• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Any suggestions? Rough medication past, not sure where to go next

I was diagnosed with Crohn’s disease when I was 17 years old, after years of undiagnosed issues. I had uncontrolled bleeding that led me to be hospitalized for two weeks at the beginning of my diagnosis. I was given a dose of Remicaid in the hospital as well as a variety of other things (I.e., Flagyl, Prednisone, a pic line, etc) to get me to remission. At the time it was great and helped me to regain my life as a very young adult. A couple years later I started Remicaid infusions regularly. I tolerated them well until I didn’t- I began having arthritic symptoms that were crippling. I then went on Humira- it worked until it didn’t and I had to have a bowel resection while on it due to a structure in my terminal ilium (I was 25 at this point).It seemed that the medications masked my overt symptoms and the disease just kept silently building scar tissue and causing problems without my knowing. After that I was put on Cimzia. That worked until I developed Lymphoma at the age of 28, as a result of the biologics I had been on for so long. Since that time I have been off of medication and very wary of going back on. I have taken corticosteroids occasionally when flares have been really bad but have generally managed with diet, exercise and management of stress- which has had varying levels of success. When I have gone on steroids I almost immediately end up with infections of some sort, which ends up being more of a disruption to my life than my Crohn’s symptoms. At least with “my normal symptoms” I know what to expect and how to deal- pain has been part of my life for so long that I often don’t modify my life for it and just push through, as I am sure many of you are familiar with.
So here is my current issue (I’m now 37 with two kids and a hope for a third) - I have been flaring more and more often over the last couple years. I have a significant structure at my terminal illeum again. I have tried steroids a couple times, I have modified my diet, increased yoga, done acupuncture, worked out more, reduced stress as much as possible, etc. and things are getting worse. Lately I haven’t been as good about doing all the things listed because I just feel too crappy and lethargic to put in the effort after work and family. The flares get better each time but come back with a vengeance and it is getting to the point that it is disrupting my life in ways I haven’t allowed it to in a very long time. My options are to try medication again, which makes me insanely anxious to even think about or to try surgery. Anyone have any similar experiences? Any suggestions? My doctor is open to surgery and understands my medication reservations but it’s my decision and one that is really weighing on me… which of course doesn’t help! Thank you!!
 
I have a similar story with 1 big difference; I've had 2 bowel resection that afforded me years of full remission. Diagnosed at 11 after years of mis-diagnosis, first surgery took a bit of my colon & my terminal ilium & gave me 8 years of remission. In my early 20s I started to flare with ever more frequency; meds were not having any impact & as I was at college & didn't want to manage my disease or medication I opted to have a 2nd surgery. This time the surgery afforded me nearly 15 years of remission of varying degrees. I'm now 42 & have had to start Humira a few years back after a bowel obstruction helped announce my disease's ugly return. Given all your struggles, I wouldn't think twice about surgery. I know the thought of surgery is scary (as it should be). But my experience is that it has given me good chunks of my life back.
 
6-8 week course of 100% liquid diet, with a proper formulation, modulin ibd or elemental 028. Plus steroids to boost effectiveness.
Then 25-50% proper liquid formulation daily along side food as maintenance.

This is highly effective In a very high percentage of people and does not supress the immune system In any way.

Depends how tight your strictute is, and what country your in to be able to get the proper liquid formulations.

I'm bang on the same age as you, and have 2 strictures, I maintained a very deep remission with a really high quality of life 2010-2020 with this technique.

Had crohns since 1996 ish.

Big huge flair and hospital 2021 steroids and 100% liquid diet has got me back in remission after 4 months, now monitoring, may have a biologic or surgery or keep to the same 25% elemental 028 and 75% food.
 
I'm also interested to know.

How is it being on a biologic then needing surgery.? Did symptoms creep up over months or years while on the drug, or did you simply wake up one day in extreme bad pain ?
 
I have a similar story with 1 big difference; I've had 2 bowel resection that afforded me years of full remission. Diagnosed at 11 after years of mis-diagnosis, first surgery took a bit of my colon & my terminal ilium & gave me 8 years of remission. In my early 20s I started to flare with ever more frequency; meds were not having any impact & as I was at college & didn't want to manage my disease or medication I opted to have a 2nd surgery. This time the surgery afforded me nearly 15 years of remission of varying degrees. I'm now 42 & have had to start Humira a few years back after a bowel obstruction helped announce my disease's ugly return. Given all your struggles, I wouldn't think twice about surgery. I know the thought of surgery is scary (as it should be). But my experience is that it has given me good chunks of my life back.
Thank you so much for responding and sharing your story! Surgery is what I’m leaning towards and it never used to scare me but having kids changed that a bit!
 
I'm also interested to know.

