Category Archives: Living with the Disease

Find a quote and use it as inspiration – #NHBPM


 

Day 2 – This is an easy one.  I had previously posted about songs that relate to me and my dealings with Crohn’s.   One singer that I find weirdly connected with is Kelly Clarkson.  Her gripe is love, mine is CD.  Both are a love/hate relationship.

So, the quote I pick as my inspiration comes from one of her songs – “What doesn’t kill you makes you stronger”.   Now, I know she didn’t coin the phrase but I just relate to it so much more with her music  🙂 .  As you know from my last post, I had it bad last year.  I was in pain, couldn’t get out of the bathroom, was depressed and really didn’t want to continue.   Looking back over the past year and seeing how far I have gotten, that pain really made me stronger.  It helped me learn more about my disease.  It helped me to connect with a lot of great people I would never have met otherwise.    Most of all, the pain I had turned me into a health activist.  A year ago I would never have thought about blogging.

I have talked about how many people helped to inspire me to do what I am doing.  Truth is, they helped me on my recovery which was the first step.  Without getting sick though, I would never have started the journey.  In the past I was content to say “I have Crohn’s Disease.  It’s an inflammation of the intestines that makes me go to the bathroom more than normal people.”  That is it because that is all I knew about it.  Now I can say “I have Crohn’s Disease but more specific I have Crohn’s Colitis.”  I can go on for hours talking about my disease now.  I have gained so much knowledge about it.  I am on experimental medicine thanks to all the research I have done.

What doesn’t kill you makes you stronger.  Such a powerful quote.  At times last year it felt like I was dying.  At times I wanted to die.  Instead though, my disease made me stronger.  Kelly – thank you for showing me that there is always more to life.  I am a fighter and will never be alone now with my disease.

“What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
What doesn’t kill you makes a fighter
Footsteps even lighter
Doesn’t mean I’m over cause you’re gone

What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone” – Lyrics from What Doesn’t Kill You by Kelly Clarkson

Why I Write About My Health


National Health Blog Post Month!

So here is my first of many posts for Wegohealth.com National Health Blog Post Month.  The challenge for this is to blog about different things (they give us the topics) every day for a month.  So here is my first post and the topic is Why I Write About My Health.

It all started in 2011.  I was going through the worst flare up of my Crohn’s Disease in my life.  I was going to the bathroom a good 30 times a day and really couldn’t live my life.  I had been on numerous medicines throughout my life for my Crohn’s but nothing seemed to really help me.  By the time January 2012 came around, depression had set in.  I felt so alone with my disease and felt like I had no one to turn to.  I knew very little about my disease and knew no one with it.

I was diagnosed in 1988 and didn’t have the internet back then.  Whatever I learned about the disease came from outdated books and pamphlets.  For most of my life I survived and got through my problems.  My disease never really interfered with my life so I let it be.  Now, that it was taking over my life, I didn’t know where to turn to.

Like most people with problems, I turned to the internet.  In all honesty, I was so bad I thought I was going to need surgery and was looking up just what an ostomy bag was.  I had never seen one before and knew nothing about it.  I wanted to prepare myself mentally for what I thought was to come.  My first searches took me to YouTube where I found some great videos from other people with Crohns.  The people I found in these videos would go on to be my inspiration.

One thing these fellow Crohnies showed me was that no matter how bad things were, we could overcome the bad times.  I soon realized that I had ignored the internet all these years.  I started doing more searches and found so many websites.  I then turned to one of the biggest social networks out there, Facebook.  I started to see how people were coming together with their disease and helping each other.  I thought back over my life and wished that I had something like this growing up.  It was then that I decided I wanted to help out.  I made up my mind that I wanted to help others out and let everyone out there with IBD know that they don’t have to be alone like I was.

My first attempt was to make some videos but this wasn’t for me.  I felt very awkward talking to a camera.  I also couldn’t interact with anyone doing this.  So, I decided to write instead of talking and turned to Tumblr.  This was fine for a little while but I soon learned that the site was more for sharing Memes.  Finally I turned to WordPress and now I have this website.  I have my own space to share my experiences and a place for others to feel comfortable to open up about their experiences.

Here it is now at the end of 2012.  I have come a long way in such a short time.  My main goal from the start has not changed though and that is why I write about my health……I don’t ever want anyone with IBD to feel alone.

