Post Remicade - Part 2

Posted by iKan2

So, since I decided to give the two shoots in my thighs, I gathered everything together and took a seat beside the vials, the syringes, and the alcohol wipes. I figured it would be easier to grab a chunk of my thigh muscle so I could stick the needle in to it.

The first step was preparing the syringes. As you've seen in the movies or on television, I soon discovered that there's a good reason why they always show people filling a syringe with the vial of medicine upside down. First, one of the vials was too tall for the needle to reach the liquid, so the only way to get it to the top effectively was to turn it upside down. Plus I soon realized that is was also important in getting the syringe full of liquid instead of air. So with both syringes full and all of the excess air squirted out of them, it was the moment of truth.

Without thinking about this too much, I proceeded to sit down and rip open one of the alcohol swabs. I chose a location on my right thigh and pinched it between my thumb and forefinger with my left hand. I put the needle to my skin and begin to push. As you might realize, this was the "wrong way" to do this. Thinking back, I should have stabbed it into my leg, but, like I said, I wasn't thinking too much about what I was doing in hopes I wouldn't recognize what was going on and begin to freak out. It was weird, as I pushed, my skin dimpled in refusing to let the syringe pierce it, at least until the force was too much and it slid into my thigh. You know that part didn't even really register, it was only as I begin to push the plunger on the syringe down and begin the injection process did it hurt. Then it hurt a lot. I immediately thought to my self, "Oh my-freaking-god, this totally sucks." The pain was pretty intense.

I was instantly swept back to when I was 9 or 10 and the summer that I contracted  the "kissing disease," mononucleosis. At the time we were still using the Tricare facility near home for all of our health care. When I got sick, my Mom took me there, where a blood test confirmed the diagnosis. The first step in treatment involved an injection of penicillin. I remember the doctor pulling out this huge stainless steel syringe and filling it upside down with the penicillin. He had me drop my pants and, you guessed it, proceeded to give me the shot in my right thigh. At first he jabbed the needle in, and that was okay, but when he shoved it in down to the hilt of the syringe, I recall my Mother saying, "He's going Doctor!" Everything got fuzzy and I turned pale white. When I regained consciousness I was leaning against a wall on the examining room bed I was sitting on and I was covered in a cold sweat.

So I finished the injection, and with my thigh throbbing I stood up. I had already broken out into a cold sweat and I was already feeling a little dizzy. So I made my way over to the living room couch and laid down, and while I didn't blackout I was woozy for a moment.

After a few minutes, with my head a little clearer, I  went back to my chair and repeated the process with the other syringe and the other leg. After the second injection, I was a little better prepared and the needle went in quicker and the injection didn't strike my system so violently. However, after both of the injections I was still feeling a bit woozy, so I retired to the bedroom to close my eyes for a while.

While I'm sure that anywhere I would have given myself the injections would have hurt like hell afterwards, I realized that having both thighs throbbing with pain, sort of made walking a bit of a challenge. As you can imagine, it's kind of hard to limp with both legs.

Looking back, I probably shouldn't have been so gung-ho  on shooting myself up with these drugs. Again, my thinking was they arrived from my Gastro after the treatment, so she must have meant for me to use them. It turns out though, that it was all a mistake. The medicine that I received was, in fact, the pre-medication that I'm given prior to my Remicade treatment. Some how an extra order was made to the VA pharmacy and they were dispatched as ordered.

In the end, I guess it's true "what doesn't kill you, makes you stronger." I now know how to give myself an injection, so I can start giving myself my B-12 shoots as prescribed. Before I was always dependent on a nurse at the VA to help me out. Although, when I do try the first one, I think I'll try for my upper left arm instead of my thigh. While it was nostalgic to revisit my penicillin  injection of long ago, I'd rather not return there anytime soon.

Post Remicade - Part 1

Posted by iKan2

Last Wednesday I had my last Remicade treatment. In retrospect they now almost seem mundane, but I know that each treatment holds the potential for complications, a negative reaction. So far I've been lucky, and last Wednesday was no exception.