How is it being on a biologic then needing surgery.? Did symptoms creep up over months or years while on the drug, or did you simply wake up one day in extreme bad pain ?
The pain just showed up one day and continued to get worse over a short period of time. I had been having some arthritic pain and what I call feeling “bruisey” (feels like your body is bruised all over but there is nothing there) a bit before the stomach pain. Within a month I couldn’t go to work and checked myself in to the hospital so that my surgeon would have to see me right away rather than schedule me out.
 
6-8 week course of 100% liquid diet, with a proper formulation, modulin ibd or elemental 028. Plus steroids to boost effectiveness.
Then 25-50% proper liquid formulation daily along side food as maintenance.

This is highly effective In a very high percentage of people and does not supress the immune system In any way.

Depends how tight your strictute is, and what country your in to be able to get the proper liquid formulations.

I'm bang on the same age as you, and have 2 strictures, I maintained a very deep remission with a really high quality of life 2010-2020 with this technique.

Had crohns since 1996 ish.

Big huge flair and hospital 2021 steroids and 100% liquid diet has got me back in remission after 4 months, now monitoring, may have a biologic or surgery or keep to the same 25% elemental 028 and 75% food.
I had never heard of this but definitely something to look into. I am in the US so I would imagine I would be able to find the proper formulation. Do you eat a modified diet when you are doing 75% food? Thank you for sharing and so sorry that you are having issues recently!
 

my little penguin

Moderator
Staff member
Een (exclusive enteral nutrition ) is used in the US - mostly with kids but can be used for adults
Your Gi should have samples to try and your insurance would cover the formula as a durable medical equipment supplies for infusion therapy

Options for adults are
Polymeric (boost ,ensure ) easiest to drink but hardest to digest
Semi elemental (peptamen ) broken down peptide chains so easier to digest -hard taste wise
Elemental (vionex ) broken down to amino acids which is what your intestine breaks down food into so very easy to digest but extremely difficult to drink most older kids and adults need an ng tube

Formula only for 8 weeks is standard for kids
As effective as steriods

Then kids do an option of 90/10 —90 % formula 10% solid food
And later try 80/20
It works for a few
Once you introduce solids inflammation comes back typically
Except for a few who used cded diet
That starts with formula and adds specific foods in a specific way
Your Gi should have the papers and studies on it
Again works for some not all


 
I don't follow any specific diet book on it, just eat the foods I know are good for me and cook them in the way is best for my crohns.

Usually I'll have some lunch 2pm meal 7pm rest of time elemental 028.

This is the main medication in Japan, and some studies show it more effective than biologics.

For me I know it 100% worked I would never have gone a decade in deep remission with 2 x strictures without it, crohns before I met these drinks was a rough road.
 
With the elemental 028, I think this is broken into amino acids.

The taste is bad, however if made with chilled water it completely transforms it, and orange elemental 028 chilled is my favourite tasting drink, even more than tea coffee or coke Fanta e.t.c.

So you should try them chilled completely transforms mine.

Also when doing an 8 week 100% course they say even bottled water must be boiled then chilled first incase there is a risk of bacteria in it.
 
Does anyone know whether they are ok when you’re pregnant? I’m not yet but hoping to be in the spring which is another factor in why I have been leaning towards surgery to jumpstart a longer remission.
 
A lot of studies don't account for using them as maintenance , but they can maintain remission, and this really also baffles scientists as to the exact mechanism why.

They have no side effects and you get far more nutrition from them than food being a crohns patient.

A large amount of strictures are inflammation and can be resolved with medication. However if the stricture is tight and mainly fibrosis medication won't work, and surgey is required.

They are getting very close to being able to work this out and treat crohns much better.

But I think for now, you will have to research talk with your gi and make the best choice for you based on your lifestyle your requirements and your symptoms.

Maybe you could even use both options surgey and the drinks.
 

my little penguin

Moderator
Staff member
So pregnancy has different nutritional requirements
Neocate splash (replaced E028 years ago ) is only nutritional complete for kids under 13 so would not work for an adult or a pregnant adult
The Gi should have a nutritionist on staff to help
Since what an adult needs vs pregnant are far different
You may need supplemental vitamins /oils etc….to be added to the diet depending on the type of formula you use
Kate farms has some organic peptide formulas not sure if they are for adults

I don’t have crohns but my child was dx at age 7 (now 17) which is why I know the kiddie stuff
Not adult stuff

Different brands of formula to talk to the doc




My kiddo did een many times with meds and cded
Still on meds
 
I'm not sure about the usa brands.

Elemental 028 contains everything needed to live on.

Modulen, we have that in the uk, I'm sure that contains everything to live on also, however at week 6-8 you add food anyway.

Modulen takes about 4-5 weeks to induce remission and elemental 028 1-2 weeks if I recall.

I remember the first time I was told, no food and drink elemental 028 only, first 3 days is very hard but omg wasn't it powerful on the crohn's, for me the first time it felt like I was drinking a fire extinguisher. I felt the effects very fast.
 
Top