This is a personal blog where I will explore physical and mental
ways to help control Crohn’s Disease. Although Crohn’s has no cure, I will
attempt to come up with a plan of action to help ease the severity of symptoms
of the disease in hopes to have a normal day to day living experience.
[*Warning! This is a
very detailed blog about what Crohn’s Disease is and its symptoms. I explain in
detail my experiences with the disease.
If you get offended by personal views or talk about poop[stool], this
page may not be a good read for you. I ask you keep an open mind and take this
journey with me as I attempt to ease discomfort and pain while dealing with
Crohn’s Disease.]
I am 26 years old. I was officially diagnosed with Crohn's
disease about 4 years ago, although I have been experiencing symptoms all
my life. My mother "jokes" around by saying that I came out vomiting.
I am not so sure of how much she is actually joking because much of my
childhood I remember always being sick. Daily pain and total discomfort
to the point where the high levels of pain become a new normal way of
life for me. Before I get into much detail about the symptoms I experience day
to day and the experiment I am doing, I must explain what Crohn's Disease
is.
WHAT IS CROHN'S DISEASE?
According to the cited website,
"Crohn’s disease is an ongoing disorder that is linked to
inflammation of the digestive tract, also referred to as the gastrointestinal
(GI) tract. It can affect any area of the GI tract, from the mouth to the anus,
but is more commonly found in the end of the small bowel (ileum) and the
beginning of the large intestine (colon). The damaging inflammation in Crohn’s
may cause pain and may make the intestines empty frequently, resulting in
frequent trips to the restroom. While its exact causes are unknown,
Crohn’s disease appears to be a result of a complex interaction of factors,
including:
-
Genetic
-
Immune system
-
Environmental
Foreign substances (antigens) in the environment may be the direct cause
of the inflammation, or they may stimulate the body’s defenses to produce
inflammation that continues without control." Symptoms of Crohn’s may come
and go with periods of flare ups at anytime.
(**
crohnsandcolitisinfo.com**)
My basic definition
of Crohn’s disease Ã
Crohn’s is an auto immune disorder. Imagine your body fighting against itself at
all times. Every time you eat, your immune system sees that as a foreign object
and attacks it leaving your body to not process the food and depleting you of
all nutrition. Every day is a battle that you feel you can’t win. The pain of
processing foods is almost unbearable. It almost feels as if you feel each and
every muscle in your abdomen trying to work the food through your intestines. The
Example I give is this Ã
Imagine eating a nice meal with your family. You have on your plate macaroni
and cheese, peas, and chicken breast. The food is considered bland, yet still
has some flavor to it. In the middle of your meal, you have a sudden pain in
your abdomen. [The description of this pain I frequently use is like Freddie
Krueger making one long continuous slice on the inside of your intestines.] The
pain lasts for about a minute and then it happens. *BAM!* you get a new
sensation of pain that is at your anus. [The description of pain I frequently
use is a double edge sword trying to up your anus.] The
pain is a sharp jab and if causes you to almost be paralyzed in your seat and
unable to move. When that pain subsides, you have a sudden urge to use the
restroom. Crohn’s disease only gives you a small window of opportunity to find
a restroom before you can no longer control the urge. You find a restroom and
begin to relieve yourself. The pain of
this can almost be described as contractions in childbirth, as well as the
relief that comes with after you finally finish. It takes you 30 minutes to pass
your food. You examine your stool and you find that you have only processed
some of the food you had consumed that day. You see macaroni noodles floating
in the bowl and green mush. [Yes, I look
at my stool quite often because it can tell you a lot about your body by the
color, form, and smell] You did not process half of your meal. This is a normal bathroom trip for you, and
you experience this every day at minimum five times a day. After such a workout, you return to the table
too exhausted to finish the rest of your meal.
SYMPTOMS OF CROHN'S DISEASE
According to my doctors I have a complicated case of Crohn's
disease. The severity of it is normally found in patients in their early
to mid forties. A person could have Crohn's disease and not show any symptoms
until later in life.
