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my child is not starting Remicade Friday, considering surgery

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Ulcerative Colitis
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Posted 9/15/2010 3:30 AM (GMT 0)
nervous mom here... weighing the options and possible outcomes.

chris just turned 5. had a colonoscopy earlier this week (his second, first was at 2). upgraded from moderate colitis to severe pancolitis. been on the max doses (for his size) of pentasa and imuran which are no longer effective. flares every 8 months or so. currently on his 4th or 5th go on prednisone and as you all know we don't want to keep doing that. so Friday we will start the remicade. we've been reading all your posts so we know basically what to expect at the infusions, and that it has a pretty good chance of working for him. however, we (his father and i) are still terrified about the possible bad effects it can produce. we're also starting to think about colectomy since the GI says that's our next step if the Remi fails. the pictures of his colon showed it to be completely ulcerated. The Gi said the Remicade has about a 90% success rate. we want to give the Remicade a try but are having trouble deciding if the risks of him developing some sort of fatal cancer is worse than risks involved in the surgery. just looking for a little input from some of you who have dealt with this.

{the title of this post was edited. we added the "not" to reflect our decision not to start our son on the remicade}

Post Edited (Chris'sColon) : 9/18/2010 8:13:22 AM (GMT-6)

Posted 9/15/2010 3:43 AM (GMT 0)
You obviously need some expert advice. I can only tell you what one of my questions for the doc would be. I remember a time when my young son had a growth under his tongue. The physician (who was also a dentist) mentioned that it would be better to wait until he was a little older if possible before surgery (he was 6 at the time) since the risk is lower. I would try to get a feel from the doc what is less risky, using remicade to buy time till he is a bit older, or doing the surgery right away.

In the end my son ended up not needing surgery because the growth disappeared on its own.

I hope all goes well for your son. Ask a lot of questions and try to find experts who have had experience with such cases. Someone posted a link to a website for parents of children with IBD. If you go back a few pages in the forum, you should be able to find it. I'm sure you could find fellow travelers there.
Posted 9/15/2010 3:52 AM (GMT 0)
the GI said that if it were her child she would try the remicade first, but that surgery is our next step. i asked about surgery in children this young and she didn't seem to want to wait until he got older, just wanted to try everything else first, but did say the good thing about children is they heal from surgery faster than adults.
i looked at the parents of IBDer's site and found it hard to navigate, but i think i'll try posting there too.
thanks for your response.
Posted 9/15/2010 3:52 AM (GMT 0)
there are some parents here who have gotten surgery for their children, and shaz, if she comes by here, had surgery when she was 10 and is very happy with her parent's decision.
I can tell you this, when my son was about 3 or so, we had a scare where we thought he may have the beginnings of UC or something like that, and when we thought that i looked at my husband and i said, there will be no drugs, there will be no waiting and trying, his colon is coming out. And my husband agreed. We had planned if that is what was the case, he would have a bag and be left open for a jpouch to make the decision when he was older. Was that extreme? maybe, but i didnt want him to suffere like i did and take dangerous meds for years and years.
I really hope you can find something that works for your son.
Posted 9/15/2010 4:05 AM (GMT 0)
at this point surgery does not sound extreme. i don't want him to suffer for years with painful flares only to have to have his colon removed anyway, then have to suffer the longterm effects of the drugs which could be worse (fatal) than the UC itself. i just wasn't expecting to already be at this crossroad.
Posted 9/15/2010 10:20 AM (GMT 0)
Hi,
I'm in the same boat as you, as my daughter was diagnosed with pancolitis last year. We have tried some meds - a couple of courses of pred, pentasa, sulfasalazine, enemas, various diets, supplements etc. We are at our wit's end and are very very worried about immunomodulators in a child so small. My daugther's first Gi felt there was no problem with imuran and that the risks were small. Her current GI, who is considered the best pediatric Gi in the country, feels she is too young for imuran as her immune system is still developing and it is not safe. She wants to do a year and a half of low dose pred! So, we're stuck and did inquire about surgery as I too am more worried about the long term side effects of the meds than of that (perhaps this is not the case). Her GI felt she wanted to try the pred first, as this seems to be her signature treatment. So, we've taken her out of medical protocols all together, which is extreme but we feel we need to try everything before going there.
My advice to you would be to try the SCD diet, start slow and try it with the meds. If it works, maybe you can come off of remicade and go back to the lower meds or go off of them all together. It takes work but if it works for you, you've found your ticket out of this nightmare.
Good luck and keep us posted.
Posted 9/15/2010 10:25 AM (GMT 0)
It's completely normal to worry--I'm much older than your son and have been on Remicade for over two years, and my parents still worry about Remicade long-term effects.

