Hanging In There

Today's blog title reflects my current status. People have been so kind asking how I am feeling and the best I can give is "hanging in there" at this point.

I do have good news to report! The new food is working great! I have not had any issues so far. This is a major accomplishment and praise! I do not have it at the higher rate that I was at before all this happened, but it is working great.

I have lost 13 pounds of fluid that I brought home with me in my legs from the hospital too! Thank goodness, because that was very painful!

I have been calling organizations to donate the food that I have but cannot use, with no luck. Once again, if any of you know of an organization that could use this, please let me know.

I resumed my IV Iron treatments yesterday. My doctor feels that I now need a total of 8 treatments rather than 4. She took some blood and I got the results today. My liver enzymes were elevated and my potassium is high. Having that be high is very unusual for me. While I was in the hospital, it was constantly low and they had to give me medication to raise it. I go back to the doctor on Friday to have the blood drawn again.

Last night we had a scare. My J-tube (the tube that I use for my tube feeds and for some of my medications) fell out! So at 10:15 p.m., Hugh and I were on our way to Miami Valley Hospital Emergency!

They were able to put it back in on a temporary basis. But the tube needs to be replaced very soon. I am going to see if my local GI doctor (Dr. Wilson) has this type of tube or if I need to wait until I go back to IU on February 15.

I continue to deal with the nausea and the fatigue. I am hopeful that will eventually take care of itself once I continue to get more nutrition.

In my quiet time, I was reading in Revelations 21:1-4. In that is says that "God will wipe away every tear from their eyes." I admit that I have had many tears over the last month. Mostly due to frustration with the medical community in this area. It is a relief to me that He wipes my tears and bottles them away. He is such a sweet comfort to me.

Heaven's delights will far outweigh earth's difficulties.


Until next time......

Rough Week - still no answers

Once again, I apologize for not keeping up with my posts. This has been a very trying week for me.

When we last left off, I was going to see Dr. Wilson, my local GI doctor, to discuss the problems I am having with my tube feedings. That appointment was this past Tuesday.

My mother drove me to the appointment and my husband, Hugh, met us there. Hugh went in the room with me and my mom waited in the waiting room. The nurse came in and took my blood pressure and took my weight. My blood pressure was very low and I had lost 11 pounds since the last time I was there. That was on December 17th.

When Dr. Wilson came in, we explained the problems I had with the new food Dr. Wittles had put me on (the Nutren) and how I went back to the Jevity 1.5, only to continue to have problems. He decided the only way to start was to get some blood work and to get some "samples". I'm not going to go into the "sample" thing. Just to say that the samples will be able to see if there is any type of infection.

There is a term for the problem I am having. It is called "dumping syndrome". Many people with GP have this problem.

Fortunately, Dr. Wilson's office has a Compunet location in their office, so I went straight there to have my blood drawn and to get the supplies I needed for the sample collections I needed to take over the next 3 days.

The Compunet Technician had a difficult time getting my blood because I was so dehydrated. She explained how to get the collections and gave me my supplies. As I went to leave the lab, I passed out. The nurses came to get me and put me in a wheelchair. They got Hugh and put me in a room until they could ask Dr. Wilson what he wanted me to do.

We were instructed to go to Miami Valley Hospital South to get fluids since I was so dehydrated. So we went straight there and did just that. I got home about 8:30 that evening and felt much better since I gotten the fluids.

I contacted Shannon Robinson at Indiana University to make sure she and Dr. Wittles knew everything that was going on. She instructed me to stop the tube feeds completely once I completed the collections. Then try using Pedialyte or Gatorade in place of the food through the J-tube. This is to make sure I am keeping hydrated since I am not able to do this by drinking enough by mouth throughout the day. I am to do this for 48 hours. Then try to use the food again. However, if I have problems, stop immediately.

I have completed the collections and submitted them to the lab. I am using the Pedialyte through the J-tube now. I'm not having any problems using that at all. I will try resuming the nutrition on Sunday night.

I do not see Dr. Wilson until January 18th. Hopefully he will have some answers for me. I did ask him if I am not able to do my tube feeds through my small bowel, how will I get my nutrition? He said I would have to do it by TPN through a PIC Line. I have had this before when I was in the hospital for 9 days last year. That comes with it's own complications. I really hope it does not come to that.

Again, I continue to be encouraged by your thoughts, comments and prayers. They mean so very much.

Here is the verse that inspired me today. It is actually Psalm 121....

I look up to the mountains
does my help come from there?
My help comes from the Lord,
who made heaven and earth!

