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. 

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.

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.

Remission has not continued.

I guess I spoke too soon.  I am not having the pain, but complete remission has not been maintained. It is really not a surprise, after my doc called Asacol  like "Pissin in the wind!"

I am also having to go to a new G.I. doc.  My doc decided to retire. I have an appointment with a doc who is actually my old G.I. doc (whom I also liked). He also had planned to put me on Humira after the surgery. Since Asacol is not getting me to complete remission (the "D" and ribbon shaped stools have come back) I think we need to push the Humira again.  Insuance should approve it this time.

A Crohn's Remission?

I can't believe it.  The insurance has not yet approved Humira, so I am still on Asacol HD.  Well,   I think it is working. The "D" has stopped. I have not had to literally run to the bathroom in a week. My bowel movements have been almost normal. I am stunned.  I have not had this kind of improvement in years. Thank the Lord.

Tomorrow will probably be my last visit with my G.I. doc, who is retiring. I am really sad about this. It took me years to find a G.I. that would take me seriously and then he retires on me. Not looking forward to the search for a new G.I. doc. At least I am not currently flaring, finding a new doc then would be a problem.

My Neurologist prescribed a sleep study, which I had last Thursday. The tech told me my oxygen level definitely moved around during my sleep.  You know, I had enough wires stuck on my that I felt like the Frankenstein monster.

Essential Tremor - The other disorder I have that no one has ever heard of.

Over 2 years ago I was at a business meeting and, when I tried to shake the other man's hand I felt my hand shake. I thought it was weird, and hoped that he did not notice it. A few days later, my right hand started to shake every time I lifted it up in the air. It did not go away. Actually, it freaked me out. No control of my hand unless I relaxed the muscles. I made an appointment with my GP.

The doc gave me a traditional neurological exam and told me he thinks I have Essential Tremor (ET).  He scheduled me for a Brain MRI. The MRI came back normal, which is normal for ET as well. The MRI ruled out other problems, like a brain tumor, as being the cause. I was referred to a neurologist who confirmed the diagnosis and put me on Propranolol to control the tremors. It works pretty well for me. Most people don't notice my shaking.

Essential Tremor is in a group of diseases known as movement disorders. It is the most common disorder of this group - approximately 10,000,000 Americans have this disorder (compared to 600,000 for Crohn's Disease). Yet most people have never heard of ET. Other diseases in this group are Parkinson's Disease (thanks to Michael J Fox and Muhammad Ali - much better known than ET), Restless Leg Syndrome, and Dystonia.

Since the start of ET's appearance the tremor has become worse in the right hand, and spread to my left hand, then to my legs, and most recently to my head. I have to use either very fat pens, or a ergonomic pen called the PenAgain to keep my right hand from shaking while i write. Using a computer has become much more of a challenge. People with severe ET often use voice activation software so they can dictate to the computer instead of type. Some also use special mouse's   that are programmed to ignore the movement due to the tremor. I am not at that point though.

ET is often confused with Parkinson's Disease. The differences are this, the Parkinson's tremor happens with relaxed muscles. (I would really hate shaking while at rest!) Parkinson's also leads to stooped posture when walking, which does not happen in ET. The ET tremor happens when the muscle is active - the exact opposite time as Parkinson's resting tremor.

I have wondered if my Crohn's disease could have led to the ET. I asked my Neurologist that question and she just dodged around the answer. Maybe she doesn't know. I wish doctors would just answer honestly when they don't know the answer. It would make things so much easier.

Insurance Battle

Since I had my surgery my G.I. Doc has been attempting to get me on Humira. My insurance company has refused twice to approve Humira, and it is beyond ridiculous. They claim I have not been on two other approved meds and failed them before. I have been on Welchol (for Diarrheah), Flagyl (inflamation of bowel), Cirproflaxaxin (inflamation of bowel), Loperamide (Diahreah). Cipro worked in getting pain relieved, but none have worked long term. The other reason for declining Humira is they don't consider me a severe case. This although I had surgery to remove parts of my bowels in October 2010. The surgery is done only on severe cases of Crohns.  We appealed this decision and won on the severity issue, but not on the use of 2 or more meds. I was put on Sulfasalzine for 2 months (which made me feel worse than when I had no med). Again they declined approval of Humira.

I have now been put on Asacol HD, which my G.I. Doc said last week was like "Pissin in the wind."  Asacol is a good med for mild to moderate crohn's disease, not for severe cases.

I have filed a complaint with the state insurance department. We'll see what happens from that.

Having the guts ripped out of me.

After all the stuff that happened to me last year, I had my guts ripped out of me.

Well, it was done through surgery. I had the illeum, about 2 ft of small bowel and 6 inches of my colon removed. The surgery took place October 12th, 2010. It was a full blown surgery, could not be done laproscopically. I had a large Crohn's mass that needed to be removed. Some of my small bowel had to be stretched out, it was folded up like an accordian.

I think the surgery was the best thing I could have done. Recovery took about 6 weeks.  Since then I have entered the next phase of my crohn's journey, maintenance, and ........ The dreaded insurance company battle!

What has caused all the pain.

