This disease is sucking the life out of me.  I'm sitting here full of pain pills and a heating pad on high in order to do this.  I have made a call into my doctor and am going to go in next week and have my liver labs drawn and iron. I am desperately in need of a Hysterectomy and the only way I am going to get it is to show my iron is low.  It's on the borderline and the pain along with my crohn's is sending me over the edge.  Asked my hubby if I should go to the ER and like he said there isn't much they can do for me, so we are going to talk with the doctor about something stronger for the pain.  If my liver labs are better I'm going to see if I can go back to the Trials Doctor and talk to him about some kind of medication to get my flaring severe crohn's under control.  Until then! UGH!

It is Thursday and everday this week has been a replay of Sunday.  It's not getting any better or an easier.  This is a really hard way to live and is trying my patience. 

C-Chrohnic Pain
R-Relentless Diaharea
O-Only You Understand
H-Hell! Daily.
N-Never ending Pain
S-SHIT HAPPENS

Living Daily With Crohn's Disease

Today I thought I could leave and go to run a few errands!  WRONG! WRONG! WRONG!   Of course when I was ready to get in line at the Dollar Store I couldn't wait any longer.  Luckily, like most Crohn's Patients I know where every bathroom in the state resides.  Off to Starbucks.  My husband is patient and sits patiently in the car knowing that it may be a very, very long time before I come out.  Then off to another errand and so the same replay of the same problem.  Tried to sleep with my heating pad last night and basically tossed through the night only to wake up to pain and problems with my bowels.  God help everyone else who has to live this kind of life as today really SUCKS!

At one point I was on a very expensive drug that was a pill form and in conjuction along with it  I had to give myself injections of a drug that used to be used to induce abortions.  Problem was that the injection drug was very hard to find.  I would call all over trying to see if anyone had it available.  I would get no real reason as to why it wasn't available.  It was cheap too!  Doesn't it seem odd that the cheap drug was so cheap and hard to get.  Yet these very expensive drugs are readily available if you have the money.  Eventually, my live once again got very, very sick, not from the cheap drug but expensive drug (FIGURE THAT ONE OUT).  So I had to stop it once and for all.  But I still remember thinking, if I lived up north I could get the drug in the other country, why was it so available there but not here in the good old USA.  I am studying another drug that is also cheap.  Is showing promise and when I mention it to my doctor she poopah the idea.  So I am going to continue to research it and will talk about it soon. 

I have to discuss the costs of these "Big Gun" Drugs.  I understand that it takes money to run trials and test these drugs.  But really!  I know many patients are able to take advantage of some assistance, thank goodness.  But there are still a lot left out in the cold unable to afford these expenses.  I know myself my debt from my health is astronomical.  I looked into the possibility of the next new drug today and my insurance would cover it with a 40% copay and up to $2500 a year.  The assistance covers $500 for a copay up to 17 times.  Lets talk about this.  First off the wholesale of the drug is $1400 an injection, that is cost.  I think retail is about $5K.  Now tell me why does it need to be marked up so much.  At 5K my insurance would cover a 1/2 of an injection.  So much for me being able to go onto the next drug available.  I know I am not alone, there are many, many and countless others who are in the same situation.  We have government paying as said on the news $8.00 for a cup of coffee and $16 for a muffin on our dime but we don't have health care.  Hmmm.  Maybe they could all bring their own food and we could take care of our countries health problems.  Just saying.

Look for things that bring you small Joys

So I am officially unable to participate in the Trial.  I am going to followup with my Doctor and have my liver labs redone.  If there is a change then I will continue to followup every month till they are better.  If not, I need to see a GI for testing to see why they aren't getting better.  I pretty much feel like crap. I feel bad for others in the same position that I am in.  It's a hard go when you are not feeling well.  I slept from 8 pm to 9 am and the only reason I had to get up was a trip to the Golden throne and then so it continues.  If your feeling bad too, try to look at the bright side of life.  Remember the things that make you happy everyday.  I enjoy a good cup of coffee, the 80 plus degrees in September and I LOVE wearing shorts and tanktops, I have a Soprano video to watch today and I am almost done reading a great book!  Look for the things that bring you small joys!

