Category Archives: Advocacy

The Health Activist’s Writers Month Challenge – Day 21 Adversity


“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan True or false? When do you bloom best?

Adversity –  a state, condition, or instance of serious or continued difficulty or adverse fortune (Definition from Merriam-Webster online dictionary)

 

I had to read the prompt a couple of times just to make sure I was understanding this correctly.  I then looked up adversity to make sure I understood the definition correctly (I did).    So basically if you deal with and grow with adversity, you are great.   Thank you for that complement Mulan….was it the actual woman that said it or the Disney character??  Just wondering.

I say all of this because I think someone with a chronic incurable disease has serious or continued difficulty all their life.  I have met so many people now with IBD that have it rough every day.  For some, there is no break in the pain.  For many of us with IBD, living with the difficulty isn’t adversity…it is life.  It becomes who we are.  So yes, these people are very beautiful…and strong..and brave.  They fight their fights and continue to move on with their lives.  That is why I refer to them as IBD Warriors. 

But when do I bloom.  Well, I don’t live the life of chronic pain.  My Crohn’s is mostly under control and manageable.  I am lucky.  But there are times when adversity hits.  I bloom when that adversity does hit.  I look my challenges in the eyes and tell it that I won’t let it stop me.  I am strong and will fight on.  I will never let adversity stop me.   So what if I have to go to the bathroom 30 times a day.  I make the best of it and enjoy the time I am not in there.  So what if you make me nauseous and weak.  That just means I can rest up and catch up on some sleep.    And the best part is that I get to talk with my community and that helps give me the strength to fight adversity.

We are a community of doers.  When the fight comes to one of us, we band together and help each other.  We don’t let one person stand alone.  When adversity hits one of us, it hits all of us.  Instead of being the lone flower in the desert trying to open up, we are like a jungle.  When one of us blooms, we all open up so no one is alone.

The Health Activist’s Writers Month Challenge – Day 20 Burnout


What gets you OUT of the pit of despair when nothing is going your way?

 

This topic got me thinking a lot.  Well, more or reminiscing.  It wasn’t that long ago that I was at my burnout point.  January 2012.  By now if you are a regular reader you know the date.

There I was, constantly running to the bathroom, dealing with cramps, having no appetite and ready to give in.  I was sinking into depression and wanted an end to it all.  Well, not all…I didn’t want to committ suicide..but it did enter my mind.  What I wanted was to be done with my Crohn’s.  I wanted to call my dr and tell him to yank my colon out.  I had had enough.  No meds were working.  I saw no relief ahead and I had no fight left in me.

Basically, I was burned out.  Over the years I have had some depression every now and then.  There were days where I had no energy and didn’t want to get out of bed.  Everytime that brick wall hit, I would just try to keep positive thoughts and would get myself out of my funk quickly.

This time around was different.  I couldn’t think of any reason to go one.  I was dealing with too many emotions and couldn’t handle it.  I felt like a crash test dummy hitting the wall at 100 mph.  My body was giving up and so was I.

And then, as many of you know, I found myself.  I found my voice.  Basically, I found my community.  Where I saw no future for myself, I now saw warriors fighting back and saying “I won’t give up”.  I watched videos from Sara, Kelly and Maggie (you know the names by now) and they showed me that I CAN’T give in.  My life was worth so much more than my disease.

Over the past year I have been doing pretty well.  There have been some times when the diseaes brings me down and I jump back to my community.  So the answer to what gets me out of despair….is YOU.  My IBD community.  Whether it is on Twitter, a group on Facebook or some posting on a IBD website.  My fellow Crohnies (and UCers) help me recover and get my sense of worth back.

Thank You.

The Health Activist’s Writers Month Challenge – Day 15 Sharing


Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link back to them to let them know you were inspired.

 

I follow the following person on Twitter and she is an amazing woman.  When I read this post, I saw just how tough she is with her disease.  Here is her post:

http://youngcrohns.wordpress.com/2013/04/12/day-twelve-hindsight/comment-page-1/#comment-117

And here is my response to her post:

This is such a great post. It took me back to my days of being in the hospital sick to the point that I didn’t want to get out of bed. When I got diagnosed, I had no clue what CD or UC were. For you it must have been really scary since you had experience with it already.

Reading your post also made me see just how much has changed over the years. When I got diagnosed IBD wasn’t really known. There weren’t many meds to take. If I wanted information, I had to go to the library because there was no internet. When you got diagnosed, it seems like they kind of knew before the tests what you had. You can then reach out for help via the internet.

