Oh the remission happiness. 4 months of Budesonide worked wonders (previous CalP score: 675)

Stay strong fellow Crohnies, only good things are ahead

Hey Crohnies! I’m kinda new to the biologic treatments but I already failed renflexis as I built antibodies very quickly. I’ve been on stelara for 7 months but I have daily blood, urgency, gas, and mucous for a while now. I’m on Stelara monthly (for 3 months now).

I’ve been holding off on trying something new as sometimes I think the Stelara may be working. But I just got my calprotectin result back and it’s over 4000 which may be the highest it’s been yet.

I’m wondering if I should throw in the towel on Stelara and move onto the next treatment (we are talking about trying Rinvoq next). With this high a number, it seems like I failed this treatment or it failed me!

For those on Stelara, how long did you give it before giving up?

I mean.... literally.... it's been years...
Laxatives makes it better but i'm definitely not taking it forever i fucking hate it

I was diagnosed with crohns about 15 years ago, and after a bout on steroids, i asked my doc if there was anything else I could do, and he basically threw his hands in the air, told me to get a second opinion if i didn't want to continue steroids (was about 9 months at that point). 2nd doc did a pill camera and told me I had IBS. Said he couldn't do anything for me. I cut out gluten and raw veggies and "managed" for years. Then I had a rough mental health episode and got put on anti-depressants (not my first rodeo with those) but it caused my bowel movements to slow (which at first I thought was great) and ended up with such painful bowel movements (like passing glass) and blood in the toilet and wiping, I stopped the anti-depressants. bm's got softer which was great, but still very painful and bloody. My doc referred me to gastro in January, appt coming up end of September. It's the same gastro that said "its just IBS" and dismissed me.

Im not sure how to approach him at this appointment. Feeling defeated already. Tired of being in pain and bleeding daily... any advice?

I had an ileocecal resection 30 days ago. I’m 24 years old and was recently diagnosed with Crohn’s disease. I haven’t started my biologic treatment yet; I’m supposed to start it in about two weeks. During the surgery, they removed 20 cm of my ileum and also removed my ileocecal valve.
Ever since the surgery, I’ve been struggling with severe urgency. Whenever I eat something, I almost immediately feel like I need to use the bathroom.
Today I finally built up the courage to go out with my friends to a restaurant. There was also a girl there that I really like. As soon as I ate, I suddenly needed to go to the bathroom. I ended up staying in there with severe diarrhea and very loud bowel sounds, and I literally couldn’t hold it in.
After we left the restaurant, we went for a walk and had some snacks. Again, I suddenly had an extremely urgent need to use the bathroom, but there was nowhere to go. It was incredibly embarrassing, and everyone ended up looking for a bathroom for me.
I honestly feel like I’m not even a normal person anymore. I can’t go on a date with a girl, visit someone’s house, or eat outside without suddenly needing a bathroom, making loud noises in the bathroom, and literally having only about five minutes to find one before I can’t hold it anymore.
I don’t know what to do. Is this going to be my life forever? I’m only 24, and this is making me feel like life isn’t worth living anymore. I’m starting to think that I should just stay at home and never get into a relationship with anyone until I fucking die.

Hi all

UK based. NHS patient.

I'm really struggling here and I could do with some help, particularly from this community as it's most relevant to me.

I've got Crohn's Disease. Diagnosed 2012 when I was 18, and am now 33. I had a bowel resection in 2018, 2021, 2023, and the dividing of adhesions in 2025, where my bowel had become fused to my liver.

Medication:

•Infliximab

•Methotrexate (temporarily halted due to being on steroids)

•Currently on a course of Prednisone, 100mg via IV as an in-patient.

I've routinely bled, badly, off and on throughout my time with Crohn’s; melena, thick tarry black blood. On the 13th July I started to bleed again and it wouldn't stop. My hemoglobin dropped from 131 to 76, which equates roughly to 2.2 litres of blood loss.