UCLA Center for Inflammatory Bowel Diseases


Recently I was contacted by a member of the UCLA Center for Inflammatory Bowel Diseases on Twitter.  They wanted to do a small guest post.   I felt honored to be approached by such a prestigious center.  Of course I said yes.  For anyone that doesn’t know what UCLA is, it is a very big university in the USA.  The letters stand for University of California – Los Angeles.  The website to the center is here http://www.uclaibd.com. You might have seen articles about the work they did.  Recently they have created some programs to help in communication between doctors and patients, which is what they briefly wanted to write about.  So, without further adieu, here is their guest post.

 

“In its summer 2012 issue, the Crohn’s Advocate did a cover story on how the digital age is transforming patients’ self-management of their disease. “The 21st Century Patient: Managing Crohn’s in a Digital World,” talks about online health management platforms that provide patients with direct access to their health information so that they can take action on it. If you’re as excited about the idea of being actively involved in the management of your health as we are then we’d like to tell you how we think it can work.

Our UCLA Center for Inflammatory Bowel Diseases and Rochester General Health System were the two online health management platforms featured in the Crohn’s Advocate article. Both of our platforms enable your medical teams to capture, store and share information about your health with you electronically and in real-time. Using such systems, you and your medical team are able to track how your health is progressing and adjust treatment and care accordingly with real data to support those decisions. We see this as a big shift in patients’ participation in their own care and where healthcare is heading in the future.

Our Homecare program at the UCLA Center for Inflammatory Diseases provides patients with an online patient care portal that they can access via the iPad or their home computer. One of our goals in the program is to make it as easy as possible for patients to access the portal anywhere and at any time for their health information and to communicate with their care team via email or online chat. Firm believers that our patients are co-owner of the care delivery process, we have developed a program that puts the tools in patients’ hands to manage their own health. Using the online portal, our program participants can access their medication information, clinic visits and lab schedules, answer questionnaires about various aspects of their health, and review resources about Crohn’s disease and ulcerative colitis.  The information provided by our program participants along with test results are continually monitored by our team of inflammatory bowel diseases (IBD) specialists to ensure that treatments are going according to plan and any health concerns are addressed in a timely manner in between office visits so they do not become bigger issues. Our Homecare program also provide support tools for participants to address aspects of their lives that might be affected by their illness such as mental health, work or school and social life.

 We’re excited by a future in which patients can work with their doctors and nurses to actively management their illness and achieve better health. We hope to see systems like ours and Rochester General Health Systems be made available to every patient with Crohn’s disease and ulcerative colitis.”

 

Now normally, I wouldn’t post anything else with a guest post..but I wanted to touch a little on this.  I have actually started using a program similar to what they are talking about, which is also featured in the Crohn’s Advocate article.  I think the direction that the great minds at UCLA Center for IBD are taking  are wonderful and is the wave of the future.  In my advice, if your doctor isn’t using any form of digital platforms then it doesn’t hurt to ask them about it.  If they are part of a big university or hospital then you can ask the head of the dept or even the patient care advocate.  The more we pressure the medical community to be on our side, the more they will help us.

I want to thank Lam Nguyen for the post from UCLA Center for IBD.  Please take the time to look over their site.  You can also follow the center on Twitter at @UCLAibd.  There are also links on their homepage to their facebook page, YouTube page, and other sites.  Feel free to drop them a line and let them know how good a job they are doing for us.

Dark Side – Part 2


Yesterday I wrote about analyzing Kelly Clarkson’s song Dark Side and how it relates to my disease.  I wanted to really open up, but then I closed up and didn’t really put down in words what I wanted to say.  Yes, I felt a connection to the song but I didn’t really explain to well how I have that connection.  I never really said what I felt my dark side was.

This was going through my head and then last night I read a post in a Facebook group that I belong to.  I really made me think of one of my dark sides to the disease.  I got to thinking and actually shared my story that I have kept inside for a number of years now…and it felt good to get it out. 

The post was about how this person had to stop on the side of the road to “relieve herself”.  She felt ashamed to have to do this and I could see the pain in her words.  Now anyone with Crohn’s disease knows this is normal and probably most of us has at one time had real bowel emergencies and have done things they wouldn’t normally do.  I reassured the poster that what she did was normal for us and that she is just one of us.   Other people spoke up and she then commented that she felt better thanks to her family (meaning everyone posting).   Her pain made me think of my dark side story and I shared it with her.   I wasn’t worried about it getting out as it is a closed group and everyone keeps the stories there.  Now you are thinking I just told her story..but I am keeping all names out of this so as not to embarrass anyone. 

