Update with Gastro

Well, I had my appt with the gastro doc today. He decided to go ahead and put me down for gastroperisis AND IBS. Why? Well after taking in all the facts of all my symptoms and doing the endo and the colonoscopy, as well as all the other tests I have had...it is obvious to him. Not to mention all three gastros that I have seen agree sort of just puts it out there. To him is seems like I have had IBS in the lower for years, which is true because I was dx with it back before I was pregnant with Josiah who is almost 11 yrs old...what? 11 yrs old? How on earth did that happen!!!?? Oh sorry.... My current symptoms and testing show gastroperesis. YAH!!! umm.....not. He wants me to live (eat) as though I have GP and treat myself as though I do so I can see if it makes a difference.

Also the endo (Feb 2012) and colonoscopy (last week), both showed some things.
Short Barretts Esophogus (precancerous cells)
Polyups (also precancerous) they aren't always ,but mine where. They were also quite large. I had a colonoscopy done 2 years ago and had none.

From this point I will need a repeat of both in 3 years. If nothing worsened then we can push it out 5 years. We will see what happens from here.

My Lyrica was approved faster than I thought so I am on it. Is it helping? I don't know. The doc said to give it a month and see what happens. The pains in my arms are not better. Sleep, I still have to take a Flexeril before I go to bed. I lay down and BOOM my mind starts going and going and going......... Frustrating. I will actually lay in bed totally exhausted and ready to sleep until 4 am!!! Ugh.

So as of right now it is still a waiting game in some respects. In others it is life changing. They don't want me to change things too fast or we won't know what is helping and what isn't. Understandable.

Again, your prayers are always appreciated. Feel free to leave any comments or questions! I will answer as best as I can.

It's a Beautiful day

Everyday is beautiful. At least it should be. Even if the weather is not. The LORD tells us in his word that life is a gift. Yes, it is. Even if my mortal life on this earth is to be filled with pain, GI issues, headaches, and the like it can still be beautiful!

I have 6 beautiful children. I have one amazing hubby who loves me very much. My family is my biggest support group!! My oldest son is only 10 years old and has taken over most of breakfast and lunch cooking. He has been helping a lot with dinner as well. My twins who are 9 years old have started taking over the laundry. Older son and I still load washer and he switches it, but they get it and fold it and hang it all up. Then they have the two little boys help them put it all away. I truly feel blessed!

Physically, I feel lousy, but this is part of my life that I will have to accept and stop commenting on how terrible I feel. I started my Lyrica but honestly I don't feel a difference at all. I even took two pills. So I will see what the doctor wants to do. From what I was reading on the support group for Fibro, Lyrica only works for 50% of people. Also many have had terrible side effects. So hubby is watching me closely to make sure I don't develop them and if I do call the doc right away.

I have heard so much about Fibro not being real. I have also heard some say that a chiropractor, eating better, and exercise will cure it. For some people I am sure that works. For many though it doesn't. You can go back and read through my last post about what Fibro actually does. A person with fibro has an issue with the nerve sensory in their body. They feel too much, so it causes pain. Just simple things like my son poking me to get my attention feels like someone stabbed a knife into my arm. So it is important to remember that every person with fibro is different and needs treatment different than another person with it. It affects each person differently.

What I do know is that my GOD said he will be my guide. He told me that he will supply my need. To many people it may seem crazy to not go searching for a cure or a relief, but honestly that is not what the LORD put me on this earth to do. I can't spend all my time researching for things to help with this. I just can't. Not to mention trying this and trying that is expensive. So for now I am putting myself in the hands of my doctors. This is what my husband and I feel we should do. Yes I have praying and sought the LORD. If he leads me to other ways I will look into them. For now we truly believe that my doctor knows what he is doing and wants to help me live a full life without pain if possible. If that means trying a couple meds to see which fits, I will do it. I have 6 children to tend to, a hubby that needs me, a house that needs me, and a church that needs me. If meds are what it takes to get me to be able to function at a place that is almost normal or at least bearable, then that is what I will do for now.

Please keep praying for me. Keep reading as I post. I will post updates and things I learn along the way. I will also post blessing from God's word that he uses to help and guide me through this journey.

Till He comes,
Robin

At the Rhuemy today

Can I just say God is sooooo good! I am surrounded by such great doctors that have been so very helpful and so caring. Thank you for all your prayers for me as I continue this long road.

So today I went to see the Rhuemy. He remembered me. I handed him my last post from here so he could see everything I am dealing with. He read through some things here and there and then asked questions. I was totally shocked when he questioned me about my GI issues and was almost word for word what I was feeling although he hadn't even read that part of the paper yet. (how do I knw? it was the second page and he hadn't flipped yet.) LOL He said I have A very severe case of Fibromyalgia. At first I was a little put off and shocked to hear that. Then he explained. It was a HUGE eye opener. It made perfect sense. Here is a little explination of it:

Explanation of Fibromyalgia

We understand that Fibromyalgia is caused by a constant contraction of the membranes that surround in the brain and spinal cord.  

Picture this membrane surrounding the brain and the spinal cord. All the nerves coming from the brain and the cord have to pass through this membrane to get to the organs, muscles joints and every other place in the body.

When this membrane is constantly in contraction, the nerves are constantly firing. (Think of what happens when you slightly tap your funny bone).

