Extended Forcast: Mostly Dry, With Chance of Sprinkles

 Three months ago I wrote a blog titled, "Forecast: After A Week Of Precipitation, Outlook Unclear."  Where I briefly discussed my previous bladder issues, only to use the rest of the blog post as a platform to complain about how I had been wetting the bed.  In the three months that have passed since that post, my bladder situation as described has made a 180 degree turn.  Before I was dealing with urine incontinence, and frequency, where now I am now dealing with urine hesitancy, a weak stream, as well as still dealing with pains in my bladder, flank, and kidney (left). A big change that I have made since the last post, is one concerning my doctors, as I now have a new urologist; the reason for that being that I didn't feel that he (my old urologist) was being as proactive with my situation as he should.

  As I mentioned my symptoms have changed pretty dramatically when it comes to what I was, and what I am dealing with, concerning my bladder. Now emptying my bladder takes the concentration of a Buddhist monk, as I have to stand in front of the toilet with my eyes closed in complete silence so I am not distracted from the task at hand. There are times where I can stand at the toilet for up to minute, only to produce a stream that sheds the same velocity as water being wrung out of a washcloth, as well as producing about the same amount.  I swear that while I'm standing in front of the toilet trying to piss,  I can hear Obi-Wan Kenobi telling me, "use the force." In all seriousness, this whole situation has become very frustrating, as I have gone from urinating up to twenty times a day, and wetting my bed, to needing a fuckin' tutor in the bathroom to teach me how to piss!

  With my bladder problems continuing, and not seeming to get any better, as well as a urologist who was more reactive, then proactive in my treatment, I decided to make a change in doctors. I was given a referral for a new urologist by the surgeon who performed my "end ileostomy," and considering the amount of trust I have in him, I quickly made the initial appointment.  I have now seen my "new" urologist three times, have had a bladder scan, and a ultra sound on my bladder and kidneys, with the results of both tests showing normal functioning of both my bladder and kidneys.  So, with the tests all coming back clean, why am in pain? The answer: nerve damage.

  Per my urologist, after he had looked over all my test results, both past and present, all my pain is due to the radiation I received following my colorectal cancer diagnosis, and my three "major" abdominal surgeries.  Turns out that radiation does some harm as well as good, and the surgeries that I have had in the past have created a significant amount of scar tissue, thus creating nerve damage. So, when my penis, testicles, bladder, or kidney hurt, there is no "real" pain, just my brain sending false signals to those areas of the body.  The nerve damage is also accountable for the feeling of having to urinate, as well as the urine hesitancy.  The positive I can take from this is that now I have an answer to "why?," the negative is there is not much that my urologist can do.  I was told to "void" every two hours, as well as to set my alarm to wake me up in the middle of the night to use the bathroom, and with that advice, along with biannual appointments set for "check-ups,"  I was told to see a pain management doctor, as there is nothing else that can be done on his end.

  Anyone who knows me well, knows that I would rather just deal with the pain than take any pain medication.  Now, don't me wrong, the reason why I would rather deal with pain, than take any pain medication has nothing to do with how tough I am, or think I am, or any "beef" I have with western medicine, the reason I don't take, or like to take pain medication has to do 100% with how neurotic I am, especially when it comes to taking "drugs."  See, I have this irrational fear of getting "high," and/or becoming addicted to the medicine I am prescribed, and in my head the rest of my life would consist of me "doctor shopping," and becoming a regular on the show "Intervention."  So, if I was given the choices of pain or addiction, I would choose the former.  With that being said, I am in a good amount of pain/discomfort, not to mention that I would like to get over my neuroticism, so I am going to do my best to have an open mind towards pain management.  

  Bottom Line:  I have chronic pain/discomfort, and as I see it there are three options to dealing with it. First option: I can accept my situation for what it is, move forward and not let this pain dictate the rest of my life. Second option: I can choose not to accept it, feel sorry for myself, curse my situation, become even more depressed, and not really live life, and just go through the motions. Third option: I could say fuck it, and kill myself, because that's how unfair I feel life is.  Well, the third option is not a choice, so that leaves me with acceptance or feeling sorry for myself.  The correct answer is clearly acceptance, but its also the most difficult when dealing with mind numbing discomfort on a daily basis.  I know how I want to live, I just don't know if I have the "drive" to accept it and move on, as I see myself more as more of a" going through the motions" kinda guy. Hopefully I will accept the situation at hand and move on with a smile, after all I'm only 35, and I have yet to turn my dreams into my reality.

