My son is 10 and was just recently diagnosed with Crohns. He has it in his stomach and small intestine. The doctor believed him to be mild when he was diagnosed. GI put him on Pentasa and Previcid bc his ulcers were bleeding at the time the pill cam was done. He was doing well for the first two months but the last month he has not. He has had more stomach pain and diarrhea (which was not really his issue in the beginning he had more nausea and vomiting). I am currently trying to keep a journal of foods that may flair him up. It def seems like ice cream is one of those triggers and spicy food. Anyway, I am scared that if I take him back to GI he is going to start him on Methotrexate bc he already said that was the next step. I am scared to death to put him on these heavy meds at such a young age. Has anyone tried a nutritionist or homeopathic Dr.?
Son recently diagnosed
- Thread starter Jenr1016
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Sorry to hear your son isn't doing too well. I understand your hesitation going back to the GI but it does sound as if he needs to. The medications are scary but so is untreated Crohns unfortunately. It took me over six months to agree to put my son on 6mp (with many tears) during which time he developed a fistula in his bottom that needed surgery. I do wonder if that might had been avoided if he was on meds.
If you are really reluctant, then you could ask about Enteral Nutrition(liquid diet). My son had Modulen through an NG tube straight after diagnosis for 9 weeks. It was tough but worth it as it healed his ulcers and stopped the pain, it also allowed us to avoid steroids.
As for adjusting diet yourself, it would be good to get advice from a nutritionist. We were told to let him eat what he wants unless it causes pain. As a rule we avoid popcorn, seeds, nuts and fizzy juice. I cook all veg, peel all fruit and give white bread instead of brown. Hope that helps
If you are really reluctant, then you could ask about Enteral Nutrition(liquid diet). My son had Modulen through an NG tube straight after diagnosis for 9 weeks. It was tough but worth it as it healed his ulcers and stopped the pain, it also allowed us to avoid steroids.
As for adjusting diet yourself, it would be good to get advice from a nutritionist. We were told to let him eat what he wants unless it causes pain. As a rule we avoid popcorn, seeds, nuts and fizzy juice. I cook all veg, peel all fruit and give white bread instead of brown. Hope that helps
I can relate to your fears. My son first showed signs at age 5. I really fought it and thought the GI's were the enemy! That sounds silly to say now after all we've been thru.. but I really had a very hard time with it all. So my advice is to find a team of doctors that you feel comfortable with and ones that let you voice your fears and then will be patient and give you reasons for their medicine choices for your son. If I could do things over... I would do it differently. I was in denial that my son had crohns... and I thought I fixed it all with a gluten free diet. Looking back.. the gluten free diet helped him... but I weaned him off his meds (sulfasalazine and flagyl at the time) and just never went back to the GI. My son went into a bit of a remission... but he didn't grow. At age 10 the bottom fell out. Hang in there!! You are not alone in your feelings and fears. I still have them too!! But I know this disease is a beast!!
I could have written your post last month. My son was recently diagnosed. The meds scare me and I would prefer to do anything but put my child on long term meds. However, I do not think he will cooperate with EEN and it won't work if he won't cooperate. EEN is really the only option other than medications in my opinion. It's really worth looking into for your son.
My son started methotrexate and isn't having any problems with it. It's a small dose to help prevent antibodies to Remicade, which will start soon. Yes, the drugs scare me. But untreated Crohn's is scarier, IMO. I don't want to have to undo damage that could possibly be prevented.
I agree with finding a team you trust. Get a second opinion if that helps. We saw two reputable doctors and other than EEN, neither said diet changes could treat my son's Crohn's. Diet changes could help his symptoms, but Crohn's would continue to affect his body.
My son started methotrexate and isn't having any problems with it. It's a small dose to help prevent antibodies to Remicade, which will start soon. Yes, the drugs scare me. But untreated Crohn's is scarier, IMO. I don't want to have to undo damage that could possibly be prevented.
I agree with finding a team you trust. Get a second opinion if that helps. We saw two reputable doctors and other than EEN, neither said diet changes could treat my son's Crohn's. Diet changes could help his symptoms, but Crohn's would continue to affect his body.
