Category Archives: Advocacy

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

Such a Loving Community I Live In


Last night I went online to check my email and saw I had a mention in Twitter.  I shot over to Twitter to see @Caringforcrohns nominated me for a Reality Blog Award.  I didn’t know what this was until I read about it, and I have to say that I am honored by it.  It just shows how much love there is in our IBD community.

reality-award1

 

Of course there is a guideline to the award.  You have to answer 5 questions which I am more than happy to do.

1. If you could change one thing what would you change?  If I could change one thing, it would be teaching doctors how to relate to patients.  A lot of doctors don’t actually listen to their patients and treat them based on how they were taught.  Many are unwilling to use non-traditional treatments or won’t use the newest methods because they don’t know about it.  Doctors need to listen to us, the patients, and if we want to try something, they should learn more about it and support us.  Support will ease our minds and this will help the healing process.

2. If you could repeat any age, what would it be? This is hard because I have learned not to dwell in the past.  But if I really have to choose, I would be 18 again.  I would love to be young and redo my college years.  They were care free days where my Crohn’s didn’t bother me that much.  I learned so much about my self that I would love to rediscover it all again.

3. What one thing really scares you?  One thing that scares me is my lack of good reactions to meds.  I don’t react well to almost all the Crohn’s meds out there so there really isn’t much for me to take.  If I fail on my current med, LDN, there is nothing for me to try next.  That means my Crohn’s can get worse and put me in a hospital.  That really scares me.  But I have to stay positive and right now, I am doing well.  There is no reason to believe this won’t last.

4. What is one dream you have not completed, and do you think you’ll be able to complete it?  One of my dreams is to open my own restaurant.  Right now, being gluten-free, I notice it is hard to eat out and I would love to open a completely GF restaurant.  I don’t know if I will ever get to do it.  The one thing that stands in my way is the money.  I need an income and don’t have the money to open my own place.  It is something I would have to work out…but maybe one day.

5. If you could be someone else for one day, who would it be?  Honestly, there is no one I would want to be.  I love being who I am and would not change it for the world.  I think everyone should like who they are and strive to be the best they can be.  Never give up on yourself.

So, enough about me.  Now the real fun is here.  I get to nominate some other people for the award.  Here are my nominations in no particular order:

Alyssa from Love For Mutant Guts – http://loveformutantguts.wordpress.com/  No matter what is going on in her life, she will tell it to you straight.  She doesn’t hold back and will even post the most unflattering pictures just to show you what this disease can do to a person.  To me that takes guts and no matter how much of them she is missing, she has tons of them.

Sara from Inflamed and Untamed –  http://www.inflamed-and-untamed.com/ Sara is probably the most recognized face of IBD.  Everyone knows her and has watched her video.  But most important is that Sara is inspirational.  She has gone through so much and still manages to hold her head high.  She manages to lift the spirits of so many people.

Kelly from http://sickgirldiary.tumblr.com/ – What can I say about Kelly. She is so young and has gone through so much.  She is yet another inspirational woman who despite all the pain she is in, she manages to give out inspiration to so many people.  She maintains her videos and website despite all that she is going through.  Anyone that knows her knows that she has a love for life that she will never give up on and I am honored to call her a friend.

Amanda from http://stopthinkingstartwriting.blogspot.com/ – Amanda is one of those people who has been sick for years yet can’t seem to get a diagnosis.  She has been in a ball in the corner of the room on the floor with no hope.  But a light went on in her and she now has nothing but inspiration for people.  Even without a diagnosis, she keeps moving through life and doesn’t let her pain stop her.

Julie from http://www.semicolongirl.com/ – Julie is such an inspiration.  Despite have a disease and despite having half a colon, she is still out there being active.  She runs a lot and just got involved with the CCFA Team Challenge run in Vegas.  She shows everyone that an illness shouldn’t slow you down no matter what.

For the nominees – here are the guidelines in accepting the award.

  1. Visit and thank the blogger who nominated you.
  2. Acknowledge that blogger on your blog and link back to them.
  3. Answer the 5 questions presented.
  4. Nominate up to 20 blogs for the award and notify them on their blogs.
  5. Copy and paste the award on your blog somewhere.

So, finally, I want to thank Caring for Crohns again for the lovely nomination.  I am loving the love I have found in our community this year and I hope that this next year brings out even more from us.

Crohns & Colitis Awareness Week – Dec 1 – Dec 7 2012


Ok, I lied in my last post.  Here is another one, but this will be short and sweet.

