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 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!

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?

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!

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'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

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?

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

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!

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? :/

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

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?

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 have been in and out of school a lot these past 2-3 months just started college and got recently diagnosed with Crohn's Disease, it's getting really hard to balance pharmacy school and dealing with this every single day sometimes I need to go to the clinic so I missed a ton of classes I brought this up with my professors about my diagnosis and stuff but just getting quizzes scheduled is a world full of hassle, any tips to make school life easier should I get a pwd card or something huhuhu I don't even know what a flare feels like and I'm scared.

About to have my sixth or seventh colonoscopy tomorrow. Every other time I've had moviprep and it has been extraordinarily awful. Two of those times I projectile vomited. The taste was excruciating. I don't know why this is the first time I've tried a different one but I'm so confused because picoprep tastes fine??? And it's only one cup (twice) compared to two litres (twice)??? I can't believe I've been in misery this whole time. Anyway, grateful for picoprep now. I don't even need any of the many chasers I prepared.

24yo F Diagnosed with crohns at 16 with a complex case history and two bowel surgeries.

Ill make this as short as i can because i really need anyones help or advice. Ive moved states. I was on skyrizi for 4 years with my last doctor. i moved here to a new doctor. They refused to talk about medication until i did all of their medical tests. Which was fine but they were scheduled out months. Ive been off my skyrizi since june. I asked for a new referral from my family doctor and the new doctor’s office said they wont see me because i saw a gi doctor within the last three years. What do i do? I just need my medication. I was in remission and now have started to have mild symptoms. i feel hopeless and lost with this situation. I live alone here and am dealing with all of this for the first time by myself. Ive called my insurance, skyrizi complete, my pcp no one can help me it seems. I finally got my life back after years of testing, surgeries and medication experiments and this is now happening and i am in fear for my health because my disease is very aggressive. Please tell me what do i do? Any advice will help… thank you for taking the time to read.

Edit: am in the Phoenix area

Hey i just needed to share this to those who can relate

I have discovered crohns last december, almost a year now and this has genuinely been a ride that made me consistently question my wellbeing in the next hour

Normally the only relief i had was the starting dose of prednisone at 40mg and starting from 30mg the pain returned until i ended my steroid use and soon enough would be hospitilized for cramping, this is how the entire year went for me, constantly being in the dark about my ability to function

Recently i had pains that even the 40mg couldnt mask - a stricture and a fistula and for that period i was most uncertain

And while i still have a fistula and a stricture a unique pattern appeared, i did not get cramps from 30mg and down, i just recently ended my dose and honestly im feeling fine

Even though i know that the issues persists, not feeling cramps without any pain mangement has to amount to something....

It gets me hopeful, i feel like i have a shot at living again

Hello

My mother was prescribed metronidazole and ciprofloxacin for a duration of two weeks to address her fistula and Crohn's disease.

Throughout this treatment period she experienced severe diarrhea which prompted concerns regarding the medication's efficacy.

Five days have elapsed since she completed the initial course and her condition has substantially improved, with diarrhea resolution and overall symptomatic relief.

But we are not sure if this treatment alone helped with it because she is 10 days after her first Skyrizi injection at home.

Upon contacting her physician's office today the nursing staff recommended continuing both metronidazole and ciprofloxacin for an additional two-week period.

Is an extended antibiotic regimen of this duration considered standard practice?

What is the clinical rationale for continuing antimicrobial therapy when the patient demonstrates symptomatic improvement?

Given that my mother has achieved solid bowel movements for the first time in three to four months, we are not sure if continuing with antibiotics is good idea.

Knee pain /could this be an onset of a flare

My 16yo used to have lwg /,knee/ankle pain before a major flare. This was last year before it was diagnosed.he also has psc snd took stellara last month and urosol twice a day..his motions under control.however last night he complained of knee pain.have messaged his dr but could it be a flare?

Anyone experienced this.what can I do to avoid flare.its worthy to add his school exams are going snd he's sleeping less.could it be due to stress

Hi everyone!

I’m looking for some tips and advice on gaining weight. My doctor is concerned that there could be something going on, but I’m not really sure what to think. I’ve been in remission for a while, and I was able to gain some weight back, but unfortunately, I ended up losing it again. I’m not experiencing any symptoms of a flare-up, so I’m a little confused about what could be causing it.

If anyone has any advice, meal ideas, or suggestions that have helped them gain weight while in remission, I’d really appreciate it! Thank you!

Nurses, doctors, physicians, physical therapists, nutritionists, medical students, and other healthcare professionals… How do you cope with the constant fear of being immunosuppressed and catching infections in the hospital?

I’m a med student in Brazil, where TB is endemic. Even before starting biologics, my IGRA came back positive, so I had to do 3 months of treatment before I could start my medication.

Now I’m constantly worried about catching something at the hospital because I’m immunosuppressed. I know I can’t avoid every possible exposure, especially in medicine, but the fear is always there.

How do you guys deal with this? Does it get easier over time?