The Worry Wart and The Carefree

Twice in one day I had two different people tell me that they worry about me and my health. I appreciate the care and concern of others but I don't hear the literal words" I'm worried about you" often. So infrequently so, it actually sounded strange. And in that moment, I asked myself why and do I even worry about my own health.

I suppose I do worry but not in the conventional way. I don't think about my future health very often. The only time I truly feel like I worried about future health was when I had my ostomy and was desperate for a reversal. I thought and worried about my future health and hope for a reversal opportunity everyday during those six years with an ostomy. I think of death often, however, the only concern about death I have is pain and outliving my husband. Otherwise, I feel ready for my time. I don't recall worrying about future health even during my worst struggles to survive. I didn't have the energy or strength to worry. And then it just...became normal.

I find myself worrying most about my activity ability. I worry days, weeks, even months ahead of time about activities I want to participate in but am at risk of not being able to complete due to how my body may be acting at that time. For instance, I've been worried that  my body will interfere with my hunting chances this weekend and my excursions on my cruise in 8 months!

There's always so many variables to consider in relation to food, drink, short bowel, and restroom access. I must be careful of when, what, and how much I eat or drink before, even up to the night before, an activity or I may suffer from short bowel, cramps, and pain.
But even these worries have become second nature as I proceed with strategizing my day around the activity and demands it will place on my body.

I've said before, I could be considered to be in a place of denial, resignation, or acceptance about future health and health risks. I did, however, request to restart the Sulindac in efforts to reduce polyp growth and aid in management of my degenerative disease within my neck joint. Perhaps I'll even undergo another scope or MRI with contrast in the next few years again! I probably should worry more, but at this point in my life...I just don't have it in me.

Worrying is just exhausting though. We can worry ourselves to death with unceasing focus on our risks. It's all a fine line we must try to balance. Between taking care of ourselves and not dwelling on the problems and risks. Yet most of us don't balance, we lean or fall to one side before we pick ourselves back up to try to walk that tightrope once again.

What do you find yourself worrying about? Are you a worry wart or are you carefree with your health and future health?

Wish List

Do you remember the last time you felt normal, even for your new normal? When those days are so far apart, it's hard to remember the last time you felt good without any symptoms bothering you at the moment. I long for those days. It's usually one thing if not something else. It's rarely ever just a feel good all around day. Such days happen so rarely that my mind doesn't register it for a while, I'm so accustomed to experiencing pain of some sort that when pain is absent, it's almost unrecognizable. Those days are to be cherished. Those days are on my wish list.

I first had this thought this weekend when my eye must have gotten an irritant, that I haven't been able to find, in it as it's been painful, watering and even sensitive to light for 2.5 days now. But little did I expect my wish list to require an adjustment.

I've previously discussed my neck issues that have plagued me all summer long and what becomes the norms of our chronic illness here. This morning I had my physical therapy follow up after doing so well last month prior to a couple neck flare ups over the last couple weeks. I brought more of my medical records for my therapist to read. While discussing my body's inability to absorb nutrients, I learned a few things that have left me devastated today:

1. My body's impaired ability to recover from injury, even something slightly strenuous such as walking
2. The damage to my neck has resulted in a chronic condition and although several factors contributed, the fact that I was improperly performing leg lifts was a large contributing factor. Which means to me, I did this to myself. I caused my neck injury and now I will have to live with it for the rest of my life.

I'm well aware of my inability to absorb and maintain nutrients, I've been fighting this the majority of my life. But I never thought much of my recovery ability or recovery period. It makes sense, it all connects, but my attention has never been drawn to it. With my health issues, my body takes twice as long to recover from anything. Because of this any type of exercise I do participate in, I need to cut in half and double the recovery period in between increasing the amount because my body can only take small amounts of strenuous activity. Again, makes sense. This is why I do well with activity such as Yoga, Pilates, and Tai Chi when my stomach will allow participation.

