r/CrohnsDisease

Hey guys! I’m a 24 year old who had Crohn’s for 12 years. Before college I was on stelara which put me into remission, but I was stupid and stopped taking it when I started college. My new GI doctor put me on skyrizi since my calprotectin test came back as >800. Only issue is… it’s been about three weeks since my third loading dose and I just got another calprotectin test which came back as >800. Does this mean skyrizi isn’t working for me or does it just need more time? I know Skyrizi is very similar to stelara so I had high hopes. Hoping to get some opinions to know what to expect during my GI appointment next week.

If you have what are your experiences? Did it help? If so what symptoms did it help with and what are the pros and cons in your experience?
I’m in college and considering it, but it’s not allowed in dorms.

Hi all, I have a bit of a unique Crohn's journey. I'm 35. I was diagnosed at age 13. My parents refused to give me steroids and other strong drugs and took a homeopathic route.

Long story short: I was essentially symptom free for all my 20s. But roughly 3 years ago, I started getting episodes of immense stomach discomfort, distention, nausea, vomiting. These episodes are luckily few and far between (every 4-5 months), but they are debilitating.

It wasn't until this year, after an ER visit, that doctors found out I had strictures in my small intestine and these episodes were partial obstructions. I also have iron deficient anemia that was bandaged with iron infusion last year, but I've dropped back to low levels now.

MRI and Double balloon enteroscopy revealed 3 small bowel strictures. One was mostly scar tissue that the enteroscopy procedure resolved. But the second one was actively inflamed and they could not safely push the camera through. So my GI doc recommended Remicade.

I'm nervous to go on Remicade. I understand that it lowers the immune system and it'll be easier to contract diseases. I think part of my nervousness is that I was raised to be skeptical of pharmaceuticals. Also, outside of my few episodes, I live a pretty normal, asymptomatic life. I eat mostly anything (health conscious though, focus on whole foods), I workout, I drink occasionally, I travel, etc. So I'm not in a position where this drug will directly improve my quality of life, but can potentially jeopardize it with my lowered immune system.

But on the other hand, I know something must be done. My iron levels are pretty bad (although I don't feel fatigued). The strictures are there. I'm hoping my healthy diet could help out, but I'm not sure how much I can rely on that.

Could really use some advice, thoughts, and feedback from the community! Appreciate ya'll for reading through this.

I’m sure this has been discussed here before and I’m just not very good at finding the previous post(s).

What are some odd foods that bring you comfort/are safe during a flare? I’m talking about food that other people or yourself would have assumed would be the worst to have during a flare. For example, when I’m having a flare, I can always count on the chicken nuggets and fries from McDonald’s to settle fine and fill me up a bit. Whenever I tell people this they always seem shocked and say that they thought that would be terrible during a flare.

Hi, I'm not the one with Crohn's, but my wife is. She's been diagnosed with Crohn's since her late teens, we're both in our late 20s now. We're covered under Aetna by her work. She was denied Skyrizi once in late August, and she and her nurse ambassador submitted for an appeal. Just today, we got a letter stating that Aetna denied her first level appeal, and now they want her to send a written letter to their customer service office for a second level appeal.

I'm so fucking angry and dejected for her. She was (mistakenly) put on Rinvoq instead of getting her usual Humira injections late last year, but because Rinvoq was actually working this time, they opted to keep her on despite the mistake.

However, the Rinvoq stopped being effective probably around April, and she's been having a horrible flare up since then. They scheduled her for a dual colonoscopy/endoscopy in early August, her gastroenterologist prescribed her Skyrizi, and since then it's been a long, stupid fight with Aetna to actually get her on it.

The Rinvoq doesn't do fucking anything, and she's always in pain and she's so scared she's going to be put on an ostomy bag or worse. I'm so fucking mad, and I will always keep up high spirits/optimism, but I'm exhausted for her and I just want her to get back into remission like she had while she took Humira.

Any advice, suggestions, or validation are much appreciated. Sending all my love to everyone in this sub.

Inside of anus. I have a bidet. My ass hurts greatly. Diarhea every day.

Hey, I’m from Andhra Pradesh and currently living in Bangalore. Can anyone suggest a good protein powder that you personally use and haven’t had any issues with?

I have two options in mind: Nutrabox Soy Isolate and NutriGa Soy Isolate. I’m not sure whether soy isolate is a good option or not, so I’d really appreciate your opinions and experiences with it.

I’m also on a tight budget and can’t spend more than ₹1,500 per kg of protein powder. So I’m mainly looking for something that is good quality and affordable.

Please let me know what you recommend and, if you’ve used either of these products, how your experience has been.