Starting tomorrow, we celebrate Crohn’s and Colitis Awareness Week here in the US.   So how is everyone going to show their support.  Here is one site that explains it best .  Everyone should wear something purple this week.  You can also wear one of your “Ask Me” shirts from The Great Bowel Movement, which is what I will do as I don’t really own anything purple.  If you don’t have one, come here to buy one.

Go out, have some fun, and spread the love.  While you do that, take some pictures and send them to me.  I will post as much as I can on here for everyone to see just how great we are at advocacy.

Day 30 #NHBPM – What a Journey


Here it is.  The last day of National Health Blog Post Month.  It also means the end of another month.  Seems like just yesterday I was sitting here thinking about what to write for my first post and wondering how I was going to do 30 in 30 days.

Looking back over the month I see I have come a long way.  I used to post about once a week and sometimes less than that.  I would look at my screen and not really know what to write.  It was definitely nice to have the topics given to us for the month so I didn’t have to worry about thinking about what topic to write about.

This past month has really opened my eyes.  I have read a number of stories on other blogs and have gotten to know some fellow IBDers a little better.  I also got to meet online some new people who really have some amazing stories.  One of them, Sarah, did an interview for me which was posted 2 days ago.  Sarah has come a long way in her journey and hopefully her little trip down the road will be easier now that she has our community behind her.

Speaking of journeys, I am thinking about the posts that were written about travelling with IBD.  I touched on the subject in 2 posts and actually had a lot of people without IBD reading them.  One response I got from my post on travelling was from someone with IBD and how on his bike ride through Spain he mentioned how he had to constantly stop on the side of the road.  I have heard so many of these stories lately that it has inspired me to start to help make a change in the USA. (See yesterdays post).

Not everything was happy with the posts.  I think about how open I became with my feelings.  I let out how I am still torn up inside over the loss of my father in law.  Writing about it helped me to realize that we all carry burdens with us, even when we aren’t thinking we are.   Accepting these burdens and acknowledging them help make us stronger in the end and it helps me to be a better activist.

Being an activist.  Something I never thought I would be.  In the past year though I have had the urge to help others.  My letter to new care takers is something I wish every new parent of a child with IBD would read.  It came from the heart and experience.  I was in such a dark place and no one knew it.  I had so much going on in my head that I didn’t want to share with anyone.  Now, I put it all down here for everyone to see and it truly makes me feel better.

Living stress free and free of burdens is something we all need to strive to do.  We all need to find an outlet to release our stress and my dog definitely helps.  Little Sable is such a great dog.  I don’t know how I ever lived without one before.  She can’t take away the burdens but she makes the stress just melt away.

And all of this brings me back to the first post of this series  –  Why I write about my health.  I write to relive my burdens.  I write so I can see my problems on paper and it makes it easier to tackle them.  I write to tell my story.  But most important, I write because of you.  I write for anyone that reads these post and realizes that they are not alone.

Thank you, whoever you are, for reading and possibly sharing these posts.  I hope I have eased your mind of your problems and taken some of your burdens.  I have come a long way in 30 days and have shared so much.  In 31 days, we have a new year.  Hopefully, we can lean on each other more for support and really bring our community together.  I look forward to the day when we can come together in a large crowd, stand tall, raise our hands in the air and say ” I have IBD and I am proud of it”.

Now that the month is done, I will probably take a small break from writing.  Holidays are coming and work is busy.  Life doesn’t stop though regardless of the times and if something pops into my head, you know I will be back here.  I look forward to the upcoming year and the challenges that it brings.

Day 29 #NHBPM – “If I could accomplish one thing (anything) in 2013 it would be…”


2012 is almost done and what a roller coaster ride it was this year.  I started the year in the worst flare of my life yet and I am ending it (hopefully) completely out of a flare and feeling better than I have in years.  So now that I am feeling better, what do I want to accomplish in 2013.

Wow, so many things cross my mind, but to pick one thing….for 2013 I want to help make a difference in the lives of people with IBD.  There are a number of ways to do this, but I have one big one that I am working on and I need the help with as many people as possible.  Sadly, this one thing will be limited to just the people in the United States, but for everyone else, feel free to lend some support.

