My plan
of action since being diagnosed with Gastroparesis has alot to do with self medicating with exercise and completely changing
my diet. I tend to consume more liquids than solids which is easier on the gi tract. I was never able to find any relief
with medications due to the side effects that only make my Gastroparesis worse. The added risks always outweighed the
benefits. Since my diet is so limited due to my Gastroparesis, I use either my 'Jack LaLanne' juicer or 'Nutribullet'
to help liquefy fruits and vegetables and alternate between various protein powder supplements in order to help provide
my body all the necessary nutrients. I exercise during my good days by using a home treadmill, resistance machine and
an abdominal belt called, 'Slendertone' which has recently been FDA approved. By trial and error I have continued to successfully find foods that work best for me.
I consume various types of sports drinks, Crystal Light products, Vita-water and Smart water mixed with Pedialyte
to help stay hydrated during my GP related weekly treatments. I take a daily liquid multivitamin or chew
gummy vitamins to help replace nutrients that my body lacks by not eating a variety of foods.
9/13/2005- I had another EGD procedure this
time with balloon dilation, stomach biopsy to help with esophagus constriction
(Diffuse Esophagus) due to acid reflux and my Gastroparesis. Doctors are not sure if the esophagus will stay open
or if the procedure will need repeated within the year. The constriction is very common with Gastroparesis patients due
to stomach acid and food that has not digested however 'Diffuse Esophagus' will not worsen but tends to become a permanent
condition.
12/1/2005-
Final meeting with my doctors. We have exhausted all possible tests over the past 19 months and still nothing to show
the origin of why my stomach stopped working. My doctors tend to agree medication at this point unfortunately that is not
designed for Gastroparesis will only add unwanted side effects so the goal is to continue with the alternate treatment
at home. I continue to have hope that one day FDA will find a medication to help all patients struggling with Gastroparesis.
1/7/2006- Alternate treatment (exercise,
heat therapy, liquid diet) continues to remain successful and I am finally making
my way back to a somewhat normal life.
3/10/2006-
Testing will continue for current problems with slow motility of the GI tract. Specialists are now sure this is related
to my Gastroparesis. Further testing on the pancreas will be observed as well liver levels because of possible food backing
up.
6/4/2006-
My Gastroparesis is now leading to other digestive problems and in general slowing the entire digestive process. I am
starting to get burned out of daily exercise to keep the food going so trying to find some outdoor activities. I am continuing
to have problems with dehydration (electrolytes).
7/6/2006-
After visiting the hospital over the weekend I was told by my doctors that my colon function (motility) is not working so
I am going back to my GI Specialists to discuss the options that might allow me to continue living a better or somewhat more
normal life. It could take 2-4 weeks to clear the colon completely out so liquids are now a normal part of my daily diet and
form of nutrition. Not sure of my future but anything is possible with strong support, hope and prayers.
7/7/2006- News from the docs not good and
coming to terms that the colon has little to no motility, at this point they are not sure
what to do next. I am trying to stay mentally grounded as well keeping my mind occupied with work.
7/15/2006- The colon is finally but slowly clearing
out day by day. I have learned a tough lesson over the past 2 years as well what true
friends in life really mean and if they will stick by your side through the best and worst of
times. I will move on with my life the best I can and accept what I have before me with God's help and I will be ok.
Whether you like it or not life is certainly full of changes, you may not like it but it is what it is....................
7/21/2006- Working with doctors in August on
limited upcoming tests to find out the plan of action now for the loss
of my colon motility.
8/5/2006-
Polyp, abnormal tissue growth located in colon were both completely removed this week. Gaining my strength back from
4 week strict liquid diet. I will be continuing with liquids until pathology comes back in a week with lab results
from biopsy. Doctors still not sure on plan of action on motility function of the colon.
08/21/2006- All of my doctors/specialists
have been truly wonderful these past 2 years, all additional treatment options have
been exhausted however I am grateful for their honestly and never giving up on me. I will be seeing another GI group
of 4 specialists late August in hopes of any other potential treatments or insight they can offer the other physicians to
help with the loss of motility with my stomach and colon due to the Gastroparesis. I have slowly learned
to fully accept my illness and each day living life to the fullest. One must never give up on hope however you must face
the road that leads ahead sometimes to the unknown. There 'is' always a light at the end of the tunnel.
