Life with Gastroparesis and Endometriosis
A Life journal of me Sarah. I have C.A.H., Gastroparesis, Endometriosis and other health issues the doctors are trying to diagnosis. This is a blog to encourage you in your fight to live the fullest life possible with GP, Endo or anything other health issue you may be going through!
Sunday, October 9, 2011
I have moved over to wordpress...
Please continue to follow me over at my new blog location! http://livingencouraging.wordpress.com/ I am only moving because there is move flexibility with designs and layouts! Thanks so much! :-)
Saturday, September 24, 2011
Thinking Outside of the Box...
I know there is a “Gastroparesis Diet” out there, but what it tells us to eat
is everything that we are “normally” told to not eat too much of! In this
diet we can’t really eat fruits or veggies! Also, it is broken down into three
groups. Group Three is where your fat is limited to 50 gm per/day and fibrous foods are restricted. You
can eat the most food, but still no fruits or veggies however you may try &
eat a little fish & poultry. This one is designed for long-term
maintenance. With Group Two they allow you to have additional
calories by including small amounts of dietary fat; with less than 40 gm per/day. When you have GP
you need to try to avoid fatty
foods and oils as much as possible, for the reason that they delay stomach emptying! The worst one to be at is Group One, this just consists of liquids! Liquids
usually leave your stomach quickly by gravity alone. If you can do this one you
need to be in the hospital to keep from getting
dehydrated, as well to make sure your body is getting adequate supply of salt and minerals that your body needs to survive! That’s just a
quick overview of the GP Diet which one of the BEST GP doctors came up with!
I have always eaten “pretty healthy” by American standards, before I was
diagnosed with Endo and GP.
As I have been
going through all these crazy health issues I have been really focusing on my allover health…and just not on each condition like some of my doctors have been doing. I love my team doctors & they
have helped out a lot through this wild
tangled roller coaster ride these past two and half years! We need to focus on our “whole
body wellness”. What I mean by this is that we need to look for other
outlets/sources to get “REAL” nutrients into our body to help heal it, give us energy and to cleanse us naturally!
When I did the GP Diet, I
felt & had worst symptoms! I was pretty much on Group One & Two. Now,
let’s take a moment here to think about this…Why did I feel worst? Was the
GP just getting worst? When I
did the GP Diet all the foods were HIGHLY processed, and had very
little nutritional benefits, to help my body to perform as well as to help heal
its self! You just cannot stay healthy or live to long if you keep eating foods
in those GP Diet groups continuously! So when I
started to move outside of the GP Diet “guidelines” by blending wonderful very healthy
smoothies with a Vita-Mix blender, which I would sip on
over a course of about four hours. I started feeling “little” better! The
smoothies would consist of carrots, kale, spinach, frozen strawberries, frozen
blueberries, frozen, peaches, mangos, apple juice, and we would put in this
AMAZING stuff “Perfect Food Super Green Powder” made by this GREAT company “Garden of
Life” …etc. In addition, we juice
“wheat grass”! I would also try different kinds of whey, soy,
vegan, and liquid proteins to put in the smoothies…I found out later that I
would throw-up the protein anytime it was put in…so we stopped with the protein
and kept going with the smoothies! After doing smoothies for about three-four
months without the protein I started to throw-up a little bit of the
smoothies…so my thought was that the Vita-Mix was doing its job by keeping the whole fruit & vegetable that my stomach was protesting…hehe.
No worries my mother has a
wonderful juicer made by Breville. By means
of using a juicer you are able to get the full
benefit of the fruits and/or vegetables you are juicing; but you do not have
the whole part like what you would have in a
smoothie! I have been juicing continuously going on two months now and been able to keep the juice
down, which is wonderful! I am still not able to take in much because my
stomach is extremely small, which fills up very fast! There are some great movies & websites about juicing, which I have posted at
the bottom of this post. In addition, another great find I have been using for
a month now is “RAW Probiotics” the women’s formula made by one
of my favorite companies “Garden of
Life”!
I have noticed already a little difference with having taken this…and the one of the best
part of this Probiotic is not that it is the BEST on the market…it is that you can OPEN the capsules so you can put it in your cold drinks and/or foods! I will post later about how probiotics and digestive enzymes are so good for you…especially people
with gastrointestinal issues!
To sum all this information up…I
would just like to see GI/GP doctors to think more on the holistic side of things as well as the medical side of things! I know there are
doctors out there that do work on just the holistic side of things…but we need
to have them “mesh/fuse” together! As, I look at websites about GP trying to find out more about GP and the ways to “live” with it…it just makes me sad, mad
& makes me want to help try to change the way we all look at this disease
as a whole…There has to be a BETTER way to live with this and other
diseases like this! We just have to be willing to think outside the box as well
as our comfort zones!
