Hi everyone! This is my first post here, on behalf of my newly diagnosed 5 year old son, with Crohn's disease. He received his first remicade treatment on 4/14 after we spent a week at the hospital stabilizing him, I suppose the first official flare-up. His appetite is great, his bowel movements are painfree but his fistula definitely increased in size. Its not draining at all but larger. I thought remicade would help heal this. How long does it usually take? I expected it to be a couple of months but did not expect it to get larger. It was tiny before. His second treatment for remicade is on 4/29, then first GI visit is on 5/6. I don't want to be irresponsible and wait until 5/6 to address this if this is a red flag. Any help would be much appreciated!!
Fistula getting larger after first remicade treatment
- Thread starter amadhi
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Hi and welcome (but sorry you have to be here).
I would call his GI. Remicade can take a while to kick in, but they may want to add something if his fistula is getting bigger (such as antibiotics like Flagyl or Cipro). Sometimes it takes several infusions before you see a difference with Remicade and sometimes dose adjustments are needed (upping the dose from 5mg/kg to 7.5 mg/kg for example).
It took my daughter 2 infusions before we saw any improvement and 4 infusions before she was significantly better. Some kids respond within a day and others take 6 months - so it's really very individual.
I will tag a couple other parents who may have advice:
my little penguin, crohnsinct, Clash, Farmwife, Mehita, pdx
I hope Remicade kicks in soon and your little guy responds quickly.
I would call his GI. Remicade can take a while to kick in, but they may want to add something if his fistula is getting bigger (such as antibiotics like Flagyl or Cipro). Sometimes it takes several infusions before you see a difference with Remicade and sometimes dose adjustments are needed (upping the dose from 5mg/kg to 7.5 mg/kg for example).
It took my daughter 2 infusions before we saw any improvement and 4 infusions before she was significantly better. Some kids respond within a day and others take 6 months - so it's really very individual.
I will tag a couple other parents who may have advice:
my little penguin, crohnsinct, Clash, Farmwife, Mehita, pdx
I hope Remicade kicks in soon and your little guy responds quickly.
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Second calling the Gi
They are there for a reason
You call they determine if it can be watched and wait
Needs more meds /tests
Or it needs to be examined quickly or wait a bit
If they have a portal then you can leave a message
I call a lot and that's ok when things are bad
Remicade took every bit of all three infusions plus a week or two to improve
They are there for a reason
You call they determine if it can be watched and wait
Needs more meds /tests
Or it needs to be examined quickly or wait a bit
If they have a portal then you can leave a message
I call a lot and that's ok when things are bad
Remicade took every bit of all three infusions plus a week or two to improve
Thank you all for your feedback! This is great -- simply because my wife & I have been feeling alone through this process. I also feel like I've been a pain because I've been asking lots of Qs via the portal but this is worrying me. The large fistula isn't normal - also confirmed by a good friend of mine who's had Crohn's since he was 15, he's now 45. But he didn't think too much of it because it wasn't draining. So I'll play it safe and give on call a call. He's already on both Flagyl and Cipro. 2x a day. And iron and zinc.
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Don't feel bad - your priority is your son. We have also called/used the portal a LOT when things have been really bad. Now that things are stable, I rarely have to call. Incidentally, we are also near Philly and go to Chop.
Things will settle down eventually, but until then, don't worry about being a pain. Your kiddo needs you!
Things will settle down eventually, but until then, don't worry about being a pain. Your kiddo needs you!
You're right Maya, absolutely. Yeah, the recent CHOP experience wasn't exactly reminiscent of past ones. The nursing staff was hit or miss, the docs on our floor were rarely available - only twice a day, etc. For being the most serious and life changing diagnosis, I thought we were shortchanged. Anyway, I should press on and ask away! Also, Maya, my son has been complaining of leg pain (btw, he has Erythema Nodosum too) and can't run (like he used to). I don't think this 5 yr old is expressing the source as accurately as I suspect. I think the skin tags/fistula situation might be the real reason why he can't run. His walking seems labored but again, doesn't complain of pain. The EN bumps and rashes are significantly better now - after using an ointment prescribed by a dermatologist. Is this typical? The trouble walking/running etc, that is.
