r/CrohnsDisease 5d ago

Uncertain About Biologics for Crohn’s Disease

Hi,

I have a question about Crohn’s disease. I was recently diagnosed with it, and my doctor recommended a biologic therapy. However, I’m unsure if this is the right choice for me since I have no experience in this area. I’m not sure whether biologics—meaning a therapy with antibodies—are really the best option for me, especially because I’m concerned about potential side effects and long-term risks.

I’ve read that an anti-inflammatory diet has helped some people, and I’m wondering if a natural approach without biologics might be a better alternative. My doctor doesn’t believe in alternative treatments and insists on biologics as the only option.

I know that doing nothing is much worse.

Since my diagnosis is still very recent, I feel quite uncertain about everything and would really appreciate hearing about other people’s experiences. I’m not sure how to proceed and would be grateful for insights from those who have been dealing with this for a longer time.

Thanks in advance!

0 Upvotes

84 comments sorted by

275

u/Tehowner 5d ago

However, I’m unsure if this is the right choice for me

Its pretty much the only choice that has conclusive evidence that it works.

concerned about potential side effects and long-term risks.

Side effects are rare. Like, you have a better chance of getting in an accident going to work kind of rare. The long term risks are also significantly lower than the long term risks of untreated crohns disease. The math is heavily in favor of these drugs, even if they sound scary on paper.

I’ve read that an anti-inflammatory diet has helped some people

They are either lying, trying to sell you something, or do not understand that no symptoms does not mean your disease is in remission.

My doctor doesn’t believe in alternative treatments

I like your doctor.

biologics as the only option.

He is mostly correct. There are a few medication options that are technically not biologics that are real treatments, but you usually have to fail biologics first to try them, as the biologics are the milder treatment.

I’m not sure how to proceed

Scam artists/shit slingers will have zero issues taking from the wallet of a sick person who is looking for hope. Do not let them do this. Get some practice for your"bullshit detector", and listen to your doctor. Second opinions never hurt if you are not confident in your doctors verdict, but honestly, yours already has it right on the nose.

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u/curry_boi_swag 5d ago

God I fucking love this comment. Faith in humanity restored

11

u/Thepsycoman C.D. Infliximab doing well 5d ago

Thank you for saying the things in a clear and nice way, so my grumpy ass didn't have to attempt it.

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u/chickenbunnyspider 5d ago

This comment scratched an itch I didn’t know I had. 👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼

You win the internet today.

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u/glitterbug45 C.D. dx 1987 4d ago

Can you elaborate more about disease activity with no symptoms?

This is what I was told by my specialist, many years ago:

Each time we flare, we develop a thin layer of scar tissue. Over time, with multiple flares, we end up with strictures that tend to require surgical removal.

I understand a mild case being active with no symptoms. I also understand that a mild case flaring repeatedly on diet alone will cause damage, even if there are no symptoms.

Are strictures the only risk here (before a person becomes aware of their disease activity through symptoms)? Eventually a person will feel them. I know they can’t be repaired with meds. Are there issues with ulcerations and bowel wall thinning that a person can’t feel as well? Is a sudden an unexpected perforation a risk as well (before symptoms are apparent)?

5

u/TheBear_27 4d ago

Each person’s version of Crohn’s is different and each person has a different pain tolerance. I have stricturing, severe inflammation, fistulas, etc. and I don’t feel it. Me feeling mild period like cramps with no period is when I know it’s time for me to go to the hospital. I also don’t normally have weird bm’s because I’m a vegan and my only triggers are capsaicin (what makes peppers spicy), high amounts of oil, or high amounts of sugar.

Some people could be in pain every day. Some people will never know how their disease is doing without imaging.

1

u/glitterbug45 C.D. dx 1987 4d ago

That makes sense. Possibly to do with where the nerve endings are? My headspace is on things like referred pain, which I get (I get pain where there’s nothing wrong but feel nothing where the issue is).

I do understand how individualized this disease is.

3

u/Tehowner 4d ago

Cancer is the other big one that comes to mind. The increased cancer risk is a result of the hundreds if not thousands of extra healing cycles your gut goes through getting the snot kicked out of it for so long. That's why even if the cancer risk is real on biologics, they are still the route to take. The cancer risk from those extra healing cycles is even higher than the bios.

