my child is not starting Remicade Friday, considering surgery

We'll look into it, thanks.

good info, thanks.

I believe and I need to double check this but Remicade was banned for pediatric use in Canada until relatively recently. The risks of cancer from Remicade are higher in children and this is a drug that has only been in use for 20 years or so, so there's no predicting what the long term effects might be. My daughter's GI feels surgery is a suitable option to Remicade. If it were me, I would likely make the same choice as long as crohn's has been ruled out as much as it can be. Have you looked at dragonpack - the website for parents of children with IBD? You might want to post on there, most if not all of the kids on the site who have had surgery due to UC are doing very well. You may have complications and you might want to post on there, those parents know there stuff and are very supportive.

Everything you have indicated is true; those of us who have had surgery for UC the majority are very happy with the results, be it jpouch or permanent ostomy. I think you are making the best decision for your son.

Sue

haileys letter: i've read your daughter's story before. i can't even imagine what you must have gone through at that time. thank you for sharing it with us. we should all look in many directions to find our answers.
Chris' colitis seems to be a pretty cut and dry case, even with the early onset. i saw the first specks of blood at around 2 months. his pediatrician said it was normal capilary busting due to straining. sounded reasonable except that he never strained, it always just came right out. he was strictly breastfed for the first 6 months and i continued to breast feed him for 2 years. the less he nursed the worse things got. his pediatrician kept telling me he was normal, or he must have some little stomach bug, or maybe it was something he ate. we ran stool and blood tests and all came back clean with the exception of a little anemia. At age 2 he'd never had a solid bowel movement and was painfully pooping horribly foul smelling blood and mucous 4-6 times a day. finally one day the nurse called to tell me his results were all normal and when i asked her "what do we do now" and she responded with "well, what do you mean", I gave her a piece of my mind and got him a referral to the GI. The referral said "occasional loose stools." i can understand what it is like to feel like you're talking to a wall. They made him an appointment for about a month later. about two weeks before his appointment he was pooping pretty much just blood and mucous about half the time so i called the GI and begged them to see him sooner, so they squeezed him in with the RNP. luckily when we got to his appointment he had a bowel movement in the waiting room and i had enough forsight to hang onto it to show them. the RNP and GI have been great in caring for my son. he had a colonoscopy the next day followed by barium xrays of the small intestine. his first scope determined "moderate colitis" and he was put on short term prednisone and pentasa. it worked for a while with just occasional hangups here and there depending on what he ate mostly. he flared again within 6 or 8 months i think because of an antibiotic, prednisone again and upped the pentasa. good for a while then another flare, prednisone, pentasa and much to my dismay started imuran. good for a while then another flare, prednisone, again, and double the imuran. then we've been doing alright for about the last year. this summer he started to flare again. he was already taking the max doses of pentasa and imuran, a children's multivitamin, and adult doses of culturelle and fish oil, plus a limited diet. comparing the most recent scope "severe pancolitis" to the previous one, i'd say the disease has progressed to at least 5x's worse than just 3 years ago. i do think that the remicade would work for him, for a little while, but i cannot sleep at night knowing i'm poisoning my child (sorry for the blountness) to treat the causes and/or symptoms for a little while longer, when there is a cure for his disease. i also know that the chances of the surgery being very successful depend on many factors. health of the patient, health of the affected organ and whether or not it is an emergency play into this. right now we have these things on our side, but for how much longer?

i'm not saying that 100% surgery is the end all be all for us, and i am absolutely looking into everyone's suggestions, but it is definitely one of the main paths i am exploring at this point. it's looking like Chris' best option.

i can't tell you all enough how much your input and support means to me, of course you already know because you've all needed and been there for eachother at some point. i hope to be able to give it back.

 

   I am sorry for everything that your son has been through.  It breaks my heart.  

I support any decision you make for your son.  I just wanted to make sure I posted Haileys story, because the antibiotic did make her better for 4 years, which has brought her alot of time.

 

 In  those 4 years I have learn more about Uc and have read other options that they are 

using to heal the colon, ( fecal transplant) being one, and the low dose Naltrexone being another. How updated is your son's doctor on clinical trials? Are they presenting these options to you? Have they ever tried the Flagyl?

