u/woahtherebetsy

Hey all. Haven’t posted so much as was waiting on first colonoscopy, so I’ll recap my situation.

Symptoms for years, but in June things really kicked off with severe abdominal pain that landed me in A&E. CT with contrast confirmed active terminal ileitis, fat stranding, mild narrowing and lymphocytes suggestive of chronic inflammation. I’d had 3 weeks of constant diarrhoea and blood which swung right the other way and I couldn’t go to the loo at all. I ended up admitted again two weeks later with horrible, horrible lower right quadrant pain, awful nausea, really really bad constipation etc. Prescribed Ondansetron, Buscopan and GI confirmed he was thinking IBD, so he ensured colonoscopy was ordered and also ordered small bowel MRI and OGD.

Over the last week or so, the nausea and lower right pain eased a fair bit, just still fatigued etc. However, I did start noticing horrible pain in my back passage initially when passing stool, but also just on its own. I figured maybe a fissure or piles higher up.

I had the colonoscopy today and it showed scarring and older inflammation in TI and ileocecal junction, plus fresh, active inflammation in my rectum. Endoscopist said I need to take steroid enema for 4-6 weeks and she wants me on it before the weekend. Biopsies will take 12 weeks (I’m in Northern Ireland, southern trust). I am so tired of feeling ill with no firm explanation for why. Anyone experienced anything like this?

So I’m still in limbo, still no confirmation of anything, but enough evidence now to need actual treatment.

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.

Craigavon IBD team anyone? Help!

Hello, hello. So I’m under CAH, not yet diagnosed and waiting for colonoscopy on August 19th - it was meant to be a lot sooner but got delayed due to staffing shortages. Received my bowel prep today, Plenvu.

Problem is, I have low sodium levels at the moment, due for repeat bloods next week but they’ve been low for quite a while and didn’t respond to IV fluids in hospital. I was sent home to wait for scope due to bed shortages. I understand the Plenvu could actually be risky due to my low sodium. I need to speak to someone for advice because as it is, I’m in a lot of pain, barely eating, losing a lot of weight very quickly (over a stone now in just a few weeks) etc. I also have very heavy fecal loading according to my contrast CT, sitting behind where I have some narrowing/wall thickening and fat stranding so the standard prep might not even be enough to clear me properly for the colonoscopy, and then the low sodium complicates things.

As I have a few weeks (a very bloody painful few weeks) to wait, I was hoping I could phone for some proper advice on making sure I’m properly prepped without risking more sodium loss.

Does anyone else have any experience with this, or advice, or even attend the team at CAH who could give me a name or number? I am under them, referred for scope by them so on their care pathway. I just don’t have anyone named yet.

TIA ❤️

This may get long. I’ll try not to but I am spiralling a little bit. Usual disclaimer: not asking for diagnoses, just verbally processing and mapping possibilities while I wait to I speak to doctors.

I’m currently being investigated for suspected IBD, likely Crohn’s (terminal ileitis and other signs on CT with contrast, other stuff ruled out, waiting on first colonoscopy). I had my gallbladder removed two years ago and at the time, the surgeon asked me if I knew why I had adhesions. I did not know because I’d never had any other abdominal surgery except a c-section, which he said didn’t explain the adhesions. He didn’t actually refer me for any further investigation.

I like to be thorough about my health queries because I’ve had a lot of medical gaslighting before, eg “anxiety” dismissed for years turned out to be a heart condition requiring cardiac ablation; only found out that I did in fact have gallbladder issues after all (not in my head, as I was told) thanks to a private gynae MRI I got because my job at the time came with great healthcare. I had the pelvic MRI because I’ve had years and years of severe pelvic pain, heavy periods etc. I had my gallbladder removed privately, so I decided to request the notes to see what was said about the adhesions in case it’s helpful for gastroenterology when I see them.

I did not expect to find what I did. It wasn’t just one or two insignificant adhesions. My hepatic colon and liver were fused together to the extent he had to surgically divide them in order to perform the gallbladder removal.

Now, this may be explained by a number of things, including Crohn’s (though that seems unlikely given the URQ location). However, I do also tick every single box for endometriosis and I have long suspected that my right side in particular is probably affected by it, but all CT scans etc have come back clear (makes sense as adhesions/endo often don’t show up).

Anyone here with Crohn’s and endo willing to share their story with me?

I’d love to hear any stories from those with small bowel-specific/ileal Crohn’s.

Absolutely not looking for pointers on possible diagnosis, just processing and information helps, especially anecdotal (I’m autistic).

I’m still waiting for diagnosis. First colonoscopy soon, contrast CT confirmed terminal ileitis with fat stranding, thickening of bowel wall etc. Doctors told me likely autoimmune IBD as infection, NSAID causes all excluded. In a flare right now that’s far from my first - it’s just my first time understanding what’s potentially been causing me to be unwell for so long! Had several weeks of constant diarrhoea (6-12 times a day, blood and mucus) which suddenly flipped to total tumbleweed. Went to A&E around a week later with very severe LRQ pain, and that’s where the contrast CT came from. I did manage one very tiny (very very tiny), very painful to pass stool sample before leaving last Wednesday and found out today it came back with normal fecal calprotectin of 15.3. So, whatever’s going on, it seems it’s all in the terminal ileum. I do have various extra-intestinal symptoms alongside years of GI issues - skin, eyes, teeth. One tooth just randomly crumbled a couple of weeks ago, not the first time!

