My son has had crohns/colitis since July of 2015 and has not had a long stretch of wellness/pain except for less than two months last summer. He is on remicade a double dose every four weeks, methotrexate 7.5 mg 1x a week and for the last three weeks Uceris for inflammation in the colon near his bottom. He has missed two months of school. He's in pain most days. He is starting to be sad about no resolution to his pain. In January he had a Colonoscopy/endoscopy and they found some inflammation near his last 10 inches of colon and EOE. Last month he had a small bowel follow through and upper GI, He had three pain free days in January and three in February. He has seen a psychologist. Pain meds don't help him. His weight is okay but he looks pale often. I believe his pain although I think the doctors think everything looks good blood and other tests. last week he went three half days of school, played basketball for a short time and I thought we were headed in a good direction but the rest of the weekend he just sat and wasn't active. This is a typically athletic happy child who loves to be around friends. It breaks my heart he says he is in pain all the time and gets no answers no help. He doesn't always look in pain but sometimes he can't walk there's so much pain. I asked for a referral to the pain clinic. I give him vitamins and probiotics. Is there pain from crohns even when things seem like there shouldn't been pain? Should I be looking into other things with our pediatrician. I do think his pain is real. Any help would be greatly appreciated and any advice.
At a loss
- Thread starter Faithsg
- Start date
Help Support Crohn's Disease Forum:
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
Hi there. I am not on much these days but your post caught my eye.
Definitely a good thing to request pain management consult. A lot of our kids deal with pain for such a long time prior to getting a diagnosis that the pain signals get amplified and they have to learn to break the pain signal. My younger daughter is going through that right now. Maya142 is our resident expert on pain. A good pain program is worth it's weight in gold.
If the GI is convinced that the IBD inflammation is not an issue (which if they found inflammation at scopes, I am not so convinced), I would ask the GI about other potential causes of the pain. Did he have any small bowel imaging to determine whether or not he is in remission or just scopes? If not, I might push to look at the small bowel before assuming he is in remission.
Many IBD patients also suffer from IBS. Cruel I know! And incredibly frustrating as the symptoms are so similar it makes it hard to flesh out what is causing what.
Another potential cause is gastroparesis. Quite a few kids on here have that in addition to IBD. kimmidwife, mlp, maya142
I am not well versed on EOE but paging MLP.
Celiac? Food allergy?
If your doc doesn't get a little more passionate about helping your son with pain, I would get a second opinion GI to take a look. I have found that pediatricians are not as well versed with digestive pain as the GI's.
Good luck and kudos to you for being such a good mom that you are not stopping helping your son.
Definitely a good thing to request pain management consult. A lot of our kids deal with pain for such a long time prior to getting a diagnosis that the pain signals get amplified and they have to learn to break the pain signal. My younger daughter is going through that right now. Maya142 is our resident expert on pain. A good pain program is worth it's weight in gold.
If the GI is convinced that the IBD inflammation is not an issue (which if they found inflammation at scopes, I am not so convinced), I would ask the GI about other potential causes of the pain. Did he have any small bowel imaging to determine whether or not he is in remission or just scopes? If not, I might push to look at the small bowel before assuming he is in remission.
Many IBD patients also suffer from IBS. Cruel I know! And incredibly frustrating as the symptoms are so similar it makes it hard to flesh out what is causing what.
Another potential cause is gastroparesis. Quite a few kids on here have that in addition to IBD. kimmidwife, mlp, maya142
I am not well versed on EOE but paging MLP.
Celiac? Food allergy?
If your doc doesn't get a little more passionate about helping your son with pain, I would get a second opinion GI to take a look. I have found that pediatricians are not as well versed with digestive pain as the GI's.
Good luck and kudos to you for being such a good mom that you are not stopping helping your son.
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
OK just read that he had a SBFT. Not sure how good those are when looking at small bowel for inflammation. I will let the others weigh in on that. We have only done MRE.
- Joined
- Jul 2, 2013
- Messages
- 6,750
My daughter has also being diagnosed with amplified pain. The way it was explained to us is that when a kiddo is inflamed for a very long time, the nerves get used to sending pain signals to the brain. So even once the inflammation is gone, they keep sending those pain signals and your child feels pain, even though there is no inflammation any more.
