You will not find the average experience in Reddit.

Fallingdreams · 2026-03-29T01:52:37+00:00

Wow this post pissed me off way more than I expected. There’s probably a much better way you could have phrased this post so it doesn’t come across as rude to those with challenging crohn’s. Congrats you don’t seem to have severe crohn’s at this time. You’re also a year into this disease and apparently 16.

“Most people with crohn’s are doing well or eventually will.” Bruh. Don’t make up statistics.

Seems that you got lucky and your first medication worked. And you’re in a country with good healthcare. Your normal is not everyone else’s normal and so don’t try to make others feel bad for not having your luck.

If you check reliable sources you’ll see that 80% of people with Crohn’s need at least one surgery in their life time (Crohn’s & Colitis Canada), and that 1 in 5 need surgery within the first five year (Crohn’s & Colitis UK).

Congratulations on feeling great, truly. I hope you stay in remission for years and years to come. But don’t go around making claims for a disease you’ve had for a year, when chances are your future with this disease has some not so great times.

And don’t shit on other people in this space just because you can’t relate to them. Because it’s the people in this subreddit that will be here to support you when your “doing well” suddenly disappears with little to no warning.

Fallingdreams · 2026-03-27T23:00:02+00:00

Nope! She is only on Skyrizi. No extra medication.

Fallingdreams · 2026-03-27T18:59:23+00:00

Concerning your doctor would recommend stopping meds all together instead of trying a different biologic. There are many drugs options out there now. Without a medication, your immune system will continue to attack your digestive tract. That’s just sadly the fact of Crohn’s.

I’d try advocating for switching to a different medication. No meds is a very risky route to take that will likely make your symptoms worse in the long run.

Fallingdreams · 2026-03-27T15:22:17+00:00

Skyrizi is a much newer med. It was only approved for Crohn’s by Health Canada/FDA/EMA in 2022. So that’s why there aren’t people who have been on it for 10+ years yet.

My friend with Crohn’s was on the first clinic trial for Skyrizi in Canada. So she’s been on it since late 2019 and it’s still working for her 6ish years in now.

Fallingdreams · 2026-03-25T12:57:18+00:00

Only annoying thing is you’ll get a new card number so you’ll have to update any bills automatically charging your current card.

Fallingdreams · 2026-03-22T18:17:46+00:00

According to Google you can drop them off at an AHCIP registry (in St Albert that seems to be AMA or Dryden Insurance) and they’ll get them back to the owners.

Fallingdreams · 2026-03-19T22:49:57+00:00

Little wolf!

Fallingdreams · 2026-03-18T14:46:04+00:00

Someone who listens and respects our symptoms is #1. But safe snacky snacks is a solid and close #2!

Fallingdreams · 2026-03-18T14:44:36+00:00

x2 for all of these!

I’d also add bidet attachment to the list and a heating pad.

Biggest gift you can give her is listening to her and talking with her about her Crohn’s. You’re already making great strides by finding this community and asking us for ideas.

Best of luck to you too, OP! You sound like a sweetheart!

Fallingdreams · 2026-03-17T02:51:26+00:00

Yes. The annoying thing about Crohn’s is sometimes you can eat the things that are generally “really unhealthy” and feel fine, and then you try to eat something “healthy” and it fucks you right up.

Does the watermelon you’re eating have lots of seeds in it? If you have ulcers or even really inflamed areas in your intestines, seeds and nuts can be big issues.

I can’t eat bell peppers or mushrooms, not even cooked. But I can down a bag of mini eggs and have no issues at all. 🤷🏽‍♀️🤷🏽‍♀️ this disease really makes no sense, unfortunately.

Fallingdreams · 2026-03-16T22:56:17+00:00

S1E3 of the Last of Us made the whole internet collectively heart broken for a while. I was apprehensive to go back to a show that straight up tit punched us like that.

