A Visual of My fight With Crohn's Disease

The Song "Death Of Me" By The Christian Rock Band "Red" I feel is a lyrical vision and so is the video of what my fight with Crohn's looks like.  If you want to understand my fight then watch this video

Crohn's, It Takes Everything From You And Yet It Demands More

My New Hair Cut Thanks To Crohn's Disease

As I wrote in the title of this blog, Crohn's really does takes everything from you and yet demands more. And now it is taking my hair. Today after 3 weeks of fighting with my hair falling out in handfuls due to Crohn's and the Humira injections, I went and got all my hair cut off.

This is the shortest my hair has been since I was in kindergarten! I didn't cry at the beauty salon until after my hair was cut and i was walking to the car for Jeremy to take me home.  My hair was to be completely honest, was the only thing I ever liked about myself and now that is gone too.

No matter if it grows out I'll have to cut it again once it starts to reach my shoulders because that is the length when my hair starts to really fall out.  It's as if when my hair start to have some weight to it, it just breaks off in handfuls.

  I can't tell you how many balls of hair I've found on the carpet and every time I find one it's scary because you aren't expecting to pick up your hair.  Because the balls look like dirt or that someone has spilled something on the carpet but no it's my hair.

To try and help stop this from continuing to happen, Jeremy is going to go get me some Prenatal Vitamins and see if that helps.  But for now I'll just have to stick to cutting my hair off every few months.

When I said Crohn's Takes Everything and demands more, here are a few things it has taken away.  But then I will share what it hasn't in a hope to still stay positive despite all the negative

Things I can't do 
intimacy with my husband
going out in public
going to church
play the drums
Going for long hikes in the woods
Bike Riding
Playing Softball
having people wanting to come visit you (before i was sick i had people come to visit and i would go visit them, but not so much now)
enjoying a meal
getting enough nutrients to feel healthy
waking up in the morning feeling refreshed and awake
getting to places without having to pack a big back pack full of meds, food, water, vomit bags, tissues, hand sanitizer and doctor masks (incase I go into a place where people are coughing alot and are sick then i will have to wear a mask)
Going on Vacation with my husband or loved ones
Going for a drive out in the country
(I could keep going on but i won't, you get the picture)

Things I still can do
Read/Read my bible
spend time with my spouse and enjoy his company
write
crochet
draw
watch movies
take short walks around the house for exercise
play video games with my husband
help my husband do some of the house chores
listen to music
play piano
sing
help my husband with ministry work, when i can
Take bubble baths

If you are wondering has Crohn's effected my mind? Yes it has, it is so easy to be depressed any normal person would be. and I am. But I still continue to fight I get up every day and put on clean clothes brush my hair brush my teeth and clean my self up take my medications and try to make the best of things

I will share this story with you before I end just how quickly I can get sick and not know it is going to happen .
Last night while trying to take a bath, I suddenly got violently sick to my stomach and had not the trash can been sitting next to me I would have thrown up in the bath tub and all over myself.  Jeremy had to come running up the stairs when he heard me. Had to help me get out of the tub, dry me off, get me my anti vomiting medicine get me dressed and help me to bed.

Jeremy had been working on homework for college when I suddenly got sick and because of this episode with me and him having to take care of me, he was late turning in a paper for school and was up most of the night watching over me because I was so sick.

This disease doesn't just effect me it effects Jeremy too and at times like last night he broke down and was very upset. To take care of a Crohn's patient you have to have a great deal of love for that person because you deal with some awfully disgusting things at times and it's quite embarrassing to have to have your husband or family members take care of you and see you in this kind of state

Cleaning up vomit, diarrhea and applying creams and ointments to the body parts I can't reach because the disease has created horrible sores on them and the only time you get to go anywhere with your spouse for the day is to take them to doctors appointments, hearing me cry out all day and all night in pain at times with no way to re-leave it,  is not what someone signs up for when they get married.

But because Jeremy loves me so much he does these things for me and I don't know what I would do without his help to make it through.

So now you know the dirty truth behind this disease let us fight to find a cure because without God's healing touch all who fight this disease will suffer with it until God decides we have had enough and calls us home.

Needing To Get a few things off my chest

I get so tired of dealing with this disease.  The Pain, the constant diarrhea/bathroom breaks, and of course the not being able to go anywhere because there is a Flu epidemic going on and if I catch the Flu I more than likely will be in the hospital because the Humira medication deteriorates my immune system so I can't fight off any illnesses.

