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.

Stressed Indeed

Living with chronic illness almost mandates that one becomes accustomed to a high level of stress. Not only are we dealing with the physical stress of health issues and the stress of worrying about our health, we also have the stress of how our health is affecting or interfering with the other aspects of our lives.

I think I have a naturally high stress level, I can't think of a time when I'm not experiencing some type of stress - whether it's about my health, fears for others, or related to my responsibilities. I've always placed a large amount of stress on myself since I was a child, I was beginning to develop ulcers when I was in the 3rd grade! Sometimes when I look back on my life or focus on the stress I've endured, I'm amazed at how I've coped with it from such an early age. We all cope with stress differently and hopefully we improve our skills over time.

I don't know how I coped with stress before adulthood, and I'm not really even sure how I cope with it now. It's just been part of my life. It's similar to the concept that I don't know what it is like to feel good anymore, this is my normal and I don't know any different. Prior to adulthood, I maintained the attitude that I was completing what was required of me as I didn't view or believe that I had any other choice myself. I was under the care of my parents, who were making my healthcare choices for me. I gained my strength from my parents and had faith they were making choices in my best interest. I don't know how I deal with stress any differently now than I did 4 years ago when working full time at my 1st post-graduate job was so stressful on my body that I began to really question my health's durability for full time work. Now I work full time with a different company and at times I also do contract services on the side without any negative effects on my health. Although sometimes I worry that the mounting stress will begin to affect my health again.

Through our trials and errors we discover little tips and tricks that work best for us to cope with stress or fears. To reduce stress associated with responsibilities I've learned to keep a to-do list so that I'm not stressing about trying to remember all that needs to be done, to organize information to be easily accessible when needed, and to maintain up to date lists of upcoming deadlines. When dealing with health stress, I employ several old fashioned stress reduction and relaxation techniques to attempt to regain calmness. During health procedures or tests, I complete deep breathing, progressive relaxation, positive imagery, focusing, mantras, and I keep a special stuffed toy with me for added comfort and sometimes listen to music. When I'm feel stressed by overwhelming fears or stress of how my current health is or may become, I lean on my parents or spouse for support - for physical comfort, reassurance and to voice my concerns - as well as deep breathing or progressive relaxation. And many times I eventually collapse with exhaustion after pouring my fears out verbally and through tears, a much needed emotional release at times, leaving me feeling much more refreshed the next day.

There are times that stress can be good for us, it can serve as a great source of motivation. When stressed, we may become motivated to stop procrastinating on starting or completing tasks, set new goals, change our attitudes or behaviors. Stress can be trigger we need to finally start something we've been meaning to tackle and achieve.

Stress all depends on our mindset and how we view the stressor. We must decide how we're going to approach stress and discover how we best manage the stress. Only then can we let go of some of it or even all of it, to enjoy more of life. What stress management skills have you learned?