There are several things you can do to help. I would suggest seeing pain management ASAP.
For kids who are not functioning due to amplified pain (miserable, unable to play, enjoy activities, sleep, attend school), there are inpatient pain programs. These combine intensive PT, OT, aqua therapy, psychology (usually cognitive behavioral therapy) etc. to re-train the nerves and to teach the child to live and cope well with chronic pain.
They are not magic cures, unfortunately. Kids get better, but the pain does not go away. But it was a huge help for my daughter. She did a program at Cleveland Clinic. The programs are tailored to each kids' needs. She did two weeks inpatient and one week outpatient.
She was missing school, unable to hang out with her friends and unable to sleep. She'd lie awake till 4 or 5 am in pain. She was always exhausted, always in pain and spent most of her time in her room, because she couldn't do anything.
She was also on a lot of pain medication.
By the end of the program, she was a functioning, happy teenager. She started sleeping normally, eating better and was able to do a full day's worth of activities. It was very intense - 4 hours of PT/OT a day - but it was so worth it. Everyone was wonderful (doctors, nurses, physical therapists, occupational therapists) and it really helped her learn how to cope with chronic pain. Over time, we have reduced her pain medication.
There is a great book that explains amplified pain well "Conquering Your Child's Chronic Pain." You can get it on Amazon. It explains how chronic pain really needs to be treated differently from acute pain - for example, instead of having your child rest every time he's in pain, he should actually stay busy. He should go to school - it will keep his brain distracted and lessen the pain.
The goal is to keep his life as normal as possible. To push through the pain. It sounds horrible and hard and even cruel, but I can honestly tell you it works. My daughter was like your son - she missed so much school in high school. It didn't help anything - it just made her more isolated and stressed out.
The one caveat is that you should make sure that his IBD is under control before you pursue this approach. Has he had a pillcam recently? Or an MRE? Those are more accurate tests than a SBFT.
I would definitely have him continue to see a psychologist - preferably one that has experience with children with chronic pain. Usually when you see pain management, they will have a psychologist on staff that works with these kids. Anxiety and depression do worsen pain so it's very important to see a psychologist.
If he does have amplified pain, I wouldn't expect pain free days. I know this all sounds crazy and as moms, we just want to take the pain away. But this is the best approach for chronic pain and it really does work. Just keep things normal and try to get to pain management as soon as possible.
I would look for a pediatric pain management program specifically - most children's hospitals have them now.
Good luck!
There are several things you can do to help. I would suggest seeing pain management ASAP.
For kids who are not functioning due to amplified pain (miserable, unable to play, enjoy activities, sleep, attend school), there are inpatient pain programs. These combine intensive PT, OT, aqua therapy, psychology (usually cognitive behavioral therapy) etc. to re-train the nerves and to teach the child to live and cope well with chronic pain.
They are not magic cures, unfortunately. Kids get better, but the pain does not go away. But it was a huge help for my daughter. She did a program at Cleveland Clinic. The programs are tailored to each kids' needs. She did two weeks inpatient and one week outpatient.
She was missing school, unable to hang out with her friends and unable to sleep. She'd lie awake till 4 or 5 am in pain. She was always exhausted, always in pain and spent most of her time in her room, because she couldn't do anything.
She was also on a lot of pain medication.
By the end of the program, she was a functioning, happy teenager. She started sleeping normally, eating better and was able to do a full day's worth of activities. It was very intense - 4 hours of PT/OT a day - but it was so worth it. Everyone was wonderful (doctors, nurses, physical therapists, occupational therapists) and it really helped her learn how to cope with chronic pain. Over time, we have reduced her pain medication.
There is a great book that explains amplified pain well "Conquering Your Child's Chronic Pain." You can get it on Amazon. It explains how chronic pain really needs to be treated differently from acute pain - for example, instead of having your child rest every time he's in pain, he should actually stay busy. He should go to school - it will keep his brain distracted and lessen the pain.
