was very painful, although it wasn't the worst pain I had ever experienced and I was determined to make it through to the end of the procedure.
I thought I would have fertility issues even if I did want to become pregnant because I've had health complications that increase infertility, all the adhesions in my abdomen and pelvis, fluid in my fallopian tubes (my medical team never could find out what was going on here), I had a fistula on my tube or something similar. My gut instinct was right, one of my fallopian tubes was blocked shut!
After my procedure, I decided to become a permanent patient of this gynecologist and I've never regretted it. She understands the GI issues I have and how they relate to my reproductive system and supports my healthcare choices. I actually look forward to my annual exam with her as my doctor!
Even though there are medical providers whose incompetence have permanently scarred my psyche and risked my life, there are also providers who have my best interest at heart and make every effort to protect my health and safety. It is because of these medical angels that I'm doing as well as I am today.
What are your experiences with medical angels and demons?
Friday, September 21, 2012
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've gone through too much since then and my health has made a practical 180 to what it was the year after my reversal surgery to give up on my straight pull thru and return to an ostomy. My health doesn't warrant it at this point. And so I keep my resolve to endure the SOS of my body during an SBS episode, the occasional emotional release of pent up pain and mental exhaustion and I remember that in a few hours or a day, it'll be better, my life will resume and I'll be alright. And it always is.
When your body is sending out an SOS, listen to it and follow the care recommendations for it and reach out to others to support you through the crisis. Whatever the outcome, such steps will help and you'll get through it one way or another.
Saturday, September 15, 2012
Recently I was offered a protein jello shot, before I could finally form words to say no thank you, all I could think was Hell No! The jello reminded me of how much our tastes can change and vary due to chronic illness.
As a kid I liked jello. I had fun making different shapes out of jello with my mom and playing with the jiggling shapes before slurping up pieces of the gelatin and trying to chew the mess that only became broken into smaller and smaller pieces of slimy, jiggly pieces before I finally gave up and just swallowed all the tiny chunks. It may not sound like I liked it by my description, but how else do you describe jello? It's a strange concoction.
This would all change though after my 1st surgery and the time following this period. For days I could eat absolutely nothing and once I could have some type of subsistence, it was just liquids for days. And this cycle repeated itself for a year. The point came when I refused to eat the jello on my hospital food tray. I drank the broth, sucked on Popsicles and crunched on ice chips but the jello was always returned untouched no matter how hungry I was and that's how its stayed throughout my adolescence and adult years. I abhor jello now, the site only floods my mind with memories of hospitalizations and restricted diets. I've never even had a liquor jello shot!
In A Look Back I chronicled my high school experiences and graduating to different diet levels after my 7th surgery. After I graduated to chicken and rice only as my lunch and dinner meals for weeks, it took me a long time to eat chicken and rice again. The thought and smell of it turned my stomach. For weeks I could only have an egg for breakfast, although I became tired of this, it wasn't as revolting as chicken and rice became.
After about 8 years, I started to love plain chicken and rice and even crave it at times! It reminds me of those extremely restricted diet periods, but it doesn't have even near the effect as jello does on my mind, taste buds and stomach.
In high school after my 6th surgery, when I was returning to a regular diet the only foods I could tolerate were custard and bacon. My favorites tasted disgusting and smelled even worse to me. My doctor threatened me with various aversive situations until I finally relented and forced myself to eat more than just a small custard and strips of bacon for every meal. Now, I still love custard but I cringe at the thought and sight of bacon. Not because I don't like it but because every time I'm presented with bacon, I hear my doctor's voice lecturing me daily about bacon - "Bacon is only fat, barely any protein. You have to get your protein up and bacon isn't going to do anything for you. You're eating straight fat, that's all it is."
I still won't drink protein shakes or eat protein bars and will only drink bullion broth if it's my only choice.
My times without food became quite comfortable and I thought it wouldn't be a bad way to die. I didn't have pain from lack of food and perhaps that is because when I don't eat for a while, my stomach finally calms itself. As you may recall in Evils of Food, food has quite the opposite effect on my body that most people experience from food.
It's hard to get our appetite going again after being on npo or liquid only for extended periods of time. Food just isn't appealing anymore. We have to quite literally force ourselves to eat again otherwise we'll never get our appetite back. It's a huge pain to do so and can even be painful, but it's a must if we want our body to recover. Without nutrients, especially protein, our body has further reduced immunity, lower energy and strength levels. It takes a lot to get albumin back into range after illnesses and it's going to take a few months to get it where it needs to be. But it will be worth it. With appropriate albumin, our muscles repair themselves, the immune system is more capable of fighting viruses and illnesses, we become stronger and have more energy for necessary activities and our electrolytes start to become balanced again so that we aren't malnourished and at risk of the effects of too high or too low nutrients.
