Hello I'd like to listen any experiences. My 17 year old brother is always in a very bad position. 2 fustila surgeries and now proctitis with blood. He has constantly mouth ulcers but also throat pain he spits all the time and is in pain. Sometimes he spills blood. He doesn't go to school as he can't even sit in a chair. He's on remicade but remmision is like a week each time tops.also sometimes his eye becomes red and is in pain also..im so sorry for the sheet but every doctor tell us just be patience and its everything is OK which is not..
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SOS. I need any advice..
- Thread starter Irini
- Start date
crohnsinct
Well-known member
How long has he been on Remicade? What dose and frequency is he on? How much does he weigh? Have they taken a levels/antibodies test recently? When was he diagnosed and has he tried any other therapies before Remicade? When he was diagnosed where do they find disease? What were his symptoms?
We can help you more when we know these things.
He is a very lucky young man to have a sister so concerned with his health and quality of life.
Finding the right meds, combo of meds and dosing takes time but he can get to a lasting remission. There are many people with Crohn’s enjoying deep and lasting remission. You just have to keep plugging away at it to find what will actually work.
We can help you more when we know these things.
He is a very lucky young man to have a sister so concerned with his health and quality of life.
Finding the right meds, combo of meds and dosing takes time but he can get to a lasting remission. There are many people with Crohn’s enjoying deep and lasting remission. You just have to keep plugging away at it to find what will actually work.
Hi and welcome! I'm so sorry to hear your brother is not doing well. It sounds like he has been through a lot. It can take some time to find the right medication combination to control the disease. It sounds like you're saying that he only gets relief for a week after Remicade. It would help to know what dose he is on (5 mg/kg? 7.5 mg/kg? Higher?) and how frequent his infusions are. You can go up to 10 mg/kg every 4 weeks and some doctors will even do higher doses.
For the proctitis, has he ever tried rectal therapies? Like suppositories or Proctofoam or enemas? Those can really help.
He needs to see an ophthalmologist when his eye is red - inflammation in the eyes can be very harmful and can cause vision loss if not treated promptly. It sounds like he has iritis if he has pain and redness. Sensitivity to light is another common symptom. It needs to be diagnosed and treated quickly so it does not cause damage.
How is his current pediatric GI? Have you considered a second opinion?
For the proctitis, has he ever tried rectal therapies? Like suppositories or Proctofoam or enemas? Those can really help.
He needs to see an ophthalmologist when his eye is red - inflammation in the eyes can be very harmful and can cause vision loss if not treated promptly. It sounds like he has iritis if he has pain and redness. Sensitivity to light is another common symptom. It needs to be diagnosed and treated quickly so it does not cause damage.
How is his current pediatric GI? Have you considered a second opinion?
Thank you very much for your reply. I don't know the exact dosage because here in Greece they don't tell you they only say that this goes by the kg of the child. He had it every 4 weeks and then when he. Was worse. He had it every 2 weeks but that also wasn't a solution because his hair started falling off because of remicade. Of course we ve. Changed like 4 5 Gi docs trained on chrohns. It just seems that everyone is like that's the therapy we can't do anything else. Also because of proctitis and ulcers in mouth and throat they haven't done a colonoscopy and a gastroscopy in more than a year. Our new doctor said we can have a blood test which says what's the level of the medicine in his blood to. See if he's not accepting it anymore. For proctitis we see another doctor who gave us great tips and he was going better but one day he woke up and it was worse than ever with blood and very irritated area. I'm so sorry for bothering you I just can't believe a young child is in pain every day can't cope with every day life and everyone until now say that that's the therapy and there's nothing else we can do.
Has he got fistulizing Crohn’s? Remicade is generally the go to drug for that but he needs blood test to see if metabolising too fast. I have read some papers that adding certain antibiotics and oxygen therapy can help close fistulas but you might need to seek advice from a specialist- Dr Sanderson at St Guys hospital in London or Dr Borodin in Australia. I’ll try and attach a paper.
I also am aware anecdotally of people with fistula problems doing well in stelara (also called ustekinumab) which is a new drug, costs an arm and a leg so don’t know how your healthcare system works in Greece if he can try it.
There are diet interventions he could try for example university of Massachusetts have a website on IBD AID diet where you start with very soft texture anti inflammatory food and build up, may be worth an experiment with for a few weeks see if it helps him. There is a very helpful Facebook group if he decides to try it.
Poor thing. I hope something helps.
I also am aware anecdotally of people with fistula problems doing well in stelara (also called ustekinumab) which is a new drug, costs an arm and a leg so don’t know how your healthcare system works in Greece if he can try it.
