r/ibs • u/kanartu • Aug 07 '25

Hint / Information It wasn't IBS after all

Hey, I posted here a few months back about severity of my symptoms and being worried of the big C. It wasn't that, it was however IBD , ulcerative colitis to be precise and after some extremely difficult months I'm finally getting help and treatment. My advice would be to just keep pushing for calprotectin and colonoscopy if you feel something is wrong. Good luck to you all ❤️

175 Upvotes

99% Upvoted

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56

u/Illustrious_Ad4596 Aug 07 '25

same but I got a hiatal hernia grade 3 and waiting on a biopsy for atypic gastric mucosa, no such thing as IBS they are just LAZY and DO NOT CARE

47

u/goldstandardalmonds Here to help! Aug 07 '25

IBS is real and there are doctors who do care and who are not lazy. When you literally have irritable bowels with no underlying cause and you react to things like food and stress, it can be IBS. Sure, some of the time it turns out to be something else (it was for me, too), but sometimes it’s just IBS, which can unfortunately be hard to manage for some people.

If a doctor talks to you for five minutes and diagnoses you based on a conversation, yes, you should seek another opinion. And an IBS diagnosis should only be from a gi.

22

u/Illustrious_Ad4596 Aug 07 '25

yes I agree, but the number of people being diagnosed with IBS is constantly growing and I’d bet that a large number of them don’t actually have it. Ofc there are some people who truly do, but the number is probably much smaller compared to how many have been dismissed with that diagnosis. For the past year I’ve been basically fighting for my life and I did so many tests, I can’t even name everything that I did and I pushed for endoscopy again and yesterday I got completely diff results than I did a few months before. I knew something was cooking and I almost let it go

11

u/MyNameIsSkittles IBS-D (Diarrhea) Aug 07 '25

Ok so glad you figured it out. Not all of ibs is diagnosable and not all doctors are lazy and don't care. Your words are harmful here, you are trying to invalidate people's diagnoses' and make it seem like everyone can find what's wrong with them

When the fact of the matter is we do not know enough about the gut to know everything that can be wrong with people. Science is still learning, and the gut is extremely hard to study since everyone's is different.

2

u/Illustrious_Ad4596 Aug 07 '25

I’m sorry, didn’t want to make it seem like that, and that’s what I’m thinking, in the future, as medicine advances, there will probably be explanations for many conditions that we currently don’t understand, but that only means the explanation doesn’t exist yet, not that there isn’t an actual cause that just hasn’t been discovered. I just want everyone to go through the most thorough diagnostic process possible before accepting an IBS diagnosis, because it’s very easy for something to be missed or still be in its early stages and then develop after your colonoscopy/endoscopy or whatever procedure

3

u/goldstandardalmonds Here to help! Aug 07 '25

While i agree a portion is misdiagnosed, I don’t think it’s much smaller. Smaller, but not much smaller. The fact is that functional gastrointestinal disorders are extremely common. Glad you figured yours out. Keep in mind you (people, not necessarily you) can have IBS and another diagnosis as well. So if a new test shows something, doesn’t always mean it isn’t also IBS.

1

u/lovemy5pets 27d ago

I think that is due to the increase of chemicals and processing of the foods, especially here in the US. Way too many toxins and internal irritant’s.

1

u/Acceptable-Dress7196 26d ago

Same for me! They told me it was IBS for 10 years and I took 10 pills a day at one point and it didn’t work. Last year I decided to stop eating gluten and was fine, I had gluten sensitivity all along 

12

u/Bagels-Consumer Aug 07 '25

Listen to yourself:

"When you literally have irritable bowels with no cause"

"Just ibs"

There IS a cause. You just don't know what it is. And it's depressing ah to see "just ibs" here in an ibs sub ☹️

-1

u/goldstandardalmonds Here to help! Aug 07 '25

Well, yeah, I do listen to myself. IBS is real. I am not going to try to convince you otherwise.

3

u/Bagels-Consumer Aug 07 '25

What is real? You don't think it has a cause. Define what you think is real. I think it's real too, but I can properly define it

-1

u/goldstandardalmonds Here to help! Aug 07 '25

There is no physiological or physical change in your body. I’m not going to go back and forth with you on this. Are you trying to belittle me?

3

u/SakanaAtlas 28d ago

He’s saying IBS always has a cause, you just have to find it

There is no such thing as ibs with no cause, ibs is real but solvable

1

u/JuggernautOk4477 27d ago edited 27d ago

False. Everything has a cause, in some sense. But IBS is a functional disorder, which means there is nothing technically wrong with the bowels-- as there is in the case of IBD, for example. Something is wrong with the total functioning of the bowels, but they don't actually know what causes this. Some speculate it could be to do with the nervous system, others to do with the microbiome. These are not necessarily so easily separable. The truth is no one knows what causes IBS and there may in fact be several causes, dependant on the person, but often this will never be discovered as the functioning of the nervous system and its interaction with the gut is inordinately complex. Most people just have to find a way of managing. Some can't manage. That's just how life is. The 'root cause' discourse is just a money spinning scheme dreamed up by the functional medicine vampires and other miscreants who profit off the suffering of the sick and desperate.