While the infusion is not terribly uncomfortable, I'd have to say that the evening after the treatment (which are usually done early in the morning and finish up around noon) usually suck. I guess as your body absorbs the Remicade it takes it's toll on your immune system. For me, I just sort of feel off. Maybe like you get when you're recovering from the flu. I usually get fatigued, my voice grows a bit hoarse, and I just feel a little shaky. And for some strange reason my thighs usually ache. I'm not sure if it's the 4 plus hours lying in a hospital bed or some other strange interaction, but my legs feel crampy, maybe something like they might feel after a vigorous exercise. The day after I still don't feel normal, that usually takes about 36 hours.

So on Saturday I get a weird envelope in the mail. I'm not really expecting anything, so I'm kind of baffled what it might contain. After ripping it open I immediately see a couple of syringes, then I see some pharmacy bottles with the familiar VA markings. The bottles contain vials of medicine, Diphenhydramine and Methylprednisolone Sodium Succinate. As I'm sorting through the envelope, I check to see what doctor sent me this medicine. Sure enough, my initial suspicion is confirmed, they're from my Gastroenterologist. I read through the instructions for the medicines and I see that they are both used to treat allergic reactions. I know from my treatments that they prepare you for a Remicade infusion with Benadryl. So these must related to my last infusion.

I put them aside and stay busy around the house, but my mind keeps wandering back to the newly arrived drugs. I think to myself, well these are probably meant to help prevent a post-infusion reaction, but I'd never received them before, and no one told me to expect them. It's not the first time a medicine arrives un-announced, but I would have thought some one would have given me a heads up.

I finally decide that, well my Gastro sent them to me, so I guess I should administer them. The thing is, I've never injected myself with anything before. Of course I've seen injections given and I've seen people prepare them. I know I need to eliminate any air from the syringe, but to actually stick myself, I wonder to myself, "Can I do it?" Right off, I'd like to say that I admire the courage of diabetic patients who must self-inject insulin daily. I guess you get used to it, but still. Man, my heart goes out to you.

Now that I've decided that I need to do it, the thought never really crosses my mind to get my wife or one of my kids to bear this burden, I think through where I'm going to do the injections. Since there are two different injections, I decide to give them in to different locations, something I'll come to regret. The last time I had a B-12 injection, I asked the nurse about self-injecting the B-12 and they said that the thigh was a good location. So after some thought, I finally settled on giving myself one injection in each thigh. Now I just had to do it.

My journey, it's what it is

Posted by iKan2

Yesterday was a long day
It's tough to watch people grieve
the loss of a loved one
For me, it may be just as rough
when those who grieve
are who those I love

Some call it paying respect
but I think it runs deeper
with their lives thrashing
in a sea of emotion
I'm honored to be
a safe harbor
if only for a
passing moment

While giving safe passage
is a role I can assume well
it doesn't come without a price
And sure the mental exhaustion
is easy to predict and explain
However, with Crohn's
sometimes the currents run deeper

So with a little extra sleep
I thought that I was doing fine
But that's the mystery of this disease
No one can see what's happening
on your inside, not even you

So after an urgent trip to the bathroom
I get a not so subtle reminder
that while I provide a safe harbor for others
violent undercurrents are still present
And what turned out to be only gas
was also accompanied with a violent signal

As I walked away from the bathroom
I felt those undercurrents
stripping away my confidence
and my strength
with effort I continue
Now this is something
few understand
It's one thing to be chronically sick
but it's quite another
to be constantly
and occasionally violently
reminded of that fact

It then hits me,
like tumblers of a lock
falling into place
my insight springs open
This journey that I'm on
might be more of my "purpose"
than I ever imagined
That simply continuing
my journey is some how
more important than
anything else I might "do"
That simply being here,
as insignificant as that
may seem to me
might be more important
to others
than anything I might
choose to accomplish
of my on accord

Symptom Triggers

Posted by iKan2

One of the most frustrating aspects of dealing with Crohn's is the unpredictability of our symptoms. While it's certainly true that over time, you begin to learn the telltale signs of an oncoming attack of symptoms, even long term patients such as myself can still be surprised.

