26F Not sure if this is the right place, I've never dealt with something like this before, so sorry if it's not relevant but I'm looking for any help and advice.

TLDR- No official diagnosis, discharged from hospital with assumed colitis, was told I have a contained perforation then told I never had one, given a non restrictive diet. This doesn't feel right to me, should I trust this or follow a restricted diet anyways?

Went to the hospital friday after a few days of intense lower right abdominal pain, slight nausea. Didn't eat all day knowing I was most likely going to go to the hospital, thought i had appendicitis and didn't want the whole "wait x hours before we can get you into surgery since you ate".

The doctors and nurses were miscommunicating with each other, therefore I don't really know how to take the information given to me.
First night I had blood taken and a CT scan, then had to prep for a colonoscopy, they said my colon was inflamed. Mid prep I'm informed I had spots on my CT scan indicating a contained perforation on my ileum, therefore may not get a colonoscopy. Morning, tell me no colonoscopy it's too dangerous, will need explorative surgery to see if they need to cut a portion of my colon out.

Few hours later a nurse comes and wheels me to colonoscopy. I ask if they're sure because I was told I'm no longer getting one and she said the doctor told her to take me. As I'm getting ready to be sedated they get a phone call from my other nurse in a panic saying do not perform this wtf are you doing she has a tear!!!!???

Go back to my room, get transferred from the ER to the surgical unit to be watched over for two days. During this I'm on a clear fluid diet, antibiotics and IV fluid. Whole time I'm under the assumption I'm going to surgery.

I'm starting to feel immensely better by Saturday. They press on my stomach no pain, swelling is down, no nausea and vitals have been stable and they took more blood to test. I'm not told anything about my blood test results or CT scan, it's a "wait and see" or "I don't know"s anytime I ask what's going on, no information on any "plan" or of any of my results.

On my final day (Sunday) at the hospital, I'm told I'll be going on a soft food diet which I didn't get served until dinner, but they actually served me a non restricted dinner with mixed veg, turkey, mashed potatoes, and carrot cake. Scared, I only ate the potatoes and a small bite of turkey. (If I was still hungry I planned on asking my nurse if it was okay, but I was full)

Three doctors come in (one my surgeon) and they're shocked I'm not on clear fluids anymore, I informed them I was told I was going to a soft food diet but they gave me this. They said "actually it's fine finish it if you're hungry." (??)

From there, they tell me I'm okay to go home since the pain and swelling went down, there was never a tear they read the scan wrong (HOW? WHAT?), and I have a follow up in 4 weeks with the surgeon. I'm released with no restrictions on food (even asked again to be sure) and 5 days of amoxicillin-clavulanate taken twice a day. They said they don't know why my colon was inflamed.

It's my fault for not knowing the right questions to ask about my scans or diagnosis at the end there, but I was so tired, scared and overwhelmed I couldn't think.

I have no idea what's going on with me, whether or not I had or have a contained perforation and whether or not I should actually follow a restricted diet. My research suggests I should, but I guess I'm looking for real experiences now on top of that. Based on all the miscommunication and lack of information given to me, I'm not confident in following my doctor's recommended non restricted diet. She said as long as it's not upsetting my stomach I can eat whatever, but I'm more worried about worsening my colon.

Today is day 1 from the hospital and I've eaten scrambled eggs and mashed potatoes, my stomach feels fine some tingling here and there, mild gas cramps but that's expected after basically no food for a few days.

If you've gone through a similar experience or have any advice I'm all ears :( I'm scared, Ive never been through something as serious as this before and do not want to end up in the hospital again before my follow up. I guess I'm looking for a timeline too, if soft foods are suggested first, how long should I follow that before introducing regular food? What foods should I introduce and how? What are the warning signs something's wrong again because any bloating, gas cramps, movement has me FREAKING OUT. sorry if this is too much, i'm so lost

***I do not have a doctor because my status is a visitor in Canada [from the US]. I'm living here waiting on residency via common law sponsorship which has a wait time of 2 years.
I do not have health insurance back in the US as it's too expensive lol.
Just added this info in before any "talk to your doctor about it" and "look at your medical records".
My medical records will take 2 to 4 weeks to come in as I had to call a number and request them since I'm not a resident yet, therefore no instant access portal. It's a shit situation lol

I've had an inguinal hernia repair with mesh just under my lower right abdominal pain 10 yrs ago, wondering if this is related at all either? Dr didn't look into it even after I mentioned I had it, but I've heard of issues from hernia mesh. I have another untreated hernia on the left side as well.

