It’s Survey Time


So as some of you know I am a fan of WEGO Health and what they have to offer the medical community.  Well, starting today they are holding a survey on the online Crohn’s and Ulcerative Colitis communities.  They have asked me to share the survey to make sure that they get as many patients and caregivers involved as possible.   The survey will take about 10 minutes.  Please take the time and come here to take it..

https://www.surveymonkey.com/s/G8S8FTY.

As a thank you for the survey, WEGO Health will be making a donation to a charity of my choice.

 

Thank you for helping out.

World IBD Day 2013


HAPPY WORLD IBD DAY!!!!!!

The time has come once again for us to celebrate our disease and spread awareness.  This year I was inspired by CCFA’s poor attempt at marketing IBD.  As you know from previous posts that I was not for their Escape The Stall campaign.  I felt their campaign didn’t show just what our disease is or can do.

So, to keep this brief, I made my own video to show just what this disease is to us.  I hope you enjoy it.

 

Crohn’s Disease and Depression (Repost)


Since this is Mental Health Awareness Month I thought I would repost my thoughts on depression.  This was one of my first post I wrote when I was still using Tumblr.  I then reposted it here last year so in a sense, this is the 3rd time, but for many of you this might be the first time you see it.  I just want to add that I always say with IBD you are never alone…and that really goes with depression also.  If you are feeling depressed, please talk it out with someone.

 

It is coming up on the year mark on when I started to embrace that I have Crohn’s Disease and with it comes depression.  Depression is a big part of the disease and not something that is regularly talked about.  I never had a doctor tell me that this would be one of the side effects of Crohn’s.  It was something I have had to find out for myself and learn to deal with on my own.

Everyone diagnosed with either Crohn’s Disease or Colitis will go through some sort of depression at least once in their life time.  Anyone with the disease will probably back me up on this and can easily recall their first time experiencing it.  For most of us, it is when the doctor comes into the room and informs us of his diagnosis.  If anyone is like me, our first reaction is …”What?  What the H*LL is Crohn’s Disease (or Ulcerative Colitis)”.  After we are given the breakdown of what it is and find out it is incurable, that is when that sad feeling usually will hit.  Then we are told how we will be on meds all our lives and if it goes like when I got diagnosed, you will be told that you will have at least one surgery within our lifetime due to the disease.  That rumbling cloud that was closing in, is now over your head and pouring.  Depression will now sink in.

Now I am not saying that you will experience a curl up into a ball, never talk to anyone again, I just want to die depression.  It could just be a “Why me?” experience that last a couple of minutes.  But, it is there and truthfully, it will never really go away.

I was never one to open up to anyone with my feelings.  I have always kept them inside and dealt with things as they came.  As a kid with CD, I went to a shrink per my doctors orders and I still couldn’t open up.  I felt, no one feels the way I do, so why bitch about it.  Certainly a shrink won’t understand what I am going through..so no way will I open up to him.  I was 15 at the time and didn’t know better.

When I was in college, my first real bout of depression set in.  I went to school in Upstate New York in the Adirondack mountains.  I remember sitting in my suite, looking out the window at the snow-capped mountains in the distance.  It was such a beautiful sight and I felt so alone.  I felt like there was this gloom hanging over me.  Here I was in the prime of my life, having fun and I felt so depressed.  Eventually it would pass and I didn’t dwell on it.  I did take notice on how I felt and vowed that if it came on again I would get help.  Of course I would ignore myself.

Over the years, depression would come and go.  Last year I would experience not one but two bouts of it and it would change my life.  A day after my birthday in May 2011, my father in law, who had Colitis passed away.  He had been having problems (from what I was told) brought on from his ostomy bag.  I would learn later on after his death that it was from his internal pouch that caused his problems.  My father in law was a strong person and never let his condition get to him.  I saw him battle with IBD for years and it gave me some sort of inner strength.  We never discussed IBD which I now regret. 

