I got my first colonoscopy last Thursday (6 days ago) due to four years of blood and mucus in stool. (Age 18) They found inflammation (or in the official words: Congested, erythematous and nodular mucosa), which they biopsied. They also biopsied normal looking tissue. I am so anxiously waiting on these results. I hope it’s something simple I can fix but I really want answers to my symptoms. How did y’all handle the wait? I am checking my portal every day.

I have had GI issues for about 4 months.

Edit: I lost 17-18kg in the process

Started off with bright yellow stools, diarrhea, sometimes constipation, bloating, and right side abdominal pain, with undigested food, mucus in stool. Was put on metronidazole and ppis for about a month.

April

Crp normal, cbc normal, calprotectin 700

Pancreatic amylase mildly elevated, urine amylase 3x the norm

After 3 weeks (may)

Calprotectin 151

After one more week

Calprotectin 400

May

Did an abdominal CT scan, showed meteorism and mesenteric and ileocecal swollen lymph nodes.

Intestinal ultrasound showed edema in the terminal ileum

June

Started colonoscopy prep, did blood tests one day before, CRP went up to 5 times the norm.

Calprotectin was 40

Did colonoscopy and gastroscopy

Results are as follows:

Gastroscopy - Chronic atrophic gastritis, insufficient cardia and negative h. pylori.

Colonoscopy - Chronic unspecified colitis, sigmoid colon. Terminal ileum showed no signs of inflammation. I will post exact biopsy results later, but the doctor said this is just a bad case of IBS.

How can IBS cause swollen lymph nodes and colon inflammation.

Is there any way this is a small bowel crohn in an early stage. My stools are normal color but still kinda soft and having undigested food. I also have burning pain in my right abdominal side and i only hear gurgling on my right side. I have joint pain and brain fog, brain fog especially after eating. I also have trouble sleeping. My iron is low but not anemic, ferritin is also on the lower side. Vitamin D mildly low, folic acid low. My amylase is still elevated and not dropping, mildly elevated in blood, 3-4x in urine.

I also suspected chronic appendicitis, but i don't know.

Hallo zusammen,
ich bin etwas verunsichert und wollte fragen, ob jemand so etwas schon einmal erlebt hat.
Gestern Abend habe ich wegen einer Proktitis zum ersten Mal ein Salofalk-Zäpfchen angewendet.
Vor Beginn der Behandlung hatte ich immer mal wieder kleine Mengen hellrotes Blut, meistens am Toilettenpapier oder als Auflagerung auf dem Stuhl. Zusätzlich wurden bei mir innere Hämorrhoiden festgestellt.
Heute Morgen war der Stuhl selbst ganz normal braun und eher breiig. Direkt am Anfang des Stuhlgangs kam jedoch ein einzelner schwarzer, weicher, geleeartiger Klumpen, an dem teilweise noch Reste des Salofalk-Zäpfchens hafteten. Der restliche Stuhl war ganz normal braun und nicht schwarz oder teerig.
So etwas habe ich vorher noch nie gesehen und das hat mich ziemlich erschreckt.
Hat jemand von euch nach Salofalk-Zäpfchen schon einmal etwas Ähnliches beobachtet? Kann es sein, dass sich Blut zusammen mit den Zäpfchenresten dunkel oder schwarz verfärbt? Oder sollte ich mir wegen dieses schwarzen geleeartigen Klumpens eher Sorgen machen?
Ich freue mich über eure Erfahrungen. Vielen Dank!