1 The pain nerves are constantly firing, thus you have pain

2 The sensation nerves are constantly firing, thus sensitivity

3 Muscle nerves are constantly firing, leading to the muscles constantly in contraction

(those tight muscles you feel in the neck and shoulders etc.), leading to lactic acid buildup. This leads to fibrous tissue.

This is why when many of you push yourselves you are in pain for days with a flare-up because you are ripping this tissue.

The sympathetic nervous system is constantly on, thus you’re producing constant adrenalin, and thus sleep is impossible, yet you’re so tired. Excess Adrenalin also interferes with dopamine receptors leading to the “Fibro fog “. This also leads to depression. When the sympathetic is on all the time, the parasympathetic system is off, leading to digestive problems. Food is not totally digested; the bacteria digest the food sitting in the gut leading to methane gas which leads to I.B.S. and Reflux.

This is just about exactly what he told me. Honestly with everything I am going through and feeling it makes perfect sense! BUT...he also said a few other things. He wonders if I am starting Lupus. So he wanted to test more into that one. Many women with Lupus have fibro. It usually starts as just Fibro but then as they get older or sicker it is more obvious they  have Lupus as well. Prayerfully that won't be the case with me. 

He also mentioned something else. He wanted to test me for another thing, can't remember the name. It has to do with anemia and red blood cells being smaller than normal. It is possible as my mom is also extremely anemic and it is a genetic disorder. So that's something we are waiting on. 

He then examined me and definitely said Fibro and IBS. So it is good news to hear most likely not gastropereisis or Lupus. Now Fibro is no walk in the park and will require life changes as well as a new medicine for me. But I have some great doctors that are going to stand by me and help me get better and be able to handle the flare ups. 

He is putting me on Lyrcia, which has some side effects but helps with all the nerve firing issues. Prayerfully m y insurance will cover it so I can get some relief. Now on to research to see what I can do to help myself. So much to learn.

Today's appts and thoughts

Today I go for a colonoscopy and the appointment with the Rhuematologist. The prep for the colonoscopy is not easy on my stomach. My hubby and I were afraid I was going to throw it up. It seemed to take a long time to get cleaned out. Hopefully all will go well.

My doctor suggested I make a list of every ailment I can to show the Rhuemy today. After I made the list I just sat there and stared....really? That much. No not every single day, but 75 % of the time I feel most of those things. On "feel good" days I only expereince some of the problems. So I figured just in case anyone was interested I would list them here, also in case I lose my paper! LOL

Daily headache
Fevers between 99.2 and 100.7 frequently. 5 days out of 7
Pains:

• Base of skull/neck
• shoulders
• elbows
• wrists
• collar bone
• hips
• knees
• feet
• Muscle pains in arms and legs with weakness

Loss of strength in arms, legs, hands, and feet

Cold hands

Insomnia

Exhaustion

Skin on arms feels rough and bumpy

Get pink patchy areas on arms and cheeks after being in sun

Scalp is senstive, can't wear hair up for long periods of time.

Skin is sensetive, don't like to be touched or rubbed often

Eye twitches seem worse

Severe Anemia with no found cause yet

Pains in my hands with numbness and loss of strength

Skin will feel dry and scaley often

Get small bumps or lines of bumps that are itchy and painful

My eyes are irritated frequently. My right eye gets really sore and red. I also noticed they are very dry often.

Can't stand or sit for long periods of time without pain in hips.

Getting up and walking in mornings or after sitting is painful for the first few steps, sometime hour.

Chest pain daily. Right in the center. Deep breaths hurt.

Extremely forgetful often

Dizziness

Ringing in ears often

Carpel Tunnel in wrists

Vision seems to be go strange. Get blurred vision often. Especially when I look up from what I am doing.

Skin around my eyes seems different. little flaps of extra skin, rough, dry, dark

My tongue and throat are often sore. My tongue will swell and get these sores on it, but not like cold sores.

My throat is often swollen and sore, esp on left side.

Now add in the GI issues

Feel full after small amount of food

Nauseous daily

Weight loss

Constipation when it used to be 3 to 4 times a day!

Bloated 24/7

Regurritate often

Hiatal hernia

Major reflux on two fidderent meds for this

Sometimes feel food is stuck in esophagus

Lots of belching

Just an over all loss of appetite

WOW................... Really?! Yes, really. All of this is exactly what I expericne on a day to day basis. Well you don't look as sick as all that. I know. I am a Mom with 6 kids and life that must go on. Somedays are harder than others. Things aren't getting done at home that I want to get done. You will see me limp from time to time, but really who wants to see someone walking around looking like they are feeling all those things listed above. I mean I wouldn't. I seem to be having a good span the past week. I have really bad days, but not all the time. Praise the LORD for that.  Am I dying? No. But this is a life altering sickness that I must learn to deal with. What ever it is.....

Please pray for some answers today.

Thank you!!

Strange week

So this week I ended up with a few spots on my chest that got very itchy and painful. But it wasn't characteristic of shingles or really any other kind of rash. But off to the doc I went due to the pain it was causing. With what I was feeling we decided to go with a 5 day round of prednisone to see IF it did anything. Well by the next day I was not having trouble with the rash, but I was having some nasty and miserable side effects from it. So they took me off. We noticed that with only two days of the prednisone my aches, pains, head ache, and the rash went away. By last night my shoulders, hips, neck, and head pain came back. Also yesterday afternoon I developed what looks to be the butterfly rash across my face. It isn't as bad as some get but it was definetly a red burning or blushing look to my cheeks and across my nose. So that was/is interesting. It isn't so bad today but the skin in that area is still hot and uncomfortable.

