Away from Home

For the Memorial Holiday we went on a camping trip and while preparing for our holiday getaway there were many concerns to account for in an attempt to allow for the most enjoyable trip.
Anytime I want to participate in physical activities, particularly away from home, I must consider a number of factors such as food, restroom access, breaks and the amount of physical activity. Each of these contribute to my health, severity of bothersome symptoms, and level of activity.

In Evils of Food, I discussed all the concerns surrounding food and how food affects my daily life. For our camping trip, I tried to stay away from just the usual camp foods of hamburgers and hotdogs as these foods are very greasy and almost always cause a SBS flare up. One evening we had grilled chicken and vegetables with a rice mixture. But even for this healthy meal, I still had to consider which vegetables to have as some vegetables such as fried potatoes are typically upsetting. I relented for one of our  lunches to having Mexican food. I was able to combat the SBS flare up into a mild flare up by taking an extra Lomotil  in the late afternoon, being careful of the timing in order to prevent an adverse side effect of extreme constipation if taken too late in the evening thereby altering the usual satisfactory effectiveness of my daily Lomotil on the following day. If I took an extra Lomotil too late, it would still be in effect the next morning thereby altering my whole medication schedule for the next day resulting in too much binding. Later that evening we made Smores, I had to limit myself to 1 Smore as another one would have pushed my intestine over edge especially after a Mexican lunch.

Restroom access is an absolute concern for any outing away from home.  In Access Denied, the ongoing concens and fears of being denied restroom access and restroom restrictions were discussed. When we reserved our camp site, I made sure to reserve a site that was close to restrooms in order to reduce wait time when a restroom was necessary. Even with having a restroom within 100 - 200 feet, at night I had to drive to the restroom in order to arrive in time and to reduce the amount of physical activity that inevitably increases SBS.  At times I even considered sleeping upright in the car parked at the restrooms during the nights but after 3 trips a night, I was able to endure until morning.

I also have to take care to watch my activity as movement increases my SBS and is futher complicated by restroom accessibility. There were many nature trails and hiking that we could embark upon and that I would have loved to have completed, but once again I had to mind the amount of activity and the proximity to a restroom in order to prevent SBS and accompanying misery. Even to go for a swim takes careful consideration of the timing of eating, walking to the swim area and the length of time between preparing for swimming and actually going swimming. The planning and participation of activities also depends on the severity of bothersome symptoms, if only slightly bothersome I'm able to enjoy activities for a longer time period and a fuller range of activities. However, if symptoms are severe then I'm rather limited to sitting still with little food or fluid intake or will be faced with increased SBS symptoms.

None of these concerns stopped me from enjoying or participating in activities on our camping trip, I just simply had to be aware of the possible side effects so that I could plan accordingly which allowed me to make decisions and alter activities to reduce the risk of such side effects for a more enjoyable trip.

I can't think of any activities that I haven't been able to partcipate in in some way because of my health.
Knowing our bodies and how they react to varying situations is vital for our survival. By being able to predict based on previous experiences, I'm able to make decisions to allow for optimal activity participation and comfortability.

The Non-Sick

I'd group people into the following categories to describe their frame of reference for understanding chronic illness and empathy.

1. The Sick. These are people with chronic illness, not with bowel disease though. This group can relate to us with bowel disease because they too understand chronic illness. This group is usually very empathetic toward others with health issues and have a medical understanding.
2. The Bowel Sick. This is our group of people, all with some bowel disease. We relate to each other better than any others with health issues. Again, we tend to emphasize with each other a lot.
3. The Non-Sick with Empathy. This group doesn't really have any health issues but sincerely want to understand what we go through. They may or may not have any medical understanding, but are willing to learn. Someone with empathy doesn't require medical knowledge in order to empathize and often have tendencies to have a basic understanding simply due to their inclination to empathize and imagine what life is like for someone with illness. This understanding also tends to be present for not only physical but also emotional symptoms and effects.
4. The Non-Sick with No Empathy. This group doesn't really have any health issues or experience and don't really care to sincerely understand or learn about our conditions or that of others. They may inquire but it is usually due to etiquette or to satisfy curiosity.

 I don't really have any patience for the non-empathetic non-sick and dealing with this group is highly vexing for me. I don't mind and even typically enjoy educating others, answering questions and helping to better understand and support others in their lives. But when a person doesn't have any interest in such things and only feigns interest for their own hidden benefit, I don't really care to answers questions. I don't want to be a part of their games or help them in their games. I also don't really care for such people to pry into my life and know details of my health or my day to day health and symptoms. So it's no surprise that I have very little patience and a short fuse with such people.

I don't have the energy nor the patience to teach an adult how to empathize or how chronic illness affects one mentally, emotionally as well as physically, especially when it's not a sincere interest. I'd rather maintain my privacy and steer clear of my health as topic of discussion. I've encountered several people like this and I don't trust individuals with such behaviors. There are people who will use knowledge about someone's health and chronic illness to manipulate the person, others involved with the person or a situation with such personal information. We must especially be weary of this with employers. Recently I had an individual ask about my PTSD and they didn't understand how I could have PTSD now when my physical health has been stable. This person was also trying to use my health as a tool for religious debate and manipulation. So I'm confident that this person belongs to the last group. It doesn't take a psychologist to understand basic tenants of PTSD as long as they know a summary of what PTSD is.
 Simply, PTSD is the mental effect of a traumatic event causing an individual to have depression and negative stressful symptoms that are triggered by the trauma experience being relived. Such symptoms include night terrors, severe anxiety, fear, flash backs, emotional numbing and avoidance. Most people have a basic understanding of PTSD due to the prevalence among war veterans. Therefore, I find it hard to believe that an educated, aware adult doesn't have any reference to PTSD to draw from, especially if that person has a capacity for empathy.

My PTSD symptoms have subsided in frequency and severity over the years due to counseling and medication treatment. I don't believe that an individual ever truly stops having PTSD, just that symptoms can improve as well as better coping mechanisms may be learned and utilized. Although my health is fairly stable now and I don't have as many regular invasive tests and procedures, when I am placed back in that medical environment and those situations I begin to experience those same PTSD symptoms that I've had before although now I'm better equipped to cope with the situation so that the symptoms aren't as severe or debilitating as they were previously. But I'm never rid of it all and sometimes without provocation I begin to have symptoms again. I have to be cautious of what I watch, read, listen to and even what I think because I am easily transported back into time to any one of those traumatic medical experiences and am reminded of it all again. If I'm not cautious, I'll quickly be reliving the traumas. I'm so in tune with the pain and those memories are etched into my mind so deeply that seeing or hearing others' pain is physically felt on my body.
I also believe that one is never truly free of depression completely. A person may stop having depression but I've found that after having depression, one is much more susceptible to have depression again at a later time when under duress. I've found this also occurs with suicidal tendencies. Once a person has become suicidal, even after no longer being suicidal one is much more likely to experience suicidal ideations when under duress. It's as if once that those doors are opened, they're easy to open again even if not intentionally.

I acknowledge that these can be difficult things and notions for others to understand.    Chronic illness runs in my family but it's still hard for my parents to understand how deeply I've been affected by my health even though my parents are better able to relate than most. My husband has a hard time understanding my morbidity, how warped my mind has become due to such traumas. Yet they empathize and support, they listen and they show that I am understood and accepted. A close friend with similar health issues probably knows me best as he better understands the mental effects during his years of medical traumas than anyone else I know and is as warped as much if not more than myself. Most people have capacity for empathy and if they don't you are better off befriending someone who does. Without empathy, there isn't room for a true friendship - only a one sided benefit.

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?