His death hit me hard, but I had to be strong for my wife and mother in law.  I couldn’t let myself break down so I never really got to grieve.  For the rest of the year I would think about him and my own struggle with CD.  Then in December I got sick.  I was taking antibiotics and Metformin (for my blood sugar).  I was in bad shape from the two.  By January I was getting worse.  I would be going to the bathroom 30 times a day and in pain.  Depression again sank in.  I was at the point that I didn’t know what to do.  Med were not helping me at all.  No one knew what to do.  I was convinced my guts had finally gave up and that they were going to have to come out.  My father in law kept coming to my mind and his struggle and I fell so deep into depression.  I am 38 and have my whole life still ahead of me.  I didn’t want to end it with more problems. 

Finally, a switch clicked in my head.  It finally hit me that I have CD.  For 23 years I never really accepted it or dealt with it.  I didn’t even know what a truly had.  So I went onto the internet.  I did a lot of research.  I looked at pictures of what an ostomy bag was (first time I ever did that).  In my research, I stumbled upon some great strong women on YouTube that gave me strength.  I found a number of social websites where I found I wasn’t alone.  I finally realized just what my purpose is and what I had to do.  I was going to advocate and educate.  I wanted to help the millions of people out there with IBD.

So, here it is May 2012.  The one year anniversary of my father in laws death in upon me.  And this time, I won’t get a deep depression.  I will get strength from it.  I know he would be proud of me for what I am doing. 

I now know that depression is normal with IBD.  We all feel it.  The trick to it, is to not let it run our lives.  We must acknowledge it and get strength from it.   Sometimes, we need to seek some professional help and that is ok.  I now know that.  Sometimes, we need to take meds for the depression, and again that is ok.  It just means you are aware that you have it, and you can grow from it.

Do let depression run your life.  If you get it, acknowledge it and seek out help.  It can be professional help. It can be the help from a friend.  It can be from online…but get help.  It is normal to feel it.  Just remember you are not alone.

The Health Activist’s Writers Month Challenge – Day 25 Learning


Share something you learned from another Health Activist (that everyone should know).

First I think you need to read this post from Amanda http://stopthinkingstartwriting.blogspot.com/2013/04/we-know-our-bodies-best.html

I am using this post as a good example.  I have known Amanda from online only.  We were introduced through another activist.  When we were introduced, Amanda had been sick for some time and couldn’t seem to find a diagnosis.  She presented with symptoms of IBD but no GI could seem to find anything.

Throughout time, she would have her good days and her bad days.  But through it all Amanda would not give in.  Even when doctors would tell her nothing is wrong she would fight and look for another doctor.  Eventually some diagnoses would come it but they wouldn’t be the big one she was needing.

Now, she finally has the diagnoses she was waiting for and reason everyone should know this.  She has Mast Cell Hyperplasia (consistent with Mastocytic Enterocolitis).  Now most of you, and I was one of them, probably have never heard of these terms..but Mastocytic Enterocolitis is a form of IBD.

Many people think IBD is only Crohn’s Disease and Ulcerative Colitis.  Those are the 2 main diseases but there are others.  ME is one of those others.  I have often only talked about the former two.  Now I have another disease to learn about and possibly talk about.

I look forward to learning another form of IBD and I look forward to our newest IBD Warrior and her challenges to now beat this disease and heal up.

——————————————————————————————————————————————————–

 

This is being added after this post was already posted.

I have done some research…and was shocked to read what I did.  Turns out Mastocytic Enterocolitis (ME) isn’t IBD.  It is similar to IBS.  ME isn’t chronic and is very treatable.  Here is one link that is reputable:

http://rarediseases.info.nih.gov/gard/10176/mastocytic-enterocolitis/case/24223/case-questions

Amanda, I don’t know if maybe you were led astray by a doctor.  Just know that I and many others still care and hope you do get better.  From the looks of it, you will and real fast.  The treatment is a simple one and I wish all disease were easily treated like ME.

I am sorry if I offended anyone that took offense for me saying it was IBD.  I didn’t do the research ahead of time and just got excited that Amanda had a diagnoses.

The Health Activist’s Writers Month Challenge – Day 9 Caregiving


Patients, what advice or tips do you have for caregivers out there – professional or otherwise!

