So here is a fantastic update on my health. I've been
debating whether I should share this with everyone for quite some time. I've
held off on sharing this because I don't want to share something to get
sympathy and have people worry or tell me how they feel for me, etc... (I know
I'm crazy.) I also don't want to be the person who doesn't let me people know
how I'm doing and shut them out of my life. So I think I'll let everyone know
what is going on. Anyone that reads this should know that I am pretty direct
and open about my disease when I talk about it. With that being said some parts
of this may not be suitable for little children. In fact, some parts might not
be suitable for anyone. So proceed at your own discretion.
Anyways, some of you know that I've been getting sick again
from my Crohn's disease. Some of you have suspected it and have even asked, and
me being the strong silent person I am said I was fine.
The truth:
Back in May I went off of the treatments I had for my
Crohn's Disease because the medicine I was receiving (Tysabri) has an increased
chance of causing PML in patients that take it. The risk increases
significantly the longer you are on it and also if you test positive for having
the JC Virus antibody. (Studies indicate that 50% - 70% of the population have
been exposed to the virus at some point in their lives.) I had been on Tysabri
for almost 3 years and back in May I tested positive for the JC Virus antibody.
Due to this they ended my treatments so I would avoid getting PML. Just so you can understand how big of an
issue this is, PML basically destroys your brain and once you are diagnosed
with it you have only3 - 6 months before you die. During that time you lose
control of your body and your organs shut down etc... It is quite a lovely disease.
Not.
This for me was a huge challenge and decision because before
I went on Tysabri I almost died a few times from my Crohn's Disease being so
severe. It got so bad I had to have half of my large intestine and about 1 1/2
feet of my small intestine removed. Tysabri had been basically a miracle drug
in that it was keeping my Crohn's Disease under control and I actually had a
life again. With the decision of going off of Tysabri there was the concern
that I would basically "crash and burn" as I had back in 2010.
Well, right after I
went off the drug I was put onto another medication called Azathioprine, which
is supposed to help keep my Crohn's in remission. Unfortunately, it has not
done so well at keeping it under control. I have been gradually getting sick
over the few months after getting off of Tysabri. I started to experience more
pain and symptoms of my Crohn's Disease back in September and met again with my
Dr. to discuss my treatment. I had a CT scan which showed inflammation in my
intestine again and that there was some active disease. My Dr. ran more blood
work and upped my dosage of Azathioprine to hopefully get it to come under
control. I also had the lovely time of getting a colonoscopy scheduled in
December.
As a side note anyone that is the age to get a colonoscopy you should get
one. They are not that big of a deal and they will definitely save your life. Heck, I love them so much I've probably had
at least 15 of them in the last 10 years. Ok, so I don't really love them, but
you should seriously should get one if you are over 50 or at high risk for
colon cancer. Don't be a wimp!
I had my colonoscopy in December and during that procedure
the doctor found some polyps and also found a lot of scarring, inflammation,
fissures, and all sorts of fun Crohn's
Disease issues. She took some biopsies of tissue and had them examined. I was
informed the next week that the biopsies showed Low-Grade Dysplasia. Low-Grade
Dysplasia is where the cells in your colon are Pre-Cancerous.
This means that there is about a 20% chance of having cancer
either in my colon or that it is somewhere near it and has spread into my intestine. If there were cancer in my intestine the only
real option at that point would be to do a colectomy. If it had spread from
outside of my colon, then I basically would just be counting my days down. If I
didn't have cancer there would be about a 30% chance that I would end up with
cancer in the near future. Oh joy! This wasn't quite the information I was
looking forward to.
I know that with having Crohn's disease I have a higher risk
of getting colon cancer than the normal person. (About 30% higher.) However, I
was only expecting to have my suspicions confirmed that I was having a
flare-up. Not so.
This news is one of the reasons I decided not to share
anything with anybody for a while. I didn't tell my family, because I didn't
need them worried any more than what they usually do about me. Mainly I didn't
want my Mom to worry about me. I remember when I was first really sick with
Crohn's Disease back in 1998 I saw her crying and worrying that she was going
to have to bury her son. I didn't want her to worry like that again. She
doesn't deserve to have that stress.
My Doctor informed me that because of the flare up that it
was pretty difficult to see all of the areas that could be pre-cancerous and
that I should repeat my colonoscopy in about 6 weeks. During that time I would
be put on prednisone to help get the inflammation under control and they would
raise my dosage of Azathioprine to help get my Crohn's back in remission. When
they did the colonoscopy in 6 weeks they would stain the tissue in my colon to
better see any issues with it.
During this time my Crohn's has continually gotten worse. I have
been getting more sick and feel pretty miserable. The pain has increased and so
has all of the associated symptoms of Crohn's Disease. (I'll spare you a
description of those. I'll just say that I should own stock in the Charmin
company.) The prednisone hasn't really helped to get things any better ,
likewise, the Azathioprine doesn't seem to be effective.