The goal is to keep his life as normal as possible. To push through the pain. It sounds horrible and hard and even cruel, but I can honestly tell you it works. My daughter was like your son - she missed so much school in high school. It didn't help anything - it just made her more isolated and stressed out.
The one caveat is that you should make sure that his IBD is under control before you pursue this approach. Has he had a pillcam recently? Or an MRE? Those are more accurate tests than a SBFT.
I would definitely have him continue to see a psychologist - preferably one that has experience with children with chronic pain. Usually when you see pain management, they will have a psychologist on staff that works with these kids. Anxiety and depression do worsen pain so it's very important to see a psychologist.
If he does have amplified pain, I wouldn't expect pain free days. I know this all sounds crazy and as moms, we just want to take the pain away. But this is the best approach for chronic pain and it really does work. Just keep things normal and try to get to pain management as soon as possible.
I would look for a pediatric pain management program specifically - most children's hospitals have them now.
Good luck!
We didn't do the MRE this time because the doctor felt the only thing it may be would show on the other test plus my son can be quite convincing and begged us. It to put him through the MRE again. I just got home from work now my son has a virus low grade fever cough and congestion but is in so much pain in his stomach too. Walking slow and on couch. Thank you so much for your help and support.
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
This seems like an elementary question but what are his symptoms of IBD. Does he tend toward diarrhea or constipation? If constipation do you know the last time he went to the bathroom? Hard with a teen I know. They aren't very forthcoming with discussing bodily issues. Constipation could be pretty debilitating.
He mostly has pain and nausea. He has also had bleeding since the new year. He has never had a pull cam. I will ask. Being on the Uceris has made him moody and hungry and bloated but that has reduced the diarrheah which is one of his symptoms. Based on the tests he should be feeling great. He does not have constipation. I will get the book. I am looking into the pain clinic at our hospital Ann and Robert Luries Children's Hospital Chicago and will also try Cinncinati hospital but I'm not sure I can afford three weeks off work. Thank you all for all the advice and help!
- Joined
- Jul 2, 2013
- Messages
- 6,750
It doesn't have to be inpatient - some kids do very well with outpatient therapy. Usually they would start with outpatient and then kids would do not improve go on to do inpatient therapy.
There is also often a long waiting list, so it may be quite a while.
I believe Cincinnati Children's has a good pain program. I don't know about the other hospital, but I'm sure it does too.
If the nausea is after meals, you may want to look into Gastroparesis too. That is delayed gastric emptying. Symptoms are early satiety (getting full after a few bites of food), nausea, pain, weight loss and vomiting. Not every kid has every symptom obviously, but if that sounds familiar, then it may be worth asking about.
There is also often a long waiting list, so it may be quite a while.
I believe Cincinnati Children's has a good pain program. I don't know about the other hospital, but I'm sure it does too.
If the nausea is after meals, you may want to look into Gastroparesis too. That is delayed gastric emptying. Symptoms are early satiety (getting full after a few bites of food), nausea, pain, weight loss and vomiting. Not every kid has every symptom obviously, but if that sounds familiar, then it may be worth asking about.
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
Uceris is a steroid. If he is needing a steroid to control his symptoms then it doesn't seem to me he is in remission. My younger daughter was on Budesonide (Uceris is Budesonide) and I know some GI's use it for quite an extended period (much less side effects and systemic issues than prednisone) but still the goal is to get the kids off it as soon as possible.
Bleeding? How much? Just a little and bright red could be fissures etc but more than that combined with the fact that he is needing a steroid and I am guessing he isn't quite to remission.
Not a doc. Just a mother who has been at this for 5 years and with two daughters. I would be looking for a second set of eyes to look at the situation. Another GI could look at everything...IBD, IBS, Gastroparesis, Celiac etc, etc.
Stomach pain is the worst:ymad:
Bleeding? How much? Just a little and bright red could be fissures etc but more than that combined with the fact that he is needing a steroid and I am guessing he isn't quite to remission.
Not a doc. Just a mother who has been at this for 5 years and with two daughters. I would be looking for a second set of eyes to look at the situation. Another GI could look at everything...IBD, IBS, Gastroparesis, Celiac etc, etc.