09/23/2006- Now working on round #3 of testing.
There is a possible Gastric Pacemaker testing later this fall at a research hospital that
they might be able to get me into as well finding a Gastric Motility clinic/research hospital to help
find a way to make life more tolerable with my Gastroparesis.
10/15/2006- Recovering from medical procedures
and stomach/small intestine biopsy. Will be moving forward with hospital Dietitian
and Nutritionist mid November as well testing for potential Gastric Pacemaker and colon motility.
11/6/2006- Trying to maintain my weight and
stay hydrated as well out of the hospitals. Amitiza- A new medication on the
market for the colon did not work seeing I had a very bad reaction so back to square one.
11/15/2006- Long meeting today working with
a team of registered Dietitians at the hospital to get back on my feet. My weight is at an
all time low of 112 pounds and my body is starting to use muscle for fuel-not good. I might have hit rock bottom but I will
continue to fight to get back up that hill and get better! Trying some alternate treatments for the next 6 weeks if that does
not work I am seriously thinking of using "Nocturnal Jejunum feedings" to get my weight back up.
12/09/2006- So far gained
2 pounds, up to 114 with the new diet plan. Still trying alternate foods and vita-waters/protein drinks however I
am finally having more good days than bad days. Now the real test-Holiday foods, heehee. Next visit with Dietitians
in 2 weeks. Indeed life is good! :)
1/01/2007- A New Year 2007 and another chance
to make a fresh start. Opting to not seek continued help from Dietitians. The new
diet was not working so reaching from strength deep within to continue the fight! Sure I have my bad days, we are all
human but I will never give up the fight....
2/01/2007- Continued
monitoring on my pancreas levels with new diet. Still in question for ERCP procedure due to possible Gastroparesis complications
with biliary ducts, I prefer not to have it so undecided at this moment.
2/20/2007- Having great success
in therapy helping to deal with my Gastroparesis as well coming to terms with the other parts of my life
that it affects on a daily basis.
3/10/2007-
Giving massage therapy a try to help with the bowel, stomach pain and relax the muscles from spasms. Thank goodness weight
is holding steady around 113, WHEW!!
3/29/2007-
What a wonderful Gastroparesis focus group meeting tonight and I just want to say you are all in my prayers. It truly was
one amazing experience to finally meet face to face with other Gastroparesis patients like myself.
4/26/2007- Trying to find
something to keep my intestines going-Miralax is making me dehydrated and causing fluids to retain in my bowels.
I can't handle much more liquid Drano-Golytley surgical bowel prep-similar to having colonoscopy prep once a week.
The specialists/surgeons can not seem to come to an agreement on surgery to help maybe eliminate some of this pain
and pressure so I might have to consult with another group of doctors. The fun never ends right? NOT!
5/14/2007- Dr. Wells has been amazing and I thank him
for being my shoulder to lean during the most difficult times. I think my acceptance living
with Gastroparesis has come to full circle now however I refuse and will never accept not having 100
percent of my normal life back. This gal will always keep her boxing gloves on. You know, Life IS worth fighting!
8/8/2007- Working with specialists
on upcoming extensive blood and genetic testing to see if I could possibly have any underlying conditions
such as Lupus, etc that could play a part in my Gastroparesis. Gut kicks that maybe I might have answers, one can only hope
right?
8/25/2007-
Met with a wonderful Hematology group and amazing doctors. Went through my first round of extensive blood work and second
round next week. I told my doctor this is it, I will not be seeing anymore specialists nor more testing, enough is enough
already right, gees! Putting my faith in the good Lord and hope that maybe they can after 3 years 6 months
connect the dots. Time will tell.
9/8/2007-
All Hematology tests came back Thursday and seems the only direction is pointed back to severe Gastroparesis which
has my body all out of sync and causing alot of organs to just not function properly. There are no more specialists
left for me to see nor nothing at this point anyone can do. After 3 years 6 months it is now shifted to acceptance.
