Hi everyone.

I started humira 5 weeks ago and now I have a dose every two weeks.

Initially I had an improvement after the loading dose for 2 weeks and then the symptoms and problems returned despite the normal dose. I still have bloody poop, fatigue, bloating, headache etc..

Anybody in this situation who had a big improvement at the very beginning and then the symptoms came back?

Hi all. I am not diagnosed with Crohns, but I’m having a lot of GI issues, and it’s one of the things being considered as I go through testing. I’m curious if my symptoms sound anything like anyone else’s experiences.

I’ve been having stomach problems (mostly diarrhea) for several years now. In college, I thought it was just because I wasn’t eating well. I’m now five years out of college, and my issues have only gotten worse. Within the past six months especially, I’ve really made an effort to clean up my diet and my symptoms are still only getting worse. I have to go to the bathroom almost immediately after eating, and if I don’t, I get horrible stomach cramps. It doesn’t matter what I eat, it will make me need to go.

I had blood work done, and everything was completely normal. My calprotectin level was 78 (I think that technically high, but I’ve seen a lot of people on here say theirs has been 500, so idk).

About a week ago, I had a really bad bout of Flu A that completely wrecked my already dysfunctional GI tract. Even being over the illness, my diarrhea has been so much worse. Within the past hour I’ve had to get out of bed three times to go.

Also, I haven’t lost weight, if anything I’ve gained it. I’ve read that some do gain weight with Crohns, but it’s much less likely. I’m 27F.

I know this could simply be IBS, but it just feels so debilitating like it must be something more than that. Any insight would be greatly appreciated!!

Hi all! So I ended up in the hospital in August of 2023 with intestinal ulcers. I was bleeding, vomiting, in the most excruciating pain etc. I had always had GI symptoms and was always brushed off told I had IBS. The hospital staff discharged me after a week and said they suspect I have Crohn’s but need to wait for the intestinal biopsies to come back. They came back “normal” and they said they don’t know why I had the ulcers. Left undiagnosed and confused. I’ve had symptoms of Crohn’s since and followed up with my GI who re-did my colonoscopy and said it looked completely fine and biopsies were normal 6 months later. I just had another follow up today (a year later) and explained I’ve been having awful abdominal cramping, very urgent bathroom trips, nausea, weight loss, appetite loss, worsening fatigue, etc. she finally agreed to a stool test, follow up endoscopy, bloodwork. Anyone have similar experience prior to diagnosis? Also, for the stool test..is it okay to add more stool to a tube (there’s no liquid in it-just empty tube) if you didn’t add enough initially? I’m new to the stool testing and the lab gave pretty unclear instructions. I’m stressed :( thank you guys in advance for helping out. This is so frustrating.

Backstory: I was diagnosed with Crohn’s when I was 18 after 3 years of horrible flair ups and no answers. I was put on mesalamine (along with on/off usage of steroids) and in my early twenties my Crohn’s became ‘mild’ and I’ve lived a relatively normal life since then other than a flare up in 2018. Prior to 2018 my Crohn’s was predominantly confined to my ilium, but after the flare I now experience what I consider mild symptoms throughout my entire digestive tract. My symptoms now primarily consist of ulcers in the back of my throat, perianal ulcers, hemorrhoids, anal fissures, and occasional bloody stool. Compared to my teens and early twenties the pain I experience is mild and I only have these symptoms once every couple of months.

I started seeing a new PA a couple of years ago and she has been pushing for me to switch from mesalamine to a biologic. Honestly, I was hesitant out of fear and some imposter syndrome since my Crohn’s has been so mild and I had a gastro a few years prior question whether I had Crohn’s due to a clear colonoscopy (only met the guy for the colonoscopy and never saw him again).

Over the last couple of months my symptoms have started to occur on a more frequent basis and I agreed to move to a biologic (Skyrizi). My initial infusion was scheduled for next week, but I was informed today the appointment was canceled and I needed to have a colonoscopy and some blood work done (now scheduled for the end of this month). The nurse was unable to say why and I asked for an appointment with my PA to go over it. I haven’t done a colonoscopy with this clinic and am due for one, but I don’t understand why my infusion was canceled.

Any insight or similar experiences?

Hello . Today i had a calprotectin test . Unfortunately i had diarrhea for a few days and been taking flagyl. My calprotectin test came 62 . Last time was 600. My question is did flagyl lower my calprotectin? Does it lower it?

