Moden Medicine

I have yet to mention anything at all in the way of treatment options or my own personal views on any of the medicines out there as of yet, so I will do this now with two of the medicines I have reading a lot about and have had on my mind these past couple days. In my next post I will be sure to review and talk about all Crohn's related treatments, these two however stick out to me so much right now because they can potentially effect so many lives, not only those who are dealing with Crohns. As we all know, any relief from what we are faced with day to day is a gift, a maricle, and nothing short from being a true blessing.

This is a treatment that has been getting more and more good reviews. This one is called Low Dose Naltrexone or LDN for short. It has been known to treat all kinds of autoimmune diseases, HIV/AIDS, cancer, and central nervous system disorders. It has been known to have a 67% success rate in remission for those with Crohns and 89% responded in some way during the clinical trials. It is not FDA approved worldwide however. It seems to be very promising, but it is also like with all medicines not for everyone. Anyone who is currently taking any type of narcotic containing paid medicine will have to stop taking that medicine, LDN blocks the opioid receptors in your brain and has also been used in treating heroin addiction. You will have to scroll about half way down the page to get to the place that mentions LDN, but here is a link I found containing an interview with Dr Berkson regarding LDN, http://tinyurl.com/djyldv . A big thing that jumped out at me was that anyone who is taking an immunosuppressive are cautioned to not take this. Unlike all the other treatment options most of us have heard of, this doesn’t suppress the immune system, it actually boost’s it. Meaning for most autoimmune disease patients such as myself, you would have to taper down on your normal medication and stop taking it before starting this. That can be very hard and for some life threatening! On the upside, it has been known to change lives very drastically and compared to most of the medicines out there is really very cheap, under $40 a month. For more information regarding LDN, just follow this link, http://www.lowdosenaltrexone.org/index.htm .

A drug that was identified as clofazimine and it has been around since the 1890’s! Now if that isn’t a slap in the face to anyone who has or knows someone who has an autoimmune issue! It is a small article, so I will post it here so you can all read it rather than providing a link, seriously it goes with the old saying “If it’s not broke, don’t fix it”. Things like this make me wonder just how many other treatments and cures could be right in front of us and we never know about them because the medical field is always so worried about advancements mostly I feel for their own self satisfaction. It doesn't mention anything about Crohns for the most part, but since Crohns is an autoimmune disease I am thinking in time it would also be used to help treat that. That is, if they dont "forget" about it once again. Here is the article I found, seriously I could rant about this until I turn blue in the face, so I will skip the ranting and go to the posting..!

HealthDay

By Robert Preidt

Wednesday, February 4, 2009

WEDNESDAY, Feb. 4 (HealthDay News) -- A century-old antibiotic used to treat leprosy may prove effective as a treatment for multiple sclerosis and other autoimmune diseases, Johns Hopkins researchers say.

They screened thousands of U.S. Food and Drug Administration-approved drugs and identified clofazimine, created in the 1890s, as a drug that targets a molecular pathway that plays an important role in guiding the body's immune response.

"We never expected that an old antibiotic would hit this target that has been implicated in multiple sclerosis, psoriasis and type 1 diabetes," Jun O. Liu, a professor of pharmacology and molecular science, said in a Johns Hopkins news release. "People have been working for years and spending tens of millions of dollars on developing a drug to inhibit a specific molecular target involved in these diseases, and here we have a safe, known drug that hits that target."

The study was published in the journal PLoS One.

"Until now, clofazimine's presumed target was not human cells, but bacteria. But we discovered the drug has a tremendous effect on human immune cells that are heavily involved in both the initiation and execution of an effective immune response," Liu said.

The prolonged accumulation of calcium inside of immune cells is one of the key steps involved in turning on the body's immune response. The researchers found that clofazimine blocks the flow of calcium into immune cells and tamps down the presence of calcium in the cells, actions that short-circuit the signaling pathway involved in autoimmune diseases.

HealthDay

Copyright (c) 2009 ScoutNews, LLC. All rights reserved.


That is all for this post, I will return again soon, Take care everyone.