This morning I am really appreciating my family.  I was up all night with severe pain, not even pain pills, heating pad or sleep aid could help me get any rest.  Up and down to the restroom, my poor dog finally left the room and went and slept in the spare room.  My boys are gone and so I was on my own and it's not easy.  At one point I contemplated going to the ER as I often do.  Knowing that unless there's an obstruction there probably isn't a lot they can do for me.  I finally gave in and got up.  Personally, I think if you are in a severe flare as I am you need a caregiver at home with you.  Being on your own is just too tough.  I suppose if you are in remission or your crohn's is moderate maybe you can make do, not to make light of any crohn's symptoms.  That's why I can't understand the inability for crohn's patients to get social security benefits.  So I am up and trying to not think about how much I really hurt and maybe I will become tired enough eventually and be able to sleep through the constant pain.

My elderly mother gave me good advice.  She said I have to keep going to my appointments and hope that things will change so that they can treat my disease.  She said my family members deserve to have a healthy mother and wife.  In all reality she is right.  So I will go to my appointment next week and hope that something has changed. That in some miraculous way my numbers have somehow moved enough that I can get some treatment for this.  What does giving up on getting help prove to my loved ones, that when the going gets tough the tough give up.  I am one tough cookie sometimes and I will hold onto that!

I no longer can continue on my regular medications.  One of which I take specifically for pain management.  After two days of not taking this medication, I feel like an old person.  My joints are stiff (this could be as much from lupus as crohn's) and it hurts to move regularly.  I guess I really never realized how much I depend on this and how well it was working even considering how miserable I was feeling.  And so goes my life.  Should I go ahead and go to my appointment at the drug trial next week with my fingers crossed with the hopes and prayers that possibly my liver count has changed enough to participate.  Or should I live in reality and give it up.  Is it possible for a miracle to happen?  Do I believe in miracles?   I suppose I do, how else do you explain things that happen that really shouldn't in all reality.  Really, what can it hurt, god knows I it couldn't get any worse or could it? 

Just received a call from my Trials Drug nurse.  Bad news, am I surprised, ugh!  My liver is too sick to continue on the drug trial.  My heart sank.  I explained to her that I received a call from my GI's nurse and was told that I needed a liver biopsy and would I agree to it, well not having any further information I called back a week later and asked for a copy of my tests and was told in no uncertain terms, nothing was wrong and of course when I brought up being called for a biopsy they acted like I had made it up.  I am taking a medication that can be known to be hard on the liver and helps with my daily pain.  So I am going to ween myself off of this and hope and pray that when I go in on the 21st to have it redrawn that it will have changed enough to include me.  It has only decreased 6 points in two months and I need it to decrease 8 points in 9 days.  I know, I know but I have to try, what else have I got.  The first dose of this medication has to be taken by the 27th to keep me in this study.  Looks like I am going to lose my chance to receive help with this drug which leaves me with only two other choices, one being a last resort and the other being 20,000 dollars a month out of pocket.  Which means I may not have any other choices, a bag.  I don't know.

So about this Drug Trial I have joined.  It is a drug that has been used very regularly for Psoriasis.  My Trial doctor knows of patients on this drug for Psoriasis.  The funny thing is, the last "Big Gun" drug I was on caused Psoriasis.  It started around my neck, a lupus rash and the lupus rash across the nose and cheeks commonly called the Butterfly Rash.  It then spread into my scalp, ears and started to spread on my face.  I stopped the drug, steered clear of the sun and it's better but hasn't gone away.  So with some luck and PEOPLE I NEED LUCK it will clear up my psoriasis.  I have noticed my hair falling out again and it could be the psoriasis or the so called lupus.  But these are all small compared to the severe crohn's that I am suffering from.  So the drug company is trying to get it approved for use with Crohn's.  If it is approved, I guess the benefit is that there is another drug in the few choices available and insurance would now have to cover it as use for the big C.  It is my understanding this is the third phase and so I think it's promising.  There are some pretty severe side effects that I try not to think about.  One is a reversible syndrome ( a very scary reversible syndrome) the others are all par for the course in my eyes as I have been exposed to so much with all of these strong medications.  Kind of like when you hear on TV a commercial for a new drug and then you hear them list all the side effects which sound worse than what the drug was going to treat.  With that said, I am at a stalemate with my health, something has to be done as living with this on a daily basis has become a huge mountain to climb and so I am moving forward.

