If you are related to me or to someone with Crohn's Disease please read my blog today.  It is not meant to bring you stress but warning signs to be aware.  About 20 years ago I remember asking my GP if it was possible to have your sinus infection drain green to your bowels.  He really looked at me funny and basically didn't say much.  I remember having an episode that was clearly Crohn's Disease, put me in the ER and stitches later they said I had a bout of food poisoning or the flu.  Clearly not.  Then I moved across country and the irregular bowels which I thought were normal continued.  My OB said I needed more fiber. Which only makes it worse.  Clearly when I was substitute Teaching and running to the restroom between classes it was taking over.  Then I moved again across country a new job and I couldn't drive the kids to school without an accident.  My point being is that they don't know if Crohn's is genetic.  If you are having bowels with green mucous, pain, blood, the big D, fatigue, mucous bowels (even clear) then you need to talk to your doctor.  Explain that you have a relative with Severe Crohn's Disease.  It doesn't mean you have it, but they now have some better testing, including blood tests.  Again, my point, mine went undiagnosed as, food poisoning, the flu, lactose intolerance, stress till clearly it became severe from not being treated for twenty years.  It is fistula based (ulcers) that continue to grow and abcess if not caught and treated along with inflammation which make your bowels hard to move.  Now I'm not trying to bring the fear of god to you, but just a simple clear understanding.  Bowel disease tends to run in families, not proven but not not proven, some think it may be a bacteria, some genetics some the environment. So know your body, don't let someone tell you to eat more fiber have a colonoscopy if needed and get to the bottom of it, I wished I had sooner, it might have made my life a lot easier, meaning I may have been able to get into Remission had it been caught earlier. The worse you let it get, the harder it is to control, clearly mine is out of control.

So first off my doctor comes in the room and asks how my lactose free diet is going am I cured?  I am like what the _____?  I stare at him and then say I'm the one whose liver issues caused me to not be in your Drug Trial and I emailed you asking to see you as I am so sick.  He asked if my name was Stacy and when I said no left the room for a very long time.  Okay, so far I'm not overly impressed.  He comes back and wants to know my liver results from seeing me GP I tell them I don't know but the GP said not life threatening or enough to be overly worried about.  I told him I thought they sent him copies as I requested but he's online with the Hospital.  He said it may take him a while to get online and I said I could call and ask, he said no that's okay and again left for a long time. Okay, shall I say strike 2?  I'm grateful to be seen though so I'm being positive.  He comes back, I know he's done nothing, but insists I never had the tests done. Hmmm, my husband was with me and I remember specifically having the needle stuck in my arm but okay.  Wants to run the tests again.  Strike 3?  He's not being I hate to say (truthful)?  But lets move on.  He insists I need to have a surgical biopsy for my liver problems as I might have liver disease, I begin to cry and tell him it's just too much along with the crohn's and lupus and would it matter, the GP said it's getting better. He said he may have to insist and make me.  Make me, you haven't earned my trust yet.  I asked about LDN he had no idea what I was talking about.  I said the pain is shooting I spend most days in bed and am controlling the bowels by not eating.  He said he's putting me on Cimzia.  I said I read if you have been on Remicade and Humira and they haven't worked after being aggressively used that you can develop problems trying another strong biological, he didn't agree.  Takes me out to the nurse and said set her up on patient assistance and blood work have her return to old doctor in 6 weeks. WHAT THE HECK.  First off, I haven't agreed to take Cimzia and secondly I am seeing him not old doctor.  I go up to lab and have a note to go back to Dr's.  They said he wants a Colonoscopy, I said last time a week before you called me telling me to get it approved myself and I knew I couldn't in a week so I cancelled, I didn't want to go through it again and why do I need a colonoscopy he never mentioned it, can I talk to him and of course he is gone.  So I leave knowing they want me to go see GP to get a colonoscopy not even sure why?  Did I mention Cimzia causes LUPUS!!!!!!!!!!!!! Among a host of other things like cancer and I have a growth on the side of my head.  Did I mention strike 4 or maybe 5?  I think he's out but now what?

Awoke yesterday in so much pain I thought it couldn't get any worse.  Well guess what, it did.  The nausea and vomiting and dizziness kicked in and I was over the top!  I thought I was losing my mind and my husband said he thought so too.  Finally by the evening I decided it was time to go to the hospital and my husband suggested I go to the spare room lye down and if I didn't fall asleep then we would.  Well luckily an hour off and on all night and today I can function.  I don't feel good, but nothing compares to the day of hell I experienced yesterday.   I don't know if it was the pain, blockage of food or what, but it was bad!

PAIN UGH!

This pain is getting old.  Went to bed with excruciating pain, finally got up and took a pain pill and another at midnight just to fall asleep with a heating pad.  Woke at 7 a.m. again with excruciating pain and a pain pill and another an hour later just to bring it to a dull roar.  I cannot function with this type of debilitating pain.  This is kicking my ass everyday.  I would not wish this on anyone.  I have so much to say, but as I sit here I am unable to do so as the pain is constant and won't give up.  I know it's just my bodies way of saying hey something is terribly wrong, dammit I know something is terribly wrong, so stop already!

My pain is over the top this morning.  I am sitting here with my cup of jo waiting for my pain pill to kick in.  I have so much to say, but what I really want to get across is that I received a card at the Doctors yesterday that is for Crohn's patients to present to businesses saying that a Medical Illness makes it necessary for us to have access to a restroom urgently.  In the ten years of having this god awful disease I thought this is the most clever thing ever!  How many times have I been out and had to stand in line or been told no to bathroom access and the people in front of me have no idea of my urgency.  So with much to say, today that's my point I want to get across.  EVERYONE who has Crohn's Disease should get one.

It has been a few days since I have checked in.  Literally, I am just waiting to see the doctor.  The pain in my lower right is constant at times sharp sending me over and exhausting.  My lack of being able eat is taking a toll on my energy level and the pain is taking over my ability to sleep.  Spending a normal day with my loved ones is just too much and sends me over the edge.  My life as I knew it is no longer normal and I am longing for the days of old where my crohn's was there but not running my life.  This is and has been a hard path that I am taking and I hope for some relief in the near future.  I can't continue day in an day out feeling that my health has taken over.  They called to remind me of my doctors appointment with the new specialist on Wednesday and I said of course I will be there.  It's my last and only hope at the moment.

So my doctor (primary) was able to get my prior authorization done in a few days, usually takes a month.  They went completely electronic and even though his patient load has been low in order for them to transition, I can see the benefits.  So I called the doctors to make an appointment and 5 people later and me crying on the phone, I finally talk to my old GI's nurse and he said there are no appointments for many months and I should go to the ER or urgent care.  I hung up very disgusted.  Then I had an idea, I figured out my new doctors email and sent him a message saying I was unable to get anyone to make an appointment for me on the phone and would he please see me.  He immediately responded and said someone would be calling me and today I got that phone call and appointment for next week.  So, good news!  Nothing has changed with my health, still shooting pain, but hope that this doctor will be able to help me!