There are diet interventions he could try for example university of Massachusetts have a website on IBD AID diet where you start with very soft texture anti inflammatory food and build up, may be worth an experiment with for a few weeks see if it helps him. There is a very helpful Facebook group if he decides to try it.
Poor thing. I hope something helps.
Sorry that should have read Dr Borody
IBD Anti-Inflammatory Diet
The Center for Applied Nutrition focuses on research of IBD-AID diet and how it can influence the composition of the microbiota and progression of inflammatory bowel disease.
- Location
- Toronto, Canada
I am sorry to hear about your brother. You are a good sister trying to find answers for him. His hair loss could also be from mal nutrition - deficiency in important minerals due to poor absorption. Also, before you rule out Remicade, you have to find out more details - his levels - dosage - the questions that were mentioned in earlier posts. There are other conditions that can result from having Crohn's, and one of them is uveitis (inflammation of the eyes). So from what I understand, your brother's current doctor will be doing a blood test to check levels of Remicade, so that's a good place to start. Remicade has worked great for my son. I do hope that you get answers for your brother. After the levels come back, the doctor can determine if a change is necessary.
crohnsinct
Well-known member
The red eyes can most definitely be an inflammatory condition in the eyes. Keep in mind that inflammatory conditions usually travel together. It is not uncommon at all for kids with IBD to also have iritis or uveitis. My daughter had it and she is not on Remicade. It was just due to all the inflammation in her body and another indicator that her IBD is not under control.
Second what Jo-mom said about the hair loss. It is definitely a very common side effect of Crohn's rather than medication.
At this point, I think you really have to wait and see what the level of the med is in his body when he has his next infusion. What is the dose per kg?
The proctitis is likely just his Crohn's and you shouldn't need another doctor.
Did they do a proper loading schedule with the Remicade?
You really need ALL the facts and to try a few different strategies before abandoning a medication. All research points out that you have your greatest success on your first biologic. The success rate of any of the biologics is not great, Remicade and Humira have the best rate so far. So once you move to another and are no longer biologic naive your chances are even lower.
How long ago was he diagnosed? How many infusions has he had? Has he added an immunomodulator to his therapy such as methotrexate? Was he on steroids at diagnosis or EEN? It takes these drugs a while to build to therapeutic levels and because of this the doctors usually use a heavy hitter such as steroids or EEN to get control over the inflammation quickly but to also give the biologic a better shot at taking over...it is easier for the drugs to maintain a remission than actually induce it sometimes.
For the proctitis there are steroid or 5ASA enemas, suppositories and foams that can help calm that area. They are a game changer for many people with rectal and sigmoid disease.
Second what Jo-mom said about the hair loss. It is definitely a very common side effect of Crohn's rather than medication.
At this point, I think you really have to wait and see what the level of the med is in his body when he has his next infusion. What is the dose per kg?
The proctitis is likely just his Crohn's and you shouldn't need another doctor.
Did they do a proper loading schedule with the Remicade?
You really need ALL the facts and to try a few different strategies before abandoning a medication. All research points out that you have your greatest success on your first biologic. The success rate of any of the biologics is not great, Remicade and Humira have the best rate so far. So once you move to another and are no longer biologic naive your chances are even lower.
How long ago was he diagnosed? How many infusions has he had? Has he added an immunomodulator to his therapy such as methotrexate? Was he on steroids at diagnosis or EEN? It takes these drugs a while to build to therapeutic levels and because of this the doctors usually use a heavy hitter such as steroids or EEN to get control over the inflammation quickly but to also give the biologic a better shot at taking over...it is easier for the drugs to maintain a remission than actually induce it sometimes.
For the proctitis there are steroid or 5ASA enemas, suppositories and foams that can help calm that area. They are a game changer for many people with rectal and sigmoid disease.
Second or third that
Under conditions to watch for
Uvetis ,iritis and epi sceleritis are all associated with. Crohns inflammation regardless of the medication taken .
We have always been told
Yearly eye exams with a medical eye doctor (opthamologist ) are required with a crohns dx
Anytime the eyes are red (not due to allergies ) Ds is to see an eye doctor quickly .
Second or third that
Under conditions to watch for
Uvetis ,iritis and epi sceleritis are all associated with. Crohns inflammation regardless of the medication taken .
We have always been told
Yearly eye exams with a medical eye doctor (opthamologist ) are required with a crohns dx
Anytime the eyes are red (not due to allergies ) Ds is to see an eye doctor quickly .
Under conditions to watch for
Uvetis ,iritis and epi sceleritis are all associated with. Crohns inflammation regardless of the medication taken .