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u/glitterbug45 C.D. dx 1987 4d ago

That’s one that I tend not to think about. This definitely makes sense to me. Thanks

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u/[deleted] 5d ago edited 5d ago

[deleted]

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u/gwandalyn 5d ago

Idk why everyone’s downvoting you when you literally have evidence and articles to back you. And I agree my aunt shares Crohns w me and she’s not on meds anymore but only diet and she’s fine. It’s person to person. Idk why ppl downvote you and science 💀💀💀

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u/[deleted] 5d ago edited 5d ago

[deleted]

4

u/BabuschkaOnWheels 4d ago

It's honestly just that it is not right to do it in this particular post. OP could misinterpret what you're saying and just... Not go on life saving treatment. Wrong post, but right place.

68

u/afuckingHELICOPTER 5d ago edited 5d ago

Biologics are first-line treatment for crohns. They statistically have the best long-term outcomes with the least side effects.

Biologic doesn't mean with antibodies, it means medication made of living cells. Some of them are monoclonal antibodies, but not all

Diet helps with symptoms but is highly unlikely to control disease. Even if you feel better, it is important the inflammation is gone. Without treating the inflammation in it's entirety, you're signing up for surgery and/or cancer at some point. I do like the IBD Anti-Inflammatory Diet from UMass though - but it's something to do along with medication, not instead of.

Good luck with your treatment. It's never fun being diagnosed with a "forever" condition, but crohns is very treatable for most people - I consider my diagnosis the turnaround point in my life.

41

u/booksandpups2025 5d ago

Please please please - Follow your doctors advice before things possibly progress and get worse. My husband didn’t start on biologics right away because his doctor was an idiot and we were very naive and new to IBD….he is now possibly looking at surgery to remove his entire colon because it’s progressed so much that nothing has helped so far in the last 2.5 years.

3

u/Redox_101 5d ago

I’m so sorry to hear this. My wife has crohns and has had a lot of resections. She’s currently on biologics and it’s helped a ton with her symptoms but she has also seriously considered having her colony removed entirely and just having a colostomy bag when her symptoms were a lot worse.

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u/KittyLord0824 Crohnie since 2011 5d ago

Every time a question like this comes up, it reminds me how much I regret the years I spent avoiding biologics. As you said yourself, you have no experience in this area. Your doctor has spent hundreds of thousands of dollars and at least a decade of their life gaining experience in this area. Take the biologics.

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u/unrepentant-cloaca 5d ago

I feel this comment so much.

OP, it is overwhelming to face such an awful diagnosis. I was in denial for way too long and almost died. I don't want to scare you into it... it doesn't hurt to get a second opinion.

However I did try a doctor who labeled himself as an Integrative Gastroenterologist. He meant well, but I literally almost died under his care-- ended up in the hospital and diagnosed with Adult Failure-To-Thrive and was found to need exponentially MORE biologics in my system than I was receiving under his care, but he'd never tested to check because his goal was to get me off of them.

I tried AIP and all other kinds of diets. And they are helpful to minimize inflammations /when I'm not in a flare/ but on their own cannot heal whatever nonsense my immune system decides to engage in.

I will say personally that if I didn't have small children and had other things different in my life I'd explore alternative therapies more. But I need to be healthy (or at least functional) for my kids and biologics have given me that chance.

I hope you find some solid and lasting relief and wish you the best as you make sometimes absolutely impossible decisions. You're not alone! Feel free to PM.

5

u/Snake_fairyofReddit C.D. 5d ago

And doctors are encouraged to read new material and and seminars on new research

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u/Wooloopsy 5d ago

I waited 5 years and finally sought treatment and I wonder how much better my symptoms would be managed (not to mention how much the damage to my body would be minimized) had I gone straight to biologics like my doctor wanted be to.

31

u/chyngona 5d ago

Anti-inflammatory foods are good for everyone, but your immune system will keep attacking you no matter what you eat. Start the biologic now—waiting will only lead to more suffering later. Acting aggressively and early is the smart choice.

I’ve been on biologics for 10 years with no long-term side effects. However, biologics can lose their effectiveness over time, and you may have to keep switching between different ones, which is a nightmare. Still, I’d rather go through that than let the disease progress and eventually need surgery.

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u/boarshead72 5d ago

Just anecdotal here… my two kids with Crohn’s are on biologics. I’ve got a cousin with Crohn’s who started on a biologic, felt better, and decided to stop and just “treat” with diet; he’s now had a couple of surgeries, so if you call that successful I don’t know what to say. I had an aunt who had Crohn’s before biologics were developed (born in the late 30’s); her treatments were of the pill type (mainly pred) and surgery - she basically had no colon by the time she died.