I think the people who have developed cancer on Remicade were on 6MP at the same time, or previously had cancer to starting Remicade and it reappeared. In my experience, GIs will always recommend Remicade first and surgeons will recommend surgery over Remicade.

My reasoning is to try everything I can before surgery, that way if the surgery isn't completely successful, I can't regret the decision thinking that I should have tried this or that beforehand. Of course, this is tougher for you since you are making a decision for your child...and ultimately, it is your decision.

Does Chris know about/understand the infusion? Give him a hug for me, okay?

Posted 9/15/2010 11:45 AM (GMT 0)
chris understands that his new medicine will be taken at the hospital every few weeks and that it involves being poked and sitting for a while. he just wishes he was normal.
Posted 9/15/2010 1:20 PM (GMT 0)
Having what I have been through, and if I were a parent, I would opt for surgery.

Remicade scares the bejeezus out of me and I am grateful it wasn't around when I opted for surgery. Your son is young but certainly not the youngest to have had jpouch surgery. I would recommend that you get a consultation with an expert pediatric colorectal surgeon. If you have to travel it will be well worth it. If you want to talk with another parent who had to make this decision on her 9 year old (he's now 19 and in college) go to www.j-pouch.org and ask for Connie. You can also get surgeon recommendations there too.


Sue
Posted 9/15/2010 1:59 PM (GMT 0)
This post brought tears to my eyes. I can't imagine what you are going through. I'm on remicade and it scares me. I've been on it since July 2009 and my whole colon is affected and it is severe. I have a hard time with UC. I can't imagine a five year old boy. I guess we can't make that decision for you but I would be scared to put him on remicade and of the surgery. I know the risks are higher in kid and young adult males. Surgery comes with it's own risks. I guess you have to think about will you be okay with him being on remicade long term because if it works they won't want to take him off of it. If you try it maybe it won't work and then your decision is made. They will probably want to try humira or a trial drug before surgery. This is my experience with my GI. i would talk to a surgeon and know all my options with that. It is your decision even if the GI wants to try the drugs first. He is going to suffer with this for the rest of his life. He is only five and so severe already. Maybe surgery is best. If you put him on remicade will you really be okay with that for 3 months or 5 years or will you be so worried you can't take it? I will keep you in my prayers. This makes my stomach upset and this just isn't right for a five year old boy he should have a normal life. I'm so sorry you have to deal with this.
Posted 9/15/2010 2:27 PM (GMT 0)
thanks for all the responses. i'm leaning more toward surgery and gonna call the GI for a referral today so that we can better understand that option. if i were deciding for myself i'd go for the surgery, but it is a lot harder to decide for my baby.
Posted 9/15/2010 2:47 PM (GMT 0)
Hi. I am so torn by your post. I am the mother of a teenager that I watched become so ill with UC over the course of 2 years. We are very fortunate to live in Toronto Canada and have access to the best GIs and colorectal surgeons in the country. At Sick Kids Hospital, in Toronto, they will not give 6-mp and remicade at the same time to pediatric patients. There have been cases (although only a few) in the States where kids, while on both drugs at the same time, developed lymphoma. I am torn because I hate adding stress to your worries but I would get another opinion concerning remicade. I am in full agreement with Suebear that it is worth travelling to get the very best doctor that you can gain access to.

My son never was on 6-MP or imuran and did try remicade. It worked a bit for him but over the course of a few months he made antibodies to it and we stopped the infusions. Our GI said that for UC this is actually fairly common and why some doctors will give imuran at the same time...to lower the immune response against remicade.