Since my last Remicade treatment and possibly with a more concerted effort to take Sucralfate, I've been feeling better than I have for years. Still, it has not been without a few really bad days. During these times, patients and their doctors try to identify the triggers which bring about sudden bouts of symptoms.

One of the worst day's I had these last few weeks was when my youngest daughter came down with the flu. After a night of vomiting, we ended up taking her to the emergency room. She recovered quickly and it looked like it was nothing just a 24-hour bug, none the less, it would soon create havoc in our household.

I was the next to get get bitten by the bug and spent part of one fitful night and most of a morning in the bathroom and in bed. After about 12 or 13 trips, I finally got full blown diarrhea. Trying to keep myself hydrated, like my daughter, the flu appeared to have run it's course after about 24 hours. By that evening I was already felling better, but it had been a pretty rough morning.

The influenza proceeded to work its way through our household hitting my other daughters and finally my wife. It was a rough week and half, with most of us eating, at one time or another, a special diet of crackers, jello, and juice.

Trigger - Influenza

One thing I've noticed over the years is that as my children come into contact with different strands of influenza, even though it may cause them  to vomit, when I become infected by that very same influenza virus it inevitably causes me to have massive diarrhea. A couple of times, this has ended up with me taking a trip to the emergency room to rehydrate myself. So I always have to be careful.

It's easy to forget that when you're on Remicade or other immunosuppresants, that you're always at risk of becoming infected.  Now, according to my doctors, it's not the viral infections that I have to be most worried about, but bacterial infections. Now I'm not sure what the difference is, but I guess my body can still combat a viral infection even if my immune system is compromised. A bacterial infection, on the other hand, may be too much for my immune system to take on.  So I probably should have went to the VA Hospital to get checked out when I caught the flu, and if I hadn't started feeling better that day, I'm guessing I would have made the trip.

Trigger - Stress

Now it's fairly well documented that stress can cause a flair up of symptoms in Crohn's patients. Between my disease, trying to raise three kids, and having my wife working and studying for her Masters, things can get pretty volatile around the house. While I try to keep everyone calm, sometimes the price I have to pay is steep.

At times I can feel my guts tense up when things get hectic and people start losing control of their emotions. Again, over time, you become more sensitive to the rising tension around and within you. It's times like these that having a little Xanax can help take the edge off the tension and allow my body to relax. Unfortunately, sometimes, that's still not enough and while the amount of time may vary, I can occasionally make a direct correlation between the stress levels in the household and a sudden attack of cramping and diarrhea.

Trigger - Food

What a lot of people don't understand about Crohn's is that after a while you become a little phobic about eating. As you probably know, eating causes your digestive system to jump start itself. As new food comes into your stomach, your bowels begin to do their job, clearing space for the fresh supply of food. Unfortunately, this jump start of your digestive system can set off a chain reaction of symptoms as your intestines begin to work. For example, sometimes, the jump start of the system is so severe and immediate that you're unable to finish your meal and have to rush to the bathroom.

Other times it can take more time. A common reaction is what I've begun calling a mini-purge. While not as severe as a complete system purge, eating will often cause me to go to the bathroom somewhere between 4 to 8 times. Occasionally this will become so bad (or so regular), that you begin to associate eating with a mini-purge. So you begin to think, "if I stop eating, then I'll stop going to the bathroom." If I'm feeling really bad, I'll put myself on a liquid diet, just to give my systems chance to "settle-down" In combination with the diarrhea, poor abosorbation, and lack of appetite, this is why some Crohn's patients can become anorexic.

Now there's a lot of inconclusive research  that indicates that certain foods themselves can cause a flare-up of symptoms. Over the course of my disease I've had to make adjustments to my diet. Some of my favorite foods became quickly off-limits after my original diagnosis. These were pretty simple to detect. After eating something and then very quickly developing severe cramping, I begin to eliminate those foods from my diet. As you might expect, these were foods with very high fiber content. A food and symptom journal can be helpful in trying to identify potentially harmful foods.