This extended recovery period also applies to my neck injury. Although I can achieve a decent level of comfort, I'm not able to make all the symptoms disappear. Even during the best week I've had this summer, I could still tell that there was something wrong with my neck, although minimally bothersome. And so, whenever my neck becomes agitated, it will take about a week to recover. This whole time, I expected my neck to recover and that would be the end of it. I never once let myself imagine that I would have a new chronic condition. I'm used to all the negative symptoms that the FAP has caused, I deal with it. I don't know any different and I'm prepared for what's likely to come down the road with the FAP. But the news of chronic neck pain for the rest of my life has thrown me into a self pity crying party as I grapple to adjust to this concept. I wasn't prepared for a new chronic diagnosis and the symptoms. My whole life centers around FAP, not other health issues and especially not other chronic conditions. And perhaps, what makes the coping harder is that I blame myself. If I had never started the leg lifts, I probably wouldn't be in this position or at least not this soon in my life. If I had only known the risks, I never would have started the exercise. I take health risks with my FAP and the cancer returning and I own that. I don't take polyp growth reducing medications and I refuse colonoscopies. But I know the risks I'm taking. I know that when my cancer returns, I'll most likely find out later in the game than if I would undergo colonoscopies again. That's a risk I'm willing to take at this point in my life but I know about it.

It's something else when you don't know the risks and engage in a behavior/activity that causes you great harm because you didn't know the risk or didn't think about the possibility. You become consumed with the "what ifs" and I'm so angry with myself right now. I'm angry and I'm devastated. I'm hurting, physically and emotionally.

And so I'm going to practice what I preach. I'm going to have my cry out but I will do my best not to live there. I will add minimal neck pain days to my wish list. I will cherish the days I feel good and I will recognize those days. I will hold onto the hope for those days. At the end of the day, we need that hope to make it to the next day and a lot of hugs along the way really help too.

Zebras and Ducks

Anyone with Familial Polyposis is already a rare individual. National Registries show FAP occurring in 2.29-3.2 per 100,000 individuals. And if you're anything like me, this rarity is only the beginning of rare health issues.

My GI doctor has for a long time, quite accurately told me that:
 "You look like a duck, act like a duck, sound like a duck. But actually, you're a zebra".
She couldn't be more correct. She tells me that there's no reason I should have the severity of stomach pains, bloating, severe malabsorption, and issues with rich foods that I do. She has stated for years that I would be a perfect case study for medical students because I'm not your textbook example of a FAP patient, what is typical is never typical with me. Everything is the opposite. Doctors check your abdomen for a quiet gut, they actually shouldn't be hearing constant gurgling. However, because I'm always the opposite, my doctor knows that if she doesn't hear steady gurgling from my abdomen, I'm in serious trouble.

It's not uncommon for health issues from FAP to lead to other problems. And it makes sense. With years of malnutrition, other parts of your body are at risk. My neurologist and my physical therapist don't know what caused my bulging disc but my malnutrition issues, past and present, definitely have further complicated my neck issues as discussed in my previous post. Since my last post, my physical therapist diagnosed me with an ALAR ligament sprain and told me this is a rare occurrence and his first in his 20 years of experience. Seriously!? Well, go figures. Why not, that makes a total combination of 4 different issues with my neck - disc, joint, muscle and ligament. I'm pretty sure that the only thing left is for a broken bone. Ha. My neck issues change rapidly, improving and worsening without warning. And due to the constant unpredictability, my physical therapist has joined my GI doctor on the zebra train and now refers to me as a lil' zebra. I can't help but laugh, it's only the truth.

Being a zebra in a world of ducks can be frustrating. You don't really fit in, medical providers don't really know what to do with you, you're more likely to undergo much more testing and procedures in efforts to rule out what normally would be the cause of symptoms, more treatment methods you have to sift through in a trial and error basis. In spite of all the frustration, there is a positive side that the ducks won't experience or contribute to the medical field.