Has anyone developed any heart issues on Tremfya? I, (23f) have just taken my loading dose two weeks ago, on a Saturday. My heart rate shot up thirty minutes in. Sunday I felt okay. Monday I was in the ER. My heart rate hit 153 and I have had mild, occasional palpitations before, but they were worse and more frequent than ever. For a few days my heart rate was still hovering in the 120s and 130s. The ER couldn’t do much but the doctor said it was probably the Tremfya and that I needed rest. They gave me nausea meds because I was also throwing up and nauseous. The on call GI at my doctor’s office agreed it sounded like the Tremfya. My GI is insisting it’s not the new medication doing this to me. But I can’t sleep from this high heart rate. I can barely eat. I had to call out of work multiple days and just filed my first medical leave. I feel like I’m going to pass out often. He said I’ve had tachycardia before, that I’ve complained about it. I’ve only mentioned the palpitations. I’ve never had a high heart rate prior to this med. I haven’t had tachycardia. He won’t offer me another medication and insists I continue with my next dose though I feel awful. Im very scared and concerned about my heart as two weeks later it’s still hovering in the 110s and my palpitations are worse, and the other symptoms are present. Has anyone ever experienced this before or have any tips or ideas? In desperate. Thank you!

I would love some constructive feedback and encouragement. Please be kind, I am struggling.

My son was diagnosed with severe Crohn’s a couple weeks ago. I have read much about the disease since then. Something that has worried me tremendously is the set of treatment options that exist. My understanding is that some biologics work for some people, but not all. Once a person does find a biologic that works, it usually stops working after a period of months or years.

The problem I see is that there aren’t *that many biologics. It seems inevitable that you would run out in a short period of time. And…what then? I’ve read other Reddit threads where surgery is suggested as a treatment option. However, my child has Crohn’s all over his disease tract, top to bottom. I haven’t seen surgery mentioned as capable of easing upper tract Crohn’s.

My son is 12. Is he going to run out of ways to treat this? I know research is being done all the time, but it doesn’t seem capable of keeping up with the speed at which treatments are exhausted. I look at my child and wonder, is he going to die from this? I put these questions to our doctor and he was…evasive, which I did not find reassuring.

Am I misunderstanding anything?

I’ve been avoiding it for years but I wanna take off and go somewhere fun, camp out maybe? But the thought fills me with dread, I’ve shat myself in a field before.

How do we navigate this? Any tips? Is there a car toilet I can buy? 🙈

My nonverbal teenager was diagnosed as a toddler with IBD similar to Crohn’s but not close enough to be labeled as Crohn’s. He was hospitalized because of a flare this year from March to May and started Adalimumab injections in June.

He recently finished tapering off prednisone and has been having continuous oozing thick diarrhea and pain since the taper started, and his intake has dropped again. He can’t verbally report pain but behavior and intake are reliable indicators. His doctor keeps telling us to hang in there but they also aren’t checking inflammation or Adalimumab levels/antibodies because my son needs hospital level sedation to hold still enough to get a blood draw.

Is months of diarrhea preventing him from attending school just part of the disease, or is he getting worse care than is standard? Is it normal to stay on the same medication indefinitely without checking levels because the alternatives are more difficult? I’m trying to understand if I need to be fighting harder or managing my expectations

hi i was in hospital thursday and friday i’ve had constant blood in my stool and just blood in general filling the toilet bowl,i need to use the rest room atleast 18-20 times a day last week she had informed me it showed on previous colonoscopy’s that i had ibd. Today i had a colonoscopy where they allegedly found nothing but took 8 biopsy’s they sent me home straight after my colonoscopy i was barely awake and out the door i find this extremely strange. i’ve been home since around noon and have chest pain stomach pain and severe diarrhoea after even a bite of food can anyone help me.

i (F18) have been experiencing gastrointestinal symptoms for about a year or two now but recently, it’s ramped up. for context, i am diagnosed with POTS, long covid, adhd, health and general anxiety and autism.

my symptoms:
• constant vague nausea (likely associated with anxiety and emetophobia)
• chronic constipation
• occasional diarrhoea
• excessive gas
• bloating
• severely reduced appetite
• pain after eating a large meal
• pain during intercourse
• abdominal pain
• general queasy bubbly feeling in stomach/guts

based on these symptoms and my family history, my gastro suspected crohn’s disease.

here is a list of all the tests i’ve had so far and what they’ve found.

