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

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.

 

 

Deconstructed Eggplant Parmesan – Gluten Free


As promised, here is the recipe for a delicious eggplant dish.  First, I want to say that I did not create this recipe.  I have changed it a little and the original can be found here http://glutenfreehappytummy.com/2012/08/15/eggplant-non-parmesan-gf-v-scd/.  I have found a bunch of good gluten free recipes on her website (sorry, I don’t know the name of the woman who writes this blog).  You can follow her recipe and it is really good.  I just wanted to tweak it a little to match my taste palate.  Also, one note…I wanted to post pictures of the cooking process but I got so wrapped up in making the dish I forgot to take pictures.  I do have one of the finished dish that I will post at the end.  So, here it is:

Serves 3

1 eggplant peeled, sliced in 1/2 inch rounds
1/2 Cup Almond Milk – Unsweetened

2/3 cup Garbanzo and Fava Bean Flour (mixed with a bit of salt, pepper, garlic powder, and onion powder)

Sauce:

3 tomatoes, chopped, with their juice
1 carrot and 1 celery stalk, diced
1/2 onion, diced
1 Tsp garlic paste 
1/2 tsp dried basil, oregano, and parsley
salt and pepper
fresh basil (garnish)

Preheat your oven to 400 degrees. After you slice your eggplant, set up your “breading station.” You will need one bowl with your milk, a plate with your  flour mixture, and a tin-foil-lined, olive-oil sprayed baking sheet. Dunk your eggplant in the milk, coat it with the flour and place on the baking sheet. Spray all the tops with olive oil, and then bake for 40 minutes until golden brown, flipping half way through.

Meanwhile, on the stove, saute your onion in 1 tsp EVOO, with salt, pepper, dried oregano and basil. Add your carrot and celery, and let it soften, about 6 minutes. Finally, add in your tomatoes and garlic. Let them cook for about 3 minutes. Mash with a potato masher, or put in the food processor to create your desired consistency.

After you have pureed your tomatoes, place back onto the stove and put a small flame under it.  Bring to a small boil to reduce out some of the liquid.  Taste it and reseason it if you need to.

When the eggplant is done, place 3 slices on a plate, layering them over each other.  Spoon some of the tomato sauce on top of the eggplant.  Place the basil in the center for garnish and serve.

Now to make this truly a parmesan you need some cheese.  I didn’t do it this time, but you can add either shaved parmesan or romano cheese to this.  You can also add some of the pearl mozzarella balls to this.  Either would make a nice garnish and addition to the meal.

Enjoy.

Gluten Free Diet Update


It has been seven months now since I have gone gluten-free in hopes of calming my colon to help get me in remission.  I figured I would update you to show just how important diet is to treating your IBD.

Back in January I weighed around 240 lbs.  I was going to the bathroom 30 times a day with a lot of cramping and having a lot of intestinal pain.  I knew I had to change my way of life.  So I decided to go on Weight Watchers and go gluten-free.  This would be a big change for me as I love my gluten 🙂

Here it is 7 months later.  I am happy to say, it is working beautifully.  I am down 25 lbs.  Best of all, my Crohn’s is just about in remission.  I am only going to the bathroom 3-4 times a day.  Still more than normal, but I can live with that.  My blood sugar and cholesterol have also come down but still not to acceptable levels.  Overall, I have made a real impact on my health for the better.

So what have I learned from this experience.  Well, you can definitely live a gluten-free life.  There are some hurdles every now and then but nothing that I can’t handle.  The biggest challenge so far was travelling to another country to an all-inclusive resort.  The food choices were a challenge, and I didn’t eat too much..but I was able to stick to my gluten-free diet.

Now for anyone thinking about going gluten-free but is worried about taste…don’t be.  There are a lot of tasty GF products out there.  Depending on where you live,  your selection might be different from mine but I am sure that you will find some tasty treats.  Here are some of the brands I use.

Bread – I have tried a number of GF breads and have found Udi’s Whole Grain to be my favorite.  Glutino also a good whole grain but their white bread isn’t as good.  Schar’s Deli Style bread reminds me of a Jewish Rye which makes a real good sandwich.