During my recent colonoscopy the doctor informed me that I
have multiple ulcers in my intestine and that my Crohn's Disease is definitely
active. She said that there wasn't anything different than last time. Basically
it looked the same. Which is both good and bad. That means there is still the
issue of having some Low-Grade Dysplasia, but that there weren't any signs of
cancer. She told me that the only way that I could avoid 100% of ending up with
Colon Cancer was to have a colectomy. However, she said that in many cases they
see that if they continually monitor it they are able to avoid any real issues
and hopefully catch the cancer before it gets worse or spreads. She suggested I
follow up with my GI Doctor and that I look at all treatment options available
and get a repeat colonoscopy in 6 months. Yay!
I met with my GI Doctor today and she discussed with me the
treatment options that I have available to me. There are many and each has its
pros and cons.
1. I am trying get into the Crohn's Allogeneic Transplant
Study up in Washington. It is a study where they give you a bunch of
Chemotherapy and Radiation Therapy and kill your immune system. Then they do
what is called an Allogeneic Hematopoietic Stem Cell Transplant. Basically they
take stem cells from a healthy person's bone marrow and then give it to you.
The idea is that once you recover from it you will have a brand new immune
system that is free of Crohn's Disease.
This is something that I am extremely interested in because
I'm sick of having Crohn's and if I could get rid of it I would. However, there
are some major risks and issues with this study. It is investigational and in
order to be a part of the study you have to get your insurance to pay for all
of the costs. Most insurance companies will not cover these types of
transplants for Auto-Immune Diseases. For me to get in I will have to go
through quite an appeals process to get it covered and more than likely it
won't be covered.
Further, there are major health complications that come from
this transplant. First and foremost, with this type of transplant the mortality
rate is as high as 30%. Which means out of the 12 people that they select for
the study 3 - 4 people would possibly die as a result of complications. Even if
the transplant were an Autologous Hematopoietic Cell Transplant the mortality
rate can still be as high as 10%. Even if I were to survive the transplant and
possible complications there are increased risks of other issues.
I find this study really interesting due to the possibility
of finding a cure for my disease. Honestly, I would love to participate even
with the associated risks because of how horrible Crohn's Disease can be.
2. Another option would be to continue on my treatment with
Azathioprine, but start me back on Remicade. The hope would be that the
Remicade would get my Crohn's Disease back under control and the Azathioprine
would keep it in remission. The concerns would be that since I was on this
medication previously I could have Antibodies to it and it would not be
effective or I would have a reaction. I was on this medication for a few years
and then it became less effective. This was right before I "crashed and
burned" in 2010.
3.The third option is to start me on a drug called
Vedolizumab. This drug is very similar to Tysabri, but does not affect the
brain that way Tysabri could. However, this drug is not yet FDA approved and
can only be given on a compassionate use basis. Meaning I would have to ask the
FDA & the drug manufacturer to allow me to be on the drug. In addition,
there is a possibility that insurance would not cover it since it is not FDA
approved. There is also unknown risks with this medication since it is brand
new and has not been tested for a lengthy amount of time.
4. The fourth option would be to get on the drug Ustekinumab.
This drug is currently FDA approved, but only for treatment of Rheumatoid
Arthritis. It has shown to be effective in treating Crohn's Disease, but again
it hasn't been tested for very long and the risks are not all known. It is very
similar to Remicade, so there is a concern that it would not be effective or
that it would not stay effective for a very long time.
With all of the options that include some sort of drug,
there are the increased risks of Lymphoma, Tuberculosis, RPLS (Similar to PML),
and many other side effects. Lymphoma would be the biggest concern due to the
number of medications I have been on over the past few years. In addition,
there is always the possibility that the medications would not work or that
they will eventually stop working. The issue is that since many of these drugs
are similar in their makeup that if you have an antibody for one you could, in
essence, have an antibody to the others. There are some severe reactions that
can occur in this case.
I'll be honest I hate this disease. I've lived with it for
the last 16 years of my life. It has taken so much from me and at times it
seems like dying would be the best option because of how horrible it is. This
may seem exaggerated or stupid, but if you haven't experienced it personally
you would never understand.
When I was getting my treatments with Tysabri I was going to
Utah Cancer Specialists to get my infusion. I got to know quite a few nurses
there, because I was their only patient who's treatments would never come to a
stop.
One of the nurses there was diagnosed with Crohn's Disease
shortly after I started my treatments. (No it's not contagious. It was just a
simple coincidence.) This nurse, Darren, was a great guy. He got really sick
and almost died a few times over the 3 years that I came in for treatments. I
would look forward to seeing him, because he understood just how bad it was and
how sick you could get. I also liked to talk with him, because I knew how
difficult it was for him and I wanted to give him the support that could only
come from someone who knew the disease.
