“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.
No comments:
Post a Comment
Thank you so much for reading my blog!