He will not let you stumble;
the one who watches over you will not slumber.
Indeed, he who watches over Israel
never slumbers or sleeps.

The Lord himself watches over you!
The Lord stands beside you as your protective shade.
The sun will not harm you by day,
nor the moon at night.

The Lord keeps you from all harm
and watches over your life.
The Lord keeps watch over you as you come and go,
both now and forever.


I know that God is in control of this situation, no matter what is happening. I have to keep telling myself that. I believe that with all my heart!

Another Bump in the Road it seems.......

Well, it appears as if I may have another big pot hole in this battle of Chronic Illness.  I will find out for sure tomorrow what may be done about it.  

I am back on the old food (Jevity).  But the problem I have been having (without giving too much of the personal details) is not going away.  It is now causing me to not allow me to fully complete my tube feeds (i.e. my nutrition).  This has been going on for a little over 2 weeks now.  I weighed this morning and I am now down almost 10 lbs. since this started.  This is not good.  My blood pressure is very low and I can really feel it, so we are using the feeding bags for water to keep me hydrated.  Funny, running water into my small bowel does not bother me at all.  Go figure.

So I made an emergency appointment with my GI doctor here for tomorrow morning.  I'm not sure what is going to happen, but I will keep you posted.  

Just another day in the life of a Chronic Illness......

Also, I wanted to put the word out that I have 4 cases of Nutren 2.0 formula that I cannot use.  The Health Care Agency cannot take it back once it has been in my home.  I would love to donate it to anyone who may be on Enteral Tube Feedings or knows of someone who requires this type of nutrition.  If you know of anyone or an organization, please contact me as soon as possible.

Again, I cannot thank you enough for you thoughts and prayers.  They continue to mean so much to me.

A time of Reflection

I hope all of you had a wonderful Christmas and are looking forward to a brand new year!  I know I am!  Although this year has had its challenges, I do have many things to be thankful for.

First of all I have a the MOST amazing husband who has stood by my side these past 10 years.  He has been so amazing during this difficult season of our lives.  I could not do this without him.  I mean it when I say that I love him more today than I did 10 years ago.

Secondly, I am so very blessed to have my parents still with me.  So many of my friends do not have their parents anymore, so I know how fortunate I am.  I do not take this for granted.  I love them with all my heart.  They are always there for me no matter what.  It just proves, not matter how old you are, you are never too old to need your mom and dad!

I am also so very fortunate to have some of the best friends a girl could ask for!  These women have cried with me, laughed with me, cleaned my house, sat by my bedside, held my hand, cooked meals for my family,  driven me to the doctor, done my shopping, prayed with me and for me, they have done it all!  Melanie, Anne, Kelly, Kelly, Kelly, Cheryl, Mindy, Amy, Carolyn, Sarah, Lynda, Jo, Sylvia, Pam, Cindy,  Renee, Tonia, Cristi, and many, many more!  I love you all so very much!

I am also so grateful for my medical team both in Dayton and at Indiana.  While I am very frustrated that my illness is not better, I am glad that I have a team that at least understands me.

During my quiet time yesterday, I opened up to Psalm 96 and I thought I would share it with everyone.

Sing a new song to the Lord!

      Let the whole earth sing to the Lord!

 Sing to the Lord; praise his name.

      Each day proclaim the good news that he saves.

Publish his glorious deeds among the nations.

      Tell everyone about the amazing things he does.

Great is the Lord! He is most worthy of praise!

      He is to be feared above all gods.

The gods of other nations are mere idols,

      but the Lord made the heavens!

Honor and majesty surround him;

      strength and beauty fill his sanctuary.

 O nations of the world, recognize the Lord;

      recognize that the Lord is glorious and strong.

 Give to the Lord the glory he deserves!

      Bring your offering and come into his courts.

 Worship the Lord in all his holy splendor.

      Let all the earth tremble before him.

 Tell all the nations, “The Lord reigns!”

      The world stands firm and cannot be shaken.

      He will judge all peoples fairly.

 Let the heavens be glad, and the earth rejoice!

      Let the sea and everything in it shout his praise!

 Let the fields and their crops burst out with joy!

      Let the trees of the forest rustle with praise

 before the Lord, for he is coming!

      He is coming to judge the earth.

 He will judge the world with justice,

      and the nations with his truth.   

Finally, Hugh and I got the pleasure of meeting our daughter, Chelsea's, boyfriend over the Christmas holiday.  His name is Corey.  He is in the Marines and is currently stationed in North Carolina.  However, he will be deploying to Afghanistan in August.  