Cereal – I have been sticking with Chex for now as they have a number of different flavors to choose from.  Nature’s Path also makes some really good cereal’s but is a little harder to find.

Pasta – I have been sticking to Schar brand pasta but they are limited in their variety.  Tinkyada makes a good brown rice pasta also.  I recently made a lasagna with their noodles and you couldn’t tell it was gluten-free.

Snacks – This one is going to vary depending on what you are looking for in sweets.  I have been sticking to Schar’s Vanilla or Chocolate Wafers.  Glutino also makes good wafers but you get more per serving size with Schar.  For crunchy snacks, I find myself ignoring potato chips which are usually greasy and have been eating Pirate Booty.  They have a number of different flavors and styles.  I also have been eating more popcorn.  Not only is popcorn GF but it is a whole grain and has recently be found to have more antioxidants than some fruits and vegetables.  For my desert’s, I have been eating ZenSoy chocolate puddings.  They are dairy free and more delicious than Jell-O brand.

Frozen meals – Now of course home-made is healthier than frozen but sometimes you just have to do it.  I have found Amy’s brand has some really good meals.  I especially like their Spinach Lasagna.   Another pasta I like which is frozen is Caesar’s brand gnocchi.  I used to love gnocchi and this is one item I can still eat.  For pizza, I have been eating Glutino’s Pepperoni pizza.  Amy’s makes a good vegetable one that has no cheese.  My selection to frozen meals is limited as I can only find GF ones in Whole Foods.

As for meals, most natural foods are gluten-free.  Chicken, beef, vegetables, etc.  All you have to do is find some good recipes and use your imagination.   A simple meal like grilling a beef tenderloin, baked potato and some steamed broccoli is delicious, wholesome, and gluten-free.

So, my journey continues.  I am down 25 lbs with another 50 to go.  I have a long road ahead and my current medicine is making the journey a little harder but it is still a great learning experience.  I think as I come across them, I will post some recipes for anyone looking for some.  I recently found a great eggplant recipe that is GF and Dairy free.  I will post that real soon.  And if anyone has some they would like to share, let me know.

Step out of the Norm


Today I am stepping out of my norm…and I won’t really be talking about IBD.  Today, the thing on my mind is my weight loss and a revelation that I had.

I have mentioned it in some other posts and I don’t hide the fact that I am one of those overweight people with IBD.  When you hear statistics about obesity in America…I am in those statistics.  I never saw myself as obese..but my weight told a different tale.  I am 5 Foot 8 inches and before my weight loss journey I weighed around 240 lbs.  Now I knew I was overweight and had some issues because of it.  My blood sugar was high and my cholesterol was high.  My Crohn’s Disease was out of control and I was in a flare I just couldn’t control.  I knew I had to do something.

One day everything seemed to snap into place.  I was starting to get a new outlook on life with my Crohn’s so I decided to take it another step and control my weight.  I knew this wasn’t going to be easy.  I have been overweight all my life except when I first got sick with IBD.  I knew I had to get my weight down to the 160’s so I had a long road ahead of me.  The trick to this was finding what would work for me.  I have tried eating healthy before (high fiber, whole grains) but that would just anger my CD.  The things my tummy liked were white bleached products like white rice and white bread…the unhealthy stuff.  So this time around I did some research.

At the end of January of 2012, I went Gluten Free.  This was one of the best things I have done in my life for both my health and my Crohn’s.  Besides this, I also joined Weight Watchers..for the 3rd time in my life.  I swore to myself this would be the last time.

Here it is August 2012  and I have done pretty good.  So far I have lost 25 lbs and that is now where the trouble is starting.  The gluten-free diet has been trying some days but I have managed to stay on it.  The Weight Watchers is another story.  One thing they teach you and say you should do every day is track your food.  This helps in keeping tack of your daily points for the day.  Overall I have enough points right now to keep my satisfied.  But lately, I find myself on the weekend skipping the tracking.  Needless to say for the past 2 weeks I have gained some weight back.

