Compliance

Through the years my GI specialist has come to know me extremely well. She knows when I tell her I'm not doing something, I mean it. She knows when I'm not being completely compliant like I should and she even knows some of my tricks sometimes. She knows my limits and she knows not to push me further than what I can handle physically and emotionally. She knows how to advocate for me, she knows my mistrust and paranoia, and how to ensure my safety, comfort and well being. She knows my coping regiment and she knows how I best respond to care. She knows me.

I've told her I'm not allowing any rectal exams without sedation nor will I take any laxatives, enemas, or suppositories for a colonoscopy or endoscopy. Hence, why I haven't had either exam since 2007. She's brought up having another scope done since 2007, and I have agreed to undergo another scope if I can fast, and only fast, for the scope. But I also know that if I don't remind her to schedule the scope, I won't have to mess with it at all.  Yes, this could prove a grievous error on my part. I was advised I'd have stomach cancer by age 30 - in 2 more years. But that was 2 or more scopes ago and my last scope there weren't any polyps of any kind found that time. I don't know what I'd do if I had cancer that couldn't be treated by surgery. I don't know if I would consent to chemo or radiation. My grandfather had radiation and it shattered the rest of his intestines. Yes, that was back in the 1980's so a lot has improved since then. Yet, I can't forget the complications my grandfather suffered. I don't know if I could withstand the physical and emotional toil that accompanies chemo or radiation. I just don't know. But I do know, that I'm not worried about it.
I did have a CT scan with dye in 2011 that didn't show anything remarkable, so I know at least at that time I didn't have any large polyps or tumors. I did discover that my kidneys are connected in the back instead of the front, as they're supposed to be. I don't know why there is always something abnormal about my kidney design. My right kidney is small and in front of the pelvis instead of behind the pelvis, so it's not protected.

I've stopped medications, such as Sulindac and Celebrex, simply because I got tired of taking them. I am faithful in my Lomotil and my Iron though. After not taking Sulindac and Celebrex for so many years, when I finally felt guilty and asked if I should start taking them, my doctor must have known better because she told me not to worry about them!

I've been horrible about taking my B12 regularly since I got married. I usually miss 2 months and do great the 3rd month - before my regular GI appointments. Then I dose up quickly on my B12 to make it look good. This month she caught on though, she questioned the date of B12 and the date of lab. She just smiled her knowing smile at me and suggested I take my B12 regularly. Which I've been dong better at. This month I haven't missed my series at all. I also got new syringes - insulin syringes - and boy do they make a difference! They're much easier for me to sit through and much easier for my husband to use.
Yet, I feel more tired this month than I have in several months of not taking my B12 regularly. Every day I end up taking an involuntary nap - sometimes multiple! In discussion with other FAPers, I've noticed that some also have trouble with Vitamin D and even their Thyroid that makes them fatigued. If this continues, I plan to ask my doctor about these as well.

Then sometimes you're compliant and a doctor labels you as non-compliant. For instance, my GI doctor wants me to have a 2nd bone density scan. My first bone density scan was in high school  so well over 10 years ago. I agreed to go for the scan again, I've even called to remind my doctor's office about it. However, the bone density doctor has me labeled as non-compliant for supposedly cancelling an appointment and not rescheduled in 2010. Two things beg the question here.

1. Why would I have a random, sudden appointment scheduled at minimum 7 years later without my GI doctor or myself knowing about it?  I never had a follow up appointment with this doctor after the bone scan. My GI doctor reviewed the results with me beyond any that were given at the time of the scan. Why would I need a follow up appointment 7 years later and not more regularly in between?

2. Why would I recognize the doctor's name after 7 years when I had been to the doctor one time? I know the names of my past doctors and I even know the names of a couple doctors who regularly consulted with my GI. I do not remember the names of doctors I met one time. 

And yet, this doctor won't see me again in spite of the unraveling of her office's excuses. I actually take offense to this. My doctor is amazing and obviously finds reason to keep me as her patient when I should have transferred to an adult GI 10 years ago. When I am forced to transfer, my doctor already has information prepared for my future adult GI as to how to care for me and how to respect my limits due to my past trauma. Even the adult GI, who I plan to transfer to when so forced, asks my GI doctor about me regularly in preparation of taking over my care.

So sometimes, even when you're compliant, someone or something will attempt to make it appear otherwise. In such cases, it's a great thing to have a strong doctor advocating for you. And if you don't have such a doctor, I highly recommend finding someone else. I've been there with a negligent, uncaring doctor and I paid for it. When you find that strong doctor, who knows you, your body, strengths and limits, so well - hang on to them for dear life. There are a great many of doctors like that I've found.

Pardon Me?