Crohn's and emotion

I thought this time I would talk about the emotional feelings that come with having Crohns or any life long illness in general. Keeping a positive out look and laughter have to be better than any medicine out there in life yet they seriously seem to be the hardest to hang on to. When i first finally got diagnosed, the best thing I had ever heard come out of a Dr's mouth was "This can be controlled and before you know it you will be living a normal life". Well, I wont say that was a complete lie... but I will have to say that he sure did sugar it alot! I have still been unlucky and can't seem to reach remission. For the most part what I am on is not helping but better than nothing I guess. Crohns is so complicated and so many people have so many differences in thier "main symptoms" it can be very hard to find out what medicine is the right one for you and your body vs. all the rest. As we fight the on going "what medicine will finally work" phase, we all have our moments of anger and we all shed many tears. The main thing we all need is something to focus on, be that a game, TV, or in my case reaching out to the world in blog form. There are many things that we can do to change our emotions. Sometimes finally letting it all come out in tear form can be good tho, don't ever hold back your emotions for too long or they will come back to haunt you and tears can turn to anger in no time. Since being diagnosed with Crohns I have let my frustration get the better of me alot and in doing so have managed to learn alot about controlling these emotions and letting them out in a better way. First of all, you have to find out what triggers your emotions to go from bad to worse. For me, it can be something as simple as someone asking me how I feel on a really bad day and I go from sad to mad in .5 seconds due to frustration. When you find yourself at this point, you have to remind yourself that they care, people who care is a good thing so don't let that make you mad. I know all to well that common question seems to hit a nerve in alot of people because we are always sick in one way or another and for us to say "I feel great today" is usually going to be either a lie or alot of sarcasm. I don't mean that anyone should sit there and go into great detail and complain, but it is good to be open and honest. Just by telling someone "better than yesterday" or "not the best but I'm dealing with it and I'm in a good mood" can let them know that you acknowledge the fact that they care. Here is another great emotional roller coaster, one moment you feel fine then out of no where you are running to the bathroom ready to throw up or better yet waking up in the middle of the night with sharp pain. After that is all said and done, you find yourself torn between screaming at the next anything that finds its way to you or rolling into a ball form and balling your eyes out. Crohn's symptoms seem to give us that torn feeling alot. Best advice ever: make sure you have a book close to you and ignore both of these emotions at that very moment and just start reading and put yourself in a different place all together! When emotions hit hard and fast they make us all want to have a total temper tantrum. In fact I am sure to begin with I could have made any normal two year old look like a very mature adult. I mention reading first because it makes us use our imagination and while doing so we are automatically unable to dwell on anything else. If you are not into reading that much then turn on the TV and even if nothing good is on, just looking for something can get your mind away from the temper tantrum stage and help calm you down a bit. Since you are here reading this I will also add, get online and find something to do because the choices online are ENDLESS!! Online games, jokes, videos, music, ideas for crafts, gardens, and that is only a few to get you thinking. I know the sad to mad ping pong ball feeling very well, it seems those 2 emotions are a big part of day to day life when you are not feeling well. Sometimes it is best as I said above, just lay down and cry if you don't feel like talking to someone. I sometimes feel as if all I do is complain in one way or another so half the time when I want to talk about it I wont, so I grab a pillow and cry on its shoulder... and yes, sometimes I put my face in it and scream for as long as I can. It gets the emotion out without any bad side effects and I promise that you will feel like a new person once doing so. Well if you want to scream, be sure no one is around or you might have everyone thinking something is seriously wrong or just think that you are crazy. One last thing I would like to add before I leave this as is, keep a diary. As someone with Crohn's it is good to have a food diary to help find out just what foods trigger your symptoms the most, but I keep a Crohn's diary vs a food diary. It began with food, but I write in it about my symptoms and emotions as well. It can be hard to open up with the people around you in day to day life, but it can be very easy to open up to a simple piece of paper and a pen. I trasformed my food diary into my Crohn's diary because if I was going to write in it everyday, I might as well continue to keep it all in one place so I could then go back and read it over and over to help myself out in the future. I could talk about this forever as always but I am going to end this here for now, simply wanted to touch this subject a bit, promise there will be more on it as time goes on. Take care!