Side note…I have the GREATEST respect to ALL the wonderful doctors that are & have helped US and those who have GP! So what I have said in this post
is not to be disrespectful in any way! Thank
YOU for all your hard work!
Websites and great info about juicing!
Love.Hope.Prayers.
Sarah
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Friday, September 23, 2011
Heading to Reproductive Endocrinology...
This past
Wednesday, I had an appointment with my amazing GYN doctor, named Dr. Jane Limmer at Duke Hospital. It was just my normal three month follow-up for my
endometriosis. Dr. Limmer is the BEST
and most caring doctor I have EVER HAD…she
calls to just to check-up on me! Anyways…since I have C.A.H. and Endo she wants
me to go to Duke Fertility Center and see a highly specialized
doctor in “Reproductive Endocrinology”.
They can really focus on the C.A.H. and Endo as whole and not two separate
issues!
It is going to be
great to have a fresh new perspective on these two issues as well to see what
the reproductive endocrinologist will have to say about the next steps in the treatment
of the endo as well as maintaining the C.A.H. In view of the fact that I have
not had great reactions to the birth controls or the Lupron Depot shot! As
well, that I have already have had two surgeries for the endo; April 15th,
2010 and February 4th, 2011. The pain along with other symptoms, are
already starting to come back given that I am not able to take the medicine
that can suppress the endo…My appointment with the reproductive endocrinologist
is October 13th. So here’s to new ideas and perspective! And the
great thing is that I still get to see Dr. Limmer! J
Love.Hope.Prayers.
Sarah
Wednesday, September 21, 2011
More Test with the GI Doctor...
Yesterday, I actually had a
pretty good appointment with my GI doctor from Duke. He was not thrilled to see
how I lost so much weight since I last saw him. Just this week I have lost 4
pounds! So here is the update. He wants to do another CAT-scan with contrast;
since the last one has been a few months and that when he was feeling my
stomach/abdomen it was hard as a “rock”! It’s not like I have been doing really
any abnormal exercises to make them “rock hard”…hehe! J The scan will be done
next Thursday, September 29th. Also, what we can see on the scan
since he is doing my abdomen & pelvis is if any large endometriosis cyst
are present…which I have been having endo pain again! L Then, he wants to do
the colonoscopy and the Esophagogastroduodenoscopy (EGD),
where he will inject the Botox into the pyloric sphincter. These
procedures are going to be done at the same time and have to be done in the
hospital so very unfortunately, the earliest was Thursday, October, 20th!
As it stands, if the Botox doesn’t work and/or I do not do well with it…the
next step with be them putting a Jejunostomy (J-tube) feeding tube /percutaneous
endoscopic jejunostomy (PEJ) this one would be
used for draining my stomach, due to the intensity of my nausea, as well that I
throw-up! So I could have an onboard “pluming system” to help me get my
nutrition…hehe
The liquid Phenergan, which I am now taking, is just BRILLANT!!! Also, my
acupuncturist started me on this great product from Gentle Warriors called “Grow
and Thrive” it is a liquid formula designed for pediatrics to help
weak digestion, poor appetite, and low resistance.
FU N C T I O N S
A nutritive tonic that fosters robust growth by
Strengthening the Spleen and Kidney (the sources of
post-natal and pre-natal Qi) and promoting the adequate
assimilation and smooth passage of food and fluid
through the Stomach and Intestines
IN D I C AT I O N S
Poor appetite, aversion to food or a limited
eating
capacity • Indigestion with belching, bloating,
colic
(cramping or gas pain), constipation, or
diarrhea • Aides
in reducing food poisoning or food sensitivity
reactions
• Indigestion, nausea, or loss of appetite
accompanied by
slight fever or chills following exposure to
windy, humid,
cold or hot weather
CO N T R A I N D I C AT I O N S
Vomiting • Watery or explosive diarrhea •
Dysentery or
food poisoning with high fever • Suspected bowel
obstruction or appendicitis
These are all the Chinese herbs that Grow and Thrive has in it:
ü hyacinth bean (bai bian dou)
ü Chinese yam rhizome
ü (shan yao)
ü lycium fruit (gou qi zi)
ü poria (fu ling)
ü Job’s tears seed (yi yi ren)
ü lotus seed (lian zi)
ü euryale seed (qian shi)
ü roasted Chinese hawthorn fruit
ü (shan zha tan)
ü platycodon root (jie geng)
ü tangerine dried rind of mature
ü fruit (chen pi)
ü radish seed (lai fu zi)
ü phragmites rhizome (lu gen)
ü fennel fruit (xiao hui xiang)
ü magnolia bark (hou po)
ü fried kudzu root (chao ge gen)
Check out this herb
solution as well as the other ones that they have for digestion it could really
help you out with your journey! As always hang in there and no matter
what you are going through look to God, your friends and family! YOU CAN AND
WILL GET THROUGH THIS!!!
