PLEASE GUIDE

[DEBANJAN HAJRA]

I diagnosed with Crohn's in 2022 when I was 31 years old. First I took Mesalamine 2g for 02 years. Then I was not at all aware about the disease. My Symptoms were less and I stopped treatment. After 03 months I had a flare up which was unbearable. I backed to Doctor again and started Budesonide 9mg -- 03 months, 06mg -- next 02 months and 03mg --- next 02 months. Then at colonoscopy investigation the ulcer at ileum totally healed. Now I am at Azoran - 50mg. Though the ulcer healed Now I have the same unbearable symptoms like cramping, bloating, acidity, gas, burning sensation at epigastric region, burning sensation at head, headache, back, neck and shoulder pain.
I have Fistula also.
For Fistula My Doctor going to start Infliximab.
I don't know what to do as my Doctor cant assure how many doses to be taken.
I am not financially strong to bear the expense.
If Infliximab not work may I back to medicine ------ Please Suggest me. Now I am very helpless. Please Guide.

 

[my little penguin]

Depends on what country you are in ?
Infliximab needs to be taken as long as it works
Not a specific set of doses
In the us at least there are social workers from the hospital-Gi office
Talk to them
Be honest and they can help get the drug for little to no copay
The drug company can also help
Outside of the US I am not sure but others could jump in to try to tell you who to talk to

 

[mopoperator]

I diagnosed with Crohn's in 2022 when I was 31 years old. First I took Mesalamine 2g for 02 years. Then I was not at all aware about the disease. My Symptoms were less and I stopped treatment. After 03 months I had a flare up which was unbearable. I backed to Doctor again and started Budesonide 9mg -- 03 months, 06mg -- next 02 months and 03mg --- next 02 months. Then at colonoscopy investigation the ulcer at ileum totally healed. Now I am at Azoran - 50mg. Though the ulcer healed Now I have the same unbearable symptoms like cramping, bloating, acidity, gas, burning sensation at epigastric region, burning sensation at head, headache, back, neck and shoulder pain.
I have Fistula also.
For Fistula My Doctor going to start Infliximab.
I don't know what to do as my Doctor cant assure how many doses to be taken.
I am not financially strong to bear the expense.
If Infliximab not work may I back to medicine ------ Please Suggest me. Now I am very helpless. Please Guide.

Hi I think you are from India. Remicade is very expensive in India and you have to pay for it yourself unless there are schemes.

Have you tried scd diet it works for some people very well. Also helps with auto immune illness.

 

[Andersen007]

There are many other options other than infliximab, and even that one has many biosimilars that should be cheaper and have the same efficacy. Depending on your country there should be options to get support for at least some type of biologics or their respective biosimilars. If that is totally not an option, ileal Crohn's often tends to react well to dietary changes that at least should help with symptom management. SCD would be an option as mentioned above, but there are others like carnivore diet, CDED, etc. that sometimes worked for some. The best dietary intervention there is for ileal Crohn's is Exclusive Enteral Nutrition which can be done with many different type of formulas, depending on what's available in your country, as far as I know it also can help with fistulas. Ideally to be done under medical supervision but where I live you can just walk into a pharmacy and buy them too. Good luck!

 

[DEBANJAN HAJRA]

Depends on what country you are in ?
Infliximab needs to be taken as long as it works
Not a specific set of doses
In the us at least there are social workers from the hospital-Gi office
Talk to them
Be honest and they can help get the drug for little to no copay
The drug company can also help
Outside of the US I am not sure but others could jump in to try to tell you who to talk to

Can I get the contact details of Social Worker Team. So that I get the infliximab at my affordable packages.

 

[DEBANJAN HAJRA]

Hi I think you are from India. Remicade is very expensive in India and you have to pay for it yourself unless there are schemes.

Have you tried scd diet it works for some people very well. Also helps with auto immune illness.

Yes I am from India.
Here Infliximab is very expensive.
Out of reach for common people like us. If the treatment continues for long it is very difficult to bear the expense.
Please guide.

 

[DEBANJAN HAJRA]

Please

There are many other options other than infliximab, and even that one has many biosimilars that should be cheaper and have the same efficacy. Depending on your country there should be options to get support for at least some type of biologics or their respective biosimilars. If that is totally not an option, ileal Crohn's often tends to react well to dietary changes that at least should help with symptom management. SCD would be an option as mentioned above, but there are others like carnivore diet, CDED, etc. that sometimes worked for some. The best dietary intervention there is for ileal Crohn's is Exclusive Enteral Nutrition which can be done with many different type of formulas, depending on what's available in your country, as far as I know it also can help with fistulas. Ideally to be done under medical supervision but where I live you can just walk into a pharmacy and buy them too. Good luck!

I am from India.
Please aware me about the diet plan.
If I can't with infliximab the diet plan will be only option.

 

[mopoperator]

Yes I am from India.
Here Infliximab is very expensive.
Out of reach for common people like us. If the treatment continues for long it is very difficult to bear the expense.
Please guide.

This website is the one I used.

https://www.nomorecrohns.com/
Please read very carefully about the specific carbohydrate diet. Problem with us Indians is we eat too many grains like roti and rice all of which causes problems with Crohn's disease.

Try the intro diet and take it from there. Some people see improvements within 2 weeks just by staying on the intro diet longer.

There are vegetarian options also if you don't eat meat like some Indians.

 

[DEBANJAN HAJRA]

Many thanks.

 

[mopoperator]

Many thanks.

There are other routes apart from scd diet in case you want to try them.

Cded diet, plant based diet, een diet where you drink modulen exclusively no solid foods.

Een can bring most flare up under control. Ask your doctor about een. There might be pharmacy in India that stock these drinks or powders.

 

[DEBANJAN HAJRA]

Dear

There are other routes apart from scd diet in case you want to try them.

Cded diet, plant based diet, een diet where you drink modulen exclusively no solid foods.

Een can bring most flare up under control. Ask your doctor about een. There might be pharmacy in India that stock these drinks or powders.

Dear Madam,
I have gone through the scd diet but this kind of diet is just a luxury the level best.
But I can continue with home made yogurt.
Veg salads.
I can hardly digest meat, chicken etc.
Only fish is comfortable.

 

[DEBANJAN HAJRA]

There are other routes apart from scd diet in case you want to try them.

Cded diet, plant based diet, een diet where you drink modulen exclusively no solid foods.

Een can bring most flare up under control. Ask your doctor about een. There might be pharmacy in India that stock these drinks or powders.

OK madam.
Thanks.