I recently prayed this way, if I have Lupus Lord let me get sick enough that we can get this thing diagnosed and then deal with it. So, I think the good Lord is ansering my prayer. I don't want to be sick, but I also want a dx and to be able to go head to head with what ever this is. So Please pray with me. I have an appt on the 30th with the Rhuemy. He will be the one to dx me with an autoimmune disease.

Something is wrong. I am dealing with a large list of issues. It's just finding out what it is so I know how to care for myself. One step I am going to start with is going gluten free. I know it helps many who battle gastroparesis and Lupus or Fibro. So it is one thing I can change. I will most likely switch the whole family back because we think it will be healthier anyway. The amount of tummy aches, constipation, and other issues is awful! So hoping it will help everyone.

So that is an update on me. Thank you for praying!!!!

Talked with Primary Doctor

Well, I had all that blood work done last week. I was right, possibly. My doctor did an ana test and it came back positive. I had one done a couple years ago. It was positive then also. I guess it has to be higher than 1 in 80. Mine was 1 in 160 right now. So, that means it is positive. Now, does that mean I have an autoimmune disorder? Possibly.

Back when I was dx with Fibro I was sent there due to a positive ana. At that time I didn't have too many symptoms, unlike now. So the Rhuematologist said no, not Lupus. But, now here I am two years later with pain, exhaustion, very foggy brain, and many other sysmtpoms that make us all think Lupus. So back to the Rhuematologist I go. They will do more tests. Also I guess they have a criteria form they use. You have to have 4 of the 11 on the list. I looked at the list and I have at least 5 of the 11. So...hmmmmm

Honestly I am not surprised in the least. I knew something was wrong. I knew there was more to what I am feeling and dealing with. Here is a link about Lupus if you are interested.

http://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.cfm

I will be doing some research on the difference between Lupus and Fibro to see if I can come up with anything. Also to see if there is anything about Lupus and Gastroperesis.

Lots to look into!!!

Interesting about IBS

I was reading one of the sites about IBS and found this interesting.
I have every single one of these:

Other Symptoms May Accompany IBS

Persons treated for IBS commonly report upper gastrointestinal (GI) symptoms. About 25% to 50% report...

• Heartburn
• Early feeling of fullness (satiety)
• Nausea
• Abdominal fullness
• Bloating Read More

Other GI symptoms also reported include...

• Intermittent upper abdominal discomfort or pain (dyspepsia)
• Feelings of urgency (the need to find a restroom fast)
• Feeling of "incomplete" bowel emptying

Non-GI symptoms also occur. Sometimes, but not always, this may be due to an overlap of IBS with another condition. These symptoms include...

• Fatigue
• Muscle pain
• Sleep disturbances Read More

Other symptoms tend to occur with more severe IBS such as...

• Low back pain
• Headache

Symptoms sometimes seem contradictory, such as alternating diarrhea and constipation. It may help to keep a Symptom Diary so your doctor can see how your symptoms change over time and in relation to diet, stress, and other factors. 

BUT!! I also have ALL of these as well! 

Symptoms NOT Characteristic of IBS

Symptoms of...

• anemia,
• blood in the stools,
• unexplained weight loss, or
• fever

are not characteristic of IBS. You should alert your physician immediately if you are experiencing these symptoms.

So....hmmm.....thinking.........

Visit to Boston

Wow, I can't believe it was today! God is sooooo good!!

I will try to be as brief as I can. The way that they work things at Beth Isreal is unique. I saw two doctors, basically a specialist and then a special specialist. LOL Dr. Trinidad was the first doctor. He was awesome! We, both hubby and I, really liked him and felt as though I was listened to and well tended too. We also liked the big wig doc too, but we really liked the other!

So, Dr. Trinidad did my exam and took all the notes. So he is the one who really did the appt and the other doc, Dr. Ch..can't remember his name, just came in after and listened to Dr. T say what I said to him and then he gave the final thoughts. So so so so so...what did they say!!!?

Dr. T did this thing during the exam that I felt was strange but made a lot of sense. He put his stethoscope on my stomach and then shook me back and forth. He was listening to see what he could hear in my stomach. He heard a full stomach! But, I hadn't eaten anything but two bites of a donut, 1/4 of a crossaint, and some drinks. There should not have been that amount of food in my stomach. After he shook me like that I became so nauseous and extremely gassy. I mean like belching ridiculously! With all I told him and his exam, he honestly at this point says it is gastroparesis s. Which is what I thought also. Then he said he would like to see these things happen:
Repeat Colonoscopy
Stomach Emptying study
Test for Celiac

Then the other doc came in and he agreed. LOL He also said at first that I have IBS, which is more that what I thought. IBS is an actually motility disorder. It can affect lower or upper or both. He believes that if it isn't GP then I have a very severe case of IBS through my entire system. But, that was before he knew I had NOT had the emtpying study done yet. So......

We changed my meds around a little. Previcid in am, Zantac at night, and then he wanted me to start taking Probiotics....but I already do. So he wanted me to take this one called Align. Well, I remember that a good friend of mine always said that the Pearl ones are the best and I got two more of those for less money and they are the exact same thing! So I got those in stead. They also did another test for Celiac. If the Celiac comes back negative then he wants me to see the Celiac specialist to be tested or at least explore the possibility of Gluten Intollerance. Honestly I am not surprised at all. The other one they wonder is lactose.

