Advice Please

[Timelordsboots]

Hello

I have had Crohn’s for a few years and I was wondering if anyone suffers from regular ear ache as well as mouth ulcers?

I have been having a problem with both for several years and the specialists have not come up with any advice to fix it.

I also drink a lot of Diet Coke. Since I got Crohn’s I find I am unable to eat during the day at work because it bloats me and makes me tired. Does anyone have any suggestions?

I currently have a mouth full of mouth ulcers which is frustrating. Does anyone have any suggestions how to reduce getting them?

Sorry for the number of questions but I am frustrated with the symptoms and for the first time I thought I would reach out to people who also suffer and see if anyone has any suggestions/advice.

Kind Regards Jon

 

[Delta_hippo]

Hello
Can’t help with a lot of your questions but it might be worth seriously weaning off the Diet Coke. I have a friend with UC who had to have everything chopped out, he used to drink DC loads, his GI told him if he had a dollar for every patient that drank it s lit then had messed up insides he could have retired years ago. I also used to drink it a lot but haven’t touched now in years.
Wonder if soups/ smoothies would help you get through the day without bloating? Maybe look at the IBD-AID diet pages for ideas
I got a few mouth ulcers before Crohn’s ambushed me so it might be an early warning sign all not well lower down, I don’t know, but worth keeping on top of your tests and seeing how things are.
Good luck.

 

[Timelordsboots]

Hello
Can’t help with a lot of your questions but it might be worth seriously weaning off the Diet Coke. I have a friend with UC who had to have everything chopped out, he used to drink DC loads, his GI told him if he had a dollar for every patient that drank it s lit then had messed up insides he could have retired years ago. I also used to drink it a lot but haven’t touched now in years.
Wonder if soups/ smoothies would help you get through the day without bloating? Maybe look at the IBD-AID diet pages for ideas
I got a few mouth ulcers before Crohn’s ambushed me so it might be an early warning sign all not well lower down, I don’t know, but worth keeping on top of your tests and seeing how things are.
Good luck.

Thank you that is a great help I will look into smoothies and check out the diet page

 

[Victorcdrm]

Hi, what do you mean by ear ache ? I luckily only had mouth ulcers once, didn't eat for a week and they left slowly after (drank salt and sugar water during that time, and mostly soup for the follwing days (during that time a doctor prescribed colchicine but didn't do anything except diarrhea) then I started the crohn's treatment. If you are overweight, not eating for a week could be feasible, don't know if its bad or not, personally lost 20 pounds doing that and haven't regained them (but was way to hard to eat, didn't really have a choice). I also know you have sprays that can numb your mouth and throat, but for me they didn't work (I'm in France, I think the one they have in France isn't as strong as the US one, so you could maybe give it a try as it could be more effective where you are)

 

[Timelordsboots]

Hi victorcdrm thanks for responding. I have strong ear pain that results in my ear canal closing up and I get prescribed steroid drops. Thanks for your advice I have tried the throat sprays also but they don’t seem to do anything for me either. Kind Regards Jon

 

[my little penguin]

What meds are you on for crohns ?
Have they biopsied any of the mouth ulcers ?
Crohns can cause mouth ulcers but other inflammatory conditions typically auto inflammatory can cause ear inflammation and mouth ulcers .
My kiddo has crohns , juvenile arthritis and an auto inflammatory condition-acute febrile neutrophilic dermatosis (aka Sweets syndrome ) - which causes mouth ulcers ,rashes and flu like symptoms including fevers .

Bechets mimics crohns causes mouth ulcers ,Gi issues ,and some ear issues

not saying you have either of those or anything but crohns -
But please see a rheumatologist who specifically treats auto inflammatory conditions

we assumed e every thing my kiddo had was crohns related
Only to find out later he actually had two other conditions

good luck

 

[westernbuddy]

I know Grommets can be used for ear ache but this is usually for kids.

Ulcers in mouth, crohns can get the mouth, try getting best nutrition, blend or juice drinks so they can be absorbed and clean teeth after each meal.

 

[Timelordsboots]

What meds are you on for crohns ?
Have they biopsied any of the mouth ulcers ?
Crohns can cause mouth ulcers but other inflammatory conditions typically auto inflammatory can cause ear inflammation and mouth ulcers .
My kiddo has crohns , juvenile arthritis and an auto inflammatory condition-acute febrile neutrophilic dermatosis (aka Sweets syndrome ) - which causes mouth ulcers ,rashes and flu like symptoms including fevers .

Bechets mimics crohns causes mouth ulcers ,Gi issues ,and some ear issues

not saying you have either of those or anything but crohns -
But please see a rheumatologist who specifically treats auto inflammatory conditions

we assumed e every thing my kiddo had was crohns related
Only to find out later he actually had two other conditions

good luck

Thank you mylittlepenguin that is a great help. All my best wishes to you and your kid. Kind Regards Jon

 

[Timelordsboots]

I know Grommets can be used for ear ache but this is usually for kids.