A few tips I have learned from my hospitalizations, severe dehydration and malnutrition are:
- Miso soup is a great substitute for bullion broths. It has sodium and a much better taste. I also found Campbell's has a condensed Chicken Won Ton soup that is basically broth with a few pieces of won ton or chicken bits, easily removed if on a liquid only diet.
- For dehydration, it is best to stay away from gatorade if you're severely dehydrated. Sugar increases diarrhea which can further deplete your electrolytes. Instead, try Pedialyte or it's off brand for more electrolytes and lower sugar than sports drinks. And if you can, drink V8. It has even more electrolytes without the sugar than Pedialyte.
- If having severe diarrhea, avoid sugar free gums and candies. The artificial sweetners can actually increase your diarrhea more than real sugar does. And if you're like me, milk acts like a natural laxative and should be avoided!
- Sometimes if you're having regular diarrhea and not severe, extended diarrhea, eating something can help to give your stomach something to digest and will have a slight enough binding effect to get the bowel back into order.
- Over the counter and prescription strength anti-diarrhea medications work differently for everyone. Sometimes over the counter is enough where as a prescription strength doesn't work at all. Each medicine has just a different amount of ingredients and the right combination amount can do the trick. For instance, Lonox is the generic for Lomotil. Lonox sometimes has a slight variance on the amount of ingredients than Lomotil causing Lomotil to be more effective for some whereas Lonox is enough for others. There are also anti-diarrhea shots, Sandostatin, that is a stronger strength than pills.
Sunday, September 9, 2012
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.
Sunday, August 26, 2012
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.
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.
Wednesday, August 22, 2012
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.
Saturday, August 18, 2012
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.
Tuesday, August 7, 2012
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???
Sunday, July 22, 2012
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?
Thursday, July 12, 2012
Planning for an activity away from home and specifically in a location you're not sure about the access to restrooms, is tiring and difficult at times. Yet, I never really thought about my thinking about that.
For those living with bowel and bladder disorders, this is a huge concern. I feel as though my life revolves a toilet. What a disgusting thing for my life to revolve around.
From small to big plans, that toilet is forever beckoning. For instance:
Every outing I want to go on, every activity I want to do, my immediate thought is restroom access.
For the 4th of July, my family and I went to a local park to enjoy an evening of music and fireworks. So all day I watched my food intake, packed up my porta-potty survival kit, and went to the restroom several times right before leaving the house. Then upon arriving, again I tried to limit my food and fluid intake and resist the need to use the restroom for as long as I could. I enjoyed my evening but at every turn, that toilet crept into my thoughts.
My husband and I will be purchasing raw land to build on in a few years. I'm very excited about this new adventure. I'm even looking forward to maintaining the property until we are ready to build, so I'm planning my mowing trips so that I can keep it under control for when we do build and my thoughts stop dead in their tracks and I begin to worry about being able to mow when there won't be any restrooms easily accessible due to location. Again that toilet is calling!
I traveled to Europe with my family a few years ago (and would like to again in the future) and restroom access was a giant concern and issue! Some places wouldn't allow you to use restrooms, some activities couldn't stop for a bathroom break for hours, some activities I couldn't even do because of bowel issues. That damn toilet!
So what do we do?
Sit at home, spending all our time with that infuriating yet so necessary and ingenious invention or do we go out, take the risk and enjoy what we can?
Because the truth is, as much as it sucks and sometimes hurts....if we let it stop us from doing at least part of what we want, then it will take complete control of our lives and we'll spiral to an abyss. And an abyss is very hard to climb out of, trust me.
It's like with any illness, we have to accommodate it. Some things we're going to have to change, but we don't have to change everything. So instead of getting to mow until it's done, I'll have to mow for a while and take a 20 minute drive for a restroom break before I really need one.
I can still travel but I'll need to plan on needing restroom access, know when I should take a break before I need the break, and do the activities I can without fretting about it.
But if I plan for that, then I can still enjoy and complete my other plans. And so can you.
Friday, June 29, 2012
It's my party and I'll cry if I want to ... remember that song? I'm sort of in this mood as I look forward to my birthday during the upcoming month. I'll be almost 30.
No, that's not what has me in a funk.
I wasn't supposed to live past age 9 or 10. When I was 17 I told my mother goodbye as I readied myself for approaching death and my doctor hoped to see me walk into her office the following week. I whole heartedly believed I would die before my 22nd birthday.
