r/CrohnsDisease

Hi. I've been in remission for 4 years now -since my last bowel resection surgery- and i've been so good until last sunday.

After dinner i started having insanely painful abdominal aches and i struggled pooping.

Then i realized i took ibuprofen and that might have been the cause of this sudden flare up.

I'm so fucking dumb because the day before, i woke up with fever and migraine and usually i don't take medication that are not for my Crohn,if not necessarily.

That day i didn't want to feel like shit. The fever lasted like half a day and never came back. I took a preventive pill of Ibuprofen to avoid fever in the night and sleep well, just in case.

the day after i felt well until dinner, as i mentioned in the beginning.

I also read the paper that comes with the pills package and underestimated the fact that I should've contacted the GI before taking it, i'm fucking stupid.

Now I contacted my GI and i'm on some medication that i have to do for a week to see if it solves out.

I can't believe i fucked up my gut for negligence, i Hope it's nothing i have to deal for months that will worsen up, because i read some people that did the same thing and said they had problems for months. That's just fucking insane, this experience humbled me so much and thought me that even if i'm in remission for years i still have a fucking disease. Wow

I hope this doesn’t sound insane? But does anyone ever feel like they have like- a water balloon in their abdomen? It’s up by my liver / gallbladder area. It sometimes hurts, sometimes just feels like pressure? But the best way I can describe it, feels like someone put like a water balloon in my side and my body knows it’s not supposed to be there so it feels weird….

I hope this makes sense….

I went to the ER twice for the pain, which is how they suspected my Crohns from the CT scan, but everything else looked good??

Hey guys:)

I got diagnosed about a month ago now with crohns disease. My GI told me I should cut out any dairy and gluten as to not worsen my condition. Is this a general advice? What are y'all eating? I am sick of eating the same thing every day. Also I have not yet noticed that something with gluten or dairy has made me more pain or worsened anything. Also if anyone knows, is this just during active flare up or am I never "allowed" to eat gluten and dairy again? (i don't completly avoid gluten and diary, but most of my meals are without)

I got a partial diagnosis a few weeks ago at my colonoscopy (it's at least colitis, but they want to do an MRI because there are signs of crohn's on the part of the small intestant they could see) and was started on Asacol right away.

I noticed a gradual change, and after a week the nausea was much better, along with my stool starting to be more solids than fluids.

BUT the itches... I 've scratched my lower legs raw in my sleep and whenever they got warm (like under the covers when I sleep, or in the shower) it felt like fireants under my skin.

So they pulled it Wednesday and put me on some cortisone based something (don't remember the name) and I took the first pill this morgning. I feel no effects yet, but I've been nauseated yesterday and today, and been in bad pains, that only ease with the passing of "hard farts". Weird word but the feel almost painful to pass, although they are only air, no residue.

I feel awful. I don't know if it's because if I had two weeks of relative ease and have just forgotten how it was before, or maybe it's just my body having trainig ache from having to work to expell stool for the first time in almost a decade.

I know others have it worse. I just want to pity myself a little.

I’m not sure if anyone else has experienced this but… I started Tremfya at the end of last May and at most two weeks after, I started experiencing intense pain in my lower back and sides. I’ve had MRIs, x-rays, ultrasounds. Crohn’s specialist said it isn’t my Crohn’s, recc’d I go to my PCP.

My PCP was on maternity leave so I saw someone else. He referred me elsewhere after I took anti-inflammatories and prednisnone (predinosone my beloathed). Did physical therapy for two and a half months and that didn’t help plus my insurance refused to give me more visits. Then pain management basically gave up on me. Then I went to rheumatology and insurance refused to approve an MRI because I had an approval from

my pre-colonoscopy MRI I let expire. Somehow that was for the same area??? Y’all, is your ileum in your pelvis??

Just got the news after my rheumatologist asked the radiologist to look into an MRI I did last July. No inflammation in my hip bones. I could’ve told her that. She then said “Oh I did some research and Tremfya can cause joint pain, go talk to your GI. Bye!” No follow up, no next steps for rheuma. I have a telemed with my Crohn’s specialist next Tuesday, which turns out she can do! I’ve been going to the city to see her for A YEAR and she can do telemeds!

All this to say, I’ve searched here and seen that joint pain is common with Crohn’s. I can’t even tell if this is specifically joint pain as I have a tough time observing my body and identifying problem spots. After my CD symptoms popped up, I would’ve just went on with my life if it wasn’t for my mom saying I needed to see a gastro. That’s a whole other, very embarrassing story.

It’s been nearly a year, the pain has spread. Everyday, something below my neck hurts and usually multiple spots at that. My knees, some part of my torso, a shoulder, the bottoms of my feet, etc.. I’m 25, so it’s really scary and demoralizing. No medication has worked and it feels like all the doctors I’ve seen are going to give up on me. If it was the Tremfya all along… well, why didn’t the person who prescribed it clock that? I went to her first after all.

