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

Advertisements

Day 17 #NHBPM – My Strengths and Weaknesses List


Today we had a choice for our post to list our strengths and weaknesses or make a playlist.  Well, if you read my blog, you will see that I have done the playlist before, so I figured I will do something new..and list my strengths and weaknesses.

Strengths:

My first strength is compassion.  It used to be a weakness but lately, I have had so much of it.  It wasn’t until I had my worst flare that I started to understand my disease.  I never truly understood it before so my compassion towards others wasn’t as strong.  Now that I have had a healthy dose of reality, I feel for everyone.  It has been my driving force behind this blog.

Determination.  When I put my mind to something, I go for it.  This blog is proof of it.  I wanted to really start to help people.  I first started with video but didn’t like it.  Instead of just stopping I decided to try writing.  I tried 2 other sites previously but didn’t like how the blog was coming out.  I could have given up again.  Instead, I kept looking for a good website to use and here I am.

Willing to Learn.  I am like a sponge.  I try to absorb as much information as I can about a subject.  In this past year alone I have learned more about my disease and treatments then I knew about it all my life.

 

Weaknesses:

Stubborn.  My wife will agree with this one.  I am a very stubborn person and sometimes this will stop me from learning things.  If I think I am right or know something, sometime it takes a while to convince me otherwise.  I am trying real hard lately not to be as stubborn.  I think it is working as it has caused me to be more empathetic towards others.

Ignorance.  I say this because for many years I kind of chose to be ignorant about my disease.  I didn’t choose to learn more over time and never chose to learn about new treatments.  Of course, this is changing also and I have decided to open my eyes more.

Lack of concentration.  This I blame on the CD because…….wait…what I was I just thinking… 🙂  Just kidding.  I say this one because sometimes I have a really good idea and try to come through on making it happen.  But then I lose sight of it and just stop focusing on it.

 

Well, I am sure there are more of both strengths and weaknesses.  I am curious if anyone notices something in me they would say is a strength of weakness.  Let me know.  I want to improve myself and would love any feedback.

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.

Day 13 #NHBPM – Write about something taboo


National Health Blog Post Month!

 

Poop, bum brownie, dookie, turd, water log, and the all time favorite, doodie.  Have you guessed what I am going to talk about today?

When it comes to IBD, there is no shortage of taboo subjects.  Pretty much everything surrounding the diseases are not pleasant to talk about, especially the acts surrounding the disease.  No one talks about going to the bathroom, especially if you’re a woman.  It is seen as an unattractive thing and most women will never touch the subject.

But what do you do when you life all of a sudden revolves around the bathroom.  I think about the Humira commercial where you see this person walking in a circle always being near a bathroom.  That is what Crohn’s and Colitis does to a person.  Whether we like it or not, our bowls take over our lives.

No one really ever wants to talk about their poop.  I agree it is disgusting and not something pleasant to talk about.  But after you have had some bowel accidents you learn to live with it.  It’s amazing that we are so obsessed with the food that goes into our mouths but once we swallow it, we forget all about it.  The food gets digested and turns into that taboo subject.

So why are we so skittish to talk about dropping the kids off at the pool (one of my favorite sayings).  I think it is because it is deemed a filthy and unclean act and we as humans want to be clean.  We live in a society where we take daily showers and use hand sanitizers.  When we eat things like lobster, we wear plastic bibs to keep us clean and use wet naps afterwards to clean our hands.  Now I used this example because lobsters are considered unclean.   They live at the bottom of the ocean and eat the poo of other animals.  Have you ever wore a bib when you ate a salad or wiped your hands using a wet nap after eating a hamburger?

The thing with poo is that our IBD lives revolve around it whether we like it or not.  For a lot of us, it is in the form a diarrhea.  With diarrhea come urgency.  People with IBD have little control over their sphincter muscle.  When we have to go, we have at most one minute to get to a toilet. Many people don’t understand that.   I have read so many stories that start off, “We were riding in the car and I said I have to go.  My spouse said, I will pull over at the next exit”  What that person doesn’t understand is that the next exit could be miles away.  We don’t have that time.  Now truly means now with us.