genetic autoimmune disease

Alright, so I have been doing some thinking on this and alot of us ask questions when we are first diagnosed. We want to know "why" and "how" and I am sure like myself you hear the words "genetic" and you are looking through your family tree thinking to yourself again... "how" and "why" when at first glance you never see anyone that has Crohn's disease so I am going to try to translate this often asked question into an answer by useing myself as an example. It was only about a month ago I actually had a Dr put all of this into "English" for me and actually clear it all up. No, genetic does not mean that you have had a family member with Crohn's how ever yes, when you have children their chances are higher for developing this disease. Here is my personal link to Crohn's :
Great Grandmother : Rheumatoid Arthritis - autoimmune flaw
Grandmother : Rheumatoid Arthritis - autoimmune flaw
Me : Crohn's - autoimmune flaw
So there we have it, dont look for Crohn's in general, look for any autoimmune flaw. I never made this connection in the past then it hit me out of nowhere when my Dr and I were talking about my family, he calmly said "that is where your Crohn's comes from" and I sat there like someone had hit me with a brick, like DUH right? A little more to explain exactly what it is we are all suffering from. There are 2 types of autoimmune diseases out there. There are Systemic and Localized. The Systemic autoimmune diseases will basically harm anything that is in it's path and has no main point of interest, Rheumatoid Arthritis is one of these, notice how it will effect any area of the body. Localized autoimmune diseases just target one place or organ in general but they can travel outside of that area and effect other areas around it, this my friends is where we fit in with having Crohn's. For everyones convenience I have found a list of 63 autoimmune disorders that might help you on your quest of seeking answers, also this in general is a nice site and goes over alot of concepts that I have been doing alot of thinking on as of late.
http://immunedisorders.homestead.com/auto_immune_list.html
Well, that is all I have on my mind for now, just wanted to share this with you and encourage everyone to do thier family research. Knowing more about your past and your family blood lines is always a good step in finding more out about yourself. Take care.

Dave Barry article....

Some of you might have seen this and some of you might not have, either way it is worth reading again and again! This should always make you laugh!

Dave Barry's colonoscopy journal:
======================
I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy.

A few days later, in his office, Andy showed me a color diagram of the colon,a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis .

Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner.

I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, 'HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!'

I left Andy' s office with some written instructions, and a prescription for a product called 'MoviPrep,' which comes in a box large enough to hold a microwave oven.

I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America 's enemies.

I spent the next several days productively sitting around being nervous.

Then, on the day before my colonoscopy, I began my preparation.

In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor.Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with luke warm water.(For those unfamiliar with the metric system, a liter is about 32 gallons).Then you have to drink the whole jug. This takes about an hour, becauseMoviPrep tastes - and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, 'a loose, watery bowel movement may result.'

This is kind of like saying that after you jump off your roof, you may experience contact with the ground.

MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but: have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

After an action-packed evening, I finally got to sleep.

The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, 'What if I spurt on Andy?' How do you apologize to a friend for something like that?Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Then a nurse named Eddie put a little needle in a vein in my left hand.Ordinarily I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep.

At first I was ticked off that I hadn't thought of this is, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house.

When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point.

Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand.

There was music playing in the room, and I realized that the song was 'Dancing Queen' by ABBA. I remarked to Andy that, of all the songs that could be playing during this particular procedure, 'Dancing Queen' had to be the least appropriate.

'You want me to turn it up?' said Andy, from somewhere behind me.

'Ha ha,' I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.

I have no idea. Really. I slept through it. One moment, ABBA was yelling 'Dancing Queen, feel the beat of the tambourine,' and the next moment, I was back in the other room, waking up in a very mellow mood.

Andy was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.

ABOUT THE WRITER
Dave Barry is a Pulitzer Prize-winning humor columnist for the Miami Herald.

Crohn's Disease VS Living Life

To begin with let me introduce myself. My name is Michelle and I am 24 years old now. I have only been diagnosed a little over a year and I must say things seem to go from bad to good then make a 90 degree U-turn all over again. I am writing this in hopes of helping others by simply telling my story thus far. Some of you might find this useless but I really hope you all can find it as a way of relating to me and to each other. For so long I felt all alone and just wished that I could find someone who understood what this was like not just more facts. Facts are everywhere, but this is not only fact but my way of saying, I understand and if anyone wishes to contact me as a friend then let me know. I am sure anyone who is here or will eventually be here either has Crohns or knows someone who does. I must say, it’s not a fun thing to live with.
I began getting sick when I was 15 and in high school. That to me was when everything I thought I knew about my life began to change. We all go to a doctor in hopes of finding an answer or a simple cure, what I got was usually an anti-depressant or some other “brain numbing” pill and a Dr that would say I was just trying to skip school. I suppose I “picked” an unlucky time to become sick because that is back when all the “depression hurts” signs and such started to come out. Somewhere between never holding down food and having unexplained aches and pains, I got diagnosed as a “typical teenage girl”. After almost a year of fighting through school I finally dropped out, not the best thing to do and most defiantly not something I am proud of but at least the Dr couldn’t tell me I was trying to skip anymore! (I will however add that I did get my GED and got a VERY high score on it :) ) The next couple years that followed still didn’t gain me much ground in the way of convincing a Dr that I did have a serious physical illness; simple put I think I know every anti-depressant, anti-stress, anti-anxiety, etc pill out there now due to Drs that didn’t want to take me seriously.

