Day 20 #NHBPM – Write about alternative treatments / regimens / medicine.


This post will have a double meaning to it.  It will serve as my post for National Health Blog Post Month and it will server as an update on my treatment.  If you follow me, then you know what I am about to write about.

I want to talk a little about an alternative drug treatment for Crohn’s Disease that is growing in popularity.  Now, it isn’t  a supplement that is over the counter or some herbs.  It is a prescriptive medicine but I say it is alternative because currently, it is not an approved treatment for IBD.  I am talking about Low Dose Naltrexone or LDN.

Over the years I have tried every type of medicine for my Crohns.  It started with the sulphur drug Azulfidine and has ended with the biologic Humira.  I have done Prednisone, Dipentum, Azacol, Remicade, Cortiform, Lialda and possible some others that I can’t remember.  None of these meds helped me and in fact I usually got sicker on them and developed other issues.  With Humira I developed a bad case of psoriasis.  After 24 years of traditional therapy, I was open to something new.

Naltrexone has been around for years.  It is mainly used to help drug addicts get off drugs.  It works by blocking the euphoric feelings from opiates.  It was found that it can be used in a small dose, 4.5 mg compared to 50 mg, and still work.  During a study on the drug it was found that by blocking these receptors, it was helping in the body fight off inflammation and heal itself.  So a person can take Naltrexone in a low dose, not get major side effects and have it heal their IBD.

The downside to Naltrexone is that it is an old drug.  It has been around for many years.  This has made the drug very inexpensive.  Because there is no money to be made on the drug, why would the pharmaceutical companies spend millions to research it?  For a month’s supply I pay $15.  I don’t even put it through my insurance. 

So how well does it work you ask.  Well, to start, the beginning is rough.  There are some side effects in the beginning so beware.  For the first 2-3 weeks, you will have insomnia.  The drug works by kicking in your endorphins at night, around 3 in the morning.  It will keep you up when this happens.  You will also have very vivid dreams that seem extremely real.  Don’t worry..this will all pass.  Eventually your body gets used to the endorphin rush and you will sleep.  In fact, Naltrexone helps with producing serotonin so it helps you to sleep better.

As for my use, I have been on LDN for about 2 months now.  Overall I feel great.  I can finally say that I am no longer in a flare, which started in early 2011.  I was having a real rough time and even though going gluten-free helped, it never fully took me out of the flare.  Now, I am feeling normal again.  I go to the bathroom around 3-4 times a day…something I haven’t done in many years.  My best day would be 8-10 times a day.  I have no gut pain, no joint pains, no eye problems.  My psoriasis from Humira is healing and going away.  I am starting to feel like a normal person again. 

On Monday, I saw my GI.  As I have mentioned in the past, I am his first patient to use LDN.  It is an experiment for both of us.  He seemed very happy that I was doing so well.   I am happy that I am well, but I am really happy because if I do real good on it, he might decide to use it as a therapy for other patients.  This really makes me happy because not only does it open up a lot of doors for people who are in my situation, but the fact that I would be able to change a doctor’s mind on treatment options.  I have always liked my GI as I felt he listened well and was open to new ideas.  I wish other doctors would follow his lead.

Day 11 #NHBPM – Write about your favorite thing that is not health-related but likely improves your life


 

My favorite thing that isn’t health related but improves my life.  That is such an easy thing to talk about.  It all started just under 3 years ago.  I never knew what I was missing in life, and then, there she was.  The most beautiful girl in the world.  I never really wanted her but once I held her, my heart melted and I can’t even imagine life without her.  I don’t even know how I lived life without her.   She is my bundle of joy.  I even remember her first words to me.  They scared me.  I was sitting on the couch, she was on the floor.  She looked up at me at spoke.  It took me by surprise because she had been home for about a week and nothing.  Then this.  I was scared because I wasn’t used to it and didn’t know how to take it.
Ok, you are probably reading this now and are a little confused.  Well, here is a picture of my little ball of joy so you can understand me a little better.


This is my Sable.  Now she didn’t always look this pretty.  In fact, when we got her, she was 4 months old and only 4 pounds.  She was underweight and had not come into her own

 

 

So how did this scrawny scrappy little girl become a beauty?  By some TLC.  It all goes back to just after Thanksgiving 3 years ago.  We were driving around trying to find some shelters because my wife wanted to adopt a dog.  However, we are both allergic so we wanted a poodle which have hair, not fur and don’t shed.  They are more hypoallergenic.  Problem is, no shelters had any poodles.  Since we couldn’t find a shelter, we started looking at shops near us, but found nothing that we liked.  Then as we are driving, she calls one place and they say they have one poodle and is sable color.  We looked at each other, and we knew.  We also had a name for her.  When we got to the shop, I saw her right away.  I walked over to the cage and she jumped up to play.  My wife came over and she jumped for my wife also.  They then took her out and we held her.  She was so scared and shivered in our arms.

