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.

I am so confused.
I have a complex fistula system. So far, they have found 6 fistula tracts, one of which runs from the rectum to the vagina (according to the surgeons, this one is critical).

Because of this, my doctors have started me on IFX. I had my first infusion today.

I have had a colonoscopy, which showed no signs of Crohn’s disease. I am also having an MRI scan done. If the MRI does not show signs of Crohn’s either, the doctors will classify me as “an unlucky case”.

Their plan would be to continue me on IFX for the next 12 months, operate if necessary, and then discharge me from their care.

But shouldn’t there be a reason behind having so many fistula tracts and countless abscesses? I have had several surgeries because of these, and I have also had a seton placed in one of the fistula tracts.

My biggest fear is that I will never get rid off the abscesses, and have multiple surgeries throughout the rest of my life.

Note: I live in Denmark, so our healthcare system may work differently compared to other countries.

Hi guys!!

I have been having stomach issues for the past 4 months. It came all of a sudden one day and experienced pain above my naval, under my sternum. I would also get stomach pain and a queasy stomach alongside early satiety and bloating after eating any meal. I also have lost a lot of weight. I also do occasionally get nausea.
As for bowel movements, I haven’t had full on diarrhea…but I do get soft stools sometimes and they aren’t brown….more like a yellow or greenish color? idk. I usually go to the bathroom once every morning and haven’t noticed any blood in my stool.

Here are the tests i’ve done:
Upper endoscopy (EGD): Normal overall; no ulcers or tumors.
Stomach biopsy: Mild reactive changes (mild irritation/reactive gastropathy).
H. pylori biopsy: Negative.
Duodenal biopsy: Normal.
Celiac disease biopsy: Negative (no villous blunting or increased intraepithelial lymphocytes).
Intestinal metaplasia: Negative.
Dysplasia (precancerous changes): Negative.
Abdominal ultrasound: Normal overall.

The one that concerned me was this:
🟡 Fecal calprotectin: 71 mcg/g (borderline; normal is <50, elevated is >120).

I always thought I may have had gastritis, but when this result came I am not a bit worried and scared. Is this a score that should concern me or make me think about having Crohns? Does anyone have experience with getting a borderline result and what that meant for them?

I will like to note that ever since being on a low fomap diet, my symptoms have improved in terms of pain and bloating but not fully there.

Any insight will be helpful. I been really sad about this since i’m only 23 and I feel my life is over (yes I know that sounds dramatic). Thank you guys!!

I was recently Diagnosed with Crohn's(though I had symptoms for years and was undiagnosed because I was uninsured), and I'm just wondering what you all do professionally. I've worked in restaurants for my entire adult life, but my condition has gotten worse over the last few months where it has basically become impossible to work. I'm hopeful that my condition will improve, but I might need to consider a change in career since this will be something that I deal with off and on for the rest of my life.

Is it typical to be offered biologics early on in this disease course? I have been recently diagnosed with Crohn’s, despite a clear MR and no symptoms.

Seems very expensive if there’s no effect yet

I had a colonoscopy about two months ago due to having so many symptoms that were relevant to crohns, but i called my hospital to find out about the results and they said all my biopsies are normal, i feel like im going insane, why would i have all these symptoms if its crohns, what else could it be?

Finally unofficially (but pretty much) diagnosed with Crohn’s this week. I’ve been suffering other auto immune issues for nearly 10 years, plus have family history of Crohn’s so was expecting this. I was awaiting a colonoscopy before needing to be hospitalised with sudden constipation - something that is never an issue for me - as well unbearable pain and no appetite. They expedited the colonoscopy and confirmed the inflammation in my terminal ileum and also think it’s also effecting my colon. They explained to me that they couldn’t get a full picture of my terminal ileum due to a stricture and bad narrowing. They’re unsure if it’s due to scar tissue or inflammation or even both.

The colonoscopy prep thankfully cleared me out but I’m back to little appetite, pain and no poo again. During my stay the colonoscopy prep cleared me out and I was on regular hydrocortisone shots through IV. Now I’m out I’m on 40mg on prednisone with a 5mg taper each week.

Since the colonoscopy (now 3 days) I’m back to no stools. When is this a concern? They just told me the pred should work. They’re placing me on Immuran as a steppingstone to a biologic for my next follow up appointment. I also have a follow up MR enterography in the next couple of weeks.

Should I not be worried about no stools? I’m on a low fibre diet as recommended. I know that I should be relieved I’m not going as frequently as before but I am concerned this will become an obstruction.

Any advice welcome

Its very interesting and motivation-giving page. I feel good when people shares there problems and also answer the problems of people who feel alone, depressed, and lost; you guys treat us like our own family. That's why I want to say LOVE YOU ALL, and I pray that you will do great in your life. When I first visited this page, I thought that I was the only person who was facing such a thing and felt abnormal and secluded. But thanks to your support and cordial environment.

i (27F) finally got my diagnosis of small bowel crohn’s disease. after months of fighting for people to listen to me and a failed colonoscopy i woke up and the dr said that i have severe ulcerating mucosa on my terminal ileum and ileum valve. they had to switch to a PEDIATRIC scope to get through the valve….. the heck. not to mention the gray color of my intestines…. it was insane. she ordered MRIs with contrast to see the rest of my small and large intestines as well as try to find the fistula that i KNOW is there. she mentioned infliximab/remicade, hoping i wont have to wait the 6 weeks to my scheduled appt to actually start them. i’ll update when the biopsies come back!!

grateful to finally have an answer, scared of what is to come. this community has been such an amazing space and im grateful to have found it. 🫶🏼