When you are a zebra in a duck suit and you have good medical providers, they can be armed with this knowledge to look for the stripes instead of the feathers, to remain open minded to alternative answers and explanations and to consult more with others in their fields. Consultation is beneficial to all involved - increased understanding, awareness and opportunities for learning and different treatment approaches to complex health issues.
So embrace your zebra stripes. I've learned to wear my zebra stripes as another badge of honor. Nothing makes me smile quite as much as when a medical provider, like my physical therapist, declares "There is nothing normal about you".
Nope, there isn't. And that's what makes me so special, within and outside of my medical issues.

Norms of the Unhealthy

Do you remember the last time you felt normal? How long did your new health changes become normal for you?
I remember the time that I felt normal, it was when I was 9. But don't remember what it's like to feel normal, no recollection...I imagine it would be no pain, eating wouldn't be bothersome, butt burn wouldn't exist but those are just speculations, not memories. Perhaps if I hadn't been so young when my life changed I'd be able to remember. But that's the thing, I don't remember much of anything from before my health changed. I have a few memories of events and people, but not many and they're more like flashes. So it makes sense that I wouldn't be able to remember feelings and sensations.

Trying to remember what normal is makes me wonder how long it took for my current health to become the norm for me. I'm further drawn to this wonderment as I've been dealing with neck pain from a bulging disc, muscle weakness and a joint issue for the last 4 months. The pain from the disc (which has since cleared) and the remaining muscle and joint issues hit me much, much harder than I would have ever expected. I've been experiencing pain daily in my neck. Now, I'm accustomed to my daily stomach pain. But this neck pain, I can't imagine becoming accustomed to. The neck pain varied greatly from dull to sharp, coming and going unpredictably without warning. The constant gnawing and unpredictability left me in bouts of depression and frustration, crying daily for periods of time.  I kept asking myself how in the world did my stomach pain and related symptoms ever become normal for me!? How long did it take and how long would the neck pain take to become normal for me. I was dumbfounded. I don't remember depression and anger over the stomach symptoms, that was directed toward the ileostomy and my medical providers. It's quite possible I was depressed by my health symptoms too, but that's not what I recall in those blurry memories.

I don't think I can fairly say that the ileostomy was ever normal for me, as I've addressed before I never accepted the ostomy but my physical feelings I did come to accept at some point. I don't think twice about having stomach pain or other bothersome symptoms anymore. They're an inconvenience and annoying but I expect them. I know certain foods will exacerbate my symptoms and yet I also know that I also can't accurately predict my symptoms at the same time. And although I don't prefer to feel sick the majority of the time, I'm oddly okay with it at this point. I don't usually feel frustrated or downhearted by it, this is my life. There's no way around it. Now how sad is that!? How long does this attitude take to develop, to be beaten  into everyday reality and acceptance without hesitation or rebuttal? I'd like to know how long this process took to wear me down to such an apathetic view. Is that what true acceptance is? I'm not sure and yet I remain unmoved to rebel, I utterly accept that this is my life and at this point, I know no difference. Either way, I've found a way to cope with the daily struggles and I'm grateful for that. Because the daily struggle of my neck is completely wearing and draining. The last 4 months have been the worst months I've spent in a very long time.

And to think, a muscle, joint and disc issue is what brought me to my knees emotionally after such a long physical and emotional fight with my FAP that I feel I had overcome 6-7 years ago as my health stabilized. Perhaps that's it, with my health stabilized for such a period, I've become unaccustomed to coping with additional health issues. I was no longer fighting daily extremely bothersome symptoms but instead was enjoying the gradual decline and eventual plateau of my health symptoms rather than the ongoing valleys I experienced for several years.
This is similar to a previous discussion  of my difficulty to willingly subject myself to medical tests and procedures now, I've had a sense of freedom from the rigorous course of tests we often are subjected to. I've broken free for the time being and emotionally I can't make myself go back there, whereas previously I was stuck there...what was another test, I was already emotionally raw without anytime to retreat into a post battle wound licking or recovery. But I have now for 7 years, I've been free from the constant barrage of medical harassment. My coping has suffered as such, I'm at a fairly peaceful place in my life and I'll go back to the medical nightmares kicking and screaming before I accept those again as normal.

