New diagnosis of UC and Enteropathic Arthritis

[Bespectacledberries]

Hi, I’m 19 and was diagnosed with ulcerative colitis in January during a 10 day hospital stay for diarrhea, nausea, vomiting, and severe abdominal pain. Originally they put me on mesalamine both orally and rectally (in addition to prednisone) and while my symptoms did improve I never stop seeing blood in my stool and after getting home from the hospital I noticed joint pain in my hips first but then in my knees and ankles. After I started having debilitating flairs of joint pain especially at night and in the morning I saw a rheumatologist who told me I probably have enteropathic arthritis and that at my next GI appointment we could discuss switching my meds to something that would help the joint pain more. I’m now on inflectra and methotrexate, and while my digestive symptoms are much better, my joint pain doesn’t seem to be improving. Does anyone have any tips for helping with joint pain? My doctor told me to stay away from NSAIDs and Tylenol doesn’t seem to help.

 

[my little penguin]

How long since you have been on inflectra and methotrexate?
What has your Rheumo said ?
My kiddo has juvenile spondyloarthritis associated with ibd that flares independently of his crohns .
Also how often are you getting inflectra /dose ?
My adult child (now 20 was dx at age 7)
Is on Stelara plus methotrexate.
He also takes Celebrex as well
It’s a nsaid that is gentle on GI tract
His Gi isn’t thrilled he is on it
But his arthritis is moderate to severe and his crohn is mild .
He has been on Celebrex for years and still has clean scopes
That said he has a max dose -above that dose he gets bloody diarrhea.
Definitely go back to the rheumatologist
They need to be steering the ship.

 

[cheka]

prednisone for the joints/pain. doc is right - stay away from nsaid. you have a gut issue and nsaid makes it worse. until you get the prednisone try not to eat much - and keep it light/clean if you do eat. there's often a link between flaring joint pain and eating. ice can help the pain sometimes

i had a similar situation -- terrible pain at night, swelling, red, hot knees, ankles, elbow, shoulder.....waited way too long to go to doc. doc hit me with the prednisone and it all chilled down. it was amazing. i suffered for many months taking nsaid, etc. it just got worse and worse....

then worked on my gut to resolve it for good and slowly reduced the prednisone to zero. no more arthritis for 2ish years now. repaired my gut dysbiosis and leaky gut, still eat like that today

 

[Bespectacledberries]

How long since you have been on inflectra and methotrexate?
What has your Rheumo said ?
My kiddo has juvenile spondyloarthritis associated with ibd that flares independently of his crohns .
Also how often are you getting inflectra /dose ?
My adult child (now 20 was dx at age 7)
Is on Stelara plus methotrexate.
He also takes Celebrex as well
It’s a nsaid that is gentle on GI tract
His Gi isn’t thrilled he is on it
But his arthritis is moderate to severe and his crohn is mild .
He has been on Celebrex for years and still has clean scopes
That said he has a max dose -above that dose he gets bloody diarrhea.
Definitely go back to the rheumatologist
They need to be steering the ship.

I got my first dose March 4th and I am scheduled for my third on the 29th and my dose is 100mg/10ml. When I reached out to my rheumatologist I was told I need to wait for the medication to build up in my system and if we still don’t see any improvement then we can discuss it. I was told I should continue to avoid NSAIDs if at all possible and that because my flair was so bad it could be taking a while for the inflammation of the joints to subside. But this is the reply I got from messaging so I might see if I can make an appointment after my next dose that way I can ask more questions.

 

[my little penguin]

Three doses are the start up doses so you do need to wait to see
Also you need to add
Physical therapy
Water therapy (swimming warm water pools)
Use heating pads ,tens units,
Depending on the joints involved there are different strengthening tools

I did want to add
Over the counter nsaids are to be avoided
What my kiddo takes is prescription and both his Gi and rheumatologist agreed for him to use it .

 

[Bespectacledberries]

prednisone for the joints/pain. doc is right - stay away from nsaid. you have a gut issue and nsaid makes it worse. until you get the prednisone try not to eat much - and keep it light/clean if you do eat. there's often a link between flaring joint pain and eating. ice can help the pain sometimes

i had a similar situation -- terrible pain at night, swelling, red, hot knees, ankles, elbow, shoulder.....waited way too long to go to doc. doc hit me with the prednisone and it all chilled down. it was amazing. i suffered for many months taking nsaid, etc. it just got worse and worse....

then worked on my gut to resolve it for good and slowly reduced the prednisone to zero. no more arthritis for 2ish years now. repaired my gut dysbiosis and leaky gut, still eat like that today

I was on prednisone until about 2 weeks ago and I didn’t notice much of a difference when I stopped, though I had already started tapering a few weeks before that. I am on a fairly restrictive diet at the moment, I don’t eat gluten or dairy. I also don’t have caffeine or anything with a lot of sugar or fat and I don’t have any artificial sweeteners as was recommended to me by a dietitian. I’m reluctant to go back on steroids because I got headaches while I was on them and generally did not feel great. If it continues to be this bad I will have to talk to my doctor about it but I would be interested in any solution in the mean time. Thank you

 

[my little penguin]

Diet never helped my kiddo for arthritis unfortunately.
Steriods can have side effects
He has used them when necessary
Warm water /heating pads does help
If it’s your hands parafin wax with oven mitts helps

 

[Bespectacledberries]

Thabk

Three doses are the start up doses so you do need to wait to see
Also you need to add
Physical therapy
Water therapy (swimming warm water pools)
Use heating pads ,tens units,
Depending on the joints involved there are different strengthening tools

I did want to add
Over the counter nsaids are to be avoided
What my kiddo takes is prescription and both his Gi and rheumatologist agreed for him to use it .

Thank you! I will definitely look to see if there is a pool near me or something like that. My mom wants me to try acupuncture, is that something you would also recommend?