  Lastly: I don't know if any of you have to deal with chronic pain of any sort, or just feel as if life has dealt you too hard of a hand to be able to live the life you would like to lead, but I would like to know how you deal with life's ills.  I've said it before, I don't know if I can help you, but what I do I know is that you can help me.  Let me know how you deal by emailing me kristoferadam78@gmail.com 

Honestly Me

  As I sit here on my couch and begin to write this post, I feel  if I should attach a warning label that says, "excessive negativity," or preface what I'm about to write by saying, I have never felt this sad, this angry, this scared, or this alone, when attempting to put together a blog post.  I also would like to say that due to how emotional I am as I write this post, I can almost guarantee that it will not read as well, or be put together as cohesively as It should. Now that I have gotten the formalities out of the way, here are the facts: On October 29th I had a procedure done called an E.R.C.P, where the doctor inserts a long flexible tube down my esophagus, and into my G.I tract. The following is what I had to endure after the "procedure."

  When I "came to" in the recovery room, I remember being met by the surgeon who performed my procedure, and being told that the "procedure" took about two hours to complete.  From what I remember the surgeon didn't seem to be concerned with the lengthy time of the procedure, and if he wasn't worried, neither was I. When I got home that evening, I was dead tired and felt like hell, I went directly to bed, and slept through Wednesday. By Thursday afternoon I finally pulled myself out of bed in hopes that moving around my apartment, and trying to eat something would make me feel better, unfortunately that wasn't the case.  Days went by and I was still feeling run down, and my stomach cramps had become so intense that I couldn't tell if I was starving or nauseous, I felt horrible, but still, the worst was yet to come.

  Around eleven p.m. Sunday evening I went to bathroom to empty my ileostomy bag, and that's when I realized how sick I really was. I wasn't putting out stool from my ileostomy, but blood, dark, red, fresh, blood, and just as quickly as I emptied my ileostomy, it would start to fill with blood once again.  Fast forward about an hour, and I find myself in the E.R of The Washington Hospital Center, where I would spend five hours being evaluated, scanned, and waiting for doctors to figure what to do with me. At roughly five a.m. I was admitted to the I.C.U, and was promptly met by a team of doctors, nurses, and anesthesiologists, who were getting the room, as well as my self prepped for an upper endoscopy so they could figure out where the bleeding was coming from, and stop it.  The official diagnosis was "acute internal bleeding." Two days later I had another E.R.C.P to check how I was healing from the cauterization performed when I was first admitted, as well as to remove the two stents from my bile duct and pancreas that where placed during my E.R.C.P on the 29th. Initially things looked good as I was on the mend, and the stent from my bile duct was successfully removed, but the stent from my pancreas was unable to be removed, as it now was floating somewhere along my G.I tract.  I was told not to worry as the stents themselves are small, and I should pass the missing stent in my stool over the next few days following said procedure.  I still haven't passed the stent

  During my four day stay in the I.C.U, I was told that I was anemic, with a touch of pancreatitis. I received two units of potassium intravenously, and had two units of blood transfused due to my "acute internal bleeding."  I have never been so scared in my entire life. My palms where ghostly white, and without color due to the amount of blood I lost, I was unable to leave my bed, because of how lightheaded and weak I had become, and because of my weakened state everything had to be done for me; use your imagination concerning that last statement. This was an experience that has done far more damage to my psyche than my physical person. With every ache and pain I have felt since being discharged I assume the worst. The last time I had unusual aches and pains, I found myself in the intensive care unit, what's next? My paranoia has manifested itself into anger and resentment, and in turn I have become a person I truly loathe.

   I resent everyone.  I resent everyone who is healthy and takes it for granted. I resent everyone who drinks, does drugs, over eats, or smokes, and then has the audacity to complain about the negative impact these choices have had on their health, and/or even think they are some how deserving of sympathy for something that they did to themselves! I hate everyone who constantly complains about their, "oh so tough lives," what I wouldn't give to have some of the problems most people bitch about. Oh, and by the way, no, all of our problems are not relative, in fact they are very particular.  When I hear people complain about their "problems," in my head I'm screaming, "get some fucking perspective!, At least you have your health, and you should only be so lucky never to know what its like not to!" 