Just anything helps, a common experience, advice. I’d appreciate it :)

Been doubled over twice tonight in pain before passing gas, i'd even go as far as saying it was like labour pain. It hit me in the lower abdomen and I had to just curl over and breathe through it before I could let out a lil fart. Has anyone had a similar experience? Just another fun thing we have to deal with. Sigh

Who has had an ileostomy?

Mine is looming.

I am still unsure.

At the moment my major symptoms are exhaustion and low weight, and depression.

I've just looked into the reality of the operation and it's aftermath, and I don't know if I am going to be worse off if I have the surgery.

I am not using any medication.

I can eat some foods but am mostly on a Modulen only diet currently.

The surgeon is hoping for a successful laparoscopic operation, but as we know this could change.

I am starting to feel like the decision is out of time and out of my hands, but I'm not sure I can go through it.

I don't feel like I have enough indepence or support available at home.

I am in UK and with NHS.

I doubt asking this is going to help me, but I really don't know what to do.

sometimes FedEx in my town will decide I don’t really need my package delivered in the morning and will try to wait until the evening, after 8pm, to get into a gated apartment complex to drop off my medications.

this happened yesterday, when it was first scheduled to be delivered at 9am, then 2pm, then 5pm, then 8pm. and they were unable to drop off my meds “due to local restrictions”. it wouldn’t have been restricted if you had come before 7pm! there weren’t any restrictions around if they had come at a normal hour (gates close at 7). they could’ve also called me, they have my number, but chose not to.

this means that they basically just destroyed a shipment of Skyrizi as yesterday it was like 90F here, and didn’t get below 65 in the evening. so now I have to call the specialty pharmacy, AGAIN, to get another shipment. but I can only call them after I receive the ruined shipment.

that’s like a $30,000 medication just worth nothing now. 🙄

I have been struggling with stomach pains all my life, and just last week was I diagnosed with Crohn’s Disease after a colonoscopy.

I was handed two brochures about Crohn’s, but have not been able to debrief with any doctor or person that has it/knows of it yet. Whenever I tell people about it they have never heard about it, and I am struggling with even explaining what it is and how it affects me. I have been feeling a bit lost and alone, and through I might reach out here:)

I know that question is a bit broad, but I don’t know where to start to look into it all. Gut health, diet, medication, flare patterns, lifestyle, medical follow up etc.

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So far I have been on two checkups and one colonoscopy, and I am going to have an ultrasound on my small intestine. Results so far are:

High calprotectin value

A fistula (might need surgery? I don’t know)

Inflammation in the lower part of my small intestine and upper part of my large intestine

I know not all of us have this particular issue, but I’ve been struggling to find a way to make light of it. I have lost a lot of weight since being diagnosed. Needless to say, people notice. My issue comes when someone notices and says something like “you look good! What did you do to lose weight?” It happened twice today and it keeps happening. I just say “i wasn’t trying but thank you.” But when it gets annoying to me I just say “i got sick”. But then there are more questions. If these people were strangers it wouldn’t matter to me but I see these people all the time. And of course they’re curious, most of them care about me. But like… I don’t want to answer questions about this disease. People hear me say it and they act shocked. They act confused. They don’t believe me and will argue because they “know someone with Crohn’s and they are bedridden or have a pouch” etc. They suggest treatments and remedies that I don’t care to hear about. It’s annoying and sometimes downright insulting. How do you all deal with this kind of thing? Does anyone have any funny quips to say back to these people so that I can address it and move on with my day instead of playing 21 questions?

Two questions:

Your weight gaining top hack?

And do you relate?

.

Have any of you been able to complete a apprenticeship or just in general able to work construction or truck driving

Has anyone here had experience with the copper IUD?

I have had it for two years now and my periods are painful and heavy (the gyno told me they might get easier but they haven’t) and I get random stabbing pains outside of my period. Sometimes I’ll bleed randomly too.

I’m wondering if this is a build up of inflammation in my body/uterus.

Has anyone here experienced similar issues with the copper IUD?

I feel like I haven’t ever seen someone talk about this before: what do you all use/do when you ate a bad meal, and you’ve got the horrible stomach cramps and pain, but it’s like.. not moving through your system? just sitting there like a rock in the upper part of your stomach burning and making you nauseous?

Excess amounts of water? Electrolytes? Try to flush it out with miralax?? Fiber??? I’m so unbelievably uncomfortable right now, no position helps and I feel halfway like I‘m having a false alarm and half like I’m gonna throw up. How do you get this stuff out of your body?!