 

[my little penguin]

We have not tried acupuncture.
Your rheumatologist can prescribe the pt .
Just talked to my son
He said hot tubs also help a lot but public ones can be gross

 

[cheka]

I was on prednisone until about 2 weeks ago and I didn’t notice much of a difference when I stopped, though I had already started tapering a few weeks before that. I am on a fairly restrictive diet at the moment, I don’t eat gluten or dairy. I also don’t have caffeine or anything with a lot of sugar or fat and I don’t have any artificial sweeteners as was recommended to me by a dietitian. I’m reluctant to go back on steroids because I got headaches while I was on them and generally did not feel great. If it continues to be this bad I will have to talk to my doctor about it but I would be interested in any solution in the mean time. Thank you

might have to up the dose to tamp it down. then start tapering again. are the joints warm to the touch and/or red?

 

[Bespectacledberries]

my knees do get red and hot but I haven’t really noticed that with my hips or ankles. My feet also will get red but they are usually very cold, I have pain in my feet especially if I do any walking and I don’t know if that might also be related.

 

[cheka]

my knees do get red and hot but I haven’t really noticed that with my hips or ankles. My feet also will get red but they are usually very cold, I have pain in my feet especially if I do any walking and I don’t know if that might also be related.

here's how it goes down -- leaky gut allows toxics into the blood. body sees those molecules in the blood and surrounds them. then it removes them from the blood, stashing them wherever it decides -- if it stashes in joints (inflammatory arthritis) or if stashed in muscles (fibromyalgia). those are just two common examples -- there are other stash spots too. a different system sees the weird stuff in the joints/mucles and starts attacking them. this process is life saving -- the blood is sacred space and must be prioritized for our survival

in the short term you need to tamp down the inflammation by hampering the immune response. the longer that takes, the more damage to the joints. in the long term need to work on leaky gut, aka intestinal permeability. fixing that will keep the toxics out of the blood - and the arthritis stuff disappears

with ibd symptoms it's a challenge to heal the gut liner. the bad guys have set up shop in that liner and some of them are resistant to antibiotics or have methods that insulate them from antibiotics. imo the way to attack the bad guys is through bolstering the good guys while suppressing the bad guys. this exact process has yet to be perfected, but our researchers are learning more and more every day. it behooves us to keep up with the newest research, it's where the best info is. pubmed and similar websites are where to find the new/best info. i have been posting some of this research in our research section.

 

[my little penguin]

Unfortunately I do not agree with @cheka
Arthritis is not from leaky gut
Been dealing with my son’s arthritis for many years as well as my husbands .
Inflectra can work when combined with methotrexate.
It just takes time weeks to months -not days .
Until then
Heated foot baths (the one with bubbles ) really helped my kiddo s feet .
Ask your rheumatologist about volteran gel for the knees
Ice also helps
Orthotics (shoe inserts ) can also help knees /ankles /feet

tagging @Maya142 I know I forgot a few tips
My kiddo has been good for arthritis for years with only blips now and again
But before his meds kicked in was in a wheelchair for a while due to knee /ankle pain
So with the right meds it’s possible to be in a good place (currently doing the college thing)

 

[Jo-mom]

Hi - my son was 19 when he was diagnosed with enteropathic arthritis. He started remicade shortly after and it did wonders for both his crohn's and arthritis. He also did go to physiotherapy a couple times a week for quite a few months which helped - as well as hot epsom salt baths. It gets better! My son is now 25 and is still on remicade and also MTX. And also, my son also did get orthotics too.

 

[cheka]

thought this was interesting -- infliximab (remicade and inflectra) work by changing the microbiome. so does methotrexate. this is why it takes so long to work - as it's the same time frame as probiotics/prebiotics to work. takes time to change the profile of a microbiome that is a trillion strong

perhaps use the drugs as a jump start to building a legitimate healthy microbiome with eating/supplementing strategies?

https://pubmed.ncbi.nlm.nih.gov/32143438/

 

[Bespectacledberries]

Unfortunately I do not agree with @cheka
Arthritis is not from leaky gut
Been dealing with my son’s arthritis for many years as well as my husbands .
Inflectra can work when combined with methotrexate.
It just takes time weeks to months -not days .
Until then
Heated foot baths (the one with bubbles ) really helped my kiddo s feet .
Ask your rheumatologist about volteran gel for the knees
Ice also helps
Orthotics (shoe inserts ) can also help knees /ankles /feet

tagging @Maya142 I know I forgot a few tips
My kiddo has been good for arthritis for years with only blips now and again
But before his meds kicked in was in a wheelchair for a while due to knee /ankle pain
So with the right meds it’s possible to be in a good place (currently doing the college thing)

Thank you I will try all that out. Do you have any recommendations for orthotics?

 

[cheka]

small study shows bifid bacteria determine effectiveness of infliximab. this supports the body of work that i've posted at this site. some (all?) of the leading drugs for crohns do exactly what i've been advocating for - targeting/modifying gut dysbiosis. it's telling that infliximab doesnt work without bifids.

the major difference in the two similar strategies - side effects. horrible long term effects with drugs, incredible body-wide beneficial benefits of doing it naturally. a combination therapy seems complimentary -- drugs to reduce short term trauma, body-friendly microbiome strategies for long term

enlightening, no? recommending these drugs = recommending working on gut dysbiosis

https://academic.oup.com/ibdjournal/article/29/1/116/6679143

 

[cheka]

these guys find the same - inliximab modifies the dysbiotic microbiome towards a healthier mix of bugs. also claim to be able to predict infliximab outcomes based on the patient's microbiome

i should've done this research before today. it ties us all together - dysbisosis as the cause and the fix -- same for the popular ibd drugs and for the natural ways to repair the gut. this is big and encouraging -- the drugs could help us achieve the ultimate goal - making the ibd symptoms disappear forever, drug free

probably going to start a thread in the research section to bring this to the membership. this thread isnt the place.

https://journals.asm.org/doi/10.1128/msystems.00188-17
We found that imbalanced microbial diversity and reduced Clostridiales abundance in CD patients were restored in patients who responded to infliximab treatment. Moreover, the use of the gut microbiota, alone or together with calprotectin and CDAI data, enabled more-effective prediction of infliximab treatment outcomes, although more samples are needed to confirm and improve this model before it can serve in clinical practice.

