The “R” Word

Apr16

According to Ali G it is Respek. According to another IBD blogger, Mary Claire, it would be Resiliency. For me it is bigger then both of those words put together. This week, I heard the “R” word officially for the first time since getting Crohn’s Disease…Remission. My colonoscopy was back in February and I knew I was healed more than the previous year. Sadly the pictures didn’t save so I couldn’t actually see the results. This week was my first appointment with my GI since then. After a little chit-chat and a quick exam, he went on his computer, pulled up the scope results, and mentioned how there was no Crohn’s activity and that I was in remission.

Needless to say I was a little shocked. I knew I was doing well. I don’t show many symptoms these days. I didn’t know I was completely in remission though. I was so happy. But like all things, the moment has now passed. Of course, I am still happy, but just because the Crohn’s is in remission, doesn’t mean I still don’t get symptoms. Because this is such a nasty disease, even if my intestines are healed, I can still show signs of the damn disease.

The first sign is my joint pains. Both my knees and my knuckles get bad arthritic pain at times. Then there are the mouth sores that come on at any given time. Next are the skin problems like rashes and pimples. The list can go on and on.

But what does remission mean..to me. Well, it actually means a lot to me. For the first time in a long time, my medicine is working. After years of throwing poisonous medicine into my body without any results, I switched over to a non-conventional drug. 2 years after starting the med, I am in remission. I would say it is working perfectly and scientist really need to start studying the role Naltrexone can play in IBD. Another great thing in all this is that my doctor is also convinced that LDN works and might start giving it to other patients. I was his first and his guinea pig. I would say the test has been successful.

Another thing this means to me is that diet does in fact play a role in IBD. For years I ate what I wanted and never healed up. Along with the change in meds, I also went gluten-free. It has been a bumpy road in my gluten-free journey and I really have to fight some cravings every now and then. But ultimately it really has helped in my healing process.

Now, please just know, I am not saying that if everyone took LDN and went GF that they would achieve remission. Everyone is different. What works for one person not might work for someone else. My results may not be typical. I don’t know since there are no studies showing a correlation. So please, don’t stop your current therapies to try mine just because I got results. Whatever you are doing might give you the results you need. If you are not there yet, be patient.

So for now I will sit back and enjoy what this word means to me because I know like so many others know…that this feeling can go away at any minute.

The Great Experiment Part 2

Jan4

Last January I was in a nasty flare. I was going to the bathroom 30 times a day. I was obese with high cholesterol and high blood sugar. My body was a mess and I wasn’t treating it nicely. So, I decided to make some changes as many of you already know. I joined Weight Watchers to lose weight, which I was pretty good with. For the year I lost about 30 lbs. I also went Gluten-Free to help with my Crohn’s. I wanted to give my intestines a rest from the harsh fiber of wheat. Also, this was supposed to help in reducing my blood sugar levels. Lastly, and this happened later in the year, I switched meds. I went off Humira and started Low Dose Naltrexone.

For the most part everything was working well. I achieved what seemed like remission. I lost weight. I feel good and healthier. I was finally on the right track. And then it all came to a crashing halt. The Dreaded Holidays!!! Anyone that knows me knows I like to eat. Well, the holidays give me that opportunity. Pecan Pie, Pumpkin Pie, Chocolate covered anything. With New Years Eve, there is a lot of eating, then some drinking, then some more eating and yes, more drinking.

Well, it is now January 2013. My weight has been fine and I don’t think I have gained too much weight back as my clothes still fit. However, the past week or so I have been going to the bathroom more. I am not feeling as healthy as I should and I know the reason. I have been putting garbage into my body again and have completely looked away from eating right. I am now paying for it.

So now I know that diet most definitely plays a part in IBD. Today is Friday night. This weekend is my last hurrah. As of Monday I start up my experiment with nutrition and IBD and get back to eating correctly. I am going back onto the Weight Watchers plan. I am going to stop putting nasty chemicals into my body. I am going to start treating my body like it should be treated.

A lot of people still say that nutrition means nothing when it comes to IBD. I think I might have proven this past year that it does. When I ate healthy with all natural products I was doing great. When I started eating junk again, I felt like I was on the verge of a flare. I have learned a lot in 2012 and I know that I need to stop NOW. I need to practice what I preach.

So I will continue on my journey come Monday. I won’t look back. I won’t second guess myself and I won’t regret it for one minute. I want to be completely healthy. I want others to look and me and say, “If he can do it, then anyone can” because I couldn’t do it for so many years. I denied the nutrition connection and ignored my weight.

The holidays are done. My denial is over. I had my fill and now I need to continue my journey and my experiment. Welcome to Jeff 2.0. Time to take all I have learned and put it into practice. And there is nothing better on a journey than some company…so Who Is With Me?

