Ulcerative Colitis Will Not Keep Me Down!

Introduction:

I am 43 yr old male active male from Melbourne, FL that was diagnosed in July 2012. After noticing blood in the toilet in early June, I went to my general practitioner. After several tests I was referred to a GI doctor. The GI doctor preformed a colonoscopy in July 2012 which revealed that I had UC from my rectum to 10″ into my sigmoid colon.

Some more about me:

I am very active in the cycling community in my town and ride in as many charity events that I can. I am also an avid golfer, try to play every weekend with my friends (living in Florida I can play year round). Having UC has impacted my activities on several occasions. I had to take long golf cart rides back to the clubhouse or make detours on the bike to stop at a convenience store for a bathroom break.

Symptoms:

I am currently experiencing cramps, back pain and loose stool. This is an improvement from January.

Colitis Won’t Keep Me Down

I started taking 2 Lialda in July and remained in remission until December 2012 when all hell broke loose. Between 12/31/12 and 1/19/13 I lost 38 lbs. I was going to the bathroom upwards of 25 times per day and lost my appetite. The cramps that I experienced I would not wish on anyone(my wife still can’t believe how bad they were). I progressed through 4 Lialda per day and 60mg of Prednisone (which I discovered that I hate with a passion) with no relief or improvement. In January I was told I needed to progress to a biologic treatment. On 1/6/13 I did my blood work in preps to start on Humira. My doctor called me on 1/8/13 to inform me that the blood work revealed that I had elevated liver function numbers and I could start the Humira until the liver numbers were back to normal. He feared that I may be experiencing liver failure.In the next 4 days I did an ultrasound, Cat scan, and a MRI to check my liver. All tests revealed that my live r function was fine.

I got a referral to the Mayo Clinic in Jacksonville,FL but my appt. was not until 2/13/13. So, I was stuck to suffer until that appt. My cramps became so severe that they were lasting up to 30 mins and come on every hour. I asked my doctor for something to relieve the pain and got prescribed Bentyl. The helped but did not eliminate the cramps. My visit to the Mayo clinic was great the doctor I worked with made the determination that the cause of my high liver function numbers were due to a viral infection and that I should proceed with the Humira. He advised that he would consult with my GI doctor at home. I started the Humira on 2/25/13. It is now 5/2/13 my Colitis symptoms are still around minor cramps and some loose stool but, the side effects from the Humira are kicking my ass. I am experiencing muscle pain in my legs, fatigue, and back pain.
My family and employer have been very supportive over the last few months. I have been able to work from home and I have only missed 4 days of work due to doctor appts.

My GI doctor has advised if this works I will be on it for the rest of my life based on my age and past flare ups. The long term effects of Humira are somewhat concerning to me. I am concerned that the Humira is not going to work and my next step will be a surgery (which I don’t consider and option for me). Any advise on other options to try would be greatly appreciated.

Medications:

Past Meds
Lialda worked for me for the first 5 months
Perdisone- I will never take this stuff again I am still getting over the effects of it
Rowesa Enemas- worked for a few weeks but, I got tried of cramming those things in my butt
Cannas Suppositories- same as the enemas
Current Meds
Humira- To be determined if this is going to work. The side effects from it suck. The muscle pain and back pain that I am experiencing make it hard to get moving in the morning or if I have been sitting for longer than 1 hour.

written by Freddie

submitted in the colitis venting area