  Bottom Line: I have become the quintessential bitter, and jaded old man. The man who cant stand happiness, unless it is his own.




             

Promises, Promises...

   Since the last time you heard from me I have been able to meet with my surgeon for my post op appointment, during which he looked over my incisions and stoma, and told me that I was healing nicely, and my stoma looked healthy. After the physical examination potion of the appointment was over, I was able to ask my surgeon a few questions.  How long would it be before I would be able to get back in the gym? What limitations would I have when it comes to physical activities, as I have read that people who have the surgery that I did are more prone to getting a hernia, and what foods do I need to stay away from?

   When I asked my surgeon about getting back into the gym, I was surprised to hear that I could get started now, but to only to do light cardio and some upper body workouts. The reason for the light load at the gym is that the full recovery period for my surgery is three months, and technically I'm still "recovering."  The good news is that only a few weeks separate me from "three months." My next question was if I was more prone than others when it comes to getting a hernia during physical activities because of my surgery, and I was given more good news when he told that hernias are not something that I need to worry about.  Now for the cherry on top...once I have passed the three month date of my surgery, I am not limited in anyway shape or form!! I can do everything I did before, there is no weight limit in the gym, nor any exercises I cannot do. I was sure that I would be limited in some fashion, but to know that I can have a "normal" life, I was ecstatic!  I called my trainer to tell him the great news, and we are scheduled to start working out mid November.

   As far as foods I should stay away from the list isn't very long, which I'm not sure matters, considering that I eat the same thing everyday, but that's a blog post in itself, (my diet) but I digress. There are really only two food items that I was told to stay away from all together: popcorn, and lettuce. Popcorn, because it can easily get stuck causing a intestinal blockage, and lettuce because its indigestible (an interesting tidbit I learned at my appointment).  Like I said, there are only two foods I need to stay away from altogether, however, I was cautioned about eating vegetables. I was told that if I was to eat any vegetables, that they should be cooked rather than raw, which would make it easier for me to digest.  Now all I have to do is eat better, and by "better" I mean more, and larger portions.  Before I had this surgery I would rarely eat three full meals a day, reason being, the more I ate, meant the more times I would have to empty my bowels, and before my surgery emptying my bowels entailed inserting a catheter inside my rectum between four and six times a day. Gone are the days where I can use the catheter as an excuse to why I am not eating all I should. Fingers crossed as I move forward, because my diet has always seemed to be my achilles heal.

  Bottom Line: When I started out on this journey I made some promises to myself. I promised I would document everything I go through, I promised I would give it all I had in the gym, and I would eat better to give me the energy I needed to work out, as well as be able to gain and maintain a healthy weight. Here are the facts: I haven't been blogging and documenting my recovery the way I planned, I haven't started to work out yet, so we'll see how that goes, but I haven't been eating the way I should.  Maybe I have a psychological block, maybe old habits die hard, or maybe those are all  just excuses, and the answer is simple, I'm lazy.

  Lastly, I don't know the reason why I'm not doing all that I should, all I know for sure is that I'm stuck and, not sure how to get moving again.  If anyone has found themselves in a rut, and gotten themselves out, please let me know how you did it, I'm listening....

kristoferadam78@gmail.com

Everyone Poops

   I have now been out of the hospital for a month, and on Monday, September 23rd I was discharged by my home care nurse. The job of which was to teach me how to live with an ileostomy, including, but not limited to what I can expect, as well as how to take proper care of my "stoma."  My last big appointment concerning my surgery is on October 9th for my follow up appointment with my surgeon.  Assuming that he clears me with a clean bill of health, and puts no real restrictions on my lifestyle, for all intents and purposes October 10th will be the first day of the rest of my life.

  Going into this surgery, I was really concerned with body image. How would I deal with my new appendage?  Would I stay strong and live by the all of the positive things I had preached to my friends prior to my surgery?  Or would I crumble in the reality of my new situation? The truth is, while I was saying all the right things, I was trying to convince myself more than anyone else. I was really scared, I was scared that I wasn't emotionally/mentally strong enough to deal with a life with a permanent ileostomy, and my emotions all stemmed from my first bout with the "bag.".