This is a good topic.  It is so good that it is a repeat of one I did last year.  So, I will pretty much repeat what I said in that post.  Also, keep in mind that I am focusing on caregiving to someone with IBD.

First, and this is one of the most important things a caregiver needs to remember, is that the person they are taking care of has the disease, not the caregiver.  The patient is most likely scared because they have an incurable illness.  What they need most of all is love, affection and some sympathy.  They are probably in constant pain and they might not ever feel “normal” again.  It is your job to help them get back to normal as best as THEY can.

Second, listen to your patient.  Don’t ever assume you know what they are going through or what they are feeling.  If they say they have pain, believe them.  Sometimes they may seem alright, but mos of the time there is pain within their gut.  Think about how you feel when you have a sunburn.  Well, Crohn’s is like a sunburn on the inside of the intestines and it is constantly being touched.

Next, don’t try to force feed them.  An appetite is a tricky thing for someone with IBD.  One day they can be nauseous and not want to eat.  Other days, they will want to pig out.  Some of this is caused by the disease, some of it caused by the meds.  Also, they are going to find that there are a bunch of foods that don’t agree with them.  If they want to try a specific diet, let them.  If they say they can’t eat a certain food….believe them.  Don’t try to make them eat something because it is healthy.  Not everything healthy is good for someone with IBD.

Your patient is not going to like the medications that they are on.  If they are taking Prednisone, there is a good chance that they will get some depression.  You should know right now, they will gain weight.  Their face will swell up and this is called a “Moon Face”.  Just let them know that it is normal, they are still beautiful and handsome, and that it is temporary.  One day they will come off the steroid and their weight will come down.  Now, sometimes if they are in a flare, they might lose weight.  Try to give them some supplemental foods like Ensure to help maintain their weight.  Don’t ever mention how skinny  they look.  They know they are losing weight and don’t want to be reminded of it.

My last advice I can give is never ever ever say they are sick.  They have a chronic illness that will be with them their whole life.  They know how they feel and they want to try to look and act normal.  To them, it is something that is now part of their life.  To them, being sick is like catching a cold or a flu.  Having IBD doesn’t mean your life ends…so why should they think they are sick.  Treat them as you would treat anyone else.  Play with them.  Talk with them.  Give them hugs and kisses.  Let them know that their life will move along and that they have nothing to be ashamed of.

And if ever you have a question, don’t be afraid to ask.  Ask a doctor.  Ask the person you are giving care to.  You can ask me.  There is also a huge community or people with their condition online.  Turn on your computer and look for them.  They will accept you and your patient into their family with no questions asked.

You are now about to embark on a great journey.  Enjoy the ride.

The Health Activist’s Writers Month Challenge – Day 7 Sensationalize!


 Share a ludicrous headline or cure. Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it. Can’t find one? Write your own.

 

Bone-marrow transplant cures girl’s inflammatory bowel disease – http://www.theglobeandmail.com/life/health-and-fitness/health/bone-marrow-transplant-cures-girls-inflammatory-bowel-disease/article6177105/

 

This article I found online from The Globe and Mail which is a site based in Toronto Canada.  To quickly sum up the article, a 4-year-old girl was suffering from numerous health issues, with IBD symptoms being one of the problem.  Doctors say she had some form of IBD, but didn’t respond to any treatment.  After doing some test they found that she had a rare mutation of her interleukin 10 receptor which is the body’s off switch for inflammation.  The way to cure this problem was to do a bone marrow transplant.  When they did this, they found that she was cured of her IBD problem.

 

Now, I don’t say this isn’t a true story.  I am sure this little girl is real, was suffering, and is now a lot healthier.  I am happy for that.  But there are things about this article that I have to hold at length.  First, the doctors say she had some sort of IBD but it seems like they don’t know what she had.  My question is why not.  I know we often get misdiagnosed, but the problem is usually a UC diagnosis that changes to CD.  This girl didn’t even get that.  So, I question did she really have a IBD problem or was it more of a body inflammation problem.

My second concern is that only 20 patients have had this procedure done.  For me, that is to little of a group to start saying that this is a cure.  For all we know, this little girl could just be in remission.  But again, if the doctors don’t know what she has, how can they say she is cured.

