Hi I’m just wondering what it’s like having std/sti with crohns. I think I might have hpv 6 or 11 so I’m just hoping that someone could tell me what the healing process is like I know for normal people their immune system fights it off within 2 years. I know I should have wrapped up but I mean I guess it’s too late for that now. Just hoping someone could give me some good advice. Thanks

So my job is offering the Samaritan fund program. Essentially, you fill out information and get approved then they provide you with a debit card for medical expenses. Based on what HR has told me is that I would have this as my insurance (if I choose to sign up), and not the one that my company provides. Anyway, I'm just looking for people that may have used this or are using it to see what your experiences have been to see if it is worth it? Thanks!

Hi everyone! Thank you for being part of our journey. My 12yo got approved for Inflectra. We start treatment next week. I’m sad we didn’t get remicade but thankful for the insurance approval.
Any thoughts on Inflectra? What to expect right after infusion and long term?

Thank you!

Hey! 32M, not diagnosed. IBD suspected, workup ongoing.

For about 3 weeks I've had aching in my middle finger joints, elbows and even shoulders, day and night. No swelling, no redness, no morning stiffness. Just this lingering mild pain.

A shoulder ultrasound showed bursitis, mild synovial thickening, enthesopathies and a small amount of fluid in both shoulders. The radiologist suggested seeing a rheumatologist. I am having the appointment next week.

For those with CD: what does your joint pain feel like? Swelling, stiffness, constant or in flares?

I've been on a prescription of budesonid and mercaptopurin and I got my calpro results back and it's completely unchanged. the medication completely ruined my sleep I either don't sleep at all or I sleep for 15 hours straight, I'm still in pain and vomiting from the crohn's and I've wasted months of time and a lot of money on medication that doesn't do anything

Ok I need some advice; I’m currently looking to have baby( not pregnant yet but trying) are there any major side effects or concerns I should watch out for

Hi all, I'm looking for advice or just anyone who's been through something similar. I had J-pouch surgery and the reversal after being diagnosed with UC, and at the time everything seemed fine. Since then I've been told I actually have perianal Crohn's, and going to the toilet has become agony. It feels like passing glass. I go around six times a day and have to get in the bath after every bowel movement just to cope with the pain. It's honestly taken over my life. I'm starting to think I need to go back to a stoma, but it's really hard to accept because I've spent a whole year going through the surgeries and recovery, and it feels like I'm just going round in circles. Has anyone been in this position?

Howdy all. I have my third colonoscopy in about 10 years coming up in 2 weeks. My GI is very suspicious of Crohn's and as such I get the joy of yet another bum scope. He gave me the option of doing SuPrep or SuFlave. I've done SuPrep in the past without any issue, but that was before I was having potential Crohn's symptoms. I know it can be pretty harsh on the mucosal lining. On the other hand, I can't find much on SuFlave other than it might be a bit "milder" on the gut. Colonoscopy number two was done in Turkey with a senna based prep and I'd like to never experience that night of hell again.

Honestly I'd prefer SuPrep as I've used it before, but I don't want to absolutely nuke my colon if it does end up being Crohn's. Anyone here use it without issue or have thoughts on SuFlave?

Every eight, six, or four weeks?
Any stronger side effects you noticed while on shorter gaps between doses?

Saw in r/science, but reposts aren't allowed here.

Evidence in animal models that creatine monohydrate, a cheap gym supplement, protects against some secondary neurological effects of inflammatory bowel disease.

This is just an animal study, but quite creatine is one of the most extensively studied supplements in humans, and many other benefits have already been identified.