I have been on Humira since September 2012 and I'm still in severe pain. Like last night after eating a new recipe I tried out I have been up sick all night and all day in severe pain because I ate some boiled veggies, grilled chicken and all put into a pot of cream of chicken soup to make like a chicken pot pie and you eat it with biscuits I have been none stop sick.  If I'm not just eating potatoes for my only source of veggies, then I am even more sick it seems, and more times than not it doesn't matter what I put in my stomach it all makes me sick.

I'm so tired of waking up 2-3 times during the night with severe stomach/abdominal pains to the point I'm vomiting or dry heaving every morning and even popping nausea pills I still sometimes throw up.    Every morning like clock work between the hours of 6-8a.m. I'm up dry heaving or vomiting and keeping Jeremy awake and having to take care of me. Getting me medicine, and crackers or the bucket to catch my vomit.

I keep reading my bible and trusting in God that he sees my suffering and won't allow me to suffer for nothing, but at times especially since we have been experiencing so many deaths lately I wonder why God keeps me alive even though he sees that I'm suffering to the point I cry for death to ease the pain from the Crohn's.  And no amount of pain meds even dull the pain that seems to spread over my entire body at times and is unbearable.

So many people have these ideas that they have this miracle drug or miracle "something" that will cure me. I get so tired of these people and I'm just going to be honest.  Because I have tried so many "Miracle" Drugs that NEVER work and we have spent hundreds of dollars on these "Miracle" Drugs and I will Not try any more.

We have tried diets, meds, "miracle" drugs and prayer and nothing is easing my pain.  The only thing I don't give up on is prayer because it is all I have left. For God is the only one that can heal me.

It seems the doctors really don't know what to do and are pulling at strings.  They say Oh you aren't bad enough to hurt to the extent you are. Yet they say I have active crohn's in my small intestine and I also have ulcers throughout my intestines, but I'm not suppose to be in pain.  YOU TRY TAKING A POOP ON A ULCER! Is what I want to say to them and have them tell me if doesn't hurt like Hell?

I go back to the doctor Next month for my 3 month check up and to see how I've improved, but yet I have not improved.

On top of all this I'm fighting to get help to afford my Humira injections, for without any help I will have to pay over 400 dollars every 3 months to stay on this medicine and I don't have that money.  I've applied for help but am still waiting to see if I will qualify and if I don't then I don't know what will happen to me.

And while trying to get his Bachelor Degree Jeremy is continuing to take care of me and do all the shopping, helping with house work and taking care of me when I am too sick to take care of myself.  It is too much at times for 1 person to handle but he continues to do an amazing job at juggling college, ministry work and me.

So today has been a really bad day, and I needed to get this off my chest and vent.  Sorry if this may have been to honest for some but this is what a person with Crohn's deals with every day of their life.

JMC VLog Episode 36: Smart Pills, Ministry, and More Car Wrecks

Jeremy and Miranda share:

Jeremy shares about being in another car wreck just 2 months after their first one.
Finishing Fall Semester in College

Being interviewed for local newspaper
https://www.facebook.com/photo.php?fbid=10151992112568912&set=pb.259240778911.-2207520000.1357789212&type=3&theater

Becoming a Blogger for the P.P. Simmons syndicated blog
http://www.ppsimmons.blogspot.com/

Miranda shares about her continued fight with crohn's disease.
starting on humira and it's side effects and going through what is called the "Smart Pill" Procedure.
And in all this having to miss the holidays with her family again for the 4th year in a row due to Crohn's.

The Results from the Smart Pill Procedure Are In

Today I returned to OSU Hospital to receive the results from the Smart Pill Procedure I had done last week. 

What we know, is that I still have active Crohn's Disease in the bottom part of my small intestines, and I have ulcers in my large intestines.  Luckily these ulcers are not very big and are not bleeding, but still are causing me pain 24 hours a day. 

The Doctor says the Humira injections are working and the Crohn's disease is getting better but it will take time to get me into complete remission.  He also believes all my symptoms are not just from Crohn's disease but also the Gastroparesis that I fight as well. 

So here is the what is happening to treat my Crohn's disease and Gastroparesis and try to get me to where I can live a "more normal" life again. 