As we watched him get sicker and sicker the decision for surgery was made and although it was a long and bumpy road it has completely restored my son's health. In retrospect, I am so happy that we HAD to stop remicade and go to surgery. He is completely off all medications, has every blood test coming back completely normal and is living life exactly the way a teenager should. Our surgeon, at our initial meeting, while the remicade seemed to be working, stated that in her opinion, he would need surgery within 5 years anyway and that she did not want to see him on these drugs. Even our GI said, again while the remicade seemed to be working, that he would like to see my son off of all these drugs and have the surgery.

I actually ache for you and know how difficult these decisions are.

I wish you all best and if I can answer any questions you might have concerning our journey I am happy to answer.

Cathy (and Dillon)
Posted 9/15/2010 2:54 PM (GMT 0)
I don't know where you live or if your insurance would cover it, but Mayo clinic in Rochester, Minn has some of the best colorectal surgeons in the country. The trick would be to find someone who has a good track record with pediatric surgery of this sort.

Keeps us posted if you could. We will all be hoping and praying for the best outcome for your son.
Posted 9/15/2010 3:30 PM (GMT 0)
I don't have anything to add, but I just wanted to give you a big hug, and let you know that you are in my thoughts!
Posted 9/15/2010 11:39 PM (GMT 0)
thank you all for your quick responses and support. it really means a lot to me. i'll be sure to keep you all updated.

-veronica
Posted 9/16/2010 3:47 AM (GMT 0)
http://www.gastroendonews.com/index.asp?section_id=373&show=bench2bed&article_id=15781&ses=ogst

Has your doctor tried any different 5-asa medications?

My heart aches for you.
Posted 9/16/2010 5:52 AM (GMT 0)
    This is Chris' father.Yes Chris  has already been taking 4 pentasa(5-asa) capsules a day for 3 years.

    We are currently researching the remicade more...but are having trouble deciding if the risks of him developing some sort of fatal cancer is worse than risks involved in the surgery. and going to meet with surgeon for evaluation of the situation, of course we are worried like any parent would be and want to make the best decision for our 5 year old.

    The imuran and pentasa together for about a year now. Prenisone about 4 or 5 different times over 3 year period. It is pancolitis now. We just want him to live a life of not having to depend on dangerous medications. I probably repeated some things my wife already stated.

    Does anyone know much about the medications or the duration of meds he would have to take say after a colectomy?

Thank you so much.

Post Edited (Chris'sColon) : 9/16/2010 7:58:18 PM (GMT-6)

Posted 9/16/2010 1:19 PM (GMT 0)
If sugery is selected your son can come off the 5ASAs and immunosuppressants immediately. If he is on prednisone at the time of surgery or in the past year, he will be tapered off of that after surgery. I am 9 years post surgery with a jpouch and I take no meds. In the early days of recovery I used lomotil and or imodium to slow my system but over time the jpouch learns to behave like a colon and adapts. Some use lomotil/imodium for life (no harm) and others like me only on occasion (1X per year while long distance hiking). He should not need any other UC meds post surgery unless the surgeon leaves the rectal cuff in which case he could still get UC of the cuff. It's easily treated with UC suppositories or oral meds. Ask the surgeon about a mucosectomy, rectal cuff stripping. Mine was stripped and therefore I have not had cuffitis. It takes a surgeon with boatloads of experience to do that additional procedure.

The one plus you have in your corner is that your son is quite young and he will adapt quite well. I know this must feel overwhelming and scary, to have to make these decisions for a child. Again, find a top notch surgeon; if you have to travel do so. I traveled 2 hours to have my surgery by the top west coast surgeon and I credit him for the success. If you need help finding a surgeon go to www.j-pouch.org