Now I know there are more sensational articles and blogs out there.  I chose this one because even though I question some of it…I think that there may be some truth to this and possible a real cure there.  I guess I want to believe that there is real hope for a cure for IBD.  Bone marrow transplants have become pretty common and I can only hope that one day we get it as a treatment and cure for IBD.  The future right now looks a little brighter.

Crohn’s Disease Warrior Patrol: A Charity Is Born


This is a repost from http://www.healthline.com/health-news/crohns-warrior-patrol-charity-sponsors-hospital-visits-031313  The article was written by Jaime Weinstein, a fellow online health activist

 

Crohn's Charity

No matter where you turn these days you see commercials and print ads featuring #Hashtags, links to Facebook and Twitter pages, and QR codes for corporate contests. However, social media isn’t just for advertisers; it’s for patients too.

Social networks are a means for patients living with IBD who are located across the globe to reach out to and communicate with one another. It was also the catalyst for Michael A. Weiss to create the Crohn’s Disease Warrior Patrol (CDWP).

A Beautiful Idea

In the late fall of 2012, Weiss, a lawyer, author, and long-time Crohn’s disease survivor, blogged about the need for patient support from others who understand things that only other IBD patients can. A few weeks later, Weiss was contacted via social media about meeting with a young patient named Damon, his mothers, and his older brother.

Ivy Lindsay of Comfort Ostomy Covers by Ivy was originally contacted by one of Damon’s moms to create personalized ostomy covers for Damon, who was having a hard time coping with not one but two stomas (ports in the abdomen that are used to remove waste from the body). One of Weiss’ blog readers and Facebook friends who also happens to be an IBD advocate, Jeffrey LeVine, told Lindsay to speak with Weiss about her young client.

They talked at length about the young patient and his needs, but something was still missing: another IBD patient with an ostomy whom Damon could relate to. In came Marisa Troy. LeVine introduced Troy into the fold, and few phone calls later, arrangements were made for the trio to embark on their mission to meet Damon and raise his spirits.

“Marisa was amazing with Damon and I was impressed with her ability to make him feel at ease while she was also being so candid about her own experiences,” Weiss said of Troy. You can read more about the CDWP’s inaugural visit with Damon here.

This was the kind of interaction Weiss envisioned when he blogged, “Patients helping patients is the best medicine.”

The Birth of a Non-Profit

After meeting with Damon, Weiss embarked on a quest to expand the CDWP. He wanted to create an organization to connect Crohn’s “warriors” and advocates with hospitalized IDB patients to offer them comfort and a friendly, in-person visit.

Several of Weiss’ social media contacts referred him to Alex Fair, CEO of Medstartr.com, a website that utilizes crowd funding for healthcare start-ups. With the help of Fair, a few lawyer friends, Wall Street financiers, and Foundation executives, Weiss crafted a multi-phase business plan for the CDWP and will file for Tax Exempt Status from the IRS as a Charitable Foundation under section 501(c) 3 within the next few weeks.

The CDWP: Not Just for Crohn’s Patients

The CDWP is not just for Crohn’s patients, it’s for all IBD “warriors.” And through the Medstartr initiative, Weiss is hopeful that CDWP will be embraced by IBD medical practices, psychological practitioners, hospitals, and pharmaceutical companies.

If you would like to become an IBD “warrior” helping other patients in your area, you can sign up at: http://crohnsdiseasewarriorpatrol.org/.

 

I was happy to be involved in this meeting with Damon.  I felt like my part wasn’t that big and I was just doing what needed to be done.  My original post about this can be found here https://aguywithcrohns.com/2012/12/31/goodbye-2012-hello-2013/.  

Goodbye 2012, Hello 2013


 

As we close the door to another year, I look back to see if I have grown this year.  Of course I don’t mean physically, but mentally and spiritually.  Every year I treat New Years Eve like any other day.  I haven’t made a bid deal about it in years.  This year I have changed inside and I now sit here reflecting on the person I have become.

