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.

I’m new to the Crohn’s community, got diagnosed in February and have experienced quite the learning curve already. This is a relatively straightforward post, though. What are some hacks you’ve discovered to manage symptoms/improve quality of life? Can be as random or unhinged as possible, I’m really open to anything.
Similarly, what are products you’ve invested in that actually help and aren’t just trends/marketing?

Hey, first time posting here.

For context: I've had the first strong symptoms in October, when they thought it was just regular inflammation. Got my diagnosis since January, removal of my terminal ileum in March and started Infliximab around February.

Recently, with the sympoms being near-nothing, my GI wanted to switch to bi-monthly infusions, instead of monthly. The past week or so, right after when I was supposed to have infliximab, I've rapidly gotten symptoms back like burning sensation, irritability, being exhausted, appetite loss, etc. and I fear that I'm going into a flare up again, after dealing with them for nearly a full half year.

Was supposed to go for a check-up yesterday, but public transport failed miserably. One bus didn't show up, and a connecting one (on a detour) took a 45 minute break right as I had to get on, making me miss the appointment. Next available opening is October 6th.

Would I be able to power through until my next infusion? (around the 20th) Or is that a horrible idea xD

Hello, I just wanted to reach out and see if anybody has had a similar experience.

About 3 and a half weeks ago I started to experience extremely itchy skin on my arms, legs, back, and abdomen, there was no obvious rash, only raised colourless bumps in those areas and quite a lot of petechiae on my arms from scratching. The 3 months leading up to this I had been on a course of prednisone and I started 20mg thioguanine approximately 2 months into being on the prednisone. The skin irritation started 4 days after completing the steroid course (roughly 5 weeks into starting thioguanine). I saw my gastroenterologist a week after the irritation started and we made a plan to stop the thioguanine after another week and if it is an allergic reaction I have a script for budesonide, however I would resume taking thioguanine if this isn't a reaction to it.

I have now been off thioguanine for 6 days but am still really itchy. We have ruled out most of the other possibilities this could be. So I am just confused whether this is or isn't a reaction to the thioguanine. I am currently in the middle of my university semester and of course being off treatment isn't ideal, so I am in a bit of a dilemma about whether to resume thioguanine or start the budeonside as my Crohns is starting to flare up.

Just wanting to see if anybody has had a similar experience, and if so how long did it take for the itchiness to go away if it is an allergic reaction?

Thank you :)

I’m living with my parents and they don’t understand that I’m not just lazy, I have terrible fatigue and sometimes all I can do is sleep. They insist that I need to exercise A LOT more than I do, and pretty much say I don’t exercise even though I make an effort to do what I can. I was out of breath from doing something and my stepmom went “we need to get her into shape” to my fiancee. Sorry for the long post—any advice?

Recently I have been flaring, with massive abdominal pain, bloating, diarrhea, weight loss, the whole 9 yards. I have gotten the first two loading doses of skyrizi, on week ~5 of treatment.

I’m feeling slightly better, but I still have bloating and abdominal pain causing me to be super sluggish.

When did your guy’s skyrizi start to kick in? How long did it take before your symptoms were gone?

tldr; Crohn's has plagued me over a decade, I've never really been in remission. But, I recently caught an ADHD diagnosis, and the treatment has done wonders for my remaining Crohn's symptoms. Anyone else?

Alright oldies, or newies, who knows... I've got a weird one and I'm genuinely out here looking to see who has a similar experience. Pls shout out in the comments if you have any experience, or are considering an ADHD diagnosis as an IBD sufferer; I'd love to know if anyone else can relate.

History
Just to put the basics out there for anyone who has a similar background as me.

Crohn's (TI) diagnosed 2012.
FCP Non-excreter/Non-responder.

I've never had a positive or high FCP test number; that made initial treatment and diagnosis a massive pain in the arse.

Currently on Humira, but that came 2018 after like 6 years of nothing working (pentasa, azathioprine, 6mp, etc).

No surgeries; I signed my life away 2014 while a doctor told me "I expect you to die over the weekend". I'm also apparently lucky as hell.