So, I got answers!! Dr. T was very concerned about me and my health problems. Both doctors said that no matter what exact one it is I DO have a motility disorder. Also, Dr. T said that sometimes the emptying study isn't helpful for dx GP because I could be having a good day when I go in but then the  next day is a terrible day and nothing goes down well. So we have to pray that when I do go to get it done that I am sick! LOL I know crazy thing to pray for. Dr. T really believes that I have it. Even without the test he was ready to treat me for it!! He didn't like the way  my stomach sounded when he shook me all around. LOL

I am so happy and thankful for God's anwers to give us answers or at least to be leading us in the right direction.

How am I feeling now? Well, I am back to mostly liquids. When I do eat solids it's not a happy thing for me. Oh well. At this time I am going to just go on the assumption that I have GP and look into how to manage it. Please understand that this is a life long thing. There is nothing that can be "done" to correct it. I even contacted a special herbalist/holistic nurse practioner and she told me that there is nothing holistic that can be done. I need to do what my doctor says. So please don't tell me I just need to do x y or z and I can be better. Believe me, we are exploring everything we can to help. I am going to have to  make huge changes to my diet to see if it helps, cutting sugars, dairy, gluten, and caffine. I will battle this for the rest of my time on this earth. WIll I always be as sick as I am now, prayerfullly  not, but if I am I have a great God who has promised to take care of me! I will trust him! I must!! If you have questions, please ask!!

Here are some sites on GP:

http://www.mayoclinic.com/health/gastroparesis/DS00612

http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/

Here are some for IBS

http://www.medicinenet.com/irritable_bowel_syndrome/article.htm

http://www.aboutibs.org/

Hope that helps ya some.

In Christ,
Robin

I was dx with Fibromyalgia in 2010...

I never really looked into it or thought more about it. I didn't think in my wildest dreams that Fibro could be the cause of anything with my gastro. Well, it is possible.

Today I had an appt with my primary care doctor. She is just awesome and I am very thankful for her. We talked about everything I am going through, not just gastro. On here with most of you online I have only shared my gastro stuff. There are many other issues:
Daily headaches
Gastro stuff
Cycles off
Chronic Fatigue
Pain all over my body
Weakness, lsoing strength
"Depression" I hate that word. It is just the word they use for excessive Serotonin
Memory Loss
Memory, Brain, fog
Chest Pains
and more...just tired of listing them....lol


So, my doctor agrees with me that with m y age, the fact that I don't drink, smoke, or eat excessively junky, and I take vitamins regularly that there has to be something that is causing all this. She truly believes that it all comes down to one thing. But, we don't know what that one thing is.....Lupus, Fibro, Thyroid, etc.... So now we are on a quest to rule out all we can and go with what we know. So I did some of my own research tonight and found some very interesting articles about Fibro, which I was dx with back in 2010, and gastro problems. This one really hit the nail on the head and made so much sense
http://nomorefibro.wordpress.com/2011/09/28/the-big-six-gi-problems-a-common-symptom-of-fibromyalgia/
Another idea we are looking into is Lyme's Disease. We don't really think it is that but why not rule it out. If this is all just Fibro then all my tests will continue to show "nothin is wrong." Why? Well, all these things are just symptoms of Fibromyalgia. It is the Fibro that we will have to take care of. Hopefully it is that easy.....

Please pray as we begin some testing to see if we can pin point all this and narrow it down to something. That is her goal!!

Next week I head to Boston to see the doctor there. I am interested to see what he says. So, we shall see what happens.

Lupus...????

After reading a few posts this weekend on a support group I am on,  I had a memory jog. A few years back I had a second trimester loss. They did lots of tests to see if they could figure out why. Anyway, one of those tests showed I had something in my blood that had to do with Lupus. I think it was ana or some like that. So I was sent to a rheum doc. He said no and dx me with fibro. Ok.... fast forward to the last couple of years. Now I am having all these GI issues. So I looked up Lupus tonight....um....  wow!

So many things on there are me. Over the last few years I have developed many different health issues.
- Extreme Anemia is one. They can't find a cause... hmmm
-Fatigue, which we always chopped up to the iron issue. It may be....but could it be Lupus?
-I have always had great skin. Recently it seems so rough and flaky..I can't explain it.
-Headaches all the time. I can't seem to find a reason for them either. It just  happens out of the blue.
-Joint pains....constantly. I always do. That was one issue when I went in. He said since I wasn't "swollen" then most likely not. I tols him I was always puffy in the am and in the evenings.
-A strange thing I noticed and was actually going to mention to my family doc this week...fever. I seem to often have a temp between 99.8 and 100. I mean daily for a bit now. I keep waiting to get really sick and nothing. Seems strange. Then the next day I can take it and it's back to normal range, but then in the evening back to higher...or even the next am. Strange.
-Hands and feet swell daily.

These are just a few of the things I noticed about the list I was reading. Another thing is the depression. So, now something else to  mention to the doctor when I go to Boston. Maybe it wasn't advanced enough at that time to dx me. I just don't know. But to now be having the GI issues I am with "cause." Not to mention my exhaustion. Lots to think on here. Am I now thinking I have Lupus and jumping to conclusions..no. Just something to think on and mention to my doctor.

