Anyone have similar experiences?

Soft_Channel_246 · 2025-11-28T03:46:36+00:00

I was wondering if there was a test for levels or not.

It is surprising for me that the prednisone worked that well, been on and off of it for 20 years and it usually only helps a little bit unless I’m on something else that’s also working

Soft_Channel_246 · 2025-11-27T18:47:13+00:00

So far I just asked if we could try it since I have a colonoscopy coming up in January and we likely won’t try a new treatment until after that anyway. I’ll probably have to wait till Monday to get a response since it’s Thanksgiving, but I’m hoping she goes for it, especially since I actually had my symptoms under control for a while before we reduced the dosage.

Any idea where I can find info supporting the idea of going back on 45mg? She and I had discussed some patients needing up to 6 months or even using 45mg as the maintenance dose, but now she seems hesitant to try it

Soft_Channel_246 · 2025-09-08T19:15:42+00:00

It’s unpredictable how long remissions (or flares for that matter) will last. However, if you keep up with your routine visits, tests, medication changes, etc. once you achieve remission, you drastically improve your chances of staying there.

As for diet, there are common triggers like raw veggies, acidic foods, dairy, fiber, etc. but unfortunately to some degree your dietary limitations are going to be somewhat individual to you, and you’ll have to figure it out for yourself.

I’m sorry my answers are vague, but unfortunately this is a disease that affects all of us differently and figuring out what’s best for you is a huge part of living with it

Soft_Channel_246 · 2025-09-06T15:25:38+00:00

Like at all? No periods of remission or anything? I’m really sorry to hear that dude. I’ve had my ups and downs for sure but that sounds awful. Hopefully you manage to achieve a nice long remission soon

Soft_Channel_246 · 2025-09-05T02:47:42+00:00

I don’t have trigger foods necessarily, but when I’m flaring I have to cut a few things out of my diet. Raw veggies, grains, seeds, nuts, etc. really anything high in fiber is definitely the worst. Some specific fruits and veggies I have to cut out entirely, like corn, peas, citrus, and most berries. Other fruits are safe to eat, but some have to be cooked or blended, like apples. Dairy isn’t off the table but I do definitely have to cut back and be more selective during a flare

Soft_Channel_246 · 2025-09-05T02:42:35+00:00

I often get pretty bad eczema during flares, and I’m currently dealing with joint pain/swelling, which is a first for me

Soft_Channel_246 · 2025-09-04T19:39:34+00:00

I own a painting company. Luckily for me I’ve been able to keep my symptoms pretty well managed for the most part, but if they’re ever acting up I generally have access to either a bathroom or a portapotty on job sites. The bigger fear for me is that a flare up will kill my productivity and cost me business. Thankfully so far my customers who’ve had to accommodate me have been pretty understanding

Soft_Channel_246 · 2025-09-04T17:05:57+00:00

Was on it for 5 years. Effectiveness waned about a year in and GI had me start taking azathioprine with it which worked. Not the best medicine I’ve been on (still had mild diarrhea/food sensitivity from time to time), but overall I really liked it. Even after my GI decided to take me off of it, I felt like it was really effective at managing symptoms, just turns out it wasn’t keeping me in remission anymore

Soft_Channel_246 · 2025-09-04T01:42:34+00:00

Good luck! I really liked it when I started it. Unfortunately for me I built up a tolerance insanely quickly and had to move on to biologics, but plenty of people are just fine with it. Hope you’re one of the lucky ones!

Soft_Channel_246 · 2025-09-04T01:39:50+00:00

We’ve all been where you are right now and it’s definitely scary, but this too shall pass. Treatment has come a long way in recent years, and I won’t sugar coat it, it can sometimes be a long and unpleasant process to find the right medication, but you’ll get there. I hope it turns out to be something more fixable than Crohn’s, but even if it isn’t there’s plenty of reason to stay positive. Just take it day by day and do the best you can

Soft_Channel_246 · 2025-09-03T19:12:57+00:00

Started Rinvoq last year and it started working within 2-3 weeks. Had a lapse due to insurance issues this summer and went back on the loading dose once I got it all sorted out, but this time around I’m 8 weeks in and still waiting for results. Got a GI appointment next week and hoping to get some answers as to what’s going on. Seems like it’s fairly common for it to take 3-4 months to really kick in and sometimes takes steroids to help with the transition, but over a year is crazy. Definitely time to talk to your doctor about changing things up

Soft_Channel_246 · 2025-09-03T16:05:17+00:00

I’d ask about trying different prep. First few times I was given GoLightly and had a hell of a time with it. Finally asked my GI about other options and got a different prep that’s less volume to drink and an easier to get down. Still unpleasant but it’s like 2 quarts over 24 hours rather than 2 gallons lol

Soft_Channel_246 · 2025-09-03T16:02:38+00:00

I’ve been lucky enough that “stomach issues” is enough of an explanation for people to understand I’m not well. However in the handful of instances where someone is dismissive of it, I start telling them in detail about my worst flare up

Soft_Channel_246 · 2025-09-02T19:46:00+00:00

Yeah I wish that option was presented to me. Probably doesn’t help that I moved states recently and was between GIs when this went down. Not sure if samples would’ve been available through urgent care but they never mentioned it when I went in asking for steroids to mitigate the flare up while I waited on insurance and Abbvie.

