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.

Follow Friday for Oct 19th


This has been a busy week for me.  Three blogs in one week..wow.  I was going to hold off on this one, but I felt like I wanted to put down what was fresh in my mind.

Last night,  I had the pleasure of being in a focus group for a brand new website.  It is still in its infacy and still trying to improve itself.  But from what I see of it, it will go far.  The website I had the honor to advise on is www.meddik.com.  If you visit this right now, please please please remember that it is still being tested out so if you have problems let them know and give them some time to improve.

The site right now is based on people with Crohn’s, Colitis, and Celiac disease.  But, anyone with any medical condition can go on it.  There are posts from people with these diseases looking for help and advice.  You can ask questions or answer others.  One feature of theirs right now is that everyone for the most part is anonymous.  That was one of the features we discused in the group and this might change.

One good article about this site was written here http://mashable.com/2012/05/29/meddik-video/.   Lauren Hockenson talked with the co-founder Tim Soo and I thought this article best explains the site better than I could.  I got to meet Tim last night and he is a really outgoing overall nice guy.

Now I know there are a lot of sites out there to get info and many more social sites.  What will make this site different and better is that it will kind of work like Google.  It will find results based on your preferences.  You can filter what your needs are and it will find results that are like you and others that are realted in a sense.  Do if you put a filter to look for Crohn’s Disease, it will pull and show you posts for CD.  It will also find ones for IBD, Colitis, etc but …it will let you know how many finds are for your direct filter and how many are sort of related.

So, go check them out and let them know how you like it.  If you really have strong feelings on how to help them, you can email me and I will forward it to them.  Sometimes emails are better than a message on a website.

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 2


It has been 2 weeks now of Low Dose Naltrexone.  Looks like my body is starting to adjust to the med.  I am starting to sleep better as I am not as tired.  I still feel like I am up half the night but I think I am in some weird dream state.  As long as I can get through the day without thinking I need sleep, then I am ok.  The headaches are also going away.  YEAH!!
The big thing I am noticing now, and this could be from going off Humira, is that a lot of my body pains are back.  It is mainly muscle pains.  My biggest pain though is in my feet.  They seem achy when I am in shoes and at work, the shoes can’t come off :(  I use the orthopedic insoles and I just got new ones.  Let’s see if they help.  Also, got a massage today so let’s see if that helps the body pains.

So far, after 2 weeks, life has been good.  Still no change in my Crohn’s but since I wasn’t that bad, I might not see a difference.  I won’t know until February when I go for a colonoscopy just how well it is working.

Well, that is all for now.  Not much new to write.  Just wanted to update everyone on my journey.