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My son was dx'd at 10 and will be 15 next month. He also has small bowel disease as well as at his TI. The tricky thing about small bowel is it can be quite silent while doing damage. We thought we had my son's Crohn's under control but he grew only a tiny bit about 2 inches over several years at a time when most boys are shooting up and did not gain any weight.
The drugs are scary but when you have your child back and he is thriving you just pray they keep on working. We have finally found what seems to be working for my son and he is growing and gaining weight and now tells me he's hungry instead of me reminding him he needs to eat. He know goes about most days and most of the time doesn't even think about Crohn's.
Pentasa is a very mild drug and for a majority of Crohn's patients it doesn't do a whole lot and is generally used along side another drug to give it a boost. I've heard it described on here once that it is like giving aspirin to treat a brain tumor.
We've tried many of the diets and some have even helped with symptoms but didn't do much to control the disease overall. The one exception to that is enteral nutrition (EEN) as Sascot says it did wonders unfortunately as soon as you re-introduce food symptoms return.
It's a journey with a steep learning curve to find what works to keep your son healthy and you sane but we are all here for support, to answer questions and a lot of times a good laugh just when you need it.
Please keep us posted and welcome to the club although I wish you did not have cause to join.
The drugs are scary but when you have your child back and he is thriving you just pray they keep on working. We have finally found what seems to be working for my son and he is growing and gaining weight and now tells me he's hungry instead of me reminding him he needs to eat. He know goes about most days and most of the time doesn't even think about Crohn's.
Pentasa is a very mild drug and for a majority of Crohn's patients it doesn't do a whole lot and is generally used along side another drug to give it a boost. I've heard it described on here once that it is like giving aspirin to treat a brain tumor.
We've tried many of the diets and some have even helped with symptoms but didn't do much to control the disease overall. The one exception to that is enteral nutrition (EEN) as Sascot says it did wonders unfortunately as soon as you re-introduce food symptoms return.
It's a journey with a steep learning curve to find what works to keep your son healthy and you sane but we are all here for support, to answer questions and a lot of times a good laugh just when you need it.
Please keep us posted and welcome to the club although I wish you did not have cause to join.
My 13 year old son was diagnosed 2 weeks ago and I have struggled badly over putting him on the meds as well but hearing all of the damage that untreated or under treated Crohns can do scared me more than what the risks from these meds can be. If we can avoid or at least prolong surgery and he can start gaining back the weight he has lost that justifies my decision to starting the meds right now in the beginning.
Thank you all so much for your advice and your stories. Its great to hear others in the same situation. I do love my pediatric GI. He is wonderful and very thorough. He has treated my son for issues with his stomach since he was 3 (who knows maybe it has been crohns the whole time). I feel like any other GI would have stopped after the endoscopy, colonoscopy and upper GI were normal. He went further bc my sons ANCA bloodwork came back extremely high for crohns so he wanted to do the pill cam and that is how we found the ulcers. So I do think he is a great GI, its just me, I am just scared especially when you hear that it is a form of chemo.
Also, another question? Have your kids ever complained of groin pain. He has been saying he has pain in the groin area or lower abdomen. He is bent over in pain sometimes because of it but it is new probably just in the last week. Not really sure if it means anything but I thought I would ask.
My sons weight is staying the same. He does eat constantly though and is always hungry but immediately is in the bathroom after he eats. He is very skinny and a little underweight but he has not lost weight since he got very sick in January, which now we know was a flare.
Also, another question? Have your kids ever complained of groin pain. He has been saying he has pain in the groin area or lower abdomen. He is bent over in pain sometimes because of it but it is new probably just in the last week. Not really sure if it means anything but I thought I would ask.
My sons weight is staying the same. He does eat constantly though and is always hungry but immediately is in the bathroom after he eats. He is very skinny and a little underweight but he has not lost weight since he got very sick in January, which now we know was a flare.
Welcome to the forum, but sorry to hear of your son's dx. I can totally relate to your fears. You will probably find some testimonials of how naturopathic remedies helped someone's Crohn's. But, trust your GI. These meds really are necessary. My son's CD is mainly in his small intestine too. I inquired about Pentasa, but our GI said it is really only effective for colitis or CD in the large intestine. My son was on Prednisone, tried Imuran, and is now on Methotrexate injections. It has actually been a wonderful med for him. Instead of thinking of it as a chemo drug, I started thinking of it as a drug used for a number of conditions; like cancer, arthritis, and Crohn's.