I have talked with some people about my idea.  It started when I started reading stories from fellow IBDers.  I saw a pattern emerging of people having to stop on the side of the road to poop.  I myself have experienced this problem of driving on a long road to have to bathroom in site.  I know in more rural areas it is hard to have a bathroom in the middle of nowhere.  So, I got to thinking and already contacted my state senators.  I asked if it would be possible to get port-a-potties put on the side of the interstates and thruway’s.  Of course it isn’t as simple as it sounds.  A small rest area would need to be created so no one causes traffic.  But for those roads where you can go 20 miles without a rest stop or exit, this would be great.

What I would love is for anyone in America to start emailing and contacting your state representatives.  Let’s get the ball rolling.  Now I am not sure who exactly is in charge of doing something like this and would love any feedback if anyone knows.  This is a project that I can’t do alone and would love any help.  And this would be great to accomplish within 2013.  I know it is a slim chance that it will happen within a year, but I would love to show just how vocal we can all be for something we believe in.

Day 28 #NHBPM – Interview with a community member


For today’s post, I chose to interview someone I recently met in the IBD community.  She has a great website and I wanted to help spread her word around.   I won’t spend much time talking about it.  Instead, you can read the interview and explore her sight.  So without further adieu, here is Sarah from www.myjourneywithcrohns.com)

1. What is the name of your blog and how did you come up with that name?
The name of my website is called My Journey with Crohns (
www.myjourneywithcrohns.com) and what inspired me to come up with the name
was my last visit to the hospital. I was laying in that hospital bed and
was talking to my mom about it, and I said to her “Wow this is going to be
with me forever, such a journey to go through.” And from that I came up
with the name :).

2. What/who inspired you to create your blog?
My last flare/attack, which led me to my first “real” hospital stay,
inspired me to create this website. I had wished for a place I could go to
that obtained, not only a western medicine approach to treatment but
eastern, as well as stories of others who were diagnosed with crohns,
recipes, news updates, funny stories (always good to try to laugh) and more
. I also wanted a place I felt I could connect to someone who knew what I
was going through. I also had such an urge to help others who are going
through what I was going through. My heart goes out to everyone who suffers
with it because I understand how unfair it can be and I just have so much
compassion for my Crohns Community, so if I can help in any way then I will
do it. So with that, I began this website, but with that I also discovered
so many others that share their stories and tools through their own blogs.
That is the amazing thing about Crohn’s Disease, the community behind it is
incredible. That is why I also share on my web site others who have
website/blogs of their own and have their take on their experience with
crohns and things they feel they would like to share.

3. When were you first diagnosed with Crohn’s Disease and how did it
affect your life at the time?
I was diagnosed at the age of 14 but had suffered from symptoms since I was
12, after returning from a trip to Lebanon where I had got a horrible
stomach virus. If there is a connection there, who knows, but I think that
virus woke up this autoimmune disease with no off button.
In terms of it affecting my life, it definitely made being a teenager in
high school a bit more difficult. I would miss a lot of school and be asked
why I would appear to fluctuate in weight all the time. I am pretty sure
some may have thought I had issues with eating. Little did they know, but I
also never shared that I had Crohn’s Disease. I think I never shared for
two reasons. One, I was a teenager and it was tough enough dealing with the
issues that come with that, let alone to share that I had a disease that
made me poop a lot and gave me a lot of pain. Second, I didn’t really
understand what I had to begin with or how serious it was, so how can I
explain something to some when I did not even really know what I was
talking about. Back when I was diagnosed, there was still little studies
done about Crohns and it was not something ever talked about in society.

4. When was your Ah Ha moment when you decided to start speaking up about
IBD.
My Ah Ha moment was this year actually. When I got sick (again, but this
time really bad) and realized that this disease can really impact the rest
of my life if I don’t take it seriously. One of the ways for me to do that
was to open up about having it, because as crazy as it sounds, half my
family STILL had no idea that I had Crohn’s Disease till this year, 14
years after being diagnosed (let alone half my friends). I never shared
because I never thought it deserved to be shared because it was not a big
deal. I had it under control, at least I thought I did. The last 6 months I
dropped 20 pounds, going from 125 to 105, which is very noticeable and hard
to give excuses for. I became pale, lost all my energy and just wanted to
move back to LA to be near my family because I could tell something bad was
coming. I was right, I got an obstruction and I was hospitalized and at
that moment I realized, I have Crohns. Not my version of Crohns, where it
was a normal to go to the bathroom after every meal and have these mini
attacks, but CROHNS, the one that, if I don’t take seriously can really F
up the rest of my life! I hope I am explaining that right, hard to express
that eye opening moment but maybe some of you can relate to it.