 

[my little penguin]

Your rheumatologist can write a script for custom orthotics.
My son has just used dr schols
Sometimes just the gel heel cup other times the full insert
If his ankles hurt more than he choses more of a basketball high top shoe
If he is walking more (a lot around campus ) then just a small amount of ankle support -he found the high top was cause pain in the top of the foot when he walked alot .
He has used ankle /knee braces as well .
The foot bath definitely helped .

 

[my little penguin]

Please note the poster encouraging naturopathic ways was never diagnosed with crohns by any medical doctor or naturopathy doctor.
Poster is self diagnosed from the internet and self “cured” of Crohn’s disease by kitchen experiments .
Nothing has been confirmed tested or monitored.
Please verify with your personal GI for advice before changing any treatments

 

[cheka]

Please note the poster encouraging naturopathic ways was never diagnosed with crohns by any medical doctor or naturopathy doctor.
Poster is self diagnosed from the internet and self “cured” of Crohn’s disease by kitchen experiments .
Nothing has been confirmed tested or monitored.
Please verify with your personal GI for advice before changing any treatments

kitchen experiments? lol, they are backed by thousands of hours of personal research and ibd symptoms and inflammatory arthritis disappearing forever. my target from day one on this forum has been gut dysbiosis. now i've discovered that the drugs you and other members recommend help ibd symptoms by improving gut dysbiosis. welcome to team dysbiosis, there is no escape

glad to put the dysbiosis argument to bed, drug users need to know that we are working the same angle --- showing proof of the drugs' microbiome actions in this thread:

https://crohnsforum.com/threads/methotrexate-inflectra-remicade-are-drugs-for-dysbiosis.87485/

 

[nofun]

We all did some 'personal research' but what value does it bring to others if never reviewed and tested?

Maybe to provide some inspiration if contained in a separate thread where you describe your story, but certainly not answering medical questions or providing advice. I think it would be beneficial to read about your personal research in a separate thread. This way, it is available for those interested in alternative perspectives while maintaining a clear distinction from medically endorsed advice. I would read it.

 

[Bespectacledberries]

Please note the poster encouraging naturopathic ways was never diagnosed with crohns by any medical doctor or naturopathy doctor.
Poster is self diagnosed from the internet and self “cured” of Crohn’s disease by kitchen experiments .
Nothing has been confirmed tested or monitored.
Please verify with your personal GI for advice before changing any treatments

Thanks, it can be really overwhelming when people have so many solutions

Your rheumatologist can write a script for custom orthotics.
My son has just used dr schols
Sometimes just the gel heel cup other times the full insert
If his ankles hurt more than he choses more of a basketball high top shoe
If he is walking more (a lot around campus ) then just a small amount of ankle support -he found the high top was cause pain in the top of the foot when he walked alot .
He has used ankle /knee braces as well .
The foot bath definitely helped .

I have sent a message to my rheumatologist about pt but I will see about adding a note regarding inserts. I have been looking at trying a brace or something especially since my ankles have been give me a lot of trouble but I read it can make things worse long term because you don’t strength the muscles. I’m wondering if that’s really a concern and if I should talk to my rheumatologist before trying anything?

 

[my little penguin]

Definitely talk to your rheumatologist before using a brace
Everyone is different
My kiddo used a brace (allowed by his rheumatologist) but was also doing ankle exercises for strength and range of motion given by his rheumatologist.
The doc will be able to tell you when it’s ok to brace /the type /how long etc..
Plus what exercises to do at home

 

[Bespectacledberries]

I take my methotrexate on Monday and I often feel tired for two or three days after taking it. I also a have little to no appetite, it does improve throughout the week but never goes back to “normal”. From what I read these are common side effects and my rheumatologist didn’t seem concerned when I mentioned it. Do these side effects ever go away or improve? I lost about 30 pounds leading up to my diagnosis (mostly in close to 2 week where I was vomiting and not eating). While on prednisone I did regain a little of the weight but since I stopped taking it I have lost it all and then some. Because I’m still a healthy weight my doctors have not expressed concern but I feel as though I shouldn’t have to wait till I am at a concerning weight do something about it.

 

[my little penguin]

Are you taking folic acid ?
Dose of methotrexate?
Oral or injection ?
Some do better with pills and some do better with injection .
My kiddo was tired flu like for 5-6 days on injections.
Only tired for 1-2 days on oral but he has a max dose where the symptoms are bearable .
Folic acid helps.
Try boost /carnation instant breakfast etc…
My kiddo has to drink 2 a day to maintain weight in addition to eating
Inflammation/chronic disease requires extra calories
So he has supplemented with peptamen jr ,neocate jr ,boost , and now carnation instant breakfast since age 7.
Talk to your rheumatologist

 

[Bespectacledberries]

I’m on 10Mg orally and I do take folic acid and other b vitamins. I was drinking boost in the hospital but I didn’t like the flavor though I think I only tried boost breeze so I will look into carnation instant breakfast. I’m looking to make an appointment with my rheumatologist but it can be difficult to get one and to get in contact. Thank you

 

[my little penguin]

10 mg isn’t much but as i said some do better with injections of mtx instead of pills
My kiddo tajes 20 mg orally.
Any over the counter shake can help with extra calories.

 

[Bespectacledberries]

10 mg isn’t much but as i said some do better with injections of mtx instead of pills
My kiddo tajes 20 mg orally.
Any over the counter shake can help with extra calories.

My doctor is recommending upping my dose to 15mg and using voltaren gel but wants to see me in person before giving a referral to physical therapy which makes sense but I won’t be able to get an appointment for about 2 months.

 

[my little penguin]

Ask your Rheumo about split dosing
Where you take half the dose then 12 hours later you take the other half .
Depending on your dose the doc may change dosing for split dosing.
Sometimes it helps with side effects and sometimes it increases the effectiveness
Depends every one is different.
Definitely get the advise of your rheumatologist before you do anything different since how you take meds is also an important factor .