I remember one time seeing him after a few months. Darren
had been out on leave because he had been horribly sick. He ended up having
some surgeries like I did and almost died during all of the issues. He was
working and you could see the excruciating pain he was going through. He sat
and told me just how he felt. He said to me how there were days he just wished
he could die. He said that this disease is one that no one understands. It is
one that isn't just physically tolling, but it is mentally and emotionally
draining as well.
He told me people understand cancer, they know cancer fairly
well. They see the effects and most people at some point have been impacted by
it in some way. He said with Crohn's Disease people have no idea. If someone
has "heard of Crohn's Disease" they tell you that it's just a stomach
ache. Or they compare it to some bad cramps they have had. Or my favorite, that
if you would change your diet you would be ok. Or they compare it to their
"gluten allergy" or their "irritable bowel syndrome". The
fact is that most doctors don't even understand it. So when you are sick and
you tell your doctor and they say nothing is wrong or it's in your mind. You
start to think you are crazy.
We talked about those times when you are having a flare up
and the pain is so difficult that the only thing you can do is lay on the floor
and just wait for it to end. Or you are
at work and the pain begins and you pass out from it. We both laughed about how
the only way you could make it through your day was to basically eat pain pills
like they were candy because it was just so bad.
I just want to
illustrate that this isn't some sort of "tummy ache" or dietary
issue. This is something that is just as real and just as tolling as something
like cancer. (I'm sure someone will be offended by that statement.)
If you took the time to read this I congratulate you and
welcome you into the wonderful world of Crohn's Disease. As you can see there
is so much to figure out and so much that has been going on. I don't want any
sympathy, I just want people to know and understand what is going on. I don't
want to be the person that hides behind their disease and let's it take them
over. I'll be honest in that I have done that for most of the time that I have
had it.
I have kept myself closed off from everybody that is close
to me because it's easier than trying to explain something that they can't
really understand. It's easier than seeing the sad look on a loved one's face
when you tell them that you are sick and dying. It's easier than hearing that sound
in someone's voice as they cry because you are in indescribable pain and all
they can do is look on and want to help, but can't. I've shut people out of my life because of
this disease because I didn't want them to hurt and I've felt that that was the
best way to deal with it.
In keeping myself closed off and not sharing my pain and
suffering I've become jaded. I've wondered and questioned myself and God as to
why this is happening. You hear about people that have some horrible disease
and how they are always helping others and always staying positive. Well, I
haven't been that person at all. I hate to admit it, but I've lost all sympathy
and compassion for most people because I have failed to allow others to have
that for me.
The last couple of months have been some eye opening ones.
It's interesting to be faced with your own mortality. Quite frankly it scares
the crap out of you to know that while you look at your children you have no
idea how long you will have with them. Most people assume that they will be
around for quite some time and live to be an older person. They assume they
will get to raise their kids and get to see them graduate high school and see
them get married. Since my first son was born and again most recently with my
second, I have thought about just how little time I will most likely have with
them. It scares me to death.
I wonder why I have been "blessed" with Crohn's Disease. I
wonder what lesson I am supposed to learn. Most importantly I wonder what is
wrong with me that I cannot learn that lesson so I can just be done with it. I
know that this disease is always a good reminder of the great things I do have
in my life. It is always a good kick in the teeth to make me realize that I am
blessed. It is making me slow down and start to realize and appreciate life.
I'm not going to pretend that going through all of this through my life,
especially the last few months, has made me more self aware of all of my issues
and that I'm some new man. I'm not. However, it has helped me and is continuing
to help me to see things differently.
I do wish I was that person that was super charitable and
loving and kind even though life is being tough for me. I'm not that good of a
person. Hopefully, one day I will be like that. I pray that I learn to be that
way. I hope that I learn to be more compassionate and understanding of others.
Because Heaven knows I need to.
If you learn anything from this, learn to let others in.
Don't only be willing to share the happy times with those you love. Be willing
to share the pain as well. It is during those most painful times that we are
able to find out who we really are and what we can really be. It is also during
those times that relationships are made stronger. Remember that when you are
suffering that you have a choice to make on how it will affect you. Don't let
it make you angry and jaded as I have done. Use that pain so you can better
understand the pain that others go through. It is that understanding that will
make life so much better for all of us.
Learn to love and appreciate others more. Don't take people
for granted or the time that you have with them. You assume you'll have forever
with your loved ones, but honestly you don't know when that will really end.
Live everyday like it was your last day. It might just be.
Finally, learn to forgive and to ask for forgiveness. To all
of those that I have hurt in anyway, especially my dear wife, I'm sorry. I hope
and pray I'll do better.