You have to understand that I am having all these health issues and I am only a 33 (almost) yr old woman. I don't smoke, drink, or eat just junk food. I have been a pretty healthy eater for a long time. We don't do a lot of processed stuff and I make most if not all my meals from scratch. We even ate gluten free for 5 yrs and we ate organic and natural for years as well. (cant afford it now) I also take my vitamins and suppliments. So I look at all that and while I am overweight I am not grossly obese. So I need to lose weight, yes, but it can't be the cause of all my issues. So I am searching. I am being my own advocate. If I don't research and have questions I won't find answers. Also if it is Lupus it would make sense. My mom has RA. So it is possible those genes were passed down in the form of Lupus, yes that is possible. Again, not saying that is it, just wondering.

I have an appt with my primary doc this week and then the Boston doc next week. I talked to my doc this last week about some issues that she felt she wanted to see me about. Some are the issues I listed above and some are other things. I am sure she will be interested in this as well.

Thank you for your prayers. I have actually been able to eat a little more solids. Although I think I have over done it and am now paying for it. I am hurting pretty bad and my stomach burns, but with these issurs you have to take the chance and see how you respond to them. I told hubby tonight "I am done with food. Why do I bother?" But I know I will feel differently tomorrow. LOL

Again, God is good!! HE is always good!!! He will and does sustain me. He will and does give me strength and grace. I am thankful for my salvation and pray that I can love according to his precious Book!!

Hard day

Well, last night I didn't sleep well. I had lots of chest pains, lower back pain, and just insomnia sort of. I couldn't get comfortable and I just felt blech. I just wanted to cry. Today...same.

I need to get blood drawn monday. I am thinking my iron has really plummeted. I am so tired. I mean like can't keep my eyes open after naps tired. I hate it. I feel so useless in my home. If I push  myself to get things done then I am even more exhausted. My brain also seems very foggy. Not sure all of what's going on with me, but I know I feel lousy and I just want to whine! LOL

BUT...you know it....God is good!! He is. How do I know? I am not dead. My husband hasn't left me due to not wanting to deal with an ill wife. I still have a home in heaven and that will never change. I have 6 amazing children!! We have a home, a car and a van, and my hubby has a great job. I have an appt in 2.5 weeks to hopefully get a few more answers....or just wait longer...LOL

Anyway, This is the day that the LORD hath made, I WILL rejoice and be glad in it.....while I take a nap. LOL No I will. God has a reason for me to walk this road. So I will walk, hand in hand with my Jesus I will walk. There will be times he will lift me up into his arms and just carry me, but I will still be walking, just in his strength alone...but isn't that where he wants me anyway? Walking totally trusting and leaning on his strength. Yes I do believe it is.......Like I said....God is good.

I love you my Jesus......

God is good!!!!

Thank you to all who prayed that I could get seen soon!!! I actually was able to get an appt in 3 weeks!!! That's totally unheard of! Seriously, we are going to Boston at Beth Isreal Hospital. That's an extremely busy place!!! God is just soooo good!!!!

Praying I can get this taken care of and find some answers!

Talked to the Doctor...finally

First of all he was very apologetic for making me wait so long. He wanted to call Sunday but just wasn't able too. He has a family also. Then Monday he was literally in surgery and other procedures all day until late. He wanted to call earlier today but wanted to be able to have an hour to chat with me. Made sense to me.

Ok, so the Barium swallow showed what we know.
Hiatal hernia, still small not huge but will need surgery at some point.
Extreme Reflux! Worse than what doc was hoping for.

So what's wrong? Not sure. Is this all just due to reflux. Possible, but he doesn't think that is the only issue. Could it be Gastroparesis, possible, but I don't have an issue with emptying from what we know. GP is when the stomach doesn't empty fast enough so you have to take digestive enzymes to help it work correctly.That is one thing he wants the Boston doctor to look into. Could it be the hiatal hernia? Yes, that mixed with the reflux could be the cause of the pain. If this is the only issue I can get the surgery to help. He wants to make sure though, before doing it. Then the other thing could be the one they can't see...Esophageal Motility Disorder. I have come in contact with a few other ladies that have this and they went through everything I have been through so far and all tests looked normal and yet they still have food stuck. So it is again....a waiting game.

At this point none of the tests showed any issue for food to get stuck anywhere. But..he believes me! LOL He truly sees that there is an issue and wants a second opinion from a doctor in Boston.  He wants to do the surgery but he is afraid right now that it will make my esophageal issues worse. For some reason he has a pretty healthy 32 yr old who can't eat. That doesn't sit well with him. What exactly does that mean "Can't eat?"
When I eat solids except for crackers or something easily crushable
-I get full VERY fast
-After a couple bites, literally a couple, I feel it sitting in my chest and I start getting pain through my chest
- I regurgitate often, even with crackers and such.
- I literally hurt from mid chest down through my stomach
- I have lost 20 lbs so far, in just 1 month

For now he wants me to remain mostly on liquids and have those all through the day. So no three meals a day for me. I must eat a little here and there all day long. No raw veggies. Anything that could cause acid is a NO NO. As for solids, try some here and there although he wants me to stay away from what I know bothers me. I can not handle meat, even if it is chopped real little. I can do some shredded meats that are over cooked in soups. Like the chicken in cream of chicken. He wants me to try another medicine to see if it will help the reflux. If it works then he will get me a script for it. If not then he will bug my insurance company himself and get me the medicine I need. So that's a good thing.

So I wanted to know what the difference is between him and one of the Boston doctors. I guess the difference is that he sees patients for small issues. The Boston guys see problem patients. They see things like this often. I may get down there and they see the test results and look at me and they say "Yep, seen this before. This is......"

