Summer and IBD


Now that the sun is out and the warm, or rather hot, weather is here many people are heathappy.  They can go out and enjoy the sunshine and get a tan.  They can hang at the beach or pool.  They have BBQ’s and picnics.  But sadly not everyone can enjoy the summer days.  For many of us, Summer is dangerous.

Like so many things IBD, the heat of the summer days can be bad for us.  For many, it brings on flares.  For others, it is dehydration.  I personally hate the heat as it makes my symptoms worse and I find myself spending more time in the bathroom.

So what is it about the heat that makes our IBD worse.  I looked this up online and found one thing and thought it was interesting.  It was from a site I had never heard of and it talked about a study done in Switzerland.  The website was emaxhealth.com and here is what they posted:

One environmental factor never before discussed is climate change. Could hotter weather make IBD symptoms worse? Researchers with University Hospital in Zurich, Switzerland believe so.

Gastroenterologist Christine Manser and her team reviewed the hospital’s admission records over a five-year period, which included 17 heat waves – defined as any period of six or more days with high temperatures rising above the average daily high by more than 9 degrees Fahrenheit. A total of 738 patients with Inflammatory bowel disease and 786 patients with infectious gastroenteritis were admitted during these hot spells. A control group of 506 people hospitalized for noninfectious GI problems were used as comparison.

Periods of extreme hot weather led to a 4.6% increase in risk of people needing to be hospitalized with a relapse of inflammatory bowel disease for every additional day the heat wave lasted. There was also a 4.7% increased risk of people sickened by infectious gastroenteritis, an inflammation of the stomach and intestines caused by a bacteria or virus with symptoms that include vomiting and watery diarrhea in addition to fever, abdominal cramps, nausea and headache.

Dr. Manser says that several potential mechanisms may explain this phenomenon. The heat waves could induce physical stress, which has been shown to cause flares of IBD. For IG, heat can change the bacterial composition of the GI tract which leads then to symptoms.

The study came from this reference: Christine N. Manser MD et al. Heat Waves, Incidence of Infectious Gastroenteritis, and Relapse Rates of Inflammatory Bowel Disease: A Retrospective Controlled Observational Study. Am J Gastroenterol advance online publication 13 August 2013; doi: 10.1038/ajg.2013.186

When you think about it, it kind of makes sense.  Heat makes things speed up and if we have bad bacteria in us, it kind of makes sense that it can promote growth.  What I do question though is looking at the symptoms (abdominal cramps, nausea and headache) did they look into dehydration as a cause.  Since there were numerous heat waves during the study, these symptoms can also be from dehydration.

That leads me to the biggest rule for the summer for us IBDers.  Stay Hydrated!  If you have to bring water with you everywhere you go.  And yes, I said water not sports drink.  Many of the sports drinks are mostly sugar which can make dehydration worse.  If you stay Water Bottlehydrated with the water, you shouldn’t be losing electrolytes and hopefully don’t need the extra from these sports drinks.  And yes I know everyone is different, especially those with ostomies.  If you know you definitely need the electrolytes, then of course have a sports drink.  My main rule is, make sure you always have something with you to keep you hydrated.

My second rule is dress for the weather.  If it is hot out, don’t dress in long sleeves and jackets.  Wear loose clothing that can breath.  If you feel daring, go for the shorts and tank tops.  I know many IBDers are self conscious about their bodies because of the numerous scars a lot of us have.  I say be proud and show it off 🙂  Don’t let people make you feel bad.  If you are going swimming, don’t bundle up to hide.  Wear that bathing suit proudly.beach

Third rule is stay cool.  While it is nice to get out doors and enjoy the sun, don’t overdue it.  When you go inside, turn on an air conditioner.  Enjoy the cool air it has to offer.  It can actually help you too because if the heat is going to be bad for your IBD, the cool air is going to help calm the IBD.

Sun

So now that you know a little about how to deal with the summer, go out and have fun.  Don’t let the heat stop you from living your life.  I know I won’t.

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 4 – Write about what’s in your bag / purse / backpack every day


National Health Blog Post Month!

 

Ah yes – the Go bag, or our version of the Go bag.  Almost every person with IBD knows about this bag.  We all kind of differ on some items but for the most part we all share the same products.  So, what is in mine you ask.

 

Well, to start off, my bag is a normal book bag.  I use this because, 1 – it is easy to carry..just put in on your shoulders. 2 – it is big enough to hide any embarrassing items – you will see what I mean. 3 – it is big enough to carry everything and I can use it to carry other items like packages, umbrellas, kindle, etc.

Now, I don’t always carry this bag with me.  When I go to work, I size everything down and put the bare essentials in my work bag.  If I am going out and doing daily chores..and feeling great, I will not bring anything.  Then there are the bad flare days where I can’t get off the toilet.  Then the bag is glued to my back.

Here is my list of products:

  1. Travel Size Toilet Paper 
  2. Travel Size Toilet Seat Covers
  3. Hand Sanitizer
  4. Extra underwear
  5. Plastic bag with underwear
  6. Latex Gloves
  7. Immodium/Tylenol/Tums/Gas X (all in a pill dispenser)
  8. Waterless soap
  9. Travel Size Wet Wipes
  10. Flashlight

So there it is.  My IBD Go Bag.  What is in yours?  I would love to hear your comments and compare.  Do you have something essential in yours that I am missing?