So it has been a few days since I posted.  My trip to the Drug Trial proved to be a bit much for me.  I ended very sick the next day.  Crohn's ended me on the bathroom floor and a simple trip to a local drugstore ended with me not being able to leave the toilet in the store for an extended period of time and wondering what the heck I was going to do.  Luckily, my hubby came in and got me and helped me out of the store and home.  God bless my dear husband!  My day at the Trials appointment proved to be a bunch of testing and a worthwhile visit with a new doctor.  I dropped off my frozed stool samples, nice huh?  Took four nurses to get about 8 viles of blood and a few pricks, why do they call it pricks when it actually is a little more painful than a prick.  My veins have all but disappeared.  My EKG was fine and my xray went fine too.  Still awaiting results.  The doctor I saw also suffers from an IBD problem and therefore seems a bit more in tune to how horrible this is for me.  He actually seemed to care that I am as sick as I am and said he was more than hopeful about my participation in the upcoming drug trial.  If I am given serum the first time and don't get any relief, I will then be put into the study with the drug. If I am given the drug and it helps well then I just continue into the trial. If I am given serum and improve I would continue.  So we will see what happens.  It all is dependent on my results of my tests.  If something shows up wrong I have one more chance to retake the tests.  I was also sent home with a diary to keep.  Number of stools, temperature, medications taken, pain level etc...  and my overall well being which has become to be a big problem.  I have much more to say about this drug trial and will try to continue talking about it and discussing it as I progress along.  It was refreshing to see a new doctor who thought the fact that I am controlling my illness as best as I can by not eating, laying in bed and pain pills to be a less than adequate way to be living my life!

Public restrooms are just the worse to have to deal with especially with this Disease.  Yet, they are a godsend in your time of need.  But women, why do you stare in between the cracks of the stalls.  We can see you staring at us.  Do you think it's going to help us relax and get out of there quicker?  What about a seat all covered in pee.  I get it that you don't want to sit on a public toilet, but half squatting and letting it fly where ever is terrible.  Then there's the toilet paper all over the floor.  Really, is it done on purpose.  Then to top it all off there is the one person coming in and complaining out loud how bad it smells, it's a restroom being used regularly they smell.  Then my all time pet peeve, why do the women have a line and the men don't?  If you walk out of the restroom without washing your hands and without using purell from your purse, you are passing germs along that can be life threatening to some people, including people with crohn's disease whose immune systems are usually depressed because crohn's is our immune system fighting itself. If someone comes rushing in and there's a line, if you can wait, let them go ahead of you.  You never know what a person is dealing with in their life and a small gracious lead in the line can make a crohnie's day.  Just saying.

I'm going to again today continue talking about my first "Big Gun" drug.  Evidently this drug is made from an animal protein and since many people can be allergic to animals as I am, I would begin my infusion with a Benedry IV.   This would immediately put me to sleep in the chair, my short reprieve till it ran out and the nurses would come over to switch me to the infusion.  They would also give me tylenol.  Finally, one of the nurses suggested I take tylenol before I come in as they charged $8 a pill.  CAN YOU EVEN BELIEVE THIS!  Also, to use the restroom you had to untangle the cords from the person next to you and drag your IV pole to the restroom where everyone could listen to you go to the bathroom. Now this was quite fun considering crohn's.  Often the trip to the restroom isn't short and is quite smelly.  So you open this big door for everyone to see and smell.  Nice huh?  Now, since myself and many others cannot get disability for this damm disease, lets talk about these every 4 week appointments for my infusions.  It's not easy to ask your employer to take a half a day off to go get your infusion every 4 weeks.  Employers don't like employees missing work, try adding this to days off from being sick.  So not only do crohn's patients take the chance of losing there job, paying for an expensive medication  and then you have the risks of the medication not working or causing other problems.  Then there's always co-workers who think that possibly you are being catered to because you need so much time off.  I will back up, it took an act of god to even get this drug covered.  First, my doctor tried every test in the known world and medication before finally a friend of mine who was a nurse suggested that I try this.  Then the insurance didn't want to pay, I guess I can't blame them considering the cost.  The nurse who told me I had been denied at the insurance suffered from crohn's too.  I cried, cursed and fought and finally they approved it.  But all the time I wondered if my husbands employer ever found out that I was on a maintenance drug that cost that amount would they use some excuse to get rid of him.  120K a year for one drug is a lot.  But in the end, it did little and caused more problems for me than it was worth.  Who knew.