We have always been told
Yearly eye exams with a medical eye doctor (opthamologist ) are required with a crohns dx
Anytime the eyes are red (not due to allergies ) Ds is to see an eye doctor quickly .
Second or third that
Under conditions to watch for
Uvetis ,iritis and epi sceleritis are all associated with. Crohns inflammation regardless of the medication taken .
We have always been told
Yearly eye exams with a medical eye doctor (opthamologist ) are required with a crohns dx
Anytime the eyes are red (not due to allergies ) Ds is to see an eye doctor quickly .
My son got very dry, red eyes as a result of Remicade, and we saw an ophthalmologist about it due to concern that it could be uveitis associated with Crohn's. It turned out that wasn't the problem, and they got completely better shortly after stopping Remicade. So, be careful about diagnosing additional conditions when they could just be caused by treatment for the first.
crohnsinct
Well-known member
crohnsinct
Well-known member
No offense, but If a trained doctor can’t tell the difference then how could a parent?
I think a doctor can tell if there is bonafide inflammation. They use special equipment and look deep into the eye. They know what they are looking at and for. Plus if the IBD is not controlled then you know there is inflammation in the body.
I think we have had this conversation on another thread, if it is not any of the inflammatory eye conditions we mentioned above and maybe just a side effect, it is up to the patient to decide if they are willing to deal with said side effect. For example, there was a time that my daughter’s horrendous psoriasis was thought to be a paradoxical response to Remicade. Since Remicade was controlling her disease at the time, and the risks of uncontrolled Crohns were higher than just dealing with the psoriasis, we decided to keep Remicade and just treat the psoriasis. There are a finite group of therapies used for IBD and first therapy used has the best success rate so we worked around the psoriasis. Glad we did because years later they are now saying it was not a paradoxical response but rather just another inflammatory condition that she would have had anyway. We eventually dropped Remicade and her psoriasis got worse.
I think a doctor can tell if there is bonafide inflammation. They use special equipment and look deep into the eye. They know what they are looking at and for. Plus if the IBD is not controlled then you know there is inflammation in the body.
I think we have had this conversation on another thread, if it is not any of the inflammatory eye conditions we mentioned above and maybe just a side effect, it is up to the patient to decide if they are willing to deal with said side effect. For example, there was a time that my daughter’s horrendous psoriasis was thought to be a paradoxical response to Remicade. Since Remicade was controlling her disease at the time, and the risks of uncontrolled Crohns were higher than just dealing with the psoriasis, we decided to keep Remicade and just treat the psoriasis. There are a finite group of therapies used for IBD and first therapy used has the best success rate so we worked around the psoriasis. Glad we did because years later they are now saying it was not a paradoxical response but rather just another inflammatory condition that she would have had anyway. We eventually dropped Remicade and her psoriasis got worse.
Hmmm…
Red eyes means doctor visit (preferably an ophthalmologist not optometrist)
It’s that simple
Doctors are the ones who make the diagnosis on the cause since they have the training and the degrees —-not parents or the internet .
In my kiddos case
Red eyes are from inflammation present most of the time
They have been due to :
1.)Allergies (his dad has as well )
2.)Sicca syndrome (dry eyes dry mouth -his father has it as well -no ibd for his dad )
3.)Epi scleritis
4.) limbal vernal keratoconjuntivitis (another one his dad has as well )
So the cause can be vastly different even on the same kiddo and the doctors are the one who can diagnosis and treat the issue properly
as always please see an opthamologist for proper dx .
Red eyes means doctor visit (preferably an ophthalmologist not optometrist)
It’s that simple
Doctors are the ones who make the diagnosis on the cause since they have the training and the degrees —-not parents or the internet .
In my kiddos case
Red eyes are from inflammation present most of the time
They have been due to :
1.)Allergies (his dad has as well )
2.)Sicca syndrome (dry eyes dry mouth -his father has it as well -no ibd for his dad )
3.)Epi scleritis
4.) limbal vernal keratoconjuntivitis (another one his dad has as well )
So the cause can be vastly different even on the same kiddo and the doctors are the one who can diagnosis and treat the issue properly
as always please see an opthamologist for proper dx .
crohnsinct
Well-known member
Actually she had a little psoriasis before her IBD diagnosis. It was around her eyes and in her eyebrows. Ironically the GI and her dermatologist said Remicade would make it better but it didn’t. Nor did Humira or a year off anti tnfs. She just has an on fire immune system.
Thanks everyone for your advices. So far the proctictis keeps getting worse even though he tried different creams, cleaning the area etc. And the biggest problem is that his throat is in pain all the time and can't chew. He says his mouth and throat and in so much pain he can't even try a yogurt. I don't know if chrohns can effect throat so much. If you have experience please tell me.