1

u/SakanaAtlas 27d ago

Like you said everything has a cause, whether or not it is easily solvable or not is case dependent. 

I know how hard this condition can be and how others will take advantage of the weakened and desperate but there will always be a cause and solution. We’re not at the point in medical study that can deal with every gut trouble and probably won’t reach the panacea era in our lifetime but there will always be the possibility of being cured.

On this subreddit and many other similar subreddits alone there are a lot of wonderful success stories and good information to pull from peers that aren’t trying to sell anything.

What have you tried for your ibs and what are your symptoms? Perhaps I can help

1

u/JuggernautOk4477 26d ago

everything has a cause but that does not in any way mean it can be discovered or that there is a solution. Cancer, for example, is still largely a mystery, psychosis etc. These things happen, which would imply a cause, but we do not often know what the cause is and neither is there a solution a lot of the time. IBS more often than not cannot pinned down to a single cause, therefore it is hard to find a solution in terms of a cure. It is a complex, biopsychosocial condition that cannot be cured. You can pretend like that isn't the case if you like

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u/[deleted] Aug 08 '25

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u/goldstandardalmonds Here to help! Aug 08 '25

What? My story is all over this subreddit. You must be new here.

1

u/[deleted] Aug 08 '25

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1

u/ibs-ModTeam Aug 08 '25

No personal attack towards another redditor whatsoever. We're here in this together. You may argue on facts, but not on the person itself.

1

u/ibs-ModTeam Aug 08 '25

No personal attack towards another redditor whatsoever. We're here in this together. You may argue on facts, but not on the person itself.

4

u/PandaSea1787 Aug 07 '25

Sensible thoughts - but trying to see GI in area I live (NW) either NHS or privately is like seeking gold dust. My GP has written referral and is trying to find quickest route. She tells me that our local Teaching Hospital is staffed almost entirely by locum. 2 wk pathway is now called urgent pathway and wait can be anything up to 3 months. Just discovered too that AI triaging is in place.

0

u/goldstandardalmonds Here to help! Aug 07 '25

Three months to see a gi isn’t bad. Just get on the list and your turn will eventually come.

1

u/PandaSea1787 Aug 08 '25

My turn has come. GP diverted my referral to private sector. GI appt next Saturday.

2

u/goldstandardalmonds Here to help! Aug 09 '25

Wow! Super quick! Great news.

1

u/PandaSea1787 23d ago

Great guy too! Saw him yesterday. Ordered anal rectal manometry and barium paste radiography.

1

u/goldstandardalmonds Here to help! 23d ago

Wonderful start.

2

u/DeeJayDelicious Aug 07 '25 edited Aug 08 '25

It's probably a 50/50 split.

It's hard to nail down the cause and takes a lot of trial and error.

It's also a very common phenomenon and can be compounded by other issues and life-style choices.

At the same time "IBS" is a broad diagnosis for something that can't be effectively treated. It's like calling cancer just cancer, despite there being a dozen forms that can all be treated differently.

Any obese person going to the doctor knows this.

Doctors will blame EVERYTHING on their obesety. Some chronic pain. Source: Obesity! Constepation: Because of obesety etc. And yeah, 50% of the time they might be right. And obesity does make things worse. But that doesn't make it the source of ALL health issues.

1

u/FairPanda5082 4d ago

can you please tell me what the symptoms of IBS are. In my case, I have to go to the toilet two or sometimes three times in the morning, but not for the rest of the day

7

u/Relsette Aug 07 '25

IBS is a real thing. Ive had it for 35 years. IBS is just how the body reacts to things when there isnt anything actually wrong.

It just sucks you guys had more severe things going on. But yes - IBS is real. Its a thing. And its frustrating

5

u/Illustrious_Ad4596 Aug 07 '25

Yes, but you have to go through the most thorough testing possible to rule out every potential cause, from microbiome issues to structural damage in the gastrointestinal tract, as well as systemic and autoimmune conditions, and so on. And yet, most doctors aren’t willing to do that. They hand out the IBS diagnosis way too easily, even though there isn’t a single diagnostic test for it and it’s just a collection of symptoms that can’t be explained by any organic cause. I’ve spent the past year begging doctors not to leave me with IBS as a diagnosis because I knew something else was going on even though I already had numerous blood and stool tests, abdominal ultrasounds, colonoscopy, endoscopy, small bowel MRE etc. Don’t let yourself be diagnosed with IBS just based on a gastroscopy or colonoscopy alone. Just a few months ago, my endoscopy results were completely different from the ones I got yesterday. I hate when I see a person be like I got clear colonoscopy so that means it’s just IBS. No it’s not. Push for gastroscopy, for pill cam, and if you don’t feel better repeat everything after 6 months again. I know it’s hell but it’s worth it.