So each year on my birthday I have a "woah!" moment and I'm reminded that I made it to another year.
This can be a very strong emotion for individuals as they come to the realization that they have cheated death and can serve as a strong motivation and inspiration for improved health, life and dreams. For others it can become a thrill ride, a game, an adrenaline rush for finding the next adventure to beat the odds.
Another reason is that my best friend and I share the same birthday, who is also well known to the ostomy and bowel disorders circles. However, due to his health struggles the battle became too unbearable and he took his own life to end the pain. I understood his decision the moment I learned of the news, as much as it pained me to have lost him.
The loss of friends and even self is far too common in these circles and is a hard reality to accept. Nevertheless, it is a reality that we each must make peace with or we'll lose ourselves mentally and emotionally first.
So make the acknowledgement, share the emotion, and live your life to the fullest. Cliche, right? Perhaps, but do it anyway. Start checking things off your bucket list, take care of yourself physically and emotionally, share with others and learn from them, care for the well being of others and contribute to humanity, locally or globally. At times the small picture is not pretty, remember to look at the whole picture and that a moment in time, only lasts a moment.
Friday, June 22, 2012
I found a new website, I hadn't heard anything about it in the UOAA circles. I haven't explored all it has to offer, but have found it promising thus far.
I love finding new resources, whether it's for personal or business use. It can be addicting, the thrill of the hunt for helpful resources and the rush of victory knowing that you've found a gem that will be a great asset to you or others. I've had to spend a large amount of time researching resources for clients I work with. It provides a great sense of satisfaction locating, pursuing, and obtaining a community resource for someone; knowing that you're helping to make a difference in the lives of others.
I believe this new website will be able to do just that, to serve as a unique educational and supportive resource.
Would you like me to get to the short of it now?
Okay, okay....it is Short Bowel Support!
This is a website specifically for those suffering from Short Bowel Syndrome (SBS). It offers information about SBS and the body, treatment, lifestyle support, resources and community forums.
One thing I've found very interesting is the SBS survey that is available for visitors to complete.
The Survey Results help us to view the demographics of individuals with SBS so that we may better understand who is most at risk and the primary causes of SBS.
For instance, would you have suspected that the majority of SBS sufferers that completed the survey are women ages 18-35, followed by ages 46-55? I don't know what this boils down to other than I find it interesting. At least it may be helpful for focusing education, support, and treatment to those most affected.
This community support and information would have been helpful to me in high school during my most trying period with SBS. I tried over the counter medications that worked for a short period of time and then the narcotic strength Lomotil until my body went haywire, as discussed in A Look Back. I even changed to the Sub Q injection medication Sandostatin until I had built up such a strong allergy to the medication that I was unable to move my elbow until discontinuing the medication and all traces of the Sandostatin were out of my body. For almost a year, this combination of medications was not effective for me. Slowly but surely, I was able to only use the Lomotil and to reduce my dosage to 4 pills a day from 8. With this amount, with consideration of diet, the uncontrolled is now controlled.
I look forward to exploring the Short Bowel Support's website further, I hope you will as well.
Thursday, June 14, 2012
I had my routine follow up appointment this week with my GI. My appointments are typically routine now, I get my list of blood labs and UA completed the week before, review my labs at my appointment and am reminded about the importance of taking all my medications as prescribed and then we catch up on my personal life.
My medication list has been allowed to be significantly shortened from what it was previously. I still have a drawer that is solely for my medication bottles, this is indeed much better than the cabinet that was devoted to my medications for years. Some medications I no longer require, some my doctor has given up on me taking as directed, and others I take religiously without fail.
Since my last appointment in January, I decided to play a game of roulette with my B-12. I am supposed to take 2 cc twice a week of B-12. Now have I done this since living on my own for the last 4-5 years? No, of course not. Half the time I forget, half the time I don't want to remind my husband to give me my shots.
But this time, I willingly and knowingly decided to forgo my B-12 shots until June in order to see how much I actually did need B-12. The longer I went without my b-12 and the longer I went without any symptoms of fatigue from lack of B-12, the more I was determined to see my b-12 temper tantrum experiment through to the end.
In January my B-12 was in the 620-650 area, in June it was 234. Granted, I also have discovered that if I take my prescribed b-12 shots two nights before getting lab work done, then my b-12 appears nicely elevated and gives the illusion that I am following my doctor's orders without fail.
A lesson is learned each time we play roulette with our health.