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

Nov20

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

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

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

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

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

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

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

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

Day 5 – Write a #ListOf3 Things that you’re thankful for / excited about / or inspired by

Nov5

For today’s post I had the choice to write about a Health Activist Soapbox or this…and I think a lot of people will choose the soapbox so I am going with this one.
List of 3 things. Oy. Where to start. I think of talking about 3 of one topic I will talk about one of each topic.

Topic 1 – What am I thankful for? Very strong question and with Thanksgiving just around the corner this is on my mind. I have gone through so much this past year and there is so much to be thankful for. The most recent thing is that I made it through hurricane Sandy without major issues. I can say I am still alive and in pretty good health. I have a job in times when unemployment is high. But my answer to this question…I am thankful for my doctor. First..if you haven’t yet, go read my previous blog on day 3……….ok, your back. Now you know where I am going. I am thankful for my GI doctor. So many patients have doctors that don’t listen and worst off don’t care. A lot of docs just seem to go through the motions and don’t seem real invested in your health. My doctor though is different. He listens. Not just to what I have to say but he listens to my advice. He doesn’t spew advice from medical books. Instead he bases his thoughts on current research. Recently I wanted off Humira and wanted to try out Low Dose Naltrexone. He had no experience with the med, knew nothing about it as a treatment for Crohn’s, yet he did his own research, listened to my concerns and decided to work with me on a solution to healing my Crohn’s. I don’t know if the medicine will help or even if I will be able to tolerate it long-term but my doc is letting me experiment with it and he is learning at the same time. He is great for all that he does and I can tell that if he takes the time to do research for me then he is doing it for other patients also. And for these reasons I am very thankful to have found him.

Topic 2 – What am I excited about? This up coming year I am excited for so much. First, instead of walking in the Take Steps walk I want to volunteer. I want to be able to give back some. Also, I am not great at fund-raising so this is my way of helping out my cause. I am excited to work at the walk and talk with others affected with IBD. But my excitement doesn’t end there. In 2013, for the first time, I want to volunteer my time at Camp Oasis. This is a camp that is held for a week in the summer for kids with IBD. Most of the staff and medical team have IBD and the kids can look up to them and see that there is hope to living a normal life. This is the reason I became a health activist. I grew up alone with my disease. This year I said to myself that I didn’t want anyone to have to go through what I did. I wanted to help people, especially the kids know that they are not alone. What better way to do this than to talk directly with them at Camp Oasis. I hear so many stories from people on how much fun it is working there. I want to finally experience this joy and if all goes well..I will. Just thinking about it now gets me excited.

Topic 3 – What has inspired you? For me it isn’t a what but who. Again, if you read my blogs, you probably know this answer already. So go ahead and look back over my previous blogs. If you don’t have time, just look at the guest post I did for WEGO Health. All the names are there. Sara, Kelly, Maggie, Charis, Jackie. These were just the first batch of people to truly inspire me to speak up and do what I now do. As time goes on, I have met other people and heard their stories. Now I have other people inspiring me….Alyssa, Pat, Amanda, Michael, Peter, Claire, and so many others. Now, I don’t want to put last names because I don’t know who wants their name out there..but if you run in the circles I run in, you probably know these names.

Day 3 #NHBPM – A Conversation with my Doctor

Nov3

Day 3 – I like this topic. I have talked about this one also but I would love to reshare it because it can give people hope.

About 3 months ago, I decided I wanted off Humira. I was getting really bad psoriasis on my legs and it was starting to spread to my stomach. I had had enough. I knew the conversation with my GI doc was going to be rough. First, I have been on pretty much every type of medicine out there so there wasn’t really anything left for me to try. Second…what doctor wants to hear that a patient is refusing their current treatment.

I did a lot of research beforehand on a new drug therapy and I decided that I wanted to try Low Dose Naltrexone or LDN. It has been gaining popularity within the IBD community for having great results with little to no side effects. That was what I needed because I seem to get all the side effects. The main problem though is that it is not a standard treatment for Crohn’s right now and is still considered experimental. I felt like I had tried all the conventional therapies so maybe it was time for something new. I printed out some information and a case study done on the drug and brought it with me to my appt.

Needless to say, the morning of my GI appt, I was very nervous. I didn’t know what my doc would say or think. He started out talking to me about how I am and then did his exam. Then we got down to brass tactics. I told him I was at the point where I need to control the psoriasis first rather than the CD so I wanted off Humira. Before he could talk me out of it, I went into suggesting LDN to him. He then told me he was familiar with the drug (as a low dose form) and he doesn’t currently have any patients on it and he has never used it. My heart sank. But…(wait, did he say but..) he would do some research into it and let me know within a week. I was shocked at this. I have never had a doctor say he would research something just for me. I think every doc should do this for every patient…I just never had it done before. All my past doctors were know it all docs who didn’t want to hear anything.