5. Who are your inspirations in the IBD community and what makes them
special?
My inspirations are all my twitter friends and Facebook friends I have met
who have Crohns. That community is a combination of moms, dads, sisters,
brother, students, bloggers, teenagers and so on, who help support one
another and show compassion to those who are struggling with their Crohns.
This community has touched my heart and the work I do and hope to
accomplish, I do for them!

6. If you could meet anyone in the IBD who would it be?
I would love to be able to have a huge party with all my twitter and
Facebook friends who have Crohns, and meet them all! Sounds silly, but I
feel it would be a great party. I can not just pick one to meet!

7. What advice would you give someone who is recently diagnosed with
Crohn’s?
I would say that I know it may seem daunting and scary BUT you are not
alone and to reach out to others who have it, it helps a lot. Also know,
you will be ok. Especially during those scary/painful flares, to remind
yourself, that it will pass. I would also say that it is ok to feel all the
emotions that come with it and share it, it is important to have a good
support network that you can talk to about it. If you can not find that
support at home, you will definitely find it on twitter, Facebook and so
many other great websites that have great forums just for that.

8. Has Crohn’s Disease ever stopped you from doing something?
Only once, it stopped me this last time from continuing to work but it
became a blessing in disguise because then I would have never found the
time to create www.myjourneywithcrohns.com and this has become my heart and
love!

9. What is your biggest pet peeve about myths people believe about Crohn’s?

The most annoying thing I encounter is the common thread of people
thinking, “oh crohn’s is the pooping disease, that is why you are so
skinny.” It is the ignorance of others not knowing that it is way more then
“pooping” and that being “skinny” is not a plus from it (as it is usually
said in a way that implies, “oh that is why you are so lucky to be so
skinny.”) That is another bit of a pet peeve (going on a tangent for a
minute), because this past year, before I got sick, I was “fit”, I went to
yoga and palates every other day and was eating right. For the most part my
Crohns was under control, and the second someone found out I had Crohns, I
would always here “Oh that is why you are skinny” (in a way that sounded
like they got their answer as to why I looked the way I did and the world
made sense) and all I wanted to say was, “No, I actually work very hard to
take care of myself, this is not from Crohns. I do this to help prevent me
from getting a Crohn’s Flare.” There are two types of “skinny” with Crohn’s
in my opinion, and people do not get this. The “sick” skinny and the “fit,
I actually take care of myself” skinny. Sorry this just annoys me because I
have heard other friends with Crohns get that taken away from them, the
credit that they take care of themselves and thus may be “fit” from it.
Bottom line, people need to stop commenting on every pound you lose and
gain, especially because you never know the true story behind that person.

10. Do you think there will be a cure in your lifetime?

I hope so

Day 26 #NHBPM – Why I decided to leave an online community


This was a tough decision I made.  I still go there sometimes but overall, I just ignore the site.  My decision to leave was tough and a sad one. 

I had been going to HealingWell.com for a couple of years.  It was one of the first online forum places I found and joined in regularly.  It is a place where they have boards for all sorts of conditions and of course I posted in the Crohn’s Forum.  I had gotten some great advice over the years and was able to help others as well.

I had always felt like I could be open and honest there.  In turn, I met some great people who really needed some help and support there.  The site was also regularly monitored so if anything got out of hand, it was corrected pretty fast.  Abusive people were closed out and topics that were banned were deleted fast if they were brought up.

So why did I leave if it was such a great place?  Well, to put it simply…it WAS a good place.  I no longer feel it is.  About  two years ago, a lot changed in the forums.  First people in there seemed to be more abusive.  Some of the posters seemed to pick on others.  They would push their “cure all” advice and never accept other opinions.  The Mods (moderators) tried to curtail these posters, but the owner of the site seemed to not care what was going on and didn’t stand behind the Mods to well.  Eventually these bad posters would start verbally attack other members.  I was so horrified by this.  We all have the same disease and we are attacking each other instead of helping.  WTF!

The final straw came when some of the Mods, who I had gotten to know and were truly great helpful people, were let go and replaced.  They weren’t even really told why.  When this came to light in the room…all hell broke loose.  The room was divided into two factions..those for the now former Mods and the abusive people.

The board used to be a loving caring place to talk open and honestly.  It fast turned into an abusive not caring advertising board.  This was not going to work for me.   I was sad to leave it because I had gotten to know a bunch of the people on there and was going to miss them.