At home now managing as well as I can with safety netting to go back to A&E on certain conditions. Really struggling to eat, BMs still one extreme or the other so titrating Laxido according to what’s going on. I constantly look about 7 months pregnant, even had a man offer me a chair in the A&E last week! I’m just preparing myself for potentially a very long road to any real answers.

Anyone up for sharing? I’d really appreciate it. Limbo is hard.

Wasn’t sure what flair to use so went for IBD flare because that’s where I’m at right now!

Just getting to know the relevant groups here for this stuff. I’m in Northern Ireland, female in my 40s with many years of symptoms that have now worsened quite a bit and include blood, mucus, cyclical patterns from one extreme to the other bathroom wise, previously clear imaging besides a “twisty” bowel and adhesions found on bowel during gallbladder removal. I’m here now following 3 hospital visits in the last month, one of them an admission (with no bed after 50 hours), confirmed active ileitis and waiting for red flag colonoscopy. My whole experience last week in particular was, to say the least, pretty awful. One minute I’m ok and the next I’m in floods of tears thinking about it and worrying about if I have to go back. I was sent home with no information on dietary advice, prep for colonoscopy, nothing. GP sent me back to A&E on Friday as I couldn’t pass wind, but fortunately (so lucky!) things progressed late Friday night.

I’m at home again, actively flaring, while waiting for scopes, biopsies and diagnosis. They’ve already lost multiple blood tests and accidentally cancelled my bowel prep for the colonoscopy once, fixed this morning by the scheduling team. Based on my experience so far, I’m not expecting it to be easy despite the confirmed contrast CT findings (severe inflammation in ileum, ilio-something junction, fat stranding), ongoing blood and mucus in stool, weeks of severe diarrhoea followed by impaction. Gastro incredibly dismissive. Belly is stinging and bloating right back up again as I type this.

Feeling pretty alone with it, tbh, and would really like to talk to people with similar experiences.

I’m posting here because I’m hopeful there might be others who have experienced similar and I’m always up for learning.

TLDR: dx terminal ileitis last week along with likely post-cholecystectomy syndrome; in hospital 3 times in the last 3-4 weeks; Crohn’s strong possibility but awaiting scope & proper diagnosis. Symptomatic 15+ years. Rarely ever take NSAIDS or pain relief of any kind, not on any other long term medications. Here for similar stories and people who get it.

I’m F, in my 40s from Northern Ireland, and I’ve just had a pretty rough week. Or month. Ended up in A&E last Monday with severe lower right abdominal/back pain that totally immobilised me for several hours and remained pretty bad for a while after that, even with pain relief. Contrast CT showed severe inflammation in ileum, inflammatory markers high, acute medical team admitted me due to first suspicion being infection that needed 3-5 days of IV antibiotics. They then ruled out infection and I was told most likely autoimmune inflammatory bowel disease. One doctor from acute medical was so amazing - he spent a while reading my notes and said to me he could see I’d been searching for answers for many years with real symptoms and that he was so sorry. He said he wanted to keep me in for full investigations because my CT with contrast was “serious”.

Was in 50 hours total, waited on a bed, but no bed was forthcoming so the gastro team sent me home to wait for red flag colonoscopy etc. Was unable to provide a stool sample the whole time except one tiny little pellet that was excruciating to pass; still waiting to hear if that was enough. Ended up in again on Friday, sent by GP who was concerned because I had flipped from weeks of severe diarrhoea to total constipation for almost a week and couldn’t pass wind, but was sent back home with triple dose Laxido and taken off 30/500 cocodamol for pain relief (am now ‘moving’ again). I was also down a few weeks ago, again with abdominal pain and raised LFTs, but ordinary CT and abdominal ultrasound was clear, so was just referred urgently to gastro and handed some omneprazole. Then last week happened.

In that entire 50 hours, I got 2-3 mins with one gastroenterologist who rapid fired questions at me without giving me time to answer, fixated on previously suspected and since ruled out coeliac disease, and pretty much concluded with, “Well what do YOU think is wrong with you?” I was speechless and reduced to tears. Staff witnessed it and offered to get him back down, but I needed time to calm. He was supposed to come apologise, but didn’t, and his team subsequently failed to review me on multiple occasions despite being constantly chased by acute medical team and nurses. Weds evening they basically left a note on my file saying to send me home because they were too busy to see me.

So, I’m still feeling pretty weepy and stung by the whole thing. I’m still ‘active’ with whichever IBD this is, flipping from severe diarrhoea to total standstill. I’ve had blood and mucus in stool regularly now for over a year, sporadically before that, and I have various skin and joint issues that I only now realise could be connected from doing my own reading. I was always told I just had IBS, then when my gallbladder was removed the surgeon asked me why my bowel was covered in adhesions and scarring. I had no idea; only previous abdo surgery was a c section in 2025. I’ve had CT colonography to investigate the blood; told all fine, just “twisty” bowel. Normal CT always clear. Years upon years of symptoms: abdominal pain, cyclical diarrhoea, excruciating bloating, immense fatigue and joint pain (to the point I was told I had fibromyalgia), unexplained skin rashes, painfully itchy and swollen eyes, no known allergies. Now just waiting for apparently red flag colonoscopy, endoscopy, biopsies and maybe, if I’m very lucky, some answers.

Crohn’s was never on my radar, but I understand from the location of my inflammation and overall presentation it’s a strong possibility. I’m hoping that reaching out to others might help me feel a little less blindsided and alone with it.

Thanks for reading, and I’d love to hear some stories.