Volteran gel can help so that’s good
Pt referral your doc needs to really see you in person to tell what limitations should be placed
Ask to be placed on the wait list /cancellation list in case something opens up sooner .

 

[cheka]

My doctor is recommending upping my dose to 15mg and using voltaren gel but wants to see me in person before giving a referral to physical therapy which makes sense but I won’t be able to get an appointment for about 2 months.

in my case physical therapy didnt help inflammatory arthritis. it made it worse, if anything. it's not a physical problem. it's a gut microbiome problem

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0989-3

 

[Jo-mom]

@cheka - can you please please post your articles and research in the section that we have for such information. We understand how passionate you are about your message about the gut biome, but you are crowding each forum wih research and articles. Members are seeking personal experiences and advice from other members. Most of us have done research and are aware that there is a connection to the gut and enteropathic arthritis. In fact, "Enteropathy" refers to any pathology of the intestine. So if you can, please post articles and research under those forums.

 

[Bespectacledberries]

can you please refrain from criticizing information that i'm providing to a suffering member? i dont whine about your posts.

this member is suffering with inflammatory arthritis, I HAD THIS AND BEAT IT AFTER THOUSANDS OF HOURS OF RESEARCH. good luck finding a better qualified person on this board to help him make it go away, forever

too, the drug experts on here may help him with symptoms - but that is a losing game in the long term. see looooong list of devastating side effects of those drugs. still, they can tamp down the inflammation - giving time to work on fixing the gut, instead of fighting symptoms

recommend the op go watch the videos in the 'videos' thread in our research section. it will give him a crash course on how/why it's happening to him -- and how to make it disappear. the op poster is lucky to be fighting it now -- so much new info is out there to learn it quickly. it took me forever to piece it all together. now it's served up on a silver platter.

bespect - videos here, start with the cardiologist and the microbiologist (bottom two vids): https://crohnsforum.com/threads/videos.87496/

Hi! First I just want to note I am female (not that it’s super important) also I’ve done a lot of research since my diagnosis and understand what you’re saying. At the moment I have made all the dietary changes I can make within my financial and personal means, I also take supplements recommended by my dietitian and will see her again to reassess in a few months considering I became malnourished leading up to my diagnosis. My rheumatologist and GI are in close contact with each other and my dietitian so we are taking a multidisciplinary approach. I’m not currently looking to get off my medication nor is that a long term goal of mine as of right now. I am aware of the side effects but my GI thinks I’m doing well and I am being closely monitored. While I understand I am lucky to be diagnosed now as opposed to even 5 or 10 years ago considering new research and treatments are always coming out, I don’t feel very lucky. My whole life has been turned upside down, I had to take a break from school and cancel many plans. Not to mention all the life style changes I’ve made to better accommodate my illness. I was perfectly healthy less than 6 months ago and now I struggle to get out of bed some days. So while I definitely appreciate all the research and have taken a look at all of it I’m currently looking for more practical daily tips or suggestions to ask my doctors about as well as other people’s experiences. Its been very lonely as not a lot of people in my life understand what this is like and I’m constantly being judged for how I handle my illness. Thank you for taking the time to respond and help me out!

 

[Bespectacledberries]

If you have any specific recommendations for products, exercises, etc. feel free to share those I would love to take a look or if there is something you think I should talk to or ask my doctor about I would be interested in hearing that. I’m looking for many perspectives and experiences, just keep in mind if you can that I am young and don’t have access to certain things nor do I have a bunch of money to spend. I’m also hoping to avoid going more restrictive with my diet if I can, its already been really hard and I often feel really excluded when my friends and family go out to eat. Of course I’m willing to do what I need to in order to be healthy but the mental toll can be difficult too. I’m already experiencing a lot of fear when trying foods I haven’t had since my diagnosis and I don’t want to worsen my relationship with food.

 

[Opieshuffle13]

Hey Bespectacled,
You asked earlier about acupuncture. I have done it several times, albeit not for my Crohn's. I used it for debilitating neck and muscle issues. It worked for me. Amazingly well. But I'm not going to lie... there is a very real "leap of faith" aspect to it. If you try it for joint pain etc, go in with the right attitude and open mind. Take some ear buds and music... breathe and relax. Also... do your research for the right person in your area.

I wish you best of luck and success.

 

[my little penguin]

I can tell you my kiddo is about your age (20) and currently in college has juvenile arthritis/crohns and Sweets syndrome.
Finding the right meds is key to getting back to your normal
Weight wise
He drinks two carnation instant breakfast shakes plus food a day this helps him stay a healthy weight
Still goes out with friends /eats out some
So you can get there
I will ask him about exercises he did when his knee was inflamed
I know know he uses a balance board (similar to a snowboard ) that has a bar thing under it to strength his ankles more
But toe raises on the step
Window washer (side to side ) for ankles and abc writing each letter with your ankle can be range of motion exercises

 

[cheka]

Hi! First I just want to note I am female (not that it’s super important) also I’ve done a lot of research since my diagnosis and understand what you’re saying. At the moment I have made all the dietary changes I can make within my financial and personal means, I also take supplements recommended by my dietitian and will see her again to reassess in a few months considering I became malnourished leading up to my diagnosis. My rheumatologist and GI are in close contact with each other and my dietitian so we are taking a multidisciplinary approach. I’m not currently looking to get off my medication nor is that a long term goal of mine as of right now. I am aware of the side effects but my GI thinks I’m doing well and I am being closely monitored. While I understand I am lucky to be diagnosed now as opposed to even 5 or 10 years ago considering new research and treatments are always coming out, I don’t feel very lucky. My whole life has been turned upside down, I had to take a break from school and cancel many plans. Not to mention all the life style changes I’ve made to better accommodate my illness. I was perfectly healthy less than 6 months ago and now I struggle to get out of bed some days. So while I definitely appreciate all the research and have taken a look at all of it I’m currently looking for more practical daily tips or suggestions to ask my doctors about as well as other people’s experiences. Its been very lonely as not a lot of people in my life understand what this is like and I’m constantly being judged for how I handle my illness. Thank you for taking the time to respond and help me out!

getting a lot of flack from the drug users/promoters on this board - complaining to admin, deleting my posts, etc.

pm me for specific recommendations. you can beat this, i promise

 

[my little penguin]

@cheka
This is a kid -young adult
Do not pm advice that is against what their doctor is recommending.
Yes at 19 they are an adult but still a kid navigating a difficult disease
They noted that they are already malnourished under the care of Gi /dietian .
Do not send more restrictive or supplemental medicine advice by pm .
They are under a doctors care and this needs to be respected .

