Tag Archives: Crohn’s Disease

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 8 Animals


 If your health condition (or the health condition of a loved one!) was an animal, what would it be? Is it a real animal or make believe?

 

If my condition was an animal, it would have to be a grizzly bear.  Looking at him from afar and it looks so cute and cuddly.  It minds its own business and goes along its day having fun and enjoying life.

Grizzly bears are looked at to be carnivores but are really omnivores.  My crohn’s is the same.  I look like I eat tons of meat but the truth is that my crohn’s like to feed a variety of foods including fruits and veggies.

Grizzly bears have become iconic to the point that we buy little “Teddy Bears” that tend to represent them.  When you see pictures of these bears, you just want to hug and cuddle them and that is how my CD is.  Most of the time you just want to give it a nice hug.

But when a grizzly get’s mad, look out.  To protect their young, they will stand tall with outstretched arms and give out a roar.  They will do all they can to scare you and that is just how my Crohn’s is.  On the bad days, I will feel like I am dying.  My disease will make noises and it will feel like it is standing up inside me trying to rip itself free from my body.

Now, since I want to focus on the cuteness of it all, here are some pictures of one of my favorite animals.

 

 

 

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.

Health Activist Writer’s Month Challenge – Day 5 Aspiration


 “If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible?

This is a good topic because it helps me to put out there just what I want to do as far as my activism.  My goal when I started was to help out others that were in my position, which is growing up alone.  I wanted to let people know that they aren’t alone out there with their disease.  For years, because I was alone, I kind of ignored my disease.  Now that I know there is a huge community out there, I have owned up to it.

So if the sky was the limit and I could do anything I wanted….first I would create a charity (which I am slowly working to do).  The main purpose of the charity would not be to find a cure.  It wouldn’t be to unite people with IBD.  There are so many other charities that do these things.  My goal is education.  I want to help bring information about IBD to both patients and the general public.  I don’t want to say too much about my dreams as I am trying to make all this happen.

Right now, when someone gets diagnosed, the doctor briefly explains what the patient has and then leaves.  He might have some handouts that will also briefly describe the condition.  After that, the patient is on their own to do the research and seek out help.  That is where I would come in.  I want to have a way where that person can turn to the charity and have all the info they want right at their fingertips.  The info wouldn’t just be of the informative nature.  The charity would also help him connect with others both online and in real life with other IBDers.  It will help them find doctors in their area.  Basically it will be the go to be all for IBD.

Now, I know I can dream big.  Reality is so much harder.   I have been going at this alone and it isn’t easy.  So I am going to use this post as a call.   If you are reading this, and you want to get involved and be part of this great movement, let me know.  The more help I can get, the faster this dream can be a reality.

Health Activist Writer’s Month Challenge – Day 4 Sharing Resources


 Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self advocacy!

I won’t say much here today.  I am going to let my fellow activist to all the talking.  So here are some links to some great people and great sites.  Some you might know, others you are finding for the first time.  Enjoy.

Inflamed and Untamed – www.inflamed-and-untamed.com

Blood, Poop & Tears – www.bloodpooptears.com

The Great Bowel Movement – www.thegreatbowelmovement.org

The United Colon Blog – www.ucvlog.com

I Have UC – www.Ihaveuc.com

Girls with Guts – www.girls-with-guts.org

The Crohn’s and Colitis Foundation of America – www.ccfa.org

Love For Mutant Guts – www.loveformutantguts.wordpress.com

Intense Intestines – www.intenseintestines.org

Chronology – www.chrohnolgy.com

Karen Langston – Mind, Body, Soul – www.karenlangston.com

Crohns Disease Warrior Patrol – www.crohnsdiseasewarriorpatrol.org

My Journey With Crohns – http://www.myjourneywithcrohns.com

The Crohn’s Diaries: Living Sick with Inflammatory Bowel Disease – http://livingsick.com/

There are so many more that I could put down, but I would be typing for days.  So go check out these sites and from there you will find many others.  Have fun and let them know how you found them.

Health Activist Writer’s Month Challange – Day 2 Introductions


 

 Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

Hello.  My name is Jeffrey and I am a Crohnie.  Well, that is how I would imagine an introduction would go in an anonymous IBD support group.  Of course, an intro like that kind of has a negative stigmatism to it because it reminds us of intro’s used in AA which, even though it is a good group, you go there because of an addiction.

Well, having IBD is kind of like an addiction.  It is something always on our minds.  We take drugs to forget the pain we are in.  And no matter how much we want to forget about it, we seek out others who have the same so we can relate and fit in.  But, IBD is NOT bad. 

That is #1.  IBD is not something we can control and it is not contagious.   IBD is an auto-immune disease and we have no control over it.  Like many addictions, IBD is condition that happens and we have no control on how it will act.  We can try to manipulate it with medicine, exercise and diet but it will ultimately act however it wants.  It is the body attacking itself so there is nothing that will spread to someone else when you cough, sneeze or bleed.  You can’t give it to someone else.  It is a genetic disorder that needs a lot more understanding.

#2 – People with IBD at times are in a lot of pain.  There are different types of disease under the IBD umbrella.  They all act differently and there are different severities to them.  But over time,  anyone with IBD will experience pain.  The worst thing about this is that the casual observer may not know this as you can’t tell just by looking at someone.   People with IBD get good at hiding their pain so you might not know just how much pain they are experiencing.  But know, it is there.