Has anyone had a MRE with no inflammation observed but yet has debilitating symptoms? I had a resection in June and in July my symptoms came back worse than they did before surgery. Just completed my scan and it’s quite literally unremarkable. I’m at a loss of what to do from here. Waiting to hear from my GI but also wanted to hear other peoples stories with this.

So I want to say it’s been a little less than a year since I started Skyrizi. It’s been a miracle drug for me despite the stress of having to hang out with Dave every eight weeks since my doctor refuses to help me (and I’m stubborn and don’t want a nurse in my home) and two devices that malfunctioned. I’m starting to freak out because I’ve been on Humira, Entivyo, Rinvoq, and Remicade. What other options are there? I refuse to go anywhere near prednisone ever again. I hate how long prior authorizations take. I have Medicaid, so things take ages.

I’ve developed a fear of eating because of my crohns. I’ll maybe eat a few cheese sticks a day to get by. I’m in Mexico right now and I’m sad I can’t indulge like I want to with food. 🥲 So my average healthy weight is 125-135 lbs. I was 118 lbs before leaving for my trip. The lowest I’ve hit was 111 lbs back in February. 5’8, 30 year old female if that means anything. I’m also a +20 year vegetarian and I try to eat as clean as possible. I’m just tired of this pain and embarrassment. I have to wear pads constantly because I’m terrified of accidents. If I lift anything heavy a little comes out. I just hate this so much.

I feel like Crohn’s has taken so much from me. I’m sorry I’m essentially ranting now. I just feel like y’all understand. I feel so restricted and alone. Thanks for reading this far. I do have a scope scheduled for November. I’m nervous and dreading it as I just had one last year. 🥲

If anyone can think of other biologics, let me know. I just want to have ideas for my doctor for my next appointment. I’m tired of this trial and error. 😭

I know Rinvoq isn’t considered safe for pregnancy, but has anyone done egg retrievals while taking it just to create and freeze embryos, with no embryo transfer or pregnancy planned?

Hi everyone, I’m looking for recommendations for a very experienced gastroenterologist, preferably someone who specialises in Crohn’s disease/IBD, in Kochi or Ernakulam for my mother.

She has been dealing with Crohn’s disease for many years and is currently on methotrexate 10 mg weekly. She does have periods where she improves, eats better and gains some weight, but recently her symptoms have become difficult again. She sometimes has to use the washroom around 20 times a day, including during the night or early morning, with recurrent blood and mucus discharge, abdominal pain that can occasionally become severe, bloating, digestive/IBS-type symptoms, perianal discomfort, and significant weakness from the frequent bowel movements.

She recently had an MRI fistulogram which thankfully showed no perianal fistula, only mild nonspecific perianal soft-tissue edema. Her recent CBC has actually improved and her doctor said her inflammation levels have not significantly changed, but the symptoms continue to affect her quality of life quite badly.

She has been receiving treatment at Amrita Hospital for many years, but unfortunately we haven’t found the care there very helpful for her current situation, so we are now looking for a fresh opinion elsewhere. I’d really like to find someone who will look at her case comprehensively rather than just treating individual symptoms, and who has substantial experience managing complicated Crohn’s/IBD cases. If anyone here has personal experience with a really good gastroenterologist or IBD specialist in Kerala, please share the doctor’s name and hospital/clinic. Recommendations from Crohn’s patients or their families would be especially helpful. Thank you so much. 🙏

My husband is getting his surgery in a week. He's pretty anxious about the hospital stay and recovery, much more than the surgery itself.

He has chronic back pain and while I'm sure the pain killers will help a lot, being in a bed or mainly sedentary for long periods of time has been really painful. We just want to make sure he's as comfortable as he can be in the hospital, but also at home after the stay.

What are some questions he can ask before surgery or things I can ask/request during the surgery and while he's in the hospital that might make his stay a little less anxiety inducing and less uncomfortable?

Any tips for recovery as well? For the patient but also for the supporting partner. Items or accessories for comfort and convenience? Food and meal tips? Any precautions that might help prevent or prepare for possible complications?

I might be overthinking all this, but with us both having ADHD and mental health issues, we both find a lot of peace when we are as prepared as possible and have some kind of plan!

Thanks!