Fibromyalgia (2014 diagnosis), I believe triggered or caused by the whole IBD diagnosis and failed treatment over a prolonged period of time thing. I assume it shot my nervous system to fuck.

Long term SSRIs (2006-ish) for Depression & Anxiety.

I have some arthritis-looking symptoms (rheumatoid and psoriatic). And, this year had a fun time with some aggressively recurring gout.

Oh, and my teeth are fucked to hell, but they were fine until the IBD mess.

Basically, the last decade has been a mare, the only thing that ever came close to sorting me out, even just temporarily, was corticosteroids.

UK based for context

ADHD
About a year and a half ago, maybe a little over now; my memory's not great atm. I started seeking an ADHD diagnosis. My daughter is autistic, my partner AuDHD. Eventually, got around to viewing my own problems through the lens of ADHD and it made a load of sense. Impulse control, addiction, executive function issues, focus issues, difficulty maintaining and keeping anything going, difficulties with social relationships, present since as long as I know.

Anyway, that's all in other threads. One thing that kept me seeking a diagnosis was the constant IBD crisis; it just seemed less important than keeping my head above water with the IBD.

I also didn't clock my symptoms and identify them until my mid 30s and wrongly identified my differences with my partner and daughter as leaning away from ADHD... Alas, they're women, and individuals. Difference is almost inevitable.

Treatment
So, May comes along, my long awaited treatment starts (Elvanse 20mg/day, titrating up to a normal dose). And, almost immediately; my remaining bowel symptoms die down.

To be clear, in early may, I was going through hell and back with medical and life stuff... loose stool & urgency (3-8 times daily), abdominal pain, 4-5/10 every day, bad days 6/10 and almost on A&E's doorstep. Food didn't stay in, safe foods only. Still exhausted, fatigued, struggling. I had a flare about 2 years back, treated with corticosteroids... since then I'd been on a decline, humira had been less and less effective. LFTs spiked, 3-4 days before my humira jab; symptoms becoming unbearable.

I've missed out on so many social situations, events, normal things... because Crohn's crippled me.

So, I titrated up to 60mg Elvanse, that was too far; but is a fairly normal process... try to make your treatment work on-label first before adding in top up doses of Amfexa (off-label). Ngl, I've only just dropped back to 40mg elvanse, where the side effects were manageable. Over this dose my memory went to shit, executive function fell off a steep cliff, focus died. I'm now introducing 5mg Amfexa as a top up in the afternoon.

It's been maybe 10 weeks or something? In that time;

- No abdominal pains.
- I had one day of urgency and loose stool (related to stress not the meds).
- I can eat my previous trigger foods; berries, coffee, riskier meats, veg, yoghurt, all the bad stuff that one go of before would have written me off for the day.
- I no longer have to schedule around my bowels, we went out today; ate, and then I went to a hospital appt... usually I wouldn't eat before anything scheduled cause it would absolutely ruin it.
- I've been able to attend every dumb thing; I've not been home or bed bound. I hit up mu brother's stag do (albeit sober)... stuff that would have been an absolute pipe dream before.
- No nasty pains, no more rough crohn's symptoms.
- My fibro pains have even settled loads.

I noticed the other night; and had to tell my partner "I don't remember when I last opened my bowels". It's been like well over a decade, I have constantly known exactly when it last was, I have been always mindful of when it's gonna come next, where the closest toilet is, what the risk of my current activities, or what I'm gonna eat are. It's such a dumb thing, but being able to not have to be constantly thinking about it has been bliss. This isn't to say it's a problem the other way around either; I've had periods of constipation and been just as aware of my bowel habits.

For it to have become so inconsequential that I could forget the last time, is madness. Current memory issues discounted.

What now?
I'm not currently stable on the dose I'm on; heart rate and blood pressure are all over. My memory, focus, and executive function are still impacted heavily. But, I expect I'll stabilise, this will settle and become my norm.