Anti-Inflammatory Diet Conclusions

The anti-inflammatory diet that I started has come to an end and although I feel better, I don't believe any my results were due to eliminating food allergens. To recall, the anti-inflammatory diet eliminated gluten, soy, corn, dairy, caffeine, sugar, alcohol.

I experienced the same feel good results as when I eliminate junk food, carbs, and starches and eat healthier in general. These are the same results I've experienced many times when watching what I eat by merely watching my calorie intake. When I eat healthier foods, I have less bloating and sluggish feelings. I usually have some increased energy as I'm not feeling weighed down. This also results in reduced stomach pain and cramping. Just like when I just eat healthier, my diarrhea increased on this diet. I attribute the reduced bloating and constipation/sluggish feeling to the increased diarrhea that allowed my gut to thoroughly empty. My gut is emptied is when I feel my best anyway and thoroughly prefer diarrhea to constipation.

 I did mention some sleep improvement at the first week of the study, but my sleep has been erratic since I discontinued Gabapentin for my bulging disc and it has remained erratic to this day. I seem to sleep better after several days of poor sleep where I wake up after 3-4 hours of sleep and remain awake for another 2-4 hours. This cycle leads me to become exhausted and thereby allowing me to sleep well for a night or two.

Although I try to limit my intake of milk and ice cream (due to not liking milk and the calories of ice cream), I do have increased diarrhea from these two dairy products. However, I still maintain that the side effects of milk and ice cream on my digestive system is due to the magnesium in milk and the sugar of ice cream. I've noticed that high sugar foods often result in increased diarrhea and magnesium is a natural laxative. I don't have the same side effects from other dairy products so I don't believe I'm lactose intolerant. 

So in conclusion, although this diet has benefited others I do not notice enough of an improvement for me to continue a life on the anti-inflammatory diet. Instead I will continue my efforts to eat healthy and will enjoy the benefits of healthy eating.

Accepting Help

Sometimes it's hard to share with others when we're experiencing health issues and when we do, sometimes it's hard to accept help from others. If you're like me, I'm appreciative of the offers to help but I don't think about how others could help me. I'm fiercely independently dependent. I'm reliant upon help from my parents and my spouse yet accepting help from others doesn't come naturally for me and even obvious suggestions don't come to my mind easily. Even now during recent health struggles, friends are offering to help me out. Only, I can't think of what one could do to help me outside of just talking to me. Sometimes you have to hit someone over the head to get them to accept help. Perhaps I would be more open to concrete, specific offers of assistance rather than general offers, haha.

In high school when I had a central line for TPN for six months, I couldn't get my central line wet resulting in the inability to take showers. I had to cover my central line with plastic, I then kept several hand towels over my central line and then kneeled over the tub and washed my hair under the faucet. My parents helped me with this usually, although I could manage by myself. It wasn't until shortly before I had my central line removed that the suggestion of going to a salon and having my hair washed was presented. And with that concrete suggestion, I went with it and it was absolutely heavenly. I was able to relax, have my hair washed thoroughly and without pain of my central line pulling with my arm movements. All for a small fee of $5, it was one of the best $5 I spent. And to think, I could have accepted someone else's help six months before even if it was just occasionally intermingled with my own efforts.

A friend of mine is having back issues and was needing help with transport to a doctor's appointment and childcare during the appointment. Again, it didn't cross my mind that others outside of my parents or spouse could or would be willing to go to appointments with me. I simply scheduled any medical tests with my parents' schedules in mind so that one could go with me. Even as an adult, I still want someone to go with me when I'm undergoing any medical tests or procedures. I just simply don't think someone should have to go alone and frankly, the thought terrifies me. I don't think anyone should have to face medical tests or procedures alone.

Despite how hard it may be for us to accept help from others, especially others outside of our health circles, it can be a wonderful thing. Typically, if someone is offering to help you out it's a genuine act of care and they're concerned about you. And let's face it, sometimes we really do need some help...even if it's just a shoulder to cry on.

