Surgery v Remicaid

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Mom of sick little boy
New Member

Date Joined Mar 2009
Total Posts : 4
   Posted 3/24/2009 3:18 PM (GMT -6)   
Hello, I am new to the forum and I hope someone can help me.

My 10 yr old son was diagnosed with UC May of 08. He did not tolerate Pentasa, the Rowasa enema or Asacol. He has been on a roller coaster of Prednisone going up and down between 40 and 20 mgs per day. He was put on 6-MP in Aug 08, by Dec I was able to wean him off the Pred for about 6 weeks before he started flareing. He was put back up to 30mgs of Pred and his 6-MP was raised from 50mgs to 75. He still wasn't doing well and his liver numbers were going up so his dr. dropped his 6-MP to 25gs and added in 50 mgs of Allopurenol while still dropping the prednisone. This combo seems to be working except he started having severe stomach pains along with the skin all over his body to tender to even touch. If he can't tolerate the Allopurinol our options are dwindleing. Remicaid or surgery? To have to worry about the possibility of malignancy, even possibly an incurable malignancy, I think is not worth it. I have really struggled with the thought of surgery, over the past year, as a last resort option. At this point I am leaning heavily toward surgery.
I know this has been wordy but I am hopeing that I can get some additional insight from someone else.

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Date Joined Feb 2005
Total Posts : 6447
   Posted 3/24/2009 3:39 PM (GMT -6)   
Hello Mom of sick little boy and welcome to HealingWell. I'm sorry you had to find us because your little guy is so sick, but let me give you a website that might help - It's a website for parent's of young ones that have chronic illnesses. We've also had quite a few members that are younger and have opted for surgery, and some that are still doing well with meds. Maybe they will pop in and give you some help with your questions. I've been on Remicade for quite some time, and it's helped me very much. I'm wishing you well with your little one; we always feel so bad when your child and you have to deal with this dreaded disease. Take care, let us know how you and your little guy are doing.


Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
Co-Moderator for the UC Forum

Post Edited (Lonielane) : 3/24/2009 3:42:54 PM (GMT-6)

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/24/2009 3:41 PM (GMT -6)   
well i had UC and i went to the GI and i asked for surgery and he talked me into remicade, and i tried it, but now i wish i hadnt. It didnt work for me, now it does work for some people. But i was told that you need to be on someting like 6mp or immuran for it to work better.
So it worked for a few months then quit workign but even in those few months i constantly was waiting on it to quit working.
So i went for surgery, and it was the best decision EVER!!!

Maybe Shaz will come along, or you go over to the ostomy baord and post for her to answer, her parents had her colon removed when she i think 10 and she is very grateful to them for it.

Regular Member

Date Joined Dec 2008
Total Posts : 74
   Posted 3/24/2009 4:04 PM (GMT -6)   
Sorry to hear about your son's condition.  I have a 9 year old and can't imagine him having to go through what I do.  Although surgery might be in my future, Remicade has been working great for me so far. It's a tough decision, but I'm feeling pretty good now and glad I opted to go with Remicade.  I'm hopeful that remission is VERY close for me.
Diagnosed '93. 
Asacol, Prednisone, Remicade, Imuran

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Date Joined Feb 2009
Total Posts : 7150
   Posted 3/24/2009 4:05 PM (GMT -6)   
I am so sorry to hear that your son is so sick. My heart breaks when I think of kids having this disease. Someone else posted a couple of days ago asking for input on surgery vs. continuing medical treatment, and I had just read the following articles that are on-line for free in the January 2009 issue of Inflammatory Bowel Disease, so posted a link to them. Here they are again...I hope they help.

1. Treatment of choice for acute severe steroid-refractory ulcerative colitis is cyclosporine (p 141-142)
2. Treatment of choice for acute severe steroid-refractory ulcerative colitis is Remicade (p 143-145)
3. Treatment of choice for acute severe steroid-refractory ulcerative colitis is colectomy (p 146-149)

Here's the link to that issue:

All of the other articles in that issue are free, too!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).

Mom of sick little boy
New Member

Date Joined Mar 2009
Total Posts : 4
   Posted 3/24/2009 4:09 PM (GMT -6)   
Thank you all for your encouragement and suggestions. I will definately check out the web sites.

Regular Member

Date Joined Mar 2005
Total Posts : 130
   Posted 3/24/2009 9:35 PM (GMT -6)   
I am debating the same question although it is for myself. Has anyone been able to find information on Remicade or Humira regarding much it increases your chances of getting a malignancy? Also, does your risk increase the longer you use it?

I have searched quite a bit, but not found anything too useful.
UC (Pancolitis) diagnosed in 1992. Medications: Dipentum, Pariet

Forum Moderator

Date Joined Feb 2006
Total Posts : 5698
   Posted 3/24/2009 9:57 PM (GMT -6)   

I'd go with surgery.  Surgery will put an end to the disease and an end to the big gun medications.  Your child is so young and to think he might have to take biologics for years is, to me, well scary.  You can meet Connie at  Her son Thomas had surgery when he was 8.  He's now 16.  There have been a host of other children who had surgery too but their parents aren't around much because their kids are healthy and out being children.  I feel for any parent who has a youngster with this disease.  But having had the disease and opting for surgery myself I can tell you that life on this side of the fence beats life on the UC side by a long shot.