My true strength and character is now going to be tested so time for a new life and whatever my future may hold in front of
me.
10/8/2007-
Keeping the faith and staying mentally strong for upcoming surgery November 2nd. Please keep the surgeons/doctors in
your prayers for hope and strength during this difficult procedure.
11/1/2007- READY FOR SURGERY!
:)
11/10/2007-
What a birthday gift of continued recovery physically & mentally from one 'Hellish Nightmare' surgery of twisted
bowels, severe dense adhesion's pulling down from my stomach, cleaning up strangled and gutted reproductive organs, freeing
up my bladder, etc. It was alot more than ever expected from my surgeons who told me and my family they literally sweat
the entire surgery with one refusing to ever go back in surgically. GP still present and 50/50 chance my colon function will
return back to normal. Of course this surgery is only a temporary fix seeing the severe dense adhesion's will grow back in
time, they are just not sure when. I am trying to find some hope.
12/17/2007- Officially released as of this week from all
Surgeons, Specialists, Doctors only to schedule yearly follow up appointments, scopes and biopsies.
There is nothing else left that medical technology has to offer and I have exhausted these
past 3 years 10 months all testing available to my doctors. Surgery was not a success for the motility of my GI organs
due to Gastroparesis. They were able to take down alot of scar tissue/adhesion's and untangle one heck of a mess but
found through testing it is not responsible for my Gastroparesis. I would have not done anything any different
through these years and at the end of the day I can say you know-'I fought this battle with everything I have, not giving
up, nor giving in but pushing with my doctors to find answers.' My life now is in the hands of future medical
technology- Gastroparesis medications and a possible cure. I have a new pair of boxing gloves, ready to keep up the fight!
I sure have learned alot along the way and hoping I can help many other fellow Gastroparesis patients through their life journey.
Fighting is worth it! Life is worth it & YOU are worth fighting for!
1/17/2008- 'As a GP survivor,
I am well aware of just how debilitating Gastroparesis can become. When I can offer someone
else hope, I go to bed with a fulfilled life.'
2/8/2008-
What can I say on my 4 year GP Anniversary date but here I am and will keep on fighting! Looks like the boxing gloves will
stay laced up!
3/24/2008-
Having seizures. Valium helps with them while Neurology looks into possible link of the seizures due to Gastroparesis.
3/27/2008- Vagus Nerve/Gastroparesis connection-Are we
onto something? Continuing Valium therapy and so far in past 4 days only had one seizure.
3/28/2008- Life may not always be a bed of roses. Think with
your brain, then your heart. When you do good onto others, good will come back to
you.
4/3/2008-
The day that life forever changed and time stood still. My CrystalBlue passed soundly away in her sleep on my bed with
her head on my pillow. This night I allowed her early sleep instead of GP office time with me which I never let happen, this
night she wasn't by my side, did she not want to me to see because of the pain it would have caused me? I know she is
still here in spirit by my side waiting for me to follow her through the gates of heaven. She was my everything and
indeed my heart is broken and shattered in a million pieces.
4/8/2008-Neurology tests came back and had meeting to go
over everything and long term care plan. I am waiting to meet with my doctors tomorrow
as well Cardiology group next week. To regenerate nerves would be impossible. Time to do alot of soul searching and blessed
to have my CrystalBlue home as of this afternoon. I made a special bed with her white blanket and beautiful crystal blue urn
and her favorite toys in it. I find peace and comfort in knowing she is now with me again and waiting to be once again by my
side.
4/9/2008-Appointment
with doctors tomorrow to discuss seizure relation to my Gastroparesis. All medications available on the market Neurologists
fear will only create other GI organ problems. They gave me medication to take home earlier this week but the risks do highly
outweigh the benefits.
4/11/2008-With
the seizures it has been decided after alot of soul searching and wonderful compassionate and understand specialists
the time has come to retire early after 20 years of working and go on permanent disability. The 'They don't ask
and I don't tell policy' with the company came full circle and I think corporate was more than a bit surprised with the
Gastroparesis Awareness Campaign organization and my life behind the scenes. I am at peace with the decision and indeed time
to give my body a break. In life one door may close but another one is always waiting to open.