 

[cheka]

i recommend she works with her doctor. which likely means educating her doctor.

we see what doctors know/do on this forum. drugs all day every day. drugs are a poor substitute for root cause reversal - but can be helpful/necessary as an adjunct treatment to reversing the root cause of ibd, dysbiosis

i thank God for prednisone - tamping down my inflammatory arthritis. i had resigned myself to being on it forever - if the gut health stuff didnt work. but it did.

liberty first -- people should/do have the right to choose what drugs/foods/supplements they put in their bodies. same liberty applies to their knowledge seeking -- and stifling information sharing is counterproductive and shortsighted

i pray that your son finds this information too. he's been suffering/on drugs way too long - suffering from a correctable dysbiotic microbiome. please consider prompting him to study up on it. the information is widely available now. this wasnt the case when i did my deep dive.

 

[my little penguin]

@cheka
No one stays on prednisone very long .
At least not with a good doctor
Maintenance meds are used instead .

My adult child is not suffering
He is thriving living a normal life in college enjoying things
So do not assume your method - not proven in case studies by the way is the only method .
Your method is experimental
It works for you and a handful of family friends
That is anecdotal findings .
Not for a set of parameters that when given at set proven amounts works
Just a patchwork of this bacteria helps out maybe .

do not imply that my adult child is suffering
Or imply you have a fix
You don’t know his complete medical history which I will not share here .
You are not a doctor or a scientist or researcher
Just someone pulling papers who found a few interesting finds on gut bacteria
But not a single study stating given control group x amount for x time cured y .
I know you feel strongly about your method
But kids and adult children need to stick with main stream meds and be protected from experimental science until proven by scientists /doctors

 

[Jo-mom]

You are on the verge of "bullying". You say that we all have a choice but it appears that you believe only in your way of doing things. I am totally knowledgable on alternative medicine and means, but that did not work for my son. He is thriving on medication. Please be more respectful with your posts. Don't make assumptions that we are all drug pushers and will all suffer because of side effects. We are not telling you to change your ways and try a biologic, but you keep pushing your ways on us. Great that it worked for you, although you never did confirm that you have IBD.

 

[Bespectacledberries]

Hi, I’m 19 and was diagnosed with ulcerative colitis in January during a 10 day hospital stay for diarrhea, nausea, vomiting, and severe abdominal pain. Originally they put me on mesalamine both orally and rectally (in addition to prednisone) and while my symptoms did improve I never stop seeing blood in my stool and after getting home from the hospital I noticed joint pain in my hips first but then in my knees and ankles. After I started having debilitating flairs of joint pain especially at night and in the morning I saw a rheumatologist who told me I probably have enteropathic arthritis and that at my next GI appointment we could discuss switching my meds to something that would help the joint pain more. I’m now on inflectra and methotrexate, and while my digestive symptoms are much better, my joint pain doesn’t seem to be improving. Does anyone have any tips for helping with joint pain? My doctor told me to stay away from NSAIDs and Tylenol doesn’t seem to help.

Hi, just a quick update before look for advice, my joint pain started doing a lot better after my last infusion and I was feeling pretty good! Unfortunately I started feeling pretty bad about 2 weeks ago (6 weeks after my last infusion) and noticed blood in my stool. I got a stool test done and my calprotectin levels were high and my GI thinks my infliximab levels must be low. He put me on a short course of prednisone but I am honestly still not feeling great though I am getting my infusion today! Through all of this my nausea has been worse than ever, my GI and rheumatologist proscribed zofran to help with the nausea I get from taking methotrexate. I try not to take it too much especially after I learned it can cause constipation but I have still been experiencing it anyway. I was wondering what other people’s experience was with using zofran and constipation. I want to try and keep my colon as health as possible and being constipated is obviously uncomfortable but I can’t stand the feeling of being nauseous all day. It’s especially bad now that I’m hungry all the time from prednisone but I feel like I can’t eat.

 

[my little penguin]

Prednisone does make you hungry
Sometimes Pepcid /priolosec etc…can help with nausea ask your Gi
Pred makes nausea a lot worse

Folic acid daily can help with mtx
My kiddo takes 1 mg of folic acid twice a day to help with side effects

Ask your rheumatologist about split dosing
Methotrexate (Lots of rules with that ..your doc can explain. )

 

[Bespectacledberries]

Prednisone does make you hungry
Sometimes Pepcid /priolosec etc…can help with nausea ask your Gi
Pred makes nausea a lot worse

Folic acid daily can help with mtx
My kiddo takes 1 mg of folic acid twice a day to help with side effects

Ask your rheumatologist about split dosing
Methotrexate (Lots of rules with that ..your doc can explain. )

My rheumatologist thinks I should continue my weekly dose as I am apparently tolerating it well. I was prescribed priolosec out of the hospital but didn’t take it beyond the first week as I wasn’t sure it was needed and was worried about long term side effects though I have recently been experiencing a lot of nausea after I eat, would it help with that? If so maybe I will take it again. I do take folic acid though only in the morning so I will look into a twice daily system. Has your kiddo ever taken zofran long term if so what was that like for them? My GI prescribed it but I’m worried it’s not good for my gut health as it might be what’s causing my constipation

 

[my little penguin]

Weekly dose is normal for mtx
Split dosing is still a weekly dose
Ask your rheumatologist it is just taken in 24 hours and increases the ability to absorb the med and reduces nausea

priolosec can help with nausea
My kiddo takes Pepcid daily to help with that
Especially in college .

