Everything you wanted to know, and then some. The honest truth, as I know it to be. Especially how I deal with being chronically ill with crohns, colitis, fibromyalgia and more. Keep up with me, the kids and anything else that goes through my brain.
I wasn't going to say anything but keep living in my peaceful world of denial but my oldest had me face up to reality. Yup, the oldest, the one from that planet calls TEENS, send me through teenhell daily and has mastered the act of how to be AND TEACH OTHERS the teenazzholeness craft
I speak more about my FMS as that is what bothers me more then anything all the time. I also have ulcerative colitis. Which seems it might be chrons or intermittent colitis. When I got my colonoscopy the other day, it confirmed that I also still have gastritis, gerd and esophagitis. Which explains why I lose my voice every 5 minutes and sometimes for days
Now, I have been dealing with this for as long as I can remember. I always knew I had mucas stools, dirrhea, pain, blood and other happenings. I was always told as a child nothing was wrong, but I was a hypochondriac.
When I turned 19 I met my husband. We decided that that was no life to lead and we would find out what was wrong, fix it and I could live a life like everyone else. So we started going to every doctor we could find. The more doctors we saw, the more illnesses I was diagnosed with. I was not OFFICIALLY diagnosed with the name colitis until I was about 29. Before then they knew something was wrong, they just didn't have a name for it
Now I am 43. Each year has just gotten worse and worse. It has really gotten worse after each child. Yet I always seems to bounce back. With this last baby I have just been unable to. I can always find a month or 2 with peace but these last 5 years I have not had 1 hour of peace with my colon
So last week you know we had the house inspection (I have a story for that too will do later). We were cleaning and what not but I felt worse then usual. I thought it was because I had been bleeding so bad the last months I was just tired. After almost fainting I decided it was time to try to rest no matter what. That night we went to my sons 5th grade ceremony and I said I was staying in bed 1 entire day the following day. Well I didn't have a chance to
When I woke up that morning, it was to the voice of one of my doctors on the phone. She was begging me to come in. I had also did some upper bowel thing a couple of days before and my colon was so enlarged it had people running in every direction. I told them I couldn't stay as I had 4 kids and my hubby had to go work. With these phone calls that day, so many of them and her being so persistent I thought maybe I should listen. They always tell me I am sick but this was different. So I agreed to go in
Turns out that my entire colon is pretty much shot to heck. The little part that isnt is already diseased so they want to take out anyway. Even if I get the entire thing removed, because I have intermetent of chrons, the bowel that's left probably will get infected but that should be years down the road. I should be able to manage it with drugs for now. I have been on steroids for so long now, even their highest dosage is barely affective. After 4 days on IV dosage, I manage to have only 1 stool that was not dirrhea and still the blood just will not stop
That is where we stood. I just was in disbelief. My GI came in one morning and he was so sad also. He refused to believe it himself and put in 2 calls. One to chief of surgery somewhere, and the other to a friend of his, Dr Elliott
He sat in my room on a call and they discussed me for what seemed like almost an house. He told his friend I had 4 kids, I had been fighting this for years and once I had decided to have my lats baby, the others doctors just refused to treat me. (I think I am the only person we all know that has had 4 children with the illnesses I have so its a big thing) My GI is the guy I had prayed about. I truly believe that he was sent to me by God and he is aware that I believe that. He is the greated doctor I have had in years. Even knowing my battle is an up hill one, he still tries, he still fights for me and most of all he knows me. He is my only doctor that knows my name, I am married and have 4 kids WITHOUT LOOKING AT MY CHART. Ok, sorry, got off track. I just so love him!
His friend is a genius in his field. So they came up with a treatment for me that he felt would work. My doctor was so excited he was jumping up like a little kid haha. The only thing was one of the meds was experimental and would it be covered under my insurance. So he started me on tests right away and the drugs taht we knew were covered while we waited
To make this longer story...less longer haha, it was not approved. Medicare has now made my husbands insurance primary. His insurance will not cover anything pre existing until October 9th of this year. So medicare wont even pay their dedictables or my own. After 2 days of being in the hospital medicare already sent a bill for over $1,000 for my part and would add to that. The drugs I needed were $7,000 - $10,000 per month and medicare or blue cross would pay. I dont qualify for anything else, any state or federal help. I dont qualify for any colitis/chrons studies I have fms also and the symptoms are too similiar.
This is where I am right now and the reason for my blogging. My son and hubby says well, now we just have to wait. I am thinking wait for what? We know whats going to happen. In June I will be going in to lose my colon and come up with a colostomy bag. Something else to care for and STILL be sick from the chrons, fms, etc. Then I remember why I had not fallen completely apart
Remember I had taken imuran for months before. It was working great but it left me prone to the flu, strep throat and everything else. i was sick for the entire 4 months I was on it from one thing or another. Yet my colon was doing much better. So this is what they released me on. On a smaller dosage with another medication to boost it. So I was STILL on something.
If this works, I can stay on it endlessly. If it works even for a short while, I can stay on it until after october when blue cross kicks in, have the surgery and it will be covered. Maybe I can even make it 2 more years and get into one of those programs where they are regrowing organs. The posibilities are endless. The possiblities God has given
There is one other hitch though. No one wants to pay for that either. They feel I am a lost cause so why bother. They just want my colon out so they can stop paying for these drugs. So the pharmacist if faxing my doctor again to see if they can now get blue cross to pay for it since its not actually a colitis med. So I am waiting
I need prayers. I need prayer that my colon will not rupture before June. I need prayers that I dont have to spend another week in the hospital and risk hubbys job. I need prayers that this medicine works and that maybe I can even find a remission. I need prayer to just remember to have hope. To remember there are still posibilities. To remind me of God
Can my road of fighting be finally coming to an end? Nope. One reason is because God gave me people to ahve my back. The other reason is beause there is no end. As long as I wake up another day, with a colon or not, I have won. There is no end for me. I woke up again today. I had coffee today. Today is just the BEGINNING...again.
Here is a pic of what the bag will look like and 1 persons way of caring for it http://blogs.healthcare.com/leemega1/2008/06/21/photo-set-2-living-with-ileostomy/
bag = http://ucstory.wordpress.com/files/2008/05/ib-14.jpg stoma = http://ucstory.wordpress.com/files/2008/05/ib-1.jpg
BTW, EVERY woman I know that has a bag has lost their relationship. All but one but I lost touch with her years ago. First their hubby cheats, then leaves. Or in one case, they live together for money reasons and just a silent understanding he cheats. That is my other concern. Yet I know if hubby leaves after 25 years its just how its meant to be. Pray for me
and we always will!
--- Live your life in such a way that when your feet hit the floor in the morning, Satan shudders and says, "Oh shit...she's awake!"
peaceful 
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