I am not saying that IBD is a good thing to have because it isn’t but this is a real good time in history to be diagnosed because there are so many resources, meds, support structures, etc to help us get through this damn disease.

Last, I just want to say, I agree with your last statements. Things are going to happen no matter what. I think we need to just live life and deal with whatever occurs. You are a strong woman. You won’t let your disease stop you. You truly are a IBD Warrior. Thank you for being an inspiration…and an online friend.

The Health Activist’s Writers Month Challenge – Day 14 Spread the Love


Thank a few of your fellow Health Activists for what they have done. Call them out by name or twitter handle. Share your love.

This is more of a repeat of day 4.  I have talked about resources then and linked up to a lot of great sites.  I have talked previously about some of the people who are inspirational to me.  I have mentioned many people over the past year.  But in the spirit of this challenge, I will do it again.  Some of these names may seem very familiar.  Some might be new to you.  What I do want to say though is not everyone I mention will have IBD.  Most will, but there have been some inspiring people who have other illnesses.

Sara Ringer – http://www.inflamed-and-untamed.com/ –  @Sara_Ringer

Kelly Fricke – youtube.com/user/Kellbear2…   –  @SickGirlDiary

 Amanda Kasper – http://stopthinkingstartwriting.blogspot.com –    @Akasper513

Adam Scheuer – http://www.ihaveuc.com/ –   @IhaveUC

Marisa Troy – http://keepingthingsinsideisbadformyhealth.wordpress.com/ –   @MarisaTroy

Brian Greenberg – http://www.intenseintestines.org/  –  @BrianIIF

Sean Ahrens – http://crohnology.com/ – @seanahrens

Wade S – http://wadeszworld.tumblr.com  –   @WadeszWorld

Sarah Choueiry – thecrohnsjourneyfoundation.org  –  @SarahChoueiry

Michael A Weiss – http://www.hospitalpatient.com  – @hospitalpatient

Jackie Z – http://www.bloodpooptears.com – @JackieZimm

Ryan Stevens – http://www.crohnsguy.com/ – @ryan_crohnsguy

Alyssa Zeldenrust – loveformutantguts.wordpress.com  – @UnstuffedAlyssa

Charis Kirk – http://fullfrontalostomy.com/ – @OstomyLife

Julie – http://www.semicolongirl.com/ – @SemiColonGirl

Sharon Saeed – https://www.facebook.com/groups/ibdjourneys/  and also http://www.ibdjourneys.com/

Ok, so I know I will probably piss some people off, but this list can go on forever.  If I didn’t add you, I am sorry.  It is no reflection on you.  In fact, I probably just couldn’t think of everyone, so if you would like me to add you, send me an email to aguywithcrohns@gmail.com with your info and I will review it.  If I like it, and I most likely will, I can always add you onto the list.

The Health Activist’s Writers Month Challenge – Day 13 Haiku


 Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)

 

Well, I am not a poet.  When it comes to poems, I am a roses are red, violets are blue kind of guy.  I am not any good at making them..let alone creating a haiku.  Sadly, I won’t even attempt it but that is probably for the better.  I will spare you the agony.  But I will keep to the theme a little today with creating my version of the acrostic.  It isn’t a poem but it will have to do.  I decided to just make some words associted with my disease.  Some of you will understand them, some others might not.  I also know some of you will cringe at some of the words as I did typing them.  Enjoy

Chronic

Resection

Ostomies

Humira

Never Ending

Small Bowel

 

Drugs

Intestines

Strictures

Endoscopy

Anemia

Sulfasalazine

Entocort

The Health Activist’s Writers Month Challenge – Day 12 Hindsight


If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?

 

This is a pretty powerful prompt today.  If I could go back in time to talk to myself, my whole life would be different.

First, I was never really scared so I would be there to calm myself.  I think the biggest thing that was going through my head was just wondering what was wrong.  I remember just when I got my diagnoses.  I remember sitting in my bed, being handed some pamphlets and just having a blank stare of bewilderment.  This was all new to me and I had never heard of Ulcerative Colitis or Crohn’s Disease.  I think I was more confused than scared which caused me to deny what I had.

