JMC Vlog Episode 37: Colonoscopies, Endoscopies, Dermatologists, and MRI's

haven't done a vlog in 6 months because of my health continuing to deteriorate. Warning there is no good news about my continued fight with Crohn's. But the good news is God's grace is sufficient and my faith is stronger than ever before and I thank God that one day my suffering on earth will be over and will go home to heaven.

A Poem Sent To Me About How Crohn's Disease Makes My Friends and Family Feel

Today I received the below poem from my Facebook Friend Virginia who is from Colorado.  The poem was originally posted by another of my facebook friend Sabine who lives in Ireland and through these 2 women I was blessed to read just how much my disease affects my friends and family.  This poem truly puts into words what it is like to watch someone you love fight and suffer from an incurable disease.  

My friend Virginia is fighting Leukemia and at times what she and I go through with our diseases is very similar as to what the diseases do to our bodies. I have never met Virginia face to face, but we are always there for each other when we are having a bad day and need to vent and write someone.  She has had a very hard time of watching and reading what I have been going through, because there are more treatments out there for cancer than there are Crohn's disease.  And Cancer gets alot more attention than Crohn's because there are more people who have it.  I am just one of 700,000 people in the U.S alone who is fighting Crohn's/Inflammitory Bowel Disease compared to the millions of people who are fighting cancer in the U.S.  

Virginia has begun posting things about Crohn's disease on her facebook and is one of my great supporters on facebook/social media.  Thank you Virginia for sharing this poem and allowing so many to know how you and others feel as you have to watch me fight against this disease.  

 

I watched you suffer
Watched you heave
While you leaned forward and poured
Your broken spirit
On my compassionate soul
I wanted to reach out
Reach out and touch your heart
My dear and only friend
Oh how it pains to see you fall apart

But the ties we had
The lies, the sighs
Have become your living wake
As I tried to heal your spirit
And blessed it while it ached
The weariness worn on
Has got you like a curse
And I, my sweet, unforgotten friend
Fear I may still know worse

Happy Birthday Miranda you have a new incurable illness along with the Crohn's Disease

I have finally forced myself to write a new blog and update on my condition and what has been happing since my last blog post when I was prepping to go into the hospital for my Upper GI and Colonoscopy.

March:

Had to stay 2 days in OSU hospital to prep and have my Upper GI and Colonoscopy.  Was one of the worst hospital stays ever because I was so violently sick trying to drink that horrible stuff to clean me out and prep for the tests.  Had to be given shots of pain meds and nausea meds every 4 hours.  My blood pressure and pulse got out of the control and they had to hurry and get me blood pressure meds in me to get it regulated again.

Finally got through the prep for the tests and the next day I had my procedures done.

The Results: Crohn's is not as bad as it was on my first colonoscopy almost 2 years ago they were actually able to finish this one when before I was so inflamed from the Crohn's being out of control that they couldn't even get the scope into my small intestine.  However, the Crohn's is NOT in remission and is active where my small intestine and large intestine meet.  Also I have ulcers through out my intestines, and I also have internal hemorrhoids.  So the Humira injections have helped a little but after 8 months of being on it there is no change and I am still running to the bathroom 6-10 times a day, diarrhea, vomiting, severe stomach and abdominal pain to the point at times I can't hardly walk or do anything but lie in bed until it passes.  I'm still not able to eat much other than noodles, potatoes, carrots, breads, applesauce, chicken, fish and rice.

Also In March I had another Gastric Emptying Scan to see about the Gastroparesis diagnosis.  The results showed that my stomach is slightly delayed at digesting my food, but not slow enough to officially diagnose me any longer with Gastroparesis, so that diagnosis has been removed and I am no longer on medication for Gastroparesis.  It appears all problems with my stomach are caused due to acid reflux and Crohn's.

