I’m noticing that the Instagram accounts that I follow who advocate and talk about Crohn’s are never folks who have the same “kind” of Crohn’s I have; which is not crazy to me as I know these types are rare. But I’m wondering now… where ARE the folks who have gastroduodenal/jejunoileitis Crohn’s? Y’all in here? I just wanna know that more of us exist LOL.

As always, sending lots of love and wishing nothing but easy BMs and happy guts for y’all!! 🚽🩷

For context: I was diagnosed with small bowel Crohn’s disease some years ago. They continue to find the disease only in my duodenum and the starting parts of my jejunum. Surgery will apparently never be an option for me. Just wondering if there are others out there that would like to complain with me. 😂

I just got my CT scan report and it says ->

There is a poorly defined 2.2 cm groundglass opacity in the inferior lingula.

Pulmonologist said it might be because of Crohn's inflammation, not entirely sure.

Did anyone face similar issue or does it mean my Crohn's is severe ??

Colonoscopy inflammation were noticed in terminal ileum and hepatic flexure. Symptoms - just loose stools and absolutely no pain.

A: starts at the ileum and G is rectum for reference

Not really sure what these biopsies even mean but I was diagnosed with crohns back in 2017 and was in a long remission until recently when entyvio stopped working for me a few months ago

I’m pretty sure crohns affects the ileum and spares the rectum but mines the opposite. I have a meeting with my GI in a few weeks to discuss starting rinvoq now so in the mean time I was wondering what to these biopsies sound like to y’all in terms of severity and disease type

Had this colonoscopy early April no active bleeding or ulceration was seen

I’m on Budenoside MMX in the meantime and it’s brought most symptoms down apart from frequency which is still high but hey I’ll be patient ain’t no way I’m going back to pred ☠️

BIOPSIES:

A): These are pieces of normal ileal mucosa including lymphoid follicles. There is no evidence of inflammation, granulomas, dysplasia or neoplasia.

B) to E): These are colonic mucosal fragments show crypt architectural distortion including crypt atrophy, irregular spacing and size of crypts, crypt shortening and crypt branching along with Inflammatory expansion of the lamina propria with basal lymphoplasmacytosis. Goblet cell reduction is evident. Features of activity including neutrophilic inflammation with cryptitis and crypt abscess present. Findings suggestive of inflammatory bowel disease, active disease. There is no evidence of dysplasia and malignancy.

F) and G): Inflammatory changes are slightly less than above biopsies. Amount of active inflammation is also patchy and it includes only cryptitis. Paneth cell metaplasia is also evident. Negative for granulomatous inflammation, dysplasia and malignancy.

What do you do for underwear? Kind of weird question, I know. I'm currently struggling with pain with anything that presses anywhere on the belly. I've started wearing dresses instead of loose pants, but don't know what to do for underwear because that presses too. I don't wear thongs because they are uncomfortable, I've sized up with my normal underwear to ease up, but that hasn't helped. Don't really want to wear nothing...

My dr says i need a different type of med. He is suggesting Stelara. What are any lifestyle impacts should I consider? I’m always sick now. But I’m concerned I’m trading Crohns sickness for always having a cold. If I take an immunosuppressant will I always be sick. Are they places I will need to avoid? Does it impact life or just something to keep in the back of my mind?

Ever since I got an MRI recently they switched my medication to 4.8 grams of Mesalamine daily instead of the 9mg of Budesonide before. Ever since the switch I was constipated and now I am constantly getting up to go tobrye bathroom where I release basically diarrhea and blood. I am getting up multiple times a night and day just to do this and the pain is constant.

It used to be this way before I started taking the Budesonide and ever since the switch I have been in this constant pain.

My doctor wanted me to take both before a two week follow up to see when I should drop the Budesonide but I only took the Mesalamine the past few days since. Would this be the cause?

Does anyone have daily/ chronic nausea? I’ve been diagnosed with Crohn’s for about seven years and the only time I’d get nauseous was when I was having a flare-up and/ or bowel obstruction. However, the last few months I’ve been nauseous all day, almost every day, with waves of worse nausea hitting 1-3 times/ day.

First thing ruled out was pregnancy (phew).

Now wondering if this is related to Crohn’s, and if anyone else struggles with it. If so, has it always been a symptom, or did it come on randomly long after being diagnosed? And what do you do for your nausea?

Thank you!

I've had 2 blockages in the past few weeks and my gastro says the aperture of my intestine is inflamed and therefore smaller than usual. He said it wasn't a stricture, nor did the MRI of my small bowel show scarring.

I know this is a question for him and I do intend to speak with him about it, but in the meantime should I be lower my loperamide dosage slightly before meals so I don't incur the risk of more blockages?