My son has not complained of groin pain, but did have pain in his abdomen at the time of diagnosis. He still gets pains in his legs and feet though.
All the best to you. I hope your son gets a good treatment plan going and starts feeling better soon.
My son has not complained of groin pain, but did have pain in his abdomen at the time of diagnosis. He still gets pains in his legs and feet though.
All the best to you. I hope your son gets a good treatment plan going and starts feeling better soon.
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Groin pain can be hip pain.
You really want to stay ahead of the disease as much a possible since kids tend to have it longer and follow a more severe course. This gives you the best chance at saving the most bowel .
DS was dx at age 7 in his stomach duodendum TI caecum sigmoid and rectum.
All extremely mild only showed on biopsy.
I didn't even want pentasa in the beginning .
The meds looked really scary .
Pentasa due nothing and DS got worse.
After a year of trying all of the less scary meds ( pentasa EEN 6-mp Mtx and combos ) DS moved to remicade ( biologic ) at the ripe old age of 8.
It was a miracle drug and have me my kid back.
It had less side effects than the other drugs and made him feel normal .
Gain weight /grow
DS drinks 2-3 peptamen jr a day to help with growth /weight .
It will be ok
Risks are minimal - call the GI so you can avoid a big flare.
Everyday risk no one is constantly pointing out to you
Risk of death under 14
Car 1 in 250
Drowning 1 in 1000
T cell lymphoma without Ibd or meds. 2 in 10000
You really want to stay ahead of the disease as much a possible since kids tend to have it longer and follow a more severe course. This gives you the best chance at saving the most bowel .
DS was dx at age 7 in his stomach duodendum TI caecum sigmoid and rectum.
All extremely mild only showed on biopsy.
I didn't even want pentasa in the beginning .
The meds looked really scary .
Pentasa due nothing and DS got worse.
After a year of trying all of the less scary meds ( pentasa EEN 6-mp Mtx and combos ) DS moved to remicade ( biologic ) at the ripe old age of 8.
It was a miracle drug and have me my kid back.
It had less side effects than the other drugs and made him feel normal .
Gain weight /grow
DS drinks 2-3 peptamen jr a day to help with growth /weight .
It will be ok
Risks are minimal - call the GI so you can avoid a big flare.
Everyday risk no one is constantly pointing out to you
Risk of death under 14
Car 1 in 250
Drowning 1 in 1000
T cell lymphoma without Ibd or meds. 2 in 10000
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Oh in don't read the pamphlet on Tylenol the safe drug for kids and infants.
Can cause Steven Johnson syndrome as can antibiotics .
Liver damage etc....
Risks benefits
Benefits are much better .
Talk to the Gi about your concerns
Can cause Steven Johnson syndrome as can antibiotics .
Liver damage etc....
Risks benefits
Benefits are much better .
Talk to the Gi about your concerns
Groin pain could indicate a fistula in that region and should be reported right away to the GI and/or pediatrician so they can do an exam.
It's very scary at first then it will become your new normal. That's how it was for me. Now I look back feel a little foolish over being so scared to treat my son aggressively. If I had it to do over again I would do so sooner.
If he had a cancer diagnosis you would probably not hesitate to follow the doctor's suggestions even though you were scared of the side effects and scared of the disease. This is no different except it is a life-long battle to maintain overall health and quality of life. For children it is also a race to get them the nutrition they need to physically develop their brains, organs, bones, etc.
My son has done it all from EEN to Remicade and Humira. Diagnosed at 10. If I were you I would start the MTX and do EEN if you can get your son to cooperate. The EEN will improve his nutrition and help heal his intestines while the MTX is starting to work.
It's very scary at first then it will become your new normal. That's how it was for me. Now I look back feel a little foolish over being so scared to treat my son aggressively. If I had it to do over again I would do so sooner.
If he had a cancer diagnosis you would probably not hesitate to follow the doctor's suggestions even though you were scared of the side effects and scared of the disease. This is no different except it is a life-long battle to maintain overall health and quality of life. For children it is also a race to get them the nutrition they need to physically develop their brains, organs, bones, etc.