Sort of a question but mostly a vent... I have been managing a Crohn's flare while pregnant-- something my OB is very aware of as I've been to the ER for fluids, etc. He called me yesterday to follow up on recent blood tests to ask if I eat red meat and encouraging me to go out for a cheeseburger to get my Iron levels up.

Seriously!? I would love nothing more than to prioritize nutrition but these days it is more survival than anything else.

I was able to advocate for iron infusions, but am still annoyed at his lack of awareness around what a Crohn's flare is.

Anyone else have a similar experience navigating doctors across different fields?

I have been backed up today so my mom had me take laxatives. Pain from hemorrhoids has become more and more intense throughout the day, any diarrhea will leave me in debilitating pain. I feel very backed up right now, but I cannot poop, when I try I get possibly the worst pain of my life in the anus, akin to someone taking a razor and trying to slice the inside of my anus open. I'm screaming and sobbing from the pain, and I have a high pain tolerance. I'm having intense stomach pain. Please, I need any advice.

I have both Crohn’s and ulcerative colitis and have been on Humira for the last 2.5yrs. I went to see my dermatologist a few weeks ago about a really bad rash/dry flaky skin that I’ve been dealing with for some time (I posted about this a while back) and she confirmed my suspicions that Humira could very well be the culprit. The same week I saw my derm, I saw my gastroenterologist and after discussing the unbearable skin issues and what my dermatologist said, we decided to make the switch to Stelara. I haven’t taken my biweekly dose of Humira for almost a month now while waiting for the prior authorization with my insurance company to make this switch and I am starting to feel the effects of not having any meds in my system. Today, I received the notification from my insurance stating the following: “The request for coverage for STELARA INJ 45MG/0.5, use as directed (2 injections per 56 days), is denied. This decision is based on health plan criteria for STELARA INJ 45MG/0.5. This medicine is only covered if you have Plaque Psoriasis, Psoriatic Arthritis, Crohn's Disease, Ulcerative Colitis and meet indication specific criteria. You do not meet the criteria listed above.” Laughable response considering I have not one, but TWO of the above mentioned conditions 😒 I was on the phone for way too long today trying to appeal this and got nowhere. They told me my doctor would have to handle it from here. Absolute rubbish!

When I do finally getting this mess sorted, I am curious what the cost is for Stelara and if there is a savings/copay card like I had for Humira. I have United Healthcare Choice Plus and paid nothing for my Humira with the copay card applied. Hoping it will be similar or the same with Stelara.

Felt fine. A few hours later into the late afternoon I started to feel like I had been hit by a truck

Nausea, headache, chills, major fatigue, dizzy.

Doing better now for the most part after napping on and off the rest of the day.

Hopefully this shit works because I’m tired of the prednisone lol

I am having a colonoscopy for the first time in the morning and then am doing the prep right now and my butt feels like I have a blow torch blowing directly towards my butthole and all around the area! What can I use to help!?!?

My worst symptom through this all has been, hands down, fatigue. It really hurts because I was always a super busy body before this. I don't say that only to vent though. I acknowledge and have accepted that this is, for the time being, my new reality. What I want to know is how do you all work through this, or what helps with your fatigue?

For me, sleeping in extra on my off days helps. Can't think of much else though, honestly, other than pounding zero sugar electrolyte drinks. Though there is this mental framework I heard about that I haven't taken to heart yet, maybe due to denial deep down I need to address. But it's the fork analogy some of you may have heard about. Essentially you only have so many forks in a given day, and you need to accept that you can only address as much tasks within a day as forks you have available. I'm really gonna sit with that one and give it a conscious effort.

Lastly, I want to add something. I've noticed a lot of threads being just doom and gloom. And when I think about when I was alone in another state going through the worst of this, I completely understand. But in my 2+ years of dealing with this I've learned that the psychological toll might be worse than the physical. So keep hope in your heart. Even if you forget it's there, keep it alive. If that makes sense.

for context i am a 17 year old girl, i have been diagnosed with crohns for about 3 years now and i am currently on rinvoq for about 4 months after being on remicade and then stelara. My throat and mouth have been weird lately.