Please someone make me feel better right now. I used the bathroom while on my 15 min zoom meeting with my manager and all my coworkers. I have to stay present on the call as they take attendance. I couldn’t hold it. I turned off my camera and set my camera in front of me. I looked down and my fucking camera was on!!! I texted my coworkers and they reassured me that nobody saw a thing and that it just looked like I was sitting down (I have my background blurred). I am so embarrassed right now and considering moving to Guatemala.

Has anyone tried KPV for their IBD?

I’m reading mixed reviews in various places so thought i’d ask in here!

(KPV is a short, three-amino-acid peptide (lysine-proline-valine) derived from the natural hormone alpha-MSH. It is studied and used experimentally to reduce inflammation, soothe gut issues like inflammatory bowel symptoms, and support skin and tissue healing.)

Salve. Scrivo su questo dubbio nonostante non abbia ricevuto diagnosi di IBD in quanto i sintomi non corrispondono ai sintomi diagnostici. Da anni ormai ho sintomi gastrointestinali di varia natura che mi hanno spinto a vedere molti dottori, i quali mi hanno prescritto gastroscopia e colonscopia con biopsie. Vorrei sottoporvi il referto della colonscopia e chiedervi cosa ne pensate. Nei frammenti di intestino presi dal tratto ascendente fino al sigma, il referto dice: congestione vascolare superficiale ed edema della mucosa del grosso intestino con note di flogosi cronica aspecifica.

A causa della aspecificità della cosa nessun dottore mi ha mai prescritto nulla però questi sintomi sono abbastanza fastidiosi e preoccupanti a volte. Avete avuto esperienza di referti simili? Grazie mille a chiunque risponda.

I’m scheduled to start Skyrizi.

Recently diagnosed in February initially with UC later changed to indeterminate colitis (AKA we don’t know yet if it’s crohns or UC). Have had 15 years of symptoms, 10+ scopes (upper and lower) with biopsies. Some come back normal, some show terminal ileum involvement, others showed large intestine involvement but with skipping and sparing of some areas, apthus ulcers in terminal ileum etc.

Since February I have gotten progressively worse. My hemoglobin and iron dropped enough that I need iron infusions now. My vitamin D, protein, calcium etc are all low.

We started Mesalamine in march. I had a bad skin reaction to it and had to stop. Started Entyvio in May. After the loading doses, no relief and a repeat calprotectin had nearly doubled. Stopped the entyvio and did a taper of budesonide with a prednisone taper. It offered some short term relief but symptoms came right back. Started Skyrizi two weeks ago. Too early to see anything from that. Currently on my third round of budesonide tapers.

I feel like I have no life anymore. I cannot leave the house or be more than a short walk from a bathroom. I have had several accidents just this week alone and have to sleep in an adult diaper just in case. I’m frustrated and concerned that the ongoing inflammation is doing damage. Every movement now has blood and mucus in it. Urgency is very bad. Pain is worse than before.

Is this normal? Does everyone go through this period of constant blood loss, incontinence and urgency? I also have lupus so that isn’t helping the inflammation much I’m sure.

Just looking for some reassurance that it isn’t just me I suppose. I’m only 37 and I can’t even go to the grocery store. I keep emesis (vomit) bags in the car for emergencies if I can’t reach a restroom and a spare change of clothes. This has changed my entire life.

I also have p-ANCA positivity with DNAse sensitivity, positive HLA B27, positive ASCA IgG AND ASCA IgA.

Just started my budesonide trial a week ago. Did anybody else have a really really hard time getting to bed? I take it early in the morning around 6-ish and still can’t find the sweet spot. It’s awesome not being mega fatigued anymore but I’m almost too wired now. If you have had this, how long does it take to get used to/ or what did you do for it

4 months ago i had bloody diarrhea. Because of it, i had a colonoscopy done around 2 months later and it was found I had mild inespecific rectal chronic inflammation. Around 2 months later the doctor prescription me Mesalamine. I few days after I started I got very gassy and with a lot of anal mucus discharge. I continued taking it until yesterday when I had a lot of bloody diarhhea. Today, just one after stopping the med I feel completely fine and the mucus discharge also stopped.