Luckily, the best people from the board started a closed group on Facebook and I was lucky enough to be invited …. yeah!  So now I can still talk to them, help them out, be helped out and just enjoy their company without the abuse.  The more I stayed away from the site, the better I feel and the feelings I had towards the site has left me also.

Do I ever regret leaving that community….never.  I felt like I had to make a stand to make a point and I feel I chose well.  Now I won’t lie…..I have been back a couple of times to check it out, but I hardly go back anymore.  It just isn’t the same place as when I joined up.  I have since found other great place to go and other wonderful people to talk to (you all know who you are).

Day 25 #NHBPM – How have your goals as a patient / advocate / person evolved?


Well, we are in the home stretch on the blogs and this is one that will really make me think.  In the beginning of the month I didn’t give much thought to my post, now, I am spending probably too much time on them 🙂  This one will be no different.
When I first started down the IBD road, I didn’t give it much thought.  I went through my years of being sick and I never had a goal in mind.  I just wanted to feel better and live my life.  I didn’t even know too much about the disease.  Growing up in the 1980’s the only resource around was the local library and since there wasn’t much written about Crohn’s there wasn’t much to read.

Over time, decades would pass.  During the 1990’s,  I started feeling a lot better to the point that I went off all medicines.  Since I didn’t know much about the disease, I didn’t know that this was a bad idea, and I didn’t see any point in learning more about my disease.  I went through life ignorant of what I had.

With the coming of a new century, my life changed.  In the 2000’s I started seeing a new GI who wanted me back on meds.  This started my downward spiral with medicine.  For some reason, I still never really felt the need to learn more about my disease or treatments.  Time would go on and living 20 years would come with me still ignorant about my disease.  I would go to some symposiums by CCFA and would read things here in there but by now I chose to just play dumb.  Why not?  I have been getting by without having to do much research.

By 2011, my life with the disease would change, and so would my goals.  My father in law who suffered with UC in his life and had a ostomy bag passed away.  This hit me because I looked up to him in my battle with IBD.  He was an inspiration in how he lived his life.  Second, I went into my biggest flare ever.  I started going through depression and felt like my life was going downhill real fast.

I started to feel useless in my battle.  After 23 years, I felt it was time.  It was time to finally find out just what I am living with.  I went online and realized just how much information was out there.  My life was about to change.  I was no longer going to be a patient, but an advocate.  I won’t go into the big details as I have talked about them a number of times already in other posts.   You know who I found online to be inspired by, who I learned from and just who could really help me.

After all is said and done, this blog now serves as my sounding board to help others.  I have gotten some really good feedback to show that what I stated out to do is working.  My main goal now is not educating myself but educating others.  I want to let other IBDers know just what options they have with their treatments, how to find a good GI and mainly just let them know that they aren’t alone with their disease.

My Facebook friends list has more IBDers than real friends.  Same for my Twitter account.  I talk to more people with UC and CD then I have ever.  Sometimes I learn some new information from them.  Sometimes I help them.  As 2012 draws to a close I look at where I have come from and how far I have traveled this year.  I went from feeling depressed, lonely and useless to being strong, confident and helping others.  I couldn’t have done it without the support of my fellow IBDers.

As for the future, I don’t know what it entails.  I want to become more active with CCFA.  I will probably work Camp Oasis this summer.  Anything else…I don’t know.  I guess we will have to wait and see.

Day19 #NHBPM – Life & Death


 

I think everyone thinks about their life and how they live.  When you’re a kid you are carefree.  You run around playing all the time thinking you are immortal and nothing can hurt you.  As you get older, you learn to appreciate life and when  you have  a family you get insurance.

Growing up with IBD really makes you appreciate life even more.  When all your friends are in school or outside playing, a lot of times we are in bed with pain.  When kids get together to have  a pizza party we are sipping tasteless broth.  We look at ourselves in a mirror and ask why.  Why can’t I have a normal life..and we start to really appreciate what we do have.  After awhile we learn that even though we are sick, we are alive.   After you have lived some years with the disease, you see that you can live and start to want to do things.  We have all been there.  We look at what we haven’t done and think, what can I do to enjoy life.  Maybe it is taking up jogging since you can stay local and near bathrooms.  For others, maybe it is skydiving for charity.  But we learn that just because we have a disease, it doesn’t have to end our lives.

Over time we learn to live with our pains and drug side effects.  We know there will be hospital visits and stays in our life.  We know there are days we won’t get out of bed…or the bathroom.  But we also know we have a life to live and we try to live it to it fullest capacity.