He also takes zofran as needed but it does give him constipation so he uses it sparingly.
He takes miralax daily for constipation and has for 13 years (it is part of his crohns )
He was dx at 7
Definitely ask your Gi about using miralax if you need it

 

[my little penguin]

@Bespectacledberries
Things improving ???

 

[Bespectacledberries]

Sort of, my methotrexate was upped to 20 mg and I am now split dosing which went okay. I’ve also started taking my omeprazole daily which has helped some with the nausea. It seems like the zofran wasn’t the cause of constipation as I stopped taking it but am still struggling with constipation. My GI just game me a new poop regimen to follow including Metamucil and miralax each morning but I can’t start that till I get home from vacation so we’ll see. As far as my generally quality of life, honestly I feel not horrible but not great and my bowel movements are often very painful. My mom is telling me I should see a therapist so I can talk to someone about how hard it is to be uncomfortable all day and deal with chronic pain but I’m not sure.

 

[Bespectacledberries]

Sort of, my methotrexate was upped to 20 mg and I am now split dosing which went okay. I’ve also started taking my omeprazole daily which has helped some with the nausea. It seems like the zofran wasn’t the cause of constipation as I stopped taking it but am still struggling with constipation. My GI just game me a new poop regimen to follow including Metamucil and miralax each morning but I can’t start that till I get home from vacation so we’ll see. As far as my generally quality of life, honestly I feel not horrible but not great and my bowel movements are often very painful. My mom is telling me I should see a therapist so I can talk to someone about how hard it is to be uncomfortable all day and deal with chronic pain but I’m not sure.

I’m also starting a new job soon, it’s not too many hours or strenuous work, but I will be working more than before, and I’m starting back at school in the fall. I’m a little worried I won’t be able to handle it all but I’m pretty happy to be getting back to things. (A little life update if you were curious, I know I mentioned I had to drop my classes last semester)

 

[Bespectacledberries]

@Bespectacledberries
Things improving ???

Somewhat… sorry I thought my other post was a reply oops

 

[my little penguin]

So few things
My kiddo is a year older than you but was dx at age 7 - he doesn’t remember ever not having crohns /arthritis
There are summer camps -camp oasis for crohns , camp JRA
There are local chapters for Juvenile arthritis as well as ccfa (crohns and colitis foundation )
Getting involved and going to meetings events helps
(My kiddo has done a few when he was first dx not now though )
Therapy can help as well -ask for medical coping therapist -someone to vent to other than your parents sometimes helps
They can provide support and tricks to deal with things /pain
Strongly suggest PT from your rheumatologist
That helps with pain
Rheumatology should have tricks to deal with pain sleeping /waking
Sign up with the office of disabilities at your college
Your rheumatologist/GI can fill out the forms
This gives you extensions for assignments if you flare
Things like priority scheduling (you get to pick your classes first so if mornings are tough easier to pick later ones )
Extra time on exams -typically in an exam center at the office of disabilities so you can rest your hands if they are cramping or if you need to use the restroom.
Remember it’s not a race so if you need to work less or take less classes until your stable that’s ok
We always tell my kiddo to listen to his body .

it may take a bit but you will get to a routine
Mine is a swim instructor as a summer job
So he gets to teach kids but more importantly he is in the pool which is easier on his joints versus standing for a fast food job
You got this
Keeping talking to your parents
And join some of the in person support groups
Meeting others with your disease does help

 

[Bespectacledberries]

So few things
My kiddo is a year older than you but was dx at age 7 - he doesn’t remember ever not having crohns /arthritis
There are summer camps -camp oasis for crohns , camp JRA
There are local chapters for Juvenile arthritis as well as ccfa (crohns and colitis foundation )
Getting involved and going to meetings events helps
(My kiddo has done a few when he was first dx not now though )
Therapy can help as well -ask for medical coping therapist -someone to vent to other than your parents sometimes helps
They can provide support and tricks to deal with things /pain
Strongly suggest PT from your rheumatologist
That helps with pain
Rheumatology should have tricks to deal with pain sleeping /waking
Sign up with the office of disabilities at your college
Your rheumatologist/GI can fill out the forms
This gives you extensions for assignments if you flare
Things like priority scheduling (you get to pick your classes first so if mornings are tough easier to pick later ones )
Extra time on exams -typically in an exam center at the office of disabilities so you can rest your hands if they are cramping or if you need to use the restroom.
Remember it’s not a race so if you need to work less or take less classes until your stable that’s ok
We always tell my kiddo to listen to his body .

it may take a bit but you will get to a routine
Mine is a swim instructor as a summer job
So he gets to teach kids but more importantly he is in the pool which is easier on his joints versus standing for a fast food job
You got this
Keeping talking to your parents
And join some of the in person support groups
Meeting others with your disease does help

I’m already have accommodations at school, I have autism so I’m registered with the disability services office, though they might be able to add additional accommodations now. I can talk to my counselor about it. I will definitely look into support groups and see if there is something in my area. I still haven’t been able to see my rheumatologist in person which is part of the delay on physical therapy I think but I am still checking cancelations and I have one scheduled in September I believe.