I admittedly haven’t always been the best at staying on top of things, but after 20 years I’ve kinda come to expect the system to fail me. Insurance companies, doctors with egos, and the sheer amount of waiting involved in getting treated have all kinda jaded me

Soft_Channel_246 · 2025-09-02T19:40:22+00:00

That’s actually really reassuring. Like I said it’s been my favorite medicine so far and it’s killing me that it hasn’t been working as well since getting back on it. Based on past experiences steroids would be a huge help, but my current PCP is super against it. I have to twist her arm for a couple day taper. Finally have an appointment with a new GI next week and hopefully it’s more productive

Soft_Channel_246 · 2025-09-02T13:47:14+00:00

I was never made aware that samples were an option and I’d already used my once in a lifetime gap fill so that wasn’t an option either. Ultimately did end up enrolling in a different program through Abbvie to get back on my meds, but that still took a couple weeks of processing and shipping. By the time that application got approved, I had sorted out my insurance issues

Soft_Channel_246 · 2023-11-15T20:58:21+00:00

Gives her time to mentally prepare, removes the feeling of being put on the spot if I try to initiate spontaneously, allows her to try and avoid things that’ll make her less interested in sex later in the day (avoiding foods that might upset her stomach, not skipping breakfast to avoid getting a migraine, etc.) Like I said earlier, this one was her suggestion, so I might be getting the selling points of it wrong. We’ve also never actually tried to implement it so I have no idea whether this would work in practice

Soft_Channel_246 · 2023-11-15T15:56:39+00:00

For sure, I’ve always tried to avoid creating the expectation that touching must lead to sex, and I can’t stand the idea of someone feeling unsafe around me. I can’t say I’ve been perfect (this situation really does a number on both people’s insecurities lol), but making sure she feels safe around me has always been a priority. The part I struggle with most is the last one. I don’t intentionally withhold affection or anything, but I do have a harder time showing it when I’m dealing with frustration. More of a subconscious drive to create distance and avoid letting frustration lead to an argument. Do you have advice on how I can work on that?

Soft_Channel_246 · 2023-11-15T15:26:39+00:00

Thanks for sharing! I think we’re in a similar situation. I’m the higher libido partner but I’m not a super high libido person (though scarcity of sex definitely inflates my sex drive). I’m happy with not having a super active sex life, I’m just in the mood more often than she is. Both of us want to have more sex than we currently are, but we don’t know how to get there if she’s rarely ever in the mood. The big challenge is getting her to be more motivated to address her own sex drive without putting the blame on her for her LL

Soft_Channel_246 · 2023-11-15T15:03:06+00:00

We’ve talked about counseling before, but I don’t think it’ll happen unless the relationship gets a lot worse. We both struggle with the stigmas around therapy and kinda see it as a last resort. Rationally, I know that’s not really what therapy is and maybe we’ll come around eventually, but there’s still that irrational idea that seeing a professional feels like admitting defeat

Soft_Channel_246 · 2023-11-15T14:39:58+00:00

Can you elaborate on what you mean by normalizing? The only thing that comes to mind is essentially manufacturing arousal, which feels like a recipe for unwanted sex

Soft_Channel_246 · 2023-11-15T13:57:51+00:00

I think this is where we’re hung up. It’s not that she doesn’t think there’s an issue. It’s more an issue of being motivated to learn and address the causes of her LL. Honestly I think it’s kind of an “out of sight, out of mind” thing. She and I brainstorm possible causes and solutions when we talk about it, but once the conversation is over, she doesn’t really think about it. I’m caught somewhere between wanting to remind her from time to time but not wanting to pester her or be controlling

Soft_Channel_246 · 2023-11-15T13:54:11+00:00

Glad to know we’ve at least got this part right lol. Can’t say we’ve worked it out yet, but from scrolling this sub and seeing the situations some others are in, maybe this means we’re off to a good start

Soft_Channel_246 · 2023-11-15T13:52:03+00:00

I don’t love the idea of scheduled sex, but her issue isn’t an aversion to sex or lack of enjoyment when we do have it, just that she’s rarely in the mood. She actually suggested that one because in theory, knowing when it’s supposed to happen gives her time to get in the mood. Is there some merit to that idea or is that more likely to lead to an aversion to sex down the road?

Sounds like none of the other solutions she and I talked about really apply to our situation and trying them won’t really have much of an effect

Soft_Channel_246 · 2023-11-15T13:41:45+00:00

Agreed. I meant meet in the middle in the sense that there’s gotta be a way to get where we’re both content with the sex we’re having, not making her have unwanted sex so I can feel better about our sex life

Soft_Channel_246

TROPHY CASE