   Three things stuck out in my mind from having an ileostomy when I was eighteen.  First, I was so embarrassed, I didn't even tell my girlfriend, whom I was spending everyday with prior to surgery, like I was some how going to be able to hide it from her. Still, even after she found out, I wouldn't let her see me in anything less than boxers. Second, while stopping to get gas one day I ran into a girl who I graduated high school with, while exchanging pleasantries I was interrupted by a pointed finger, and the $64,000 dollar question, "what's that?" To which I calmly replied, "umm...that's my ileostomy bag, uh...I gotta go." Thirdly, while out with a friend one evening my bag broke, which resulted, in my own feces being spread out over my shirt and stomach.  These are the things I have come to associate what a life with an ileostomy bag would consist of; hence my apprehension, and fear of emotional/mental stability.

   Fast forward to present day: I am no longer eighteen, but thirty five, and permanently adorned with an ileostomy bag. While I wish I was able to say something along the lines of, "that was then and, this is now," and follow that with stories of how well I've adjusted to my new "life," I'm just not quite there yet, however, things are far from bleak.  Knowing that I was going to have a tough time adjusting, I planned ahead. I spoke with my personal trainer who I worked out with prior to surgery, and discussed with him how I wanted to turn this negative into a positive by getting into the best shape of my life.  I also asked a good friend of mine, who is a phenomenal photographer to take pictures of me "modeling" my new appliance. My thought process being, if I'm going to have an ileostomy, I'm not going to hide it, I'll become the "poster child" for ileostomies if that's what it takes for me to become comfortable in my own skin.  I refuse to let my neurotic fears dictate my self image.  I will love myself, not in spite of my ileostomy, but because of my ileostomy.

   Bottom Line: I do now, and always will wear an ileostomy bag.  Do I like the fact that this is my situation? Of course not, will I have bad days where I curse my situation, and wish it wasn't mine to deal with? Absolutely! I understand that there is going to be an adjustment period before I become completely comfortable living with an ileostomy, but when I do start to feel overwhelmed, I need to remind myself of the reason why I wear this ileostomy bag; I wear this ileostomy bag because I am lucky enough to call myself a survivor, instead of  being referred to as a statistic.  My ileostomy bag is my "Badge of Honor," and with pride I say," my name is Kris, and I wear a bag of shit on my hip!"

  Lastly, I invite all of you to ask me anything you would like to know concerning my ileostomy, I am an open book, and there is no such thing as a question to personal.  You can ask me, via the comment section on this blog, or my e-mail at kristoferadam78@gmail.com.  I look forward to hearing from you.

Forecast: After A Week Of Precipitation, Outlook Unclear

  I have wrote, and rewrote this post multiple times just to erase it and start from scratch again and again.  I am having a real hard time putting into words exactly what I want to say. I either write too much, not enough, or end up going off on some tangent that has nothing to do with the point of what I am trying to write in the first place. I am treating this blog more like an English paper where I am expecting to be graded, or maybe I am just full of excuses. So, here is what I've decided to do, I am going to write straight from the heart, put everything out there, and not worry about anything else. With that being said, I apologize ahead of time for any grammar issues, over usage words, or anything that makes this blog harder to read than it should.

  To make sure this all doesn't seem as if its coming out of left field, I will give a little back round while trying not to become overly verbose.  Off and on since I was nineteen I have been dealing with bladder issues stemming from my original diagnosis, with most of what I had to deal with being nothing more than a U.T.I.  About a year prior to the surgery for my "end ileostomy" I started feeling discomfort in my penis, testicles, bladder, flank, and kidney.  I was urinating up to twenty times a day, and even when I wasn't urinating, I still felt as if I had to. In a short amount of time my symptoms which began as discomfort, started becoming more serious and were now causing me pain. From that point I met with my urologist who ran me through a gamut of tests, everything from  a simple urinalysis to a cystoscopy, all of which came back normal.  After talking to my urologist about potential ways of dealing with the unknown, I told him about my upcoming surgery to receive an ileostomy. He was glad to hear about my decision to have this surgery, not only because he knew of my previous struggles, but also, by having a diverting ileostomy my bowel would no longer press against my bladder which would at the very least give me some relief from what I was going through, so I was told.