April:

In April I had the STAPH Sores Return on my body that I have been fighting for 4 years now.  I went to a dermatologist and he says I have basically chronic STAPH infection and there is no cure for it.  The only thing to do is try and keep me away from people who may be caring STAPH and exposing me to it. Use a extreme anti bacterial wash once a week when the sores are under control and not flared up for the rest of my life and when they are flared use it every day until they get back under control again. And also use prescription antibiotic topical skin creams to heal the sores.

So when I was diagnosed with this new chronic illness, I had to immediately go off my Humira injections to help my Crohn's disease for a month.

I was finally able to start them back up again just this past Saturday after 4 weeks of being off it.

Oh also I'm in a fight basically with my GI doctor because he is now even after doing the colonoscopy and endoscopy and there is the proof that the crohn's is NOT in remission and still out of control. He believes, "that you need to see a psychologist and get cousneling, for your pain." He is saying that all this pain and my symptoms are all in my head and that he doesn't understand why I'm in so much pain and still having such severe symptoms.  UH maybe because I have ulcers in my intestines, and active Crohn's disease along with internal hemorrhoids.  All of which would cause pain when Poop is grinding against them.

So when I go back to see him at the end of June, this may be my last visit with him and we may have to again look for a new GI doctor, because if he doesn't do a med change and try something else to try and get me into remission so I can have some kind of a life again.  I'm done with him.  I've been seeing him for over a year now and he's only done one med change and the Humira is not getting me into remission and I feel no different after 8 going on 9 months.

This is already my 3rd GI doctor in 4 years and it's really sad because this doctor specializes in Crohn's disease patients and is at what is suppose to be one of the best hospitals in the whole U.S.A So where do you go from here when you're already suppose to be seeing the best?

My 32nd birthday is a week from today and I don't even care at this point. I'm too sick to do anything to celebrate it.  You really don't feel like celebrating your life when you have a incurable disease that has taken your life from you and now you have just been diagnosed with another incurable condition and will have to fight STAPH and possibly MRSA infections for the rest of your life, and if it gets too severe it could kill you with the way my immune system is so compromised if my body doesn't respond to the antibiotics. 

Preparing To Go Into The Hospital For My Upper GI and Colonoscopy

This week is going to be so hard.

On Wednesday Afternoon March 6th I am being admitted to Ohio State University Hopsital in Columbus to be monitored as I prep for my Colonoscopy and Upper GI Tests they will be running on me the next day March 7th.

Why I have to be admitted for the prep is because I get violently ill when having to do the prep and vomit up the stuff you're suppose to drink to clean your colon out.  And already being very ill and nausea's every day without even doing the prep my doctor decided it would be best to have me admitted since I had to be rushed to the emergency room the last time they tried to do a test like this and because they couldn't get my nausea, vomiting and pain under control. 

Jeremy will be spending the night with me at the hospital and he as well as my Mom will be with me the next day for the tests.

I'm not scared to do the tests it's the prep that scares me. On top of the prep making me sick.  I will not be allowed to take my medicine that helps me from getting nausea's and sick to my stomach, and without my meds I'm always violently ill, even more so than when I am taking them. 

Then Of course depending how good or bad I am doing after the tests I may end up staying in the hospital longer to recover.

So last week was spent getting the house cleaned and in order, so that we are ready for these tests and I can come home to a clean house and not have to worry about anything. 

Today was spent getting laundry done, printing out an updated list of my meds I'm on and packing the meds I might be able to take while in the hospital.

Tomorrow will be spent packing and making phone calls to find out when I will be admitted and also starting on a semi liquid/soft food diet to prepare for the tests. 

Then we leave to spend 2 days at OSU.

My only worry in doing all this, is that the doctor will not find out anything and will come back and tell me he can't figure out what is wrong with me and why i am not getting better. 

My prayer to God is to allow them to find something because 5 years of living this way is too much and Jeremy and i can't take anymore!

I'm so tired and so is Jeremy of day after day after day watching me in pain, the nights and days of vomiting and diarrhea and sleepless nights that never seem to end, is just becoming too much for him to handle.

Pray for us please we desperately need them.