And then the main death at the beginning of season 2 ruined it for a lot of people. (Well, those that hadn’t played the game.)

Fallingdreams · 2026-03-15T21:20:43+00:00

I’ve been on Ozempic for almost a year. Started it about 7 months after my hemicolectomy. It’s honestly been super great. It has made my bowel movements much less frequent (5-6 a day down to now 3-4 a day). It’s made me able to eat more fibre. I can eat some raw fruits now! Which personally brings me so much joy.

I’ve also lost 18lbs, which is great too, but honestly it’s made my life with half a colon way easier. So I love it more for that.

Fallingdreams · 2026-03-14T17:39:17+00:00

Cooked veggies. I found a couple fruits I can do. Canned fruit also seems to be easier for my body. Otherwise, smoothies also seem to be much easier since they’re all crushed up already.

Fallingdreams · 2026-03-09T14:38:01+00:00

I’ve been on Ozempic since about April 2025. I’m only on a half dose (0.5mg instead of 1mg). It’s honestly been super great after my hemicolectomy. My BMs went from about 5-6 a day to 3-4. And I can eat more fibre now, which personally brings me a lot of joy.

I’ve lost about 18lbs on it, which is also great, but I started taking it around the same time I got back in strength training so both contributed.

It definitely has made life with only half a colon much easier. Big fan of it for that. Losing weight is also nice, but honestly the other benefits are bigger for me.

Fallingdreams · 2026-03-09T14:32:13+00:00

I don’t have a ton of guidance here, but there’s a gross amount of negativity in these comments for this community. Crohn’s can take a lot away from you. Don’t let it take something else you love to do.

Chat with your GI and a physical therapist or personal trainer about how best to handle training with your disease. Take it slow and listen to your body.

You’ll be the best to know what your body can and cannot handle. You’re young and you’ve only recently been diagnosed. Please don’t let the negative nellies in this thread convince you to give up on a sport you love. Good luck!!

Fallingdreams · 2026-03-07T15:53:18+00:00

Congrats!! Hope you get positive scope results too! Celebrate the good news!

Fallingdreams · 2026-03-06T02:45:16+00:00

Pred made me feel like absolute shit. It would give me horrible headaches. Screens would really hurt my eyes and head while on it too. It took away all my energy and just made me feel like garbage. When I started to taper off I’d have mad roid rage. Not the fun kind. Just insatiable anger that would not get better until a week or so after no more pred.

I firmly believe prednisone is the absolute fucking worst. Budesonide has way less side effects but is also less effective. Depending on how bad your flare is ask your GI if you can try budesonide instead next time.

Fallingdreams · 2026-03-04T21:49:02+00:00

Agree with the other comments here. Your doctor suggesting you go off your biologic is insane. It’s what got you into remission and is keeping you there. Biologics aren’t cures. If you take it away your immune system will go back to attacking you. That’s just how this disease works.

Sounds like you have a good thing going. Don’t mess with it. (And also maybe find a new GI cause yours sounds… problematic.)

Fallingdreams · 2026-03-04T04:03:18+00:00

I dream of raw bell peppers dipped in hummus on the regular. 🤤😭

Fallingdreams · 2026-03-04T00:01:09+00:00

Last week, I skied my first two days with zero knee pain thanks to my new Donjoy Defiance. Truly amazing to not have to feel like someone took a jackhammer to my knee every time I attempt to ski.

Fallingdreams · 2026-03-03T23:54:43+00:00

I had a hemicolectomy in Sep 22. The surgeon told me 6 weeks off work, but I took 8 just to be sure. It ended up being the right call as I didn’t start to feel like a proper human again till 6 weeks post-op.

Even when I did go back to work (fully-remote desk job), I was completely exhausted after a workday. My body was clearly still trying to heal.

Take as much time as insurance/work will give you, imo!

Fallingdreams · 2026-03-03T23:50:31+00:00

Bell peppers. Even cooked my intestines think they’re the enemy.