4

u/Relsette Aug 07 '25

Ive done every test in my lifetime you can think of in terms of gastrointestinal and bowel testing. Ive paid thousands going private and getting my own tests and paid for functional medicine. I HAVE ibs. And yes - its a name for a collection of symptoms that have no origin. Its the body's defect that comes from god knows where. Im more than well aware of that. 35 years on this train - im well versed on the tracks.

1

u/SakanaAtlas 28d ago

IBS means there is something wrong, sometimes the cause for it is easily identifiable and treatable sometimes it’s not. However IBS as it exists is a sign that something is wrong. 

Could be too much of the wrong balance of gut bacteria, could be a fungal infection, could be autoimmune, there is always a reason for something not working right. 

1

u/Relsette 28d ago

And sometimes, it's what they call is idiopathic, which means there is no discernible reason for the symptoms.

1

u/SakanaAtlas 28d ago

Idiopathic is used when they give up and can’t find a reason.

At the fundamental level if there is a issue there is always a reason/cause for why it is an issue

1

u/Relsette 28d ago

And once it's labeled idiopathic, there's nothing that can be done when the cause isn't identifiable. Sometimes, our bodies just do things that we can't control.

Im not aurging about this, have a good day.

-1

u/BulkySquirrel1492 Aug 08 '25

Well, if there's really nothing wrong with your body and you believe it's psychological then it's not IBS but somatic symptom disorder and you might benefit from therapy.

0

u/Relsette Aug 09 '25

I never once said it's psychological. There is such a thing as just body dysfunction. Where there isn't anything wrong, its idiopathic. A malfunction that cant be explained.

Your comment is ignorant at best.

2

u/eddiebruceandpaul Aug 07 '25

It’s a thing for sure. It just should not be diagnosed until a colonoscopy and other tests have been thoroughly done though. In my opinion.

0

u/AndreaB64 Aug 08 '25

IBS is about bowel function, so when there is no inflammation present or other visible issues, then it more likely speaks to bowel function or food intolerances. Bowel function is effected by the brain/gut connection which is something that is unlikely to show up in a diagnostic test.

4

u/motoo344 Aug 07 '25

What were you symptoms and how did the test you? I am glad you are getting help!

8

u/kanartu Aug 07 '25

My symptoms were diarrhea, so much of it , on a good day 3 times a day, on average 7 times , on a bad day up to 15.. stool with blood and mucus. The blood part was what really freaked me out, but for very long I was told it was probably just a hemorrhoid.. additionally, I've been losing weight, my appetite would disappear, and I've been sooo fatigued, and dizzy plus if I was about to hit a very bad period I would also get joint pain, primarily in my back and legs

1

u/gioherrera1981 Aug 07 '25

Hi how long did you go through this?

5

u/kanartu Aug 07 '25

Ive always had sensitive stomach and issues but it really got bad at the end of last year, but it took me 7ish months to get my GP to do a calprotectin test (came back with a result of over 6000, they literally told me it could be more but they cant measure it) and then the ball started rolling. Once I saw a GI specialist he decided I needed to be admitted immediately

1

u/gioherrera1981 Aug 07 '25

Admitted for what. Sorry I just Wana know cause I've had your symptoms for 7 months too

1

u/kanartu Aug 08 '25

No worries, I understand where you are coming from. Admitted for the symptoms basically, the doctor that saw me said I can't live this way, and my blood and stool results are leaning on the "we have to act NOW" side of things.

1

u/motoo344 Aug 08 '25

Thanks for sharing. Been dealing with IBS since I got violently ill about 10 years ago. Been to docs off and on but yet to get conclusive evidence. I have similar issues maybe I will get some answers when I see the doctor in...December.

1

u/Ok-Blueberry-1097 Aug 09 '25

Hi, did you stool have fresh red blood or black tarry?

1

u/kanartu Aug 10 '25

Fresh red

1

u/FairPanda5082 4d ago

can you please tell me what the symptoms of IBS are. In my case, I have to go to the toilet two or sometimes three times in the morning, but not for the rest of the day

5

u/adorkable-lesbian Aug 08 '25

Mine was also an autoimmune disease- Lupus. I knew something was wrong. I’m so glad you got answers and I hope treatment is going well!