5/12/2008-Time sure is flying by this month. It's
amazing but nothing is sometimes the absolute hardest thing to do. Making the decision
to leave the corporate world and give my full time and attention to the Gastroparesis Awareness Campaign organization
I started 3 years ago sure was the best decision of my life. Helping others around the world is truly priceless!
6/24/2008-Summer and taking time to relax but pushing
forward on the Gastroparesis Mission! I have come to realize sad but true that in life sometimes
society can be awfully quick to judge the book by its cover. If they don't walk in your shoes never expect others to
fully understand a 'unique' life with a disability. We are human but just living life a bit differently with a creative
touch, compassion and a whole lot of heart!
7/9/2008-Taking
care of a pup is well a HECK of alot harder than 11 years ago before I was sick, what an awakening indeed it has been the
past few weeks. Takes more than myself to care for the little one but she sure does reminds me of my little CrystalBlue.
Animals give abundance of unconditional love and can be great therapy for the soul :)
7/19/2008-More tests, more tests, more tests, so many doctors
come up with different theories on how I got Gastroparesis and well seems no one 'really'
knows the mystery question of why?.. During this next month of some very HOT temperatures I am doing
my best to increase fluids so I can stay hydrated and out of the hospitals. Trying to stay in remission with my flair ups
and keeping busy sure helps the mind!
8/26/2008-Lower
left mass found during a routine ultrasound. The surgeons are not sure what the mass is, first thinking it was bowel wrapped
together with adhesion's but since they ordered a cat scan it now shows a mass not a bowel adhesion problem however the
mass is stuck deep between the intestines so it is going to be very hard to even get to the location surgically.
9/26/2008-Exam and follow up surgical consult to get
my surgery date October 8th. I can't wait to have the mass taken out, makes me a bit uneasy
knowing it is there and I can't wait to finally get some normal sleep. There comes a time when you must get that 'Game-Face'
back on, I am ready!
10/9/2008-I
am physically exhausted, mind is strong but my body is tired. I am not sleeping very well either which only makes me more
drained. Surgeon consult today went far from expectation, they all feel I could not go through another surgery
right now, they are now going to keep monitoring me on a monthly basis, so more repeat testing. I am just tired of being tired,
sounds funny doesn't it? Yes, one can still keep a sense of humor, you have to in life. I am B L A N K.....
10/24/2008-This week was final testing. Seems next game
plan to remove part of the colon they feel is far too risky and I would not make it through
another surgery nor the recovery process. After a split second decision I agreed. There
is still much, much more Gastroparesis awareness to raise, many others to reach out and help to inspire to keep
the good fight! I also have alot more time to annoy everyone, heeheehee! I left my surgeons office shaking his hand with a
smile. I won't be seeing my surgeons for another 6 months. I must be proud for my GREAT fight I have given
over the past 4 years, I continue to find peace within. Indeed learning to appreciate far more now the little things
in life, the things that make you smile :)
11/10/2008-WHEWWWWWHOA!
I made it, another year, another day and now I am 37, where did the time go? Birthday cake for everyone!
12/3/2008-Time for my records to move to Oncology? My
current surgeons now realize even maybe things are too complex for them to handle,
I have to be ok with their honesty and I am. Hoping to get into the new pain mgr doctor within the next
few weeks, solid sleep would be a blessing about right now minus pain waking me up. Continuing to take things one day at a
time and sometimes even one hour at a time but you can't hold a good gal down, got those boxing gloves laced tight!
12/12/2008-Surgery date was set yesterday for December
31st, the surgeons are not sure if there is much that can be done. My Gastroparesis and
related bowel motility issues will be a lifetime problem, they feel it is best not to remove any of the colon or intestines
at this point.
12/16/2008-Surgery
postponed. Can we say my patiences are running thin? I am ready for a one way ticket to Hawaii, celebrate Christmas with
a book in one hand and a margarita in another.
12/21/2008-Surgery
now rescheduled for February 2nd. Thank goodness! 1/14/2009-After
meeting with all my specialists, heading back to main surgeon January 20th for final review, going over all risks and
benefits of upcoming surgery.