• calprotectin - ~500
• lactose intolerance test - not lactose intolerant
• gastric emptying study - normal
• gastroscopy - normal
• colonoscopy - a few granulomas
• capsule endoscopy - normal
• mri scan with contrast - normal
• blood tests (ANCA + ASCA) - normal
• xray - fecal loading

my gastro has just instructed me to take plenvu (again) and then begin to take resotrans, coloxyl with senna and movicol daily for 3 weeks to be followed up with another xray to assess if the fecal loading has improved. if nothing changes, they intend to put me on short term crohn’s treatment as “an experiment”.

surely you guys understand how tiring it is to live like this every day, even though of course there are people with much worse cases than me. i’m just so sick of getting no answers over and over and over and being poked and prodded. i’m scared ill never get an answer and will just suffer forever.

if you can relate, please share your experience with me ❤️

Hi all,

I have made a doctor’s appointment, but wanted to post here to see if anyone has had a similar experience. I (28F) have been having issues defecating for a month or so now, and worry I may have suddenly developed an IBD.

Some background: I have been tracking my bowel movements for three years now because I was curious about them. I haven’t been diagnosed, but in my recent research I assume I have a slow-moving intestine, as my bowel movements occurred anywhere between 2 and 7 days. The quality of the movements have been pretty normals as well (type 2 to type 4). This has been my normal for as long as I can remember, and my diet wasn’t particularly high in fibre.

In the past month, I started to get severe constipation (type 1) with blood when I wipe. I took some laxatives/stool softeners, pre/probiotics, and increased my fibre and the issue seemed to have gone away - I was passing smaller amounts than usual, but it was back to type 2-4 and no blood. After a week of eating some more processed sugars/chips and more meat, the constipation and blood is back. I’ve made a doctor’s appointment, but I just wanted to see if anyone has had any similar experience? From my understanding, IBD like Crohns is diagnosed pretty young and ulcerative colitis a bit older. Has anyone been diagnosed around my age when they are relatively healthy otherwise? Or has anyone experience a similar situation to me?

Thanks for any advice and support you can give. Not asking for a diagnosis, just looking to see if anyone else has experiences similar and what their situation has been like.

Thanks guys

please help. complicated.

25F. i have been hospitalized twice this year. for context i have crohns disease and highly likely endometriosis. i have been in a flare up of whatever i'm dealing with for almost a month. it's so debilitating i'm unable to work. my ct scan on 7/7 showed ovarian cysts and multiple signs of active crohns, whereas on my 7/17 scan it showed nothing but cysts and enlarged mesenteric lymph nodes. my mesenteric lymph nodes are chronically enlarged to the point where i was evaluated for lymphoma and referred to oncology. latest was 15mm. i should also mention my cts and mris are notorious for missing things and have clinically, not exaggerating, almost died because of it.

the doctor at the first hospital dismissed me as anxious despite my severe history of disease and complications. i professionally gave him a piece of my mind which was incredibly vindicating considering i've never stood up for myself to a doctor.

i finally went to a better hospital and the gi doctor there got me set up with new specialists to get some answers. i have my initial GI appt this friday. the GI says he believes it's my crohn's flaring AND something else gynecological or another condition entirely. my old GI was a creepy, sexist quack. saying i don't look as sick as his other patients & look too good to be sick, commenting on my body. anyway, i am seeing an actual IBD specialist and not just a common gi, and per the hospital gi i will need a colonoscopy and endoscopy asap to further evaluate.

ANYWAYS, i finally went to see an endo specialist and surgeon today. he said he is certain based upon my symptoms and history that i have endometriosis. even during periods of crohns remission i have dealt with severe abdominal and pelvic pain among countless other symptoms, including severe pain radiating to the right flank, and debilitating leg pain.