Love.Hope.Prayers.
Sarah
Thursday, September 15, 2011
Crazy Days...
Well, this
week has been a rough one, but these past two days...wow…intense! I don't know
what's going on but, I have been more intense pain in my stomach and in my
liver/rib area with the pain level close to 6/7, then at times going higher.
Then on top of the fun pain, I have its friend nausea. I like to think of
nausea as pains "school yard bully", it likes to come by way of more
force with more intensity to slam ones opponent
to ground like a bully would do! Yes, I have nausea 24/7
and it does come in waves of bad to worse...but these past couple of days I
haven't been able to keep food down! That was with my anti-nausea
medicine...now I can't even keep any pills down...
Yesterday,
I came VERY close to going to the ER...I do not have insurance so that would be
an easy $1000 for one visit and that's if they just kept me for a
couple hours...what is a girl to do? But, I will tell you this if
I continue to get worse I will go into the ER! But, as I
laid in bed today my wonderful mother was calling my GI doctor at Duke to see
if he could call in another anti-nausea medicine that was in
a liquid, dissolved strip, injection or any other form besides
pill for me to take...still waiting to hear back from him since he was
in procedures all day today! With all of this I have had a
bad migraine headache I get this a lot and take two kinds of medicine
for them...but you guessed it...I haven't been able to take it since I am
throwing-up all the food and pills! YAY!!! FUN TIMES! :-) Last night, I got
only about 3 hours of total sleep...
There is a silver
lining! There is ALWAYS one! ;-) Today, like every Thursday I had my
acupuncture session with Andrew Nowosad at the Acupuncture Healing
Center. He was able to help tone down the nausea a wee bit as well as the
pain! Also, he always helps take away my head aches! I encourage you
to try to find a well trained and a great acupuncturist like
I have found in Andrew. Now, acupuncture does work, however you have to be
in it for the long term...you can/could see short term results although
the breakthroughs are scene after you a couple months treatment or sometimes it
might take shorter or longer! I have heard of a lot of people trying it and
they quit after a couple treatments, due to the fact they didn't
"see" the results as "fast as they wanted"; so stick with
it!
Last thing
I promise...my GI wants to see me to talk about doing a colonoscopy
finally and doing the procedure for the Botox injections to relax the pyloric muscle in
the stomach...also about the marvelous feeding tube! So it
should be a very interesting appointment on Tuesday.
Faith. Hope. Love.
Sarah
Tuesday, September 13, 2011
Should I or Shouldn’t I…??
Ever since I found
out about gastroparesis and that I had it…it’s been a hard thing to swallow…no pun
intended there! ;-) You know how GP completely disrupts your life from even the
littlest things like being able to get a cookie at the food court in the mall
and not worry about having more pain and throwing it up! Or going out with your
friends to a local restaurant or bar just to have fun…these are things I have
not been able to do in a long time! Well, I am only able to eat on a VERY good
day about 700 calories. Normal days I get about 300-400 calories! As of right now I am 114 pounds. I was 168 pounds a year ago! Which, a lot of people are saying it is great you lost all this weight...well yes, some of it, but not like this! I am amazed
that I have not dropped weight faster…this might be because I have to take prednisone
which makes you gain weight and I take Phenergan 25mg tabs every 6 hours. I
throw-up even with that in my system! Anyways, the reason for this post is that
the doctors want to put a jejunostomy feeding tube in me. The J-tube like most of you know is a tube inserted through the abdomen and into the
jejunum (the second part of the small bowel) to assist with feeding and to
provide me with nutrition and medicine if needed.
I am really not
sure about getting the J-tube; because of how it looks…I know that sounds so
shallow! Also, it can cause more problems like infections, pain, etc. But, it
would give me the nutrition that my body really needs and I think it might help
a little with energy…I just don’t know if I am at that point yet to “jump in”
and get a feeding tube…I am continuously thinking about this and maybe through
it might be good to share it here because I know it is a tough decision for
anyone!
Here’s to Good Health!
Sarah
The Details.
So, I am a 26 years old
and right now, I am unable to work due to me having all of the following
conditions, gastroparesis, endometriosis, migraine headaches, right hand only tremors,
extreme fatigue, excessive nausea and congenital adrenal hyperplasia, plus some other things going on the doctors are
not sure of! On 06.23.2011, I was diagnosed with Gastroparesis. This
is a condition in which the muscles in your stomach
do not function normally. My stomach function is 33% at 4 hrs. and
normal results for the 4hr mark is 10%-0%. The way they measure your
"stomach emptying function" is by a test called "gastric
emptying study", which is preformed by nuclear medicine physician.