Hey, i recently got diagnosed with crohns. im 22 years old, i have been having symptoms for at least a year and my main complaint was the constant diarrhea. I also have joint pain and some stomach pain sometimes.
But my problems are usually not as severe as many of you mentioned on this sub. This was actually the reason it took so long for me to got diagnosed. Even though my calprotectin was too high (2000), i didn't have extreme pain or structural damage (thankfully).
I was also a smoker before the diagnosis but i quit for obvious reasons.
I got started with budesonid+mesalazine like 2 weeks ago, there has been some improvement in the toilet but its still not normal human poop/i still occasionally have diarrhea and my joint pain has actually increased?

im really tired of thinking about this all the time, i was always anxious about health and now i actually have something to be anxious about and it is so much worse.
I overthink every single symptom i have, i have daily conversations with gemini about all that and it REALLY affects my mental health and my mood.

my main concern is that i love my freedom and i dont wanna give up on any of it. i love to travel, i wanna move away to a diff country, i am also a dancer i really need my body to work well, i also love my nights out and i want to drink alcohol (usually makes everything worse when i drink)
i also worry that even tho its mild now it might get worse in the future ? can it? please not.

have you experienced these and how do you deal with it?

Been on skyrizi about 2 years, currently likely failing it, but sticking with it a little bit longer to see. anyway. my last 3 doses have been weird. each one of them, the OBI stops about 90% of the way there (light still blinking green), pauses for a while, and then starts-stops-starts-stops-STARTS AGGRESSIVELY-stops and so on, until it finally gives me the solid green light. the first time it happened, it didn't complete the injection, blinked red, and i had to get a replacement dose, which was really annoying.

so, i'm wondering: has anyone else experienced the quality of the OBIs declining? is it a functional issue with the tech--like maybe some sleuth has done some digging and discovered they're using cheaper materials now or outsourcing labor?? or maybe an issue with the supply chain/shipping? i will say, i never had issues when i got my skyrizi in new york, but i moved to a new state and my doses since then have been the messed up ones....

Recently diagnosed with crohns - 2 ulcers in small intestine. I have been complaining about GI issues for 12 + years and always told to take a probiotic and eat a med diet. I constantly have gas, my stool is typically soft . Rarely do I have diarrhea. Although I wipe for ever. BM’s once daily, maybe twice. No blood. No weight loss. So I am thinking a ver mild case.

Anyone else sound like me?

Starting prednisone and will like move to biologic.

Hi there,

Is anyone in this group a registered clinical counsellor or a psychologist AND a crohns patient? I've always wanted to enter this field in private practice but my crohns is holding me back. Things im fearful of:

1. passing gas from my ostomy in session

2. extended leave without pay bc of crohns

3. loss of clients due to leave for crohns

4. my own mental health being low when my crohns is bad

Have you experienced these? Are they genuine incompatibilities between our illness and this field? Is it reasonable to not pursue for these reasons?

I’m currently on Hyrimoz (adalimumab) and I've been in remission for several years.

I wanted to try Ashwagandha daily to see if it helps with anxiety and overthinking, but I’ve read that it can affect the immune system and might not be recommended if you have an autoimmune condition.

Does anyone here take Ashwagandha while on a biologic? Did your GI say it was okay?

I’m an international student studying in the US from Korea and was diagnosed with Crohn’s this past summer while I was back in Korea.

One thing I’m trying to wrap my head around is how different the U.S. insurance system will be. In Korea, Crohn’s qualifies for a government program that heavily reduces the patient’s share of medical costs. For example, I paid roughly $40 for an MRI and around $30 for a colonoscopy. I also have private Korean indemnity insurance, which reimburses about 80% of many of the remaining eligible costs, so my actual yearly medical spending has been pretty minimal.

I’m returning to the U.S. now, and after graduation I already have a corporate job lined up that comes with employer-sponsored health insurance.

For people here with Crohn’s who have decent employer insurance: what do your yearly healthcare costs usually look like?

Should I basically expect to hit my out-of-pocket maximum every year because of biologics, colonoscopies, MRIs, labs, GI visits, etc.? Or is that not necessarily the case with a good employer plan?

I’m still learning how deductibles, copays/coinsurance, specialty pharmacy benefits, manufacturer assistance programs, and the out-of-pocket max all interact in the U.S., so I’d really appreciate hearing what people actually end up paying in practice.

Coming from Korea, where my Crohn’s-related costs have been extremely low, I’m mainly trying to figure out what a realistic annual healthcare budget would be in the U.S.

My 16yo knows if he avoids chocolates and sweets his body is under control.the minute he eats within a few days he gets cysts on face.

So my son ate some bars without my knowledge. I suspected when is otherwise clear face developed cysts and there was some change in his behaviour (I have noticed when he stays away from choc n stuff he's calm ,provokes others less).I repeatedly asked if he ate anything..his right side abdomen was also slightly hurting n he had a somewhat 'loose-ish' motion.

Now I came to know he indeed ate..so how can I prevent his body to flare. Am concerned as this month end we are flying to attend a wedding.i want him to be in perfect health. Should I switch to soft diet?