r/CrohnsDisease

I 24(f) started seeing a guy 25(m). I myself have Lupus and Sjögren's. He has Crohns. He disappears a lot and stops responding at all, when I believe he is having issues. He has not been very open about discussing these problems. I don't draw attention to the stomach growls or when he's constantly going to the bathroom. My family has a history of IBS. I have been around stuff like this a lot. I have no judgement, I don't think it's gross. My question is how do I meet him where he needs me, if he doesn't really talk about it.

I want him to feel safe and comfortable. I want to know what are safe foods, what isn't. I've been researching everything to try to have as much information to adapt to what can help him. I don't want to pressure him or make him feel embarrassed. What can I do? How do I approach this safely without causing him to push away? I know he sleeps a lot and that's fine. I want to make things official, I want to be a team with him through this. Surgeries, embarrassing moments, doctors appointments, if he feels unwell and needs to leave. Any advice will be greatly appreciated.

Hi all,

My daughter is 20 months old and was diagnosed with crohns at a year old, but had been symptomatic since about 2 months old.

No, we don't have a family history of it. Yes, dr's are eating her up because she is a rare case. Yes, she is apart of IBD studies.

Anyways,

We are at a standstill with her care. Entire pediatric GI at the hospital took a vote that they ethically have to postpone infusions.

My daughter is NPO and has a g-tube as form of treatment. This worked for about a month and now we are back to right where we were. She is up AT LEAST 3x a week at night screaming and begging us for help and telling us her belly hurts, she is much like a ragdoll during the day, her face is very pale, her terrible eye bags are coming back, and she feels warm. No fever- just warm. She screams in pain before she goes to the bathroom and there is blood and mucous in her diapers.

These are all classic symptoms we dealt with prior, so nothing terribly alarming. She had an ultrasound last week to check her inflammation and my daughter has a looot of medical trauma and she was hyperventilating, screaming, and kicking. This made it to that the GI dr wasn't able to get great imaging. The GI dr repeatedly told us there was a large red flag spot on her right side of her colon, but the imaging she was able to get did not match what she saw in real time.

All of this was just shrugged off. In addition to this, my daughter is ate up with crohns from the duodenum down, so even then, the colon is not the only thing that is of concern.

We just kind of get shrugged off and just told that this a way of life for now until they decide we can do something else. This has left my husband and I feeling defeated, we can't leave my daughter with anyone because she has the episodes and no one knows what to do. Heck, after two years, we barely know what to do. We can just sit there and rock her and love on her while she screams for help. We pray that tylenol will do the trick. Last week she literally told me that she wasn't okay.

I understand that infusions for her age have not really been done and they need more "evidence" to do off-label treatment. But we are desperate.

All of this to say, anyone else out there with young kiddos with crohns?

And to those that are adults, what are some more homeopathic things you do to manage crohns?

Thank you to those that take the time to read this and respond. I know it is probably exhausting having people ask you questions. I just can't really ask my daughter much because her vocab is limited and she talks like a caveman, lol.

Finding myself getting anxious whenever my stomach gurgles, which happened pretty consistently before I ended up have an ileocecal resection. Is this just common now? (It’s not as loud and aggressive as it was before my surgery but I still get nervous)
Thank you fam ❤️

What are some of yalls experiences weaning off Budesonide? I think I'm getting hit with the withdrawals hard.

My 5 year old was diagnosed with Crohn's last December, and is currently doing well on Tremfya + after a bowel resection.

She developed walking pneumonia last week (she's in summer camp all day, so not unexpected) and her peds put her on a Z pack. She was still not any better by this weekend, so we took her back, and this time they put her on Amoxicillin for the next 10 days. I'm really worried about how all of the antibiotics are going to affect her, because she's doing so well Crohn's wise right now. If anyone could share their experiences with antibiotics, I would really appreciate it! Thank you!

I constantly have flare ups in my stomach and anus 24/7. And its exacerbated by my social anxiety and it smells horrible. People constantly say they smell poop or that very strong undigested food smell that is worse than poop and its leaking out of me somehow but I cant smell or see it. But other people walk by me and get physically ill and comment on how bad it reeks of poop or sulfer. This has been going on for years. I constantly have urges and pain inside of my rectum. And people can smell me from like 20 feet away im not even kidding. Today i was at a public park and i moved spots and this boy walked up to me and was saying how it smelt like poop where i was standing originally. And also today I walked into a hotel and the lady literally got choked up and her eyes started tearing up and she was covering her nose. Im scheduling a proctologist appointment to check for fistulas and stuff like that. And im scheduling an appointment with a gastrologist to see if I have chrons which im 99.9% sure I do. I just need some sort of emotional support because I feel so alone and like I said I've developed ptsd from offending other people with my god awful smell. If I do have fistulas and chrons im going to try and apply for disability because this has extremely effected my social ife. I've been completely anti social for years because of this. And i don't see myself working with constant flare ups and urges.

I had to take antibiotics for a few weeks due to an unrelated health issue, and unfortunately this triggered a Candida infection in my stomach and esophagus/throat (based on symptoms and external exam). I was prescribed fluconazole for 14 days and followed a strict carb/sugar-free diet during that period. I’m currently entering week 3 of my recovery and slowly reintroducing food I used to be able to eat, while still taking probiotics and monitoring digestion.

Before this, my IBD was well managed with Simlandi (biosimilar for Humira/adalimumab), and I had virtually no symptoms for close to 3 years. Now I'm worried that this infection may trigger a flare up, or that it may take a while to heal fully.

