Life with Gastroparesis and Endometriosis

I have moved over to wordpress...

2011-10-09T17:15:00.000-04:00

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! :-)

Thinking Outside of the Box...

2011-09-24T16:42:00.000-04:00

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!

Reboot & Fat, Sick & Nearly Dead Movie
Pressed Juicery

Dr. Joel Fuhrman
Mayo Clinic

Love.Hope.Prayers.

Sarah

Heading to Reproductive Endocrinology...

2011-09-23T15:53:00.002-04:00

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 15^th, 2010 and February 4^th, 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 13^th. 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

More Test with the GI Doctor...

2011-09-21T19:45:00.000-04:00

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 29^th. 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, 20^th! 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

Crazy Days...

2011-09-15T20:48:00.000-04:00

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

Should I or Shouldn’t I…??

2011-09-13T19:59:00.000-04:00

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.

2011-09-13T11:50:00.000-04:00

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!

I am not sure of this whole blogging thing...

2011-09-10T19:34:00.000-04:00

Hey World!

So here I go with my first blog and post! I wanted to start this to share my life with the various health issues/problems I have to deal with daily...some of these health issues I have had since birth and some my team of doctors are still trying to diagnosis! Some post will be me having bad days struggling though my symptoms and frustrations, and there will be the wonderful days or great break through! I will also talk about juicing and other non-traditional treatments as well as traditional. I am sure I will write about other things that have and or are happening in my life...hope this blog will be an encouragement, or give you new ideas and treatments, as well as showing you that there is someone traveling with you on this journey. Maybe it can help you with someone you know that is going through this or some other health issue.....Please feel free to ask me questions and as well leave your own comments about your journey. Thanks for sharing!

Here's to Good Health and Future Posts!

Sarah