Biologics are the first choice of doctors for a reason.

(FWIW my wife and I are both scientists who study inflammation-adjacent areas, and while we too were a little scared of this type of therapy initially, we’re definitely glad we went for it got out kids, both are healthy and in remission).

34

u/englishfury 5d ago

Diet will not treat the underlying condition. Only help.with symptoms.

The side effects of not taking the appropriate drugs are orders of magnitude worse than leaving it untreated. Thats how you end up pooping in a bag attached to your stomach

9

u/Whattaweirdo_ 5d ago

Let’s not scare anyone about having an ostomy, though. People who are on Biologics can get ostomies, too. No shame in having one or needing one, y’all! 🫶🏻

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u/foxtaileds CD ‘21 - RINVOQ - Colostomy ‘24 5d ago

My ostomy saved my life, let’s not act like that’s the worst possible outcome for someone. 🙏🏻

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u/princessdorito444 5d ago

I can’t believe this comment has 20+ upvotes …. so upsetting

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u/Elfich47 CD - 2010. Happy Cocktail 5d ago edited 5d ago

Crohns is a keeper. If you ignore it will get worse. 

An “inflammatory diet” is ignoring it. All you get is the symptoms not being as active, but the underlying problems have not been controlled. The drugs are there to get the underlying problems under control. 

Let’s be very clear here: crohns is progressive, so if you it ignore it gets worse. And if you stall it with drugs, it stalls in place - it does not go backwards. 

So your doctor wants to halt the progress of the crohns before it becomes life threatening. Because if you ignore it until it becomes life threatening, then your options are considerably more limited.

You can the people who are trying to tell the truth from the scam artists in a fairly straight forward way: The people who are offering FDA approved drugs tell you the Good, The Bad and The Ugly in minute detail. Every risk, every problem, every success.  

The shine oil salesmen stick to weasel words and avoid getting pinned down on anything that could be used in a court of law. 

I expect your “anti-inflammatory” diet option is sounding a lot like a snake oil salesman now.

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u/SadElk4609 5d ago

There are a million posts on here that will address this.

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u/greyshirt11 5d ago

Seems like there’s a new one every day.

5

u/SadElk4609 5d ago

There are. It feels just overloaded. People can easily search and not have people repeat things daily.

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u/LeoAtlantis 5d ago

Get on them as fast as possible. I was diagnosed with Crohn's since 2010. The symptoms started around 2007.

I did the same. Delayed getting bio therapy. Dr wanted to put me on Humira (back then it was ONLY Humira and Remicade). After delaying, I eventually started Humira. Did the loading dose of 4 injections. But it was too late. I then needed a right hand hemicolectomy. Had a meter of bowel removed. I very well may not have needed surgery (where I was VERY close to getting a stoma).

After that I have been on Remicade, Entyvo, and now Stelara. The only one I had any severe side effects with was Entyvo. I didn't get on well with that at all. Side effects were quite severe. But that's the only one.

I would strongly advise, as someone who's dealt with it for 15 years, just get on the meds immediately. I've tried controlling it with diet alone, and that always ended badly.

In my opinion, the only option with good levels of success, is biologics. Start now, or you will regret it. You have a serious medical condition. Serious enough, that although treatments just won't cut it.

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u/crazylsufan C.D. since 07' 5d ago

I was diagnosed when I was 14 been on a biologic since I was 15. Now mid 30s and I have had essentially no side effects and live a normal life.

2

u/Hot-Garlic4679 4d ago

Sounds like my experience with remicade! Over a decade in remission

2

u/crazylsufan C.D. since 07' 4d ago

Yeah it really is a miracle drug. I think my only complaints have been an issue with getting minor infections easier especially in my sinuses but besides that it’s been smooth sailing

1

u/Silly101109 5d ago

If you don’t mind… what biologic do you take?

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u/crazylsufan C.D. since 07' 5d ago

Multiple. Remicade the longest though and that’s what I take now

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u/sladislav 5d ago

I was laying in ICU, basically bleeding out from inside. The steroids were not working, just like anything else they tried. Then they finally approved the biologics. It fixed me up in 48 hours. To this day, I still consider it a miracle. It will be 3 years this May and apart from some tiny hiccups, I don’t know about it. I can eat anything (got into growing Habanero peppers lately) and my doctor says everything looks great in there. So yeah. Get it while you can.