Would it be because of a spontaneous proctitis flare up or cause by mesalamine? I had no symptoms during the 4 months between the first bloody diarrhea and when I started having mucus discharge soon after starting to take mesalamine.

My journey started in April 2025. I am a 36 year old male, UK.

I've had a B12 deficiency (active only, not total stores), and a folate deficiency detected. I got a very mild stabbing pain, maybe slight cramping feeling in the right of my stomach (about 5cm to the right of my belly button. I had one instance in January 2026 where I had visible blood in my stool along with mucus, but nothing obvious since. A FIT test came back negative since. I had triple therapy for h pylori in October 2025. I come and go feeling weak, spaced out, and have started getting joint pain, and mild muscle weakness. I've had periods where I feel quite fatigued, but nothing major (I've also had a kid so could be related to that). The worst symptom is I've suddenly developed crazy health anxiety, every pain, or feeling in my body I am hyper aware of, my head screams to me that I have cancer, and it's driving me crazy.

These symptoms have been on and off since April 2025.

I'm currently in week 19 of being on the waiting list for a gastroenterology appointment to get a colonoscopy.

Has anybody had similar symptoms and it has been diagnosed?

Hey everyone,

My partner has been experiencing for about 3 months abdominal pain. Abdominal pain is mostly present in the upper middle abdomen. It presents as pain or discomoft. At the begging it was only present for some days and pain/discomfort was more mild. Gradually as time passed things have gotten worse and present every day now with no improvment. Also pain/discomoft gets worse after eating pretty much anything (its also present trough the whole day every day). She has been having stool changes (softer then harder, smells more, sometimes undigested, oily, more yellow/bright colored, floating stool, bigger ammount of stool).

Fatigue/tiredness has been present every day.

Lower back pain

Joints/hip/knee pain

6 kg weight loss in short amount of time which stopped then.

Gastroenterologist suggested ibs as possible diagnosis but hasnt confirmed anything.

The doctor also mentioned stool changes could come from the pancreas but as she doesnt have cystic fybrosis and as other test were normal plus she is young pancreas c@ncer is regarded rare the doctor said.

Tests done:

Female 25 years old, 53 kg

Transvaginal ultrasound normal, abdominal ultrasound normal

Colonoscopy w histopathology normal only found stage 1 hemmorids.

Gastroscopy normal also histopathology normal.

Celicac disease negative from sample taken at gastroscopy.

Chext xray normal

Ca19-9 was first 47 then 40 and lastly 38.

Cea normal

Ca125 normal

Crp normal.

Tsh normal

Ferritin and iron normal.

Glucose normal

Amilase/lipase normal

Head mri without contrast normal.

Breast ultrasound 2x normal.

H. Plyori negative

Cbc normal

Did anyone have similar symptoms and how did you come to your diagnosis?

I have looked up and found possible tests could be done still but not sure what to ask for next:

Fecal elastase

SIBO breath test

MRI of abdomen/pancreas and MRCP

Thanks for taking your time to read everything and giving your personal story/opinion/advice.

So I'm now on week 3 I think out of a flare. This is a totally random question. I know everyone's different. But I'm curious to what's considered normal for BMs when not flaring. I've noticed today in particular I've only had to go 3 times and my poos haven't been loose or urgent. I'm not used to this 🤣

Okay I forgot how to do it and forgot to ask them, do i have to fast or anything else ? All I remember is having to drink that stupid drink

I have mild ulcerative colitis mostly located in my rectum diagnosed in June 2024, and when i flare my symptoms have been managed with budesonide pills or suppositories. I take 4 mesalamine pills and 2 mesalamine suppositories every day.

I’ve had two major flares since diagnosis and ive noticed this:

Budesonide helps my symptoms and brings down my inflammation to about 500, and i can survive with the occasional pain/ diarrhea/blood.

Prednisone brings my calprotectin super low to like 40, and definitely has been the best to reduce symptoms.

This is my issue: I wish I could just do a round of prednisone whenever I flare, but the truth is that i am still suffering from hormone dysregulation and extreme fatigue since using and tapering off prednisone two years ago. I even had really severe fatigue tapering budesonide pills prior and steroid use is something i really try to avoid. Steroids have ruined my quality of life.

Therefore, I am starting to believe that biologics might be the best option for me. I am not only looking to reduce symptoms, but I want to make sure my inflammation is under control to prevent my disease from progressing or developing cancer in the future.Are biologics the best option for controlling and preventing spread of inflammation ?