We've all experienced it, someone just has to say or do something that is inappropriate and even downright offensive to someone with conditions like ours. In such cases, it's all we can do to control our impulse to give a thorough tongue lashing or even a punch to the offensive person. Such insults are common etiquette, however most people don't have a real understanding of bowel diseases and all that's involved nor do most people seem to understand how their actions or words affect others, not that it's truly meant to be offensive or insulting - it's just a lack of knowledge and understanding.

Photo Borrowed from Jezebel Article

• We are much more sensitive to movement than those without such diseases.

While recovering from surgery, some church friends came to visit and their children decided to play in my wheelchair and repeatedly hit my hospital bed in the process. Not only was this annoying but also excruciating and nauseating! Or when someone bounces around next to you. I have to remind my husband to stop making so many movements as I become nauseated and the jostling also upsets my intestine - even just from someone walking heavily nearby me.

• Eating or drinking around us when we're not allowed to eat or drink is mere torture. 

During most of my hospital stays, I wasn't allowed to eat or drink and it was torture watching and hearing visitors eating, drinking and talking about food/drink in my presence. I finally stopped allowing anyone to visit if they were going to eat/drink or talk about food/drink in front of me in my hospital room. I even had church member try to eat MY gift of cookies when I couldn't eat anything yet, and she tried to eat them in front of me! Thankfully one of my aunts was there to quickly snap her back into line.

• Commenting about our bathroom habits is extremely rude.

I just cringe when someone comments about my stomach rumblings,  my frequent visits to a restroom, and especially if the topic of odor comes up - I just want to scream in a fit of rage and hide from embarassment. None of these things require commenting, so why are others compelled to call attention?? We are aware of our own bathroom visits, urges and about odor. We don't need help bringing more attention to our bowel diseases nor do we appreciate the attention. Keep such thoughts to yourself and please don't snicker or laugh at our problems.

• Denying or ignoring restroom access and needs.

A similar vein to this is when others ignore our requests and need for a restroom break. It is nerve racking when we don't have control over access to a restroom, whether it's worrying about a business denying us access, not knowing where a nearby restroom is, or those we're with driving or walking that don't want to take the time for us to use a restroom. When I was a child and had an ostomy I was riding with my aunt and uncle. I needed to use the restroom as my ostomy pouch was becoming too full. Although I repeatedly requested to stop at the next gas station for a restroom, my uncle refused to stop. My aunt made him stop finally after my ostomy appliance began leaking from becoming too full. Even to this day, I'm leary about riding with my aunt and uncle.

• "Advice" from non-professionals and others unfamiliar with our conditions.

I don't know how many times I've been given unwanted "advice" about my health by individuals who are not A) doctors, B) don't know my history or symptoms, and C) aren't familiar with my condition or similar conditions. Bowel disease isn't a simple condition nor does it have simple answers.
Recently I was advised that "If you took your B12 regularly then you wouldn't be anemic".
Really now?? Perhaps that's enough for some, but considering I took B12 regularly for nearly 15 years and never stopped being anemic I wouldn't say that B12 is enough to cure my anemia, regardless how often I take my B12. Nice try though.
Or perhaps when my mother was told that the reason I was so sick was because she didn't pray enough.  Oh is that all it takes to cure someone?? Gee, we'll just give that a try then. Not to mention that my mother is a religious person and does her fair share of praying. And my parents will do anything they possibly can for my health and well being. Needless to say, this was a very wrong thing to say to someone - blaming a parent for their child's poor health or blaming an individual for their poor health.

• You don't look sick or that sick.

Illness isn't always blatantly visible. You can't see the internal battle my body is going through and I don't always show the pain I'm experiencing. I have a wheelchair and a handicap placard for when I have difficulty walking when my SBS flares up. As I discussed in SBS SOS, You can't see when my SBS flares up other than I walk funny, sit funny and am running to a restroom as quickly as I can and am doing so very frequently. I am often questioned, and rudely harassed, about my use of my wheelchair and my handicap placard. Yet, without these aids I am not able to leave my residence at times.

• Weight isn't such a light topic.

Chronic illness affects our weight drastically at times - from one extreme to the other. Most of us aren't at a good medium. Medications can cause weight gain and bowel disease flare ups affect our nourishment and often causes weight loss. At my lowest during bad health periods, I was at 87 pounds and some of my doctors considered me anorexic after my health started to stabilize. Not only was I not able to eat for the most part of a year from repeated procedures and surgeries, my stomach shrank from not being allowed to eat and when I could eat, I was losing most of my nutrients. In the 6th grade I was placed on a diet to gain weight. After the weight gain I was still only at 100 pounds until my junior year in high school. It was only at this time that I was able to gain anymore weight because I was placed on TPN as I wasn't allowed to eat due to a hole in my intestine, which is explained in more detail in A Look Back. Since that time, my weight has been up and down as my metabolism and appetite has been altered. I'm at a healthy weight now, although I would like to lose a few pounds. Regardless what my weight is curently or what it has been in the past, there is never been a short supply of comments by others about my weight - whether about being too skinny or too heavy.

