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.

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.

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.

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. 

 

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.

Step out of the Norm


Today I am stepping out of my norm…and I won’t really be talking about IBD.  Today, the thing on my mind is my weight loss and a revelation that I had.

I have mentioned it in some other posts and I don’t hide the fact that I am one of those overweight people with IBD.  When you hear statistics about obesity in America…I am in those statistics.  I never saw myself as obese..but my weight told a different tale.  I am 5 Foot 8 inches and before my weight loss journey I weighed around 240 lbs.  Now I knew I was overweight and had some issues because of it.  My blood sugar was high and my cholesterol was high.  My Crohn’s Disease was out of control and I was in a flare I just couldn’t control.  I knew I had to do something.

One day everything seemed to snap into place.  I was starting to get a new outlook on life with my Crohn’s so I decided to take it another step and control my weight.  I knew this wasn’t going to be easy.  I have been overweight all my life except when I first got sick with IBD.  I knew I had to get my weight down to the 160’s so I had a long road ahead of me.  The trick to this was finding what would work for me.  I have tried eating healthy before (high fiber, whole grains) but that would just anger my CD.  The things my tummy liked were white bleached products like white rice and white bread…the unhealthy stuff.  So this time around I did some research.

At the end of January of 2012, I went Gluten Free.  This was one of the best things I have done in my life for both my health and my Crohn’s.  Besides this, I also joined Weight Watchers..for the 3rd time in my life.  I swore to myself this would be the last time.

Here it is August 2012  and I have done pretty good.  So far I have lost 25 lbs and that is now where the trouble is starting.  The gluten-free diet has been trying some days but I have managed to stay on it.  The Weight Watchers is another story.  One thing they teach you and say you should do every day is track your food.  This helps in keeping tack of your daily points for the day.  Overall I have enough points right now to keep my satisfied.  But lately, I find myself on the weekend skipping the tracking.  Needless to say for the past 2 weeks I have gained some weight back.

Now one of the things they asked us is in a meeting was what keeps you motivated.  WW has this idea of anchors.  You should find something that when you look at it or touch it..it keeps you grounded and remind you why you are doing this.  I felt I never needed an anchor.  My biggest reason for losing weight was not only my bloodwork..but it was to keep my Crohn’s in check.  That is my biggest reason and my main reason to never be overweight again.  However, these past two weeks I have pushed that out of my head and ignored my body.

Last night as I travelled home, I reflected on the past couple of weeks.  I was trying to figure out why I am self sabotaging myself.  I have been doing so well with my journey.   And then it hit me.  All my life I have been overweight.  When I look in the mirror I see a slimmed down version (although still overweight) of myself and I am starting not to recognize him.  All I know is being overweight.  Since I refuse to be that anymore…what is my life going to be like?  How will I survive?  Will I be able to maintain that life?

Some of my thoughts were a little irrational but I know they are in my head so I have acknowledged them.  Whether the thoughts are rational or not, they are there and affecting me.  So I looked into my fear in the eyes.  I stared him down.  I have been sick for too long and I swore I would get better.  So here is this monster with chains in his hands telling me to come with him.  Well…not today.  You can take those chains and find someone else, because you won’t get me anymore.

I want to be healthy.  I want to be in remission.  I want to look in a mirror and say “Damn…who is that sexy guy?”  For years I have wanted to feel like a skinny person.  Well, I am going to get that chance..one day.  I know my fears will come back and haunt me probably for the rest of my life.  But I am done being overweight.  I want to live.  I want to enjoy life.  I want to be around for a long time. 

So, my journey continues.  I have hit a fork in the road and a chose a path.  So far, it is a clear path.  I remember where I am heading and I am back on the yellow bricks again.  My companions are by my side to guide me along.

My courage helped me face those dark fears.  My brains helped me see those fears for what they were.  My heart helped in clearing a path so I can step around the fears.  And my little dog was there to lick my face and show me that everything is alright and I can continue on my way home.  So I take those first steps again on the long road home.  I will get there.  It won’t be a short trip and there will be other obstacle.  And if any of those obstacles are flying monkies..I am running.