1/28/2009-Recovering
from Meningitis, will be 4-6 weeks, surgery has been postponed until March and upon being released from Neurology. I
thought Gastroparesis flair ups were bad! I think I have just found another Monster-Meningitis!
2/10/2009-After follow up with Neurology this week and
talking to my main surgeons office, surgery will be postponed for quite sometime. The post
Meningitis part of balance and hearing issues still have yet to resolve. They can't give me a time, could be days,
weeks or months, so I need extra patiences. I can't wait to drive and get the heck out of the house, this is crazy! I feel
jailed in my own home, LOLOL! that did sound FUNNYYYY! You know me, never one to stay seated too long, I like to go,
go, go! I am however finding much success behind the scenes with new Gastroparesis Awareness Campaign Organization projects
so working full time at home while my body heals is proving to be VERY successful.
3/3/2009-Hematology/Oncology running another round of
blood work. Due to the Meningitis and my immune system it is still a long road to recovery
and the game plan is holding off on surgery. Once repeat testing is done end of April they will re-evaluate the left
unknown mass, if it is still stable as show last month then we continue the watch and wait game however if it has grown
then Hematology/Oncology feels it is time for my Surgeons to go ahead with scheduling surgery. It is estimated to be another
2-3 months to finally rid the Meningitis symptoms and a possible year for my body to make a full recovery. My Gastroparesis
has been very angry lately with all the medications.
3/18/2009-Today
marks 5 years that have changed every aspect of my life- Idiopathic Gastroparesis. I don't look at my 5 year Gastroparesis
Anniversary as a bad thing, I truly feel blessed. If I look back over the years, Gastroparesis has completely changed
me inside and out. It has made me a far better person for it too, that is something I can't deny. Gastroparesis could have
taken my life many, many times but I refuse to let it control me and I will continue to find ways to work around those bad
days. Indeed today I celebrate five years of a new life and many, many more years of a GREAT fight!
4/15/2009-5 years later and I have one heck of a team
of specialists. They will continue managing each symptom as it arises. I couldn't
ask for a better team of doctors. Time to continue the good fight and I am ready! :)
5/18/2009-Wow! spring time already! enjoying the nice
weather before the heat and humidity return for summer. I don't get out as much as last
year due to limited energy but hoping for more good days ahead! Repeat catscans continue every 3 months for any changes
to give my surgeons the green light but blessed so far things continue stable with the left mass. I continue to live by the
day and not plan out since I don't know how I feel physically day to day.
6/8/2009-Long term, unknown medical conditions such as Gastroparesis that
lack the research and awareness I have learned can completely flip your life upside down
to great depths. I am in the process of questioning my next step medically with my surgeons. Our
great government and Social Security system is back-logged another year and 6 months for county cases. This now
leaves me waiting a total of 3 years for approval. Alot on my plate and just trying to sift through and figure
out which to tackle first. Let's just say if you are going through far too much in your life I totally understand how
you feel and my heart truly reaches out to each and every one of you.
7/7/2009-I had my upper scope last week, darn if I don't
have a really bad case of gastritis from an infection as well Gastroparesis doesn't help
the situation either so back on meds for the next 30 days. They took my coffee away and any caffeine, I
feel like a walking zombie!
7/23/2009-My
GI doctor called late last week on biospies that were taken during the upper scope procedure. Seems they can not do any further
dilations at this point because the choking sensations that still continue are not from constriction but lack of smooth
muscle contraction in the esophagus. What from? of course-my Gastroparesis. They would like for me to have the 'Esophageal
Manometry Test' placing a tube down my throat into my stomach-while awake. Of course my question is will there really be anything
you can do to correct the situation and their answer was-no. Now why would anyone just do a test like this if there is no
cure nor medication to help things? I was strongly advised to avoid solid foods and stay on liquids. I am now already at
90 percent daily liquids. They are going to run a follow-up catscan next month and then I need to schedule surgery with
my surgeons. I just am not mentally ready for a major surgery, I am not sure I will ever be at this point. I have honestly
been putting it off for almost two years now.