• You were fine earlier.

Bowel disease isn't constant. We have good days and bad days and sometimes it changes during the same day. We are deeply affected by food and even a specific diet isn't a cure all. Some foods may make us sick one time and not another. The Evils of Food depicts some of the considerations I have to make every time I eat something. This greatly affects the ability to participate in activities. There are a lot of times that I think I'll be able to do an activity and when the time approaches, I'm just not able to participate. Our energy, sleep, mobility, and mood are affected by our conditions. Most of us are continuously battling malnourishment which affects all these areas.

So what would be appropriate????

• Just supporting us and being there for us.
• Please don't make any negative comments or bring attention to our needs to embarras us. 
• Ask if there's anything that would be helpful.
• Please don't hold it against us when we're not able to do something. 
• Feel free to ask questions to better understand our condition and what we're experiencing. 

We appreciate the concern and care of our loved ones and are thankful to have you in our lives.

Mental Prep

We all have our routines, our rituals that we employ when dealing with health issues or health needs. Techniques utilized vary from person to person and even from situation to situation. In Stressed Indeed I discussed some of the techniques I utilize to reduce anxiety and stress, especially in times of medical crisis or procedures. There are a lot of different situations and procedures that require mental preparation to tackle what's at hand.

For instance, I always request for my blood to be drawn and any IV to be placed on my left arm. When I receive my B12 shots, I prefer to receive the first shot in my left arm and then my right arm. I chose my left over my right because I'm right handed and want to maintain use of my right arm and hand. This habitual preference though also has aided in my mental preparation for the impending needle stick.
Prior to each needle stick I employ other habitual behaviors as well, such as looking away, taking a deep breath, and focusing on digging my thumb nail into my finger while making sure to remain absolutely still. If I falter from this routine then my mental preparation is altered.

Not only does having a method to mentally prepare for health routines, it also reduces anxiety before, during and after. And when we're able to remain calm during a routine or procedure, the better the outome for us - physically and emotionally. It is less traumatizing and reduces risk of mistakes or errors due to erratic behavior that can be a result of extreme anxiety.
Of course there are times or situations when mental prep techniques aren't able to place us in a fully calm state but such techniques will still envoke calmness and allow one to better cope with the situation and endure.

Discovering what the best methods are for an individual and for various situations takes time and experimentation to determine which methods are easiest to employ and are most effective. Once the best methods are discovered, it is well worth the time invested and will greatly serve one in the future.
What are your mental prep rituals?

A Scarred Life

Throughout the day while at my desk, clothes shopping, getting ready for a function, or even just lying in bed I'm reminded of what once was and what threatens the future by a single scar and it's never healing abnormality. This single spot as well as occasional tingles along and under the scar lines will never let me forget. On occasion, I still have the sensations of an active stoma and am urged to reassure myself that my reversal wasn't a dream, but remains reality.

Of course I have the typical, vertically long slice down the middle - from the groin to the rib cage. And after repeated slicing in the same line,  it has become rather deep as it curves around my belly button. Accompanying this is a scar on each side of the abdominal length reminder of the previous stomas - one in the shape of a hash mark and another a deep single slash with it's own peculiar complication presented as a knob at the end that never truly heals itself.
This spot is a constant source of irritation and serves as a constant reminder of what I've endured. The knob presents itself as if a stitch is lodged deep inside, forever trying to work it's way to the surface to be released from the captivity of the body. Alas, whether a stitch is embedded in my skin or not, there isn't any hope for discovery. This pustule like spot becomes irritated periodically and collects within itself a clear liquid that pushes its way to the surface that vexes the skin until without conscious act, my fingers are led to this knob to kindly relieve the area of its' building pressure. Once it's devoid of the liquid, it lies flat again against the skin and maintains a slightly open red dot that taunts me to attempt to discover what may lie beneath the skin. The few times I have relented to the taunting of this red spot has been painful as I dug under the skin as deeply as I could allow myself with needles to attempt to catch what may be the cause of such irritation without any success. This spot is also indifferent to hot compresses and ointments. The only time this spot has begun to heal was when I tanned for a month's time, the heat acted to dry out the gradual collection of liquid. However, after tanning completed, the collection was again started. Like most of my health, this also is an anomaly that my doctor and others have been unable to explain.