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Regular Member

Date Joined Mar 2008
Total Posts : 30
   Posted 3/24/2009 11:23 PM (GMT -6)   
Hello ,this is very sad that such a young child is going thru this . it sounds like you are not tapering slowly enough off the prednisone. I usualy start on 40 mg and taper off 2.5 mg every week then when I get to 15 mg I taper off 1 mg every week.I do fine untill I get down under 5 mg then I have a flare then back on 40 mg.I am on 100 mg of purenethol which is mercaptopurine, 6 pills of Asacol,1mg of folic Acid,and acifex & my pred I was diag in 2003.Just had my #4 or 5th colonoscopy today.Good Luck my prayers are with you and your son.

Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 3/25/2009 7:11 AM (GMT -6)   

It breaks my heart when I hear of kids that have this stupid disease! I thought it was bad enough to get it at 18, but I couldn't imagine having it any earlier.

I'd go with the surgery. We don't know what the long-term side effects of Remicade are and there's a strong possibility he'll have to be on it for years. Personally, I'm not comfortable being on Remicade long-term, so I've decided to only take it for a year and then see what happens.

If he's doing horrible right now, you might want to get a couple Remicade infusions to make him stronger for surgery.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/25/2009 9:01 AM (GMT -6)   
remicade can make you stronger as in not sick, but since it lowers your immune system so i dont know if that would be good. I had to quit taking remicade before i coudl have surgery. But it wasnt workign for me.

Anyway, the longer you stay on remicade the greater your risk for developing somthing,, and also if you have a family member who had one of the types of cancer it can cause.

Veteran Member

Date Joined Dec 2008
Total Posts : 3231
   Posted 3/25/2009 11:51 AM (GMT -6)   
It is a really hard decision to make, because we don't have hindsight. We don't want to lose our colons, yet we don't know what will happen if we opt for the medicines. Will we have to take medicines that have severe side effects? Will we be on medication for a long time? If so, then getting our colons taking out is better for our bodies. If not, then keeping our colon is.

I know your son is only 10 and may not fully understand the full repercussions of major decisions, but I do think it is important to allow him to make the final decision. It is his colon.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

Mom of sick little boy
New Member

Date Joined Mar 2009
Total Posts : 4
   Posted 3/25/2009 2:52 PM (GMT -6)   

I really appreciate everyones input and concern!!!

His doctor really does not want to put him on the Remicaid because of the potential of malignancy.  We took him to the Mayo Clinic for a second opinion when his dr. started talking surgery.  All along I was leary of the Remicaid but when we took him to the Mayo Clinic, the dr there highly recommended it.  He told me that my daughters had a higher risk of developing breast cancer in their lifetime then he did with taking Remicaid.  This made me feel better until I relayed it to his regular dr to which she replied that yes that is true but..............breast cancer is treatable (of course all cancer is potentially fatal) but one of the types of malignancies he could develop from taking Remicaid was not treatable and was therefore considered fatal.  I asked her how long would he have to take it before I would have to start worrying about a malignancy.  I'm thinking 5-10 years, she told me 1-2 years.  I don't feel it is worth the risk in any way.  There also seems to be so many other non fatal but, never the less, life altering side effects from this drug.  My husband is leaning toward, at least trying, the Remicaid because he is having a diffcult time with the thought of him losing his colon.  I am aware that there can be complications from the surgery but in my opinion ,at the very worst case scenerio, I would rather that he have an Ostomy and know that he isn't going to develop cancer from his medication.  Obviously I realize he could still develop some other horrible diease or any number of terrible things can happen, thats life, but I won't have to worry about this one in particular.  Maybe I am looking at this wrong but I just have a very hard time with this medication.  

I have one other "wonder", why would one dr, from what is considered to be one of the best medical facilities in America give this drug such glowing recommendations when another dr from another very well respected facility not be so gung ho about prescribing it?

New Member

Date Joined Mar 2009
Total Posts : 13
   Posted 3/25/2009 3:11 PM (GMT -6)   
I also wondered that doctor on the day of diagnosis was pushing Remicade. He was saying he would use it if it was his child. I told him about the cancer in my family and interestingly he didn't bring it up the next visit. I am scheduled for a second opinion, but first i don't know if my insurance would cover it now and then i'm thinking its not in the cards for us...especially so soon. Someone told me they get kickbacks from the drug companies and i brought this up to the doc and he just laughed.
Mother of 9 year old with right sided and transverse UC
Diagnosed  2/25/09
Current meds: Asacol 1200 mg three times a day, adult multivitamin, zinc, vit. c, folic acid, B12, probiotics, aloe vera juice when i can get it down her.

Mom of sick little boy
New Member

Date Joined Mar 2009
Total Posts : 4
   Posted 3/25/2009 3:23 PM (GMT -6)   
I really feel for you and your little girl. This is not easy to come to grips with at all. Hopefully the Asacol works for her. My boy could not tolerate any of those drugs that is why he has been on Prednisone so long. The Prednisone helps but it wreaks havoc with their body, moods, temperment, on and on I could go. My boy has gained almost 20 lbs since he started taking it. When he was in remission for those 6 few weeks he lost about 10 lbs. The whole "moon face" thing makes school really difficult, kids just don't understand.

Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 3/25/2009 3:42 PM (GMT -6)   
I've been told that Remicade is okay to take before surgery, as long as it's taken 30 days before the surgery.
I've been to the Cleveland Clinic, the second best GI hospital, and the doctor there told me he doesn't like patients taking Remicade for more than a year. Funny how all these doctors differ...
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