  I have now been out of the hospital for almost three weeks, and I  have to say that for the first week or so I thought he was a genius, as I had no pain. Then slowly but surely a little of the discomfort started to come back, but still was nothing compared to what I was dealing with before. If things stayed this way I would be more than okay with it, but as you can probably tell by the tone of this post, that's not the case.  This past Monday, labor day, I woke to find myself in a situation that I couldn't believe, I wet the bed, not only did I wet the bed Monday, I wet the bed all but two days this week, with the worst day being Thursday. There was so mush urine Thursday morning, that if I didn't already have a mattress cover from my days of fecal incontinence, my mattress would have been ruined. 

  Look at me now, not only can I  defecate from my abdomen, I can now add bed wetting to my "bag" of tricks. This is sure doing a lot for my self-esteem, especially considering the fact that I'm  single.  Maybe I'll get lucky and meet a girl who likes to get peed on. I can see it now, as it would go something like this: "what's that? oh, you liked to get peed on, well then you are in for a treat, because I am so good at peeing that I can do it in my sleep." There is no way she could refuse, I even made a poem out of it.  All kidding aside this is killing my self esteem, staying positive while living the rest of my life with an ileostomy is one thing, but now I'm looking at the possibility of having urinary incontinence. This situation is making me feel as if I had surgery only to be able to trade in one type of diaper for another.

  Unless there is a simple fix, I don't know how well I'm going to handle this. I mean really, lets take a look at how I've been dealing with this so far this week: sleeping all day in hope that this will all just disappear on its own, cursing the situation while fighting back tears, or here is the best one, trying to convince myself the world owes me something just because I don't know how to deal with the cards I've been dealt.  This whole week has just been one giant pity party that I've been throwing for myself. Why me? When will it stop? What else is going to happen?  For most of my life I have been able to pride myself on staying positive regardless of the situation, and that's something that I definitely haven't been doing this past week.

  So where do I go from here? Am I ashamed of that fact that I am now wetting the bed at thirty-five years of age? More than you know. Am I embarrassed to admit my personal issues to all of you?  Yes, even more so than the shame I feel. With that being said, you might ask why am I telling you this? Well the answer is two fold.  First, whether I tell you I pee myself when I sleep, or keep it a secret doesn't change the fact that I do, and maybe my brutal honesty will be therapeutic, and help me accept myself for who I truly am, or maybe I could help someone else who is dealing with something that they find shameful, embarrassing, or what have you.

  Bottom line:  We are who we are, we all have our insecurities, vulnerabilities ,and things about ourselves we wish we could change.  I just hope that some how we can learn to accept ourselves for who we are, (myself included) as we are, and will always will be our own harshest critics.  Lastly, I would like to end this by asking a favor of all of you. I would be honored if you felt comfortable enough to e-mail me @ kristoferadam78@gmail.com, and let me know a "secret" or something that you have a hard time talking about, and together we can try to help each other.
 


  

My Life In A Bag

    

    In June of 1996 I had my first colonoscopy at the age of eighteen, where I found out that I had a hereditary disease called "familial adenomatous polyposis." I was told that I would need to have surgery to have my colon removed, and I should do so soon due to the amount of polyps that I already had in my colon.  On September fourth 1996 I went under the knife, the surgeon performed a total colectomy with a partial proctectomy and a end ileostomy.  Unfortunately this is not where my story ends, but where it begins.  During the surgery an apple sized tumor was found in my rectum.  My first memory upon waking from surgery was my grandparents standing to the left of me, and my surgeon standing at the foot of my bed, with about four other "doctor types" standing with him whom I had never met before.  My surgeon then told me that I had stage three colo-rectal cancer, and a forty percent survival rate.   From there, I was given an analogy by my surgeon that I will never forget, "Kris, this is game seven, and then proceeded to tell me that I will need chemo and radiation therapy.  Being the vain kid I was, upon hearing that I would need chemo, I immediately looked at my grand father and said "I'm going to lose my hair?!?!."  Being the kindest, sweetest, most caring man I know, he said, "don't worry we will got you the best wig money can buy."  Little did I know I was going to lose my hair regardless due to male pattern baldness, but I digress. 