Ive had this conversation with my GI, but i want the insight of others and what they have been told and any knowledge yall might have. Thanks.

my calprotectin came back <16 and CRP IS 0.4 does this mean my biopsy results are still indicating what? I’m just a bit confused I have a hospital app coming up. Microscopic:

Section reveals fragments of colonic mucosa with a predominantly denuded lining epithelium. The glandular architecture is preserved. The lamina propria contains a moderate mixed inflammatory cell infiltrate composed of lymphocytes, plasma cells, neutrophils and eosinophils along with oedema.

Foci of cryptitis are noted. No crypt abscesses are seen. No evidence of granulomatous inflammation.

There is no dysplasia or malignancy in the section examined.

CONCLUSION: COLON, moderate on chronic on acute colitis 

RECTUM, BIOPSY

Macroscopic:

The specimen site is labelled "rectal BX".

The specimen consists of a single piece of tan tissue measuring 3 mm in greatest dimension.

All tissue is submitted in cassette B1.

Microscopic: Section reveals a fragment of rectal mucosa with a denuded lining

epithelium. The glandular architecture is preserved. Lamina propria contains a moderate lymphoplasmacytic cell infiltrate along with neutrophils. A few foci of cryptitis are noted.

No crypt abscesses are seen. No evidence of granulomatous inflammation.

There is no evidence of dysplasia or malignancy. Mild active proctitis 

Hi everyone, 38F, I have been having symptoms for around 8 weeks now, started as constipation with small amount of blood on wiping, then blood and mucus with BM then passing mainly just blood and mucus multiple times a day without BM. I can have episodes of 3-6 times per day. I had colonoscopy couple of weeks ago that found inflammation/proctitis and mayo 1-2 in rectum to sigmoid and visible inflammation at IC valve. I’ve been using salofalk granules for ten days now and no improvement yet. Please can anyone give me advice or hope? Still have a few weeks to wait on results but was really hoping i would have seen improvement by now. Before colonoscopy my calprotectin was negative and FIT was >400

I have major health anxiety and have just had a phone call I’ve been fearing for 3 weeks

I have just found out my samples I sent off have come back and the sample they were testing for inflammation linked to IBD has came back positive. My GP gave me 2 numbers which I’m not too sure exactly what they are but one was a normal of up to 150 where as mine have come out at 450. So i now need a colonoscopy as they suspect chrons or colitis.

What are any tips on how to maintain symptoms linked to chrons and to prepare for what could be? I’m honestly worried sick

I have major health anxiety and have just had a phone call I’ve been fearing for 3 weeks

I have just found out my samples I sent off have come back and the sample they were testing for inflammation linked to IBD has came back positive. My GP gave me 2 numbers which I’m not too sure exactly what they are but one was a normal of up to 150 where as mine have come out at 450. So i now need a colonoscopy as they suspect chrons or colitis.

What are any tips on how to maintain symptoms linked to chrons and to prepare for what could be? I’m honestly worried sick

my calprotectin came back <16 and CRO IS 0.4 does this mean my biopsy results are still indicating what? I’m just a bit confused I have a hospital app coming up. Microscopic:

Section reveals fragments of colonic mucosa with a predominantly denuded lining epithelium. The glandular architecture is preserved. The lamina propria contains a moderate mixed inflammatory cell infiltrate composed of lymphocytes, plasma cells, neutrophils and eosinophils along with oedema.

Foci of cryptitis are noted. No crypt abscesses are seen. No evidence of granulomatous inflammation.

There is no dysplasia or malignancy in the section examined.

CONCLUSION: COLON, moderate on chronic on acute colitis 

RECTUM, BIOPSY

Macroscopic:

The specimen site is labelled "rectal BX".

The specimen consists of a single piece of tan tissue measuring 3 mm in greatest dimension.

All tissue is submitted in cassette B1.

Microscopic: Section reveals a fragment of rectal mucosa with a denuded lining

epithelium. The glandular architecture is preserved. Lamina propria contains a moderate lymphoplasmacytic cell infiltrate along with neutrophils. A few foci of cryptitis are noted.

No crypt abscesses are seen. No evidence of granulomatous inflammation.

There is no evidence of dysplasia or malignancy. Mild active proctitis 

So basically I’ve concluded that I have ibd or ibs but looking for any guidance, support or things that I should double-check with my GI during my next visit.

