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Thursday, December 29, 2011

I have had a lot of stress this December. My wife was in the hospital for a week, over Christmas, with seizures. The Docs placed her on a 24 hour a day EEG monitoring device and she immediately went from having multiple seizures in a day to having 1 sezure in a week. Normally that is a good thing, except we needed the readings to get a diagnosis. Anyway, they did reduce her seizure meds and I have hopes that will help her in the long term.

December 1st our hometown was hit with 130 mph winds which managed to tear off 1/3rd of the roof off our house. A peice of the sheathing from our roof hit our 2003 Honda Pilot, causing about $4300.00 damage to the passanger side of the vehicle, and destroying a fence. Another peice ended up on our next door neighbor's roof and a third peice ended up in the backyard of the house across the street. Several people said they say a small twister hit our house, and roofing debris was thrown about 150 to 200 feet in the air. Our entire neighborhood received significant damage. I do not know anybody in our area who did not have some damage from this windstorm.

Dealing with all this has led to a lot of stress, and my Crohns has flared big time. I had abdominal pains and the "D".  My G.I. has prescribed Budesonide. I really thought I was going to be introduced to the Pred, but he thought it would be better to do the Budesonide. It is a topical steroid and is applied directly to the spot in the gut where the inflammation is. I would rather due this than have the pred that goes throughout the body and attacks everything in site.  Well.  I think the med is working, my flare is going down, and my BM's are returning to normal. 

Saturday, November 26, 2011

My Crohn's has been doing well for the most part. No news is good news on that front.  I have had a minor flare in the last few weeks, I think brought on by stress.

My wife Sandy has has a series of seizures in the last 10 days. A grand mal followed by 3 petit mal seziures. The grand mal was the first seizure - happened a week ago tuesday, just as I was leaving for work. The other 3 have happened in the last 3 days. Including one that happened at the neurologists' office, right in front of the doctor. I am really wondering what is going on in my wife head right now. I'm scared.

Saturday, August 13, 2011

I can't have the A&W Cheesburgers !

In the last 2 weeks I have had a Cheesburger from A&W twice. First time was with Fries and a Sierra Mist. I paid for it the rest of the afternoon, 7 trips to the bathroom and bad pain.  I thought it might be the fries, so last week I had one with a Sierra Mist and no fries.  I know the soda does not bother me.  Well, I paid for it again that afternoon. Exact same symptoms.    Looks like no more greasy cheesburgers. 

Thursday, August 4, 2011

Another Fun Diagnosis! Central Sleep Apnea

In June and July I had sleep studies done. My old G.I. was concerned because my energy level was not as good as it should be at this point after my surgery. He told me to have my neurologist order a sleep study, which she did.

It turns out that I have Sleep Apnea. I stop breathing when I am asleep. There are two types, obstructive sleep apnea - where something in your respiratory tract blocks the air from entering your lungs, and central sleep apnea - where the brain simply forgets to tell your diaphram to work. 95% of all cases are obstructive.  5% are central. Of course, I am a member of the 5%.

I am now living with a CPAP machine at night. I thought this was going to be an adjustment. Well.... I feel so much better after being on the CPAP that I do not want to go back to sleeping without the machine. My energy levels are up. When camping I went on a 5 mile hike - first hike in many years. I feel I am begining to have a life again.

Oh, My wife Sandy, has been diagnosed with Sleep Apnea as well. She should be getting her CPAP in a week or so. After her sleep study for the CPAP titration, she had one of her best feeling days in a long time.  I think our Neurologist was inspired by my results and said, lets try that on Sandy.

Follow Up Appointment

I had an appointment with my G.I. a few days ago. Nothing major. I just got some prescriptions renewed. I have been on Humira for 5 weeks. I am still having the "D".  My next G.I. appointment

Today I was feeling pretty good, but I messed up with my lunch.  I had a greasy burger and fries from A&W. In an hour I was in abodominal pain from cramps, making multilple trips to the bathroom, and passing gas at an incredible rate. I could not get it under control so I left work early and went home. I think my crohny guts were reacting to lunch. I think I will be avoiding that temptation for a while. No fast food for a while. Darn.

Monday, July 4, 2011

More Crohn's Inflammation.

I had my annual colonoscopy last Friday. My G.I. found inflammation at the surgery site. He did take a biopsy and we are waiting for results, but we are sure it is active Crohn's disease. I am really upset because of having to wait for Humira approval for 8 months. I am sure that if I had been on Humira from the start I would not have the inflammation I have today. I will be scoped again in 2 months to see if the Humira is working on this inflammation. If not, my G.I. will stretch out the partial obstruction with a "balloon" on the end of the scope. If that does not work, I will need another surgery.

I was really hoping for a clean scope. I am so tired of this.

Friday, June 24, 2011

Oh, The Loading Doses

2 days ago I started the loading doses on Humira.  For Crohn's it is 4 injections the first time, 2 injections 2 weeks later, and then 1 injection every 2 weeks for maintenance.  I decided to use the Humira Pen. 

I am what I thought was a "former" needle phobe. I have now found out the phobia is alive and well, in regards to giving myself shots. I can give shots to others and have no problems. But not the same when injecting myself. 
Because I had been trained on how to give shots my Dr. decided I could do this on my own. Well, the instructions say you can inject in the thighs and/or the abdomen. 

The first injection was in my left thigh. I was nervous, I was shaking, but I managed to give myself the injection. They said there would be a click, but to me it sounded more like a canon going off. The medicine came, and it hurt like hell! But I managed to be OK with this injection.  After this one went OK my wife and daughter left to go shopping. We thought that after the first time, I would be fine. 

Then I tried injection #2, in the right thigh. I prepped the site, got everything ready, and when I pressed the button on the pen I jerked when the cannon sound went off! Medicine flying everywhere.  I got very upset and decided to wait until my wife got home. Then I did something you are not suppose to do. I tried to put the caps back on pen #3. This caused that pen to inject while it was laying on the table. The instructions say not to put the caps back on the pen after they are taken off. 

I called the Humira Nurse support line and found I had to leave a message because it was after hours. To their credit, they tried to call back within a 1/2 hour as promised but I did not recognize the number on the caller id and we have been received a rash of calls from 800 numbers which we are ignoring. If it has said Humira or Abbot Labs  I would have answered.  The next day they called again an were more than helpful in arranging for 2 replacement pens - no additional charge, and in convincing my wife that she should administer my shots. She is a lot better at it than I am. 

We used the two pens from the starter pack for shots 3 and 4 of the initial dose on Thursday night. The second dose is in 2 weeks, so we will have the shots from Abbot Labs by then. On Thursday night my wife injected me in the abdomen, which was a lot less painful. 

As far as side effects,   I have had no site injection reactions, and  no other reactions as of yet. Despite the problems I had Wednesday night, it is nice to be on the med. Humira may actually work.