We bought her for a nice amount, but we look at it like we rescued her.  At 4 months she was old for a pet store.  She probably would have been put into a puppy mill to breed real soon.  So now, we have her to live a great life.  We never regretted getting her from a store.

So for the next week, she was very scared.  She never barked and was very nervous.  We talked to her and tried to play with her.  Then that one day.  I was on the couch and she was on the floor.  She looked up at me, crouched down, butt in the air and barked.  I didn’t know this was a play stance.  She was finally warming up and wanted to play.  I however got a little scared.

When I was a kid walking home from the library with a friend, a dog ran out of no where.  I think it was a Labrador but I don’t remember.  I just remember it was big.  I had to be in my early teens.  So this dog runs out and jump up on me, knocking me down.  My friend jumped onto the roof of a car.  I then here from a window of the apartment building we were next, “Don’t worry, he doesn’t bite!”.  I got up and ran.  I was so scared and ever since had been scared of dogs.

Over time she would eat, and we would cuddle.  She started to gain weight and look healthier.  I felt so lucky to have her.  I would come home from work and there she was, jumping up on my leg so happy for me to be home.  We would play with a ball which turns out is her favorite toy to play with.  For such a little dog, she has a very big heart.  We would of course spoil her and bought tons of toys for her.  There were so many stuffed animals lying around that we started calling her area a jungle, and she was the queen.

And this is what happens when she is in charge.  She kills her animals and let’s them know she is queen.  Ok, this is a bad picture…she needed a grooming.

But over time, she gained her full weight.  She runs all over the place.  She loves humans and jumps on every one that crosses her path.  And every day I come home, she is there to greet me.  My heart melts when I hear her barking a greeting to me.  No matter what my day was like, I have to forget it and spend some time in Sableworld.  I can spend 5 minutes petting and scratching her.  As soon as I stop, she wants more.  She will nuzzle up to me and let me know she loves me.  Some people say that dogs can’t love, that they aren’t capable of it.  I disagree. Sable loves me and my wife.  When we are gone, she is sad.  When we are near, she is never happier.

This is her now.  Fully grown.  When she looks up at me with those eyes, I get all mushy.  I can’t believe how much she has helped me over the past couple of years.  I am no longer scared of dogs.  She helped me see that all they wanted was love..not harm.  She has become connected with me to the point that I can actually understand some of her barks when she wants something.  I remember one time she was on our bed and let out a whimper. I looked over, picked her up and put her on the floor.  She immediately ran to her wee-wee pad and had diarrhea.  It was sad because she was getting sick, but I somehow knew she needed to go to the bathroom.  It was like we were connected in thought.

Now, on those days when I don’t feel right or get sad, I pick her up and give her a hug.  She is my rock and is always there to cheer me up and make me feel better.  Who would have thought that a 6 lb ball of fur would be the best medicine?

Day 4 – Write about what’s in your bag / purse / backpack every day


National Health Blog Post Month!

 

Ah yes – the Go bag, or our version of the Go bag.  Almost every person with IBD knows about this bag.  We all kind of differ on some items but for the most part we all share the same products.  So, what is in mine you ask.

 

Well, to start off, my bag is a normal book bag.  I use this because, 1 – it is easy to carry..just put in on your shoulders. 2 – it is big enough to hide any embarrassing items – you will see what I mean. 3 – it is big enough to carry everything and I can use it to carry other items like packages, umbrellas, kindle, etc.

Now, I don’t always carry this bag with me.  When I go to work, I size everything down and put the bare essentials in my work bag.  If I am going out and doing daily chores..and feeling great, I will not bring anything.  Then there are the bad flare days where I can’t get off the toilet.  Then the bag is glued to my back.

Here is my list of products:

  1. Travel Size Toilet Paper 
  2. Travel Size Toilet Seat Covers
  3. Hand Sanitizer
  4. Extra underwear
  5. Plastic bag with underwear
  6. Latex Gloves
  7. Immodium/Tylenol/Tums/Gas X (all in a pill dispenser)
  8. Waterless soap
  9. Travel Size Wet Wipes
  10. Flashlight

So there it is.  My IBD Go Bag.  What is in yours?  I would love to hear your comments and compare.  Do you have something essential in yours that I am missing?

Goodbye Conventional, Hello Unconventional


3 Weeks ago, my treatment for Crohn’s made a change.  I took my last shot of Humira.    That was my final attempt at a conventional treatment.  Since 1988 I have been treating my Cronh’s with conventional medicine.   I have run the gambit and tried every catagory of medicine there is with no luck.  I have a mild case of Crohn’s and yet I still can’t get into remission.  My gluten-free diet has helped but I am not 100% there yet.  Humira was the last real medicine to try and that has now failed.  So, it is time to get off the road and look for another route.