You get to eat radioactive eggs and stand in front of a scan from time to time.
It is not a fun test/scan to do! Anyways, ordinarily strong muscular contractions propel
food through your digestive tract. But in gastroparesis, the muscles in the
wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. This is interfering with my digestion, causes excessive nausea, and I vomit some of my food (when I
can eat), and it has messed with my blood sugar levels and wreaking havoc on my body from a nutrition stand point; as well as messes with my bowel movements/habits.
YUCK! I know I can't believe I just told the world this...haha...I have lost 53 pounds since 04.15.2010. I am abnormally fatigued for someone of my age, who used to play all kinds of sports, go
out on the town with friends and work 40 plus hours a week! No matter how much
or little I sleep, I am still exhausted. I take naps a lot and sit around the house,
too. I do try to get outside as much as I can to take little short walks, to
keep the body moving because that is KEY! There is also no cure for gastroparesis!
On 04.15.2010, I was diagnosed with Stage 4 Endometriosis. Endometriosis is a very
painful disorder in which tissue that normally lines the inside of
your uterus — the endometrium — grows outside your uterus. Endometriosis most
commonly involves your ovaries, bowel or the tissue lining your pelvis. Stage
4 is the worse stage you can have which means severe
disease, deep endometriosis, dense adhesion and
it was everywhere in my abdomen: colon, bladder, both ovaries,
urethra, uterus, stomach and I had a “Chocolate cyst” that
made my right ovary burst open, and it was almost the same
volume size as my uterus! I have had two abnormal surgeries for endometriosis,
the first was on 04.15.2010 and the second was on 02.04.2011.
I will have to continue to have surgeries that
use a laser to cut out the adhesions, and cysts. I am unable
to take birth control. This is due to how it affects my 17-Hydroxyprogesterone. Birth
control is one way that can help slow down the growth of the endometriosis. I
was in absolute 24/7 pain before the surgeries. The first one
helped a very little, the second took a little while to kick in. I was pain
free, besides when I ovulated and when I was on my cycle. Now, I am back
starting to have pain/pressure even when I am not ovulating or
on my cycle. Plus, when I am ovulating or on my cycle the pain/pressure is
getting more intense again! The pain/pressure is in my abdomen and
lower back. In addition, I have more headaches, migraines, nausea,
and if that’s not all more fatigue!!
On 03.02.1985, I was diagnosed with
classic Congenital Adrenal Hyperplasia (CAH). The only
reason I was diagnosed almost died at 3
weeks of age. C.A.H is a collection of genetic
conditions that limit your adrenal glands' ability to make certain vital
hormones. In most cases of C.A.H, the adrenal glands don't
produce enough cortisol. The production of two other classes of hormones also
may be affected, including mineralocorticoids (for example, aldosterone) and
androgens (for example, testosterone). I have to take corticoid
steroids (Prednisone) and (Fludrocortisone) twice a
day, which affects my body, and if I do not take them I can experience a life-threatening "adrenal crisis," due
to inadequate production of cortisol from the adrenal glands. An adrenal crisis
can result in a seriously low level of sodium in the blood,
diarrhea, vomiting, dehydration, low blood sugar levels and shock. With C.A.H.,
my immune system is compromised so I can get
sick much more easily than the average person. My body has a harder
time handling stress because of the C.A.H. With me having to take the
corticoid steroids, I have to get a bone density scan every two years and my
most recent measurement indicates there has been a statistically
significant loss of bone mineral density equal to 6.4%, which
means compared to my previous bone density study reveals evidence of ongoing
bone loss, suggesting the existence of an ongoing disease process. C.A.H. affects
my life greatly by, having to go to an Endocrinologist every
3-6 months (labs, visit, etc.), have to take corticoid steroids (and the
side-effects that come with them), low immune system (which
means I get sick more often), etc. and it complicates the
treatments of the above stated conditions and illnesses. I have not
meet ANYONE who has this disease! I know there are people out
there who have it and are embarrassed to have it, don't be! God made
you! We ALL have a purpose and a destiny! I would love to hear from you if
you have C.A.H.! There is no cure for Congenital
Adrenal Hyperplasia.
Quick note, it has made
dealing with this a little harder for me since I lost my job in March 2009.
Then I lost my unemployment benefits in March 2011. I now have no
money or insurance, but I am SO extremely thankful for my parents for
letting me live with them! And I have been able to get on a program called Project Access, here in
Durham County where most of my medical costs have been PAID! Plus, I
am getting food stamps which help out a lot for food...it's not like I can eat
to much right now...hehe ;-)
So that's all of the
health craziness in my life! I don't see this as the last of me...I see this a
mere hurdle that life has given me to challenge me to make me stronger! So
whatever you may be facing keep FIGHTING and NEVER EVER GIVE UP!
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