Dark Side – What is Yours?


There’s a place that I know,it’s not pretty there and few have ever gone.  If i show it to you nowwill it make you run away, or will you stay even if it hurts.  Even if I try to push you out will you return?  And remind me who I really am. Please remind me who I really am 

Kelly Clarkson’s songs always seem very personal.  She reaches down into her soul to find lyrics and they come out as great songs.   From the first time I heard the song “Dark Side”  I was hooked on it.  I could hear the pain in her voice and can tell she had real emotions to this song. 
 
It wasn’t until I heard the song a couple of times that I started thinking about it.  I remember I was on the subway pulling into the Times Square stop when it hit me.  Kelly was talking about not having a boyfriend in the song, but that wasn’t my dark side.  My dark side, like so many other things in my life lately, had to do with my Crohn’s Disease.  I replayed the song on my Ipod and relistened to the words thinking about my dark side.
 
So much of my disease is kept inside me.  There is so much that I hide away from everyone.  No one in my life, not even my wife, truly knows every feeling I have when it comes to my disease.  Kelly’s words started to ring true to me.  If I tell all to my friends and family…will they just run away?  Or will they stay and remind me who I really am?
 
Of course that brings on more thoughts….who am I really?  Am I a person with a disease or am I a disease trying to live a life?  I think a lot of people with a chronic illness think and feel this.  Over time the disease starts to take over and forms our lives.  Eventually, we lose sight of who we are and tend to think of ourselves as our disease.  I personally like to think I am more than the disease.  I have a life, am married, and hold a job.  I have been lucky to not let my disease become my life.  For some though this isn’t true though.  I know when I was a teenager, I didn’t know what I was going to do with my life.  I thought, what can I do for a living when I constantly have to run to the bathroom?  No one knew of these thoughts though.  Back then my dark side started to form.  Over time, it grew bigger and bigger.
 
But….the song does continue…….
 
like a diamond from black dust, it’s hard to know what can become if you give up.  So don’t give up on me,  please remind me who I really am.

After a diagnosis, we don’t know what we will become…especially when we are diagnosed at a young age.  We think…can I live my life?  Will I have a life?  Will people like and love me?  Will I be able to work or go to school?  And usually, even when we get that diagnosis, we are still sick.  After saying those questions to ourselves we sometimes want to give up.  We are at our most vulnerable. 
 
I chose not to give up early on.  After battling my disease for a year I decided I was going to take hold of my life.  I wanted to go to college and get a job afterwards.  My family helped me make this decision and showed me who I really am.  I wanted to become a chef and they stood behind me.  They drove me to look at colleges.  They helped me with the applications.  They stood by me every step of the way.    For that I am very thankful. 
 
So, as I am sitting on my bus heading home…listening to the song a third time, I think about my dark side.  Since my diagnosis as a teenager, I have hidden a lot away.  So many feelings and emotions.  Thoughts and despair .  Some of them I have shown you on here.  Some I still hide away.  I don’t know if I will ever get all my feelings out, mainly I don’t know if I could ever really show that dark side of my life.  I do know, that what I have shown so far had done a lot for me and for some other people with IBD.  My thoughts have made myself and others stronger…but that is another song. 

Gluten Free Mac & Cheese


I wanted to share with you another recipe I have that is gluten-free.  I started making this recipe a couple of years ago when I was on Weight Watchers for the 2nd time.  This is one of their recipes but I have modified it a little.  Originally this wasn’t a gluten-free recipe but as my lifestyle changes, so do my recipes.  For any vegans, you can also modify this using a dairy free cheese and soy or almond milk.

Gluten Free Macaroni & Cheese – Serves 2

  1. 6 oz Uncooked Gluten Free Elbow Macaroni – you can use whatever brand you like
  2. 1 cup Fat Free Milk (can be lactose free, soy, almond, or regular)
  3. 1/8 cup Gluten Free All Purpose Flour
  4. 1/4 tsp Kosher Salt
  5. 1/4 tsp Onion Powder
  6. 1/2 cup Low Fat Shredded Sharp Cheddar Cheese

Cook pasta in water according to package.  Drain and return to pot.

While pasta is cooking, in a large saucepan, whisk together milk, flour, salt and onion powder until blended.  Bring to a boil on a medium – low heat, whisking frequently.  Reduce to a low heat and simmer, stirring often, until thickened (about 2 minutes).  Remove from heat and whisk in the cheese.

Add sauce to the cooked pasta, toss to coat, and serve.
I sometimes add cooked broccoli to this.  You can also add meat to this dish like cubed ham.  If you do, I would reduce the amount of pasta to 4 oz then.

 

Feel free to play with this recipe as  there are a lot of things you can do with it.  Some people add hot sauce or red pepper flakes.  Some will add bread crumbs and bake it.  Whatever you do, enjoy it like I always do.

 

 

The Spoon Theory written by Christine Miserandino


Almost everyone with a chronic illness has probably heard of the Spoon Theory.  Here it is if you have never read it before.  I belive the originator of it was Christine Miserandino so I am crediting her.  You can check out her website at www.butyoudontlooksick.com

Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.