My Journey with UC

Introduction:

There are a few things I would like to point out.

1) If you find blood and mucous in your stool. It is never normal. Most likely it will not get better and it will not go away. Make a doctor’s appointment.
2) Do not read a lot about diseases unless you know for sure you are diagnosed. You will be wasting your own time and plus the stress is not worth it.
3) Find a doctor that you can really personally connect with. Shop around.

My Story:

I don’t even put anything in there. Why is it bleeding!!! Why me? That was the first thought that came to my mind.

I’m 25 and I have no idea about Ulcerative Colitis.

April 2010
I found blood and mucous in my stool. I didn’t know what was happening to me. I was sure it would go away. Probably, my poop was just big that day- I thought.

May 2010
Why was it still bleeding???

June 2010
I didn’t know if I wanted to go to the bathroom or if I wanted to pass gas. I can’t tell the feeling. What was happening to me?

July 2010
I told my physician about my symptoms and she wanted me to see a G.I Specialist.

August 2010
First G.I appointment. The waiting room was quite empty two 70 something women sitting. I still didn’t understand why this was happening to me.

The nurse assistant called my name. The doctor asked my symptoms. I was very honest and open about all my symptoms. She didn’t even touch me. She said. I need a colonoscopy. She didn’t say anything else. The whole appointment lasted 8 minutes. That was it.

I made an appointment for colonoscopy for the following week.

I came home and spent all night reading about colonoscopy and colon related diseases. I freaked out and felt like shit!

I canceled my appointment two days later!

Sept. 2010 to Nov. 2010
I tried to forget about the bleeding and prayed and hoped that it would go away. I exercised everyday and try to stay healthy but my bowl movement wasn’t regular or my poop shapes looked normal. And the worst was it was hard to tell whether I want to pass gas or go to the bathroom.

Guess what? It didn’t go away. That point, I knew I really have to start taking this seriously.

I met with my Physician again and told her that the blood and mucous were not going away and I wasn’t not feeling better. I kept feeling blotted from time to time And I told her about my bad experience about the first G.I Specialist. She game me a few more names.

Dec. 2010
I made an appointment with another G.I Specialist.

I made an appointment to see her 1st week of Dec. She is very nice. Professional, Intelligent, Experienced, and most importantly she is Sincere and Kind.

She examined me right away and made a comment that it could be hemorrhoids but she really thinks that I should get a colonoscopy.

I made an appointment to get it tested 2 days before Christmas.

They found Hemorrhoids and Severe UC in rectum, distal sigmoid and mid-sigmoid.

WOW! I felt like I was about to celebrate my last Christmas.

My doctor’s recommendations were:

Don’t eat anything excessively. A glass or 2 or 3 glasses of wine is ok.
You don’t have to avoid alcohol or spice.
No special diet for now.
Don’t feel depressed or sad. UC has nothing to do with what you have done or what you have eaten. Just think as “Bad Luck” Find a support group online and you will know that you are not alone. There are lot of people who are going through other diseases and symptoms and UC is not the end of the world. We will get through this together.

She really is my rock. I love my doctor so much. That’s why I’m telling you; if you are around my age, it’s really important to find someone that you can personally connect to. I really don’t like talking my mom in details about my health because everything seems to make her worry and she treats me like a patient.

One more great thing about my doctor is that she’s very generous when it comes to samples.

Jan 2011
Out of all the samples that my doctor has given me; I’ve tried Lialda, Asacol HD, Apriso and found out that Lialda works great for me.

Unluckily, it has no generic and my insurance doesn’t cover. I honestly cannot afford to take this medication. And I don’t feel like spending that much on mediation. What am I 65???

Also, I’m using Canasa suppositories and works great for me. Unfortunately, it has no generic either and it’s super expensive and of course my insurance doesn’t cover it.

Feb 2011
Do I really need these medications? What if I just exercise and eat right?
I could be buying a new LV bag with all the medication cost, doctor co-pays, and testing.

This sucks! Life is not fair.

I bitched and I moaned. I cried and I pretend that everything is ok.

My samples are running low and I had to make a decision.

Either I spend close to $1,600 and get 2-month worth of medication or get an LV purse.

In the end, I found my way out. I decided to order my medication from a Canadian pharmacy.

2-month supply should cost me close to $450. That’s not bad at least.

I closed my eyes and took a risk. I ordered my Rx via Internet from a Canadian pharmacy.

I felt so smart in a way because I can guarantee that most of my friends my age do not know how medications are very expensive in the U.S for people and even people like me who has PPO insurance or even if you pay cash. If I may add, what a crazy place we are living in? A country with a health system run by drug companies. GRRRRR…

March-2011
From trail and error I also found out that my suppositories works the best for me. Without them, my UC flares up within 3 to 5 days. May be because my colitis is closer to the exit.

Today my Rx arrived from Canada. Woo Hoo!

I got Mezavant Canadian equivalent of Lialda also distributed by Shire and Salofalk Canadian equivalent of Canasa.

So, I will be taking them until my next doctor’s appointment.

I will be posting my experience and my story here.

My doctor is right. UC is not the end of the world. There are a lot of other people suffering worse diseases and symptoms.

Stay healthy! And Cheer up! You are not alone.

Thank you for reading.

I graduated from a Cal State but I know I’ll be a great UCgrad.

And Adam, I sincerely thank you.

Kind Regards,

“UCgrad”

Current Medications:

Lialda 1.2g 2×1 daily
Canasa 1000mg 1 nightly
Currently using Mezavant Canadian equivalent of Lialda also distributed by Shire and Salofalk Canadian equivalent of Canasa.