Lately I have been hearing more stories about people having accidents or going on the side of the road.  More and more people with IBD are starting to open up on the subject.  I love it because we are all in the same boat.  I think we have all been there at one point.  Talking about it gives us comfort to know we are still normal.  It also helps take away the stress associated with it.

Another thing about poo, is that it can tell a lot about our health.  Doctors can use it to find out if we have certain ailments or diseases.  They can see what our body is digesting and what they aren’t.   Now I am reminded of the song from Scrubs…and I will end it with the video and lyrics.

Everything Comes Down To Poo Lyrics – Scrubs

J.D.: Hey, Ms. Miller — we just need a stool sample
Patti: Why do you need a stool sample if you think I’m just a nut?
Turk & JD: ‘Cause the answer’s not in your head, my dear — it’s in your
butt!
J.D.: You see….
Everything comes down to poo!
From the top of your head, to the sole of your shoe
We can figure out what’s wrong with you by lookin’ at your poo!
Turk?
Turk: Do you have a hemorrhoid or is it rectal cancer?
When you flush your dookie down, you flush away the answer!
J.D.: It doesn’t really matter if it’s hard or if it’s loose
We’ll figure out what’s ailing you, as long as it’s a deuce!
Yes!
Everything comes down to poo!
Nurses: Everything comes down to poo!
J.D.: Cardiovascular and lymphatic, yes, the nervous system, too!

All across the nation, we trust in defecation!
Everything comes down to poo!
Turk: If you want to know what’s wrong, don’t sit and act so cool
Just be a man and eat some bran, and drop the kids off at the pool!
Robed Woman: My stomach hurts
J.D: Check the poo
Limping Woman: I sprained my ankle
Turk: Check the poo!
Bloody Shoulder Guy: I was shot!
J.D: Check the poo!
Delivery Guy: A homeless guy threw poo in my eye!
Turk: Check the poo!
Delivery Guy: Mine or his?
J.D: First him, then you!
It may sound gross, you may say “shush!”
J.D. & Turk: But we need to see what comes out of your tush!
Because!
All: Everything comes down to poo!
Whether it’s a tumor or a touch of the flu!
J.D. & Turk: Please, won’t you pinch us off a big, fat clue!
Turk: Our number one test is your Number Two!
All: If there’s no breeze, light a match please!
Everything comes down to —
J.D.: Doo-doo!
Turk: Doo-doo!
J.D.: Doo-doo!
Turk: Doo-doo!
All: Everything comes down to … poo!

Day 12 #NHBPM – Advice for Newly Diagnosed Patients


National Health Blog Post Month!

Today I am using one of the bonus topics.  When I saw this topic I knew I had to write about it.  It is one of the reasons I started this blog.

To anyone reading this and are newly diagnosed with either Colitis or Crohn’s Disease, the first advice I can give is….Take A Deep Breath.  Your life is about to change forever.  You are entering a whole new world.  You will have a lot going against you and years of fights to have.  So take a deep breath.  Relax.  Stay calm because you have a very big and caring community behind you to help.

When I was first diagnosed in the 1980’s, I was given some pamphlets to read and sent home from the hospital.  I didn’t know what the disease was all about or what was installed for me over the years.  Now, there is the internet.  In a matter of minutes you can find out all the information you want, see tons of videos, and meet hundreds of people living with the disease.

So, now after you have taken that breath, take another and another.  Now sit down and create a journal.  Write down your symptoms, your medicine, your diet.  This will help you later on in life when you have problems.  Try to keep track of every medicine you take and how it helps or doesn’t help you.  Keep track of the side effects.

Now that you have done some work, let’s go have some fun.  Search the internet.  There are so many people out there to help you out.  There are a lot of video’s on YouTube to watch.  Some are funny, some informational.  Some are just video blogs.  After you have watched some of the video’s, come on over to Facebook.  There are tons of groups with people who have IBD.  You will soon find that you are not alone.  You will also find that most of these people will be very open to accept you in.

Now that you have had the time to see what the disease has to offer you, you have to take a mental step.  You have to toughen up.  This disease is a disgusting and descriptive disease.  Many people with it are very open and there is a lot of disgusting things.  If you are squeamish and don’t like dirty things…well, you will have to change how you are.  You yourself will go through some tough disgusting times and it will be easier if you are ready for it mentally.