Another thought we had had was maybe it is a Gluten Intolerance. BUT...that just doesn't make sense. He does wonder if that may be part of my problem as far as the Iron deficiency is concerned. That may be an avenue to explore later.

I do ask for your prayers as I am exhausted. Obviously I am not getting the nutrition I need. Yes I am a big lady and need to lose some weight but not eating is NOT the way to do this. My iron is very low and I can't take my vitamins so that is really causing me issues. Prayerfully I can get the money together to order some liquid vitamins.  Also prayers that we either find the answer or ...well....that the LORD will just give us and the doctors wisdom. Oh, and my doctor put in a special order to the docs in Boston that this is a rush need. I need to be seen ASAP! Usually you end up on a 2 to 3 month waiting list. He personally wrote a letter to the doctor he wants me to see explaining my issues and that he wants me to be taken care of quickly. He also explained that I am a very busy momma with 6 kiddos. That was a plus! LOL

Sorry so long, but I wanted to try to answer all the questions I could think of. If you want to know anything else, please ask!

Thank you sooooooo much for your prayers!!

Barium Swallow

Well, I am back from the swallow test. The radiologist actually does the test. So he can say things as he does it. That was nice. He asked me when I was told I had a small hiatal hernia, a long time ago? Um, no onlly back in Feb.
Doc: "Hmmm, interesting. Very interesting."
Me: "really, why is that?"
Doc: "Let's just say you are showing what you are feeling."

Ok, so I am now very anxious to see what my doctor has to say. I am to call them on Friday afternoon and find out what to do from here.

Prayers!!!! Thanks!!

Gi Appt update

Can you say um....frustration? So the GI doctor said that the motility test was normal and that the nurses who did the test shouldn't have said anything other than your doctor will let you  know the results. They both said it looked as though I had no movement in my esophagus. But I guess I did. He did say that one swallow out of the 10 was abnormal but that doesn't mean anything.

So tomorrow I go for a Barium Swallow. I guess it is a procedure that I have to drink this nasty chalk stuff and they take x-rays over and over in different positions. So if that test is normal then it is on to a Ph test on Monday. It measures how much and what kind of reflux I have in my stomach and esophagus.

I keep trying to tell myself I am not imagining this that something is wrong and I need to get it figured out. That it isn't just going to go away over night. I don't know. I just feel so down about all this. It's hard not knowing and staying in limbo.

Doc wants me to only eat very lightly which is fine because I am not "eating" at all. I have soup and shakes but that's about it. I can have some crackers at times too. If all these tests show nothing is wrong it's off to Boston. The doctor definetly believes me that something is wrong. He said he has had three patients this year  with the same issues I am having. One of them ended up with motility disorder and the other is in Boston still not sure what is wrong.

I joined a support group when I first had the motility test done. From what I understand many folks have these same issues and never get an actual diagnosis. They just go on living with issues and sickness and the docs can't find anything. Although the docs know something is wrong they can't find a concrete problem which means there is no concrete solution.

Well on the positive note I have lost almost 20 lbs. For a fat lady like me that is awesome! LOL I am able to fit into sizes I haven't in years. Not that this is a good way to lose weight, but I am happy for the weight loss. I hope I can continue to lose weight healthily though.

So....even though I don't know what is wrong I know God is good!! I know that he is in control and he will do what he needs to do to make this all work out according to his will and so he is glorified!!

Frustrated!

So my pcp finally gets NExium approved for me for my reflux. So I go to pick it up today. They only approved 2 weeks at one a day! I take 2 a day. Also the cost is $45 for a two week supply!!!! YIKES! Now back to the drawing board. Ugh!

Oh well, I have to believe that God is in control and will take care of this!!!

Not sure what to title this......

It is Monday. Yep. I woke this morning feeling extremely tired, weak, nauseous, and all around just dragging. I tried to drink my ensure but I couldn't stomach it. I also took my meds and they didn't go down to well. I kept burping them back up. I have also noticed the belching has increased.

I have been sticking mainly to liquids
Morning Shakes
Lunch is usually a creamy soup
A nother shake in afternoon
Soup again in evening

I am not eating much that's for sure. I know I need more calories, but I can't physically get that many into my body in a day. I have a coffee cup size soup serving and feel like I have eaten way too much. It keeps me full until I force myself to drink a shake or have more soup. Noticing my stomach isn't happy either.

Yesterday I chopped up meat really really small and mixed it in with soup and it was still too much. I ended up having to throw up, which I found very difficult. To throw up from my stomach is easy, but trying to get it back out of a dysfunctional esophagus...not easy! That was ereally hard.

Burping has become a HUGE issue for me. Every time I put something in I get bloated and have lots of burping. This is not fun.

Tomorrow is my appointment with the GI doc. I am anxious to see him and see what he says. I truly hope and pray he has some answers for me!! I know I am looking at lots more tests, but hopefully we will find out something tomorrow.

Your prayers are appreciated! Thanks!!

It hit...

I miss food!!! I mean food, not goodies and treats. But instead of drowning in my sorrow of missing food I am going to remind myself of this Phillipians 4:13 " I CAN do ALL things through Christ which strengtheneth me!!!! Have to keep reminding myself of that.

I also have really struggling tonight with trusting God. Not in the way o ne might think due to my issues. Trusting that he will provide the money or the foods that I need. I have got to trust that he will truly supply ALL my need!!!