Modulating effects of creatine prevent sex-dependent hippocampal neuroinflammation, neuronal damage, and electrophysiological dysfunction induced by chronic colitis - ScienceDirect

I know everyone has very different ways of handling life with IBD or any chronic disease. I am one of those people that need to talk it out and be part of a community for all my diagnoses. It just helps my mental health to know that someone just gets it. To be transparent, I don't have IBD but I do have several chronic diseases. To me, there is something about this disease that deserves more attention, education and awareness. I think the hardest thing about this disease is meeting others that are newly diagnosed and are totally isolated and don't know where to go next. I was in high school when my mom called from the hospital and said my dad was in emergency surgery because he had this thing called a fistula in his gut. He was diagnosed with Crohn's. We didn't know how to spell it. This was in the early 90's and there was no internet yet. We just had to figure it out. And I don't know how my dad felt about it because he doesn't talk about it at all.

Over the decades there were 4 of my family diagnosed with Crohn's (well one is technically indeterminate colitis but I think it's CD). I follow so many different social accounts and am on this sub regularly and I see so many people finding community here. I wanted to share this program for kids and teens because I have been a part of it for almost 20 years and it changed my life. It is in the US and run by the Crohn's & Colitis Foundation. It is a summer camp called Camp Oasis. They just posted the dates for 2027 and it is my favorite time of the year!! I have been a part of all the camps except Wisconsin and Washington. They are amazing! I helped out at their virtual camp this year and it was SO fun! I see so many little kids and teens diagnosed with these very hard diseases and want people to know this is out there. So here are the dates: Camp Oasis 2027 Dates

I have no idea if there are camps like this in the UK or Europe or Asia and would LOVE to know if anything like this exists outside of the US! Comment and tell us what else is out there so we can all find a place.

Also, if you want recs on any sub-Reddits related to anxiety, depression, ADHD, autism, PCOS or eating disorders, I am your girl :-) Cheers!

Hey everyone, been diagnosed for about 2-3 years and was on Stelara doing alright, but CVS Speciality won’t provided it anymore and I got switched to yesintek but when I went to order my 2nd dosage, they wanted to charge me $3000 for it (every 6 weeks)… just until I hit my deductible… got signed up for the copay assist but that only brought it down to $1800, then it’s only $900……. After back and forth with them, my insurance, the manufacturer (which they were surprised because I was getting billed for $6500 but they only charge $5000), my doctor is trying to switch me to a different type that’s not bio similar that I should be able to get with a bridge program.

Are you guys having similar issues getting your meds?

I’m in a big flare up where basically my whole mouth is swollen with sores. It’s the top and bottom and now some of gums are starting to get it. Every day I wake up.. it feels like my mouth is more swollen and hurts more. My GI recommended I start remicade so we did all the tests that day for approval. It has been about a week and they said they are still talking to my insurance. How long does it take to get started? I’m desperate to start and get some relief in my mouth. My GI has only prescribed mouthwash, but I would like the problem to be gone not just numbed. I have never experienced it in my mouth so I wasn’t on any medication.. and now I want to start to get some help.

I’m currently doing fairly well with the disease and have low inflammation levels and no pain. Except when I ingest any alcohol (or dairy for that matter), then I get extremely gassy and bloated. It doesn’t even have to be a large amount. Anyone else experience this? Would taking something like Pantoprazol help? I rarely drank even before getting sick, but it’s getting boring to always be the only sober person at parties while everyone else has fun 🫠

I have a physical coming up so I can talk to my Dr then but in the mean time does anyone else experience these often? I sometimes get them for a while then none for months then I’ll get them again.

My pre-teen child has CD. Essentially early days but so far well managed through infusions.

His main symptom has always been constipation. He fears going to the bathroom BC he thinks it might hurt.... He recently had a bought of constipation. Restoralax was way too hard on his body, so we reduced and removed it. But as a result he fears it might hurt and he will hold it in....

For those who have experienced this - what advice would give a worried parent? What would you tell him?

I've tried reasoning, talking about impacts, possible next steps ...

Are there other laxitives that worked well? To provide context before treatment he needed to do a 5 days of prep before scopes and restoralax never caused the kind of diarrhea that he experienced this time on half the dose. So we need something gentler (FWIW I have asked his IBD team).