When I was 15, I got sick and was in bed for a week.  After I got diagnosed, I went back to school and tried to live a normal life.  Within half a year, I got pneumonia and that put me in a horrible flare.  I stopped going to school.  I never saw my friends.  My life was staying in bed watching TV (this is before cable).  It was watching certain shows that made me realize I was wasting my life.    I found a new hobby while I was sick.   I started to love cooking and I was watching a number of cooking and food shows.  I then started to realize that if I stayed in bed I would never amount to anything.

So, my parents got me some teachers that would come to my home to teach me.  I caught up on my schoolwork and eventually graduated.  I wanted to live life again so I decided to chance it and go away to college.  I wanted the full experience and yes, I did get it.  I decided that I wasn’t going to let my Crohn’s run my life.  I got my education and degrees.  I met some great people and eventually also me my wife.

Over the years I would have some Crohn’s related issues, but I would always think back to my bed ridden days and vow to continue living life.  I would not ever let my disease get to me.

And then my life changed.  My father in law lived with Ulcerative Colitis for years.  He had it so bad that he had to have his intestines removed and lived with an ostomy for a number of years.  I saw life in him.  He had numerous problems because of the bag but he always chose to fight on and live.  And then his and my world crashed.  He was in and out of the hospital with an unknown problem.  Eventually it affected his heart too much and he passed away from a heart attack.  His ostomy caused him to have electrolyte problems which eventually caused a lot of problems for him.

I say my world crashed because he was an inspiration to me.  He always tried to stay positive with his situation and I could only wish to be half a man if I was ever in his situation.  During his funeral, his friends would talk about how he was always full of life and had such a drive.

Part of me never grieved for him.  I never had the chance.  My wife and mother in law were devastated and I had to stay strong for them.  I was hurting on the inside but could never show it.  As the days went on, it was harder to show my feeling.  Here it is a year and half later and I still have the pain.  It still is deep in me and I don’t know how to release it.   Not only do I hurt because I lost a great father in law, but I hurt to know that one day I can be in that same situation.

Medicine has not helped me over the past 24 years.  I am on the last medicine available and even this is experimental for Crohn’s. I know I have a mild case but if I fail on meds and have to eventually go off all meds, my Crohn’s will get worse.  Where will that lead me.  Will I need surgery?  Will I have to have my colon removed?  Will I be like my father in law and end up with tons of problems?

No one likes facing their mortality.  As I kid I did a lot of dumb things.  Now, with my 40th birthday creeping up to me, I look to what I have left in my life.  I know that I won’t live forever.  My question is how will I live it though.  Will I spend each day thinking will this be the day my medicine stops working?  Or will I live it like it is my last and have a blast.  Right now I take it one day at a time.  I try to enjoy the time I have here.  I do what I can and try to help who I can in the moment.  If I am here tomorrow, then I will continue on.  But unlike when I was 6, I know I have an expiration date.  Hopefully, it won’t be for another 50 years as I still have a lot to do with my life.

Post 18 #NHBPM – Write about your advice for someone caring for a patient with your condition


 

Dear Sir/Madam:

This letter is to inform you that you are now caring for a patient with Crohn’s Disease.  There are a bunch of things you should know about the disease and how it will affect your life.

First, remember that the person you are taking care of has the disease, not you.  Right now they are probably scared because they have a uncurable chronic illness.  What they need most is love, affection and some sympathy.  They are in constant pain and will probably never feel “normal” again.  It is your job to help them get back to normal as best as THEY can.

Second, listen to them.  Don’t ever assume you know what they are going through or what they feel.  If they say they have pain, believe them.  Sometimes they may seem alright, but most times there is a 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.  Ah, I see the lightbulb go on above your head…you have an idea now on what they are feeling like.

Next, don’t try to force feed them.  An appetite is a tricky thing for someone with Crohn’s.  One day they can be nauseous and not want to eat.  Other days, they will want to pig out.  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 Crohn’s.

Your patient is not going to like the medicines that they are on.  If they are taking Prednisone, they are going to get depressed.  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 or 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 constant flare, they may 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 disease that will be with them all their 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 Crohn’s 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 off.

Thank you for taking the time to read this letter.  I hope it will help you in caring for your new patient.  If you have any questions, feel free to ask me.  There is also a huge community of 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.

sincerely;

Dr. Ira B. Darling