Hey all. I wanted to ask if anyone has fatty liver as a consequence of crohns. I just got my results back from my MRE, and I have fatty liver. For the first time. My liver values were all normal, Im 22 and i avoid fatty foods anyway because of this disease. I am really confused. I know fatty liver is more likely with crohns but i didnt expect to actually have it. Does anyone else have it? What is your experience

im an eighteen year old female and i was diagnosed with crohns disease a few days ago— it started only with severe constipation and it rapidly got worse this year, with horrible stomach pains and diarrhoea daily, rapid weight loss, and im constantly exhausted and in pain SOMEWHERE whether its my mouth, stomach, or butt

not to mention im in the middle of my college exams; so my specialist said we could wait until after to start my medication, it feels like my life was just finally beginning to start and i was just hit with a cannon

anyone have any advice?? i know its not a life ender, but i just miss being normal. nobody else in my life understands how much its affected me and i dont know how to navigate having this chronic illness at this point in my life

appreciate ANY advice, mental or physical care (ive neglected both of mine) any tips on how to look after yourself, or even your own experiences!!

i just want to hear some words from people who actually understand the struggle

I’m pretty sure my roommate is currently going through a crohns flare, how do I help them?

They have 2 dogs (a sr and a puppy), and have been setting alarms for every 4 hours to take them outside. Normally they’re really attentive with them, and spend an hour a day playing with them, but the past week they’ve been only playing with the dogs for about 10-20 minutes when they get home. I’ll hear their alarm, and it sounds like a drunk toddler making their way downstairs. I offer to take the dogs out, but they ‘don’t want to be a bother’, even though I assured they wouldn’t be. I’d just take them out, but the dogs follow them around like their shadow. It’s been worse the past week, I think the dogs can also tell my roommate is sick.

They haven’t been eating much of anything because it hurts their stomach. I tried buying their fav smoothie from down the road, mixed berry with protein powder, but they just half smiled at me, took a sip, and quietly waited for me to leave. I don’t think they drank more than that sip :T

They work 10 hour night shifts 4-6 days a week, and they’re still going to work, even though they are clearly in a lot of pain. They tried calling out to go to thr ER, but their boss threatened to fire them if they did so, doctors excuse or not. They seem so exhausted. They’re usually the one who sweeps/mops, vacuum/ shampoos the carpets, but they haven’t done that in two weeks now (they’re very particular about how it gets done. Last time they were sick like this and heard me start their unofficial chores, they got up and took over, I’m trying to avoid a repeat of that. Dw I at the very least swept)

The amount of Tylenol they’ve been consuming has become alarming, something about not being able to have ibuprofen? I’ve been keeping their cold packs cycled, so they’ve always got a fresh, cold one. They said in the past they don’t help pain, but the cold felt nice.

What can I do to help?? I take care of their dogs while they’re at work, but I can’t really do that when they’re home bc they sleep with them, and my roommate heavily values their privacy. If the dogs whine at their door I let them out, but that’s it. I’d do their unofficial chores but if the catch me doing them they’ll get up and do them instead (it’s a whole thing, I think they have OCD??). If they think I’m trying to help then they get weirdly stubborn about their health and taking care of themselves as to prove some sort of point to themself

I just got my results back from my MRE and I am shocked to say the least. I went in for a suspected flare but it wasn’t as bad as any other flare before. I just went in because it “may” be a flare. My MRE showed active inflammation throughout my whole jejunum. Average width of the jejunum wall is 7mm. I also have my jejunum adhered to each in other in a few places. My terminal ileum was patchy before. Now it shows complete. Also fatty liver along with bile duct sludge.

I only had active disease in terminal ileum and a few places on my colon. And the last endoscopy showed a tiny place where I had nonspecific chronic duodenitis but it wasn’t anything to worry about. I have been diagnosed about 5 years ago. My last MRE was last year. I have been alright since 2 years ago. My symptoms only came back a few weeks ago. I did not expect anything like this when I went in. I have a colonoscopy next month.

So what now?! I wasnt supposed to see the doc until my colonoscopy. I think the doc also did not expect anything like this. But this had me worried a lot. Should I go in? Did anyone have this happen? I know jejunal crohns is harder to treat. What was it like for you? Am I overthinking this to be more severe than it is?

i'm not sure if i'm in a flare or what but for the past couple of weeks i've been feeling pretty bad. i'm getting repeat labs soon but just looking at some food, smelling it or thinking of eating it makes me want to throw up.

do you guys feel like that too? i'm hungry but i can't get over the thoughts & feelings of trying to eat.

The blisters were so bad I had a hard time walking.

Had a biopsy done because some autoimmune skin condition was suspected but my derm who is a professor was stumped. Every doctors' guess was wrong

Turned out to be a crazy tinea fungal infection that did not look like a fungal infection. Topical anti-fungal cream seems to have cured it.

I have taken my 2nd induction dose last week and so far no recurrence.