So one of the first Infusion "Big Gun" drugs I was one really never helped.  I was on it for quite some time before finally at one infusion my faced turned red and it felt like I was having an allergic reaction.  After that I never went back.  They were expensive treatments, if I remember right about 10K every 6 weeks and we had insurance but still you end up paying quite a bit considering the cost.  When you are desperate and hurting you will try almost anything.  At the time, I had sores all over my legs.  My GI had the nerve to tell me that it was probably from shaving with a dirty shaver.  Are you seriously that stupid or are you just afraid to admit that one of these drugs could possibly have side effects.  Not to mention my sinus problems and explained in a previous post that led to surgery that ultimately the growth grew back and at this point I'm not sure what to do.  Then you have the long term affects that you never are sure about.  Cancer, etc....   It seemed that for a week after the infusions I had more energy, but again being dehydrated from this disease it's hard to say whether it was the meds helping or the saline mixed in.  These were hard infusions to go take on a regular basis.  You would sit in a large room full of extremely ill people, most fighting cancer at one point my dear friend who eventually passed away was sitting there with me.  Many would be crying and in excruciating pain either physically or mentally.  Not only would you be put in this situation and I don't mean to sound nasty, but many of these poor dear folks would be desperately ill.  I would try to sit as far away and by myself as possible for fear of catching what they were carrying with them.  These drugs weaken your immune system and you are in a weakened state.  The infusions would take about 3-4 hours and there was no entertainment, just a chair, sometimes if you were lucky you were offered a blanket and whatever you brought with.  The problem was when someone is one foot away from you and the room was full of this situation it's hard to rest, relax or even concentrate.  Now try doing this for years and paying large amounts of money to do it and not knowing the consequence of the drugs.  This is the reality of severe to moderate crohn's disease that doesn't let up.  GOD BLESS THE NURSES WHO GO AND DO THIS EVERYDAY!  At 10K a pop couldn't they afford a room larger than my living room for 30 people fighting for their lives.  Someone was getting rich at our expense and I hope they can feel good about spending money earned in this unconscionable fashion.  Just saying.

Daily Living With Crohn's Disease

I had an idea of what I wanted to talk about today, but instead I will hold off till tomorrow.  Was up most of the night in pain and the pain is over the top today.  If I thought there was something that could be done at the ER I would go.  I will try and hold tight.  So all I ask is if you are following my Blog or just reading for the first time, leave a comment, let me know what you are thinking.  If you are fighting this disease too, let me know how you are feeling.  Take care and I hope for a better day tomorrow.

Living Daily With Crohn's Disease

Today my post may be a bit shorter.  I am dealing with excruciating pain.  My suggestions on how I deal with this to try and stay as stress free as possible.  Sometimes that's not possible, I realize that, but hopefully the people around you who love and care about you will make it as easy as possible.  My GI Doctor doesn't believe in pain pills, I think it is absolutely the cruelest answer to someone who suffers with this disease.  How the HELL are you supposed to get through the pain without it.  For me, I have been in regularly to see my Family doctor and he has watched me as I cry explaining my pain and realizes that taking a 1/2 a pain pill and a heating pad are sometimes the only thing short of going to the emergency room.  In fact, more often than not this is the only thing that keeps me somewhat sane.  I am not opposed to alternative means of pain management and am not far from trying those options.  If you stand opposed to alternative pain options on a moral ground, well shame on you, if you live with pain you would get off your high horse and realize when people are desperate for relief, relief is what they should get.  So with that rant I am going to move on with my heating pad and curl up in bed and wait for this to pass or not.  Pray that tomorrow will be better.

Daily Living With Crohn's Disease

Crohn's is known to cause weight loss.  If you have had crohn's you know that this is all you hear.  I have to be honest I haven't experienced this side of it till I went off the "Big Gun" drugs.  The last "Big Gun" drug caused a weight gain of quite a bit and when you go to the forums you will hear this over and over.  I think they must be made to put weight on patients, it would make sense because if your flaring and not eating, you are not taking in the correct nutrients and therefore lose weight.  Over the course of this summer I have dropped 20 plus pounds.  Now this worked out okay for me as I was overweight to begin with and 20 pounds hardly made a difference.  Now I feel the difference.  But if you are a small person and you lose 20 pounds from being ill that can be devastating to your health.  With no hope in sight of things changing for me, I am careful to eat soft foods that are healthy.  My daily regime lately is a soft banana, yogurt(even though I am lactose intolerant), maybe some cheerios with water or a piece of plain toast and lots of liquids.  I go to sleep with my stomach grumbling from being hungry but eating and filling it up will just lead to a night of pain and trips to the John, so it's not worth it.  I think it's somewhat of a myth that crohn's patients are skinny, most that I know deal with the bloat, weight gain from meds and probably lack of exercise.  I really at this point could care less about weight, I would be happy at almost any size if I could regain my health.