Stomach pain is the worst:ymad:
He is on the Uceris to get rid of the last bit of inflammation and Pentada would have worked but he couldn't take the pills and when he did felt sick so he is taking this only 3 weeks so far. He's also taking an inhaler for the EOE. Our doctor is good but things move slow. I'll ask for the Pill Cam. On the x-ray the small bowel was slow to empty to the colon but they said that was okay. I will ask about gastroparesis, Thanks for all this wonderful information .
- Joined
- Jul 2, 2013
- Messages
- 6,750
I think it's definitely worth seeing pain management - I'd make an appt. because it may take quite a while to get in (a month or more).
I would also talk to your doctor about other options - Crohn's in his small bowel. A SBFT may miss inflammation, and with a pillcam they can actually "see" the mucosa. That said, pillcams aren't perfect, and they can also miss ulcerations if they're pointed a certain way, but it's a pretty good test.
Fairly easy but he does need to be able to swallow a big pill - about the size of a Pentasa capsule. For some kids they will place the pill with an endoscope into the duodenum, so that it doesn't just sit in the stomach for a while, especially if he does have delayed gastric emptying. My daughter did it before we knew she had Gastroparesis, so it sat in her stomach for 3 hours before it even made it to her small bowel! In the future, we'll place it in her duodenum during the scope. But many kids do fine with swallowing it.
I would even think about getting a second opinion GI to weigh in. There are some hospitals that will do a record review without actually seeing him, so you wouldn't have to travel. I think Boston Children's does that. If you are willing to travel, Cincinnati Children's, Boston Children's and CHOP are the three big IBD centers.
I would also talk to your doctor about other options - Crohn's in his small bowel. A SBFT may miss inflammation, and with a pillcam they can actually "see" the mucosa. That said, pillcams aren't perfect, and they can also miss ulcerations if they're pointed a certain way, but it's a pretty good test.
Fairly easy but he does need to be able to swallow a big pill - about the size of a Pentasa capsule. For some kids they will place the pill with an endoscope into the duodenum, so that it doesn't just sit in the stomach for a while, especially if he does have delayed gastric emptying. My daughter did it before we knew she had Gastroparesis, so it sat in her stomach for 3 hours before it even made it to her small bowel! In the future, we'll place it in her duodenum during the scope. But many kids do fine with swallowing it.
I would even think about getting a second opinion GI to weigh in. There are some hospitals that will do a record review without actually seeing him, so you wouldn't have to travel. I think Boston Children's does that. If you are willing to travel, Cincinnati Children's, Boston Children's and CHOP are the three big IBD centers.
- Joined
- Apr 15, 2012
- Messages
- 14,792
Have you called any of the places on stop the pain
http://stopchildhoodpain.org
http://my.clevelandclinic.org/childrens-hospital/specialties-services/therapy-rehab/pain-rehab
http://www.amazingkids.org/Medical-Services/pain-rehabilitation
As far as EoE
Are you on a top eight elemination diet (free of milk eggs wheat soy fish shellfish peanuts and tree nuts )?
Have you tried formula only adding in one food at a time and scoping after 1-3 food adds?
Oral swallowed steroids work for some but not most
Most need top eight free and some even more
Please join the Egid group of parents in kfa
They can help you navigate the EoE side of things which can cause a lot of pain
https://community.kidswithfoodallergies.org/forum/gastrointestinal-disorders
Getting EoE under control is tricky and can cause a lot of pain
Have you seen an EoE specialist ?
Top in the country would be cchmc (center for eosinophilic disorders )
-Cincinnati children's
Next would be national Jewish (Denver Colorado)
EoE like Crohns is a journey and takes time to find the right fix
You really need a specialist in EoE plus someone to work with you to get your kiddo to a better place
Fwiw formula only would heal both Crohns and EoE
Have you gotten a second opinion GI at another hospital since he is on higher dose remicade but low dose mtx -
Ds is on 17.5 mg of mtx a week plus humira every 5 days
http://stopchildhoodpain.org
http://my.clevelandclinic.org/childrens-hospital/specialties-services/therapy-rehab/pain-rehab
http://www.amazingkids.org/Medical-Services/pain-rehabilitation
As far as EoE
Are you on a top eight elemination diet (free of milk eggs wheat soy fish shellfish peanuts and tree nuts )?