 

[my little penguin]

Most colleges have a pool on campus so that should help
https://www.crohnscolitisfoundation...ohns-and-colitis/school/school-accommodations
https://www.arthritis.org/juvenile-...ping-effective-plan/sample-504-accommodations

 

[my little penguin]

https://www.improvecarenow.org/tools_for_managing_ibd

 

[my little penguin]

Checking in @Bespectacledberries
Things going ok?
Getting ready to go to school
Remember student health and your docs can be reached by the patient portals if things get a little bumpy when school starts

 

[Bespectacledberries]

Checking in @Bespectacledberries
Things going ok?
Getting ready to go to school
Remember student health and your docs can be reached by the patient portals if things get a little bumpy when school starts

Things are okay I guess. I started methotrexate injections and while the side effects are the same it seems to be actual working to help my joints more than before. The poop regimen seems to be working as well though I had to start mixing my miralax with Gatorade powder because I can’t stand the after taste. I decided to delay going back to school one more semester because I have been dealing with mental health problems both related and unrelated to my UC, but I’m still working and that’s going pretty well. I got a referral for physical therapy and acupuncture and my first appointments are coming up as well as getting my colonoscopy scheduled for the end of September. This will be the first one I’m prepping for outside of the hospital so I’m a little nervous but I’m hoping it goes well. Overall I’m just feeling really overwhelmed, I have very little social life and I feel like I’m missing out on stuff. But ultimately I’m so tired and I end up using all my energy to do the stuff I need to do and I have nothing left to do the thing I want to. So I guess I’m still working on that. I don’t know, it’s difficult non of my friends really understand and that makes it hard. But at least health wise things are looking okay.

 

[my little penguin]

My kiddo mixes orange Gatorade with miralax every night .
He uses orange since it’s the only one he can’t use for scope prep .
He took an extra year of high school (online so he stretched it out ) this helped a lot for when he went to college
Sure a year later than his friends but ….
A year into college (he is a sophomore in this
He is much happier

You will get into a groove with friends once your back a school

his tips for scope prep
Calmoseptine-a bum barrier cream found behind the pharmacy counter
White /or yellow Gatorade plus miralax /ducolax prep (your Gi should have the instructions for you )
He suggests starting early 8-10 am the day before so your not up all night before the scope
Plenty of other liquids that are clear all day

good luck on the scope
Things do get better by a lot once your body gets into a calm state
Just takes time but you will get there

 

[Bespectacledberries]

My kiddo mixes orange Gatorade with miralax every night .
He uses orange since it’s the only one he can’t use for scope prep .
He took an extra year of high school (online so he stretched it out ) this helped a lot for when he went to college
Sure a year later than his friends but ….
A year into college (he is a sophomore in this
He is much happier

You will get into a groove with friends once your back a school

his tips for scope prep
Calmoseptine-a bum barrier cream found behind the pharmacy counter
White /or yellow Gatorade plus miralax /ducolax prep (your Gi should have the instructions for you )
He suggests starting early 8-10 am the day before so your not up all night before the scope
Plenty of other liquids that are clear all day

good luck on the scope
Things do get better by a lot once your body gets into a calm state
Just takes time but you will get there

I’ve had so many people tell me I should try a more restrictive diet to try and fix it. The research is often so contradictory though and I honestly can’t usually feel a difference based on what I eat. Has your kid tried a special diet? My GI hasn’t made any recommendations but I was told by a doctor in the hospital to consider going vegetarian. Honestly food had been stressing me out. I’m just looking for an other perspective, would you say diet is significantly important and if it is is there any way to make it simpler?

 

[Jo-mom]

@Bespectacledberries - try not to stress out about food. My son who was 20 when we discovered he had Crohn's as well as arthritis does not restrict his diet. Although we already did not eat meat (we eat fish), overall, he eats pretty well everything except for popcorn, asparagus, celery (due to a narrowing that he has in the terminal ileum). It is always important to eat healthily (this applies to everyone) but try not to stress about it. Some people do have to be more restrictive but it doesn't apply to everyone.

 

[my little penguin]

Same kiddo was 7 at dx
They had use try gluten free , dairy free , fodmaps, ibd-aid, cced and exclusive enteral nutrition.
The only one that did anything was exclusive enteral nutrition (formula only ) he used that twice instead of steriods at 7 and 12
Otherwise he just avoids nuts/fish (he is allergic ) , popcorn , pork/red meat , raw carrots /lettuce since those don’t agree with him
He eats food from home at college mostly due to food allergies but does not avoid most meat
It works for him

we tried diets way back when since they didn’t know why he had extra symptoms
This was pre juvenile arthritis and pre sweets syndrome diagnosis
Those are treated now so no crazy diets

everyone always says so and so fixed their fill in the blank by just eating this
I would tell them and taught Ds as well
“Thanks for thinking of me ,,, it’s great that worked for them … I will follow the advice of my doctor for my medical condition..”
tends to get them to stop commenting

 

[Opieshuffle13]

Re: diet
Listen to your own body! I tried a few things (including SCD diet a few years ago). Half of what they recommended in that book didn't work for me. Nuts are bad for me, so nut flours etc caused major problems. Also... nightshades and me do NOT get along. So I limit the things I know trigger me. However, I also eat thing that don't work because some days some hot buttered popcorn is more therapeutic for my mental health than worrying about the next morning's "session". I did stop drinking milk and eating non-aged (less than 30 days) cheeses and noticed a difference. Again... pay attention to YOUR body and what it tells you!

 

[Bespectacledberries]

Re: diet
Listen to your own body! I tried a few things (including SCD diet a few years ago). Half of what they recommended in that book didn't work for me. Nuts are bad for me, so nut flours etc caused major problems. Also... nightshades and me do NOT get along. So I limit the things I know trigger me. However, I also eat thing that don't work because some days some hot buttered popcorn is more therapeutic for my mental health than worrying about the next morning's "session". I did stop drinking milk and eating non-aged (less than 30 days) cheeses and noticed a difference. Again... pay attention to YOUR body and what it tells you!

I’m off dairy and gluten mostly to get my mom off my back. She fell down a diet rabbit hole when I was diagnosed and is constantly asking me what I’ve eaten or if I think cutting something out could “fix” my problem. She’s not agains my meds or anything but if I ever complain or mention having stomach problems then she immediately brings it up. I do think maybe no dairy and no gluten has helped but honestly I can’t tell. How do you know if something “doesn’t agree with you” how do I know what food caused the problem.