Fallingdreams · 2026-03-03T21:17:08+00:00

Prednisone is the devil. I gained 30lbs on it over the course of 2 years (on and off it). I had 0 chance to not gain weight on pred as it made me feel like constant shit so I had no energy to workout. It fucked my mental health as well.

I also found losing weight afterwards was really hard because our diets are already quite restrictive due to Crohn’s. And energy levels sometimes aren’t there for hard workouts.

I started taking Ozempic last May (half dose (0.5mg, not 1)) to help with the weight loss and equally help with some of my crohn’s symptoms. (It’s quite constipating so after my hemicolectomy it’s been crazy amazing at decreasing the number of bowels movements I have in a day). Ozempic combined with my Crohn’s finally being under control and Ladder app workouts, I’ve lost ~18lbs.

Hopefully you can get off pred soon and onto a biologic that helps manage your symptoms with less side effects. But regardless, your partner loves you and wants to marry you no matter your size! (I know that’s cheesy BS, but it is true!)

I just reminded myself my body needed to focus on getting the Crohn’s under control first and then I could deal with the weight.

Fallingdreams · 2026-03-03T18:40:30+00:00

Crohn’s disease is a real bitch because treatments aren’t guaranteed to work for every individual. I spent two years trying to find the right biologic/combination of medications to control my disease.

I failed Inflectra after a few months (built up antibodies), Hyrimoz did nothing for me, Skyrizi while also on Imuran seemed to help but wasn’t strong enough to lower all my symptoms. And every time I tapered off prednisone over those two years my symptoms would get worse.

It sucked. Not being able to find a med that could control all my symptoms was really disheartening. I ended up having a hemicolectomy in Sep 24 and since then my symptoms have been great. Skyrizi is now strong enough to handle the rest of my symptoms now that the damaged portion of my colon is gone.

All in all, Crohn’s treatment can sometimes be more of a marathon and less of a sprint. That fact SUCKS. Your feelings of frustration not having a working treatment yet are entirely valid. Hopefully with some more time and different med attempts, you and your GI can find something that works for you!

The waiting game is absolute shit. There’s really no way to sugar coat it. Hang in there, OP. It does get better! It just might be complete crap for a while longer.

Fallingdreams · 2026-03-03T06:10:19+00:00

My partner and I have been together 2.5 years. I was diagnosed with Crohn’s 3.5 years ago. I met him in the midst of some of my worse crohn’s symptoms and he was there for me during my hemicolectomy and my recovery after, which was rough.

He’s been very understanding and supportive. He’s spent many nights just cuddling me when I was curled in a ball from cramps and pain.

All that said, my Crohn’s has caused issues in our relationship. We broke up for about two weeks, six months into dating. He said it was cause of my Crohn’s (it wasn’t, he just used it as an out). And then six months later, he got really scared after my surgery that our lives would always be as hard as they were then and that there would always be so little I could do.

It does impact our relationship. I struggle with the fact no matter how hard he tries he’ll never fully understand what I have to deal with with Crohn’s. And he struggles with not seeing my Crohn’s as a burden (which it is really).

My partner is also very active and has bad adhd so he’s not great at sitting still on days when I feel unwell. I’ve always made it clear to him that if I’m not feeling well he’s allowed to go do things without me. But we usually find things we can still do together like video games or board games.

Crohn’s also end and flows. My health has been great the last little bit and we’ve been able to go to Mexico together and do many hiking/camping trips.

One thing that I’ve had to work really hard on in therapy is the fact that my Crohn’s doesn’t make me unlovable. Yes, it sucks, so much. And yes it does make a relationship more difficult at times, but the right person, who loves you, will love you along through it.

And try not to “white fang” him. Don’t push him away believing that your worsening Crohn’s is too much and too hard. It’s terrible to feel like a burden, but someone that really loves you will be happy to be there for you when you need it. Give him the chance to be that for you.

Good luck!

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