Our UC Story (Long)

Hello all...

I am mom to a 13 year old son who was diagnosed last June with Ulcerative Colitis. I thought I would post about our experience because it helped us so much to read about others with this disease and what they did to cope with it.

My son came to me in the Fall of 2007 with a little blood on the toilet tissue and was a little worried. I said it was probably nothing, but that we'd go to the doctor anyway, just to be sure. The doctor said probably just a fissure...

In May of 2008, I saw a tiny bit of blood on his underwear. I asked to see his next BM, and was horrified to find that he had big drops of blood on top. We were sent to a Peds GI doc who put my son on Miralax for a month. He really thought it was a fissure, as well, since the bloodwork showed no anemia, Sed rate normal, no growth delays, and my son feeling pretty well. The only symptoms were a little diarrhea and some blood coated stools.

After a month and no improvement, we went for the Colonoscopy. The result was chronic inflammation continuous from rectum up through sigmoid colon and not sure how far up the left side. I'll never forget the doctor coming out and saying, "This is not good news." The doctor was fairly certain it was UC versus Crohn's due to the contiguous pattern, as well as the fact that he was able to get the scope into the terminal ileum which looked normal (and was biopsied and found to be without any abnormality).

After the pathology report confirmed the diagnosis, my son had an upper GI with small bowel follow through, which came back normal.

He was started on Asacol. After 2 1/2 months and nothing improving, the doctor added Flagyl for a couple of weeks. I was a little concerned that some of the Asacol pills were coming out whole in his BMs. The doc said this was normal and not to worry, but I was sure that since the pills were rock hard and unbroken, that the Asacol was not doing it's job! I asked for Colazal because that is supposed to be dispursed lower in the colon (and didn't require a certain pH for the shell to be broken). I don't think our GI doc worked too much with that medication, but he agreed and wrote the prescription.

We got the generic form of Colazal-750 mg three times a day. He was on this for 2 1/2 months with no change. No worse, no better. I then added VSL#3 1 packet of unflavored powder in a container of yogurt a day. Also started him on a metamucil wafer a day.

After another couple of months of no improvement, I switched him to the brand name Colazal. I think at that point, one of the peds GI docs was ready to start the immunosuppressants. Since my son is feeling fine, I talked with him about risk versus reward, and I asked about rectal meds and pushing up the dose of Colazal. He agreed to up the colazal to 5 a day. We started on Cortifoam every other day. This led to a dramatic improvement. After having had blood with every BM for 8 months straight, he now hasn't had blood for about a month and a half.

Today we had an appointment with the GI doctor. This is the first time since diagnosis that we were able to report "No blood and going once a day." It has been a frustrating process, and I know that things can change, but am thankful to find that he has had some response at last. I was weaning down to every third or fourth day on the Cortifoam, but the GI doc doesn't want to rock the boat for now and go any lower on the Cortifoam. I also asked for a prescription for VSL#3 DS so that it is at least somewhat covered by insurance. I don't think our GI docs are pro-probiotic, but he agreed to write the rx anyway. So, for now, this is what my son is on:

Colazal 750 mg 2 in am, 2 in afternoon, 1 at pm

Cortifoam once every second to third day

VSL#3 1 packet per day

Metamucil wafer, one per day

As far as diet goes, I kept a log for the whole summer and didn't find anything that seemed to hurt or help the situation. He possibly has a bit of a reaction to too much chocolate (more blood in stools afterwards). It seems like the couple times he's had a cold, he's been a little worse.

We've really been pretty lucky with the way he's felt with all of this, and I know part of it is that the UC is confined, at least for now, in the distal portion of his colon. It's the uncertainty of this disease that is hard to live with...You just never know, do you?

Thank you all for all of your postings and for sharing your knowledge---it has helped us so much to sort through all of the treatment options to try to figure out what might work...

Jo

Thanks for sharing your story. I hope the meds keep on improving and that someday there is a cure.
I was diagnosed a month after my sixteenth birthday. I am now 63.
My UC came on suddenly and the diagnosis took a while (no colonoscopies where I was back in 1961). And drugs were limited.
I spent a month in the hospital and six blood transfusions late, my parents got the news of what it was. Even though they were told it was serious and chronic they were relieved because for nearly a month no one knew why I was losing weight and blood.

Hearing your story makes me think of my parents, long gone now, and the emotional stress for them

For your son, support is so important and his need for a positive outlook.....and feeling good about himself. I think this disease can really make young people feel embarrassed, unsure of themselves. Again I was lucky to have had a supportive family. I finished high school, went to college, and became a teacher and taught for 40 years.

For me, my worst years were from 16 to 30 but at that time the meds were limited and the thought was a bland, no roughage diet was the answer. In my thirties I got a new doctor, went back to eating fresh fruits and vegetables and I seem to do better. Now I have mild flares occasionally. I exercise and encourage all UC patients to keep active and eat healthy.

Like your son, the only thing that really seems to bother me is too much chocolate. But I rarely eat fast food, and I limit processed foods.

Again thanks for sharing.

Jjc2007-

Thanks so much for your reply...It helps to hear from someone who was diagnosed early, like my son, and who has lived a full life.  Really, I got tearful (in a good way) just reading your response.  Getting the diagnosis was probably the hardest thing I've ever had to deal with.  Of course a parent's worst fear is any illness in their child.  I lost 20 pounds due to the stress of it all.   I made sure to have my game face on during all of this so as not to worry my son.  I am so proud of him.  He started this all not even being able to swallow a pill, and now swallows the Colazal horse pills with ease.  He doesn't complain when he has to go to the doctor, or get blood drawn, even though I know he is nervous about it.  I try to make sure to tell him how proud I am of him...But we all know if I could, I'd do it all for him. I'm glad your parents were supportive, and I'm sure they were proud of you for dealing with all you had to deal with, as well...Thanks so much....

Jo 

Jo,
I can really relate to the situation because i was very young when i was diagnosed and remember very little as my mother was the one dealing with the whole situation for me. I wish you the best and i highly recommend staying staying away from the immunosuppressants for now as he is very young. good luck

gutsy123,

You were young when you were diagnosed...I hope life hasn't been too terribly hard for you.  You sound like a mature guy---probably had to get that way early to deal with all of this, huh?  I think I read that you have a c-scope tomorrow?  Best of luck with that....Let us know how it goes.

Jo

I am also very sorry for anyone who has to deal with this at a young age.  I hope that his school is aware of the situation in case he needs help.. if he is back at school? I hope so.

One little thing.  The ASAcol often appears to be whole in the stool, but it is only the shell of the capsule.  This is very common whether you are flaring or not.   The medicine inside the capsule has been absorbed but the outer shell passes thru for whatever reason.