Definitely have an ophthalmologist look at his eyes to see if he has iritis, scleritis or uveitis. That is inflammation in the eyes and can be very harmful - leading to vision loss. Remicade actually treats that, though sometimes a really high dose of Remicade is needed to control eye inflammation (up to 20 mg/kg). They also often prescribe steroid eye drops for iritis or uveitis to control inflammation.
An ophthalmologist will use specialized equipment, a slit lamp, to examine the eye. If there is inflammation present, it needs to be treated promptly. Inflammation of the eyes causing red eyes is very different from red eyes caused by allergies - it truly can cause significant vision loss and even blindness. An ophthalmologist can definitely differentiate between the two. If it is uveitis, then steroid drops, increasing Remicade, adding MTX or trying a different biologic like Humira are all options.
Crohn's can affect the esophagus.
I would ask his doctor how many milligrams of Remicade he's getting. Using that and his weight, you can figure out the dose.
Generally, if a child was not doing well like your brother, in the US they would do scopes to see where the inflammation was and how bad it is. They would also refer your brother to an ophthalmologist to determine whether he has inflammation in his eyes, because that would affect the treatment choices you make. They would also likely try internal rectal therapies for the proctitis - like suppositories.
It's important to figure out how bad the inflammation is/where it is before giving up on Remicade, since there are very few treatment options for kids with Crohn's - really only 4 biologics are used commonly (Remicade, Humira, Entyvio and Stelara). So you don't want to give up on Remicade if a dose increase or more freqeunt infusions might really help.
When he was on Remicade every 2 weeks, were his other symptoms any better -the throat pain or proctitis or bleeding?
An ophthalmologist will use specialized equipment, a slit lamp, to examine the eye. If there is inflammation present, it needs to be treated promptly. Inflammation of the eyes causing red eyes is very different from red eyes caused by allergies - it truly can cause significant vision loss and even blindness. An ophthalmologist can definitely differentiate between the two. If it is uveitis, then steroid drops, increasing Remicade, adding MTX or trying a different biologic like Humira are all options.
Crohn's can affect the esophagus.
I'm not sure why they're telling you this - scopes can usually be done even when there is proctitis. A gastroscopy would be useful to see what is going on in his throat which is causing so much pain.
I would ask his doctor how many milligrams of Remicade he's getting. Using that and his weight, you can figure out the dose.
Generally, if a child was not doing well like your brother, in the US they would do scopes to see where the inflammation was and how bad it is. They would also refer your brother to an ophthalmologist to determine whether he has inflammation in his eyes, because that would affect the treatment choices you make. They would also likely try internal rectal therapies for the proctitis - like suppositories.
It's important to figure out how bad the inflammation is/where it is before giving up on Remicade, since there are very few treatment options for kids with Crohn's - really only 4 biologics are used commonly (Remicade, Humira, Entyvio and Stelara). So you don't want to give up on Remicade if a dose increase or more freqeunt infusions might really help.
When he was on Remicade every 2 weeks, were his other symptoms any better -the throat pain or proctitis or bleeding?
My son was on remicade and had two dose increases, and after each dose increase problems similar to the description in the OP (eyes, throat, and perianal region) got worse. We were told to try a third dose increase despite the fact that the problems had increased after each dose increase, and we declined and instead stopped Remicade. It turned out that all these problems got better after stopping Remicade. Doctors aren't always correct.
This is just my experience and obviously I can't diagnose the situation in the OP, but be aware that sometimes dose increases make things worse rather than better. These drugs can and do have paradoxical effects.
This is just my experience and obviously I can't diagnose the situation in the OP, but be aware that sometimes dose increases make things worse rather than better. These drugs can and do have paradoxical effects.
In case you're wondering, here's a reference regarding paradoxical uveitis caused by infliximab: https://pubmed.ncbi.nlm.nih.gov/31355342/
(glad to see at least some of the medical industry catching up on this)
(glad to see at least some of the medical industry catching up on this)
I also wondered if we are assuming throat pain is Crohn’s could it be something else like strep throat? I have had little infections here and there since being on biologics. Has a doctor had a look at him recently?
- Location
- Toronto, Canada
@Pangolin - interesting article but the end result was...
"Conclusion: Uveitis rarely occurs de novo or is exacerbated during infliximab treatment. Cessation of infliximab led to resolution of this paradoxical adverse effect"
Still, the only way to know what's happening is by having this young person checked out by the professionals. We can all guess but we all agree that more medical attention is needed, and hopefully it is dealt with.
@Irini - please keep us posted on your brother.
