What medication for Crohns. Please answer asap

amother

Bluebell ↓

Wed, Feb 21 2024, 9:37 am

My duaghter diagnosed at age 6.
(Her pediatrician sighed and said "another one." She said theres a big increase in kids with crohns, and many families in my community have someone with it)

Started on azathioprine daily but it gave her pancreatitis
Then humira injections (its a biologic drug, like remicade) but she kept meeding higher dose and was harder to tweak
Then remicade and has been on it for years BH without any side effects bli ayin hara.

If you have the energy for it, SCD diet for crohns has helped many but it is quite hard and needs to be followed very strictly, for sure in the beginning. Its not a quack diet, was made by a biochemist along with a medical doctor and has been around for years. There are facebook groups for it with thousands and thousands of followers and success stories-having said that, it works for many but not for everyone and its only in revent years that GIs started getting on board with it, and many still wont consider it (and a few do encourage it).

I will also tell you OP, that when my daughter was diagnosed I was completely overwhelmed. I thought it was the worst. BH BH BH (and she had a very severe case) life has gone back to completely normal, besides her needing the medication. I wish I cohld go back to myself and tell me to relax, not stress cuz it will turn out ok.

Please realize also that a lot of the terrible hype about crohns comes from older people who were diagnosed a few generations back. There is SO MUCH new information on it, and the younger generation overall is having a different experience than people who are in their 30s and 40s now. Yes, some have more complications, but its a smaller percentage. In the world of Crohns, living with it and treating it today is a world apart from living with it and treating it 20-30 years ago, and many people who were diagnosed back then, went through treatments and medicines that didnt work well and allowed their colon to keep getting inflamed and inflamed and caused irreversible damage that even today they cant heal. There is a very good chance that with today's knowledge, treating a child will prevent serious long term inflammation from occuring, and they'll just have a different experience.

The diagnosis has the same name as it did 30 years ago, but its not the exact same disease because we know more now.

amother

↑ Begonia ↓

Wed, Feb 21 2024, 11:20 am

amother Bluebell wrote:

Can I ask you what were her symptoms?
Because my husband has crohns I’m always on alert. My daughter will often say ow, my stomach… I took her to a gi did some blood work and stool sample and was all good. She gaining and growing and her pain doesn’t last more than a minute and then I don’t hear about it. She usually calms down when I say take a drink or go to the bathroom.

What made u find ur daughters diagnosi?

amother

↑ Mint

Wed, Feb 21 2024, 11:24 am

amother Begonia wrote:

She might just be sensitive to certain foods. Keep a log of what shes eating and when her stomach hurts... It may be sugar, processed foods, milk, gluten... do trial and error and see what it can be

amother

↑ Bluebell ↓

Wed, Feb 21 2024, 11:28 am

amother Begonia wrote:

Before you read my reply realize that crohns presents itself in sooooo many many different ways with different people. So my daughter didnt have many symptoms that others do, and vice versa.

Either way she had no symptoms whatsoever besides bloody stool for a few weeks with no infection. Her bloodwork cam back normal, even all the inflammatory markers for crohns.
They said it was almost certainly benign polyps, not unheard of in kids.
During the procedure to remove the polyps, which is guided by camera just like a colonoscopy, they found no polyps and instead found her entire colon and also small intestine was completely ravaged with inflammation-and she never even had real stomach pain!
They told us it was crohns right then, and subsequent stool samples (which we had not do e before) did show elevated inflammatory markers for crohns.
She didnt have any other typical symptoms such as stomach pain, joint pain, slow growth etc

amother

↑ Lightcoral ↓

Wed, Feb 21 2024, 11:36 am

amother Begonia wrote:

For us it was ongoing loose stools at a higher frequency than normal. Some stomach pain but that wasn’t so significant. Doctor didn’t automatically assume Crohns but once the labs came back it was pretty clearly that and the colonoscopy confirmed it.

Librarian ↓

Wed, Feb 21 2024, 1:40 pm

amother Bluebell wrote:

This is very well said!
My son was diagnosed at 17 and after being monitored for 2 years was put on Humira. He self injects every other week and has achieved and maintained remission. He preferred Humira to Remicaide because he can do it himself. I was distraught and devastated when he was diagnosed so I understand how you feel. Please take chizuk from me! My son is happy and healthy, married with a baby BH. He had no problem with shidduchim which was a big fear of mine. There is a light at the end of the tunnel iyH!

amother

Tan ↓

Wed, Feb 21 2024, 3:25 pm

B''h no experience with chrons, but other chronic conditions.
Just a few words...

People will recommend every weird thing, and tell you the weirdest things their cousin's sisters brother-in-law tried. People will tell you it's childhood trauma, people will advise you to try a trillion herbal vitamins.... You need a strong backbone and know they mean good, but you don't need to believe everything:)

Find a doc you really trust. You could go more natural once the disease is under control, if you choose and she is ready. For goodness sake first get her to baseline. Personally would not force a child on a difficult to follow a quack diet. Will leave her with more emotional damage then any physical side affects from medication.

