Our UC Story (Long)

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JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 2/24/2009 1:07 PM (GMT -6)   
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


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 2/24/2009 4:07 PM (GMT -6)   
     Hi Jo,
       So sorry your young son has to suffer with this illness.  I was diagnosed when I was 52 yrs old.  He was able to improve without going on prednisone?  That is great!  They put me on prednisone immediately in the hospital through an IV.  Let's hope and pray your son continues to improve and will never suffer another flare.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 2/24/2009 4:31 PM (GMT -6)   
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.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 2/24/2009 5:32 PM (GMT -6)   

Christine1946-

Yes, we haven't had to do oral prednisone yet.  This is mainly because from the beginning, my son has felt pretty well and was only going 2-3 times/day.  He did have blood with every BM-sometimes more, sometimes less, but always there.  At our very first meeting with the GI following the scope, he was contemplating oral prednisone but I pushed a little for seeing how the Asacol worked first.  Thanks to this site and spending many hours researching on my own, I felt confident enough to discuss options with the doctor.  And, thankfully, he's one of those docs who listens and takes our thoughts into consideration...Thanks so much for your well wishes.  I pray every night not only for my son, but for all of you on this site to do well.

Jo

 

 


JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 2/24/2009 5:44 PM (GMT -6)   

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 


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 2/24/2009 7:27 PM (GMT -6)   

Hi Jo,
I'm glad you have found what works for your son. It is very hard to watch your child be sick and not be able to fix it. I think the support that the person who is ill gets is extremely important.
When our daughter (Bratcat) first got sick, we researched, discussed, analyzed, etc. as a family. She is probably more knowledgeable about UC than I am. Her flares were extreme (40+ BM a day) and meds were not getting her into remission. Luckily, surgery has been the answer for her and she is happy and healthy. She recently had to write her college essay for her applications. Originally she didn't want to mention her UC because she didn't want it to be the focus about herself. But a friend pointed out how much she had been able to accomplish even while sick. Writing that essay really opened her eyes to just how strong she really is. (It makes a parent proud even though it is for a crappy situation.) 
Our oldest son was diagnosed a year ago with Crohns (although he had symptoms much longer but didn't tell us). He's 20 so it's really important for him to learn what, if anything, helps or hurts. I think he's getting it. He knows if certain foods will make him go to the bathroom alot the next day or not. He is learning to decide if it is worth taking the chance that one night of fun will bother him for the next few days.

It sounds like your son will be able to face this illness with alot of strength that he has gotten from you.


--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


gutsy123
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/24/2009 7:30 PM (GMT -6)   
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
22 year old male college student in Boston

UC for 15 years

Lialda 2-0-2
6mp 75mg
prednisone 7.5mg and tapering


JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 2/24/2009 8:23 PM (GMT -6)   

Bennie,

Your poor daughter---40+ BMs a day sounds terrible...I'm so glad that she is doing so well with her j-pouch.  She definitely should write about the UC in her college admissions essays-for her to have dealt with all she has and still be graduating and going on to college proves that she has the perseverence to succeed! 

Sorry that your son was diagnosed with Crohn's...Life is not fair, is it? 

I wish you and your family the very best...And thanks for the support...

Jo


JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 2/24/2009 8:29 PM (GMT -6)   

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


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 2/24/2009 9:32 PM (GMT -6)   
JoMarie,

I can somewhat understand your son's situation. I had problems when I was a child since I was about 10 years old. Constipation, and blood in the stool. Unfortunately, I told my mom once, and she was paying close attention to me, and said pay close attention to it and tell me again. When I told her again, I guess it was a bad time, but she kinda pushed me away. So, I left it alone, and delt with it myself. It wasn't until I was 25 when my major flare sent me all over doctor wise to figure out that I had Ulcerative Colitis. Thankfully you caught it as soon as you could. Glad to hear that he's in remission.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


neednewbody
Regular Member


Date Joined Sep 2008
Total Posts : 59
   Posted 2/24/2009 10:33 PM (GMT -6)   
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.
Liver transplant 2004 -- liver is only healthy part of me
Prograf 1mg bid for transplant
 
humira started dec/09
Remicade - stopped - d/c dec/09 
pentasa 1500mg tid
palafer once daily
lomotil every day as needed -- which is basically every day
immodium every day as needed -- which is basically every other day
metamucl with psyllium - once a day
 


JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 2/25/2009 7:51 AM (GMT -6)   

Sweetie31105,

Sorry you had to suffer all those years without a diagnosis...That must have been scary for you. 

neednewbody,

Thankfully my son hasn't had to miss school...He had his colonoscopy last year the last day of the school year (hello, summer!), and has been feeling pretty good this school year.  We work the medication schedule around his school schedule, so he doesn't have to go to the office for anything.  Some school staff are aware of his diagnosis, but luckily we haven't had to make it an issue yet...

Thanks both of you for your kind words...

Jo

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