1. At the start of january i noticed a lot of mouth ulcers/canker sores on the roof of my mouth, under my lip/under my bottom front teeth, and near the back of my mouth. they were very painful but after a couple weeks they went away with the help of magic mouthwash.
2. at the same time as these sores, when i swallow it almost feels like saliva/food/drinks get stuck on something for a second, then goes down, and then i feel like i'm almost going to throw up. this gets worse throughout the day, and a couple weeks ago i did throw up at night because of this weird swallowing sensation. it went away for a week or 2 but now it's back.
3. starting on last friday, my throat started feeling sharp/stingy and painful when i swallowed. this has kind of gone away now, but the weird swallowing sensation thing has come back.

has this happened to anyone else? i have went to my pediatric doctor twice now and got strep and herpes swabs (both negative). i think it's just a flare up but it's really weird, uncomfortable, and painful. it hurts to eat almost every food.

my stomach has also not felt nauseous at this time, it has just been my throat/swallowing.

anyway if anyone knows what this is please help!

update: i just threw up again about an hour ago because of the weird swallowing thing. my stomach doesn't feel nauseous at all it's just the throat.

Anyone heard of Journavx (suzetrigine)? My mom just told me about it. Looks like it's mostly used in acute pain settings, just curious to know if anyone has discussed this with their physician regarding chronic pain/Crohn's disease?

I'm 19 and have been on Crohn's medication since I was 10 years old. I went on Humira when I was 15 and I know that you can get sick more easily and it be more serious because of this medication. My girlfriend has a cold right now and I have been taking care of her. It's nothing too bad just sinus congestion and sore throat with some sinus headaches. Are the chances really that much higher than I'll get sick and it be worse? It's been a few days, and I still feel fine. I just want to know if it's something I'll miss class over or be really bad. (I'm going to take care of her either way because I love her, and she deserves it) I just mostly want to know what to expect. My mom always tells me that I have to be super careful about being sick and I am but is being around my girlfriend something I can do safely? I feel like it can't actually be that bad.

I just started skirizi on Tuesday with my first infusion and since the day after I’ve had terrible muscle tension in my upper back, neck, and calves. I’ve always been prone to upper back muscle difficulties, but this is far worse than I’ve ever had. Muscle tension doesn’t seem to be a noted side effect but it’s so pronounced in me. Has anybody else encountered this? I’m hoping it’ll go away with time and be less pronounced as I go. Right now I’m really ramping up my chiro, Massage, and starting acupuncture.

Hey everyone,

(23F) I was diagnosed with Crohn’s disease in 2021 and have since lost over 50 lbs. I used to be stronger and healthier, but now I feel weak and struggle to put weight back on. I know this disease makes it tough, but I’m desperate to regain strength and feel better.

For those who have been in a similar situation, what worked for you? Any high-calorie, gut-friendly foods or meal plans that helped? Supplements? Exercise routines that don’t leave you feeling drained?

I appreciate any advice—I just want to feel like myself again.

I just spent the last 3 months working up to donating my STEM cells to a leukemia patient, this involved multiple blood draws and hours of health history screenings. It is on my screening that I more than likely have an IBD (my dad has Crohns + my gut microbiome labs point to it).

They had me go to multiple neurologists because of my (unrelated) migraines and kept asking for more and more clarification that my migraines will not be exacerbated by this process. In doing so, they didn’t clock the IBD (the one that is literally on my chart, I have triple checked).

I was set to donate on Tuesday, and was gonna start the Filgrastim injections today; but yesterday I had some rectal bleeding, which I told them, and they asked me to go to the ER to get cleared. It was just a fissure, but in this process or reviewing my paperwork they finally clocked my IBD, and told me that I cannot donate.

Filgrastim is used to boost your white blood cells so you have enough to donate, but after donation while they are depleted it can exacerbate colitis.

If you are on the registry and have IBD, you cannot donate STEM cells, but you can donate bone marrow (which is much more difficult to recover from).

I’ve been marked unavailable on the registry for at least 3 months or until I can show that my IBD is controlled, at which point I can donate bone marrow, but it is much more invasive with more intensive rehab.

Currently, I’m pretty sad and annoyed. I was so close to being able to save someone’s life, just to be told that I can’t, due to something they have known for months, but only now realized.

I guess this is just a PSA for people on the registry and me verbally processing my emotions.

God bless.

Does anyone regularly get flares specific times of the year of the extra-intestinal symptoms? Do you have any ways you try to calm down your immune system besides maintenance meds?

Those who had bowel resection and got it reconnected, does your anastomosis site (connection) have ischemic changes based on colonoscopy findings?

Family is planning a trip to Orlando in the summer for my brothers graduation, I really want to go but everytime I’ve flown I have a flare up, thought about just driving there but the drive takes over a day if I didn’t stop once which isn’t possible so it’ll take at least 2-3 days for me to get there and that’s a lot of extra time away from home and work. Has anybody else had any experience flying with Crohn’s, was it maybe just the stress that triggered the flares before and not the flying itself because if that’s the case I’ll probably just fly as I’m in a much better mental state then I was the previous times I’ve flown, and I’m also in remission and on a higher dose of medicine then I was on the last times I flew. Has anybody had any experience with flying and flares? Am I putting myself at risk of a flare by flying??