Symptoms of Crohn’s Disease described by my Colon and Rectal
Surgeon are as follows:
- Persistent Diarrhea
- Rectal bleeding
- Urgent need to move bowels
- Abdominal cramps and pain
- Sensation of incomplete evacuation
- Constipation (can lead to bowel obstruction)
- Fever
- Nausea
- Vomiting
- Loss of appetite
- Weight Loss
- Fatigue
- Night Sweats
- Loss of normal menstrual cycle
"Crohn's is a chronic disease, so this means patients will likely
experience periods when the disease flares up and causes symptoms,
followed by periods of remission when patients may not notices symptoms
at all.
In more severe cases, Crohn’s can lead to tears (fissures) in the
lining of the anus, which may cause pain and bleeding, especially during
bowel movements. Inflammation may also cause a fistula to develop. A
fistula is a tunnel that leads from one loop of intestine to another, or
that connects the intestine to the bladder, vagina, or skin. This is a
serious condition that requires immediate medical attention." [*
http://www.ccfa.org *]
[*If you have experiences most of these symptoms, I would recommend
you speaking to a GI specialist. Just because you have these symptoms, does not
mean you have Crohn’s Disease. The doctor has to perform an upper and lower GI
procedure and take a biopsy to tell whether or not you can be diagnosed with
Crohn’s Disease. *]
BACKGROUND STORY
Thankfully I have not had any surgeries to remove any parts
of my abdomen. The doctors warned me
that I will have to have surgery eventually and that is unavoidable. He said
that only reason why he hasn’t operated on me is because I am so young and he
wants more to work with later in life. He stated, “Even if I removed sections
now, I will still have to do a surgery later in life. Your complicated case
will guarantee a surgical procedure.”
As of today, I have a ten week old baby girl. Her name is Elizabeth
Grace and she is my blessing. Before I was pregnant, I was on a medication
called Remicaide. This is an IV infusion that was a magical drug for me. I had
to go for my treatment every 6 weeks. The infusion never eliminated my
symptoms, but rather knocked them down enough to be tolerable! I was able to
finish an entire meal without getting up from the table to rush for the
restroom. I no longer felt like I had a ticking time bomb inside waiting to
explode for no reason at all. I still
however experienced some abdominal pain, nausea, vomiting, mucus and/or blood
in stool on occasion. The pain was constant but tolerable. On the pain scale of
1-10, before Remicaide I was waking up with a 8-9 and going to bed with a 9-10.
I lost sleep. I lost weight. I lost all hope of ever feeling normal [whatever
that was!] After Remicaide, I was waking up with a 5-6 and going to bed with a
6-7 on a good day. Even on Remicaide I still had flare ups, and those put my
pain right back to the 8-10 scale. I have tried all diets recommended by
nutrition specialists and nothing seemed to work to help prevent the flare ups
or help ease the pain during the flare ups.
At the beginning of my pregnancy I was taken off the Remicaide by my GI
doctor. He said it was a liability to his office to keep me on the drug. He did
recommend two other offices out of the state that would administer the drug,
but insurance did not cover those hospitals. With me paying almost $200 a visit
with my insurance every six weeks for the treatment, I could not afford to go
out of network. Without the Remicaide
treatment I was afraid that I would go right back to where I started.
At first, the pregnancy was normal. The traditional morning
sickness took effect and all was well. As the pregnancy progressed, I did
notice some abdominal paid and some slight symptoms of my Crohn’s acting up. I
talked with my OBGYN doctor and he stated that these were normal with
pregnancy. I came to find out that practically any discomfort a person has
during pregnancy is completely normal.
By month 5, I was having such terrible pain in not only my abdomen but
also my back. I told myself that it was normal with the pregnancy and sucked it
up as much as possible. By month 7, I thought I was not going to make it to 9
months. I was in such great pain that I was then placed on bed rest. It hurt to
breathe, to move, and even to eat. My body did not allow me to eat or drink anything
by this point. I would drink water and it would immediately come right back up.