Sue
Posted 9/16/2010 1:31 PM (GMT 0)
To Chris's parents, I had posted above and I don't know what your comfort level is re: alternative and dietary therapy, so if you are not interested I apologize for posting again. As I mentioned, we are weaning my daughter off of sulfasalazine because it was not working. Last week, she ate some seeds which cased a massive flare, her worst since diagnosis (she too has pancolitis). We have already tried many many diets (scd in various forms), 3 Chinese herbalists, an acupuncturist, various liquid diets, consultations, supplements, vitamin e enemas etc. Nothing was working. Last week's flare looked like it would require hospitalization. She was losing blood very quickly and going 12-14 times a day, liquid stool, sometimes just blood. We have, like I'm sure you have, done a TON of research and I have armed myself with books and herbs etc to try in case of emergencies. It is now a week since the flare stared and she no longer has d, has 0-3 soft formed stools a day and is healing (it is very early days of course and I'm scared of writing this as I don't want to jinx myself so fingers crossed but since I know the hell of the situation you are in I thought you might be interested). So, if you're interested in what we are doing please email me (I'm not selling anything don't worry).
Regardless of what you do decide, I wish you strength and your son great health.
Posted 9/16/2010 2:00 PM (GMT 0)
Hi -
I just wanted to say I've been reading all this and - I empathize with you. It's horrible to have a sick kid, worse than being sick one's self.

I consider myself lucky that my son didn't develop UC until he was 13... well, wasn't diagnosed until then, anyway and although it was severe pancolitis at that point, it's been very quiet since and it has responded beautifully to lower-level meds.

Keep us posted on what you decide. It's a huge weight of a decision to have to make on behalf of someone else, and someone so young..... I'd likely opt for the surgery. (I'm saying this but I have not done the research in regard to a young child.) But, the idea that he would be able to recover and enjoy his young life better, and he'd adapt to being without a colon as a normal part of his life....sounds very tempting, from the psychological aspect.
Do follow up on Suebear's suggestion at jpouch - I hope you can find some additional help there.

Keep us posted - you are in my thoughts.
Posted 9/16/2010 3:41 PM (GMT 0)
our son will NOT be starting Remicade on Friday, or ever. Holy Cow that stuff is scary! our pharmacist printed us out some info from some clinical websites, that would be difficult if even possible for laymen like us to even find, and the stuff we were able to find ourselves regarding the Remicade doesn't even brush the surface. i emailed his GI this morning that we aren't comfortable starting the Remicade and would like to consult with a pediatric surgeon. waiting on a reply. our income is very limited and the children are on medicaid (thank you taxpayers!) so i don't know what our options are as far as finding the best surgeon and travel, but we will do our best to give our son the best chance at a normal life and cross all of those bridges as they come. i feel like surgery is the best option for chris and that anything else is just postponing the inevitible. i was actually able to fall asleep last night without a billion worries for the first time in a while.

thank you all for your responses, they've been invaluable in helping us come to this decision. i'll be sure to keep you updated. also the J-pouch.org website was a great help.

Posted 9/16/2010 4:39 PM (GMT 0)
I can't imagine too many hospitals turning away a 5 y.o. boy in need of medical care because you only have medicaid. I would burn up the phone lines checking my options.

Do you mind me asking what state you live in? Your options will likely depend at least partially on that.

Post Edited (C_G_K) : 9/16/2010 10:56:03 AM (GMT-6)

Posted 9/16/2010 5:01 PM (GMT 0)
i don't think anyone would turn us away because of medicaid, i'm just not so sure about medicaid's rules on how far they're willing to go. one Dr. is as good as any as far as they're concerned. i just need to do some searching and calling to find out what their limits are.

we are in southern Alabama and would likely be using the university children's and women's hospital here. they have a good reputation around here and i trust that they wouldn't kill him.

Post Edited (Chris'sColon) : 9/16/2010 11:10:03 AM (GMT-6)

Posted 9/16/2010 6:12 PM (GMT 0)
I would go for the surgery. For myself, I wouldn't do the big gun meds...once the 5ASA oral/rectal stops working for me, I'd prefer surgery over the immunosuppressants or biologics. That's my personal preference...
but if it were my child, I'd choose surgery given his age.

It would be inevitable that he'd need surgery..eventually. Now is better.

quincy
Posted 9/16/2010 7:57 PM (GMT 0)
after surgery he wont need any meds at all. Like suebear said, sometimes i might take some immodium, like if im going on a long car ride and don't want to empty, or take some gas-x if i know im going to eat something that causes alot of gas.
I think you are doing the right thing by not doing the remicade.
I think, that your son will be very happy with surgery, honestly, he will be happy to just be healthy and not be sick anymore!
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