 I would make a list of any questions that come to your mind and just ask, ask , ask, about all of these things. Healing well is a great place to be , because we all have experiences that are different in many ways, but we all want to help each other and support one another.

 I will keep you in my thoughts and I support any decision you make for your son.

Just wondering...were you on antibiotics during pregnancy/labor, or was your son on antibiotics at any time before his symptoms appeared? What diets have you tried. I'd be inclined to try something like the SCD before getting surgery. I am feeling so bad for you and your little one. Unbelievable story. I pray you will find the answers you are looking for. Lots of good advice and support here on this forum. God bless you and your son.

Kim123: i was on a strong antibiotic when he was an infant, but i stopped breastfeeding him while i took it and for a few days after, and in hindsight he had already shown some signs before that. antibiotics have triggered flares in him, however, so we steer clear of them unless absolutely necessary. he also has started a flare after having a little cold, and other times out of the blue with no obvious trigger.

thanks summerstorm. i didn't mean stuck with a bag to be offensive. i'd much rather him have an ostomy and be otherwise healthy, rather than cancers and deformities by trying to save the unsavable. I do mean in our case, i can't speak for anyone else.

no i didn't think you meant it to be offensive, i'm sorry if it sounded that way.

Is there a possibility the antibiotics you took while nursing may have had an effect on his health? Were you on any while you were pregnant? The reason I ask is because there can be a fungal etiology to UC. Antibiotics are mycotoxins (fungal poisons)and mycotoxins are known to cause disease. As well, does your house have mold or has it ever had water damage? Does your son have other health issues...i.e. skin conditions, asthma, chronic sinusitis? Does he eat/crave a lot of grains like corn, cereals- known to be commonly contaminated with mycotoxins, processed foods high in sugar or carb content? What does he typically eat?

I'm just trying to think of other possibilities and areas to consider for his illness, fungus being one of them. There are over 400 kinds known to man. I have read of those on Healingwell who have been helped with diets such as the SCD, the Maker's Diet, even when for some (Crazy Harry on Crohn's forum), surgery seemed imminent. Myself, I discovered only by experimenting with an antifungal diet and getting well that my UC symptoms were fungus-rooted. I don't know the severity of your child's illness, and maybe surgery would be the best thing. But, I'd be inclined to leave no leaf unturned before making that decision....the reason why I bring up fungus. Just throwing my 2 cents into the ring.

Kim123: i suppose it could be possible that the antibiotic i took when he was an infant could have kicked his UC into gear or that it could have been due to some sort of fungus as we live in a very humid climate, however we have had colon problems (even Crohn's a few generations back) on both sides of the family, so it's not a far stretch to link it to that. He is otherwise a healthy normal kid with no other issues that can't be directly related to the colitis (anemia, slow growth, etc.).
There seem to be lots of possible causes for this disease and lots of possibilities for treatment with varying degrees of outcomes, all on an individual basis. lots of people have experimented with lots of things and many have found some relief. regardless of the cause or various treatments, so far there's only one cure. with the extent and seemingly rapid progression of his case i don't think we have much time for experimenting. i also know that elective surgeries tend to have better outcomes than emergency ones, and have read that 25%-40% of UC patients will eventually have to have their colon's removed anyway. i'm researching every bit of info i come across, and if anything comes close to what the surgery could offer we'll put that on hold and give it a try.

Collicat: i really feel sort of greatful for chris that he developed this at such a young age(well really i wish it would have waited another 60 years or so) rather than as a teenager/young adult. teens and young adults already have enough phisical and psychological and social issues to deal with, and adding a disease like this is really quite cruel and unusual punishment. chris has never known any different. he understands that most other kids don't have what we call "the pooping problem" but it was not some drastic life change for the worse. also i feel really positive that we can perhaps get this problem all worked out before it really starts to interfere with with his physical, emotional and social development.

i just wanted to add again that we really appreciate everyone's input, suggestions and support. it really is a blessing to know that there are so many people that though all are complete strangers, genuinely care for the wellbeing of my child.

thanks from the very bottom of my heart,

veronica and donald