My son has done it all from EEN to Remicade and Humira. Diagnosed at 10. If I were you I would start the MTX and do EEN if you can get your son to cooperate. The EEN will improve his nutrition and help heal his intestines while the MTX is starting to work.
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I was scared of the meds too. My son was 8 at dx (now 14) and we did nothing for almost three years. What I didn't understand was that he was having simmering inflammation over and over again. He ended up with a stricture and had to have 10" of his small intestine removed at age 12. Looking back, like some of the others have said, I would have treated sooner and stronger. My son paid the price of MY fear and I regret it every day.
My son also had groin pain last October and it turned out to be an abscess and fistula, only discoverable via ultrasound because they were on the inside. Things went downhill pretty quickly and he ended up in the hospital for four days followed by weeks of antibiotics. I would call your GI ASAP and get it checked out. You never know what's brewing with this stupid disease.
On a positive note, he's been on Remicade for 8 months now and been in a nice, solid remission for seven months. It's been absolutely wonderful. Remicade is what he needed all along to enjoy and live a mostly normal life TODAY. If there are scary issues later on, we'll deal with them then. Right now we're too busy, playing, growing, and being happy!
My son also had groin pain last October and it turned out to be an abscess and fistula, only discoverable via ultrasound because they were on the inside. Things went downhill pretty quickly and he ended up in the hospital for four days followed by weeks of antibiotics. I would call your GI ASAP and get it checked out. You never know what's brewing with this stupid disease.
On a positive note, he's been on Remicade for 8 months now and been in a nice, solid remission for seven months. It's been absolutely wonderful. Remicade is what he needed all along to enjoy and live a mostly normal life TODAY. If there are scary issues later on, we'll deal with them then. Right now we're too busy, playing, growing, and being happy!
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Pentasa doesn't work well for Crohn's and the Methotrexate is a better option. I'd agree with the groin pain being a fistula, which is what my son was diagnosed after having. Be sure to discuss it with the GI. Mild doesn't always mean mild approach, you need to get the disease under control. It's frustrating going through trial and error, but talk to your doctor about the top-down approach. It's the most accepted idea for kids right now and helps to ensure growth and prevent complications/surgery. Best of luck!
AZMOM
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Claire was 6 at dx and I will echo what everyone else said. Scary is relative. Those little insides have a LONG way to go! You want to preserve his body by stopping the disease. Love your heart.....
While some foods aren't easily digested and irritate kids while they flare - they didn't cause his Crohn's. So you have to stop the inflammation in it's tracks so he can get the nutrition he needs, grow, be happy, find his new normal.
We're here for you.....definitely go back to the doctor. Get a second opinion if you need one. And keep reading so you are comfortable with the hard decisions you are making.
Big hug.....I remember the early days all too well.
J.
While some foods aren't easily digested and irritate kids while they flare - they didn't cause his Crohn's. So you have to stop the inflammation in it's tracks so he can get the nutrition he needs, grow, be happy, find his new normal.
We're here for you.....definitely go back to the doctor. Get a second opinion if you need one. And keep reading so you are comfortable with the hard decisions you are making.
Big hug.....I remember the early days all too well.
J.
Thank u all for your responses. He has now had a great week, still everyday stomach pains but no other issues. So crazy some days are bad then we have a good stretch. Guess I will just hold off for now. He is suppose to have tests repeated at the end of the summer to see how he is doing. Praying things stay this way.
If he starts having fevers or runs a fever over 101.5 that lasts more than a day you need to take him to the doctor as that could be an abscess which can be life threatening.
If the groin pain returns I really strongly suggest you take him back to GI. A fistula is a track running between two body parts. People with Crohn's get them between different sections of their intestines and sometimes between their intestines and other places like the bladder or the skin. It requires special treatment and is often found with an abscess.
If he develops frequent diarrhea that smells bad he may have c. diff an infection. This also needs to be treated right away. Usually with c. diff the person looks and feels sick and also runs a fever but not always.
If he develops diarrhea that is bloody you should call GI. If he gets it more than 10 -12 times a day whether it's bloody or not call GI. You may need to take him to ER with that frequency as he may become dehydrated.
Abdominal pain that is so severe he cannot walk or straighten up may be an obstruction and should probably be a 911 call.
Hope all goes well over the rest of the summer.
