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. 

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.

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.

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.   

HUMIRA IS APPROVED!

The insurance company finally agreed to pay for Humira!  I get to start it next week. Asacol worked for a while, but I went back to my old self and started having problems again, after about 2.5 months. Anyway,  I am excited to actually get on a med that has a chance of working. YEAH!!!!

A Crohn's Update and another New Diagnosis

Last Wednesday I had an appointment with Dr. Poole. He is my G.I. now that Dr. Eyring has retired. We are going to again attempt to get approval on Humira.  I think this time the insurance company will go for it. I have failed on Sulfasalazine and Asacol HD - while having some effect, is still not getting me into complete remission. I have "D" on occaissions, Abdominal pain, and abnormal bowel movements. I have met the criteria the insurance company stated, so this time I would think they would approve it.

Today I got an email from my neurologist concerning the results of a sleep study that was conducted a few weeks ago. I have been experiencing sleep problems that have been getting worse. Anyway, I have been diagnosed with central sleep apnea. The interesting thing about this development is that my minimal study of this disorder has revealed one thing. "Conditions that can cause or lead to central sleep apnea include:  Neurodegenerative illnesses such as Parkinson's Disease".  I have Essential Tremor. I wonder how many ET sufferers have this development.  I also found out from the Mayo Clinic website that Central Sleep Apnea is caused by the brain simply not telling the muscles that control breathing to take a breath. Less than 5% of  sleep apnea patients fall under this category.

Anyway, I have to schedule a CPAP titration, and then we will determine what to do next.

I am so sick of having more medical problems.  Lets hope this is it for a while.