Over the years, I've given up eating cabbage, oranges, strawberries, coconut, and popcorn, to name a few. Like I said some were easy to identify the relationship, but everyone's system is different. That's why the journal can come in handy. Again, according to the research there are no known tests that can conclusively rule out specific foods. So there is not a universally prescribed diet, each patient is different. However there are plenty of general recommendations.

Right now, I'm following what is called the "Low Fiber - Low Residue" diet. While the low fiber part is obvious, the lower residue part isn't. What that means is besides avoiding high fiber foods, I also avoid raw fruits, vegetables, and seeds, as well as nuts and corn hulls. The Crohn's and Colitis Foundation has a great discussion about diet, with some helpful information.

Unknown Triggers 

Then finally, there's the most frustrating category of triggers of all. The unknown. Even being sensitive to the identification of the above described triggers and following the LF-LR diet, I'll still get the occasional flare-up which catches me completely off-guard. I've kept journals and tried to identify patterns in my daily life with these unpredictable bouts of symptoms, but I've never been able to identify the trigger to some of my more acute attacks, such as a "the complete system purge." And as frustrating as these unexplainable bouts of disease are, they are even more frustrating for our doctors to provide assistance. The truth of the matter, is that as IBD patients, we know that our digestive systems are compromised. Throw on top of that the use of immunosuppresive medicines and there's literally hundreds of potential explanations. At this point in my disease and treatment, I'm most inclined to believe that some of these unaccounted for triggers can be linked to hidden emotional factors.

As I've mentioned, so far this year, I've been feeling pretty good. And with the exception of the influenza that swept through the house,  I think that my emotional state has been responsible for my other flare-ups. If I learned anything from reading Thomas Moore's "Care of the Soul", is that our unconscious mind is much more relevant to our emotional well behavior than most people would dare to admit. Through the help of my therapist at the VA Hospital, I've become much more aware of the hidden fears, unmet expectations, and anger going on "behind the scenes" of my conscious awareness. So I'm inclined to believe that my inability to manage these hidden emotions may be responsible for some of the unpredictability of my disease.

You never know

Posted by iKan2

Yesterday, I probably should of went to the emergency room. It all started after an especially stressful Sunday, where I gave my all in support of my family. However, it left me spent and I laid down to rest early after dinner and dishes were taken care of. However, I fell quickly asleep and didn't wake until my wife came to bed around 10:00 pm. It struck me as unusual that I had slept so soundly without the aid of any medication and so I just slipped out of my clothes and continued sleeping.

It was a fitful night of sleep, and near the morning I woke up with the urge to evacuate. Upon waking to help everyone to get out the door in the morning, I must have went to the bathroom like 5 or 6 times. After they were gone, I had my morning coffee and a small snack, but I kept having the urge to go to the bathroom until I developed a small ache in my bowels. Not feeling well, I went back to bed, and again, abnormally I was able to fall deeply asleep.

Awaking later in the morning I tried to get up and get my day going, but I couldn't stop going to the bathroom. All the while my energy level was crashing and I was having trouble regulating my internal temperature. I would be hot, so I would turn on the fan, only to begin freezing, so I would put on a jacket, only to start sweating. Finally after an urgent BM where I didn't quite make it to the bathroom on time, I surrendered to my exhaustion and went back to bed.

By that time, I had already been to the bathroom about 15 times, unable to sleep, freezing while I lay covered with blankets I begin to wonder how serious my symptoms might be. I made the decision that if I had anymore BMs, then I would have to make a trip to the VA emergency clinic. My doctor always cautions me about these types of situations. Since my digestive system is already compromised and my immune system suppressed, I'm at greater risk to bacterial infection than most people.

Luckily, around 1:00 pm, my internal temperature begin to stabilize and my diarrhea stopped. I was able to eat something and my energy level started to recover. Thankfully, by the time the family got home, I was already starting to feel "normal" and was able to make it through the rest of the night without any additional symptoms.

I've become much more suspicious of the dramatic impact that moderate levels of stress may play on my symptoms. Now I can't really explain my malfunctioning internal temperature system, but perhaps it is related to a stress-related flair-up of my Crohn's. I hope that's not the case, because things tend to get melodramatic living with a bunch of control freaks.