Now one of the things they asked us is in a meeting was what keeps you motivated.  WW has this idea of anchors.  You should find something that when you look at it or touch it..it keeps you grounded and remind you why you are doing this.  I felt I never needed an anchor.  My biggest reason for losing weight was not only my bloodwork..but it was to keep my Crohn’s in check.  That is my biggest reason and my main reason to never be overweight again.  However, these past two weeks I have pushed that out of my head and ignored my body.

Last night as I travelled home, I reflected on the past couple of weeks.  I was trying to figure out why I am self sabotaging myself.  I have been doing so well with my journey.   And then it hit me.  All my life I have been overweight.  When I look in the mirror I see a slimmed down version (although still overweight) of myself and I am starting not to recognize him.  All I know is being overweight.  Since I refuse to be that anymore…what is my life going to be like?  How will I survive?  Will I be able to maintain that life?

Some of my thoughts were a little irrational but I know they are in my head so I have acknowledged them.  Whether the thoughts are rational or not, they are there and affecting me.  So I looked into my fear in the eyes.  I stared him down.  I have been sick for too long and I swore I would get better.  So here is this monster with chains in his hands telling me to come with him.  Well…not today.  You can take those chains and find someone else, because you won’t get me anymore.

I want to be healthy.  I want to be in remission.  I want to look in a mirror and say “Damn…who is that sexy guy?”  For years I have wanted to feel like a skinny person.  Well, I am going to get that chance..one day.  I know my fears will come back and haunt me probably for the rest of my life.  But I am done being overweight.  I want to live.  I want to enjoy life.  I want to be around for a long time. 

So, my journey continues.  I have hit a fork in the road and a chose a path.  So far, it is a clear path.  I remember where I am heading and I am back on the yellow bricks again.  My companions are by my side to guide me along.

My courage helped me face those dark fears.  My brains helped me see those fears for what they were.  My heart helped in clearing a path so I can step around the fears.  And my little dog was there to lick my face and show me that everything is alright and I can continue on my way home.  So I take those first steps again on the long road home.  I will get there.  It won’t be a short trip and there will be other obstacle.  And if any of those obstacles are flying monkies..I am running.

Recipe for Success


Two weeks ago at my Weight Watchers meeting we were talking about recipes.  We were encouraged to bring in a recipe to swap with everyone.  When it was my leaders turn, she gave us a recipe…but not for food.  I looked it over and thought, this isn’t just relevent to food…this is good for life.  So, I decided to share the wisdom of my leader and give you…The Recipe for Success

Ingredients:

1 Cup of Vision         1 Cup Commitment         1 Cup Discipline       1 Cup Self-Control    1 Cup Sacrifice   1 Cup Conviction              1 Cup Imagination

Directions:

In a large part of your life, add 1 cup of vision.  Make up your mind which direction to go and strive for it everyday.  Add 1 cup commitment.  Commit yourself every day to reaching your goal.    Add 1 cup discipline.  Discipline yourself to do what you must to keep the committment and hold on to the vision.  Add 1 cup of self-control.  No matter what temptation comes, remember you have a choice.  Add 1 cup of sacrifice.  Be willing to give up bad habits for good habits.  Add 1 cup conviction.

Have the courage to stand your ground knowing that you are mixing the right ingredients together in your life.  Add 1 cup of imagination.  Imagine what all this cooking will achieve in the end.  Bring all of these things to a boil.  Now pour it all into the rest of your life and you have the recipe for success.  Keep it always on simmer.

As I read this in the meeting, I was no longer thinking about food.  I know she gave this to us to help us stay on course and keep up with our weight loss.  But I saw a bigger picture.  Living with a chronic illness will do that to you.  I didn’t just see food…I saw a recipe to beat an illness.  I saw a recipe for me to get through life.

