Ronald McDonald House

                   Ronald McDonald House


Everyone has heard of the Ronald McDonald House's but how many of you have ever actually seen or visited one?  I know when I was growing up I would hear about them but I never saw or heard any real information about them except they were a place for families to stay who had children in the hospital.

What no one talks about is how wonderful they are.  Several years ago I went to my first EB Center clinic visit at Cincinnati Children's Hospital and Medical Center.  Even though I am an adult with no children, because I have EB and was being seen at CCHMC I qualified to stay at the Ronald McDonald House.  At that time I was going through a very difficult time physically, emotionally and financially and I had absolutely no money to pay for anything so I was nervous about staying there as I felt I would be looked down on or made to feel unwelcome since I could not afford to pay the miniscule fee they ask for.


I could not have been more wrong.  The staff at the house was so friendly, kind and welcoming.  They treated me with dignity and respect and it did not matter to them that I could not afford to pay.  One of the staff members took me into a comfortable office/conference room to go over the registration process.  When the subject of the $25 nightly fee was brought up I explained my situation and that I was not able to pay.  She simply gave me one financial aid form to fill out, which was the proof they need for their records explaining why I could not pay, and it was never mentioned again.  After the papers were signed she gave me a canvas bag filled with goodies.  I was so surprised!  It was filled with toiletry items, puzzle books, a handheld electronic massager (with batteries included!), notepads and pens, a small handmade blanket, a soft, fluffy bunny and much more.  I was overwhelmed with gratitude and near tears when she handed me the bag.  Everyone I met there treated me with compassion, dignity and respect and I was made to feel so welcome and loved.  Ronald McDonald House's are not just a place to sleep at night and store your belongings while you are at the hospital.  It truly is a home away from home. 


Ronald McDonald House by most Children's Hospital's.  The Ronald McDonald Houses (RMH) are amazing.  You never hear about them or how much they help people.  Their general nightly rate is $25 (it may be different in other states but it shouldn't be much more than that) and if you can't pay that much then you pay as much as you can, even if it's only $5 a night.  If you can't afford that, you fill out a financial aid form and if you qualify you pay nothing.  There are other ways to help raise funds for the RMH.  They have yearly 5K runs, there are the boxes at every McDonald's inside AND at every drive thru so if you aren't able to pay for your stay there are other ways you can help :)

They have a large kitchen/dining area that has, within it, 4-6 full kitchen areas (counter, dishwasher, stove, oven, microwave, sink, dishes, utensils etc...) that you can you use for cooking your own meals.  You get your own pantry, refrigerator and freezer space for your groceries, however, there are volunteers that cook dinner every day of the week (included in your stay) and often volunteers that cook lunch as well.  They have a pantry with dry and canned foods that you can use and cook for yourself or if you want to make a special treat for the other guests.  You are just asked to clean up after yourself.  They also supply dairy products (Milk, eggs, yogurt, butter, cheese) and basic staples like bread, peanut butter, jelly, condiments and applesauce and juices.  There are always leftovers from a previous meal and you are encouraged to eat leftovers so they don't have to be thrown out, but you don't have to.  I bought groceries but honestly, I never used any of them during my stay.  I didn't need to.  

They also have laundry facilities, multiple entertainment areas with TV, VCR/DVD and a movie selection you can borrow movies from.  Their is a PC and Internet station, library and craft room.  They offer free tickets to local attractions (Zoo's, Aquariums etc...) and also have outdoor play areas.  The only thing is that rooms are on a first come first serve basis.  You call the RMH 24 hours before your appointment and they put you on the waiting list.  Normally, by the time you arrive or later that day they may have a room for you.  There is a possibility you might have to stay a night in a hotel while you are waiting for a room to open up, but they will get you in as soon as possible.  I only had to stay one night in a hotel, but I know many others who didn't have to.  It just depends on how full they are.  There is no time limit for your stay.  As long as you or your child is either in the hospital or being treated out patient by the hospital then you can stay as long as you need to.

Fecal Hoarding and Constipation in EB

                 Fecal Hoarding and Constipation in EB  


“I have had these issues since birth and have tried a myriad of medications that have been prescribed or suggested by prior physicians.  The list includes mineral oil, senna products (liquid and herbal tea) ex-lax, milk of magnesia, dulcolax, docusate sodium, Metamucil, Miralax, benefiber and many others that I don’t remember the names of.  Ultimately, none of them worked in a manner that was consistent, or the side effects were to severe so outweighed the benefits, or they didn’t help at all.” 