My pain back in June was caused by a partial obstruction in my small bowel. Crohn's causes sections of the bowel to become inflammed, and one part of my bowel was almost entirely swollen shut. This blocks food from traveling down the digestive tract, and is really painful. My doctor has told me that the pain I have had on those ER trips was as bad as labor pains.

I was referred to Dr. Jeffery Poole, a G.I. doc at Davis Hospital. Dr. Poole gave me every test under the sun. I had several blood tests, colonoscopy, upper endoscopy, and a barium test. I also had tests where you breath into a bag and they take chemical readings of your exhaust. 

The barium test was the kicker.  I set the Davis Hospital all time speed record for the barium pass through. This test should have taken up to 8 hours. Mine lasted 15 minutes. Yes, I had a fistula that was bypassing most of my small intestine. My next step was surgery.

I wish my previous docs had been more aggressive. I think I could have avoided a lot of this if they had done their jobs in 2004.

The ER Trips

7 years ago (June - July of 2004) I had the most painful time of my life. I had a series of Crohn's attacks. This resulted to 6 trips to the emergency room in a 2 month period of time. When these attacks came I thought I was going to die. In fact, my wife tells me that I said to her that I would rather die than go through it again. I don't remember saying that, but I don't doubt I said it either.

Before my first ER trip I had gone to a clinic and was referred to a G.I. Doctor at McKay Dee Hospital in Ogden, UT. Before I could get in to see him I had 3 trips to the ER at Davis Hospital in Layton, UT. I did my ER trips at Davis because that hospital is closest to our home. They gave referrals to a G.I. Doc at Davis Hospital and I really wish I had followed up with that referral. The G.I. doctor at McKay Dee was a joke.

My G.I. doc performed a colonoscopy, but did not get the scope into the terminal illeum, which is the end of the small bowel, where the small bowel and the colon meet.  This is the most common site in the entire digestive tract for Crohn's to show up, and he did NOT scope it. I was not aware of that until recently.

He diagnosed me with Irritable Bowel Syndrome (IBS) and sent me back to my regular doctor for treatment. I went from 2004 until 2010 thinking I had IBS and being treated for it. By the way, the diet for IBS - more bulky fiber - is the exact opposite of the suggested diets for Crohn's disease.

In June 2010, the same painful attacks of 2004 were back. I went back to the ER and, for the first time, I was told that I have Crohn's disease. The ER doctor diagnosed it! He took X-Rays, and a CT scan of the abdomen. From that, he told me I have Crohn's. He referred me to a new G.I. doc and finally I was taken seriously.

Start of the Crohn's Journey

Of my two conditions, this one is the more dangerous one. Although I was only diagnosed last year, I can see this thing started many years ago. In my late teens and early 20's I had what I now know was my first Crohn's symptom. Bloody Stools.  This was about 1981 - 1983. They would come and go. Usually by the time I could get into the doctor they had disappeared. Also, I did not have insurance as I was just getting into college, so I did not push getting to the doctor as much as I should have.

The doctors seemed to have the attitude that if the symptom was not happening at the time I saw them, then it must not be a very big deal. I was not diagnosed with any particular disease. All I knew was the blood in the stool was not normal. I remember being put off by the doctors time and time again. Nobody taking me seriously at the time. I also had occasional bouts of diarrhea, which the doctors also did not thing was a major concern, just told to not eat so much junk. My problems with the medical profession not taking this seriously would go on for years. I did not present like a typical Crohn's case because I did not have pain. That would come in a big way later on.

Essential Tremor and Chron's Disease, at the same time.

Hi everybody.  This is my first ever blog posting, so please bear with me.

I am a 47 year old male from Utah. In the last 2 years I have been diagnosed with 2 potentially disabling diseases, which few people seem to have ever heard of, Essential Tremor and Crohn's Disease. This blog is for anybody that wants to hear my story. Today I am going to start with a explanation of what the two diseases are. Later I will blog about my trials with the 2 diseases. I hope to be able to help others with these conditions as well as find help from others.

Essential Tremor (ET) is a uncontrollable tremor that occurs in various parts of the body when the muscle is active. It is a neurological condition that is classified as a movement disorder. Even though ET is the most common of the movement disorders, it has a better known cousin that it is often confused with - Parkinson's Disease. My tremors started a couple of years ago. It started in my right hand. Whenever I hold my arms out straight in front of me I they shake. It makes writing, typing, picking up small items and sometimes drinking an adventure. Tremors can also appear in the head/neck, and legs.  I have had the experience of all these tremors. ET has no cure, but there are therapies for controlling the tremors.

Crohn's Disease is an Inflammatory Bowel Disease. The immune system attacks the digestive system, causing inflamation. Crohn's can occur anywhere in the digestive system from the mouth to the anus. It most likely occurs in the small bowel and large bowel, especially where the two connect - ther terminal illeus. People with Crohn's have a lot of pain, trouble with losing too much weight, lots of gas and diarhreah. It is common for Crohn's to cause 10+ bathroom visits a day. This disease causes a lot of painful trips to the emergency room. I will tell you about my trips to the ER in future postings.