I am also struggling with not knowing or hearing from my GI. I keep questioning myself....maybe this is in my head. Maybe this is just psychosomatic or maybe I am abstaining from solids when I don't have too. Maybe some solids here and there are good for me still. I will just wash them down with a huge amount of water. I am in denial I guess to some degree. Do I really have an issue? My husband said this to me tonight, after he had heard me belching constantly "Ok, something has to be wrong. I have never heard you burp like this ALL the time!" We've been married 12 years. Also when I do attempt to eat something not liquidy enough...I regurgitate it. I am so looking forward to hearing from my doctor on Tuesday. Seems like foerever.

So...I am not doing well emotionally tonight. Maybe I am just tired. I also feel blech like usual. I want to go to sleep but my soup hasn't settled yet and I am afraid I will regurgitate it in my sleep. That isn't good either. So I sit awake.

BUT...God is good because he is GOD. God is good because he saved my soul. God is good because I have a family who loves me dearly. God is good because my 10 yr old son is such a sweet boy and loves his momma so much. He was in tears tonight because of what I am going through. He knows how hard this is for me. God is good because he gave me inlaws that help supply the children's needs. All 6 kids got new shoes and a new summer outfit today! God is good because my husband is so wonderful!! I kn ow this is hard and I have been hard to deal with at times, but he is so loving and compassionate! God is just soo good!!!!!!

YAY!! Got my new blender!

So I looked on craig's list and got myself a neat little personal drink blender. It will work for now to get me started. I know that I will eventually need to move on toa bigger one. I want one of those Ninjas or a Vitamix.....dream............oh sorry...blogging, not dreaming! LOL

So, how am I feeling? Hmmmm BLECH. LOL Tis life at this moment in time. No solid foods since the chicken incident!! Still wow.... I am definitely not getting in 2000 calories. WHen I actually find out from the doctor what I have then I can go from there. I want to see a motility specialist in Boston and see a nutrionist. That way I can see what I need to have as far as an intake is concerned.

I did find a yummy lunch/dinner though. I got myself some of the cream of _____ soups and mixed with milk and broth and then added some seasonging. I love creamy soup so this is nice. Although I know it will get boring. LOL I have been looking up recipes for different creamy soups and things that will hopefully give me a variety. Still learning.

Oh, I did make one big mistake tonight. Now I am not a gum chewer, just don't like it that often. I got the kiddos some Bazooka gum and had one. I made sure to spit it and not swallow it. Well then me and my absent minded brain chewed a second piece and then swallowed it....oh that was painful! After a few hours I think it is down....not sure. My chest still hurts a bit, but I downs a HUGE bottle of water and a cup of coffee. I felt sick like I was going to vomit at any moment, but at least I felt like I was pushing it down....hopefully.

One thing I am not liking is all this burping! It is just down right embarassing. Sitting in church Weds night I needed to burp a good loud one to get some air out....but I couldn't. So I kept just holding it back and letting small ones under my breath. Oh that hurt. Grabbed myself a small coke and drank a few drinks and got a good clearing out. LOL I find that soda helps me burp and helps me feel slightly better at different times. Strange. Not always but sometimes. I can't drink a lot, just a few small drinks.

Oh this thing is strange.....But....................................

GOD is still good!!!!!!!!! I am still blessed!!!!

Heard from GI office

Well, I called them. I was able to talk to his personal nurse. I told her exactly what is going on and that I am wanting to hear from him asap! PLEASE!! I found out the "wait." He goes to the endo unit on Fridays and Mondays. That's why he isn't in the office then. So he didn't get my results from the nurses on Monday that means he won't get to until Friday this week. So I have an appt next Tues at 2:45pm. Prayerfully we will get answers and be able to ask all the questions hubby has come up with.

I told the nurse exactly what happened last night with trying to eat and that I was still belching and regurritating some it of this am. She wasn't very happy about that! She is going to push the doctor to get over to the hospital sooner than friday. Pray she can! She is also going to call the endo unit and talk to the nurses that did my test and hear from them exactly what they saw. That way she can have ammo with the doctor to put a move on this. She said it was a critical result, meaning not good! I need immediate care and I am not getting it. So at least now the GI nurse is pushing for me too.

So prayerfully we will get answers soon than Tuesday but if not at least we know Tues!!

Morning and still feel it...

Well I have come to the conclusion I can NOT eat solid foods!! This is what I feel right now..

Symptoms of esophageal dysphagia include the following:

• Pressure sensation in your mid-chest area

• Sensation of food stuck in your throat or chest

• Chest pain

• Pain with swallowing

• Chronic heartburn

• Belching

• Sore throat

My chest hurts this am, right smack dab in the middle, between the well, ya get the idea. I just took my meds because I need to and I can feel them in there also. Now what? Ugh! Trying to give my GI doc until the afternoon, but this hurts. I am not sure what to do. Trying some hot coffee. It has helped before.  Lots of belching and lots of regurgitating. Boy this is fun!! LOL

I also tried to drink some of an ensure this am, not happening.

Please don't take this as complaining. As I stated in the beginning I am using this as a place to jot down all that happens so I can remember and so I can show the doc. I can easily print this up.

Bad idea!!