Healthy Digestion

I've been eating very healthy for the last two weeks and what a difference I've unexpectedly noticed in my digestion, not to mention my waistline. I've been avoiding and at minimum reducing intake of starches, sugars, fats and focusing my meals on meat, veggies and fruits.  Boy what a difference that makes!

I'm not feeling bloated, abdominal pains or what's considered to be "constipation" for me. I'm still able to control my SBS with just one Lonox and engage in my activities. I'm feeling fuller with less food but without the pain and blah feeling of overeating and unhealthy eating. I'm feeling so much better than when I was giving in to all those unhealthy cravings. I wake up and feel like playing in the hills, not sitting on the couch holding my stomach because it's uncomfortable or painful to move.

Everyone should talk to their doctor before making diet changes, especially as some of us with GI issues have a difficult time digesting fiberous foods, specifically vegetables. I've been fortunate that vegetables have never been a problem food for me, even when I had an ileostomy. My mother though is plagued with intestinal blockages regularly, even when carefully selecting and chewing her food choices. Even too dry meat causes a problem for her.

Bottom line, it's important to consider our food choices to make better ones for ourselves. Yours may be different than mine, our bodies are similar yet different with FAP. But if you're having some negative symptoms, try some changes out with your doctor and see what happens. I've been too stubborn to make changes before with food and medications but those changes have always proved to be the better choice for me. I hope yours do too.

Changing it Up

Life is an ever changing being, what once was may not remain. I've experienced far too often and far too infrequently the unexpected. We never know how we will be tomorrow or a few years down the road. Time changes us and it's no different for how our body and systems are affected. Seems like every so often my body goes through a cycle of changes on how it operates. S

 The first major unexpected changes were after my last surgery as over time my body started to adapt and I was better able to tolerate food and a larger variety of foods. In Evils of Food, I first discussed food and what once was an excruciating experience gradually returned to an enjoyable experience, for the most part. Still though, there are times when food remains to be the primary contributor to flare ups that usually last for just a day or a night and I'm able to return to normal activities the following day. But then again, this can change also. Foods that are normally upsetting cycle and are not upsetting for a period whereas "safe" foods become bothersome. Periodic changes make it difficult to know what to expect and how to resolve the issue. A few years ago, I went through a period where any food other than raw vegetables and fruits were very upsetting to my stomach and system. Any other foods caused severe abdominal pain and cramping. This lasted for a couple of weeks and my system seemed to reboot itself and returning me to my regular diet.

I've experienced cycles in how my body reacts to medications as well. Through a Medication Mix Up I discovered that Lonox, the generic for Lomotil, was once again an effective medication for my SBS. Yet in just over a month, my system changed again and I required an increased dosage of the Lonox. And then, just a month or less later I was able to reduce the dosage yet again. I'm nervous to find out how long the current effectiveness of Lonox will last as I'd prefer not to return to the higher costing brand name Lomotil. Only time will tell.

I'm currently enduring another change that has yet to resolve itself. Due to the SBS, I usually am up during the night to use the restroom 2-4 times. And although this may seem like a lot to others, it's actually preferable for me. The last week or so I've been sleeping through the majority of the night without any restroom use. Because my intestine isn't being voided, my intestine is slowing to an uncomfortable pace leaving me feeling bloated and in pain until late towards the next day. I'm not sure the reason for this sudden change. I suspect it may be related to reducing calorie intake as I'm eating healthier or perhaps I'm not receiving enough fluid intake although I drink when I'm thirsty except  I try not to eat or drink within a couple hours of bed though. Drinking too close to bed causes severe pain from abdominal cramps all night long and is very miserable for me. Is it the foods I'm eating or the amount of or timing of fluid I'm drinking that needs to be altered? Or perhaps it's just my body's way of saying it needs to be flushed out? No clue. As I experiment with altering my habits once again to accommodate my body, I'm hopeful I'll find the solution or my body will resolve itself as it usually does over a period of time.

We're never guaranteed that life will remain the same, we're always faced with challenges. And that isn't a bad thing. The status quo becomes stagnant, stifling. Challenges break us from the mold, we're forced to find new solutions, fight new battles, enjoy new blessings, learn a new way. We strive, we strengthen, we change along with life.