Hey I know this will sound so dumb but I’m just a little anxious. I’m taking the bus to see my girlfriend in other city like 5:30h away. And I fucking forgot my prednisone at home. I’ve been tapering down I had tapered from 40mg to 5mg this Tuesday. But I didn’t really want to risk symptoms coming back over the weekend so I took 10mg yesterday and today. Should I be heading back home tomorrow? Or try to get my nurse to send my prescription to a pharmacy in her city just for the weekend? I know that cutting prednisone cold turkey should not be done. Any advice is welcomed.

I F27 am getting my first resection surgery in about 10days. They will remove the last part of my small intestine along with the start of my large intestine.

I am honestly very nervous about it all. And was wondering if anyone has any tips...

What were your experiences? Anything you found usefull? Or things you wish you had not done?

Any advice is welcome

I'm wondering if anyone else has Oral lichen planus along with cronhs. I developed a white spot on my lip about a year ago and the dermatologist froze it off. She found a little evidence of it on my inner check and said it was Oral lichen planus.

I forgot to put the medicine in the fridge and I put it in as soon as I realized after almost 3 hours. I read later that it should not be put in the fridge anymore. Has this ever happened to anyone? Any suggestions? I'm stressing myself out about this :(

Hi all. Im having some trouble working through this issue. Apparently in 2024 a law was passed affecting 19 states - of course mines one of them - requiring me to meet my full deductible (7000) before janssens copay assistance will cover my stelara 28 day shots.

The CCFA has some good info that helped me understand what is actually happening. Not sure if i can post the link.

My question to yall is, has anyone found a successful solution to this that doesnt require me to pay 7k out of pocket before i can get my first shot of the year? Needless to say, i cant afford that.

Hi all, my 3 year old has IBD (unclassified), that was diagnosed in December. She is currently hospitalized and receiving Tacrolimus and TPN while we wait for insurance to approve Entyvio (already tried and failed Remicade). She is so so miserable with severe nausea, vomiting, and abdominal pain. They have her on IV Zofran & Tylenol around the clock but nothing is helping, and quite frankly I kind of feel like her team has just given up on managing her symptoms so it’s up to me to advocate for her. I would greatly appreciate ANY suggestions on things we can try, medications I can ask for, etc. I just want to help her in any way I can because I hate seeing her so sick and miserable all the time.

Thank you all 💜

I'm taking Rinvoq and it's working great. I just completed the first 2 months on the 45mg dose. Now I'm supposed to switch to the 30mg dose. However, I'm out of Rinvoq pills and it looks like I won't get any for at least a week. There is some sort of glitch with the prior authorization, maybe because the dose changed, maybe because my insurance plan changed it's name, maybe for other reasons. I've called everyone in the chain to get this fixed, but they only say they need info from one another.

What can I expect if I don't take Rinvoq for a week, or longer? Is this mildly bad or really bad?

A

Any hacks for toilet smell when you have crohns what do you do to make your life easier

For context, I (27F) am estranged from my father and his girlfriend after nearly 5 years of their combined abuse towards me, and a lifetime of abuse from my father. I recently had bowel resection at a highly reputable hospital in NYC, which I have been under their care for 5 years. My GI and surgeon are both in this practice.

When my father found out through a family member that I was undergoing the procedure, he told his girlfriend whose daughter is a surgical resident at the same institution. She then went and accessed my records, against my will/without consent to report the status of my procedure to my dad and his girlfriend.

I know this is a hipaa violation and I feel extremely violated, invasion of privacy, considering I have never spoken to the daughter, do not know her, do not have a relationship with my father or his girlfriend. I mean what if I had highly sensitive information does that mean she gets to just report back on whatever is on my chart bc her mom told her to?

I want to take the best course of action. I’m seeing my surgeon on tuesday who I plan to inform to find out what I can do. I don’t have physical proof, but rather my aunt who was still in contact with my father at the time that he went this route to get my medical information. I’m sure the hospital can access to see if she pulled my chart up to confirm - I’m also planning to report it as a hipaa complaint, inform the institution specifically but I was also curious if I can sue? It’s a total abuse of power and I’m uncomfortable proceeding with care at this institution knowing my dad/his girlfriend can spy on me whenever he wants through her daughter.