I would eat a small meal and immediately feel awful pain. Going to the bathroom
became practice for giving birth if felt like. I started having contractions
and the doctors had to stop them because it was too early to have the
baby. Bed rest was terrible. I had lost
so much weight and strength during the pregnancy that I needed help to get off
of the bed and needed help guiding me to the restroom. I was in and out of the hospital. Sunday,
September 14th was my baby shower. I had already missed one baby
shower because of being in the hospital so I was Not going to miss this one! I
woke up in a puddle of wet. I suspected that my water broke, but was so
stubborn about going to the party that I sucked it up and went. I was being
stubborn [One of my downfalls] and refused to go to the hospital just so I could
be sent home the next day with a there is nothing wrong note. [Long story
short: Every time I went to the hospital I was having contractions and they
would stop them by giving me a shot. Also, they could NEVER find my cervix. The
trips to the hospital, in my option, were a waste of time and money.] I was having contractions all day during the
shower. It wasn’t until 11pm that evening that they got so unbearable that I thought
she was coming right then! I texted my mother at 3am saying that she was going
to take me to my Dr. first thing that morning.
September 15th, I had a doctor appointment at 4pm that
afternoon. I couldn’t wait that long to see him. I called the office to see if I
could move up the appointment, but he was in surgery all day until 1pm. I
insisted to be seen, so I was scheduled for 9am with his nurse practitioner. As
soon as I was seen in her office, I was asked to sit on the table and relax as
they would check me to see if I was dilated. As I rested back on the table, the
rest of my water broke. I was sent immediately
across the street to the hospital. It was happening. My doctor came to see me at 2:30pm and
ordered medication to help the delivery progress because I was only 2
centimeters. By 4pm I was fully dilated and ready to push. [*turns out I didn’t
miss my appointment with him after all*] My sweet Elizabeth Grace was born at
4:45pm! Although she was 3 weeks early, she was a healthy baby. I couldn’t be
happier.
During the post pregnancy period, I was still experiencing
terrible back pain and almost unbearable abdomen pain. I thought it must have
been from me just giving birth, so I brushed it aside and sucked up the pain
and moved on. I went for my 3 week check
up and explained all the pain and discomfort I was in to my doctor. He stated
that such pain was not normal and recommended that I see my GI doctor to set up
an appointment. I did such that. I had an appointment on Monday, October 20th. By this point, I was unable to use the
restroom for 2 full weeks now. It was going on day number 12 that I was unable
to pass any stool. I was unable to make
that appointment because I was admitted to the hospital.
I received around the clock
antibiotics, an enema, and a CT scan where they found 3 masses in my abdomen that
had formed. [*No wonder I was in so much pain during the pregnancy!*] The
surgeon at this hospital thought it could be a life threatening tumor. He
refused to operate or take a biopsy to be sure. The hospital wanted to transfer
me to my choice of hospital. I chose a hospital in New Orleans because I wanted
to be close to my family and child in case anything was to go wrong. Before leaving
the hospital, they inserted a PICC line.
Monday, October 27th I was admitted
to the hospital. They did their own CT scan and saw the 3 masses, but did not
diagnose it as tumors but rather a severe infection/perforation. This was great
news! The doctor explained just how serious this was and how close I was to
becoming septic. I was placed on bowel rest and not allowed anything by mouth.
This was fine with me because by this point I was afraid to eat anything. It
was going on 5 weeks that I wasn’t able to eat anything and I wasn’t even
hungry. By the end of the week, I had received around the clock antibiotics and
TPN. After full week, the doctor stated that he would give me a choice. I could
stay in the hospital and attempt to shrink the masses or I could go home with
home health care and still receive the TPN in attempts to shrink the infection
there. I chose to go home. So, here I am!
At home.
Recently I have been researching natural herbs and oils to
help alleviate symptoms of Chron’s disease, pain, and depression. I am
admitting that during this entire process I have become depressed. I am often
too weak to hold my daughter. I am tied to this TPN bag. Although I now have
the okay to eat again, it hurts to process and to pass food. The only time I get
out of the house is for doctor appointments and church [and that is IF I am
strong enough]. I have decided to take as much control over all of this as
possible by creating a life plan or plan of action!
EXPERIMENT OUTLINE
I will focus on 2 specific healing methods: Physical & Emotional
Physical Healing will focus on:
- Natural herbs
- Oils
- Healthy diet
- Exercise plan
Emotional healing will focus on:
- Spiritual
- Meditation
-
Self Esteem Building
- Relieving Stress
I suspect that most of the methods of healing will go hand
in hand. Example being: Relieving Stress may be helped by some natural herbs or
oils.
Throughout this journey,
I hope to find a pain free normal way of life while also achieving inner peace.