One Of My Worst Fears Came True

Saturday Feb. 10, 2012 Jeremy took me to my Great Aunt Maggie's Memorial Service. My Aunt Maggie passed away from Alzheimer's and the family held her memorial service at the church my Granny and Aunt Linda attend. 

After the service the ladies from the church made a dinner for my family.  Well I decided to eat a small meal even though I knew I would be running to the bathroom right after.  I wasn't worried because the church had plenty of bathroom stalls in the womens bathroom to choose from if I needed to go.

Well, after eating I had to go.  I went to the bathroom all the way at the end like I always do so if I start to smell, I smell up the back of the bathroom and not the front where everyone is coming in.  So I'm sitting there doing my business, and I decide to do what is called a "complementary flush" because the bathroom was beginning to smell.  I flush the toilet while sitting on it, but after a few seconds I feel water hitting my butt! I stand up and the toilet is over flowing! I can't Stop it even though there was a plunger in the stall and I was plunging as fast as I could, along with my pants down around my ankles (yeah I was a sight to behold).

I'm standing in the stall plunging with my pants down around my ankles, and the water and what I had done in the toilet comes running over on the floor and goes everywhere.  At this point I just wanted to die! I'm in a public bathoom, the toilet has over flowed with poo and water all over the floor and I'm standing there with my pants down around my ankles all at the same time. One of my worst fears has just come true!

I pull my pants up and run out of the bathroom down the hall to where my family and friends are and tell my mom what has happened. Luckily my Aunt is the janitor for the church so she had her husband get in the janitors closet and get us a bucket of water and a mop.  And God Bless my husband! Because he went in the bathroom and cleaned up the mess so my Aunt wouldn't have too since I was already more than embarrassed.  We got the mess cleaned up and even though I was mortified my family was understanding and no one made fun of me or was mean.  I'm just happy it didn't happen around strangers because that would have been even worse and I think I would have dropped dead right there. 

Having Crohn's is bad enough but dealing with stuff like this especially in public makes it even worse, but thank God for a loving husband and family. 

FINALLY! Something Goes Right For A Change

So in my post yesterday I shared about once again fighting with this hospital over another medical bill.

Here is the link so you can read it for yourself and understand just what I go through on a monthly basis with this hospital.
http://www.mirandacwrites.blogspot.com/2013/02/caught-in-middle-once-again.html

Well, that was yesterday what I went through, today I get a phone call from the "cashier" at the hospitals billing department who I talked to yesterday. 

She informs me that the Medicare part of their billing dept. FINALLY located the payment from Medicare on this bill I've been fighting over since Dec. 2012. 

To make a long story short who ever was dealing with this payment from Medicare for this bill screwed up and sent this payment into the outerspace of their billing dept.'s computer billing system. 

So first good news is they have fixed the bill, second good news is I don't owe anything on this bill.  The Payment Medicare made covered the entire 598.00 dollar bill.

The Cashier also told me that my 2 other accounts with the hospital are fine and that if I should have anymore problems in the future to call her and not deal with their billing dept.

Praise God, for the little things right? Because I haven't had any good news in months about bills or my health. Nice to have a change.

Caught In The Middle Once Again

I get so tired of being caught in the middle of the fights between Medicare/health insurance companies and Hospitals billing departments.

Jeremy and I have been fighting Since my car accident on Sept. 5, 2012 to get Medicare to pay what was left on my emergency room visit for my accident after my vehicle insurance covered 2,000 dollars of the bill. Which left Medicare with 598.00 to cover 80 percent and leave me to cover the remaining 20 percent.

After months of fighting with Medicare to pay their part, they finally did on Dec. 17, 2012 and electronically paid the 80 percent and left with with a balance of $100.98.  However, in december I didn't know this and received a bill from the hospital (which I'm always having troubles with their billing dept.) saying I owed 598.00 dollars and that Medicare has refused to pay on this bill.

So for 2 months I have been fighting between Medicare saying they paid their part, and the hospital billing department saying Medicare hasn't and demanding me pay the bill.

Well today it all came to a head when after being threatened to be turned over to collections by the billing dept. of the hospital if I didn't make a payment on the bill by today.