It was when I was 22 I finally decided something had to change or I’d never be able to live a normal life. I woke up out of a dead sleep with unbelievable pain in my right side. I’ll never forget that night for as long as I live! I was in tears and it wasn’t just the pain. That night I laid there thinking about all the stupid pills I had been on and my Dr’s favorite phrase “your cup is only half full, you won’t get better until we fill it completely”. As soon as I knew the office was open, I called in and set up another appointment. If you don’t already have a good clue to what I got that time, then let me tell you… a new “mind numbing” pill. As desperate as I was for relief I told myself, maybe the Dr is right, maybe I am just crazy or depressed or something, so I, once again, took the pills. After about a month of these new pills and waking up in the middle of the night in horrible pain I guess you could say this is where I had my first true breakdown. I woke up like before, the pain and frustration was so bad I thought for a moment I was seriously going insane! I knew if it was going to kill me like appendicitis then I should have been dead by then so all I could do was cry…and scream… and yes I admit it I even thru a few things that night. I knew going to the ER would be pointless seeing as they knew me by name at that point in time. So once again I called first thing in the morning to my Dr’s office.
This is where my story begins to take a turn for the better. I went in to see him that day. As always he was sitting there telling me that my blood tests had always been for the most part normal, a little high here or there but nothing too outrageous. He then starts talking about that stupid cup and how full it was… I guess I lost all control over my temper and well, I just started telling him every little pain I had, how I woke up in the night out of a dead sleep, how no matter what I ate made me sick, and how lately during the day the pain in my right side had become a daily issue I had to live with. I called him everything in the book and even told him that his cup was about to become little pieces shattered on the floor if he didn’t wake up and take me seriously. I think I actually scared him because up until this point I had just sat back and took his advice no matter how much what he said got to me. He just sat there for a few moments and looked really shocked, then you could actually see the little light bulb go off above his head like in a cartoon. For the first time in my life, I heard the words “you have Crohn’s disease”! Then it was my turn to look shocked and after all I went through I had to ask… “What kind of brain disorder is that?” He then laughed and explained to me what it really was and what test’s I would have to go through to get a true diagnosis. It took a total of 7 months for the G.I. Dr to finally accept it was Crohns and get me to the proper tests. Yes, if we haven’t concluded yet, the Dr’s we have around here are not the best at jumping into anything. So for 7 months I got put on heartburn pills and other upset stomach pills. Finally the big day came though, as I was prepped for the colonoscopy I was scared of what it might or might not show. After all these years of wondering what was making me sick, I couldn’t help but wonder if I really was crazy and maybe it was all in my head.

When I finally woke up, I simple asked the G.I. Dr if it was indeed Crohn’s and he simple replied yes. After having to fight with him for 7 months to get to that part all I wanted to do was get to the treatment process and start forming a normal life. I couldn’t help but notice a slight look of regret on his face also, guess it finally hit him that for 7 months he had in some form tortured me himself.
That was all done in February of 2008, a little over a year ago. I now sit here wondering what is next in my future. The medicine I am now on is well… better than nothing but not the best. The medicine that worked the best is far too expensive and well not for long term usage. I am now seeing a new family Dr that is giving 100% at trying to help me out. Since being diagnosed, I have went through 3 family Dr’s. The one who first told me about Crohns left the office, the other one I just recently got rid of. If anyone here has been on Prednisone or anything like it then we all know it is something you can’t just stop taking and it took her 3 weeks to refill it…. Anything you have heard about adrenal shock is very true! After that I knew I had to get a new Dr AGAIN. I am due to get another colonoscopy soon and must say once again I am worried, I know that with all the pain I am still having that nothing good can be shown. I still have not been able to return to work full time so needless to say this is trying to control my life. I try to push on though, one day at a time. It is hard to open up to people I care about the most. When they ask me “what’s wrong” or “are you ok” sometimes I just feel like screaming or giving them a really sarcastic answer. The up’s and down’s are normal I guess.

Now that I have told my story, I want to add a few things. Crohns can only control you if you don’t fight for control. Fight the Dr’s and fight the depression. Fight the anger and fight the confusion. Make yourself get lost in something you enjoy. You don’t have to go climb a mountain if you don’t want to leave the house. Play an online game or work a puzzle. There is always something out there to make yourself feel better, you just have to find it. I will be working on this blog more and more and hope to add a few links and ideas to this category simply because there are so many ways of making a person feel better. Laughter really is the best medicine out there so I hope everyone comes back and checks this again. I’m not here to give you facts as I said above, I just hope to help someone out there because by coming together we might all feel better physically and emotionally!