If the groin pain returns I really strongly suggest you take him back to GI. A fistula is a track running between two body parts. People with Crohn's get them between different sections of their intestines and sometimes between their intestines and other places like the bladder or the skin. It requires special treatment and is often found with an abscess.
If he develops frequent diarrhea that smells bad he may have c. diff an infection. This also needs to be treated right away. Usually with c. diff the person looks and feels sick and also runs a fever but not always.
If he develops diarrhea that is bloody you should call GI. If he gets it more than 10 -12 times a day whether it's bloody or not call GI. You may need to take him to ER with that frequency as he may become dehydrated.
Abdominal pain that is so severe he cannot walk or straighten up may be an obstruction and should probably be a 911 call.
Hope all goes well over the rest of the summer.
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Sascot, based on the research my husband has done, you can stop worrying that your child's fistula could have been prevented by starting 6MP earlier. Studies have shown that the main benefit of 6MP is that it is "steroid sparing" (and possibly anti-MAP) and that bad outcomes such as fistulas and strictures are no less frequent on 6MP. I could ask him where he read that, if it would be helpful. He is a researcher and spent a lot of time reading about Crohn's and UC on Pub Med etc.
Thank you so much this is very helpful. So happy I found this forum. Praise the Lord he is still doing well, but at least now I know what to look for. He is a happy 10 year old, eats like a horse and is very active so I definitely will be able to tell if things are not right with him. It is very obvious with him. Although he always has stomach pain, I am sure I will know if it gets really bad. Just praying he stays on the mild side.
AZMOM
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Momtotwo - I'm sure there's a more complicated answer than this but to me, best prevention is smacking the damn disease into remission.
It's like the Wizard of Oz movie..........I feel like the farther we travel down the yellow brick road (and oh the flying monkeys! :rof
, the farther in the distance Oz seems to be. Ugh.
I'm sure someone smarter than I will weigh in.
J.
It's like the Wizard of Oz movie..........I feel like the farther we travel down the yellow brick road (and oh the flying monkeys! :rof
, the farther in the distance Oz seems to be. Ugh. I'm sure someone smarter than I will weigh in.
J.
Ok new issue last night my son was telling me that something felt like it was pinching him when he was trying to urinate. Then he felt burning and kept feeling like he had to go. I started to worry but now today he is fine again. Just don't know if it is something or just over reacting. If it is a fistula, the symptoms would not go away right? It seems like he gets these symptoms and then he is fine. Not sure what to do.
Call GI tomorrow. Insist on an appointment with PA or GI ASAP. Ask to be on cancellation list if necessary.
Fistulas are like little tunnels running through the tissues. Bending or moving can cause them to close and open because they are flexible. He is having persistent though intermittent UT symptoms so you should call the doctor and not second guess this. You do NOT want him to develop an abscess in that area.
Fistulas are like little tunnels running through the tissues. Bending or moving can cause them to close and open because they are flexible. He is having persistent though intermittent UT symptoms so you should call the doctor and not second guess this. You do NOT want him to develop an abscess in that area.
AZMOM
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I don't have fistula experience but when anything is new, different, weird, concerning, I think calling the doc is good. If nothing is needed, you get peace of mind. But if something IS brewing, you definitely want to head it off at the pass if you can!!!!!!!!!!
:ghug:
J.
:ghug:
J.
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What we all HATE about this disease is how deceptive it is. There can be a lot of damage going on inside without obvious symptoms. How often is his bloodwork checked? Hope it's really nothing, but it's important to be cautious and in contact with the GI, they need to know.
Another thing about this disease... It can be silent and then BAM!! Symptoms all seem to come at once. I agree with AZMOM and Smack it into remission!! Keep it mild while its mild!! I'd also report to the GI anything new and unusual.
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Exact same thing here with my son. Need to pee, can't, burning... sounds all too familiar. It turned out to be an abscess and fistula and within a week he was in the hospital and on heavy duty antibiotics. Like the others have suggested, give your GI a call. That being said, our GI wasn't too concerned, but once things went bad, they went bad quickly and his GI apologized for not reacting sooner.
It never hurts to call. Meantime, write everything down in detail. Over time you might see a trend or pattern that can be useful information later.