"Conclusion: Uveitis rarely occurs de novo or is exacerbated during infliximab treatment. Cessation of infliximab led to resolution of this paradoxical adverse effect"
Still, the only way to know what's happening is by having this young person checked out by the professionals. We can all guess but we all agree that more medical attention is needed, and hopefully it is dealt with.
@Irini - please keep us posted on your brother.
Agree with Delta_hippo
Some kids get “thrush” or yeast infection in the mouth and throat from lower immune system .
another thing is there are diseases that “mimic” crohns
One of those is bechets which cause eye inflammation, horrible ulcers in the mouth and throat and Gi issues plus other stuff ..
maybe revisit a rheumatologist (they treat bechets and other immune disorders that mimic crohns )
uceris foam has helped my kiddo - rectal issues take the longest to heal .
throat wise definitely see the doc again
Formula only (modulen ,peptamen,vionex etc..) with no solid food can help some when meds are not enough
-known as exclusive enteral nutrition (een)
My kiddo did this more than once while on remicade and later on humira
17 is a little harder to convince though
Some kids get “thrush” or yeast infection in the mouth and throat from lower immune system .
another thing is there are diseases that “mimic” crohns
One of those is bechets which cause eye inflammation, horrible ulcers in the mouth and throat and Gi issues plus other stuff ..
maybe revisit a rheumatologist (they treat bechets and other immune disorders that mimic crohns )
uceris foam has helped my kiddo - rectal issues take the longest to heal .
throat wise definitely see the doc again
Formula only (modulen ,peptamen,vionex etc..) with no solid food can help some when meds are not enough
-known as exclusive enteral nutrition (een)
My kiddo did this more than once while on remicade and later on humira
17 is a little harder to convince though
Oh and the pharmacist/chemist can sometimes suggest things to use to coat the mouth /throat
Provided it’s not an infection .
So Gi may use carefate or a mix of anti acid (maloax in US ) plus other things to coat the throat ease the pain
Provided it’s not an infection .
So Gi may use carefate or a mix of anti acid (maloax in US ) plus other things to coat the throat ease the pain
I was also thinking about Sucralfate/Carafate - it's used to coat the stomach for stomach ulcers or inflammation in the stomach (gastritis). I'm guessing it may also help if there are ulcers in his throat.
I was also thinking thrush (yeast infection) because of the throat pain. But your brother really needs to see a doctor to figure out what is going on. If your current pediatric GI won't scope and is not being helpful, I would encourage you to keep looking for a new doctor. It's really difficult to know what it is causing the pain without recent scopes or an MRE (has he ever had an MRE?).
Some of the parents above mentioned EEN - formula only, no food, usually for 6-8 weeks but could be longer. It's usually used to get the child into remission, because medications take a while to kick in. Some kids continue with supplemental formula after the initial 6-8 weeks, but add back food, slowly. There are many different kinds of formula - some kinds are easier to drink than others. It is definitely difficult to convince a teen to give up food entirely for 6-8 weeks, but since he's so miserable and can't really eat, it might be easier to convince him to give it a try. There are lots of tips and tricks to make formula easier to drink, which we can tell you, if he and his GI decide to try EEN.
Since he has such bad throat pain, has he seen his pediatrician or GP? Have they swabbed his throat and done a culture to see if there is an infection - strep, staph etc.? My daughter once got a staph infection in her throat, which is uncommon, and it caused a lot of pain. In her case, it was caused by one of the immunosuppressants she was on (Azathioprine).
I was also thinking thrush (yeast infection) because of the throat pain. But your brother really needs to see a doctor to figure out what is going on. If your current pediatric GI won't scope and is not being helpful, I would encourage you to keep looking for a new doctor. It's really difficult to know what it is causing the pain without recent scopes or an MRE (has he ever had an MRE?).
Some of the parents above mentioned EEN - formula only, no food, usually for 6-8 weeks but could be longer. It's usually used to get the child into remission, because medications take a while to kick in. Some kids continue with supplemental formula after the initial 6-8 weeks, but add back food, slowly. There are many different kinds of formula - some kinds are easier to drink than others. It is definitely difficult to convince a teen to give up food entirely for 6-8 weeks, but since he's so miserable and can't really eat, it might be easier to convince him to give it a try. There are lots of tips and tricks to make formula easier to drink, which we can tell you, if he and his GI decide to try EEN.
Since he has such bad throat pain, has he seen his pediatrician or GP? Have they swabbed his throat and done a culture to see if there is an infection - strep, staph etc.? My daughter once got a staph infection in her throat, which is uncommon, and it caused a lot of pain. In her case, it was caused by one of the immunosuppressants she was on (Azathioprine).