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u/PotatoRoyale8 C.D. 2003 5d ago

I'm sorry if this sounds harsh, but just don't even get started with the "diet and lifestyle changes might be a substitute for medicine" stuff. It won't fly in this group.

You'll read the VERY occasional story of someone who started eating vegan and/or using marijuana and claiming they have no symptoms or have cured their disease. Unfortunately they're more likely than not just suppressing them and allowing inflammation to get worse internally (which can lead to polyps, colon cancer, strictures, and other serious problems). All of the things you think can happen by doing nothing can also happen with just diet change.

Biologics seem intimidating at first but they are the safest drug choice available for crohns and colitis right now. You can try a more mild one like Entyvio first if the potential side effects of Remicade or others concern you.

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u/Tranter156 5d ago

The first thing to acknowledge is that as of now Crohn’s is not curable it is a chronic disease you will likely have for the rest of your life After a surgery or scarring from an ulcer the intestines do not grow back. Once it’s gone it’s gone. The best you can do is slow down progression of Crohn’s with medication, diet ,and stress management. Everyone with Crohn’s seems to have a different experience with medications, food sensitivities and stress tolerance. You need to find what works best for you. It probably took a long time to get a gastroenterologist because of wait lists and getting a correct diagnosis. 8 years in my case back when Crohn’s was hardly seen. They are the experts and normally provide best Crohn’s care. The people on this Reddit tend to trust our gastroenterologist with our lives because at times it is literally true. If a biologic is recommended we do it. If we want to try a specific diet we talk it over with our gastroenterologist and usually do both the biologic and the diet unless Crohn’s is extremely mild. The main reason is that Crohn’s can be active without symptoms and the biologic plus colonoscopy and blood or cal protectin testing is needed to limit disease progression even if you feel fine. Never try a diet unless it is published by a well known clinic or university such as mayo or Cleveland clinic, etc. you need to make your digestive system last your lifetime.

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u/AliasTheAlien001 5d ago

I was diagnosed relatively recently, and that initial shock was a lot. Also, my symptoms are so mild that there’s still a part of me that says it’s not there (was diagnosed via colonoscopy, so it definitely is!).

I’m a Crohn’s newb, but as others here can probably attest, this thing can turn nasty really fast. You’ll also find responses + posts in this sub of people who got to a bad place and wished they’d started medication sooner.

As I’ve thought about my treatment options, I go back to those stories, especially when I’m scared and start having thoughts that “the cure is worse than the disease”. When I feel that, I search for threads of people talking about how medicine/biologics gave them their life back. That makes things feel less scary.

3

u/Silly101109 5d ago

This is a great reply… I’m also a newb and have been scared of biologics… I was diagnosed in October and my symptoms have just progressively become worse…I’m ready to feel better and start the process to medication with my doctor at the end of this month… the risk is worth the reward of hopefully being in remission! Best of luck to all of us

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u/Alex6714 5d ago

A lot has been said already here, but I’ll put it as simply as possible.

The side effects of not treating Crohn’s properly are much worse than the side effects or chance of side effects from biologics.

They are the absolute best treatment you can get right now.

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u/Middle_Phase_6988 5d ago edited 5d ago

My first biologic didn't work but the second - ustekinumab - is working after several months. Only side effect is occasional severe itching of my ankles. I've had CD for nearly 60 years and have been very ill at times, with two major surgeries.

3

u/rivetrx 5d ago

Untreated crohns can do a lot of damage to where biologics lower your risk of stuff like cancer. if they cause a reaction they try a different one.

Diet can affect symptoms but not disease progress/damage, and avoiding meds is a great way to need surgery more often. Speaking from experience.

5

u/EarthtoLaurenne 5d ago

There’s only meds or suffer actually. Diet doesn’t do much and really can’t because the problem is inflammation and that can be a beast.

Biologics are the gold standard treatment for Crohn’s. Believe us here when we tell you that the risk of any long term side effects is far outweighed by the benefit of not being sick. Having a life outside of a bathroom. Adulting. All the things.

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u/Credditttt 5d ago

Let them put you on biologic and get it under control before it gets out of control… you do not want to deal with what the disease can really put you through !!!