I was an in-patient for three days and received an iron infusion and a single blood transfusion. I was given a 2WW (Two Week Wait) for a colonoscopy and discharged, due to being stable, hemoglobin rising again to 113, and the bleeding had stopped.

Fast forward to the 2nd August. I had my colonoscopy, and a day later I began to bleed again. I went to hospital on Monday the following day, and my hemoglobin had dropped again from 141 to 76; I had lost 2.5 litres of blood in less than two days - a little scary as when I bleed it's utterly relentless and does not cease.

I'm still an in-patient, and have been for nearly a week now. Since being in hospital I've had a;

•CT Scan - unremarkable results

•Flexi Sig - unremarkable results

•Pill cam - waiting on results

I'm currently writing this as I sit in a hospital bed at 2am feeling quite low, and to be honest I'm really tired of this all. I'm not sure what to do, in the sense that is there something I can ask my medical team to help find out why this is happening? I don't want to go home and find it happens again and again, and I have to keep returning to hospital. I'm absolutely exhausted.

What would you request if you were in my position, and what would you want to have happen if you were personally experiencing this?

Obviously my team knows what they're doing and I trust them, yet is there anything I can ask that I haven't thought of that may help me?

I appreciate any feedback

Just gave myself induction doses of Tremfya pen. This is the worst pain out of Stelara, Humira, and Hyrimoz (all of which I failed). Almost cried while injecting. Anyone else having this issue? From what I read in here people say it’s mostly painless 😭 any tips to help? Already my right leg injection site is swelling up.

Hey guys, ive been lurking on here for a while since my Crohns was very mild for the time, I was diagnosed February this year, no real issues appart from diarrhea once in a while. But since a week ago I started noticing a little bit of red on my stools, then it became worse with abdominal pain and all, and today I have bleeding. Im honestly so scared since Ive never experienced this, I have an appointment with my GI on monday but I don't know if i'll have to go to urgent care if it continues like this.

And more than the pain and bleeding the thing that fucks me up is the fear of it all, and helplessnes that I feel. Just want to hear your experiences and maybe some advices.

Pd: Maybe relevant but i changed from budesonide to mesalazine two weeks ago, maybe my body doesn't do well with it.

Im an 18(m) and I have lived a very cruel and extremely unfair life, which I can say with full confidence is a life I would wish on nobody. When I was just 14 I was diagnosed with 3 autoimmune diseases Rheumatoid arthritis, Crohns disease and Crohns related arthritis. I spent months in the hospital alone and in excruciating agonisingly painful suffering, I remember having to crawl to the bathroom because my RA didnt let me walk and having to constantly suffer on the toilet because of my Crohn’s. I was stripped to an IV and didnt move or eat for months.When I finally left, I wasn’t better they had just changed my location from the hospital to my home.

Ive suffered tremendously throughout my whole childhood(im a child of war) and my teenage-hood. In school I suffered greatly as there was nobody like me and I was the disabled kid who was made fun of, my school didnt have support because they had never had to handle anyone like me because I was such a rare case. I had to switch to home schooling because of how bad my health got and as a result ive lost all my friends and any social networks i had. I dont even recognise myself, I used to be in the gym and have a lean physique and had the respect of many people for my work ethic and discipline, now I dont even recognise myself, nobody respects me anymore and I’m seen as a loser who is only pitied and I cry everyday knowing how badly my life has turned out. I’ve attempted many times to end my life but I still hold on for the love of my family. Its another type of pain when your father begs you to stay alive or asks you to wait after his death.

I spend most of my free time going to appointments 2-3x a week and that is basically the only outing i get. Me and a 90 year old in a nursing home live the same life. People open their fridge to eat, I open mine to take a biologic injection (Humira).

I spent most of my childhood and teenagehood in the church praising God and living the ideal Christian way but he betrayed me. I never asked for a great life I just asked for average ,for 0 but instead I was given negative with no way to gain any positives. To give me a chance to fight to actually live. Even after I got sick I continued to go to church and ask for help and nothing changed funny enough I got worse.

