Tag Archives: IBD

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 🙂

 

The Health Activist’s Writers Month Challenge – Day 11 Favorites


Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I can remember being a kid growing up in the 1980’s.  We would spend the day outside playing with our friends and having fun.  After school we would come home and actually do homework.  If we behaved we got to watch about an hour or two of television before going to bed.  Things were simple and fun.

Now, I can’t imagine not having a computer and on top of that, not having social media.  After I boot up my computer and checking emails, the first sites I go to are social media.  If I have a question or problem, I no longer Google them, but go to a group online and ask away.

But what is my favorite?  Honestly I don’t know.  I spend most of my time when I am home on Facebook.  I have met many people on there and belong to a number of groups…some IBD related, some not.  I was thinking of mentioning some of the groups but then I realized that they are closed groups so the people running them might not want me to mention them.  So I won’t.  But if you have IBD, just do a search and you will find a lot of groups that deal with IBD.  I have met so many great people from these groups and they really have helped me to deal with my disease.  It is the one thing that was always missing from my life…meeting people with my disease.

Another great thing about Facebook is that it is Real Time.  You can chat with people instantly.  Not only have I met some great people, but I have talked with them one to one and gotten to know them better.  I have gotten to speak to some of my IBD idols and not only have they helped me out but I have been able to help them out also.  We can be there to be a pick me up for each other when needed. 

Besides Facebook, I use Twitter a lot.  Again, I have been lucky to meet a lot of people with IBD with this site.  Again, like Facebook, you can talk to someone in real-time.  The only drawback is that you are limited to the amount you can say.  A tweet has to be no more than 140 characters.  That may sound like a lot of letters but believe me, it isn’t.  There can also be a lag at times with Twitter so it isn’t always instant.

The last type of social media site I like, but don’t use as often is YouTube.  It was the site that helped get me started on my IBD journey.  It is where I got inspiration when I was sick.  It is where I learned I wasn’t alone.  It is where I met Sara, Maggie, Kelly, and many other inspirational people.  I myself tried using YouTube to start my blogging journey.  I quickly learned that I was a camera person and I can do better by typing out my thoughts.

Now, there are many more sites out there and some of you might like them.  That is fine.  I am not against sites like Pinterest or Instagram..I just don’t use them much for IBD related things.  Many people do use them so my advice is to go out and explore.  Don’t just take what I have to say as an end all.  Search the internet.  Explore around and find sites that are a good fit for you.  There are so many different websites out there.  Go out there and have some fun.  Just don’t forget to come home for dinner 🙂

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 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.