Medication not working

[Catlover96]

Hello,
I have been on Budesonide for 2 months and humira for two weeks. I changed my diet, less dairy, less sugar and nothing fried. I have not seen any real improvement... I am starting to struggle with depression and anxiety. I can't always predict my flares.. I get abdominal wall cramps that wrap around and go to my back that make it hard to breathe. I have pain by the right side of my bellybutton that feels best lying on my stomach. I get random gallbladder attacks that are not related to food.My doctor doesn't think my crohns is serious because I don't have blood or mucous in my stool. But I feel like I am missing something. Some piece to why my medications aren't working. And I am getting sick of the whole "just give it time." I have been 2 months, 2 months of medications not helping.
Has anyone else struggled like this? I am reading about immune systems not recognizing biologics so they won't do anything with it. Maybe that is a possibility for me?? I mean I got pneumonia 3 times and my body made zero antibodies. I also had c-diff back in march. I am just lost and confused and sad and angry.

 

[ronroush7]

I am sorry. I hope you atart feeling better soon.

 

[JaimeM]

It could be your gallbladder isn't functioning correctly. You can have a nuclear medicine scan called a HIDA scan. It detects how well your gallbladder is functioning. 2 months probably isn't enough time to know if your medications are working. Especially if you had something like cdiff to complicate it. Have you been tested for cdiff recently? When I had cdiff it created a lot of the same symptoms as my crohns. It also flared up my crohns after 6 months of being unable to get rid of cdiff-i ended up with a fecal transplant. Anyway it took a long time for my bowel to heal from the medications. You could also request and MRE or a CTE. They would determine if you have any kind of stricturing or fistulas forming which could also be causing your pain. I've never had the radiating pain like you have, and that does sound more gallbladder. But with your history of Cdiff I would make sure you didn't have a recurrence of that. Is Humira your first biologic? There are several types of pneumonia, so you wouldn't necessarily create antibodies that would protect your from future pneumonia. If you've been on any type of steroid, antibiotic or biologic for a period of time, your immune system would be weakened and it would make you more susceptible to any type of contagious disease.

 

[my little penguin]

Two weeks really isn't long enough for humira to work
Humira takes a long time to reach optimal levels
Closer to 3-5 months
Not what you want to hear
Can you switch from buesonide to oral prednisone instead ??

Have you tried een (exclusive enteral nutrition) formula only no solid food until the humira kicks in ?
It's as effective as steriods -they use it a lot in kids

Ds has been on humira for over 5 years
But the waiting for is it really going to work was very hard in the beginning

 

[Justanothercp]

Have they done CT scan to rule out stricture?

 

[Catlover96]

JaimeM I had a simple ultrasound of my gallbladder last year 2 weeks after an attack and it didn't show any stones. But I guess that that wouldn't show proper function. I don't have any cdiff symptoms so I think it's gone...? I had it in march and was on flagyl for 2 weeks. I had a small bowel follow through and was told "yep you have crohns" my doctor isn't taking my pain very seriously. I have been getting pneumonia shots for the last few years because my allergist ran a few limited tests and realized my immune system doesn't work properly in making antibodies. And this was all done a few years pre crohns and humira. And yes humira is my first biologic.

 

[Catlover96]

Have they done CT scan to rule out stricture?

no just a small bowel follow through

 

[Catlover96]

Two weeks really isn't long enough for humira to work
Humira takes a long time to reach optimal levels
Closer to 3-5 months
Not what you want to hear
Can you switch from buesonide to oral prednisone instead ??

Have you tried een (exclusive enteral nutrition) formula only no solid food until the humira kicks in ?
It's as effective as steriods -they use it a lot in kids

Ds has been on humira for over 5 years
But the waiting for is it really going to work was very hard in the beginning

I really dont want to take prednisone. I am
Currently mid-paramedic school and I am vain. I have cut back to just bland food.

 

[JaimeM]

good luck in paramedic school! i'm actually in the middle of my AEMT class right now. Been an emt for 8 years, figured I could at least do some ALS care.

 

[Catlover96]

good luck in paramedic school! i'm actually in the middle of my AEMT class right now. Been an emt for 8 years, figured I could at least do some ALS care.

That's so cool!! I Just became a basic emt met last summer...

 

[hawkins090]

It takes time. You will see the improvement.

 

[emilyt804]

Ask your doctor about buspirone. I did, and it's helped a lot.

Buspirone can also make you constipated, so be careful. I'm on about 5 mg/day. I'd like to be on 15 mg/day, but my body won't take it, because I have a stricture. Thanks, body!

A B-complex vitamin can also help you to feel less sad. I really like the Rainbow Light brand for supplements. https://www.walgreens.com/store/c/r...3772&sst=80e56c74-a677-4b02-9962-96b965359ed5

The Rainbow Light brand are chewables, so if you have problems with nausea, this may help!

I also really recommend taking Yin Yoga, or restorative yoga, or meditation classes to deal with the mind-body impacts of Crohn's.

And, personally, I really really hated Entocort with a flaming passion. Prednisone was much easier on my body than the steroid you're on now. It may be worth asking your GI if you can switch.

I love you and I want you to know that there are people on this board who have been there, and we care.

 

[emilyt804]

no just a small bowel follow through

I had a MRI with contrast in February of this year, which finally showed my stricture.

MRI with contrast is a test I personally found way easier than small-bowel follow through.

You just drink this sort-of-gross lime-flavored soda, and you're good to go! It's kind of a lot of fluid, but it's way easier than what you've already been through.

 

[aweitzm1]

My doctor said you can also see false remission results i.e. feeling better also on Humira. She said the only way to really know if you are in remission is to do another colonoscopy to see if the inflammation is gone.