So if I had a future me to talk to, I think it would have been great.  I would sit with myself and explain just what it is I have and how it is going to affect me.  I would explain to myself in basic terms what it is that I have and correct the initial diagnoses.  I remember being told I had UC, because later on when I found a regular GI, not a Pedi GI, he would tell me I have CD because he saw it in my ileum. 

Next I would explain to myself that I am not alone.   I went through life for many years not knowing or talking to anyone that had IBD.  I felt very alone in the world with my disease.  This past year and a half I have met hundreds of people with IBD and I now know I am not alone.  Now of course I was diagnosed pre-internet so I still would have to wait to really meet everyone.  I would however encourage myself to get more involved with CCFA.

Lastly, I would prepare myself for the meds.  I have not had success with medicine and I it has cause a lot of frustration and stress on myself.  I would prepare myself for this.

Now, I know many people would think that if they could go back in time and talk to themselves, that they would probably do most of the same things.  But I would do one more thing.  I would guide myself in job choices and give myself some winning lottery numbers.  Come on, if I could go back in time, I might as well make it worth my while 🙂

 

We Interrupt Your Regularly Scheduled Programming….


I hadn’t planned on adding anything this month since I am doing the Writers Challenge and posting a post a day.  But I had an idea and I want to put this out there to get some help.

 

This goes out to anyone reading this that has IBD.  If you don’t have IBD, you can ignore this post 🙂

 

Ok….now that the normal people are gone, we can talk about them.  He he. 

 

What I am needing from my IBD community are some photo’s.  I am planning on making a video for World IBD Day and an idea hit.  Since so many of us were upset over CCFA’s handling of our condition in their advertising, I want to do a video to show just what it is truly like to have IBD.  So, I need pictures of you at your worst.  Do you have a bad moon-faced?  Do you have pictures of your hospital stay?  Maybe you have a stoma you want to show off.  I want to make a nice collage of them in a video. 

I will also need some triumph pictures but the majority that I need are the downside pictures.  If you have some you would like to send, please mail them to aguywithcrohns@gmail.com.  If you want yourself mentioned in the picture, please give me your name, twitter handle, website address, blog address, date of diagnoses and what condition you have.

 

Thank you everyone for your help.  I now return you to our regular programming.

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.

The Health Activist Writer’s Month Challange – Day 6 Letters


Write a letter to your condition – what do you want to get off your chest?

Dear Crohn’s;

We have known each other for about 25 years now.  We have had some good days and we have had some bad days.  We have laughed together and we have cried.  Well, this letter is to put you on notice.

I have learned a lot since the early days.  I remember when we were first introduced to each other.  It was at L.I.J. hospital and I was just a scared teenager.  I thought I was going to be sick forever and then the doctor told me about you.  After bothering me for the next 2 years, we called a truce and you left me alone for my college years.  I was very thankful for that.  What I didn’t like was that you never told me about yourself.  You remained a mystery to me and I never really got to know you.

Flash forward many years to the year 2010.  For some time now we were reintroduced and you have given me trouble, but I had learned to live with you.  Then tragedy struck.  Your cousin, Ulcerative Colitis, was very cruel and took my father in law from us.  This hurt me very deeply.  To add to the hurt, you decided to start causing trouble.  For 2011, there was nothing but pain and despair with you.  You were nothing but cruel to me.  I wanted you gone once and for all.

Little did I know that the pain you were causing would help change my life.  When you gave me my darkest days in January 2012, I would see my life change.  Your cruelty would cause so much joy in my life.  Something awoke inside of me and I decided to finally learn about you.  I did my research and while doing that I got to meet some of the greatest people in the world.  Not only do they live with your relatives, but they would be some of the most inspirational people I would get to know.  They would show me that you don’t run my life but I do.  No matter how hard you try to cause me problems, I would no longer let you.

These people you forced me to meet, and I am thankful for that, would give me the strength to fight back.  They would show me that the foods you wanted me to eat were not good for me and my health, so I would change.  I know you don’t like me being gluten-free because you won’t survive.  Sorry, but I have to look after my health.

I know you loved all the meds I was taking because they didn’t seem to hurt you, only me.  So once again, I am not sorry that you don’t like the naltrexone that I am taking.  Those people you force me to meet, well they told me that this drug would be great for me and would maybe help you make the decision to move out.  Sorry, I have to listen to them.  You have stayed here for too long.

I know have learned what you are.  I have learned that I don’t have to let you run my life.  So I am putting you on notice.  I know you will never leave me, but you have to leave me alone.  I will not take any of your “crap” anymore.