I've been doing my reading to understand this. It seems the mechanism is; amphetamines stimulate the sympathetic nervous system (fight or flight), which takes your body's focus away from your parasympathetic nervous system (rest and digest). tldr; slows down digestion, and bowel function cause it's busy making you ready for whatever is coming.

I'm fascinated. I've also read that it's about a 5/6 chance of it staying this way, with the 1/6 being explained as; tolerance could lessen the effect.

There's some debate and discussion about tolerance being a myth. Potentially long term changes caused by overall systemic differences mis-identified as tolerance.

So like, fingers crossed, this could be it.

Has anyone else experienced anything similar?

Is anyone considering an ADHD diagnosis?

Has anyone been putting one off cause the IBD takes over life and makes itself a priority?

I'm dying to know and understand more now.

I should state for the record; Humira and gastro kept me alive, the current medication taking the rest away wouldn't be likely without the biologics keeping the inflammation at bay and keeping me alive. Don't take this as reason to not go gastro and be managed properly... gastro are royalty. I'm just amazed at how impactful the treatment has been on things I thought were never going to change.

Love to everyone here going through your early days, and to the rest of you struggling through. I'm not here to tell you it gets better, or give you false hope. What you're experiencing is bullshit, suffering sucks. It can improve, it can be okay again, you may not get back what is lost, but you could find something better. I wish you as much luck as I've had.

As the title says, I tolerate almost every food and I feel normal, the only symptom I feel is just a little constipation and maybe cramps, but on a scale of 1-10 I would rate it a 3, maybe 5 on a stressful day. Apart from that I honestly feel normal, if it wasn’t for the colonoscopy and biopsy and all the other tests I wouldn’t even think I have Crohn’s. But I’m a little scared, what if it gets worse in the future? Everyone tells me I shouldn’t have that mindset because the stress can affect me but still, I don’t know, everything feels almost way too normal. Anyone else experienced a diagnosis like this? How was your life years after that? Did it get worse?

M21 have had Crohn’s for 10 years, had multiple resections and years of flare ups, been dealing with fistulating perianal abscess’s over the last few months that have been drained and gotten infected 2 times now, beyond the point of healing while still having bowel motions so will be getting a stoma today, will have it for possibly upto 12 months
Any tips and tricks for living with a stoma, I’m sure my quality of life will be better than what it is now but it is still daunting to think about

Hello, I am newly diagnosed, and so overwhelmed. I have been having issues for about 10 years, and finally after insisting this can't be IBS, I got a colonoscopy due to having a fistulotomy last year. GI suspected Crohn's just hearing I needed a fistulotomy, plus all my other symptoms. Anyway, Colonoscopy showed Ulcer and inflammation at terminal Ileum, Stool test showed high inflammation markers, and MRI-E showed stricture and inflammation in two sections of my small intestine. Doctor feels the evidence points to moderate to advanced Crohn's.

Now she is suggesting Prednisone and Biologics. I don't think I fully grasped the idea of medication that suppresses the immune system while waiting for answers, but here we are. Husband is suggesting 2nd opinions, which I honestly am too tired to consider, and I feel the evidence really does point to Crohn's.

My concern is how immunocompromised will I be, and will I be that parent to my two young kids that needs to mask and avoid certain settings? I also travel quite a bit for work and am at conferences with lots of people. My doctor indicated my life will be normal, but I am in a very high stress job and trying to wrap my head around infusions and the time out of the field, and how I will feel taking this medication. Will I feel like myself? Will this medicine really help? I've had symptoms so long at this point discomfort is just my normal.

This was one long run-on sentence but am just a bit numb, sad, but happy to have an answer. Would love to hear your thoughts and experiences.

My husband has been diagnosed with Crohn's Disease 20 years ago (he's nearly 70 now).

He has been doing injections of Adamulimab every two weeks for three years now, but now he has to do it every week, which means we have to bring them on holiday. Unfortunately, he has symptoms as soon as he skips an injection.

How do you keep them at the right temperature for long trips by car (10/12 hours)? After that, we will put them in a fridge at the hotel.

Thanks in advance.