    In June of the following year, after I had completed my chemo and radiation therapy, I went back for my second surgery.  This time the surgery was to remove my ileostomy and connect my small intestine to what was left of my rectum, via a "J-Pouch," which basically worked as a "mini-colon."
Next thing I know its September of '97' I get a call from the doctor who tells me, that I have been cancer free for one full year, which was great news to hear, now all I have to do is keep up with my doctors appointments, move on with my life, and hopefully the cancer will remain in remission.  Thankfully the cancer did remain in remission, but unfortunately that's only half the battle. 

   A few months after my second surgery to "connect my insides," I started having trouble fully emptying my bowels, and the reasoning behind that was anal stenosis, which in my case is when the anal canal narrows due to scar tissue.  To try and help fix this I was dilated several times under anesthesia, but to no avail, even after being dilated three times I still was unable to empty my bowels completely.  The discomfort with not being able to go to the bathroom became so bad that I would drink one to two cans of prune juice a day purposely give my self diarrhea in hopes that would help me be to able to empty my bowels.  I called and spoke with my surgeon, explaining to him that I was still having trouble despite the dilation's, and was using prune juice as a way to help evacuate my bowels.  He suggested a "medina catheter," a tube that I would insert into my rectum, and use syringes to shoot water through the catheter and into my bowels, basically an over sized enema. While this new way of emptying my bowels was working the discomfort and annoyance of having to use a catheter every time I had to use the bathroom started to take its toll. 

   After a few months of using the catheter irrigation method, I was referred to a colo-rectal surgeon, who might be able to fix, or at least help me with my problem.  After making a consultation appointment with him, a surgery was scheduled where he would make a few cuts in my rectum to help with my anal stenosis.  A few months had  passed since the surgery to help with my anal stenosis, and  I was still having to catheter myself, not only that, now I have now no control over my bowels while I sleep, and partial control while I am awake. I am now wearing a diaper every night to bed so I don't ruin my sheets, and a pad in my underwear so I don't soil myself during the day. This was all becoming way too much for me to handle.

   At that point in my life I was twenty five years old, extremely embarrassed of my situation, I would only talk about it with a select group of people, and even with the people I chose to discuss it with, I never fully disclosed exactly what I was going through, or the affects it had on my self esteem. The anxiety with my situation became so strong that I started pulling away from my friends and family, I was leaving my house only to go to work, I was turning into a recluse. I couldn't see a way out of my situation and because of that spent the next five years of my life withdrawn, scared, embarrassed and ashamed.

   I was given the opportunity to talk to a therapist, and I made the right decision and took that step.  I was diagnosed with panic disorder, and obsessive compulsive disorder.  Through countless hours of very intense therapy I got to the root of all my underlying anxieties and compulsive behaviors, and wouldn't you know, it was my old friend cancer, I never dealt with all the emotions that came along with this disease and in my case it manifested itself in extreme anxiety and obsessive thoughts and behavior.

   So, why am I writing this blog, many of you might be asking yourself, and here is the reason.  Tomorrow, August 5th 2013, I am having a surgery to receive a permanent ileostomy. No more diapers, no more pads, and no more catheters in my rectum every time I need to use the bathroom. Physically my quality of life is going to change dramatically for the better, but I know from experience that there is more to deal with than just the physical.  Regardless of how much better I feel physically, I know myself well enough to know that I am going to have some serious body image issues, and as a single thirty-five year old guy, rightfully so!  Here is the important part, how am I going to deal with it, how am I going to turn this negative into a positive, and fortunately I have an answer. First I am documenting my entire experience from my surgery; I will be doing this by blogging, taking pictures, videos and being painfully honest with all my ups and downs on my road to recovery and beyond. Second, I have found myself a great trainer, who starting the first day I am able to work out, which should be a month from tomorrow is going to help me change my body, from a skinny, scarred, and now bagged body, to the "after photo" from your favorite infomercial. I will also be documenting my results as well as what I have been doing to obtain them on this blog as well.

   The bottom line....I am scared, make that really scared of what the future holds for me, so I thought the best way to deal with this situation was to document it. Hopefully it will be therapeutic in some way,  and help me come to grips with my new body.  I know I cant do this alone, so I am asking you to follow me on my journey though all the peaks and valleys and help me stay strong, and in return I will answer any question you have with 100% honesty.  Maybe I can help you while you help me?  We all have our differences, physically, mentally and emotionally, they are pointed out to us on a daily basis, whether it be from the television, magazine, or some other media outlet, lets forget our differences, and focus on our similarities...