Have you tried formula only adding in one food at a time and scoping after 1-3 food adds?
Oral swallowed steroids work for some but not most
Most need top eight free and some even more
Please join the Egid group of parents in kfa
They can help you navigate the EoE side of things which can cause a lot of pain
https://community.kidswithfoodallergies.org/forum/gastrointestinal-disorders
Getting EoE under control is tricky and can cause a lot of pain
Have you seen an EoE specialist ?
Top in the country would be cchmc (center for eosinophilic disorders )
-Cincinnati children's
Next would be national Jewish (Denver Colorado)
EoE like Crohns is a journey and takes time to find the right fix
You really need a specialist in EoE plus someone to work with you to get your kiddo to a better place
Fwiw formula only would heal both Crohns and EoE
Have you gotten a second opinion GI at another hospital since he is on higher dose remicade but low dose mtx -
Ds is on 17.5 mg of mtx a week plus humira every 5 days
- Joined
- Apr 15, 2012
- Messages
- 14,792
Inhaled steroids for EoE
Doesn't work for a large number of kids
Unfortunately
Some need both inhaled and top eight free
Some need inhaled and formula only and barely get a few foods back
So please prepare yourself
It's not a pretty disease
Doesn't work for a large number of kids
Unfortunately
Some need both inhaled and top eight free
Some need inhaled and formula only and barely get a few foods back
So please prepare yourself
It's not a pretty disease
I think his Mtx is lower because he had liver problems on it in the fall. His pain is around belly button not upper so we think his EOE is not the cause of pain but will look into it. He did not show EOE on his first scope in 7/2015 and it appeared now after he's been off singular my gut is telling me the singular kept it in check. He showed no symptoms of signs of EOE so I'm on the fence about it. I will look more into it. Thanks for the info. It is invaluable.
- Joined
- Apr 15, 2012
- Messages
- 14,792
Singular is a luekotriene used to treat mild asthma and allergies
It does not treat EoE
There are different types of egids
Including the stomach and intestine not just the esophagus
Having no symptoms doesn't rule out EoE
It just makes it harder to treat
As much as he has going on
Please get a second opinion at one of the places mentioned that specialize in egids
It does not treat EoE
There are different types of egids
Including the stomach and intestine not just the esophagus
Having no symptoms doesn't rule out EoE
It just makes it harder to treat
As much as he has going on
Please get a second opinion at one of the places mentioned that specialize in egids
- Joined
- Apr 15, 2012
- Messages
- 14,792
Having an EoE clinic doesn't mean they are the tops in the country
Your kiddo is complicated
Your GI should have referred to the EoE clinic at the onset
Not you needing to ask
Your kiddo is complicated
Your GI should have referred to the EoE clinic at the onset
Not you needing to ask
He said his EOE could be managed by him and he consulted the EOE doctors for us. He gave us the option but I chose not to add another doctor. We had another GI before him that wasn't as specialized and he also met with him. The hospital is downtown we don't live close. He also told us this pain is not from the EOE the location is from the inflammation that the remicade didn't work on which is now being treated by Uceris. I have messaged the doctor and head nurse. They asked me to make an appointment st the pain clinic, the doctor will also visit us at the infusion center Friday if he can and I will ask more questions about EOE. I think his issues currently are the IBD not EOE. But I will not ignore the EOE.
- Joined
- Apr 15, 2012
- Messages
- 14,792
One cool thing I forgot to mention
Cincy children's will do a records review
Without you actually going first
Then they can determine if your kiddo would fit their program
We have done this when other thought Ds had EoE
Turns out he didn't
Cincy let us know and no trip needed
But still got their opinion
Cincy children's will do a records review
Without you actually going first
Then they can determine if your kiddo would fit their program
We have done this when other thought Ds had EoE
Turns out he didn't
Cincy let us know and no trip needed
But still got their opinion
- Joined
- Jul 2, 2013
- Messages
- 6,750
I think since he is so complex, a second opinion is a good idea - for both EoE and IBD.