So, now I bet you are wondering…what was my story.  I thought about it long and hard and I didnt’ know if I was ready to let this one out into the general public.   But I guess I should take my own advice…we have all been there.  For any Crohnie reading this…I am sure you know just how I felt at the time.  For anyone without IBD reading this…just know, we all go through this problem.

First a little back story to mine.  What brought this on was someone saying they had to go to the bathroom on the side of the road because they had to go and there were no bathrooms around.  For many people this is easy to imagine.  I have been on interstates where there are nothing but trees lining the road for miles.  For me though, I grew up in NYC.  Every highway has numerous exits with plenty of bathrooms to go to.  The only time I would think about squatting on the side of the road is when there is an accident and the traffic isn’t moving.  But my time did come and I wasn’t on a highway or interstate.   I was walking.  It was early morning and nothing was open.  I was heading to my bus and then the “Urge” came on.  I knew I didn’t have time to turn around and go home.  If I did I would be really late to work.  The only building close by with a bathroom was the library..and it was closed.  I knew I was going to have an “accident”.  And then my mind raced.   Off to my right was a wooded area with a lot of trees.  I knew that if I went into the area, no one would probably see me.  I was feet from the sidewalk but being early morning, no one was around.  I had seconds to make a decision.  So I headed into the brush, squatted and did what I had to do.  Luckily I had my emergency toilet paper with me.  After I was done, I tried to cover it up as best I could, made sure the coast was clear, and continued on to my bus. 

I felt so ashamed of what I did.  I knew it wasn’t the worst thing as everything left behind was biodegradable.  Also, the creatures that luck around (racoons, squirrels, etc) do this everyday.  But I felt like this was not normal.  Yes cavemen used to do this, but we have plumbing now.  It stayed on my mind all day.  Over the years I would think back to that day and remember how low I felt.  It has always been my dirty little secret.  When I read the post last night, I thought of the story again and felt like it was time to get in off my chest. 

So now you know some of my secrets and part of my Dark Side.  It feels good and theraputic to tell the story and get it off my chest.  My main purpose for telling it though is to not help relieve my thoughts.  I made some peace with what I did long ago.  My real purpose is to help others with this damn disease.  It is to show them that we are all the same and have the same problems.  Like I have stated so many times before….you are not alone with your disease.  For all my Crohnie brother’s and sister’s, don’t ever be embarressed by your disease.  Most of what you go through is normal.  We have all been there at one point.

Dark Side – What is Yours?


There’s a place that I know,it’s not pretty there and few have ever gone.  If i show it to you nowwill it make you run away, or will you stay even if it hurts.  Even if I try to push you out will you return?  And remind me who I really am. Please remind me who I really am 

Kelly Clarkson’s songs always seem very personal.  She reaches down into her soul to find lyrics and they come out as great songs.   From the first time I heard the song “Dark Side”  I was hooked on it.  I could hear the pain in her voice and can tell she had real emotions to this song. 
 
It wasn’t until I heard the song a couple of times that I started thinking about it.  I remember I was on the subway pulling into the Times Square stop when it hit me.  Kelly was talking about not having a boyfriend in the song, but that wasn’t my dark side.  My dark side, like so many other things in my life lately, had to do with my Crohn’s Disease.  I replayed the song on my Ipod and relistened to the words thinking about my dark side.
 
So much of my disease is kept inside me.  There is so much that I hide away from everyone.  No one in my life, not even my wife, truly knows every feeling I have when it comes to my disease.  Kelly’s words started to ring true to me.  If I tell all to my friends and family…will they just run away?  Or will they stay and remind me who I really am?
 
Of course that brings on more thoughts….who am I really?  Am I a person with a disease or am I a disease trying to live a life?  I think a lot of people with a chronic illness think and feel this.  Over time the disease starts to take over and forms our lives.  Eventually, we lose sight of who we are and tend to think of ourselves as our disease.  I personally like to think I am more than the disease.  I have a life, am married, and hold a job.  I have been lucky to not let my disease become my life.  For some though this isn’t true though.  I know when I was a teenager, I didn’t know what I was going to do with my life.  I thought, what can I do for a living when I constantly have to run to the bathroom?  No one knew of these thoughts though.  Back then my dark side started to form.  Over time, it grew bigger and bigger.
 
But….the song does continue…….
 
like a diamond from black dust, it’s hard to know what can become if you give up.  So don’t give up on me,  please remind me who I really am.

After a diagnosis, we don’t know what we will become…especially when we are diagnosed at a young age.  We think…can I live my life?  Will I have a life?  Will people like and love me?  Will I be able to work or go to school?  And usually, even when we get that diagnosis, we are still sick.  After saying those questions to ourselves we sometimes want to give up.  We are at our most vulnerable. 
 