We have also learned that Chelsea and Corey are expecting our first grandchild in August.  We ask that you keep them in your prayers.  

 Chelsea and Corey

Hugh, Ben, Mom, Me, Dad

Strange but true!

Sorry it has been a while since my last post, but trying to get ready for Christmas and not feeling well at same time, leaves little room for anything else.

First off, let me explain the title of today's post - Strange but True.  I saw my local GI doctor, to see if he could reduce the balloon in my J-tube at Dr. Wittles recommendation from last week's visit to IU. You may recall from my Endoscope procedure, they reduced the balloon from 20 cc's to 15 cc's.  However, Dr. Wittles said it could go down to 10 cc's.

So Dr. Wilson used a syringe to pull out some of the fluid.  However, it turns out there was only 3 cc's in the balloon!  So the question of the day was, where did the other 12 cc's of fluid go?  Fortunately, it is only saline so it will not hurt me, but we now have to figure out what is causing to the fluid to leak.  Ugh!!!

I received the new food that Dr. Wittles ordered for me.  I wish I could say that it has helped the problems I have been having.  Unfortunately, I has made things worse for me so far.  I called a wonderful organization, The Oley Foundation, to get help and they gave me some tips to try.  The Oley Foundation is a resource for people who are on tube feedings.  The person I actually talked with is a volunteer for the Foundation.  It was a wonderful man named Samuel who also has Gastroparesis.

I have been referred to a Nutritionist at Miami Valley Hospital to help me with these type of issues in the future.  Until then, I'm on my own.

I will begin getting IV Iron next week for 4 weeks to get my Iron back up.  My iron has been continuously low for months now and this could certainly be contributing to my fatigue.  Obviously because of my digestive issues, I am unable to take iron supplements.  But my doctors feel that taking Iron over an IV will be just fine.  It will take about 30 minutes during each infusion.  Not a big deal.

I did receive the pain injections in my back this past Monday.  I received 6 injections total and will go back next week for 6 more.  I believe they are working.  This is a good thing because it will get me off the pain medication.

As I mentioned at the start of this blog, I have also been trying to get ready to celebrate our Saviors birth.  Usually, I have two tree's - one real and one fake.  But this year we just ran out of time.  So we are using the little real one as our tree this year.  We did not put out nearly all our decorations, but it's ok.

I also made some yummy GP friendly Biscotti!  It was very good and tasted great dipping in a warm cup of tea.

I wish you all a very Merry Christmas.  I will be back soon, with more news to share!

Recent Trip to IU and Other Updates

Hello G-Peeps!  

I have to start off this blog by expressing my sincere gratitude for all the prayers from everyone this past week.  It has been a challenging week and you all remind me that I have the best friends and family that a person could have.  

The appointment with my Hematologist, Dr. Jain, was positive.  My white blood counts were normal!  However, my Iron is still low.  So we may be looking at giving me Iron by IV since I am unable to take orally.    I will see her again in 4 months. 

The appointment with new Pain Specialist, Dr. Buenaventura, was amazing!  He concluded that I actually have several bulging discs in my back, as well as, arthritis.  How do you get this from have a sedentary job for 18 years???  Weird!  He gave me a prescription for pain patches and I am having injections done on Tuesday for my back.  This should really help alleviate the need for pain medication!  He also recommended Physical Therapy.  Given that I have basically in a bed for the last 6 months, I am actually looking forward to this as well.

My recent trip to IU Hospital was very productive.  My wonderful husband, Hugh drove me to Indiana and I stayed at the University Place Hotel; which is connected to the Hospital by a sky walk.  He had to drive back after my appointment with Dr. Wittles because he had a Christmas Party on Wednesday.  My parents drove over on Wednesday morning to attend the appointment with Dr. Ykinney and bring me home.

Dr. Wittles decided to change my food formula from the Jevity to a new formula that is more concentrated. I am having some issues (that I won't go into) and he hopes that this will help correct them.  He also recommends that I get a local nutritionist.  I did have a nutritionist, but she moved to The Cleveland Clinic. Anyone know of one in the Dayton area?  

We discussed the problem I am having with feeling dehydrated and the possible need for the PICC line.  He feels that it would be better for me to flush water in my J-tube around 25 times a day rather than dealing with a PICC at this point.  Doing that would give me an additional liter of fluids.  Putting it directly in my J-tube would mean it would go directly in my small bowel and it would be absorbed better.  