I was so excited. I was going off Humira, had a doctor that cared, and might get something that will really help me. A week went by…and I heard nothing. I knew my doc was going on vacation so I gave him another week. After 2 weeks, I messaged him and he told me that he would do it. YEAH!!!

When I went back to him about another 2 weeks later to get my script, we talked a little. Now I never gave him the information I had because I didn’t want to be pushy and scare him. When he said he would do the research, I knew he would find the same info. I however brought it with me again just in case. He did admit that this was all new to him and he wasn’t even sure just how much to prescribe. Thankfully I did my research and was able to help him with that. After I told him…he then says that the dosage matched what they used in the study. I think he really knew and was testing me to see if I really looked into the med. Gothcha doc 🙂 So we talked a little more about this and afterwards I got my script.

I walked out of his office head held high. I was in new territory now and was proud of myself for sticking to my guns. But what I learned from all of this is that you should never ever ever be afraid to talk to your doctor. I think your treatments should be a 2 way street. You should have as much say as your doctor. I have been very lucky to have found such a great, caring and resourceful doctor. He is open to suggestions and doesn’t think that he knows it all.

And that is my message to everyone. Talk to your doctor. Sometime they will be stubborn and when they get like that, insist some more. Don’t ever back down or give in. Remember, your body is your body…not theirs. You know your body best and how you react to things. Make your voice heard. And if your doctor won’t listen to you…find another one. They truly are a dime a dozen.

LDN – End of Week 2

Oct7

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

Oct2

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

Sep28

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

Sep25

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.

Inspiratation – Where do you find it?

Aug6

Recently, I watched a video from a fellow IBDer and she was talking about seeing other people do amazing things like running races and she was at a point in her life where she couldn’t do those things because of her fight with IBD. I wrote her a letter to help cheer her up and as I was writing it, I realized how much of an inspiration she really had been to me. She was one of the first people I watched on YouTube when I started flaring last year. She showed me that even though we have a chronic illness and it can affect us greatly at times….we should still live our lives.

When I wrote her, I also came to another realization. I have never had a mentor in my life. Whenever I had started a new job, so one ever took me under their wing. I never really had anyone I could say that I truly looked up to. But, she really changed my life and I always find myself looking at what she is doing and try to be a little like her or more specifically, try to be like her in helping people with IBD. To this end, she has kind of been like a mentor to me even though she didn’t know it.

Now, she isn’t the only one that has inspired me. There are so many people out there and if you look back over my blog, you will see who they are. Some of them I have written about. Others, I have included in my “Follow Friday’s”. There are so many great people out there advocating and giving me inspiration to get on with my life.

Recently, I have been starting to flare again and I felt some depression setting in. As usual, I started to withdraw within myself like I used to. But then I saw that video and wrote my online friend. I wrote her to cheer her up but it also was very therapeutic to me. I was able to get some things off my chest. Realizing how much of an inspiration she was in the past, helped to inspire me again. So, I am back fighting again.

Next week is a big part of the battle for me. I see my GI and I will be asking him to switch my meds from Humira to LDN. Since this isn’t a typical treatment for Crohn’s just yet, it will be a battle, but I am ready. If I let the depression sink in, I wouldn’t be able to have the conversation with my GI and argue it effectively. But thanks to my inspiration..I am going in guns blazing.

So, now I ask…..who are your inspiration. I would really love to hear back from you on who inspires you. Whether it is just to continue your fight with IBD, or someone who pushes you to blog, or helps you to get out and about with your life. Is your inspiration a person, a group of people, or a website?

I want to leave you with a quote I found online about inspiration:

“Inspiration is like picking up one of those blinky things in a video game that makes you invincible for a while. You can do anything, go anywhere, and you don’t have to worry about it.

Those blinky things exist in real life too. It may be a picture, or some words, or a sound, or an idea, or a mistake, or a moment. Whatever it is, pick it up and run with it. Run with it like you stole it.

You can’t bottle up inspiration. You can’t put it in a ziplock, toss it in the freezer, and fish it out later. It’s instantly perishable if you don’t eat it while it’s fresh.

Inspiration is a magical thing, a productivity multiplier, a motivator. But it won’t wait for you. Inspiration is a now thing. If it grabs you, grab it right back and put it to work.”

And just incase you are reading this and trying to figure out who my inspiration is…I wasn’t going to say because I don’t like to mention people’s names on here …but it is Sara from Inflamed and Untamed.