Community Forum

Dear all,
My daughter has been diagnosed of Crohn's disease today. But She has not got bloody stools as is common in Crohn's disease. She has undergone a colonoscopy and endoscopy and there ARE ulcers in Jujenum and small bowel.
Since this disease is completely a new name for me, I want to get in touch with parents whose kids are affected with this disease and want to discuss regarding the medicines.
My daughter is suggested with Predinosole. Since this steroid has a lot of side effects, I want more information about this.
Please feel free to contact me.
and thanks in advance.
regards,
Uday.

Reply posted for sarahhite23.

My first Remicade infusion was the same day my daughters graduated high school and I was worried about nausea or tiredness but I had no ill effects or tiredness.  I spent a couple hours in a hot crowded gym and was fine.  

Reply posted for yub2204.

Intestinal tuberculosis cannot be ruled out if you are in a developing country.Check with doctor.

Reply posted for charbs.

Thank you very much for sharing.  I'm sorry to hear that it didn't work for you, though!  I spent an hour reading through posts yesterday and can't get over how different people's experience has been with different treatments.  Wow.  Thanks again for sharing.

Reply posted for sarahhite23.

I was on Remicade for two years and had no bad afffects.  Unfortunately, I had no good ones either.  I switched to entyvio, and am having an infusion today but it doesn’t seem to be working either.

Reply posted for yub2204.

My daughter (7) was just diagnosed with Crohn's last week as well.  Her bloodwork is pretty bad right now as a result of the disease, and Remicade has been recommended.  We're getting a second opinion on course of treatment this week before getting started with Remicade infusions.  My colleague's daughter (~21 years old) also has Crohn's and has had great success with Remicade after not-so-great success prior to that.  

Managing her disease through diet/no meds is not an option for us.  I would appreciate hearing if there are any cautions against Remicade.  The big deal risks/side effects have been explained to us, but anything that a DR might not find to be a big deal but is just a pain in the butt? (Will it make her tired, etc?)

Reply posted for yub2204.

How old is your daugher?

I would strongly advise against prednisone or any type of medication.

Diet and lifestyle changes can completely change and nearly eliminate the symptoms.

I have had Crohn's for 15 years and have never taken medication

Reply posted for yub2204.

I have had Chron's for 60 years (2 surgieries when I was 16 and one recently) and many times took prednisone to get the flare under control.  It was usually a course of 4-6 weeks and I did not suffer any side effects, either short or long term.

Good Luck!

Reply posted for kelliwithchrons.

so sorry! i just replied and I realize i said your son, while it is your daughter. I am sorry about that

Reply posted for yub2204.

Hey, I am a 17 year old with Chron's disease. I was diagnosed last November. I did have bloody stools, but not everyone gets all of the symptoms. I was put on prednisone from November 13th to around the middle of February. I honestly hated it because of many reasons. I could sit and eat a whole cake at once and I gained 13 pounds. My face was so swollen that I got bullied at school, and I also stayed so bloated that I looked pregnant. I would also get muscle spasms. Overall, it was just not a good experience for me. If i did not eat enough when I took it, I would throw up so make sure he always has a good meal around the time he takes his medicine. I was started on 40 mg a day until I was weaned off of it. I think I stayed on it longer than most people because my disease is severe and I am still not in remission. Was your son's diagnosis moderate or severe?

Reply posted for Ellen Catb.

I'm new to being a parent with a child diagnosed with Crohn's also. So I'm still learning alot everyday. My son was diagnosed in jan, he is 15 years old. They had him on Prednisone in the beginning, and slowly weaned him off of it completely now. He was only on Prednisone I think few months. It made him get puffy in the face, and eat alot, but he really needed to eat alot so that was a good thing. The puffyness now went away since off of it. Hes on a weekly injection of methotrexate. It seems to be working for him so far, but like I said we're still new to it all. He has been doing excellent, gained over 30 pounds which was severely needed. Has no bowl issues at all so far. Its all alot to take in and learn about, I learn something new everyday about it.

Reply posted for yub2204.

I'm so sorry to hear of your daughters diagnosis.  I was diagnosed when I was 14 in 1974.  I had my first serious bout at 18 and they perscribed predizone.  It is one serious steroid.  Yes, it fixed my flare up.  I also grew 2' inches and had excessive weight gain and hair growth, my voice changed and stopped my period.  Bottom line, it is a STRONG STEROID.  

It's just my opinion, but I would find another Doctor.  Possibly one who also practices Homeopathic with medication and nutrition.  Nutrition is vital with this disease (like most) and is also difficult to keep in our systems.  

In 2014, I went into AFIB because I had no nutrients in my system.  My heart rate went up to 200.   When diagnosed in the emergency room and several Cardiac tests, the diagnosis was that it was due to my Crohns Disease and that there is absolutely nothing wrong with my heart.  I had to take a whole new look at how to keep vitamins and nutrients in my system.  Yes, I've had the disease for a long time, but still had no idea that that could happen.  It makes sense though.  

I was perscribed Sulfasalazine in 1974 and still take it today along with a nutritional triangle.   I commend you to find out every thing you can about this disease.  Not everyone is the same in how it effects them or how they need to be treated.  

Please don't let any doctor just throw a pill at it. 

God's speed.