Crohns (or other lifelong disease) medication choices

amother

Red ↓

Fri, Dec 28 2018, 10:27 am

My 9 year old daughter has crohns and is on humira.
I have so many regrets. 1. She hates the shot and sobs. She begs to go on a diet instead 2. There are so many risks with it. 3. You can never stop.

On the other hand she was in so much pain before (bH the worst of the pain was short so it’s easy to forget now) And she hadn’t grown in a few years and bH this was caught before puberty. The humira is working amazing.

We also had tried a milder drug but she was severely allergic and ended up in the hospital for a few days

But I have so many fears that I’ve chosen a drug for her she can never stop. Let’s say at 15 she decided she wants to go on a specialized diet. She still can’t stop taking humira.

Anyone else making these decisions for their kids? Do you have a hard time accepting or coming to terms with it or making peace? How?

amother

Mauve ↓

Fri, Dec 28 2018, 10:31 am

amother wrote:

My daughter (8) has crohns. Humira actually didnt work for her so she stopped it, but I dont understand what youre saying. Why cant she stop taking the humira if she goes on the SCD diet? Thats kind of the point isnt it?

TranquilityAndPeace

Fri, Dec 28 2018, 11:04 am

I just want to send you tons of hugs.

There are some good Crohns groups on Facebook. If you friend me and message me, I can add you. I'm Chaya Braun on FB.

I was diagnosed when I was 26, so it's a completely didrent story, but I've been on diets and meds and B"H am living okay now without them. I found that neither helped me sufficiently to stick with them long term. Hugs and prayers for your daughter!!!!!!!

amother

↑ Red ↓

Fri, Dec 28 2018, 11:14 am

amother wrote:

I spoke to a dietician who specializes in crohns. She confirmed that she would never take someone off humira who is doing well. There is no way to know if the diet works for someone off the drug if they are on the drug. Once you are on you develop anti bodies and going off and then back on can be fatal. So if you go off to see if the diet works and it doesn’t then it is no longer an option.
Many people I speak to who are on the diet still have painful flair ups or also take remicade. I haven’t found someone who has had perfect success on the diet. (Not saying it doesn’t happen)

amother

↑ Red ↓

Fri, Dec 28 2018, 11:17 am

TranquilityAndPeace wrote:

Thanks for your wishes!!

I’m not really on Facebook but maybe it would be worth it.
BH in her case the humira is working amazing and she grew an inch!!! For the first time over 2 years and is completely pain free.

amother

↑ Mauve ↓

Fri, Dec 28 2018, 11:22 am

amother wrote:

Wow, didnt realize that about coming off humira. I hear. Thats tough.

(Diet wise-I do know multiple people who have been symptom free 100% through SCD diet. One even came off the diet after 3 years and 10 years later is still symptom free-she had flare ups for years on all sorts of meds before she tried SCD)

amother

Ruby

Fri, Dec 28 2018, 1:18 pm

My husband used to be on Humira for Crohns until it stopped working for him. He ended up with complications and needed to have part of his colon removed.

He is now on Entyvio, which is an IV infusion once every 2 months.

I believe Entyvio targets the gut directly, while Humira has more of a widespread effect on the body. Maybe this is something you can look into? Once every 2 months is a lot less often than every other week.

I believe I have also heard of people who went on the SCD diet and were able to completely eliminate taking meds.

Good luck to you and your daughter!

ra_mom ↓

Fri, Dec 28 2018, 1:37 pm

amother wrote:

Speak to your GI about medication not just a nutritionist. What she's saying doesn't make sense. There are many different medication options to try if Humira stops working for a patient.
And it's not just cold turkey off of meds either. There's a process.

amother

↑ Red ↓

Fri, Dec 28 2018, 2:04 pm

ra_mom wrote:

The meds are working great. The question was can you stop humira that is working and try a diet and go back on the meds later if the diet is not working out. I was told you can’t go back on by GI also.

I think my overall issue is I feel the weight of making all these decisions so heavy.

Like maybe we should have tried the diet first. (GI said she neede a liquid diet for 3 months to heal and then switch to scd) but she was in so much pain then even on steroids we just jumped at humira. But now it’s scary to think of side affects.

amother

↑ Mauve ↓

Fri, Dec 28 2018, 2:18 pm

amother wrote:

Side effect wise....when we were looking into it for my daughter we did so much research and in the end didnt feel that scared about it...there was one thing I remember about being at increased risk for lymphomas ch"v BUT BUT BUT the increase in risk was tiny. My GI showed us the studies, it was like from a 2% chance in ppl without humira to like a 3% chance on humira. I am making up the numbers because I dont remember but I do remember it was so small that me and my husband both said "oh, thats it?"in relief

↑ ra_mom ↓

Sat, Dec 29 2018, 6:37 pm

amother wrote:

She should diet while ON the humira.

amother

↑ Red ↓

Sat, Dec 29 2018, 7:45 pm

amother wrote:

Thank you for sharing this. Every time I google humira these facts terrify me.

↑ Librarian

Sat, Dec 29 2018, 8:51 pm

It is a FACT that even that !% increase in risk is only if Humira is taken in tandem with MP6. Humira on it's own does not have any increase in risk. Please make an appointment with Dr. Marla Dubinsky at Mt. Sinai in NYC. She is the absolute authority on pediatric Crohns. She is the one who conducts the FDA studies and she is at the forefront of the new drugs that are in development. Dr. Dubinsky is the very BEST.

amother

Yellow

Sat, Dec 29 2018, 9:36 pm

My husband has Chron’s and almost died from it recently. He ended up having emergency surgery and had several cm of his small intestine removed. And then had to have a follow up surgery a few months later.

He was in remission for a number of years doing very well on a combination of medication and following a special Chron’s diet. However we wanted to get pregnant with another child and my husband had to stop one of his medications for a number of months because it could cause birth defects. Luckily we got pregnant quickly and have a beautiful healthy baby. But after my husband stopped one of those medications for that short duration he began having severe Chron flare ups again and ended up being hospitalized once every 6 months for a span of 2-3 yrs before the emergency surgery situation. B”H since having the surgery my husband is doing well and is on a new maintenance medication.

Every Chron’s case is different. I would just be very cautious before stopping medication that is currently working. Diet alone won’t work for every person, as I can personally attest in my husband’s case. And being hospitalized and having surgery is no fun and has serious risks too. But if the medication is currently working and preventing hospitalization and surgery, that’s great and I would be very hesitant to change it. Just want to share my experience. Watching my husband deal with these Chron’s flare ups and hospitalizations and surgeries has been awful, especially the last few yrs.

My recommendation is to get a 2nd and even a third opinion on treatment options. B”H my husband has one of the best gastro doctors in our area & his doctor has even consulted other well known specialists on the best treatment plan for my husband. I’ve also gotten separate independent reviews done by other experts on my husband’s medical situation and they have been in agreement with the current treatment plan. It’s definitely scary using some of these drugs and the potential side effects, but my husband looks at the positive. They are keeping him alive, overall feeling great and he’s able to work and live a productive life. His doctor is carefully & regularly monitoring him.

amother

Lilac ↓

Sat, Dec 29 2018, 10:22 pm

Firstly, sending hugs to you and your daughter.
Many people have weaned of medication by doing the diet in conjuction with medication and then slowly lowering the dose. There are peolpe who healed themselves from crohns through healthy lifestyle changes, emotional healing and more. Its obviously not for everyone but do yourself a favor and research it.
See the 2 videos linked

https://m.youtube.com/watch?v=.....t=12s

https://m.youtube.com/watch?v=.....t=16s

Best of luck with whatever your choose to do!