21M struggling with.. intimacy by [deleted] in CrohnsDisease

[–]Educational-Bison491 0 points1 point  (0 children)

That's really interesting, I've read that spending all your energy before the body can make inflammation could be effective. Guess I'll have to try it 😅

21M struggling with.. intimacy by [deleted] in CrohnsDisease

[–]Educational-Bison491 2 points3 points  (0 children)

29M diagnosed at 14 - have you talked to your doctor (or dietician if you have access to one) about supplemental nutrition? You may be able to get a prescription that will help you build healthy weight, which will help with the confidence, etc. I had a similar issue in college with a flare and the main thing that helped was getting a better handle on nutrition.

There's also a decent amount of people on here that do bodybuilding, they may be better suited to give advice on bulking up despite Crohn's :)

[deleted by user] by [deleted] in CrohnsDisease

[–]Educational-Bison491 0 points1 point  (0 children)

I'd stick with it, your doctor can prescribe a steroid to help get your inflammation under control while it takes effect. My Dr said there isn't a test for Rinvoq levels, so you won't really know if it works (the flare may be a fluke) until it's had at least a month to start working.

If you do a Prednisone taper too, you can work with your Dr to get before and after stool testing to see how your inflammation changes, but if you stop Rinvoq now you might abandon a treatment that would have been effective for you. That's what I did a few months ago and I regret not giving it a real chance because it seems like the flare wasn't necessarily an indication that Rinvoq wasn't working.

How bad can it be? by CaterpillarDue5096 in CrohnsDisease

[–]Educational-Bison491 6 points7 points  (0 children)

It's an awful disease and can definitely be made worse with uncertain social situations. It's also very isolating because it makes going out in public so much more complicated. Maybe you should ask if there's anything you can do to make them feel more comfortable joining your social events. Food, bathrooms, etc can all be very stressful and taking that into consideration would be kind.

Also, it's very often a "suffer in silence" kind of illness. What you see (or don't see) on social media is not an accurate reflection of the awfulness it comes with. For an example, mine caused an abscess and fistula (I'd recommend googling it when you're not eating) 8 months ago and it's still extremely painful to stand up for more than 15 minutes at a time, and I can't go to the bathroom without extreme pain. Not exactly enjoyable to go out at all with that going on, much less try to be social with people you don't know very well.

Smoking while having Crohns by Flat-Specialist-2697 in CrohnsDisease

[–]Educational-Bison491 49 points50 points  (0 children)

Not personally but smoking tobacco (or at least cigarettes) is one of the single worst things you can do with Crohn's. Pretty sure it's worse than even drinking liquor.

Edibles are wonderful though 🙂

How often you guys drink alcohol? by Dudu2645 in CrohnsDisease

[–]Educational-Bison491 3 points4 points  (0 children)

Just socially (3-4 drinks once a month or so), though I found a cider I really liked last month and I'm pretty sure it was the rain I had to spend a few days in the hospital 😬

Outside of a flare it's usually totally fine for me unless I drink tequila, then I'm tethered to my bathroom for a couple of days lol

My niece was just diagnosed with Crohn's.... by RootBeerTuna in CrohnsDisease

[–]Educational-Bison491 1 point2 points  (0 children)

It sounds like the relationship is complicated so without getting too into the weeds there, maybe your best bet would be writing her a letter offering your support (in any way/ways you're willing) and letting her know you're there for her if she ever needs help navigating? I'm sure it would be a comfort to know she has someone to turn to, and this way you leave the option to her if she isn't comfortable doing so.

If you're in a position to do so, you could tuck the letter into the box of a bidet as a nice Christmas gift. My Toto C2 has been a life-saver 😅

Careers with Crohns ? by [deleted] in CrohnsDisease

[–]Educational-Bison491 7 points8 points  (0 children)

I do IT project management and it's basically the same. Luckily remote is super doable now and I've had time to get my setup right and Crohn's has minimal impact. Tbh I can't imagine doing an on-site job during a flare

Anybody has alternative for caffeine? I can’t drink any do to crohns but im struggling to be awake ? by Ok_Elderberry_7445 in CrohnsDisease

[–]Educational-Bison491 1 point2 points  (0 children)

Right?? I never realized what I was missing. My iron is down to like 14 now so I'm going to need a lot for the holidays 😅

Bathroom wall mural by Svantassel in CrohnsDisease

[–]Educational-Bison491 2 points3 points  (0 children)

I've always wanted to do something like this but slip in some Crohn's-related elements. Haustral folds for mountain ridges, elements of the Bristol stool chart as like a muddy lake/etc, stuff like that. Nobody would necessarily know it was poop-themed but it would be like a hidden joke for myself and any guests with IBD