I’ve been messaging with my GI (IBD specialist at big university hospital), but just seeking other’s thoughts and experiences. Unless he changes the plan, I will get bloodwork and fecal cal in 2 months (3 months after surgery) and colonoscopy and MRE in 6 months. Currently on no Crohns meds bc all my crohns was cut out.

Very Long story short: prior to surgery had horrible hip knee back pain, no GI symptoms until I got appendicitis that put me in ER. I had ileoecal resection 3/27. First 3 weeks after surgery I felt AMAZING. Joint pain went away within 2 days of surgery. The last two weeks the joint pain has been creeping back. Back and hips hurt every day now, worse in the mornings.

Has anyone else had symptoms come back so fast? What testing can they do to confirm it’s crohns or not this early on? Should I be pushing for an earlier calprotectin?

Should I get a second opinion?

I won't be able to get my script filled until the end of the week, so it will be like 5 or 6 days without. I am currently in a maintenance remission. Has anyone taken a week break? Am I asking for problems?

I've been having stomach problems since December (had ultrasound, two endoscopys and recently a CT scan) most of my pain has been in the upper right area but it's been everywhere at times too.

I got diagnosed with gastritis and hiatal hernia on endoscopy but I don't think either of those are causing my problems, I have a colonoscopy coming up soon but this is what my CT scan said.

'There is a mucosal thickening with irregularity Of the sigmoid and distal decending colonic wall raising the possibility of a mild colitis. But there is little change in the adjacent pericolic wall to support this.

Faecal residue in the right side of the colon and the transverse colon consistent with mild constipation.

Conclusion: mild mucosal thickening of the sigmoid colon raising the possibility of early inflammatory bowel disease (ulcerative colitis?) or early diverticular change.

Mild changes of constipation'

So is it likely I will have IBD once I get round to the colonoscopy? The pain I'm in constantly is horrible, will they be able to give me anything for that before I'm diagnosed? What medication am I likely to get in the future? Any special diet I should be adhering too?

Any other advice? Please help.

Thankyou

hi all! currently on 6mg of budesonide for what my doctor thinks is crohns. I’m not gonna get into details i’m just wondering if i can take adderall while i’m on it? i’ve googled it and im not really getting a clear answer, advice is very much appreciated, thank you!

So today i got my stool test examination im going to show it toy doctor next week all i see is + 😂😂

I know this is a tough question for Reddit, but any input from those who are experienced is appreciated. I’m newly diagnosed a few months ago and the doctor wants to put me on Skyrizi for my first biologic. Is there anything else I should consider first? I will ask the doctor when I have a follow up in a few weeks, but wondering if some biologics have worse side effects/issues than others?

Thanks so much!

I’m a simple man. I want higher testosterone for a multitude of health and well-being reasons. I’ve briefly researched some and a popular one, Ashwagandha, is not advised for people with autoimmune conditions. I am just wondering if there are any people with Crohn’s in a similar position to me and, most importantly, what supplement for increased testosterone is safe for those with Crohn’s?

Having to go, having to take a day off from work, dealing with uncertainties regarding it, having to leave my newborn on those days, explaining it to her one day, kinda bothers me these days. I know I should be grateful that it works for me, as it doesn’t for everyone, it just does. Im also aware this biologic wont work for me forever, so thats also scary. I also take it every 4 weeks, maybe one day i can go back to every 8.

Well, after just shy of 2 years on Remicade/Avsola which brought me quickly into remission my latest lab results showed that I have developed some antibodies. I know these meds typically only work for some amount of time but I was really hoping to make it at least 5 years!

Haven't heard from my GI yet (the results came in on Sunday for some reason) but not looking forward to having to shake things up. Worst part is I still feel great! Everything under control, no real symptoms.

Mostly just venting, nothing to be done at the moment but wait. Sigh.

EDIT: just got back the drug level results and... they are actually super high! Slighter higher than last time even before the antibodies were present. The saga continues?

Hey everyone! I was diagnosed with Crohns about 2 weeks ago, and I was prescribed to take Mesalamine 3x per day. My symptoms still include fatigue and abdominal discomfort prior/during taking the medication. Has anyone had experience with Mesalamine/ did you notice any changes regarding fatigue? Thanks!

just wanted to see if anyone has any advice or if you’ve ever experienced something similar what did you do. 18F have been going through lots of testing to identify if i have crohns or not but for the past few days i have felt terrible stomach pains and last night i started vomiting, it’s at the point where i can not keep water down. I’m having a hard time passing stool or even gas and i am in so much pain. I had to call into work and have been missing at least 30 mins of class today because i’ve been in the washroom vomiting. I took some gravol and antacids but what should i do?