After all of this your head is probably spinning.  There is so much information to take in.  You are probably wondering if you will ever have a normal life again.  I am happy to tell you that yes, you can.  I myself hold down a job, I have gotten married, and I live life to its fullest.  Some people do have severe complications and find it hard to live a normal life.  But nothing says that this is going to happen to you.  Stay strong and stay positive.

The next big thing you have to do is find yourself a really good gastroenterologist.   If you are under 18, you will need a pediatric gastro and in a couple of years find a regular GI.  It can take years until you find a good doctor.  Don’t despair.  They are out there.  I myself have had at least 6 GI’s before I found a really great one.

So now, do you feel better?  You may have a disease but know the disease does not have you.  If you ever have a question or problem, there is always someone out there to help you out.  And if you want, just ask me.  I will do whatever I can to help you because my motto for this disease is “You are never alone”.

Day 3 #NHBPM – A Conversation with my Doctor


Day 3 – I like this topic.  I have talked about this one also but I would love to reshare it because it can give people hope.

About 3 months ago, I decided I wanted off Humira.  I was getting really bad psoriasis on my legs and it was starting to spread to my stomach.  I had had enough.  I knew the conversation with my GI doc was going to be rough.  First, I have been on pretty much every type of medicine out there so there wasn’t really anything left for me to try.  Second…what doctor wants to hear that a patient is refusing their current treatment.

I did a lot of research beforehand on a new drug therapy and I decided that I wanted to try Low Dose Naltrexone or LDN.  It has been gaining popularity within the IBD community for having great results with little to no side effects.  That was what I needed because I seem to get all the side effects.  The main problem though is that it is not a standard treatment for Crohn’s right now and is still considered experimental.  I felt like I had tried all the conventional therapies so maybe it was time for something new.  I printed out some information and a case study done on the drug and brought it with me to my appt.

Needless to say, the morning of my GI appt, I was very nervous.  I didn’t know what my doc would say or think.  He started out talking to me about how I am and then did his exam.  Then we got down to brass tactics.  I told him I was at the point where I need to control the psoriasis first rather than the CD so I wanted off Humira.  Before he could talk me out of it, I went into suggesting LDN to him.  He then told me he was familiar with the drug (as a low dose form) and he doesn’t currently have any patients on it and he has never used it.  My heart sank.  But…(wait, did he say but..) he would do some research into it and let me know within a week.  I was shocked at this.  I have never had a doctor say he would research something just for me.  I think every doc should do this for every patient…I just never had it done before.  All my past doctors were know it all docs who didn’t want to hear anything.

I was so excited.  I was going off Humira, had a doctor that cared, and might get something that will really help me.  A week went by…and I heard nothing.  I knew my doc was going on vacation so I gave him another week.  After 2 weeks, I messaged him and he told me that he would do it.  YEAH!!!

When I went back to him about another 2 weeks later to get my script, we talked a little.  Now I never gave him the information I had because I didn’t want to be pushy and scare him.  When he said he would do the research, I knew he would find the same info.  I however brought it with me again just in case.  He did admit that this was all new to him and he wasn’t even sure just how much to prescribe.  Thankfully I did my research and was able to help him with that.  After I told him…he then says that the dosage matched what they used in the study.  I think he really knew and was testing me to see if I really looked into the med.  Gothcha doc 🙂  So we talked a little more about this and afterwards I got my script.

I walked out of his office head held high.  I was in new territory now and was proud of myself for sticking to my guns.  But what I learned from all of this is that you should never ever ever be afraid to talk to your doctor.  I think your treatments should be a 2 way street.  You should have as much say as your doctor.  I have been very lucky to have found such a great, caring and resourceful doctor.  He is open to suggestions and doesn’t think that he knows it all. 

And that is my message to everyone.  Talk to your doctor.  Sometime they will be stubborn and when they get like that, insist some more.  Don’t ever back down or give in.  Remember, your body is your body…not theirs.  You know your body best and how you react to things.  Make your voice heard.  And if your doctor won’t listen to you…find another one.  They truly are a dime a dozen.