new

[stepinwolf]

I just found out I have Crohns, I have been hurting for a long time. The drugs to help this seem to have the same side effects I am having now and they side effects overall are really more than I want to go chance. Some of the drugs seem way worse than the problem. Is there any other way to do this that does not include drugs. I have been considering just trying to live with it. I am not sure I can as bad as this is.
SW

 

[my little penguin]

So the drugs list possible side effects
All drugs have possible side effects

un controlled crohns Can cause strictures obstructions fistulas and inflammatory cellular changes

My kiddo was dx at age 7
He is now almost 17
So I understand your concern

crohns is tricky
Your doc may offer drug xyz
You might think drug abc is “safer “ or better
But in the end the only drug that matters is the drug your body responds to and stops the inflammation cycle

In kids they use exclusive enteral nutrition -EEN
(Formula only no solid foods )
This is done for 6-9 weeks
Then they are in a maintenance drug
Or some continue with formula at 80-90% and solid food at 10-20-%
It works for some kids

others have used the crohns exclusive diet (formula plus a very restrictive diet ) -has worked for a handful of cases not many

my kiddo has done een and tried a lot of different drugs over the years

he used currently on Stelara/methotrexate combination which is working well

Good luck

IBD Diagnostics & Treatment | IBD Clinic

 

[Amandakmk]

I feel you on the drugs and side affects , I was scared to start Humira although the prednisone made me feel so much better but the side affects were awful! Humira I have seen little to no change, I had and obstruction and went septic but am currently looking for more natural ways to control this . I am still taking the Humira until I talk with dr after my colonoscopy tomorrow and have hopes that there has been change and the inflammation has gone down . ( I have had more flares since starting the meds) also I have this horrible rash on my hands and feet and they did a biopsy to find out on that. They did put me on vitamin d and folic acid which gave me energy and I wasn’t drained all the time so that was some relief but I still have joint pain bad , my dr wanted to add another med but risk are too much for me

 

[stepinwolf]

I feel you on the drugs and side affects , I was scared to start Humira although the prednisone made me feel so much better but the side affects were awful! Humira I have seen little to no change, I had and obstruction and went septic but am currently looking for more natural ways to control this . I am still taking the Humira until I talk with dr after my colonoscopy tomorrow and have hopes that there has been change and the inflammation has gone down . ( I have had more flares since starting the meds) also I have this horrible rash on my hands and feet and they did a biopsy to find out on that. They did put me on vitamin d and folic acid which gave me energy and I wasn’t drained all the time so that was some relief but I still have joint pain bad , my dr wanted to add another med but risk are too much for me

I have researched this alot and these drugs are really ruff. Most of the people I have talked to say they have side effects that are just as bad as the issues they were having with crohns. It is hard for me to believe there is no way to control this without dugs. Most of the stuff that says you can comes from Europe. The doctor says not possible, I just do not believe them. I had an MRI that showed this disease and even with that they still want colonoscopy and some other test, why I do not know. I asked them why they said to verify but conceded that it does show on a MRI which it does. I have a hard time believing doctors where I live. To many people I know die here from cancer, I think we are 5th in the nation. Constant steriods and drugs. They love to tell you they are conservative. I really hope that you are better and if I find something that works I will post it to you. This stuff is like a beagle after a biscuit, it just wont quit.

 

[Amandakmk]

I went to have yet another colonoscopy last week , my crohns has not improved in fact maybe worse and I have to have another MRI! This skin rash with the blisters on my hands and feet is eczema, I can never get rid of it and only put steroid cream on it the dermatologist told me there was nothing he could do! This is painful, and my joints still kill me. My gastro dr told me he may refer me to more doctors for my case since I’m having worse side affects from the meds. I’m at a loss.

 

[my little penguin]

@Amandakmk
Have you seen a rheumatologist for your joints ???
Ds take methotrexate and Stelara for crohns /Arthritis abd skin issues
Stelara is approved for psoriasis

hope you find a med that helps

 

[Guerrero]

The only drug with worst side effect than the disease itself could be steroids in the long term at high dose, otherwise I disagree with you... i had very few side effects with azathioprin and biologics, and they were much much better than the disease uncontrolled

 

[Amandakmk]

@Amandakmk
Have you seen a rheumatologist for your joints ???
Ds take methotrexate and Stelara for crohns /Arthritis abd skin issues
Stelara is approved for psoriasis

hope you find a med that helps

Yes I have seen one and she wanted to start methotrexate but I’m so scared to take too. But my joints kill me and now this exzema stuff .

 

[Amandakmk]

@Amandakmk
Have you seen a rheumatologist for your joints ???
Ds take methotrexate and Stelara for crohns /Arthritis abd skin issues
Stelara is approved for psoriasis

hope you find a med that helps

I forgot to say they did mention we might possibly try stelara , but I go back to see my dr on the 22nd and I hope and pray for good news , and thank you so much for all the good Info , it is very much appreciated

 

[stepinwolf]

This is why I have to try and find another way to do this. I hope they find you something and I am really sorry to hear your doctor visit did not go well. I checked out stelara my self and still did not like the side effects. Good luck on your mri.

 

[my little penguin]

@stepinwolf
The list on Stelara or any drug is “potential” side effects
Not side effects that everyone has


Ds has been on Stelara for almost three years
No side effects at all
Only no inflammation in his gut or joints as a result

folks don’t use drugs because they aren’t willing to try “food “ diets or other methods
Most good diets do not work alone
They are great adjunct therapy to meds

They use drugs because the drugs stop the inflammation cycle which prevents cancers and loss of intestine due to surgery (rate is 75% of kids will need surgery within 5 years of dx -biologics lower that risk )

 

[my little penguin]

@Amandakmk
Methotrexate used for arthritis has a great safety record
They use it in tiny kiddos age 2 and up
The dose used for juvenile arthritis and adult arthritis is much much lower than what is given for chemotherapy
Chemotherapy does have scary side effects that are given - due to the large dose
Ds has been on mtx for about 7 years
No issues

 

[Amandakmk]

That is a relief to hear ! I do want my joints to ease but I am so scared of these medications

 

[my little penguin]

Please remember when inflammation is involved
Stopping the inflammation is key before damage is done
Damage is permanent
Inflammation is not
For joints -damage can be bone on bone -no cartilage left /deformity /scaring of tendons

even with meds Ds has scaring in his tendons in every finger -this has lead to shortening of the tendons so stretching out your hand/fingers completely flat is difficult for him
Thankfully we now have a med combo that stopped the inflammation cycle for arthritis as well as crohns

 

[Jo-mom]

Without Remicade, my son's arthritis would be getting worse - he already had arthritis in both hips and his SI joint has slight erosion. Without the meds, this would get worse. The meds are really important. I would be more afraid of what damage the constant inflammation is doing more than the possible side effects of the drug. I was afraid at first too, but knew the importance of stopping the inflammation. These drugs weren't available years ago and thankfully they are now. They only used steroids mostly in the old days which are much more harmful. Good luck.