I chose not to give up early on.  After battling my disease for a year I decided I was going to take hold of my life.  I wanted to go to college and get a job afterwards.  My family helped me make this decision and showed me who I really am.  I wanted to become a chef and they stood behind me.  They drove me to look at colleges.  They helped me with the applications.  They stood by me every step of the way.    For that I am very thankful. 
 
So, as I am sitting on my bus heading home…listening to the song a third time, I think about my dark side.  Since my diagnosis as a teenager, I have hidden a lot away.  So many feelings and emotions.  Thoughts and despair .  Some of them I have shown you on here.  Some I still hide away.  I don’t know if I will ever get all my feelings out, mainly I don’t know if I could ever really show that dark side of my life.  I do know, that what I have shown so far had done a lot for me and for some other people with IBD.  My thoughts have made myself and others stronger…but that is another song. 

One Really Cool Website


Recently, I was going through my bookmarks and I saw one I made for a website which I hadn’t been to in a while.  I clicked the link and when I got there, I saw there were a bunch of changes and all for the better.  I saw there were new people to link up with and I began exploring a great site that I remember loving when I first joined.
The website I am talking about is http://www.Crohnology.com.  Crohnology is a social health network for people with Crohn’s & Colitis to share and learn what treatments work, meet others near them, and track and share their health.  It is a fairly new site and has been featured in numerous places including the Summer 2012 edition of Crohn’s Advocate.

So what is the site all about.  Well, first off, everyone on the site has IBD.  So whoever you talk to will be able to understand just what you are talking about.  Second, you can look on a map and find people in your area.  You can see who is taking the same meds as you, or have had the same surgery’s.  You can ask questions to everyone regardless if you are following them.  You can also write blogs on there and share them with everyone.

So what makes this different from other sites.  Well, for one thing, the guy that started it, Sean Ahrens, has Crohn’s disease.  He understands what we go through and molds his site to those needs.  The other uniqueness is the map feature.  On most sites you don’t know where anyone is from unless they tell you.  From the moment you sign on, you can see all the people who live near you.  There is also a feature where you can create a Meet Up so you can plan a get together.

Right now, it is still in its infancy so expect to see more great things from them.  I can see them being a leading social website for people with IBD.  No one there will judge you.  They all have gone through the pain that we have at one point and many are there to help you through the rough time.  I know because I have had some questions answered there myself.

I look forward to seeing what the next year brings for this great website.  So, after you are finished reading my blog, head on over and join up.  You won’t be disappointed.  You can also find them on Twitter @Crohnology and on Facebook https://www.facebook.com/Crohnology

Guest Post: Sarah


Imagine this scenario: It’s 7:15 am and your phone is ringing.  It’s a principal, asking if you’re available for work that day.  “Sure,” you reply, knowing that if you don’t take the day of work, you won’t be getting paid for that day.  “School starts at 8:30, see you soon!”  You hop in the shower, eat your breakfast, get your lunch packed, and oh – maybe my Crohn’s is acting up a bit this morning.  You’re hoping that you can get everything out of your system before you leave for work.  After all, you’re working in a school you’ve never been to before.  You have no idea when you’ll have a break to go to the washroom.  You have no idea where the washrooms are.  You have no idea what students you will have or whether or not you will have a friendly teacher nearby who could “be so kind as to watch my class for a couple of minutes.”  But it’s okay, you’re starting to feel a little bit better, so you finish packing up and leave your place at 8 am for school.  You’re almost there and you start to feel that recognizable grumble in your stomach.  You start thinking, “Do I have time to stop at a coffee shop on my way to school to use the restroom? Can I hold it until I’m at school? Will I even be able to find the bathroom there?”  Welcome to my life.

 I’m a young teacher with Crohn’s going into my third year of teaching.  For the first year of my teaching career, I was lucky enough to have a full year contract.  I was able to teach the same groups of children every day, be in my own classroom, get to know the staff and have a familiar environment and routine.  For the past year and a bit, I have been doing what most new teachers have to do – supply teaching. 

 As most of you can imagine, teaching in an elementary or secondary school is not an ideal job for Crohn’s sufferers.  You’re in class for up to two hours at a time, as well as standing outside for yard duty a few times per week, and you’re not allowed to leave the children alone. You have a limited number of sick days and you’re responsible for planning the days when you’re away.  Not that Crohnies who work in other environments have better sick days, but at least their morning isn’t spent thinking up a lesson that is manageable for someone who doesn’t know your students and school routines. 