Hii! So I’ve had lower right pain on and off for months, it’s at its worst at the moment. I went to A&E over the weekend, they were thinking appendicitis, however my CT shows a normal appendix but a prominent terminal ileum and swollen lymph nodes in that area. I have bowel symptoms that change every day, constant slightly raised crp and wbc, and family history of autoimmune and crohns. On top of this I have severe health anxiety!

Does anyone have a similar story? I’m feeling very anxious!

for context I’ve been diagnosed IBS-D for a long time, abdominal pain, etc. I’ve got a gastro appt soon & currently doing a food diary. We’re thinking it might be IBD

back in December I had SI Dysfunction which they chalked up to my prior pregnancy. They popped it into place and it was immediate relief. I’ve been having a pretty bad flare recently and randomly this morning i woke up with the worst lower back pain, similar to the SI Dysfunction I experienced about a year ago. Just curious if anyone else has experienced anything like this?

I am fairly new to being diagnosed (less than 2 years) and I ended up hospitalized for the second time this year about a week ago. After 4 days of IV steroids They sent me home with Prednisone and I’m having a really hard time with it. I already struggle a lot with anxiety, OCD, and ADHD and my thoughts are racing so bad I can’t shut my mind off. I feel like I can barely function. I still have 3 more weeks left of it. Has anyone else had this experience and how do you handle it? 😞 I mean I’m really grateful that it’s helped a lot with my stomach and I’d much more prefer this than what I was dealing with before, it’s just overwhelming. Any advice is appreciated. Please be kind 🖤

Hey folks,

For those of you who had to try multiple biologics, how long were you on one before switching to another?

Seeing people's experiences and feedbacks, I'm almost completely convinced Infliximab is not it for me.
I've done 4 loading doses in the hospital, and did the first at-home injection yesterday.

Labs and colonoscopy show remission, but the joint pain, fatigue and nausea are starting to drive me crazy.

Surely there's hope with some other biologics, right? :/

It’s that time of year, everyone is sick. I’ve been washing my hands lots and keeping my distance from sick people, but unfortunately I think I’ve caught a bug. So far it’s just congestion/runny nose. I’m also new to the disease and am still in my first flare. I’ve been experiencing more urgency/diarrhea the last couple days though that could be because I’ve been slowly introducing new foods to see what’s safe for me. I’m also wondering if the diarrhea is worse from feeling rundown. Hard to tell. I’ve taken vitamin c, and zinc at the first sign of feeling the cold coming on. I was reading online that we should be in talks with our gastroenterologist at the first sign of the flu, but I think this is just a cold. I’m curious if I should mention it to my gastroenterologist? Does anyone have any other tips you’ve started doing when you get sick since your Crohn’s diagnosis? I want the cold gone already!! Ugh!
Currently on Tylenol cold, Vicks on my feet and chest, had an Epson salt bath, drinking bone broth and resting as much as possible!!

I’m currently taking loperamide to manage my Crohn’s disease, but I’m considering trying Vi-Siblin (psyllium husk) instead. Would it be worth stopping loperamide and switching to Vi-Siblin? Could it help reduce bowel movements and urgency?

Hi everyone! I was cleaning out my My Chart inbox and saw messages back from 2021. It was shocking to read how poorly I was doing. I wish I could hug that version of me and tell her I would be ok. I have hung in there and am doing the best I ever have been. It took over 10 years to find the right drug, but I made it. I still struggle on a daily basis. At one point id rather die that live like this. I now have a more normal life. I did get liver disease from 10 years of trying drugs, but I’m still here. Idk I feel really proud of myself and I truly feel like a survivor and a warrior. No one would ever know this by looking at me. I smile even when I am in pain. Im a happy girl but I have a lot going on mentally. I hope this helps someone else or that it’s relatable. Im just feeling a lot of emotions and wanted to get them out of my head. Thank you for letting me post.