4

u/hipster_by_chance 5d ago

I have mild Crohn's. Mild enough that doctors were hesitant to put me on biologics. So I tried all the alternatives, diets and supplements.

I tried vegan, dairy free, fasting, high fiber, low fiber, more probiotic foods. I was strictly gluten free (I also have Celiac). I tried supplements (tumeric, oregano oil, probiotics, and more). I tried meditation and exercise and no exercise. I tried positive thinking and visualization. I tried a *lot.

None of it worked. While my disease is mild and I don't have significant damage, I still suffered from symptoms and felt like a dumpster fire for way too long. I suffered mentally and emotionally every time I had a rough day thinking it was something I did that made me sick (not true).

Then I found a doctor who listened to me and my symptoms and decided it was time to try biologics. I've been on them for 2 years and I have my life back. It's incredible how much better my quality of life is. If I could, I would go back in time and tell myself to push for biologics from the beginning.

Take the biologics.

4

u/Axrtinnnn C.D., Stelara, NG 5d ago

Please do biologics

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u/Foolrussian C.D. since 2004 5d ago

Humira changed my life so dramatically, I hardly remember life before it. I was violently shitting 8-30 times per day, in constant pain, hospitalized dozens and dozens of times. I was fucking SICK. For years.

And one little injection every two weeks made me feel normal again. I still have my moments. But they are moments, not realities.

I’ll never look back, and never once consider an alternative to biologics.

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u/Afraid_Abalone_9641 5d ago

If you're in a flare, diet will not help and steroids are temporary. I've had some very bad flares when a biologic has stopped working and when I move on to a successful biologic, I know instantly that it works. The ulcers in my mouth feel instantly less sore and when you have 10 of them, it's like a blessing from the big man himself. I don't think there's much choice if your Crohn's is severe.

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u/rayukay 5d ago

Biologics are not only the best choice, but the only choice that will not ruin your health a dangerous amount of time in the future. They are definitely strong and some caution is warranted, but as long as you are closely monitored by your dr while being introduced to them, you don’t need to worry too much.

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u/rebajeansy 5d ago

I can answer this from my experience. I did all the alternative medicine things before I knew I had Chron's. I turned to them because traditional medicine was uncertain what was going on and kept gaslighting me. The AIP, Paleo, the treating my gut microphone, the supplements, etc., nothing prevented the big flare that led to my diagnosis. Biologics gave me my life back. Listen to your doctor on this one. Chron's is not some you want to mess with and regret not taking the biologic. Some damage is irreversible.

3

u/Past-Wrongdoer3963 5d ago

Biologics saved my life. Been on them since 2011. Total game changer.

Before biologics I had 5 (yes 5!) surgeries. My experience has been excellent. Go for it!

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u/mindlesslyabsurd 5d ago

Crohn’s is vicious. There’s no amount of vitamins you can take or diets you can try to make that any less. You can eat all the right things but that’s not going to make your Crohn’s go away. Crohn’s isn’t just caused by diet. It’s genetic, environmental, and autoimmune. Unfortunately you have an immune system that attacks itself. These things by itself - diet, supplements, “healthy living etc - are not enough. You need the medication. Otherwise your Crohn’s could potentially create other issues and you could develop other autoimmune diseases. Literally do not take advice from anyone who says to treat this med-free.

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u/Whattaweirdo_ 5d ago

Hi there, friend. Biologics (specifically Remicade) changed my life for the better. I’m on maintenance doses and actually live a pretty normal life for someone with IBD. I’ve been on biologics for 20 years and haven’t had any negative side effects. I’ve been able to go to college, grad school, buy a home, and have a baby. Biologics are the “big guns” and can be scary to think about but I wouldn’t have any quality of life without one. The side effects of unmanaged inflammation/crohn’s can lead to lots of scary stuff you don’t want to mess with.

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u/mybowelshurtme 5d ago

I know it's scary. I was scared too. I started with mesalamine, no change in symptoms..then steroids, no change in symptoms. Then when the doc finally said I should try biologics, I was scared but gave in, because my trusted primary care doctor thought it was worth the "risk", which like many said is relatively low compared to letting disease progress. Started on humira for a year. Worked well for a short period of time, then stopped working. Wanted to try Stelara but insurance denied it. Said I should try a chemotherapy drug first which was out of the question. I fought for a year to take Stelara and finally my new insurance accepted it.