Crohnie friends, advise me. I changed job six months ago to cut stress after a big flare (went from management in a toxic environment to not-management in a better environment). Unfortunately my manager left a few months in. I was pressured to apply for the job, due to my previous experience, and now I have an interview in a couple of weeks. I hide it well at work, and I’m actually a pretty good manager, but I’m very shy and interviews stress me out big time. I’m still flaring and worried about this making it worse.

Don’t really know what I’m asking for specifically, but this feels like a Situation - any advice?

new diagnosee, scheduled for my first infusion of skyrizi (concurrent with an iron infusion). what should i expect? anything you wish you knew before starting skyrizi/biologics in general?

Like what is the point of anything if I can barely function on my own. I’ve been on Budesonide for a month but it’s not doing anything. Seeing the GI in June. Why is the doctor process so long and drawn out? Literally went to my physician beginning of this year and the closest appointment I could get for my crohns is in June. It’s not so much the pooping that bothers me but the intense pain in my stomach, where all I can do is just sit/stand wherever I’m at and endure. It’s a constant pain 4/5 all day and flares up to ten at least maybe three times a day. It’s all so tiring. I just wanna live a normal life. I still persevere at work somehow.

Just ranting. Crohns sucks. (Not gonna act on the thoughts just putting this feeling into perspective)

.....Cause it reduces the inflammation and the colonoscopy can't detect those inflamed areas????

Just trying to vent out here but I actually sharted myself while I was out with friends (not really my friends only one guy is kind of) and now they’re making fun of me every time in third person. It’s going to be an embarrassing moment every time I talk to them now. They do it in a way Hate this so much.

Hi everyone, this might be TMI but I figure this is the place for it. I was only recently diagnosed in December, and mid March I had a perianal abscess that landed me in the ER needing drainage, and a seton placed due to a fistula. I had my first menstruation 2 and a half weeks after the surgery and honestly I would barely call it that. It was really weird and almost non existent. The time has come around again and I’m having the worst cramps and seem to be having a lot of blood and blood clots - way heavier than my usual cycle before the surgery.

Just wondering if anyone else has had heavier than usual periods post surgery or if I should be concerned? I guess I worry because I’m very anaemic and haven’t been able to start iron infusions for that yet, losing any amount of blood stresses me out. Lmk your experience!

I’ve recently been diagnosed with crohns, and while i’ve been waiting for my infusion to arrive, the only thing i can really say helps the pain and stress caused by crohns is marijuana. Is this entirely mental? Or is weed good for helping crohns during a flare? Also what other home remedies could I use, as well as what over the counter medication help too?

Hey everyone,

I’m becoming a frequent poster in this subreddit, and I’m back with another question(s) that I would love some insight on, (I know you aren’t doctors lol)

I was in the ER a little over a year ago because I thought my appendix was bursting - this is what the CT scan found:

“Mild-to-moderate distal small bowel enteritis with diffuse colitis”

I didn’t take any meds for this condition, and a week later my symptoms were gone. I had a normal sigmoidoscopy, as well as normal blood and stool tests, (CRP, SED rate, calprotectin, CMP, etc). Although my parasite and bacterial infection stool tests were normal, my doctor presumed it was an infection / food poisoning that caused the abnormal CT scan.

Fast forward to March of this year, I had a normal colonoscopy AND normal biopsies, including biopsies of the terminal ileum, (waiting for insurance to approve a capsule endoscopy).

My questions: does the clean colonoscopy with normal biopsies basically supersede / negate the results of the CT scan? Wouldn’t the colonoscopy / biopsies be able to determine the cause of the bowel wall thickening, (especially the colitis since the entire colon is examined)?

I have been dealing with a really bad dry and red rash on my face for the past month. I am assuming this is due to my new treatment of Remicade. How have people in this subreddit dealt with this? Any products or tips I should try out? Thank you

Hey all, I'm relatively new to this whole Crohn's thing. I have severe constipation with mine. I recently started Biologics, specifically Humira and would like to hear from some of you about your experiences and what to expect. Firstly, I've been having injection site reactions the past couple injections - the injection site welts and gets red and itchy in the nearby area. This usually is the case for 3-5 days following the injection. How common is this? At what point do I say something to my doctor? Secondly, my doctor casually mentioned that I would likely be on it likely the rest of my life or until my body starts to develop antibodies. Were any of you able to achieve remission and able to maintain it without biologics or is it really a lifer med? Thirdly, my doctor said it would be safe for pregnancy. I'm not currently pregnant but would like kids in the next five years. Have any of you been pregnant while on biologics? Any complications or things you noticed? Any information on IBD with pregnancy would be lovely really. Lastly, how do any of you manage the fatigue and joint pain? I think that fatigue is Crohn's related and the joint pain didn't start until after I started the gummies Humira. My doctor did warn me that it might cause arthritic pain though.

Thank you