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It really varies. We've had some "good" hospitalizations and some really bad ones. It helps if you are on GI floor but sometimes if there isn't space there, they just put you wherever there is a room. Sometimes it works and other times, not so much.
We don't have any experience with EN or fistulas so someone else will have to answer that. I think EN can cause pain, but not sure.
Sending hugs - it will get better!
We don't have any experience with EN or fistulas so someone else will have to answer that. I think EN can cause pain, but not sure.
Sending hugs - it will get better!
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Hi and welcome.
Sadly we both have young ones in common with this disease.
My girl was dx at 3 with ibd and 4 with arthritis.
my Grace is now 7 and is on Remicade for a year and a half and had worked well but she's still struggling to find full remission.
She also has EN. It's been dx by 3 docs that know what they're talking about.
EN doesn't bake the surface. I've been told this. Don't get me wrong, it's painful and hard on Grace during a flare up but never brakes open.
mlp , doesn't your son have a skin condition that breaks the skin?
Please ask as many questions as you like.
I'll be checking in later.
Sadly we both have young ones in common with this disease.
My girl was dx at 3 with ibd and 4 with arthritis.
my Grace is now 7 and is on Remicade for a year and a half and had worked well but she's still struggling to find full remission.
She also has EN. It's been dx by 3 docs that know what they're talking about.
EN doesn't bake the surface. I've been told this. Don't get me wrong, it's painful and hard on Grace during a flare up but never brakes open.
mlp , doesn't your son have a skin condition that breaks the skin?
Please ask as many questions as you like.
I'll be checking in later.
Thank you Maya! You've been awesome!!! CHOP has definitely been hit or miss. For instance, during the week we were hospitalized, several different groups of ppl popped in & out. A nutritionist came by before he had his MRI on Friday 4/8 & subsequently colonoscopy on 4/11 and talked in general terms. She then told us that she would come by and give us details after diagnosis finalized. We knew about diagnosis on Monday checked out on Thursday and no sign of her. After I emailed the Child Life liaison, and asked her to forward my email to her, 2 days later she called my wife and told her that when she gets back to the office on Monday 4/25, she'll email her a list! It's been awful. Food intake is key when it comes to Crohn's and we've been in the dark. We were told right off the bat about no nuts, no seeds, no popcorn, no corn, no raw veg, no high fiber foods etc. But no suggestions of foods that are Crohn's friendly, if you will. Any links you can share? We're at a restaurant now, and have difficulty picking. Every meal has been scrutinized and carefully selected - it's been stressful to be honest. He's not a big candy, chips, chocolates, candy person but every once in a while indulges. Is this ok? lol. His 10 yr old brother had some Doritos earlier today (ranch) and he wanted some -- I just reminded older bro that he needs to limit that around him, being insensitive to his little brother. Is this type of snack ok for him afterall? Just curious. Also had questions about fruits. I know that raw veg is out but what about fruits? And juice in general? Is OJ too acidic for him? He loves OJ! That would be good if he can still have it. Also, red meat is out they said, but my friend who's had it for 30 years said that he has it and is fine. CHOP told us that chicken & seafood alone for now. Any links or suggestions or recipes or anything of anything will be awesome everyone!!! 
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So a couple things - it sounds like they're telling you that he should be on a low-residue diet for right now. This is a good link: http://www.ccfa.org/resources/diet-and-nutrition.html
They often suggest that when kids are diagnosed, until the Crohn's is controlled. It does not mean it's forever. The only restriction really is nuts, seeds and popcorn - otherwise it's very individual.
We have found through trial and error, that my daughter does better with seafood and chicken. Beef and other red meat (which she loves!) tends to cause diarrhea. She is also Lactose-intolerant, which can be common with IBD. She can still eat things with lactose, but avoids very cheesy things or things with a lot of butter. She also takes Lactaid.
Veggies (high fiber) tend to cause cramping and diarrhea for her. We do a lot of soups or very well-cooked veggies. She also does not do so well with high fat foods.