 Crohn’s is unpredictable.  Teaching is unpredictable.  Not the best combination.  When I was applying for teacher’s college and teaching jobs, however, this thought didn’t even cross my mind.  I didn’t want my Crohn’s to affect what I did with my life – why should I limit myself to a desk job if my passion is working with children in a classroom setting?  When I would get asked, “Are you worried about your health with teaching?” I would respond with, “Sure, but it’s what I want to do.”

 My choice to stick with teaching has left me with a few obstacles which I must continuously work on. 

 As a contract teacher, I was at the same school every day.  I had a great daily routine – I could wake up, eat, clear my bowels, and move on with my day.  Knowing the routine, if I felt my tummy rumblin’, I could check the clock and I knew when the bells would ring and when I could quickly make it to the nearest restroom! 

 As everyone with Crohn’s has probably had experience with, even when we talk about Crohn’s with co-workers or friends, a lot of people don’t understand what we’re dealing with.  Working with the same group of teachers throughout the year, I felt I was able to open up more about my illness.  For the most part, the staff at my school were very understanding of the illness.  The closest staff members to my classroom knew that, on occasion, I may pop my head in and say, “Watch my kids!” while I sprinted down the hall to the staff room washroom.  They knew my situation a little bit and weren’t surprised when things like this happened. 

 I also had many dealings with my principal about my Crohn’s.  The schedule of the teacher, being very much an 8:30 am – 3:30 pm type of job, doesn’t always allow for easy scheduling of appointments.  My teaching contract was in a small town 2 hours away from my GI.  In order to make it to an appointment, I would have to take a whole day off work.  My principal was very understanding every time I had to take a sick day for a doctor’s appointments or colonoscopy, but I always felt like I was wasting my sick days on appointments. Shouldn’t I be using these sick days when I actually am feeling sick, instead of when I need to go for testing or checkups? 

 With Crohn’s, we also all know that a lot can change throughout the course of a year.  September and October of 2010 in my classroom were great.  In November, the stress of the job, being away from my family and friends, and the unpredictability of my Crohn’s, made my health go downhill.  As I look back now, almost two years later, I still wonder how I survived November and December of 2010.  I was waking up at all hours of the night to use the washroom, I was making an hourly trip to the washroom between every class, I had lost 15 pounds, and I wasn’t eating well, especially during the day because I was worried of having to make even more frequent trips to the washroom.  After all, I can’t leave my students alone in the classroom.  Meanwhile, I was trying to plan entertaining lessons for my students, mark assignments and tests, and write report cards.  I had to work my hardest at staying energetic in the classroom, knowing that I hadn’t slept through the night in weeks. 

 Coming back after a much needed Christmas break, my new double dose of Humira and my large quantities of prednisone were keeping me on track.  Many people did notice the puffy face – but I guess that is a small price to pay for feeling healthy. 

 The rest of the year went as smoothly as I could have hoped for my first year of teaching.  My health stayed on track for the most part and I planned, marked, and taught my way to the end of June.  I had survived my first year of teaching full time.

 Since that full time contract, I have been put back into a supply (or substitute) teaching environment.  I am basically on call every teaching day and replace teachers when they are sick or when they have a meeting.  When I walk into a new “work” environment every day, I’m forced to meet new staff, learn new routines, and figure out a new environment.  This, on its own, is a stressful situation.  Add in a group of students and a full day of activities, and you’ve got yourself a normal day in my life. 

 Maybe being a supply teacher, though not an ideal job since I’m not working every day, has been a blessing in disguise for me this past year.  I am a strong believer that everything happens for a reason and I think this has been a good chance for my Crohn’s to settle down.  Being on call, I know that if I’m feeling sick on any given day or have had a bad night, I don’t need to accept any teaching work.  And when I do need to teach and have to have that awkward, “Will you watch my class for a couple of minutes while I run to the washroom?” moment, I just have to think to myself, “Well, everyone has to poop.  And for me it’s just right now.  I have a reason, and it’s ok.” 

 While there are many challenges to being a teacher with Crohn’s disease, I think I’m proof that it can be done.  As with any job, I think it’s a matter of knowing your routines, your environment, and your co-workers, and finding a way to make your job work for you. 

 

You can check out Sarah’s blog about the novels she reads at http://www.bookstacksarah.blogspot.ca

You can also follow her on twitter @Sarah_Bo_Bera

LDN – End of Week 1


Today marks the first day of my second week on Low Dose Naltrexone.  Looking back over the past week I have noticed just how rough I have had it.