Sometimes we win, sometimes we break even, and sometimes we lose our shirts and pants and are given a hospital gown.
Sunday, June 10, 2012
As I prepare for my routine follow up with my GI this week, I look back on how my health once was. Each appointment, my blood labs and UA are reviewed. I'm usually never within range for several electrolytes, but my labs are still better than what they once were. During the years after my surgery for my straight pull-thru, I battled the odds with my out of control electrolytes. I had weekly or more frequent appointments with my GI to review my labs in order determine if I needed to be hospitalized again just yet and to review any recent tests I had underwent. My labs included a sodium as low as 111 (should have had a brain seizure), potassium as low as 1.9 (should have had a heart attack), protein as low as 3, low magnesium and b-12, hemoglobin as low as 4. My medications included potassium, sodium tablets and drinks (spoons of salt in a one ounce cup to be swallowed 3 x day), magnesium, iron, polyp growth reducers, bowel control pills and shots, pain medications, protein pills and foods (shakes, bars, and whatever else my mother could cram in me. Ick!) and of course b-12 shots. I may be forgetting some, as you're aware memories tend to blur when dealing with health events.
I had a team of specialists completing tests and consulting with my doctor. My doctor consulted other specialists around the world and I even traveled out of state for continued testing to try to determine what was causing my out of control electrolytes. And oh were some of the tests dreadful, especially when they were completed repeatedly! Everything from simple x-rays to scans with rectal tubes inserted for contrast to be seen in my cavity (this was the most painful) and even making my blood radioactive and injecting the radioactive blood back into my body. After a year, it was decided I had to undergo exploratory surgery as my lost option. It was during the exploratory surgery that it was discovered that I had an intestinal stricture from excessive scar tissue and a hole in my intestine from an ulcer. You see, the stricture made bowel control and nutrient absorption virtually impossible. Stool was unable to pass through the stricture resulting in extreme pain and constipation until I involuntarily vomited, which released the pressure allowing stool to pass through the stricture. Only it wouldn't stop, because there was literally a liter or more of liquid in my intestine that was finally able to be voided. This cycle is what led to my uncontrolled electrolytes.
Scar tissue was removed and I was placed on TPN to allow the intestine hole to heal.
I also underwent hyperbaric treatments where I received 100% oxygen therapy for around 2 hours 2-3 times weekly for a couple months or more. I don't recall the full number of sessions, just that I was extremely concerned about being able to avoid using the bedpan in the hyperbaric chamber with 4-6 other people watching me. Fortunately I never had to use that bedpan, sometimes I don't know how but so grateful I made it!
After a few months of TPN only, which meant nothing by mouth not even liquid for an extended period of time, I slowly was able to begin drinking and eating foods. I started off with one ounce of ice chips once an hour, to a few sips of water every predetermined interval, to a set amount of water at every interval to being able to drink liquids regularly again. I did the same with food. I was only allowed to eat one egg, with salt or pepper only for seasoning, for breakfast everyday. Then I graduated to my breakfast egg and a small salt and peppered boiled chicken breast with a small amount of unseasoned rice for lunch. Later I was able to also have dinner, and it was the same meal as for lunch. After several weeks of this exact same menu everyday, I was able to include a little more variety. This variety came in the forms of any high protein food, mainly lean meats at every meal and several protein bars and protein shakes everyday. The protein bars and shakes were extremely harsh on my body causing unceasing severe stomach cramps and pain.
I hated eating, for weeks it was the same bland food and then when I could have some variety it was only foods that tasted awful and caused extreme pain.
Over time I had my port removed, was hospitalized on average once every 3-4 months for electrolytes and blood transfusions until 2007, when I received my last blood transfusions. My hemoglobin was 4 and I received 4 transfusions. Funny thing is, I didn't even know my hemoglobin was so low and was in complete surprise when my doctor personally called me at work that day and demanded I go straight to the hospital to be admitted. I argued with her about finishing work or classes that day, going home to pack some clothing like I did almost every other time she ordered me to be directly admitted to the hospital. Many times I would advise my professors that I would be admitted to the hospital at the end of class for "internal bleeding" (nicest and simplest way to say 'uncontrollable bloody stools' I could think of) for an undetermined amount of time and would return to class as soon as I was released. I learned over time that others thought I was crazy for not directly going to the hospital as instructed by my doctor. And this last hospitalization, my doctor was not allowing any room for my day's agenda.
I've been very blessed since then, although its a never ending battle, I'm able to maintain my electrolytes well enough to not require hospitalization. I hope my lucky streak will not break for decades to come.