Oh, and if he spikes a fever, definately call or even consider just heading to the hospital. Keep us posted...
It never hurts to call. Meantime, write everything down in detail. Over time you might see a trend or pattern that can be useful information later.
Oh, and if he spikes a fever, definately call or even consider just heading to the hospital. Keep us posted...
Hi the fact that your son always has stomac pain and possibly other related symptoms such as pain when urinating is a strong indication the disease is possibly still active. Im sorry but as much as i encourage positive thinking, praying wont be enough here. Even a ''mild'' disease when continous, chronic can lead to permanent damage, sometimes irreversible and also increase risk of cancer in the long run. Get it under control ASAP to avoid further complication. Some parents have suggested Enteral diet, I second that opinion, its definately an option you can try before jumping to medications. Push it to your doctor, as some drs may not be enthousiastic about it. It can be drunk either in a glass or via NG tube. Some nice educative videos of kids showing instruction on youtube are available. Gastro-enterologist John Hunter has written a book about how to slowly start reintroducing different food categories after remission induced by EN. Some studies have also shown that some people can benefit from longer periods of EN combined with small amount of food during the day.
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The problem is you don't really ever know what's going on in the inside .
Some kids act fine eat fine etc but have horrible damage others have lots of symptoms but only a little damage .
That is why there is close monitoring by the Gi and lots and lots of tests over time via blood , imaging and scopes to try and stay ahead of the disease.
Being dx with Ibd under the age of 20 is a risk factor for severe disease course .
Those under 15 even higher risk.
Most kids start out as inflammtory Ibd and later move on to structuring or fistulizing .
Ibd in kids tends to progress/spread over a ten year period from dx.
Adults do not have this same pattern .
EEN has a lot of success in kids the first time but has a reduce rate of success each time after that . Most disease does not remain in remission after that.
There is an excellant set of articles in the ped research section top of the parents page.
Take time to read through those.
Knowledge is key to making informed decisions for your kiddo .
Some kids act fine eat fine etc but have horrible damage others have lots of symptoms but only a little damage .
That is why there is close monitoring by the Gi and lots and lots of tests over time via blood , imaging and scopes to try and stay ahead of the disease.
Being dx with Ibd under the age of 20 is a risk factor for severe disease course .
Those under 15 even higher risk.
Most kids start out as inflammtory Ibd and later move on to structuring or fistulizing .
Ibd in kids tends to progress/spread over a ten year period from dx.
Adults do not have this same pattern .
EEN has a lot of success in kids the first time but has a reduce rate of success each time after that . Most disease does not remain in remission after that.
There is an excellant set of articles in the ped research section top of the parents page.
Take time to read through those.
Knowledge is key to making informed decisions for your kiddo .
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^^^I second that. My son does not have any symptoms beyond an inability to gain much weight. He has no stomach pains, D, fevers, bleeding yet his colonoscopy performed 2 weeks ago showed progression of active disease. He eats all the time and no food bothers him, works a summer job, hangs out with friends, labs look great-all normal. You wouldn't know that he has to insert an ng tube every night to hold on to the weight he has or to gain weight.
This disease can be insidiously silent. I'm thankful that our Ped GI realizes that in C's case imaging, scopes etc are needed and often to check progression and severity because his symptoms don't show it. But because it has taken some time to figure this out C may be facing surgery.
Hope all works out for your son.
This disease can be insidiously silent. I'm thankful that our Ped GI realizes that in C's case imaging, scopes etc are needed and often to check progression and severity because his symptoms don't show it. But because it has taken some time to figure this out C may be facing surgery.
Hope all works out for your son.
Yup, same thoughts here. My son was diagnosed at age 14, mainly the TI. He was put on Entocort and pentasa. Truthfully, at that time he was not having many symptoms, but his scope images showed a mess and labs were all over the place. It took us a while to get things under control and I cried every time they wanted to put him on a stronger med. I think what jump started his healing was doing a liquid diet for four weeks (used Boost Plus)while starting him on 6mp. Then he was started on remicade. But the damage had been done as he had developed a stricture which they removed last year.....three years from his original diagnosis. It's really hard to hear and accept that they have to take these meds for life. Getting a second opinion is helpful....I wish I had done that early on. Best of luck. Let us know how he is.