Since he can't increase the Methotrexate dose and he does have inflammation low down, another option might be to add a 5-ASA or steroid enema. Not pleasant, and most kids don't like them, but it might work. That's another thing you could ask about.
Sending hugs - please keep us updated and let us know what your GI says on Friday.
Since he can't increase the Methotrexate dose and he does have inflammation low down, another option might be to add a 5-ASA or steroid enema. Not pleasant, and most kids don't like them, but it might work. That's another thing you could ask about.
Sending hugs - please keep us updated and let us know what your GI says on Friday.
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
I am also thinking there is more going on with the IBD at this time. However, I am thinking the stomach pain is probably coming from inflammation higher up in the tract (small bowel, TI).
One of my daughter's has mostly small bowel and TI disease and she experiences pain when flaring. My other daughter with mostly colonic disease never has abdominal pain.
The daughter with mostly colonic disease has a lot of trouble with the terminal area (rectum and sigmoid colon). That is a notoriously hard area to get under control. She is on Remicade also. Many, many people with disease in that location need a 5 ASA (Pentasa etc) both orally and rectally (foam, suppository or enema). My daughter uses the foam. She was very against it at first but after her first dose she realized it is such a small amount and she did it at night so it really wasn't a problem at all.
I know he is young and explaining this is hard but having any inflammation in that area undertreated is really a bad idea and leaves them susceptible to colon cancer down the road.
I would also see what you could do to get better imaging of the small bowel to rule that out as the pain generator. Also talk to the GI about other causes which I am sure you are planning.
Hang in there mama!
One of my daughter's has mostly small bowel and TI disease and she experiences pain when flaring. My other daughter with mostly colonic disease never has abdominal pain.
The daughter with mostly colonic disease has a lot of trouble with the terminal area (rectum and sigmoid colon). That is a notoriously hard area to get under control. She is on Remicade also. Many, many people with disease in that location need a 5 ASA (Pentasa etc) both orally and rectally (foam, suppository or enema). My daughter uses the foam. She was very against it at first but after her first dose she realized it is such a small amount and she did it at night so it really wasn't a problem at all.
I know he is young and explaining this is hard but having any inflammation in that area undertreated is really a bad idea and leaves them susceptible to colon cancer down the road.
I would also see what you could do to get better imaging of the small bowel to rule that out as the pain generator. Also talk to the GI about other causes which I am sure you are planning.
Hang in there mama!
He is so sick today with a virus cough and cold. But his low grade fever is fluctuating and that I've only seen with crohns not viruses., but I hope it's from the virus. He will get bloodwork with his remicade Friday. My son's personality is hard and he is still grieving that he has this. It has been so hard to get him to do certain things. If he is pushed too hard and gets too upset it is stressful and creates more pain. It is a balance and hard to parent a sick child. Thanks for your support and help.
- Joined
- Jul 2, 2013
- Messages
- 6,750
He needs to see a psychologist regularly. It will get better - it just takes time. It took several months of seeing a psychologist before my daughter finally accepted what was happening and took even longer for her to learn how to cope with it. It's a process and he's only a kid - it will take a while.
- Joined
- Apr 15, 2012
- Messages
- 14,792
And the psychologist can help you figure out the right amount of "push"
Since every kid is different
Abiding just avoid the stressful effect will be a thing of the past
Most as Maya142 said need at least weekly visits some need more at first
Since every kid is different
Abiding just avoid the stressful effect will be a thing of the past
Most as Maya142 said need at least weekly visits some need more at first
- Joined
- Apr 15, 2012
- Messages
- 14,792
Flagyl makes everything taste like metal ( very bad per my kiddo )
Even water so be prepared
I think was a few days or doses till that set in
Hope it helps
Even water so be prepared
I think was a few days or doses till that set in
Hope it helps
- Joined
- Jul 2, 2013
- Messages
- 6,750
My kiddo said the same thing - it made everything taste awful and left a metallic taste in her mouth. But for her, that side effect didn't show up till the 6th day or so. So she was able to finish the 10 days.
It actually helped her a LOT when her IBD was flaring.
Good luck!
It actually helped her a LOT when her IBD was flaring.
Good luck!