Has anyone else had experienced something similar? How did you handle the transition without triggering a Crohn's flare?

P.S. Luckily, I happen to have a scheduled colonoscopy in 2 weeks, so I'll also discuss this with my GI.

Thanks!

Currently on infliximab, not entirely sure it’s working so this could be a moot point - just opened a letter from Cigna saying they’re not going to be offering individual plans any longer come the first of the new year, and to be 1000% honest with you guys I’m kind of having a breakdown. My G.I. is out of town for another week so it’s not like I can call in the morning and ask what other insurance she accepts so I can plan ahead, but Jesus fuck this is stressing me out more than I would’ve expected.

I need to call her office in the morning anyway to see if another provider can get me a little extra prednisone to carry me through because I fucked up on calculating tapering down after I’d needed to go up after a flare a couple weeks ago, especially now because I can tell this stress is going to fuck with my appetite even worse than wondering why I don’t feel even the tiniest sense of normalcy on Infliximab yet.

If you’ve had to switch insurance in the middle of treatment, how did that go for you? Did it screw up/put a pause in treatment? Did you have to start a different biologic because your new insurance didn’t cover what you’d been taking? If it ends up my Infliximab isn’t doing the trick come a couple more months when it’s officially been six months (that’s how long my doc gave Skyrizi before saying it wasn’t working), should I float the idea of staying on prednisone until I get on a new plan? I’m sorry for ranting and being incoherent here, I just wasn’t expecting this letter or being so completely overwhelmed from reading it. 😭

Hey all.

I’m curious to know if extra intestinal symptoms, like joint pain, went away after surgery?

The idea of surgery scares me but I’m desperate to feel better! I have a consultation with a colorectal surgeon in a few weeks.

It had ti be the heat wave and work, especially with it being physical almost pulled me from remission and almost into a full-blown flare at least a mild flare. Can’t miss any more work financially speaking wish I could have another week off. I can’t lose another $700. Have a G.I. doc appointment tomorrow. Prepared to be gaslit in every way shape or form.

Also how many of you are on dicyclomine its for abdominal pain but i stg it makes ur brain function slower rhan being on benzos. Hard to say if it helos i wanna say yes but the feeling after taking one deadass makes me feel like im the r word.

Still waiting to be 100% sure of my diagnosis. Being treated like it's Crohns by my GI. Insurance isn't approving the mesalamine. I think I'm in a pretty gnarly flare atm. Bad abdominal cramps, nausea, malaise, fatigue, diarrhea that still feels like constipation before it comes out, etc. I'm currently weaning off Budesonide which I didn't think I saw much difference with while actively taking max dose but fuck. I have more intense body pains than I've had in months. Can hardly bend my leg when I try to walk. I went to the ER two days ago and was told nothing was wrong after a CT, blood work, urine test, and x rays. Not sure what's happening and trying to just get it thru to my brain that I'm not dying. Waiting till the weekend is over so I can call my GI. I'm exhausted.

After about 6-7 months of controllable symptoms it’s kicking off again, blood, tenesmus and urgency, the classics, I’ve only got a few days left before I’m home so at least I’ll be there before it hits the fan (get it).

Only a month or so ago I was hyping people up telling them things get better, that I’ll finally be travelling again soon and so will they, better days blah blah blah, maybe I jinxed it.

If you don’t laugh you’ll cry yk, life has a terrible sense of humour, it’s like this disease is conscious sometimes, it waits for the perfect opportunity to pull a fast one.

Just wanted to say it out loud, it’s nice to be heard, I know we’ve all been here before, stay safe everyone.

I’ve been on Azathioprine for 4 months and am losing hair like crazy . Has anyone had this? Do i need to stop the meds for my hair to start growing again?

44 year old male just finishing up my loading dose of 45mg . I know it says acne as a side effect but was hoping to swerved that one has many other people had this problem. And what did you do this is my third biologic now . Don’t want to have to stop it so soon seems to be working ok as far as my crohns is concerned

Is it ok? A zero lactose version of course. I was always a skinny guy but since I got my diagnostic I just can't go past 57kg again. I freaking hate being skinny.

Hi guys! I injected myself with amgevita autopen but a lot of blood came out.In a stream from my upper thigh to my knee.Do you think the medicine also spilled out?

Tomorrow morning I’ll be getting my first Skyrizi infusion! I’m a bit nervous. I’m on Humira now and have been for the past 5 years since I flared horribly and developed a fistula. Humira made me feel great, but I developed psoriasis, eczema, and granulomatous rosacea from it so we are hoping the switch will ease these side effects. Can anyone give me some comforting words of wisdom for my infusion? Thank you & always so grateful for this community! Xo

I know i have lactose intolerance to some degree but it's usually fine. I can take them without any trouble but, just occasionally, it goes wrong. I'm just pissed bc now i need to throw my favorite drink away. I was so excited for it tho 😩

I'm asking on behalf of a family member (65F) who has Crohn's disease for over 15 years.

About 10 years ago, she had surgery to remove intestinal blockages and with pentasa tablets, she's been doing fairly well since then until last week, when her symptoms returned.

She also had a recent hernia repair with mesh placement. Because of the mesh, her doctors feel that another abdominal surgery may not be the best option right now and have recommended starting Remicade instead.

I'm trying to better understand whether Remicade is generally considered a good option in this situation, especially for someone her age who has previously required surgery for strictures. Has anyone had a similar experience, either personally or with a family member? Is age a factor for how effective the medication is or it's side effects? I'd really appreciate hearing about your experiences, including how effective it was and any side effects or concerns we should discuss with the doctors.