And then there are other scars that aren't as blatant although continue to serve as visible reminders. Multiple scars on my chest from the repeated placements of central lines and their stitches, a scar on my lower abdomen from a drainage tube, and countless scars on my hands and crook of the elbows where IVs were inserted and needles for lab draws. I do worry about future accessibility for IVs and needles though from all the scarring.

I know some are deeply bothered by the presence of scars and view scars as bodily imperfections and reflections of one's self worth. I don't subscribe to this perception or interpretation of the role of scars on one's life or meaning and I urge you to refrain from such a perception as well. The visibility of my scars have never been bothersome to me, I rather view them as a badge of survival, an so it's never mattered to me when others see or even comment on my scars. In fact, I find it a bit humorous when strangers react to seeing such a scarred up abdomen as they try to ascertain what the cause is of such scars.

It was this attitude that kept me from ever considering products and procedures to lessen the scars. However, when my gynecologist asked to complete a series of laser procedures on my abdominal scars to allow the scars to lessen in color and size as part of a research study, I consented to undergo the procedure. The laser procedures were short repeated sessions and the heat of the laser was uncomfortable, although not unbearable. The heat was most bothersome on my freshest scar, the deep single slash with the slightly open knob. Each session let my abdomen red from the laser's intense heat and it was a display of gradual changes. I was surprised at the results, not only did my scars reduce their pink or red hues and blend in more with the surrounding skin, they also became less puffy and less deep so that they're more level with my skin. I wouldn't have sought such a procedure if it hadn't been part of a research study at no cost to me but I'm glad I had the opportunity to benefit from the laser procedures.

With or without treatments to reduce the visibility of scars, don't let your scars hold you back. Scars don't define us and aren't a reflection of negativity, imperfection or damage to the body. Rather, they are merely reminders of what has been survived. And that, indeed, makes a pretty awesome, empowering statement of self.
I leave you with quotes that speak to the strength of a life with scars.

• Scars remind us where we've been. They don't have to dictate where we're going. - Agent Rossi, Criminal Minds
• Out of suffering have emerged the strongest souls; the most massive characters are seared with scars. - Kahlil Gibran
• In nature, nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways, and they're still beautiful. - Alice Walker
• A pearl is a beautiful thing that is produced by an injured life. It is the tear [that results] from the injury of the oyster. The treasure of our being in this world is also produced by an injured life. If we had not been wounded, if we had not been injured, then we will not produce the pearl. - Stephan Hoeller

Numbing

The ostomy world lost another inspiring individual with great vision and drive, who helped start a revolution of education, support and life preparedness for youth with bowel and bladder dysfunction or disorders - the Youth Rally.

In our world of chronic illness it seems that life is so ever short and although these losses aren't on a regular basis, it isn't all that unexpected either. We have a lot we are contending with for survival and quality of life - most have several diagnoses competing for treatment. Whenever one deals with the GI tract, there's always a threat of malnutrition and dehydration interfering with one's daily tasks, one's health, one's life. This is why it's so serious of an issue for so many of us - our bodies are in a battle to survive when they aren't working properly to obtain life's necessities. Cancer seems to be another common sideline occurrence, whether it's within the GI system or elsewhere. And of course for those of us with FAP, cancer's always a constant threat. This is not intended to scare or stress anyone, only for others to better understand the daily risks we live with, why it's not a walk in the park. Because of being under attack so frequently, we each find our ways to cope and we must or we'll be eaten alive emotionally and mentally as well.

When people are faced with many losses of life, we tend to start coping by compartmentalizing and dissociating from the event, essentially numbing ourselves. This is extremely common and necessary for anyone working the medical field and it's a mechanism I've grown quite accustomed to utilizing.
Throughout my life, since I was a few months old, I've been surrounded by death. I have lost more family and friends than I care to recall. And working in the medical field, I've lost more patients with chronic or terminal illness than I can track. Although I am saddened by the death of anyone I know, I don't grieve for everyone the same way. When I've lost very close friends and family members, I grieve heavily for months, even years but when it's someone I'm not extremely close to or I have a professional relationship with, I pay homage to their life but there isn't really a grieving period allowed. When my grandfather died, I couldn't speak of him for close to 2 years without crying. When my aunt died, all I could manage to do was attend work and school, every spare moment I had I spent with my family for months sharing family stories. When my best friend died, I didn't sleep for over 24 hours and cried incessantly with his father for close to 6 hours.

I can't menally afford to grieve so deeply for everyone though and that's when the mind protects itself and compartmentalizes experiences. And thank goodness for the mind's own capabilities! I believe this ability of the mind also lends itself to the ability of those with chronic illness or in the medical field to often have warped perceptions of life and morbid humors.
So please don't be harsh on someone if they appear to not be affected as deeply by a death as another person, it may be all the person can manage for they're own surival.