After doing some research I found that Low Dose Naltrexone (LDN) was being used as a treatment but as far as IBD is concerned, it is still experimental.  There are a couple of small studies done and they all have looked promising.  For anyone that doesn’t know what LDN is, Naltrexone is a medicine usually used in high doeses of 50 mg.  It is used to block the feelings of opiates.  Mainly, the drug is used to help people get off drugs.   It blocks the feelings they get from the drugs so they can take something like heroin and not feel the effects from it.  LDN is the same drug only in a low dose form..4.5 mg.   LDN helps to boost the immune system and has been shown to help fight inflammation.  No one is sure just yet how it is fighting the inflammation which is why it hasn’t been approved yet.  More studies need to be done but a lot of doctors are now starting to get behind this drug.

One theory I have as to why this hasn’t been looked at widely yet is that it is an inexpensive drug.   You can get a 30 days supply for $15 (without insurance).  That means that no one is really making money off of it..so why would anyone reasearch it.  There is no money to be made.  A second theory which I just thought of yesterday is that a lot of the meds for IBD lower the immune system.  On the whole, the scientific community has been looking at lowering the immune system to treat IBD.  LDN raises and helps the immune system.  This is going against what the scientist have been researching…so this would prove everyone wrong.

When I first talked to my GI, I mentioned going off of Humira to start LDN.  He had never heard of LDN as a treatment and was hesitant.  Yet, he wanted to do research on it.  I gave him some time and about 3 weeks ago he told me that it was experimental but he would try it out.  He has no other patients on the med so this is new ground for both of us.  I am very happy that I have a GI that has an open mind and isn’t scared to try unconditional methods.

Yesterday, I got my script and was very happy.  I was nervous to take the pill as I don’t know how I am going to react to it.  The first couple of nights it is said it can cause insommnia and I did wake up at around 3:00 am and couldn’t fall back to sleep.  This is suppose to go away after the body gets used to the drug and in fact it is suppose to help you sleep.  I can’t wait until I get used to the drug.  Overall, there are no side effects which is why I wanted to use this med.  The worse that can happen is that it doesn’t work and I get a bad flare.

The only other major effect to this drug, is while I am on it, I can’t take opiate pain killers.  This worries me in case I ever have to have emergency surgery but for my colonoscopies, I can just stoip taking it for a couple of days.

I know a lot of people don’t know too much about LDN so I am going to try to write about my experiences as they happen.  So on day one, I am normal but tired.  No sleep will do that.   Day 2 will probably be the same.  Wish me luck as I want the insommnia to pass fast and hopefully by the weekend I can sleep again.

Stay tuned for my journey down this new road.  I am sure it will be a great adventure.

Who runs our medical community?


As someone with Crohn’s Disease, I use a lot of medicine over the course of the year.  Whether it is medicine for my Crohn’s, supplements, other ailments (thanks to CD), or just routine medicine, I spend a lot of money.  Recently, I received a letter in the mail from my prescription insurance saying that I am only allowed to get 90 days worth of a med from a pharmacy and then I have to use their mail order service.

Ok, so let me get this straight.  Instead of being able to go to my local pharmacy of my choice to get a med that I might need right away, I now have to use a service run by an insurance company and wait days to get it in the mail.  REALLY????

I need to say first that this is my own opinion.  I am not speaking on behalf of anyone but myself.

So, when did corporate America start running our healthcare system.  I know it has been going on for a long time..but come on.  Not only can you not see any doctor you want, but now I can’t use any pharmacy I want.  It was bad when HMO’s came around and all of a sudden they started telling you which doctors you can see and not see.  You want to see an allergists?  Well, first go to your general practitioner, have them look at you and then get a referral.   And you can’t just see anyone. No he has to be in our network.  Oh the closest doctor in our network is 30 miles away…we don’t care.  Now they are doing the same with our medicine.

The best was when I needed to get approval to take Humira.  My insurance wouldn’t cover it.  They wanted me to take Methotrexate first.  So an insurance company that doesn’t know me or my history is telling me what medicines to take.  I think not.  And now they are telling me where to get my meds.

What really gets me is what happens when you don’t have any insurance.  Well, then you are screwed.  If you can’t afford insurance, then the drug companies assume you can’t afford the medicine so you’re not getting it.  The same with doctors.  No insurance…we then you can’t afford to see me so I can’t see you anymore.

What happened to the days of house calls.  What happened to “I’ll take whatever you can afford”.  When did doctors stop caring?

Now I know a lot of doctors will be mad at me for writing this..but I don’t care.  I hate that it takes weeks to find a doctor.  I hate that they all work 9-5 Monday thru Friday.  I hate that I have a chronic illness and it is so hard to get treated for it.  I live in a very big metropolis area.  If I find it hard…what do people in small towns do?

We need to start listening to and caring about our sick a lot more. We need to tell corporations…get out of our medical community.