Well, I wanted to make sure this wasn't all in my head.....so I ate a 1/4 of piece of chicken thigh and spoonful or so of mac n cheese. I chewed and chewed and chewed and then swallowed. Now I am a big lady, like 200+ pounds who would normally eat about 1/2 cup of mac n cheese, 2 pieces of chicken, slice of bread, and some veggies or a salad. I am now stuffed up to my throat, you know that feeling when you ate toooooo much food, but my stomach is still feeling hunger. That means food hasn't gone down. I have a major case of hiccups and feel food at the back of my throat. Also lots of burps. This was just after less food than my 1 yr old eats!!!! UGH!!

Talked with PCP

I just talked to my pcp's nurse. They are just as concerned as us. She looked into the doctor's notes from my GI doc. He should be going to look at results today. Praying!! She said she is going to go in a back door at the hospital and see if she can get answers for me. The fact that I can't eat solids is a big deal to her. Also the fact that I can't take my meds without lots of trouble. Praying for answers today!!!!

Something interesting

A friend just posted the verse Phillipians 4:13 for me under a comment. I got to thinking! You know what is very interesting, that verse is used in so many things for so many things in our lives. That verse taken in context is all about food and eating!!

Php 4:10  But I rejoiced in the Lord greatly, that now at the last your care of me hath flourished again; wherein ye were also careful, but ye lacked opportunity. 

Php 4:11  Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content. 

Php 4:12  I know both how to be abased, and I know how to abound: every where and in all things I am instructed both to be full and to be hungry, both to abound and to suffer need. 

Php 4:13  I can do all things through Christ which strengtheneth me. 

See, that verse comes after Paul talks about having lots and having little to eat. He learned how to be hungry and how to be full. I have always used Phill 4 in my life in many things but now I have a new thing to use it for!!! Amen!! God's book is alive and useable for everyday!!!

Wow...and update

Thank you to all who have read and prayed for me!! Thanks soo much!!!

Yesterday I went out and got some slimfast shakes, ensure, yogurt, and some drinkable yogurts. I was able to have a yogurt drink and a slimfast shake yesterday. I felt like I had eaten a huge thanksgiving meal. Ugh! I will have to remember to be careful and sip rather than drink it down fast. Also have to remember not to drink my meals after 6 pm. I felt like it was still with me this am, not a fun feeling.

I am still waiting to hear from both my PCP and my GI doctor. I am praying to hear something from at least the PCP today. I am hoping to get a prescription written for ensure. That stuff is expensive!!!!

I refuse to not have a joyful spirit though. Yes this is hard and yes it just down right stinks!! BUT, I have a great God!! I have a home in heaven! I have a beautiful and wonderful family! I also have one amazing church and awesome Pastor!! So I will praise HIM and I will find reasons to be joyful!!! God is good!!!!

Lots to say.....

Well, I have not had a confirmed diagnosis but from the tests I have had, my symptoms, and talking to other folks who have this...well I am 99.99999999% sure this is my problem. Now this is a very broad group of disorders. What we think I have is Ineffective Esophageal Motility Disorder. This is something that is incurable. I mean there is nothing at all they can do to fix the problem. Now there are things to do to help manage the symptoms, these I have to learn. For right now I am on a complete liquid diet. Yes you read right. LIQUID ONLY! I can't have solid food. It stays in my esophagus for too long and takes lots of fliud to actually wash it down. Even just two crackers chewed and chewed and chewed will take hours to go down.

So....how did I find all this out? Well tummy issues have always been in my life. I just never really thought it was anything bad. They always said IBS. So we left it at that and went on with life. Then last fall I started having major indigestion. Then I ended up with major pain at the connection between my esophagus and stomach. So to the doctor I went. She said I had esophagitis most likely from reflux. So off to the GI I went. WIth these two appts started my road of trying different reflux meds and a scope up one way and down the other. The GI discovered I had a very small spot of Barrett's Syndrome, a small hiatal hernia, and a very raw stomach and esophagus from acid. So they put me on a new reflux med. I seemed to be ok for a bit. Then I got a stomach bug. Boy did that hurt!! After that bug things went from ok to really bad! So back to the doctor I went. They changed my meds again, this time I went on protonics. Didn't work...well, I wonder if it worked for the acid but the chest pain was the issue.

Now hind sight is better than fore sight. During this time I was noticing my chest hurt a lot. I also was using my inhaler because I assumed it was my asthma.  Then I noticed it was when I ate and it was getting worse. I then payed closer attention to it. I ended up noticing that my chest felt full of food but my stomach still felt empty. Strange. Still didn't really think anything of it. Then it got really bad. My chest was hurting really really bad. I felt like I just couldn't eat. So back to the doc and the GI doc again. They sent me to get a Motility test and my pcp put me on Nexium.

The Motility test results haven't been read by the doctor yet, but from what the nurses said during the test and what I could see on the screen....it didn't look good. The nurses said I had a large hiatal hernia, doc had said it was small at the time he did scope. They also said there was NO movement of my esophagus at all. The fliud they had me drinking just stayed there. It didn't go down at all!! I was watching the screen...it seriously just stayed there! No muscle contractions..nothing. Um...that's not a good thing.

So that was last week. I am waiting very impatiently for the doctor to read the results and talk to the nurses who did the test. From there we will know more. I have been able to get in contact with some other people who suffer from this. They h ave been helpful to say the least!! I found out that the best Motility Specialists in the USA are in Boston, ya know 30 mins from me!!! So hubby is currently writing down questions and comments we have for the GI when we go see him, hopefully end of the week. We need to learn all we can.

So that is me in a nutshell right now. If you h ave any questions please ask and I will try to answer!! We are new to this as well.

Robin