1. I am FINALLY able to go off the dreaded Prednisone

2. The Doctor has increased my Prilosec (antacid) medicine to try and get the Gastroparesis under control due to all the acid reflux and stomach pains I've been having (this does not include the intestinal pains from the crohn's disease)

3. The doctor has put me on a new medication that is to try and help get my excessive bowel movements under control.  He hopes this medication will get me running to the bathroom only 2-3 times a day compared to the 6-7 times day.  The only thing about this medication is that it is actually an antidepressant medication, and there are ALOT of bad side effects that go along with it like.....Suicidal thoughts, violent behavior, panic attacks, extreme mood swings.  And the last time I was on an antidepressant I ended up having all these symptoms and had to be put in the hospital and detox for a month.  So you can imagine I'm am very nervous about taking another medication with these possible side effects knowing I get them every time I've been put on something like this and it turned bad. 

But with no other options right now I'm going to start this new medication tonight, but I've already said the moment I start feeling like I'm losing my mind, I'm not taking the medication anymore and calling the doctor right a way.  I don't want to end up running over Jeremy's foot with the car again like I did when I was on meds like this the last time. Let's just say that incident was horrible and Jeremy nor his foot will never forget it.

I'm praying that this new medication will work and that God does not allow me to have these "possible" side effects because they are terrifying to deal with to say the least, and I desperately need something to help me from running to the bathroom 6-7 times a day because I'm tired of living in my bathroom. 

But for now I'm still sick and spending my days either in bed or on the couch resting and trying to allow these medications to work and hopefully get me back to remission and I can start to live again.

I return to OSU Hospital for a follow up appointment in February to see how the new medication change is going.

That's all I have to update you on for now, just keep me in your prayers as I continue my fight against Crohn's and Gastroparesis and pray that one day scientist and doctors can find a cure.

You've heard of the Smart Phone, But What About The Smart Pill? Pill with a microchip that you swallow To fight Crohn's

Yes you read the title of this blog right! No you have not stepped into an episode of Fringe, or Star Trek. This is a reality The Smart Pill!

And Guess who gets to swallow this Smart Pill?! ME!!!!

Here is the info on this "Smart Pill"

Smart Pill To Fight Crohn's Disease, Colitis And Colon Cancer

The iPill (haven’t we had enough with the “i” yet?) by the newly acquired Novartis subsidiary Proteus Biomedical. The pill has embedded ingestible sensors which deliver valuable information to physicians. These sensors can track vital signs or even monitor a patients ability to stick to their medication regiment. Information from the pill is transmitted to a receiver placed on, or embedded in the skin of the patient. All this technology is powered by your own body using the energy of your stomach acid. Information from the receiver can then be sent to a patients mobile phone and then onto the Internet for your physician to view. Another key advantage of smart pills is their ability to effectively target specific areas of the stomach and intestine. This results in lower doses of drugs needed and therefore lowered side effects.

With the sale of Proteus Biomedicals, CEO Andrew Thompson will become this much closer to seeing his dream of “better, more affordable and more available” technology in the pills patients take every day. Hopefully, in the coming years. patients suffering from Crohn’s disease, colitis and colon cancer will find more effective treatments via technology.

So to put it in every day person terms, I will go to the hospital on Monday swallow this first pill to see if I have any kind of bowel obstruction, then the next day Tuesday go to have an x ray done of my abdomin to see if I pooped out the pill.  If I have passed the pill then we schedule my appointment to go and swallow the "Smart Pill" 

When I go to the appointment to swallow the Smart Pill it will be an 8 hour event. I go to the Gastro clinic swallow the pill, then wait 8 hours! Then after the 8 hours have passed return to the Gastro clinic where they will then finish the procedure. But during the 8 hours the pill will be taking pictures of my GI tract as it makes it way through my body which in turn sends the images to a computer at the Gastro clinic. 

Pretty Crazy Sci Fi stuff huh. All I can do is pray that this test is worth doing and that it will show what is going on and why I'm in so much extreme pain and whether or not the Humira Injections are working.  

As more information comes in on this procedure I will be posting more blogs and keep you all updated.  Keep praying for me friends, they are all I have to lean on as I continue my fight against this disease and the hope that God will heal me.

 

JMC Vlog Episode 35 Car Wrecks, Crohn's Disease, & Wedding Anniversary

Miranda gives an update on what has been happening since May.  Miranda shares about her continued fight with Crohn's disease, surviving a very bad car wreck, and celebrating she and her husband's 5th wedding anniversary in the midst of all of this.

Link To Miranda's Blog Site "Miranda Writes"
http://www.mirandacwrites.blogspot.com

Link To JMC LIVE Wedding Anniversary Special
http://youtu.be/z3yG4r9VvuE