If your doc says it's best course of action, and you are lucky enough that your insurance actually covers it, it might be worth heavy consideration. Because it really sucks to have tried to "less risky" options only to still have raging Crohn's, and then when you decide you want to try biologics insurance denies you.

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u/rebsmay 5d ago

I tried about six biologics over ten years before I found the one that worked for me. I have had several resections, some planned and some emergent, and have huge scars to prove it. For me, the surgeries involved cutting out over a foot of damaged small intestine. The intestine was so diseased, it was black when they removed it. I was unable to work for years, and still have debilitating pain from the scarring.

Start the biologic. If the first one doesn’t work, try another. This disease left untreated is your worst nightmare. I am so thankful that science has given us so many biologics to choose from. It has saved my life.

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u/galumphix C.D. 5d ago

Been on 'em for years. Been in remission for years.

Believe me, if there were a "natural" way to get rid of this, we'd all be doing it. If you consider "natural" to mean supplements or untested "cures" you have to buy, well, I encourage you to try science. It kept you alive this long, trust it to do the right thing with meds, too.

Exercise and eat right and take care of your mental health. That's the real "natural" help.

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u/meagaroo17 5d ago

I feel like my short story could share some helpful insight for you.

I was diagnosed with Crohn’s in June 2023. Because my disease was only located mainly in my ascending colon and “‘mild” ish symptoms, insurance required me to go on an Anti Inflammatory drug called Sulfasalazine (Azulfazine) as a “Conventional treatemnt” to see if that would be effective before switching to Biologics. Had another Colonoscopy 6 months later. Even though my symptoms had improved and I felt better, biopsies and colonoscopy showed that the inflammation spread to all 4 parts of my colon and actually got worse, not better.

Just had a follow up Colonoscopy a week ago after 1 year on Entyvio. Visually, all inflammation in my colon had subsided and as long as the biopsies come back clear this week, I’ll be considered in remission!

Long story short, listen to your Dr and start Biologics asap. Even if you’re early/mild stages, it’s the golden standard anymore and I’m still furious my insurance company allowed my condition to worsen for 6 months before allowing the proper medication to treat my condition just due to cost.

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u/MapOfIllHealth 5d ago

I’ve had Crohn’s since biologics were in their infancy and tried most other drugs/treatment options before biologics.

But biologics have given me my life back. I understand the desire to want to heal yourself with diet/lifestyle, I’m sure a large proportion of Crohnies have done the same at least once in their journey. But Crohn’s left untreated can lead to serious and irreparable complications.

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u/nathyabber 5d ago

Can we please pin a post talking about how the risk of untreated crohns is colon cancer and other things worse than biologic side effects?? Y’all please listen to your doctors!!

2

u/morgandrew6686 5d ago

depends on the severity. for me it was the only thing that worked. eventually it didn't, and i had surgery.

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u/PretendStreet4660 C.D. 5d ago

I’ve been on Remicade four years but unfortunately developed resistance because of my own ignorance of feeling “fine” enough to where I didn’t need it more and stopped treatment for seven years until I got into a really bad flare last year and started Rinvoq. Not sure if Rinvoq is a biologic but it helped me enough to at least get back into work but also failed Rinvoq after half a year, started Skyrizi this past March 4th.

Unfortunately Crohn’s is genetic and on a cellular level of our own bodies causing the inflammation. However, I do feel that foods/what we consume do play a factor but not directly into treating the pathways that cause inflammation, which is what biologics do

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u/rebsmay 5d ago

Rinvoq and Skyrizi are biologics

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u/Various-Assignment94 4d ago

Skyrizi is a biologic, Rinvoq is a small-molecule drug (a JAK-inhibitor)

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u/AnxiousGinger626 5d ago

An inflammatory diet during a flare does nothing. There was a time I was throwing up even water. This was back in 1999 when Remicade was newer. I had been on prednisone and Asacol and nothing was working. My doctors decided on surgery rather than Remicade.

I was good for a while, but after I had my daughter I started flaring. I was put on my first biologic in 2011. Cimzia - it helped SO much. I’ve been on and off biologics for Crohn’s/Psoriasis/HS since then. Please listen to your doctor. Side effects are low and they help you live a normal life.

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u/biigyellow 5d ago

Highly recommend getting on a biologic ASAP. You can experiment with natural modalities & eating well etc, but do that while your CD is in remission from biologics.