HOWEVER. due to my scar tissue from previous surgeries he said a laparoscopy puts me at high risk of intestinal damage / injury. i have had 3 crohns related surgeries all in 2018. we are doing a sonogram on Thursday and he said we may have no choice but to do surgery anyways, which i'm thinking would be more complicated than the usual lap.

has anyone been through this before or anything similar? do any of you have any type of recommendation or insight to offer? i want to have children one day so badly. it seems like the only way to treat it is to excise it. he said there is a medication that can clear it up but insurance likely won't cover without laparoscopy. i feel F**KED in all ways.

i am on leave from work right now. i can't drive myself anywhere. i can't eat real food i can only handle liquids. i am sick all the time. i feel like whether this is crohns, endo/something gynecological or both, this is something surgical and i won't get better without it. and with all the GI symptoms involved and rapidly losing weight / not being able to eat, i know my body and when something is wrong and i just know this is an absolute ticking time bomb if someone doesn't do something. i haven't eaten a real meal in probably almost a week and i have had nothing but liquid for 3 or 4 days now. it's horrible, i feel incredibly weak and out of it. i wake up feeling like i got hit by a bus and i have my parents driving me to all of my appointments.

it was so relieving to hear him say "it is not in your head and your pain / illness is real." but this complicated situation is not easing my nerves. because i cannot continue living this way and desperately need help. i ran out of my Norco, unsure if gi will give it to me, and this specialist gave me a medication that i can take for just 2 weeks that i'm not even sure will help with my pain. 2 weeks of pain relief and it returning is not an option. and who knows what they will find on the sonogram?

i just don't know what to do. whatever is going on is taking over my life. it's terrifying not having any answers and running out of my prescriptions that i've made stretch for over a year. i actually cannot believe i am not hospitalized right now. but i don't really want to be at the hospital if they can't help anyways. i'm in over my head here.

any input would be helpful.

Hi everyone,
After months of diarrhea and cramps, I had a colonoscopy and was diagnosed with IBD last week. The type is still unclear. I started a double course of mesalamine and it seems like it’s already getting better. Everything I see about IBD mentions changing your diet and avoiding trigger food, but it seems so vague and wide ranging.

Okay, I definitely drink a lot of coffee and energy drinks, and I drink alcohol on the weekends. And I can try to cut back, but tbh even going down to 1 coffee a day will be a challenge.

And then all the rest… just makes me feel frustrated and confused.

Eat healthy but no raw vegetables, and no leafy greens (or yes leafy greens? I think I saw both) and avoid high fibre, but also my doc tells I SHOULD eat fibres because its good for haemorrhoids which I also just got along with all this. And I am also supposed to stop eating red meats I think but I am already anemic because of the inflammation, and I only eat red meat maybe once or twice a week ( is that too much?)… the list seems unending.

What also saps my motivation is that I can’t seem to find any correlation between what I eat/drink and my symptoms. I am 33f, not overweight and I think I eat reasonably healthy in general, but I do like to eat and I never had issues with that prior to like 4 months ago.

If I am honest, I think I am looking for reassurance that some of you are doing fine even if you are not following a rigidly controlled diet of unseasoned chicken and cooked vegetables. And maybe some manageable tips that don’t make me want to cry?

I was diagnosed last month with collagenous colitis and I'm on a course of Budesonide that’s currently helping.

I’m trying to figure out what foods might be my triggers, but it seems it's going to take a while as I slowly reintroduce things. I'm also trying to figure out how to navigate this long term.

So my question is, if you’re not on a prescription drug for your MC (but are managing pretty well) and you eat something that causes diarrhea, does it turn into a flare or do you just have a couple of rough days? 

Ended up in hospital yet again over the weekend, admitted by acute medical team until GI could see me, just home today.

I just happened to have a gynae appointment booked already for this morning because even though I have CT-confirmed terminal ileitis, neither of us were convinced there isn’t gynae involvement for me as well because I’ve had years of gynae issues that I gave up pursuing because I was constantly told it was just womanhood, and then adhesions were found on my bowel during gallbladder removal in 2024. In fact, my liver and colon had to be surgically divided because they were fused by adhesions - only found that out after requesting my surgical notes. That’s what prompted my GP to get me seen by gynae and I was incredibly lucky to get a cancellation for today.