So here is what all went down.

9a.m. this morning I get up out of bed vomiting and having diarrhea and all while trying to get ready to go out to the hospital to their "billing dept." to talk to someone in person and bring them my papers showing that Medicare says I should only owe 110.98

After vomiting, taking anti nausea/vomiting medicine, having 4 hits of diarrhea, and severe stomach and intestinal pains in just an hour, Jeremy gets me in the car to go to the hospital to try and work all this out.   A place I should NOT be going because I'm going to be exposed to so many germs, and illness and could place me in the hospital if I catch something, due to the fact I'm on Humira and my immune system and suppressed and I can't fight off viruses and infections.

So we make it to the hospital and go to the Cashier dept. I tell the woman what is going on and she can't do anything. Luckily her manager had come in right then and help, a little.  While waiting and hearing them saying to each other they don't know what is going on with this bill and they can't find the payment from Medicare. I'm getting worried this is another waste of time, and the waiting area is beginning to fill up with people.

After talking to her Manager about my bill the woman comes out to the waiting area to talk to me in front of all the other people there.  She tells me that they don't know where the payment from Medicare has gone and all they can do is make a copy of my paper work and resend it to their Medicare billing department which is in another state, yes another state! I ask this woman why in the world they're billing dept. is in another state, and she says, "we've gotten too big" and I thought, "with as many people in our county out of work you mean to tell me you'd rather outsource the billing dept. instead of keeping people in jobs here locally?" is what I wanted to say.

I broke down and cried I was so sick and frustrated that after all these months and coming all the way out to the hospital this still isn't fixed.  I tell the woman through my tears that I am fighting with their billing dept. nearly every month over a bill because they keep messing up and then I'm the one who's caught in the middle and threatened with being turned over to collections because they can't get it together. I also tell her about my disease and how it is very dangerous for me to have to come out here to the hospital and be exposed to all the germs and viruses going around with the medication I'm on.

Jeremy told the woman too that he spends some days up to 4 hours on the phone trying to get these bills fixed  nearly every month.

And everyone in that waiting room heard it all, one man told me "you get them girl" another elderly man who was a Navy Veteran told Jeremy "that's the way to handle it."

The cashier lady told me, that I shouldn't have to keep fighting like this and that it was wrong that the billing dept. threatened to turn me over to collections if I didn't come in here today and make a payment.  A payment she says I don't need to pay until they get this bill fixed.

She also said I shouldn't have to come in here and be exposed to all the germs and viruses with the disease I have and as sick as I am. So she gave me her name and number there at the hospital and told me to call her from now on if I couldn't get anywhere with the billing dept. and she would take care of it, so that I wouldn't have to try and come back out to the hospital again.

After giving me her number and all my paper work back after she made a copy, I asked her "now, can you promise me that I'm not going to get a phone call or a letter in the mail from the billing dept. saying I've been turned over to collections because I'm not making a payment today?" She said "you shouldn't" and with that we left with all the people in the waiting room staring at us and we feeling completely exhausted and apprehensive that they will find the Medicare payment and they won't turn me over to collections.

So now we wait for this hospital to contact us and tell us whether or not they have this bill fixed.

You have to realize we have been fighting with this hospital for 6 years now over their billing dept. we have 3 bills we are paying, and one that is nearly 10,000 dollars and so we will be dealing with this hospitals billing dept. for a long time and this is what we have to look forward too. We will have to keep fighting them every month until we can get these bills paid off and I've told Jeremy if I have a choice in where to go, do not take me to that hospital for anything other than to do blood work.  I didn't have a choice with the car accident and other than that my last time being out there was 4 years ago.

I go to another hospital in Columbus for all my other testing and hospital stays just so I don't have to deal with this hospitals billing dept. and getting harassed and placed in the middle.

It isn't enough that I have to fight the diseases that attack my body but I also have to fight for the rest of my life Insurance companies and hospitals over my care and bills.  It isn't fair and I wish someone could make it all stop.