However, it REALLY varies. She has other GI conditions (Gastroparesis) so that limits her diet.
You'll have to figure out over time what works for your son. There are some kids who have pretty limited diets unfortunately. There are others who can eat absolutely everything!! We also saw a nutritionist at diagnosis who was really not the most helpful. She just said it was trial and error.
At the time, I was very frustrated - it would be easier if they gave us a plan!! But after reading kids' stories on here - it's really true. There are some kids who can eat any amount of junk food and be fine. Others don't do so well with junk food.
My daughter does not like juice (but never has - that's just a preference) but if he tolerates it, I wouldn't see any problem with OJ.
I would imagine MOST kids with Crohn's eat junk food every so often. Mine definitely does!! She loves pizza, even though it bothers her stomach and will eat it occasionally. She loves dessert and chocolate.
The bottom line is you will figure it out. Unless you decide to do a specific diet, there are no hard and fast rules.
The only diet that has definitely been shown to work for Crohn's is enteral nutrition - typically 100% formula for 6-8 weeks. It induces remission (about as effective as steroids) but most kids need a maintenance medication like Remicade to stay in remission. Some kids drink the shakes and other kids use a feeding tube. Some (including my daughter) do supplemental EN to keep up their weight. There are many threads and EN studies on the parents forum, if you are interested.
Good luck!
They often suggest that when kids are diagnosed, until the Crohn's is controlled. It does not mean it's forever. The only restriction really is nuts, seeds and popcorn - otherwise it's very individual.
We have found through trial and error, that my daughter does better with seafood and chicken. Beef and other red meat (which she loves!) tends to cause diarrhea. She is also Lactose-intolerant, which can be common with IBD. She can still eat things with lactose, but avoids very cheesy things or things with a lot of butter. She also takes Lactaid.
Veggies (high fiber) tend to cause cramping and diarrhea for her. We do a lot of soups or very well-cooked veggies. She also does not do so well with high fat foods.
However, it REALLY varies. She has other GI conditions (Gastroparesis) so that limits her diet.
You'll have to figure out over time what works for your son. There are some kids who have pretty limited diets unfortunately. There are others who can eat absolutely everything!! We also saw a nutritionist at diagnosis who was really not the most helpful. She just said it was trial and error.
At the time, I was very frustrated - it would be easier if they gave us a plan!! But after reading kids' stories on here - it's really true. There are some kids who can eat any amount of junk food and be fine. Others don't do so well with junk food.
My daughter does not like juice (but never has - that's just a preference) but if he tolerates it, I wouldn't see any problem with OJ.
I would imagine MOST kids with Crohn's eat junk food every so often
. Mine definitely does!! She loves pizza, even though it bothers her stomach and will eat it occasionally. She loves dessert and chocolate.The bottom line is you will figure it out. Unless you decide to do a specific diet, there are no hard and fast rules.
The only diet that has definitely been shown to work for Crohn's is enteral nutrition - typically 100% formula for 6-8 weeks. It induces remission (about as effective as steroids) but most kids need a maintenance medication like Remicade to stay in remission. Some kids drink the shakes and other kids use a feeding tube. Some (including my daughter) do supplemental EN to keep up their weight. There are many threads and EN studies on the parents forum, if you are interested.
Good luck!
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So sorry to hear about your son's diagnosis. Yes, Remicade can take a while to kick in, so it's not surprising that the fistula hasn't responded yet. I agree with telling his GI about it, as he may want to add some additional treatments to help until the Remicade starts working.
Diet is definitely a trial and error thing. We tried a lot of different diets when my daughter was first diagnosed. The SCD diet and the IBD-AID diet helped to reduce her abdominal pain and diarrhea, but her inflammatory markers didn't go down, and she lost weight on both of them because she just couldn't eat that many things that she liked. The most helpful diet for her was EEN (with an NG tube), and that was extremely effective for her; it helped to heal her intestines and she gained 20 pounds in 2 months. Now that she's feeling well, she eats a low residue diet with mostly home-made foods. She does eat some junk food, but not much.