 

[Bespectacledberries]

Same kiddo was 7 at dx
They had use try gluten free , dairy free , fodmaps, ibd-aid, cced and exclusive enteral nutrition.
The only one that did anything was exclusive enteral nutrition (formula only ) he used that twice instead of steriods at 7 and 12
Otherwise he just avoids nuts/fish (he is allergic ) , popcorn , pork/red meat , raw carrots /lettuce since those don’t agree with him
He eats food from home at college mostly due to food allergies but does not avoid most meat
It works for him

we tried diets way back when since they didn’t know why he had extra symptoms
This was pre juvenile arthritis and pre sweets syndrome diagnosis
Those are treated now so no crazy diets

everyone always says so and so fixed their fill in the blank by just eating this
I would tell them and taught Ds as well
“Thanks for thinking of me ,,, it’s great that worked for them … I will follow the advice of my doctor for my medical condition..”
tends to get them to stop commenting

Thanks for the advice! Honestly I’ve had so many people ask me if I’m going to try the carnivore diet or something like it and I never know what to say besides no and I can’t every seem to end the conversation.

 

[Opieshuffle13]

how do I know what food caused the problem.

Trial and error. Keep a food log. Honestly... when I simply started paying attention is when I discovered tomato skins (nightshades) were bad for me. It's going to happen slowly, but I find once you actively pay attention to what you had the day before it begins to shed light. It won't be beams of light bursting though the clouds "aha!" moments... just a "oooooohhhh... so THOSE are a problem". Be well!

 

[my little penguin]

To answer your question on not agreeing with you .
My kiddo some raw veggies (carrots lettuce etc)
They come out looking the same as they went in.
Other foods he gets bad abdominal pain ,cramping or diarrhea after eating (12 to 24 hours )

most find dairy /gluten bothers their Gi track when they are flaring but once your system is calmed down … then those foods are mostly ok

it’s very individualized
Keep a log /food diary
There are plenty of apps
Or plain notebook so you can figure out
What bothers your system when your flaring and what is ok other times
As well as what bothers you day to day
Track food
Abdominal pain /location
Number of bm
Bristol chart number
Any blood or mucus

this way you can show the doc /your parents etc
And learn what helps you

 

[Bespectacledberries]

To answer your question on not agreeing with you .
My kiddo some raw veggies (carrots lettuce etc)
They come out looking the same as they went in.
Other foods he gets bad abdominal pain ,cramping or diarrhea after eating (12 to 24 hours )

most find dairy /gluten bothers their Gi track when they are flaring but once your system is calmed down … then those foods are mostly ok

it’s very individualized
Keep a log /food diary
There are plenty of apps
Or plain notebook so you can figure out
What bothers your system when your flaring and what is ok other times
As well as what bothers you day to day
Track food
Abdominal pain /location
Number of bm
Bristol chart number
Any blood or mucus

this way you can show the doc /your parents etc
And learn what helps you

Thanks! I’ve started keeping a food log again and have been able to mitigate some of the cramping and abdominal symptoms though the nausea is still present and I do occasionally vomit after eating though having small meals does help that. Mostly I’m writing because I just had my colonoscopy and it looks like my colon is in remission!!! But I still have pretty bad inflammation of my rectum and I am being put back on mesalamine enemas. I was on them before and was told I could stop but I guess I need them again. My doctor told me I need to do them every day for 4 weeks and the 2-3 times a week but didn’t mention if I would ever get to stop them again. Does anyone have experience with this? Also the methotrexate injections definitely work better but I still really struggle with pain in the mornings and then pain and a lot of soreness at nights so I am scheduling a new appointment with my doctor to try and get physical therapy or something. It’s just so frustrating when I want to do something on the weekend like go to the mall but I pretty much can’t walk more than 15 feet. I know things take time and sometime you have to put health first but it’s been 8 months and I am starting to become very frustrated with having to turn plans down or cancel stuff last minute.

 

[LouiseT]

O have enteropathic arthritis. R A with crohns symptoms. Humira injections bi monthly are helping my mobility.

 

[Bespectacledberries]

O have enteropathic arthritis. R A with crohns symptoms. Humira injections bi monthly are helping my mobility.

Are you on anything else? I get inflectra infusions so I don’t think I could be on humira. But I’m not sure how it works… I also do injections of methotrexate, I don’t know if you’ve been on the before, if you have did it not work for you? How long have you been on humira?

 

[LouiseT]

Methotrexate and Rheumalef made me worse. Much worse. Been on Humira for one month , 2 injections only and definitely less joint pain and fewer Crohns symptoms.

 

[my little penguin]

Humira and remicade are the same pathway for the immune system -same drug
Both are used for crohns and arthritis.
So you can not take both medicines at the same time .
Some prefer shots and other prefer infusions .

 

[Constipatedguy13]

Thanks! I’ve started keeping a food log again and have been able to mitigate some of the cramping and abdominal symptoms though the nausea is still present and I do occasionally vomit after eating though having small meals does help that. Mostly I’m writing because I just had my colonoscopy and it looks like my colon is in remission!!! But I still have pretty bad inflammation of my rectum and I am being put back on mesalamine enemas. I was on them before and was told I could stop but I guess I need them again. My doctor told me I need to do them every day for 4 weeks and the 2-3 times a week but didn’t mention if I would ever get to stop them again. Does anyone have experience with this? Also the methotrexate injections definitely work better but I still really struggle with pain in the mornings and then pain and a lot of soreness at nights so I am scheduling a new appointment with my doctor to try and get physical therapy or something. It’s just so frustrating when I want to do something on the weekend like go to the mall but I pretty much can’t walk more than 15 feet. I know things take time and sometime you have to put health first but it’s been 8 months and I am starting to become very frustrated with having to turn plans down or cancel stuff last minute.

I am on mesalamine enemas too,I hate them,and the irritation

 

[Bespectacledberries]

I am on mesalamine enemas too,I hate them,and the irritation

Yes!! I am seriously hoping to get off of them at some point. How long have you been on them? I was told I wouldn’t have to be on them once I started my biologic but shortly after they told me I needed to be on them again. Even when the inflammation in my colon improves nothing seems to be able to help the rectal inflammation… is this your experience?