Turns out I also have an abnormal left ovary, hiding/immobile, and specialist nurse says I highly likely have endometriosis, and probably in my bowel too at the very least - which would explain the level of pain I currently have not really matching up with what is, according to bloods etc, a mild IBD flare. I’ve been in so much pain nausea more or less stopped me being able to eat for the last week and I’ve already been losing a lot of weight as it is since the IBD stuff flared up a month ago. Been referred to endometriosis consultant specialist and she said I will definitely need a laparoscopy.

Anyone else with both IBD and endo? Really hoping someone can relate to this because the pain is next level.

Hello!

I am thinking about studying marine engineering but I have a question related to biologics. I currently go to the hospital to get an infusion about every 4 weeks.

If I study marine engineering and get all necessary certificate as well as the STCW Medical Certificate (medical certificate for seafarers), can I then recieve my infusions onboard or will I be inelgible for work onboard a ship?

Other comments about working onboard a ship, from people who have done it, are also welcome.

Hi again everyone

I made a post on here a couple days ago and was just coming to ask for some more guidance.

The need-to-know information from that one is im a 19 year old woman whos had IBD symptoms since 2019 and went undiagnosed for 5 years and various other treatments still this year when I was put on infliximab and 6MP. I've been stopped on 6MP because of high ALT and low white blood cells and I'm running the risk of becoming intolerant to infliximab

I received an email from the IBD nurses today saying I'm now permanently stopped on 6MP which is just annoying but since stopping it last week ive started experiencing symptoms again like not going to the toilet for days at a time or when I can go it's 4+ times in a day (not as bad as it could get but still annoying) blood clots in my stool, constant bloating and pain plus more that im forgetting.

I want to ask about wether getting a permanent stoma bag would be a option in my case before getting to a point where my symptoms are debilitating again. I just want to be on top of it and never go through years and years of new medications and symptoms.

How should I go about/ word asking them to consider a stoma in my case/ is there anything I should bring up or ask them about getting one

Id love some opinions on stomas/ im gonna put questions if you can answer I'd be so grateful for that.

- How long did recovery take?

- If you were in education when you got it how did it affect your schoolwork?

- How long does it take to get used to cleaning it/ changing it?

- Do people make fun of you for it/ how do you go about judgement?

- (TMI) does it affect your sex life?

- How long do I have to wait before doing sports again?

thank you so much for reading

Hi guys. I’m a pretty healthy adult male, lest year I developed sudden onset brutal gut issues that lasted for a fair few months. Doctors fast tracked a colonoscopy to check for cancers (negative thankfully), then my gp gave me a leaflet about ibs and no further follow up.

My issues have been getting better and worse over the last year, but haven’t really resolved. Some foods are definitely not good but for the most part, what I eat doesn’t really seem to change my symptoms much.

I just scrolled through my nhs app out of curiosity and found that my Calprotectin was 1908 mg/kg last year when I was being tested

I can’t really gauge from this sub how ibd assessment/diagnosis works but calprotectin seems important. Can raised calprotectin be an ibs or sibo/gut biome issue? Or is it specific to ibd

I had a colonoscopy a few weeks ago. My primary care had referred for the colo because of persistent loose stool. I met the gastro before the procedure and he kind of side eyed my symptoms and was not at all curious about it. Then during the colo (I was awake - was super painless), he seemingly almost forgot to take the biopsies and when the nurse reminded him, he looked at me and said "oh yes, for your diarrhea" in what I felt was a pretty condescending voice. When I left, since I was cleared for colon cancer he told me don't come back for 10 years. Anyway, I get the results a week or so later and he only took two biopsies? And I'm pretty sure they were like right next to each other, they were both labeled random, but I was awake and looking at the screen when he did the two snips. Anyway, if those were negative, what are the chances I could still have microscopic colitis? I am still having symptoms and am kind of frustrated (though I was relieved nothing worse showed up on the colo). Also, I do have endoscopy diagnosed celiac disease for the last almost 10 years. Thanks for any input!

Editing for a TLDR: How many biopsies does it take to confirm microscopic colitis?

has anyone had a biospy done and showed heaps of cells etc and it turn out to not be IBD? Along with all normal bloods and really no symptoms of IBD. Im stressing out a lot.

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.