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