Hang in there. The first few months after diagnosis are overwhelming, but it gets easier as time goes on.
Diet is definitely a trial and error thing. We tried a lot of different diets when my daughter was first diagnosed. The SCD diet and the IBD-AID diet helped to reduce her abdominal pain and diarrhea, but her inflammatory markers didn't go down, and she lost weight on both of them because she just couldn't eat that many things that she liked. The most helpful diet for her was EEN (with an NG tube), and that was extremely effective for her; it helped to heal her intestines and she gained 20 pounds in 2 months. Now that she's feeling well, she eats a low residue diet with mostly home-made foods. She does eat some junk food, but not much.
Hang in there. The first few months after diagnosis are overwhelming, but it gets easier as time goes on.
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Everyone is a little different. Me, I can't do gluten so unless they say gluten free I couldn't do the Doritos. Have you ever tried a food diary to see what foods aggravate them?Thank you Maya! You've been awesome!!! CHOP has definitely been hit or miss. For instance, during the week we were hospitalized, several different groups of ppl popped in & out. A nutritionist came by before he had his MRI on Friday 4/8 & subsequently colonoscopy on 4/11 and talked in general terms. She then told us that she would come by and give us details after diagnosis finalized. We knew about diagnosis on Monday checked out on Thursday and no sign of her. After I emailed the Child Life liaison, and asked her to forward my email to her, 2 days later she called my wife and told her that when she gets back to the office on Monday 4/25, she'll email her a list! It's been awful. Food intake is key when it comes to Crohn's and we've been in the dark. We were told right off the bat about no nuts, no seeds, no popcorn, no corn, no raw veg, no high fiber foods etc. But no suggestions of foods that are Crohn's friendly, if you will. Any links you can share? We're at a restaurant now, and have difficulty picking. Every meal has been scrutinized and carefully selected - it's been stressful to be honest. He's not a big candy, chips, chocolates, candy person but every once in a while indulges. Is this ok? lol. His 10 yr old brother had some Doritos earlier today (ranch) and he wanted some -- I just reminded older bro that he needs to limit that around him, being insensitive to his little brother. Is this type of snack ok for him afterall? Just curious. Also had questions about fruits. I know that raw veg is out but what about fruits? And juice in general? Is OJ too acidic for him? He loves OJ! That would be good if he can still have it. Also, red meat is out they said, but my friend who's had it for 30 years said that he has it and is fine. CHOP told us that chicken & seafood alone for now. Any links or suggestions or recipes or anything of anything will be awesome everyone!!!
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Big hugs
Rash that breaks the skin for ds is sweet syndrome
As far as diet
It depends
Ds did 8 weeks of EEN (peptamen Jr orally ) at age 7.
It was tough but really glad we did it
After wards kept ds on 2-3 shakes a day to keep his growth and weight with that if his peers
Also a good thing to have when they get sick and don't want to eat
For the first 3.5 years we kept ds in a diet of whatever he wanted except his food allergens
That worked well
Last year he started to have issues so we switched EEN for two weeks then did the crohns exclusive diet
Found out his triggers
Red meat wheat chicken ( yes chicken) beans lactose high fiber veggies etc.,,
At the end of the year found out he had Gastroparesis so ....
We have to rethink triggers again since the previous triggers could have been DGE without gastric emptying meds
Ds is currently on EEN yet again
But he had a Gi infection and the Gi wants his gut to calm before adding food
Rash that breaks the skin for ds is sweet syndrome
As far as diet
It depends
Ds did 8 weeks of EEN (peptamen Jr orally ) at age 7.
It was tough but really glad we did it
After wards kept ds on 2-3 shakes a day to keep his growth and weight with that if his peers
Also a good thing to have when they get sick and don't want to eat
For the first 3.5 years we kept ds in a diet of whatever he wanted except his food allergens
That worked well
Last year he started to have issues so we switched EEN for two weeks then did the crohns exclusive diet
Found out his triggers
Red meat wheat chicken ( yes chicken) beans lactose high fiber veggies etc.,,
At the end of the year found out he had Gastroparesis so ....
