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My sons crohns story. Now remicade??

Start remicade or stay on 6mp oral

  • Remicade

    Votes: 1 100.0%
  • 6mp oral

    Votes: 0 0.0%

  • Total voters
    1
My son was diagnosed with crohns at 10yrs old, due to low weight and abd pain. Mild case oer colonoscopy and egd. Started on steroids and 6mp, weaned off steroids and continued without issues on 6mp until recently. Few weeks ago started having yellow leakage from his bottom, our gi Dr thought it could be pus and wanted to rule out a fistula or abcess. CT scan was clear, had egd and colonoscopy couple days later, he said didnt see crohns flare but inflammation and thought he had cdiff. Went home gradually worsening abd pain and fullness , unable to pass gas or stool. Increasing fever and tachycardia also. Came to er next morning and they thought he had a vovulus and had emergent decompression colonoscopy, it worked thankfully.. Had been started on cipro and Flagyl even though cdiff and all other cultures were negative due to his fever, tachycardia, elevated wbc,sed rate, crp increased drastically from labs previously 4 days prior. Biopsies just showed crohns, gi Dr wants to start remicade. I have looked up about this and I am very worried about starting him on it due to potential side effects and possible complications.
Would it be reasonable to ask to stay on the 6mp for longer to see if another flare happens before trying remicade? If he was having more serious crohns symptoms i would be more willing to start it. I just don't know if its worth the risks to go ahead and start it right now considering we were going to stay on it until he came back to the hospital. ??
 

my little penguin

Moderator
Staff member
So I can tell you Ds has “mild crohns “ was dx at age 7 and like your son started 6-mp after trialing Pentasa .
He stated on 6-mp for 8 months .
It started to affect his liver enzymes so like you given he had mild crohns .
We tried methotrexate next which kept his crohns calm -had side effects and let inflammation to continue (vasculitis in his feet /legs )
But like you I wanted to wait
I was afraid of the possible side effects of biologics.
After all lower level meds were safer right .......

Ds stayed on steriods /mtx for three months but with every attempt to wean off steriods more vasculitus (which had its own risks )
Finally at the ripe old age of 8 Ds started remicade and I cried
I was very afraid
Ds is now almost 17
He currently takes Stelara but has not had vasculitus again after starting biologics

our Gi won’t use 6-mp anymore with young male ibd patients due to increased lymphoma risk especially t-cell lymphoma when combined with biologics.
They only use methotrexate or biologics or biologics/plus mtx

They learn as they go in science

biologics are the one drug class that has had the fewest side effects for ds

never regretted starting them
Many studies suggest that the earlier they are given the lower the risk of surgery
Kids face a 75% chance of surgery within 5 years without biologics
Since crohns changes and worsens typically in kids over 10 years from dx

hope your kiddo improves
For me giving Ds biologics was extremely difficult
But seeing how good they work is priceless
What I thought was “good” for a kids with crohns was really low lying inflammation behind the scenes
Seeing my kid “normal “ in all aspects including a happy healthy pink intestine with no signs of inflammation after being on biologics is great

hugs
 
Have you tried EEN yet? That might help immediately and give you a little time to decide what to do next.

If the choice is 6MP vs Remicade, I'd go with Remicade.
 

my little penguin

Moderator
Staff member
If he is drinking more than 80% of his diet in boost /pediasure then he is already using een (exclusive enteral nutrition) - formula only woth no solids foods others sore 10-20% solids and the rest nutritional shakes .
Een is as effective as steriods so if he is already on steriods ....
Abd drinking pediasure as main source of nutrition.
That is hitting it from both sides
Een is short term 6-8 weeks for most kids due to the social /psychology impact .
Ds has done Een more than a few times
The first time it works the best
Once food is re introduced the inflammation comes back though
Each successive Een attempt tends to be less successful than the last by a little bit
Same woth steriods

the body just fights back harder unfortunately especially in kids

that said Ds was on Een at age 7 and did supplemental formula of one kind or another even now at age 16.
Onky now it’s his choice abd carnation instant breakfast to keep on weight
 
I just want to give my son's story about lack of serious symptoms and Crohn's my son was 10 at dx and put on azathioprine (similar to 6mp) he did okay the really noticeable symptoms went away we thought fantastic we can just carry on but he quit growing, of course, this wasn't really noticeable the first year just figured his body needed time to get back to normal all his labs were normal, the next year still now growth changed meds to methotrexate woohoo he grows an inch but develops a horrible hacking cough, we find out a side effect of methotrexate can affect the lungs and cause damage so GI pulls him off and back on aza we go. Over the next few years we try supplemental formulas to add extra calories maybe that's the problem, he gained a little weight but just wasn't thriving. At this point, he is now 14 and we are all worried about growth/development so maybe it's not Crohn's maybe he also has something else going on so several visits to an endocrinologist, lots more tests nothing really worrying shows up, all his labs are still normal GI decides to do an MRE instead of just scopes. Well, it shows massive inflammation in the small intestine and he wants to start Remicade right away. Now all the lovely moms and dads on here at the time had been saying we should look into a biologic because clearly something was going on but I was resistant, his labs were normal, he was feeling fine except that it was really affecting his quality of life now as all his peers were growing and developing and he wasn't he was 14 1/2 and still looked 10. He was 5' tall and weighed 75-80 pounds. I agreed to try it as we had to do something. Well, he is 21 now and has been on Remicade ever since and we truly discovered remission. He grew 9" over the first 18 months and went through about 3 years worth of puberty in 1 year. He is 6'2" now away at college. I was terrified of the "big drugs" but sometimes it's what they need to give them the best chance of growth and development.
 
I just want to give my son's story about lack of serious symptoms and Crohn's my son was 10 at dx and put on azathioprine (similar to 6mp) he did okay the really noticeable symptoms went away we thought fantastic we can just carry on but he quit growing, of course, this wasn't really noticeable the first year just figured his body needed time to get back to normal all his labs were normal, the next year still now growth changed meds to methotrexate woohoo he grows an inch but develops a horrible hacking cough, we find out a side effect of methotrexate can affect the lungs and cause damage so GI pulls him off and back on aza we go. Over the next few years we try supplemental formulas to add extra calories maybe that's the problem, he gained a little weight but just wasn't thriving. At this point, he is now 14 and we are all worried about growth/development so maybe it's not Crohn's maybe he also has something else going on so several visits to an endocrinologist, lots more tests nothing really worrying shows up, all his labs are still normal GI decides to do an MRE instead of just scopes. Well, it shows massive inflammation in the small intestine and he wants to start Remicade right away. Now all the lovely moms and dads on here at the time had been saying we should look into a biologic because clearly something was going on but I was resistant, his labs were normal, he was feeling fine except that it was really affecting his quality of life now as all his peers were growing and developing and he wasn't he was 14 1/2 and still looked 10. He was 5' tall and weighed 75-80 pounds. I agreed to try it as we had to do something. Well, he is 21 now and has been on Remicade ever since and we truly discovered remission. He grew 9" over the first 18 months and went through about 3 years worth of puberty in 1 year. He is 6'2" now away at college. I was terrified of the "big drugs" but sometimes it's what they need to give them the best chance of growth and development.
Thank you this is exactly how he is and how I feel. We are going to the dr this week to discuss medications.
 
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