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

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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 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 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.

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

Day 16 #NHBPM – How You Take Time for Yourself


Time for myself.  What is that?

I am sure a lot of people ask that question these days.  We live in a busy fast pace world.  No one seems to stop and smell the roses.  We work 8-10 hours a day, spend about 2-3 hours commuting and 6-8 hours sleeping.  That is about 16-21 hours out of our lives, leaving anywhere from 3-8 hours to eat, shower, do chores, etc.  So time for myself…again, what is that?

Sad thing is that for us IBDers, stress is a big factor.  It is know that the more stress you have, the more likely you will have a flare or it makes it harder to come out of one.  We need to listen to our bodies when it tells us STOP!  Let Me REST!!

For me, I make sure to factor in some time to just chill and relax.  I try to spend some hours at night just vegging out.  This may be watching television or playing on the computer.  But it is time for my body to relax and unwind.  About every 4-5 weeks, I get messages.  This helps in releasing the body of stress and it is a time for me to relax and not think about anything.

There are so many ways for a person to make some time for themselves.  One way is to take a class.  It can be anything from educational to fitness to recreational.   The reason I say a class is that they are usually scheduled ahead of time.  This forces you to put it on a calendar and make the time for it.

Another way to make time (and this is more for the ladies) is instead of taking a shower, draw yourself a bath and take a 1/2 hour or an hour to soak it up and relax.  If you have kids, tell your spouse to watch over them for that time.  Have some wine, play some relaxing music or read a book in there.

Lastly, on the days off from work, instead of doing chores, take your loved one out and have some fun.  Go to a movie or museum.  Go for a hike if you like.  Whatever it is, just do it.  Don’t hesitate.  If you don’t make the attempt, you will never do it and you will just keep yourself stressed.

Now I know some of you are going to say that they just don’t have the time to do these things.  I say, you do, you just don’t know it.  If you have a kid, get a babysitter.  If you work real long hours, then see about taking a personal day one day.  If you just make excuses of why you can’t do it, then you need to look at yourself and ask why you’re not making the time.

Crohn’s and Colitis is a tricky disease.  We can go for years with no problems and then suddenly, BAM, we are sick for months on end.  If we don’t take the time now for ourselves, we might regret it.   No matter the situation you are in, there is always a couple of hours in the day to take as a “Me” time.

So go do it now.  Step away from the computer and go enjoy yourself with a loved one and do something fun.  Go bowling.  Go see a movie.  Go to a museum.  Doesn’t matter what you do….just go and do it.