Phantom Pain

I hate when I have phantom stoma pain! I just hate it. I've lived without an ostomy for over ten years now and I still getting the feeling that I still have an ostomy, stoma and all. Last night I spent half the night in a shallow sleep rubbing at my last stoma scar because it felt like I had raw skin around my "stoma". My sleep was shallow enough that although I didn't fully wake every time I touched my scar, I did stir enough awake to realize what was happening. And the most frustrating thing is even though I could tell what reality was, the phantom pain wouldn't stop so every so often it would hit me. I even was having dreams that I still had an ostomy. Had I been in a deeper sleep I would have truly believed I still had an ostomy, it was that vivid of a pain.

This isn't a one time occurrence unfortunately. Every few months my body reminds me what once was. As if I could forget anyway!  In high school during a rough health patch I dreamt I had an ostomy still and it was so vivid that I was an emotional wreck all day, I even awoke in a panic crying. I was terrified that my straight pull thru would be taken down and replaced with an ostomy once again. That all I had worked toward had been for nothing.

I've had other phantom pains before too. I'm reminded of the pain of a central line, I can't even tell you how many I've had it's been so many. The worst was during that stent in high school when I had a central line for six months due to having to be on TPN because I wasn't allowed to eat or drink for months on account of a hole in my intestine. I finally had the central line removed when it was literally hanging by only one stitch, the rest had pulled free and were no longer there. Oh that was a constant pain, not sharp but a background pain that you couldn't forget about as the central line was slightly pulled and released with movement. To this day I still have that pain if I touch or something irritates those scars or if I start to think about it too deeply.

The same happens with my arms and hands where I have blood drawn or IVs placed. Thought or touch rings those memories and they're reawakening with phantom pain of needles.

The pain we've experienced is imprinted upon our bodies and our memories without realizing it or our consent. We are not to forget the trials we've endured. Our bodies can take us back to that moment without notice in a heartbeat. Perhaps that's not completely bad though. We remember and so we can join with others and help others endure their trials as well.

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?

Life Lost

The loss of life isn't anything to be taken lightly, whether it's naturally or by actions of one's self or others. I've shared before in previous posts how chronic illness warps our minds and perception, even in the realms of death. I was reminded of these effects when I heard about Mindy McCready's suicide last week and listening to the negative outlash toward her decision, I felt defensive of her. She endured a lot of pain and difficulty during her life, she was in a spiral of despair and although I cannot speak for her motives, I am not first led to believe her decision was of a selfish nature as many label anyone who has suicidal ideations, attempts or completion.

One thing I've learned during my journey with chronic illness and my time with friends of similar circumstances, is that we really can't judge what others are going through. This is primarily campaigned when discussing invisible illness but it's also in regards how life affects one's mental health, especially when chronic illness is involved. One of my best friends committed suicide, the pain of his chronic health issues became too unbearable for him. Although I deeply grieved for him, I couldn't be angry with him for his decision. I understood his decision too well, I too experienced health misery so great in my life that in a spiral of depression and pain, I longed for nothing more than peaceful death and for several years was suicidal myself. It is this personal understanding that I'm in favor of euthanasia, if solely of the individual's decision without manipulation or exploitation. I am not of the mindset that we are only given things in life that we are able to handle, there are experiences that way too heavy on the body and the psyche that are unthinkable and far too damaging. Those who are able to survive such experiences, I applaud them. However for me, there are several events that I would rather seek that eternal peace than to endure such experiences. Each person is different and so is each experience - but we can all empathize with the turmoil, the despair that another feels if only we try. Instead of blaming someone for their decisions or their desired intentions, let us be there for them and help them through the darkness the best we can.