Ulcers in mouth, crohns can get the mouth, try getting best nutrition, blend or juice drinks so they can be absorbed and clean teeth after each meal.

Hi westernbuddy that is useful. Is it best to make your own or buy smoothies in the supermarkets? Kind Regards Jon

 

[westernbuddy]

Yes poor nutrition will cause ulcers in the mouth, and I suspect that's what it is your body calling for better nutrition.

But I'm no Doctor, poor nutrition can also raise the risk of infection, this may also cause ear ache.

It's not by any fault, crohns simply makes it hard to absorb nutrition from food.

I don't know what country your in, here In the uk we can purchase from a store or get prescribed from our doctor.

Elemental 028
Modulin ibd
Calshake

Rest of the world there is always something similar to purchase.

If your looking to make your own check out this book by Tracie Dalessandro also helps with nutrition in general.

Try and have 1 pint or 19 ounces of liquid nutrition per day as a minimum, you will notice results very fast in some way or another it will make you feel better ; )

 

[Timelordsboots]

Yes poor nutrition will cause ulcers in the mouth, and I suspect that's what it is your body calling for better nutrition.

But I'm no Doctor, poor nutrition can also raise the risk of infection, this may also cause ear ache.

It's not by any fault, crohns simply makes it hard to absorb nutrition from food.

I don't know what country your in, here In the uk we can purchase from a store or get prescribed from our doctor.

Elemental 028
Modulin ibd
Calshake

Rest of the world there is always something similar to purchase.

If your looking to make your own check out this book by Tracie Dalessandro also helps with nutrition in general.

Try and have 1 pint or 19 ounces of liquid nutrition per day as a minimum, you will notice results very fast in some way or another it will make you feel better ; )

Hi westernbuddy that is great thanks. I live in the UK and didn’t know about those. Can you purchase them from the local chemist then? Kind Regards Jon

 

[westernbuddy]

They are on ebay, are they in chemists yes and no.

Modulen ibd is the cheapest elemental 028 the most highest priced.

You should call up your local gp or the ibd nurses, ask if you can have a prescription for elemental 028 or mudulin ibd, tell them just 1-2 drinks a day, your finding it hard to get nutrition from food and want to see if that benefits you as your struggling.

 

[Timelordsboots]

They are on ebay, are they in chemists yes and no.

Modulin ibd is the cheapest elemental 028 the most highest priced.

You should call up your local gp or the ibd nurses, ask if you can have a prescription for elemental 028 or mudulin ibd, tell them just 1-2 drinks a day, your finding it hard to get nutrition from food and want to see if that benefits you as your struggling.

That is a great help thanks. I do have a lot of energy drop offs currently and struggle to get up in the mornings and feel tired a lot of the time so this might help.

Really appreciate your advice I will speak to my GP on Monday morning. Hopefully that will help me get back to the gym and have energy to do it.

 

[westernbuddy]

It can be a battle to keep getting them depending on the doctor. Some are generous and easy, some would rather use actual medicines as this is food in some senses.

But in Japan its the main thing they use.

I have been on it years, several times they have tried to take It of me.

I remember saying to the gi in the hospital one time please can I keep this I can't survive without it, it's like red bull to me.

So there you go yes, it gives energy.

Also it's proven that 6 weeks on this only no food can induce remission as good as any drug, and by using 25% a day can maintain remission.

 

[Timelordsboots]

It can be a battle to keep getting them depending on the doctor. Some are generous and easy, some would rather use actual medicines as this is food in some senses.

But in Japan its the main thing they use.

I have been on it years, several times they have tried to take It of me.

I remember saying to the gi in the hospital one time please can I keep this I can't survive without it, it's like red bull to me.

So there you go yes, it gives energy.

Also it's proven that 6 weeks on this only no food can induce remission as good as any drug, and by using 25% a day can maintain remission.

Do you just take this instead of food then or do you still eat and have this at points throughout the day to give you a boost on top of what you eat? Kind Regards Jon

 

[westernbuddy]

You can have this no food and live of it.

But I just have one at 9am each day I tend to only eat lunch about 3pm tea about 8pm so my body had plenty of hours without solid food, and the liquid in the morning easy to digest and absorb.



I take elemental 028 in orange have to chill it before drinking.

Modulen ibd you can add the nesquick powder to it.

You see I think crohns is about bacteria, so by letting bowles have plenty of time to digest food without putting more in gives more time for bacteria to pass through that inflmation will target.

Meds are being worked on to make bacteria move through intestines faster.

Suppressing the immune system I think is the wrong way around it, but it's all we have right now medicine wise.