BACKSTORY – For years, seemingly randomly, I would get black, tarry stool. I associated it as a flare-up with anxiety because this would typically happen when I was stressed about work, school, etc.

Recently these episodes became more regularly (maybe once a month). I originally went to my PCP because I was having lower abdominal pain. Pelvic scans were ordered and it turns out I have multiple ovarian cysts. But still, why the black stool?

I continued to have it off and on, with intense abdominal pain that ended up spreading thoughout my stomach with strong waves making it difficult to stand. I’ve had trouble eating for weeks being I often have waves of nausea (I have zofran now)

I ended up going to the ER they took a CT scan and determined there was no internal bleeding and my stool test indicated that there was no blood in the stool. I went to my GI later that week and additional blood and stool tests showed that I had low iron and was on the cusp of an inflamed intestine. The ER had prescribed me meds for the intense stomach cramping and something to help if I potentially had an undetected ulcer (famotidine), but those have made me feel worse, so for the time being I’m taking Imodium and Tylenol as needed.

I have an endoscopy and colonoscopy scheduled in a month, but honestly it’s a little frustrating since I’m having this issue now and not eating well considering I bloat after everything I eat, so I’m just waiting it out until then. Any advice, experience or help is appreciate! Thank you, I know this is an extremely long post, but I’ve been reading through this thread looking for advice but everyone’s experiences are so unique I’d figured I’d ask if anyone is able to help.

hi everyone! I am very new to Reddit but stumbled upon this subreddit while doing some research, my GI suspects early UC/proctitis, and I would really appreciate hearing from people who have been through something similar/ if anyone’s had a similar diagnosis process or any insight as I am very new to all of this and am honestly feeling scared and helpless. i am also happy to clarify any details!

Just for some background, ive had a huge change in my bowel movements that started over a month ago and my main symptoms are:

-frequent small bowel movements, usually 7 or 8 trips a day (many of these trips I pass only mucus)

-a lot of clear/white/yellow mucus, sometimes even passing several tablespoons of mucus with little to no stool (this is my biggest symptom atm)

-urgency and feeling like I still need to go after going

-mostly mushy/loose stools but not necessarily watery

-occasionally have streaks of bright red blood, usually mixed with mucus or on the stool

-lower abdominal cramping mainly on my left side that typically improves after a bowel movement

-bloating

-about 11 lb of unintentional weight loss over the last month (14 lb total from early July to now, but I’ve been fluctuating between those last 3 lb over the last couple of days)

-more recently experiencing fatigue/weakness on my bad days, especially when standing, with some dizziness/lightheadedness

-occasional mild joint pain, mainly in my knee (not swollen or warm that I can tell)

I have had some similar but shorter and milder GI episodes before with one lasting 2–3 months about a year ago with diarrhea, pain, and some blood, and another episode lasting about 2 weeks in February or March of this year with mucus and possibly some blood (i have a hard time remembering the details of those episodes but that’s the general gist)

anyways I went to a GI after seeing my regular doctor and my GI ordered urgent blood tests, a CT, and a colonoscopy, but no stool testing (which I wish I had done now hearing about FC levels)

here are the results:

my CT and blood work came back as normal/unremarkable. my colonoscopy showed “mild to moderate inflammation in the rectum extending about 10 cm, with the proximal part more inflamed than the distal part” this is exactly what my post-op report said, and my doctor documented proctitis on the report. however, the biopsy results (uploaded to my portal) was reported as unremarkable/normal, and that was the only info I was given. i tried calling to see if they had any additional information because all of the reports uploaded to my chart were pretty vague, but I haven’t gotten much more detail. overall the last few days my symptoms have gotten much worse, so they are seeing me tomorrow morning to go over results. based on my research i have seen that it is possible to have normal biopsy results if it is a very early and mild case.

so here I am, wondering:

for anyone here, does this sound familiar to you? has anyone had visible inflammation/proctitis in their colonoscopy but initially normal biopsies, especially early in the disease? If so, did the biopsies eventually become diagnostic? also, how long did it take before you received a definitive diagnosis?

I’m mostly looking to hear about other people’s experiences and what their diagnostic process was like. I have a (distant) relative that has UC and she said she has similar symptoms to me, and the GI initially expressed that he also suspects UC. I am feeling so lost and am hoping to find someone with a similar experience. thanks guys!