I do not say such things to cast gloom on the hearts of others, but merely to remind us of empathy for the suffering others experience and to bring insight on their decisions. There are many examples of individuals who commit suicide as a manipulative exploit, to hurt others and for their own selfish gains. But there are many who are simply so hurt themselves or threatened with heavy pain - physical or psychological - that the only peace the individual is able to see is within death.
We need to support one another and any individual with suicidal ideations or plans most often are receptive to support, if only asked about what they're experiencing. Sometimes we miss the signs of how deeply hurt someone is, how close they are to the edge. We cannot blame ourselves if we miss those signs, but we can arm ourselves so that we may be better prepared.
Please visit Suicide Awareness Voiced of Education for information on suicide, warning signs, and ways to help and support someone experiencing such deep turmoil and perhaps together, we can bring more back from the edge.

SBS SOS

Last night was awful. Actually, last night was fine it was early morning today that was awful. I had another episode into the work day. I have an episode at least twice a month on average. These episodes consist of my SBS going haywire for several hours causing me to start debating my every move, moving like a very slow hunchback or a speed walker on actual speed, and forcing myself not to scream out loud. These episodes typically are brought on by food upsetting my system, whether it's overeating or eating foods that are too rich, fatty or greasy. And sometimes I can't identify a trigger for it, all I know is my body is screaming SOS even if I'm not letting the screams out.
This time was the worst one in a while. It seemed to last longer and hurt more. I was literally running to the restroom every 5 to 10 minutes and if I tried to hold off then I risked a messy consequence. I hate when my body won't allow for a postponed restroom trip, it pretty much only occurs during my sleep and even though my husband understands and doesn't care, I'm still embarrassed when I have to run back to the bedroom for clean clothing and he wakes up to hear me rummaging through the dresser drawers in the dark or I have to wake him to ask him to bring me clothing. I hate him seeing me like that, I shouldn't be. It's beyond my control, it's not anything any person enjoys or wants and I take precautions for myself to avoid such occurrences but sometimes precautions just aren't enough. By the morning my skin was so raw and swollen the thought of having to use the restroom again pained me and while trying to get ready for work I debated every move and required my husband's help so that I wouldn't bend down or walk further than necessary. Any movement agitates my system and stimulates my SBS to occur that second instead of my 5 minutes later, so I have to stop moving and stay seated as long as possible.

Usually my episodes end before I have to get up the next day. They may last all evening and into the night but typically are over once it's time for a new day to start. Other times they may last during the day, which is when I require my wheelchair if I'm away from home. If I don't have my wheelchair then I'm a nonstop speed racer until I can get to a place I can sit or lie down, I've been known to leave friends and family struggling to keep up with me during those times. I have to though if I want to start curtailing the episode. Sitting helps the most. Lying down doesn't really help unless my legs are elevated, causing my torso to become bent and thereby forcing my intestine to have some more loops or bends to it so that it can start to slow down.
The occurrence of such episodes has in general reduced over the years. During the years following my "healing" surgery in 2001, these episodes were frequent and for about 6 months to a year, almost nonstop. My doctor asks me every few months if I want to return to have an ileostomy because of my SBS and episodes. I continue to tell her that it's not a severe enough problem for me to consider returning to having an ileostomy. Having a flare up even once or twice a week is worth it for me. I'm grateful that ostomies save lives and improve lives for so many and is an alternative option to death. I'm so grateful for the advances in ostomy care and appliances to make living with an ostomy more comfortable and convenient.
I never felt feel free or myself when I had an ostomy. I think that's because I never truly accepted the ostomy or that I was meant to have an ostomy, not permanently. When I was 10 I was told that my temporary ostomy would now be permanent as there wasn't enough rectum or tissue left to for an anastomosis anymore after all my complications. I never believed my surgeon, I also didn't trust my surgeon and hated him with all my 10 year old might, so I wasn't likely to trust his word regardless what he told me and my parents. Besides ignoring my parent's concerns and questions, ignoring my symptoms and my voiced concerns, and royally screwing up surgeries, he couldn't even remember if I had 1 or 2 kidneys, if he removed a kidney or not, and if I did have 2 kidneys if they both worked! My parents and I still don't know why the topic of my kidneys even came up during my 1st year of surgeries. He just randomly told my parents one day that I was missing a kidney, then later said he removed a kidney, and then later said I had both kidneys but one didn't work, and then later said I had 2 working kidneys and admitted he couldn't remember. WHY was this person a surgeon!? My parents though, being new to having a child with medical issues, were too naive at this time in the medical field to push the issue more. Looking back with the knowledge and understanding my parents have gained, frequently stated they should have demanded a different surgeon and sued this surgeon for malpractice and incompetence because he shouldn't have been practicing. Okay, rant over...for now. 
I held on to the belief that one day I wouldn't have an ostomy any longer, one way or another. I prayed every day, frequently, for a miracle. I pleaded to die, like so many times I should have died that one year, if I couldn't have my ostomy reversed. For 6 years this went on until one day my doctor told me that after reviewing my annual colonoscopy, it may actually be possible to have my ostomy reversed. She warned me that it was not a guarantee and may fail but I could try it if I wanted to proceed with the attempted reversal surgery. I didn't have to consider it, I immediately stated I wanted to try it. I told my parents to tell me as soon as I woke up from surgery if the reversal was a success or not. When I was returned to my hospital room, I struggled to keep my eyes open through the hazy daze of anesthesia and Demerol from the surgery, terrified that the reversal didn't work, I looked over at my parents with half opened eyes and gathered enough strength to make a thumbs up. The sign to my parents that I wanted to know now what the outcome had been.