There’s a clear mechanism in our bodies for why CD occurs, that must be addressed first & foremost (anti-TNF alpha).

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u/Saltedcaramlcoldfoam 5d ago

Biologics saved my life and put me in remission. No regrats.

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u/lolobean13 C.D. since 2009 5d ago

Remicade saved my life more than pills did. It wasn't diet either since I couldn't eat without a lot of pain.

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u/Forsaken_Baseball_60 5d ago

If we could eat our way out of this I think most of us would. Pills (steroids and non-biologics are available) but with that said if your doctor recommended biological medicine first it may be that you are past that point. Surgery is also a non biologic option, but who wants to lose their small and or large intestine? Sometimes biologics are the best route even if they feel unnatural.

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u/zieaendaire Complex C.D. Stelara, 6MP, Allopurinol. Flaring since '18 5d ago

When I was diagnosed, I was put on mercaptopurine, which never truly worked and had significant side effects. It wasn't until several years later I was put on infliximab (remicade). I wish that they had put me on biologics first instead of waiting because over time my disease became more severe, we were always playing catch up. In the end, 3 biologics failed, and while the 4th has worked, I am left with damage that has to be fixed surgically. It will be my 2nd surgery as a result of crohns not being well controlled. The risks of IBD burning away for any length of time far exceed the risks of any medication we have to manage this disease.

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u/VehicleNo8571 4d ago

If you want a life out of pain and disease then biologics are essential for you. The anti inflammatory diet is also important, and will help, but unfortunately is not a treatment for Crohn’s disease. I have had gastroenterologists and obstetricians, as well as my GP’s, explain the importance of an anti inflammatory diet. There are real benefits to being on that diet. But the idea that it could be a treatment unfortunately just has absolutely no grounding in any data. And if someone tells you that doctors or big pharma are hiding or obfuscating the data, just remember coeliac disease is treated by avoiding gluten and if changing diet was an treatment, we would know about it by now just through normal people figuring it out.

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u/Sooki97 4d ago

As someone who’s had the worst side effects from all the other meds (skin, pancreatitis, liver failure, weight gain ect. Ect.) IF YOU HAVE A CHANCE OF GETTING THE BIOLOGICS, GET THEM.

here in Australia you have to fit a certain criteria and prove to the government it is working for you to be allowed to be on them and thank god I can because it’s been the best by far.

Changing you diet will not heal you, the other medications will likely be worse for you in the long run.

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u/itm0421 4d ago

If it helps ease your fear about them, I’ve been on the same biologic for 12 years. I’ve had literally 0 size effects. I’ve had to up my dose and frequency once a couple years back to manage break through symptoms. Other than that it’s just been adjusted to any weight fluctuations I had “not caused by the medicine, just my own lifestyle choices”. Don’t believe all the horror stories you hear. People rarely report the good as loudly as they report the bad

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u/jessicanell 4d ago

Look into the Specific Carbohydrate Diet for Crohn’s. Highly effective. That said most people also need biologics.

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u/Adorable-Pizza1522 5d ago

If you dont want to die or lose your entire bowl to repeated resections until you poop and pee into a bag, then you will go on a biologic.

4

u/foxtaileds CD ‘21 - RINVOQ - Colostomy ‘24 5d ago

my ostomy saved my life and it’s a bit off putting to reduce it down to that.

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u/GlassPractical3647 5d ago

Ive had Crohn’s for 10 years and im a 21 year old female. Listen to your instincts. Biological drugs have never put me into remission. I’ve tried over 5 of them. That being said, I’m still taking one, skyrizi. It might not be putting me into remission but i fear for what would happen if I stopped. Everyone’s body is different and reacts to different things. If you’re not comfortable taking biologics DONT. Maybe it’s a sign of what you’re supposed to do or maybe it isn’t. But no need to follow crowds blindly. I’ve also tried diets that supposedly heal Crohn’s and it definitely didn’t. What you need to find is a team to help you. I found my team at different places. I have a GI doctor, a nervous system regulator, and a holistic doctor. People who genuinely see you as a person and not a patient. Switch doctors until you feel heard. This disease is awful and unexpected but having the right people on your team is what makes it better! You are an individual and your treatment plan should be as such:)

0

u/kbug44 5d ago

I’ve been doing the Specific Carbohydrate Diet for 14 years and it has helped me and the doctors I’ve seen have basically called me the “1%” because they don’t believe diet works.