I told him that I am still experiencing pain in my J-tube and he said that perhaps the balloon is still inflated too much.  I am meeting with my local GI Doctor tomorrow to see if I should get it deflated to 10 cc's instead of 15 cc's.

We did discuss the Gastric-Stimulator at the end of the appointment.  He still feels that I am a candidate for the device.  However, I told him that I am not a fan at this point but we will discuss it when I return in February.

I took Dr. Wittles by surprise when I asked if I could take his picture with me.  He was a little confused as to why I wanted it until I explained why.  Dr. Wittles is a very soft spoken Doctor but don't let that fool you. I have found that this man clearly knows about this disease.  I feel so very blessed to have found this Doctor and am thankful that he has taken me on as his patient.    Here is the picture of me and Dr. Wittles.

This next picture is of his Physician Assistant, Shannon.  Shannon is an Angel!  She coordinates my care at IU.  She calls me monthly to check on me and has really became a friend.  I appreciate her so very much.  She works her tail off for her patients and she cares so very much for each and every one!

On Wednesday, I had an appointment with the ENT Specialist, Dr. Ykinney.  This appointment was to review the tests I had done at The Cleveland Clinic last year.  The performed a hearing test on me and determined that I have mild hearing loss!!  My goodness, how old am I again???  The Dr. said that there was nothing really to worry about regarding the tests from Cleveland and sent me on my way.  

So, I will begin my new food next week and hopefully that will help with the issues I am having and help to get increased fluids.  

The other day, I found the perfect thing for my week in my Daily Devotional (from My Daily Bread).  Paul wrote "In everything give thanks" (1 Thess 5:18).    While we may not be thankful for everything that comes our way, we still should give thanks in everything.  It may be difficult to be thankful when we loose a job, our health fails, or our children do bad things, but we can be thankful for the good that God has brought to us in this life and grateful for the life to come.

As endless as God’s blessings are,
So should my praises be
For all His daily goodness
That flow unceasingly! —Adams

Instead of being preoccupied with our problems,
let’s praise the Lord for His blessings.

Wow, it has been a long time....

I apologize to all my G-Peeps for being away for so long.  Things have been a bit crazy for me as of late.  It has not all been bad - which is a good thing!

I have had many doctor appointments and have many more to come.  Most have been check-ups.  I am happy to report that my J-tube has been feeling much better since they reduced the size of the balloon.  There is still some pain, but not anything like before!  This is a huge praise and I am so very grateful for all the prayers from everyone.

Next week I am to see my Oncologist, Dr. Jain.  I have an Oncologist because for some reason my white blood counts have been fluctuating over the last year or so.  Last year I had a bone marrow biopsy to rule out anything cancerous.  I continue to see her every six months just to make sure everything looks ok.

I am excited to see a new Pain Doctor on Monday.  As I have mentioned, I also suffer from Fibromyalgia.  With the winter months upon us, my Fibromyalgia really takes its toll on my body.  I have seen a Pain Specialist before and not been very happy with the results.  But this Doctor comes very highly recommended and seems to have very good reviews.

I found the perfect quote from James Robinson's Twitter:

"When we look inward we allow our chronic pain to define us. When we look outward we allow God to define us" -Shane Stanford


I thought that was just Awesome!


On Tuesday, I am going back to Indiana to see my GP specialist, Dr. Wittles.  I am looking forward to this appointment because I have many things to discuss with him.  Although, I am afraid he is going to want to discuss the possibility of me getting the Gastric Stimulator.  


The Gastric Stimulator is similar to a pacemaker, but it is in the stomach.  It does not cure GP, it only helps with the nausea.  When I was being treated at The Cleveland Clinic, I was told that I was not a candidate for this procedure.  However, Dr. Wittles feels that I could be.  I'm not so sure.  


I am fine living with the feeding tubes if I could just get stable enough and keep hydrated.  I am considering the possibility of getting another PIC line put in for hydration like I had last year.  At this point, that seems to be my only problem.


I am also supposed to see a Ear, Nose and Throat Specialist while in Indiana.  This is to review some tests I had done last year at The Cleveland Clinic.  These tests were neurology type of tests that came back "highly abnormal".  I believe I have some sort of a "vertigo" problem.   


There is some belief that if you have migraines and inner ear issues, it could contribute to GP.  


Enough of that...


I have been feeling well enough to do some Christmas decorating and shopping, which has been fun.  I have even made some GP friendly cookies, thanks to the GP Cookbook! 


I will continue to keep you posted on how things go next week.


Thank you all for following this blog.  I appreciate your comments and emails and mostly your prayers.