#3 – A lot of people with IBD feel alone. They don’t know anyone else with the disease and because it isn’t a well-known disease, no one understands what they are going through.   This lead me to my activism.  I grew up alone and in the dark with my Crohn’s.  There was no internet.  It was hard to find information about IBD, let alone meet people who had it.  Now with our global community, I have taken to the web to let as many people with IBD know that You Are Not Alone.  Within the past year I have learned so much about my disease and met so many great people.  This is the main reason I do what I do.  I don’t want anyone to grow up in the dark.  Whether you are 8 or 68, you are not alone with your disease.

#4 – IBD is not a death sentence.  Many people with IBD feel like their life is over.  For some that spend months at a time in a hospital, living a normal life seems impossible.  For some, they have to live with a stoma and feel like they can’t live like that.  From what I have seen and learned this past year, you can live a great life.  IBD does not kill.  I know I can get into a debate over this because IBD can cause other problems, which in turn can kill a person….but IBD alone will not end your life.  You will survive.   I recall words from a fellow activist who is currently struggling herself “You are strong, you can do this.  You are a fighter”.   IBD can and will cause depression but just know that you will live and get on with your life.  Try not to focus on the past and all the problems.  Instead try to look at what you want to do with your life and try to make it happen.  Baby steps.  Don’t try it all at once.  But you will find that if you make the attempt, you just might succeed.  The more you focus on the good, the less you will think about the bad.

#5 – IT IS NOT YOUR FAULT!!!!  I think everyone with IBD at one point in their life looks in a mirror and asks why me.  They try to look at what they did in their life to bring on their disease.  Was it something you ate, or a procedure that you went through.  As I have stated before, this is a genetic disease.  You did nothing but be born with a gene.  Nothing you did brought on the IBD.   It just chose to rear its ugly head when it did.  I have learned that instead of asking the Why Me question, I know ask, what can I do to calm the beast.

IBD really is a bitch of a disease.  It is still largely unknown to the general public and a lot more research is needed.  We need to bring more awareness to this disease.  I speak up now to help educate others.  If you meet someone with IBD, don’t be scared of them.  Don’t ask how they are because odds are they won’t tell the truth.  Deep down, they are probably hurting.  Instead, give them a hug and be there for them.  Listen to their words. No matter the age of the person, I think we are all still a scared little kid just wanting some comfort and to know that everything is alright.

Health Activist Writer’s Month Challange – Day 1 Getting Started


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Here we go again.  Seems like just yesterday I was blogging everyday for WEGO Health.  Well, it is a new year and a new challenge.  So, without further adieu, let’s jump right into it.

 Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?

I have to say I was torn on whether to do this or not.  Last year I got burned out from writing every day and it kind of turned me off of blogging for a bit.  When I got the email for the challenge I didn’t know if I wanted to participate.  Now I read this question, and I know why I am doing this.

I got involved this year because when I blog, it isn’t always about me.  What I write is more to inform and help others.  I am doing what I do so others can learn and know that they aren’t alone with their disease.  Yes, the stories are about me and my experience but I don’t tell them to be vain or brag.  I tell my stories to inform others.  I share my experience with LDN and Gluten Free so anyone thinking about them can see what it is like.  I don’t even write to get recognition.  I just want to help.

To answer the second question..I don’t view myself as a newbie but not quite a veteran either.  I have been blogging for a little over a year now.  I have gone from not knowing anyone online to being part of a great community.  I have met so many great people and have even been told how my blog has helped them.  Since I have been blogging almost every month since starting and already doing a Writer’s Month Challenge, I can’t say I am a newbie.  For me this is now sort of repetitious.  But I do it for you, the reader.

Now that you have read this, and if you read my blog often, I want to ask you a question.  Why aren’t you participating?  Well, for some of you, maybe you are.  But for the ones that aren’t why not.  Why not start blogging yourselves.  I can say it is definitely therapeutic and helps in releasing stress.  It is a great way to meet others in the same situation.  And it is a great way to help others.    If you do have a blog,  leave me a message telling me what your site is.  Share it with everyone.  Let’s make our great community even bigger.

The Foul Bowel – A Book Review


I recently finished reading The Foul Bowel: 101 Ways to Survive and Thrive with Crohn’s by John Bradley and I have to say, if you suffer from IBD, especially Crohn’s Disease, then you must read this book. 

First let me say that it took quite awhile to read this book but that is no reflection on the books part.  I usually read my Kindle going to and from work and at night I wind down by watching TV.  So I basically read this book in some spare time or before going to bed if nothing was on TV.  So it was my own fault for taking a long time to read it. 

I actually thought this book was interesting.  It is a recap of John’s journey with Crohn’s disease from his young adult life to the present.  He talks about his numerous surgeries (13 of them) and how he deals with the disease in his life.  He learned to tailor his lifestyle around his disease instead of letting his disease run his life.  He stays upbeat throughout his struggles and always looks on bright side of life (couldn’t pass on the Monty Python reference since John is British). 

What really got me about John is that even when he was near death, he focused on the good things in life.  John is inspirational to so many people.  Even though throughout his life he suffers, he manages to hold a job, find love, and live his life.  He deals with tons of incompetent doctors all the time and still doesn’t let that slow him down.

Throughout the book John gives his words of wisdom…all 101 of them.  They are his versions of how to deal and beat this disease.  They are usually right on the money and I found myself thinking…why didn’t I think of that before.    John also uses humor to liven up his story.  Without it you would look at his life and cry for all his pain but he looks at his life and chooses to laugh.  Laughter is a source of healing and it is no wonder why John has continued to beat this disease.

Check out the website , read the reviews, then order your copy.  Then go to Twitter and let John know how much you loved the book.