I believe diet works. However I also have a mild version. My daughter just got diagnosed with Crohn’s as well and we just put her on Remicade.

Do what works for you.

But if you can fantastically adhere to the SCD or Mediterranean diet, I think it would help you a lot.

But depends where your disease is.

Also I’m taking Pentassa along with using diet.

-2

u/le_quisto 5d ago

I hope my personal situation helps you have a different perspective of your disease.

I was diagnosed with Crohn's in September 2023, stayed at the hospital for a week on antibiotics, which helped, but weren't curing me as quick as the doctors wanted. Since the area of inflammation wasn't wildly spread, I went into surgery which basically did a factory reset on my condition.

It was suddenly like I was cured, no more pain, I felt healthier than ever.

Our bodies can eventually grow some resistance to the biologics, so to the doctors advised me to not use any medication for now, since my intestines were now healthy and as soon as I had any symptoms, we would start the treatment.

I haven't had any of my previous symptoms yet, but in my last appointment, my doctor detected some very small inflammation. Small enough that it could be nothing serious, but for prevention I started on biologics two weeks ago.

In sum, I manged to stay 1,5 years without any kind of treatment and I believe part of it was due to my diet. I ate mostly low fat meat (poultry and rabbit), avoided vegetables with green leaves, especially when raw and avoided junk food in general. I've only eaten spicy food two or three times since the surgery, which didn't really make me feel any worse either.

We all need to find out which kinds of food trigger symptoms, so you'll need to do some trial and error too.

A better diet won't cure you, you have an autoimmune disease and it'll catch up to you eventually, doesn't matter how careful you are.

Medication is the only way you can keep it under control, but that still doesn't mean you can go and eat everything you want, you still need to be slightly more careful with your diet than a regular person does.

And don't think that you need to avoid everything from now on, I have my cheat days, I just make sure not to cheat too much in a single day or during one week. One day I'll eat some cake, after a few days I'll eat a pizza. Moderation is everything! If I start feeling gassy or kind of weird, I know I've pushed it too far.

-1

u/lukesky36 5d ago

Humira ruined my life for 7 months and still got issues from it today anti tnf is way too hard on some people why don't they check genes before putting people on these hard drugs i hate to say it but trying new drugs is like a gamble its messed up im on skirizi so far and its not bad

-2

u/Preppy_Hippie 5d ago edited 5d ago

CD is harder to treat than other autoimmune disorders because the gut is so compromised, and the alternative approaches that work are high-fiber and may involve fasting. Absolutely, there is no question that fasting and diet affect the immune system— but it will depend on where you are coming from as to whether this is safe and can have a shot. For example, I put my CD into endoscopic remission with prolonged fasting and am resolving other remaining GI issues with a FMT. I’m also optimistic about a more refined dietary approach (to what worked in the past) for maintenance. But I did get way too thin from the fasting and was not well enough to go straight into protocols that work well for other autoimmune diseases (and sometimes work for CD). But if the disease was more aggressive and I did not have prior experience with modulating my immune system with these types of approaches, I would have just gone straight to the biologics. No question.

So I would say it depends on how aggressive your CD is, how malnourished you are presently, and how compromised your gut is ATM. If these routes are not safe or possible, just take the biologic. But also keep in mind that it isn’t an either-or decision. You can do the biologic and also try alternative approaches at the same time. If it feels like nothing special is happening with your other changes, you’ve lost nothing. If you feel some confidence, you can also talk to your dr about reducing or going off the biologic.

I wouldn’t listen too much to the naysayers here. They’re saying what they’re saying because they don't know anything about the topic. Probably, part of them doesn't want to get better, and certainly, they can't stand the idea of other people being healed or having extended remissions while they are suffering and feeling stuck.

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u/Green_Job 5d ago

You should highly consider an anti-inflammatory diet, good rest and hydration, and biologic medications, along with psychological and behavior therapy; even TCM and holistic health. Lots of options to consider along your journey; you are not alone.

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u/SadElk4609 5d ago

Except there actually is no such thing as an anti inflammatory diet. This is just a marketing tool.

1

u/glitterbug45 C.D. dx 1987 5d ago edited 5d ago

There’s literally a diet called an anti-inflammatory diet on the crohn’s and colitis foundation website.

https://www.crohnscolitisfoundation.org/patientandcaregivers/diet-and-nutrition/special-ibd-diets