“For anyone who may not understand why constipation and fecal hoarding is such a prevalent problem for EB patients it is because our skin does not have the same elasticity that others do.  Therefore, during a bowel movement, the skin of the rectum/anal area is stretched which causes blistering, tearing, splitting, shearing and detaching of many layers of skin.  This is EXCRUCIATINGLY painful.” 

“Generally, what happens is the fear and anxiety of having a bowel movement causes a behavioral habit called fecal hoarding which is when a patient deliberately avoids going to the bathroom when the body is trying to naturally expel the matter in an attempt to avoid the pain.  What happens then is the matter becomes impacted and the intestines become stretched as more and more matter becomes impacted, thereby causing the size of the feces to become too large to be expelled naturally, as the skin simply would not be able to accommodate its passing.  Because of the impaction, the matter becomes very hard and gas builds up in the body, causing painful cramping, as the gas cannot be released from the body, as it has no room to move past the matter.”

“At this point, the only thing that is going to alleviate the impaction is a series of laxatives, stool softeners and enemas.  This is a painful and humiliating process that can sometimes take a few days to complete.  The best way to keep this from happening is to make sure that you are ingesting enough fiber and water to allow the fecal matter to be soft so there is less pain when having a bowel movement.”

“What can also happen is some of the matter can become fluid and is able to slip past the harder matter so there are small bowel movements that are generally very messy but do help relieve some of the painful pressure of the matter that is bearing down on the inside of the intestines and rectum.  This can give a false sense of security as one may think that they are having a bowel movement regularly; however, the case may be that only a small amount is being released during these loose movements.”

“It is a trial and error process of trying different medications or fiber supplements.  Either they don’t help, or they help a little but not enough or you spend all your time running back and forth to the bathroom, an sometimes not quite making it there in time, which is humiliating for a person of any age.”

“When I was in my late 20’s I decided to try something different as I was frustrated by the lack of control I had over my bowel’s and it angered me that this skin disorder was making such a simple action so complicated.  I decided to try a more natural approach of simply increasing my fiber and liquid intake.  I began eating prunes and drinking more water every day, and it worked!  After a day or two, I began having regular bowel movements that were very soft, and while it was still painful, it was not as painful or traumatic as I had been enduring.”

“After a few weeks, I got tired of prunes so I started looking for other foods or products that would have the same effect.  The other benefit of eating foods high in fiber was that there were no side effects like when I was taking the medications.” 

“Please remember that I am simply relaying information that helped ME.  I strongly recommend discussing any diet change with your or your child’s doctor before making any serious changes.  Also, continue taking medications until discussing any changes with the prescribing physician.”

Below is a list of high fiber products

Please remember that FRESH fruits and veggies have much more fiber, vitamins and minerals than canned.

Prunes      Peaches         Cantaloupe    Watermelon    All green veggies

Plums        Nectarines    Grapes         Grapefruit     Honey Dew Melon

Apricots   Apples           Pears           Oranges         Mandarin Oranges    

Salad (darker lettuce and baby spinach has more fiber, vitamins and minerals than iceberg lettuce)

Pretty much ALL forms of BEANS are high in fiber (they are effective although they do create more gas)

Whole wheat bread (Brownberry whole wheat has 3 grams per slice and is the best tasting whole wheat I’ve found…It has a sweet taste and is yummy : )

Weight watcher brand muffins and dessert cakes (generally found in the bread aisle)

Slim fast brand muffin bars      Polaner all fruit with added fiber

Shredded wheat cereals (Fiber One brand has a shredded wheat cereal with a higher fiber content than regular brands)

Oatmeal (several brands have many flavors with more fiber or added fiber)

Fiber One pop tarts   Fiber One brownies    Boost Plus supplement shakes

For infants and those that are not crawling or walking, it is helpful to massage the abdomen, with extreme caution so as not to traumatize skin, as well as pushing the legs up towards the abdomen area (as if riding a bicycle).  This helps move the fecal matter through the intestines.  If the matter is firm or hard it can hurt as it moves through the intestines (cramping) as the tissue is sensitive.  It best to limit milk intake as it does not provide as much hydration as water or juices.  You can water milk down or add ice to it and add a touch of sweetner to make it taste better.  I recommend using stevia sweeteners as they are all natural, do not raise blood sugar levels or cause chemical reactions (mood swings, hyperactivity etc…) 

It is imperative that you increase your water intake (fluid) if you increase your fiber intake as the body pulls the water into the intestines to allow the fecal matter to soften.  If you don’t drink enough water then your body is not hydrated enough to complete this process and the matter will become harder.