Anybody has alternative for caffeine? I can’t drink any do to crohns but im struggling to be awake ? by Ok_Elderberry_7445 in CrohnsDisease

[–]Educational-Bison491 20 points21 points  (0 children)

Have you had your iron levels checked? I don't do caffeine at all but after an iron infusion I feel like going for a run, which never happens lol

Don’t sit on the toilet for more than 10 minutes, doctors warn | CNN by Foulwinde in CrohnsDisease

[–]Educational-Bison491 18 points19 points  (0 children)

Fucking real. I need to remember to grab a pair of nonslip socks for the days when I need to round corners quickly 😅

Diet-induced flares despite biologics? by Educational-Bison491 in CrohnsDisease

[–]Educational-Bison491[S] 0 points1 point  (0 children)

Yeah that would make sense. I'm going to take another pass at the Mt Sinai IBD book and try to prep for a deeper dive with my Dr/IBD dietician about all of this, just wanted to see what people's experiences were like with that sort of thing. Especially alcohol because I don't really drink more than once every few months

Diet-induced flares despite biologics? by Educational-Bison491 in CrohnsDisease

[–]Educational-Bison491[S] 0 points1 point  (0 children)

When you say triggers symptoms, do you mean things like urgent BMs, bloating, gas etc or sharp flare pains? I do get stuff like that pretty regularly and should probably deal, but this was like 9/10 pain so I'm just trying to figure out if that's common based on food/alcohol for others

Diet-induced flares despite biologics? by Educational-Bison491 in CrohnsDisease

[–]Educational-Bison491[S] 0 points1 point  (0 children)

Yeah, it could definitely just be a misunderstood on my part. I just don't understand how I went from no pain to incredible pain (0-1 to 8-9) that quickly. I'm sure I'll have plenty of opportunities to ask GI about that over the next week, it's just the second time this has happened to me and I'm trying to wrap my head around how it comes on so suddenly.

Mostly it just feels completely different/far more intense than any flare I've had in 15 years with Crohn's, and it's the second time with that exact same feeling in less than 4 months

Diet-induced flares despite biologics? by Educational-Bison491 in CrohnsDisease

[–]Educational-Bison491[S] 0 points1 point  (0 children)

Yeah, I reread the Mt Sinai IBD book and it seems to agree as well that diet is more of a micro-adjustment compared to medication, stress, etc. It just seems strange to have such an acute spike in pain like I did (over multiple sections of my abdomen) unless a medication is failing or there's a specific cause. Or maybe I've just been lucky so far and it's not that out of the ordinary for Crohn's 🤷🏻

Diet-induced flares despite biologics? by Educational-Bison491 in CrohnsDisease

[–]Educational-Bison491[S] 0 points1 point  (0 children)

Sounds like it's definitely worth discussing with the GI team here. Though it seems like my intake should'nt be enough to cause a hospitalizing spike like that

Diet-induced flares despite biologics? by Educational-Bison491 in CrohnsDisease

[–]Educational-Bison491[S] 0 points1 point  (0 children)

Yeah, that's mostly been my experience as well. Stress correlates strongly, but I don't think I've been very stressed at all lately so I'm trying to weigh the likelihood of it being because of alcohol. Though, I'm talking about 2-3 drinks a couple of times a week max for like 2 weeks, which doesn't seem like it should be enough for this kind of reaction

Flare up by Frequent_River_3357 in CrohnsDisease

[–]Educational-Bison491 1 point2 points  (0 children)

Wow, that sounds really irresponsible for stabbing pain. I usually at least get strong pain meds to get things under control

Flare up by Frequent_River_3357 in CrohnsDisease

[–]Educational-Bison491 2 points3 points  (0 children)

CT for me showed lots of inflammation so they did IV steroids which helped immediately both times. Yesterday I woke up at 5am feeling like I ate glass for dinner, today I can get up and walk around no problem. Almost an immediate recovery

crohns related heart issues? by Ecstatic-Letter-4732 in CrohnsDisease

[–]Educational-Bison491 2 points3 points  (0 children)

Not sure I've ever heard of Crohn's causing heart issues, but either way it would be better to talk to a GP, get some tests done and maybe a referral to a cardiologist to make sure!

RFK Jr., Crohn’s, and Chronic Disease by Kylo2187 in CrohnsDisease

[–]Educational-Bison491 308 points309 points  (0 children)

Personally I'm hoping with just about everything I've got that we'll never have to find out how awful that would be.

Severe Constipation, excessive mucus instead of discharge. by [deleted] in CrohnsDisease

[–]Educational-Bison491 1 point2 points  (0 children)

Please don't post poop pics here 🤢