We have to rethink triggers again since the previous triggers could have been DGE without gastric emptying meds
Ds is currently on EEN yet again
But he had a Gi infection and the Gi wants his gut to calm before adding food
Hi everyone! Sorry, I disappeared for a few days while all of you were trying to help me. It's been a little hectic around here lately. That said, I really appreciate all your feedback and support!
Yes, PDX, you're correct. We emailed and called docs and got the same reply- that it'll take a couple of infusions for fistula to heal. I've gotten over second guessing myself and have had CHOP staff on speed dial now. They only have at least a GI fellow 24/7 who can answer general queries. At first, I feared asking too msg questions. Now, we're scheduled for his first outpatient Remicade infusion on Friday after which GI will be seeing him, his appt has been moved from 5/6 to 4/29 - hope the fistula size isn't alarming thus the earlier appt. (Mallorymug, we know it's larger because it was a tiny dot on 4/1 when his GI doc identified it, very very small. Now, it's exponentially bigger. But the concern was whether it was draining, and it's not. So it didn't seem to bother the GI fellow too much. Isa, my son, has had a hard time walking though so I'm assuming that his rear/fistula is hurting. He has a high threshold for pain, so he's been denying any pain resulting from it.
PDX, thank you for sharing your experience with diet.
Ron, a food diary is a great idea! I'll give it a go. [emoji5]
Penguin, his docs have asked us to keep him on 3 pediasures a day, so that's helping with the weight gain for sure. But there are pricey! At $7.99 a pop for a cvs 6-pack. I'm applying for secondary insurance to help offset some of the costs, hopefully the pediasures, or Peptamen jr. Any of you have experience with that? I know chop told us that he now qualifies for a bunch of stuff because he is deemed "disabled". I'll get the app in tomorrow. I heard that it can take 2-3 months to receive a reply. You're absolutely right, penguin, great option to have when they're sick and can't eat as much!
Thank you all!!!! GroupHug [emoji1417]
Yes, PDX, you're correct. We emailed and called docs and got the same reply- that it'll take a couple of infusions for fistula to heal. I've gotten over second guessing myself and have had CHOP staff on speed dial now. They only have at least a GI fellow 24/7 who can answer general queries. At first, I feared asking too msg questions. Now, we're scheduled for his first outpatient Remicade infusion on Friday after which GI will be seeing him, his appt has been moved from 5/6 to 4/29 - hope the fistula size isn't alarming thus the earlier appt. (Mallorymug, we know it's larger because it was a tiny dot on 4/1 when his GI doc identified it, very very small. Now, it's exponentially bigger. But the concern was whether it was draining, and it's not. So it didn't seem to bother the GI fellow too much. Isa, my son, has had a hard time walking though so I'm assuming that his rear/fistula is hurting. He has a high threshold for pain, so he's been denying any pain resulting from it.
PDX, thank you for sharing your experience with diet.
Ron, a food diary is a great idea! I'll give it a go. [emoji5]
Penguin, his docs have asked us to keep him on 3 pediasures a day, so that's helping with the weight gain for sure. But there are pricey! At $7.99 a pop for a cvs 6-pack. I'm applying for secondary insurance to help offset some of the costs, hopefully the pediasures, or Peptamen jr. Any of you have experience with that? I know chop told us that he now qualifies for a bunch of stuff because he is deemed "disabled". I'll get the app in tomorrow. I heard that it can take 2-3 months to receive a reply. You're absolutely right, penguin, great option to have when they're sick and can't eat as much!
Thank you all!!!! GroupHug [emoji1417]
Hi there, and sorry that you and your family are going through this awful time. My little girl Lucy has crohns also and her main symptoms sound a little like your little boys, she had extremely large and painful fistulas - she was diagnosed at two and started infliximab at 4 - ultimately it didn't work and once we realised she was disimproving on infliximab she was changed to humira whic has been working for three years now. Your Gi might add 6mp or methotrexate to boost the infliximab before giving up on it, but my best advice is to stay in touch with the team and inform them of even the slightest disprovement