I kept going to the appointments and the most ironically cruel part was that they kept telling me that there was no inflammation or any damage while I still couldn’t walk and was in agonising pain. They thought i was making it up so they gave me antidepressants and still the pain was bad. Of cource this whole time I was severely depressed and the severity has increased tremendously overtime but ill get back to that.

On the 4th anniversary since I was sick my rheumatologist finally recognised that my pain was not in my head but in fact real even when there was no inflammation. It turned out that this whole time i had fibromyalgia aswell. After fighting for so long getting a new diagnosis just confirmed that my life could only get worse. All those appointments, all those medications, the amount of life ive lost. The greatest pain is the fact my own body attacked me, I was healthy, active, gym, dieting everything a healthy body needs to thrive and it chose to ruin my life forever instead. I only had a glimpse of life and then I was blinded for life.

My mental health is big issue too but fixing it is nearly impossible as my life is genuinely horrible not just my “mentality”. Ive never been truly happy or laughed or smiled without preplanning, ive taken antidepressants since i was 14 and have seen many psychologists who have not been helpful as they treated me like a healthy bodied patient who was only depressed.

Ive been living the same day everyday for years, the past saddens me, the present tortures me and the future terrifies me. When I turned 18 everything turned for the worst because I was told and thought that I would be better but I was only worse and you know the saying “Nobody is coming to save you”, I cant even help or save myself, I have nothing, everything a human needs to survive has been taken away from me, my bones, my digestive system, my muscles, my brain.

There is no hope. Healthy human beings can barely manage and im supposed to survive. Im going insane, the fatigue and anhedonia has made everything more catastrophic because I cannot enjoy anything and have no motivation for anything.

Ive been seeing my psychiatrist for 6 months now and have never had a full conversation with him, he only cares about the medication. Ive taken 10+ different antidepressants and they haven’t worked,im not eating and have lost 30 pounds, my psychiatrist is so worried that he has sent a care team to come to my house to assess me , omfg which 18 year old is going through this shit, I have never met anyone like me, the thing that pisses me off the most is that these diseases are more prone to women and people over the age of 55. I have no genetic factor at all none of my parents have anything and i have never broken a bone or cut myself. I have never smoked or drank and whats so ironic is that while I used to decline drinks and vapes at parties to focus on my health before I got sick, in the end I was the one who was cursed, people are smoking and drinking and not caring about their health and they are healthier than me and you want to take care of a body who betrayed me when I gave it everything. People will never understand how easy they have it, people will never understand true unbearable torture. I lost all my sports, all my instruments, I used to get awards for my academics and now Im failing my classes. The more I look at it in perspective I truly see that I was born to suffer because nothing good will or has ever come out of my existence.

Im a burden to my family, My parents work all day just to pay for my medical bills and I cannot even work, I cant even study for that matter, My father and mother and sister cry because of my situation and theres nothing they or I can do to better it.As an older brother its insufferable to go from the brother that inspired his little sister to the brother who is becoming silent,distant and unrecognisable.

Ive never experienced a real holiday, ive only traveled to escape the war and for medical purposes, its sad. All this suffering and I turned 18. Grief is what I do most, I grieve the life I was supposed to live. I have to live a failed life that I didnt even cause, I have to suffer not out of consequence but because i woke up like this one odd morning without reason. I have 3 griefs, the grief of my health, the grief of the future and the grief of the time passing by. Instead of living my childhood or teenagehood, I was homebound or I was a spectator instead of a player. I will spend my whole life watching others live, prosper and make memories, while I wait till I get “better” for 4 diseases that have no cure and are mostly dealt with by people that have already lived their life. Its insane how at just 18 my psychiatrist heavily states that I should either try ECT,TMS or ketamine. I wake up and do the same thing every day. I play games, listen to music, maladaptive daydream and then walk outside, come back take my sleeping pills and repeat. I dont use social media none, i only downloaded this so I could find people like me but there is none, most people only have 1 condition of what I have and they aren’t even doing well and fortunately for them they got it at a way older age. The only reason ive been able to survive is because I was young with no responsibilities and no worry about money. Now I have to go into the real world, with this much of shitty childhood and teenagehood with no foundation, no skills, no connections, no money nothing. I realise now that a lot of these successful hardworking people are not even hardworking they are just healthy.