First off, I just want to say, I am not trying to scare anyone off of this med.  I knew of the side effects going in and still proceeded.  I knew I was going to have the problems I am having so it isn’t like they were unexpected.  Before anyone starts any med, you should do your research and learn all you can about it.

With that said, my main side effect right now is insomnia.  What is weird though, is that I can’t tell if I am sleeping or awake.  I feel like I am in an in between state at times.  I am conscious of the time, yet I am having some weird dreams that seem real (another side effect I had heard off).  I know I dream normally I just never remember them.  On this med though, I am very conscious of my dreams and they seem like just thoughts in my head.  Like today for example.  I dreamt that I was part of the gang on the TV show How I Met Your Mother.   Lily and Marshall had bought a restaurant in Bushwick, Brooklyn and it was failing.  I sat there with them after closing to offer my professional advice on why it was failing.  Everything seemed so real to me..but hello…it is a TV show.  They aren’t real.  It is so hard to describe the feelings on here.   Also, throughout the dream, I am conscious of tossing and turning and being up throughout the night.

So, that is by far the biggest and worst side effect that I have.  But, in turn, it is causing others that I don’t like.  I have noticed my personality has changed for the worse.  I am more irritable and nasty.  I have a low tolerance and seem to get pissed off very easily now.  I know this is caused from not sleeping well.  I try to catch myself when I get in the bad mood but it is so hard to do anything.  I am just so tired all the time that I am at the point of not caring about what I say or do.

I am a fighter.  I don’t give in to things easily.  This is just another challenge for me and I won’t give in to this either.  I know this is temporary.  In another couple of weeks, things should normalize and I should start sleeping again.  I know there is an end to this.  It is that hope that keeps me going.  This isn’t permanent.

So like I said in the beginning, I am not trying to scare anyone.  All of my symptoms right now are normal for the drug.  I wasn’t prepared for the reality of it but I move on.  I don’t let it stop me.  We IBDers….we are all fighters.  Many people have gone through worse situations.  Just know, that if any of you choose to go on LDN, it is a rough road in the beginning, but from what I am told, it is worth it.  I hope to find this out myself real soon.

World Ostomy Day


A fellow activist asked if I could post something about World Ostomy Day and I thought, why didn’t I think of this.  I don’t have an ostomy but many of my online buddies do and my father in law did also.

So, on Oct 6, 2012, the world will be celebrating those people with ostomies.  Go out and help spread the word and if you have one, show it off.  Be loud and proud.

There are a bunch of things going on sponsored by the UOAA (United Ostomy Association of America, Inc) and can be found on their website here  http://www.ostomy.org/wod_2012_promotions.shtml

If you can’t celebrate in the real world, you can do it in the virtual world.  One group on Facebook  is throwing a virtual picnic.  It can be found here  https://www.facebook.com/events/424515670918844/
To everyone with an appliance – you are strong and brave.  Show off your beauty on Saturday and let the world know that you won’t go down fighting.

Life on LDN – Week 1


Well, it has been 4 full days on Low Dose Naltrexone (LDN) and I thought I would give everyone an update. 

From what I was reading online I guess a lot of people build up to the normal dosing.  Sadly, since my GI didn’t know too much about the drug, I went right to the full dose of 4.5 mg.  I have had some side effects from it but nothing I can’t handle.

The first major side effect is insomnia.  The medicine kicks in around 3 in the morning and gets the endorphins jumping.  That is what wakes you up and keeps you up.  For 4 nights now I haven’t had much sleep.  Once my body gets used to the drug this should stop and I can not wait for that to occur.

Another side effect some people get on the 4.5 mg dose is a headache and I have had some on and off.  It isn’t so bad and I haven’t even thought about taking Tylenol for it.  Another side effect which I have read about are nausea and lack of appetite.  I get this later on in the day around late afternoon and night time.  Hopefully this too will go away.

Overall, I don’t feel normal right now.  I have been very irritable and agitated but I think this is due to the lack of sleep.  I am not my normal self and even my wife has noticed it, but more important is that I have noticed it.

As far as the Crohn’s go, I haven’t had it bad so I can’t say there is an improvement, but it hasn’t gotten worse.  I have had a little more gas but I don’t know if that is because I am getting better or worse.

So…..for the first week, I am having a rough time of it, but I won’t give up or give in.  I am a fighter and will keep going.  Hopefully week 2 will be better and I can get some rest.  The weekend is upon us so I can rest a little.