I know at times life with Crohn’s or Colitis can be hard.  Sometimes we want to just throw in the towel and say I quit.  But that is when we need this recipe.  Sometimes, we need to alter a recipe and add a little more spice to it.  There are days we might need 2 cups of self-control.  Maybe we need a gallon of vision because all we see is our blanket covering our eyes.  Whatever the day…keep this recipe close at hand.  Make it your first meal.  Make it your last.  Make a big batch of it on the weekend for the whole week.  Whatever you do…make sure to make it at least once a week.

Traveling with IBD


I just came back from vacation and for the first time in my life,  I was really scared about traveling with Crohn’s Disease.  In the past I never worried about it.  On the days where I would actually be traveling, I would take Imodium and that would be that.  I never worried about food choices either because in the past food wasn’t an issue with my Crohn’s.

This year was different.  For the first time in my life, I was staying in a Caribbean country.  I went to the Dominican Republic for 7 days.  Now the trip there didn’t worry me.  I have flown many times and was just excited not nervous so my stomach behaved.   My biggest worries would be the food this time around as my breakfast choice was going to be hard.   As a reminder to everyone, I have gone Gluten Free and eggs upset my CD.  Originally I bought some Chex cereal and almond milk to bring with me, but there was no room in the suitcase for them so I had to leave them behind.

When I got to the resort it was so beautiful and relaxing I thought, this would be great.  By dinner time, my worries kicked in.  Now at the resort I stayed in, there was a buffet for breakfast and lunch and for dinner you could do the buffet or you had a choice of 2 restaurants.  There were a total of 4 restaurants but only 2 were open each day.  As I looked at the menu’s of the restaurant I saw it was going to be very difficult to eat a GF diet.   Just about everything had gluten in it.  From every menu, there was maybe one item that was just naturally GF but of course I would have to worry about cross contamination.  I could deal with that though.  So for the first night, I survived, but the food didn’t taste good.

Come morning, it was buffet time.  I knew this would be a challenge so I brought my digestive enzymes just in case I had to eat eggs.  Turns out food would be the least of my worries.  The dinning area was opened all around so birds were flying in constantly.  They would walk all over the tables and fly to the food.  They would even peck and eat at the food on the buffet.  The workers there didn’t seem to care and this started to turn my stomach.   I quickly learned that food sanitation and safety meant nothing here.  The food workers wore no gloves, used utensils to touch raw and cooked meat together, and the food never seemed hot enough and sometimes not cooked enough.

So needless to say, keeping myself healthy was going to be a real challenge.  Just looking at the dinning building would turn my stomach.  I lost my appetite pretty quickly that first morning and for a week I hardly ate anything.  The restaurants didn’t have bird issues but they still had the other issues.  I couldn’t wait to leave and get home to eat a real meal.

Over all,  my CD never acted up (surprisingly) and I survived DR.  It was a very relaxing trip aside from the food and I didn’t want to leave.  But this trip opened my eyes to what many other people with IBD must go through.  Someone with active CD or UC might have gotten really sick from those conditions.    It also made me realize that for any future vacations, I am really going to have to plan and research places well.  I will never go clueless on vacation again.

So here are some advice to others with IBD for traveling:

1)  Make sure you have anti-D meds with you and enough of your regular meds.

2) If you are going to a resort, see if they can send you menus of their restaurants.  Also ask them if they can accommodate any special diet you might have.

3) Bring some IBD friendly foods with you.

4) If your staying at a hotel, look online for some IBD diet friendly restaurants.  Most restaurants these days post their menus online.

5) Check to see if they have a doctor where you are staying.  If you’re in a tropical country, the nearest hospital can be hours away.

6) Make sure you have up to date medical records with you and if your on meds, keep a list of them in your wallet just in case of an emergency.

7) Never be afraid to ask.  If you don’t see something, ask if they carry it.  If your GF and you don’t see any GF foods, they might have some and just don’t put it out.

8) Tip the staff well.  They will remember you and help you out more than someone who isn’t as appreciative.

Well, that is all I can think of for now.    I hope these tips can help you out the next time you travel.  I know I will be planning my next trip out very meticulously and won’t make the mistakes I made this year.