I went into this year in the biggest flare that I have ever had.  I was depressed, in pain and living in the bathroom.  I was alone with my disease and felt like I had no one to turn to.  I now exit this year in remission, running a blog to help others and feel like I am part of the best community out there.  I am part of a group that no matter how they feel, they will still give all they can to help out others.  It is a very unselfish community and one I am proud to be in.

This past weekend I was able to contribute to this unselfish community.  An online friend who runs an ostomy cover company alerted a lot of people about a 9 yr old that was in the hospital.  He had 2 ostomies and was having a hard time with them.  Originally I was just going to donate a little bit to help cover the cost of the covers she was making for him.  When I spoke with this friend she mentioned that he was in a hospital fairly close to me.  I thought she wanted me to bring him the covers but she mentioned that maybe I could visit him.  I don’t have an ostomy so I didn’t know how much of a help I could be but I put out a call online.   2 wonderful people stepped up to the plate.  One, Michael A Weiss, is a seasoned hospital patient and is very big on patient advocacy.  The second, Marisa Troy, is an ostomate and would be able to give any information that she could. 

I was hesitant to go when I heard the kid didn’t necessarily have IBD, but after Michael and Marisa still were going, I knew I had to.  It was the right thing to do.  So Sunday, we all met at the hospital and visited one of the bravest 9 yr olds I have ever met.  It went through so much with blockages, septic shock, seizures, surgery and just the mental anguish that goes with this.  When we got there, he was sitting on a couch with his family.  He was very shy but I could see the life in his eyes.  I knew he was going to get through this ordeal.  I could see the fighter in him.  His mom’s told us his whole story and he has not had an easy life. 

After our 90 minute visit, I knew I did the right thing by going.  It felt so good.  He might not have said much and didn’t interact with us but I think we helped out his mom’s a lot.  I think we eased their minds a little and gave them not only some answers but hope.  They said that he felt so alone and now both him and his mom’s will know that no matter what, he is never alone.  There are tons of us out there willing to help….no matter what.

So I sit here looking back and I see that this year I definitely grew.  My heart and mind are bigger now.  I understand the whole “holiday spirit” thing.  Doing good things unconditionally feels great and makes me want to do more.  I ended 2012 on a great note and I hope to continue going into 2013.  I don’t know what this year will bring but I know that I still have room to grow….and I look forward to it.

 

You only get 2 feel #Humanity when U GIVE of urself.  Visit a kid in a #hospital.  http://bit.ly/UhiWFg   #26Acts

Day 21 #NHBPM – Mental Health


Yes I have Crohn’s Disease.  Yes it is a physical ailment.  That doesn’t mean it doesn’t affect our minds though.  When people hear the words mental health, many will think of diseases like schizophrenia.  However, just because we have a problem with our gut, doesn’t mean we can’t also have a problem with our mind and need some mental help.

Within my first year of being diagnosed with Crohn’s Disease, I was seeing a shrink.  I was only 16 and it was not my choice to see one.  My doctor wanted me to see him because he felt that I should be able to go to school and the reason I wasn’t going was mental.  (Nice GI dr I had).

 

Over time I have dealt with a number of issues with my disease one of which is depression.  Many people with IBD will experience depression at least once in their life, some will experience it many times.  I myself have had numerous bouts with it, the last time being the beginning of 2012.  I was so fed up with my disease and didn’t want to go on anymore.  I was spending all day in the bathroom, in constant pain, and had to sight of relief.

My problems were real, but I would soon learn that what I was going through was nothing compared to others.  What about all the people with IBD that have to have surgery for a resection or worse, have part of their intestines removed.  I can’t even start to imagine what goes through someone’s mind when they are told they will have to have an ostomy bag for the rest of their life.

Mental health is overlooked when it comes to IBD but in fact, from experience, it goes hand in hand with our psychical disease.  The problem is many GI’s are not educated on how to help.  Psychologists and psychiatrists get a bad rap, but we need to put our hands in theirs.  We must seek them out and learn to use them as much as we use a GI doctor.

There is no shame it seeing a shrink.  Just because you go to one doesn’t make you bad.  All it means is that you need some help sorting out your feelings.  And really, if it helps us feel better, isn’t it worth it.

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


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.