Don't know how old she is, but if she is in her teenage years, Have her join Myteam. It's an amazing organization that supports girls with chronic conditions. They can pair her with a mentor with a similar condition, a teammate for peer support, there are events, care packages, chizuk emails. This is all done in a fun teenage friendly way.

Wishing you much strength along the journey!

https://myteamsupports.org/

amother

Skyblue ↓

Wed, Feb 21 2024, 3:46 pm

For those who say it's not possible. I was diagnosed with crohn's and healed completely doing energy work as well as inner work. (This was after trying medicine, diets, supplements etc.) I had some space to experiment as it was not getting worse so I stayed under the care of my doctor while testing every other week to make sure I was stable and then experimented. I have helped others heal the same way that I was and people have seen results as well. If you have time to experiment, and stay safely under the care of a doctor it is so worth the results of being totally free of ANYTHING. No diets, medications or anything.

amother

↑ Bluebell

Wed, Feb 21 2024, 3:47 pm

amother Tan wrote:

Don't know how old she is, but if she is in her teenage years, Have her join Myteam. It's an amazing organization that supports girls with chronic conditions. They can pair her with a mentor with a similar condition, a teammate for peer support, there are events, care packages, chizuk emails. This is all done in a fun teenage friendly way.

Wishing you much strength along the journey!

https://myteamsupports.org/

I just wanted to comment on this.
Because crohns is such a diverse disease and affects people so differently, I might suggest waiting to see how your daughter responds to treatment before doing this.
My reasoning is, BH because of all the new research and meds, many kids truly do not feel as though they have a chronic illness, and having them associate with an organization devoted to kids who are chronically ill, might make them feel worse off than without it. Of course if she is having a hard time, and does feel like a chronically ill child, definitely go for it, its amazing that this organization exists!!

Im saying this because of one experience with my daughter-she was around 11 years old, by a well visit with her pediatrician, and the doctor very well-meaningly asked if she might want to get connected with a certain organization for children with chronic medical issues.
After the visit, my daughter turned to me, horrified. "Ma, why?? Why would I need to?? Im not sick! Is there something wrong with me? All I do is take medicine! Im not sick BH!" She was really quite upset, because she had never thought of herself as anything more than a kid who takes medicine. And she did not want to think of herself as ill

↑ Librarian ↓

Wed, Feb 21 2024, 4:17 pm

amother Bluebell wrote:

Yes so true! When my son turned 21 he switched from his pediatrician to a regular GP who did not know him. At his first annual checkup the GP took 9 vials of blood to test him for all kinds of deficiencies since he saw on his chart that he had Crohn's. My son was beside himself. He was furious. I had to email the doctor and explain that my son is under very good care with his gastroenterologist and he has never had an abnormal blood test, not ever. It was the first (and only BH) time my son was made to feel "sick" and he was very upset. No one except his parents and now his wife and her parents even know he has any health issue at all. He does Not consider himself ill at all.
And by the way, this is a perfect example of how everyone's Crohn's is different. My son never had low iron, no vitamin deficiencies and no Crohn's markers.

amother

↑ Begonia ↓

Wed, Feb 21 2024, 4:25 pm

amother Skyblue wrote:

So now you eat regularly take no meds and ur colonoscopy and mri show absolutely no pathology of crohns? And original diagnosis was with evidence on mri or colonoscopy?

This is factually not possible. Sorry.

amother

↑ Skyblue ↓

Wed, Feb 21 2024, 4:34 pm

amother Begonia wrote:

I eat regularly take no meds. I have no symptoms of crohns anymore. I have not done a colonoscopy or mri under the guidance of my doctor until I have symptoms again. Maybe my case was different? Anything is possible. But this is what my situation was. I was showing up with inflammation in colonospy and they at first diagnosed as ibs and after mri switched diagnosis to crohns. it was not severe bh so maybe that's why they told me I don't need to retest if the inflammatory markers went down and no symptoms. I don't know. But this is what happened to me.

amother

↑ Begonia ↓

Wed, Feb 21 2024, 4:43 pm

amother Skyblue wrote:

So if u haven’t retested u cannot say u don’t have crohns. Crohns can be silent and asymptomatic for years. It doesn’t mean it’s not there or not progressing. My husband never had a single symptom and still doesn’t. Only by testing (because his mother died young from colon cancer ) did we find it.

I do want to add that emotional health is a big factor in crohns. Taking care of stressors can greatly avoid triggering the crohns. But if it’s there it’s there

amother

↑ Skyblue ↓

Wed, Feb 21 2024, 5:04 pm

amother Begonia wrote:

I hear you. You are making me want to undergo a test just for curiosity sake. lol. I think thought that it would be stupid to do that. But I am curious now because I was shocked that I totally cleared the way I did. I never believed it to be possible.

↑ Librarian

Wed, Feb 21 2024, 5:08 pm

amother Begonia wrote:

My son's Dr. told me that 20% of people with Crohn's do not get worse without medication and can stay pain and symptom free. We were hoping my son would be within that 20% but after two years of monitoring we saw that that the inflammation at his ileum was not resolving so he had to start meds. But this does exist. I don't think it has to do with Sarno or anything else. I do believe Sarno helps with pain and digestive symptoms if someone has those, but not with the actual inflammation.