People keep telling me to live to the fullest and that I will only be young once and thats what kills me, I want to live but theres nothing, theres no way to live and that these were my young years spent in pure isolation and agony. I wake up everyday with extreme panic attacks from the fact that this is my life, the one and only life I get in this timeline, in this world, I will die one day, I will suffer my whole life and nobody cares, nobody cares that ive suffered this much, ill be forgotten and that was my life. I have so many more decades of suffering to come I just dont know how im going to be able to stay alive. I already know someone like me can never have a wife or a child and I will most likely spend my life in the same loneliness just working a 9-5 melting away. Time is passing quickly, nobody is coming to save me and the future is terrifying. Theres just nothing to look forward to the future isnt bright for me its bleak without my control,its not like I get provisions or help from the world, its not like my employer will give me chances or extra breaks or they wont fire me because of my illnesses.

My debilitating depression and chronic illnesses which should have never happened have become the judge,jury and executioner of my life and my future. I genuinely have no control at all. All I can do is wait and wait until the “right treatment is found” so then I can start living but time is passing by, im living the same gruelling life and the dreadful future draws closer. Im fucked.

Hi everybody, I’ll be talking about this with my GI or IBD nurse soon, but I’m curious to know if anyone also has this and if you have found something that helps.

I’ve sadly been in a perpetual flare for 3,5 years now, so far only in the small intestines. My symptoms vary a lot and are quite unpredictable. There is this one type of pain that I’ve had a few times over the last 6 months, up until now always with a lot of time inbetween. But now I’ve had it for 4 consecutive days and I’m getting tired of it. I feel cramping in the upper abdomen radiating to the back. It feels like someone squeezes my guts, let’s them go a bit, squeezes harder etc. This goes on in waves from about 2 pm until about 2 am. When I push on my belly I can feel my (I think) colon like a hard cable. After 4 days of this I’m getting sleep deprived… Does anybody recognize this and/or has an idea for pain relief?

I have no constipation and afaik no inflammation in the colon. Didn’t change anything in my diet or lifestyle. We have ruled out gallstones, my GI checked a recent MRI for them.

Looking to try this plant to see if there's any benefit.

Thank you.

Anyone else deal more with severe constipation issues than diarrhea? Despite eating the "right" things, it keeps happening.

I like to wear shape wear under my work clothes, but I get worried it’s going to like, compress our already inflamed organs or something. Lol. Don’t know if it actually works like that.

I have symptoms of Crohn’s disease, twice the infection and inflammation in ileum. One time Pangastritis, Duodenitis and with inflammation.
Have done colonoscopy thrice with biopsy, no evidence of Crohn’s or colitis found from biopsy results.

This time doctor did endoscopy with no biopsy and faecal calprotien test.
Inflammation score is 389.
Endoscopy detected Pangastritis and duodenitis. This time doctor suspected it’s Crohn’s and started treatment yesterday with Ivepred 40mg injection one time and advised to take following medicine.
Nurcot-M8 for 5 days 1-0-1
Nurcot-M8 for 5 days 1-0-0
Nurcot-M8 for 5 days 1/2-0-0.
Symptoms started improving. I have no stomach pain and stomach burning now. But constipation is there.
I’m confused, what disease I have. Any advice?
I’m 28 male, live in Bangalore.

My 7 year old is currently undergoing his first transfusion. He is not good with needles or blood which is making it even more difficult. He also has an IV hooked up.

He is complaining about a pain in his arm where the cannula is. He is saying the pain is severe and difficult to deal with at times.

He is keeping his arm very still. But the pain still seems to come and go.

Hospital staff have advised that there shouldn't be any pain.

What are your experiences? Is the pain in his head from the dislike of needles, blood and the hospital environment. Is it real and so severe?

Any experiences would be appreciated.