Hi everyone,

I don't know where to turn to, so I found this community.  I am a 35 year old Electronics Engineer out in California.  My life has been changing as the years go by.  In the past I liked driving to places, going out to eat and drink with friends, riding roller coasters, going fishing BBQing.  Overall I had a great social life, that has all changed in recent years.  In 2009 I was told I had UC after finding blood in my stool.  The local doctor here told me in 2010 that 25% of my colon was affected.  After another Colonoscopy a year later I found out that 50% of my colon had been affected.  The urges to use the bathroom were increasing and the presence of blood was getting more and more obvious in my stool.  In 2012 I got another colonoscopy however the doctor was unable to perform it because my colon had become so inflamed that he couldn't go in there.  He then put me on a large dosage of Prednisone and I have been tapering down to about 10mg per day since then. 

One day he told me that I needed to start immune suppressant therapy and it was then I decided to turn to the doctors at Stanford Medical Center.  The doctor that I see there is way better than my local doctor.  so obviously I switched doctors.  He immediately got me off of the high dosage of Asacol and put me on Lialda while decreasing my dosage of prednisone.  I was able to get in for a colonoscopy last year and he found that my colon was now 100% affected.  A couple of months later he gave me the results and informed me of what to do next.  He said that I had to start infusion therapy as a final resort before they take out my colon and connect my small intestine to my rectum. 

In may of this year I called Anthem my insurance, and they informed me that they would cover remicade treatment however they won't be sure until the final bill comes.  Around that time My employer changed hands.  And with that change came a change in insurance.  Since I am in the Union I was told to decline to new overpriced low coverage insurance that was offered through Cigna.  I went 1.5 months without insurance.  And it sucked.  Eventually the union switched over to Cobra to provide the same Anthem coverage as before until a new contract can be reached.  So in July I finally got coverage again and was able to pick up where I left off.  so I scheduled an appointment at my local oncologist with a infusion center. It's primarily for cancer patients but its the closest thing I have near me.  My oncologist could not write the prescription for Remicade because she doesn't have a background in GI.  So I had to keep bugging my doctor at Stanford for a prescription.  Finally in late august I received the prescription and scheduled my infusion for August 26th and then two weeks later on sept 10th.  My third infusion was supposed to be on October 2nd.  But unfortunately the union and the employer I work for came to a new agreement for a contract, and thereby putting us on the union insurance (united Healthcare) instead of the Cigna.  Since it was a new insurance I had to wait 15 days for the approval for remicade.  On October 26 I saw my doctor at Stanford again and he was irritated that they let me go so long without infusion, its not a treatment you can just stop and start.  On October 28th I finally started my infusion therapy again.  However the insurance only approved me for 3.  So I am stressing out about how I am going to be able to receive the others after that. 

Right now I am battling with the insurance company Anthem over the cost of the first two infusions at a cost of 24,000 each.  The insurance denied my claim saying that remicade is an experimental therapy drug and I haven't tried any other options for care.  Which is BS because I have tried Steroids, Immune suppressors, Lialda, Asacol, lomotil and my condition keeps getting worse and worse.  Stress in all of this does not help the situation.  And it sucks that we as patients have to battle it out with the insurance companies.  They don't believe that you are truly sick. 

I have just become so overwhelmed with all of this that I don't know what to do.  I know I have to keep trying to get them to cover the costs but there are times when I wish I didn't have this disease.  It has affect my life to a point that I don't go out anymore.  I am scared to drive long distances because I might have the sudden urge to go.  In fact the other day I had to go while driving and had no place to go so I had to go right where I was.  Having lost control of your BM really brings you down to a point where you feel sad and question what you have done to deserve such a horrible disease.  Like I said I don't know where to turn to.  My family doesn't really understand the embarrassment and pain I go through everyday.  My wife has been by my side ever since and helps motivate me to get out and enjoy what I can in life otherwise i'd be locked up all day, with the exception of going to work 5 days a week. 

I hope to learn more about others with the disease and how they are coping with it on this forum.  Right now my swelling and blood loss is about the same.  The urge to go is always there especially after a meal.  I purposely avoid drinking anthing or eating anything while I am away from home for fear that I might have an accident.  This disease sucks, and I am sorry for the long post and Im sorry if I violated any forum rules with it.  I just had to tell someone.