I refuse to talk or move my head when I have an NG tube. I don't care what the circumstances are or how painful it is to remain in an uncomfortable position for days. It's just like when I have an IV - no one is going to get me to bend that arm for anything because I will take every precaution to make that one IV last my whole hospitalization. 

I was terrified that the reversal wasn't possible and finding out that it wasn't, I was afraid I would go into hysterics causing severe pain from sobbing uncontrollably and thrashing about fresh from surgery. I was afraid of the anxiety of not knowing for hours, left wondering as I drifted in and out of consciousness until the anesthesia wore off enough for a more lucid self. But I risked all that, I couldn't wait to find out, hopeful it all worked as I so whole-heartedly, fervently believed it would for years. My parents saw my gesture and told me what I longed to hear, "It worked". I relaxed and with a weak smile, closed my eyes and went back to sleep.
I've gone through too much since then and my health has made a practical 180 to what it was the year after my reversal surgery to give up on my straight pull thru and return to an ostomy. My health doesn't warrant it at this point. And so I keep my resolve to endure the SOS of my body during an SBS episode, the occasional emotional release of pent up pain and mental exhaustion and I remember that in a few hours or a day, it'll be better, my life will resume and I'll be alright. And it always is.

When your body is sending out an SOS, listen to it and follow the care recommendations for it and reach out to others to support you through the crisis. Whatever the outcome, such steps will help and you'll get through it one way or another.

Back Me Up

The majority of the time I am filled with thoughts of gutting myself to relieve stomach pain. But on occasion, I think about gutting myself from the backside as well to relieve back pain.

After five abdominal surgeries, my abdominal muscles became severely weakened and were no longer able to provide proper support to my back. In high school the back pain progressed to the point that when I leaned over, my back would give out and I was unable to lift my torso up and straighten myself again. After  consultation with my GI doctor I was referred for physical therapy to re-strengthen my abdominal muscles to relieve the back pain. I completed my physical therapy sessions with great success.

Through the years though and after two more abdominal surgeries, I've noticed my back beginning to pain me more frequently. It is typically brought on after the initiation of severe stomach pains from bloating and cramps. I believe this triggers the back pain as excessive pressure is placed around my torso. So instead of coping with one pain, I find myself literally surrounded with pain battling two fronts. I've realized with repeated experience that in order to prevent or at least delay or reduce the occurrence of back pain, I must carefully consider my previous, current, and future food intake. As I discussed in Evils of Food there are a multitude of variables in relation to eating that affect my daily health and life. The stomach pains require sitting or lying down for relief, unfortunately this does not provide the same amount of relief for back pain.

I've often considered returning to physical therapy and perhaps that may be in the near future.