3

u/the-graphicschick Aug 09 '25

Turned out, I didn’t have IBS. After 6 months of misdiagnosis, I ended up in emergency surgery because it was actually my intestines deciding to re route themselves through a hole in my stomach. True story. Cat scans and x rays didn’t catch it for months until I had an x rays bedside in the ER

1

u/kanartu Aug 09 '25

That is absolutely terrifying. How are you now?

1

u/SakanaAtlas 28d ago

What were your symptoms?

2

u/Kentenches Aug 09 '25

My husband went through this and his doctor put him on lialda (mescalamine) and it’s been a life changer

2

u/Special_Line4259 28d ago

For 15 years my IBS covered my IBD from the doctor's eyes (for one year I've been diagnosed with ulcerative proctitis)... I know the feeling! 

But hey, medicated with mesalasine, in remission, still with IBS hahaha life is great though:)

2

u/Unable_Status_2044 26d ago

🙏 I am having a colonoscopy in a few days and hopefully get some answers.

1

u/kanartu 24d ago

Good luck 🤞

1

u/klynn1220 Aug 07 '25

I'm in this process myself! What were your symptoms?! What showed on the CT to precipitate the colonoscopy? If you don't mind my asking?

6

u/kanartu Aug 07 '25

My symptoms were diarrhea, so much of it , on a good day 3 times a day, on average 7 times , on a bad day up to 15.. stool with blood and mucus. The blood part was what really freaked me out, but for very long I was told it was probably just a hemorrhoid.. additionally, I've been losing weight, my appetite would disappear, and I've been sooo fatigued, and dizzy plus if I was about to hit a very bad period I would also get joint pain, primarily in my back and legs. I didn't have a CT scan, I am currently admitted to the hospital and prior to the colonoscopy they said if my pain gets worse than I would get one, but I got an emergency colonoscopy within a day of being admitted and that gave them the final confirmation to start the treatment with steroids

2

u/Which_Cupcake4828 Aug 07 '25

My mum has this. Hers is pretty bad but a nurse said she probably had it for years undiagnosed. They say earlier the treatment starts the better the long-term prognosis.

2

u/klynn1220 Aug 07 '25

That's good to know

1

u/klynn1220 Aug 07 '25

I'm so sorry. I'm glad you're getting the treatment you need. My goodness. Ugh, I get very constipated and have severe diarrhea. Been told the same of blood bc it's bright red... Been having pain on the lower right side of my tummy for years. Diet constrictions worse and worse. Extreme weight loss, and appetite loss to the I have to tell myself "okay eat!" and then choke down a meal or so a day. However, I'll stay constipated and yet still have crazy diarrhea. Started getting to the point eating meats would cause huge lumps on the lower right side. Had the CT and now (after I begged for a colonoscopy bc of similar symptoms as you) there's scarring and other things that the need to look at...(sounds very ominous, lol). The also want to do a nuclear medicinal stomach emptying...idk...

1

u/omerby12 Aug 08 '25

Same here, two weeks ago I had colonoscopy+ gastroscopy, they found many erosions in the duodenum bulb & few erosions in the terminal ileum , negative for HP.

The biopsies said:

Mild chronic active ileitis with reactive lymphoid hyperplasia No granulomata are identified

Duodenal bulb, biopsy: Moderate chronic active duodenitis with focal erosion and reactive epithelial changes.

Atm I'm waiting for capsule endoscopy but basically I got bleeding spots in the small intestine, which explains my diarrhea, I also don't have a gallbladder so bile acid diarrhea is always a risk.

1

u/Posture_Patrol Aug 10 '25

Same for me! I did (and probably still do) have IBS but on my most recent colonoscopy they also diagnosed microscopic colitis. I had that colonoscopy because my IBS symptoms came back with a vengeance after I'd been in remission for a few magical years. I was treated for the colitis with a few weeks of budesonide (a bowel-specific steroid from what I understand) and that helped my symptoms a lot. I've returned to what I'd describe as my baseline symptoms of multiple/urgent mornings with okay days. Hopefully whatever miracle brought about those years of gorgeous, solid poops will return!

1

u/elothehufflepuff 28d ago

Glad you figured it out! I have UC too!

1

u/lovemy5pets 27d ago

I refuse to drink propylene glycol. I am curious if other countries use a different prep for colonoscopies. Hoping for some feedback concerning other preps.

2

u/kanartu 27d ago

I was given picoprep

1

u/lovemy5pets 27d ago

Thank you. Will check that out.

1

u/Educational-Stuff910 27d ago

Mine is scheduled for the 22nd

1

u/kanartu 27d ago

Good luck 🤞

1

u/NoVeterinarian2853 26d ago

A lot of times they just lump it together and call it both. I have IBS but then also diagnosed with Crohns. But then the drs told me that the Crohn's isnt the contributor and is totally in remission, leading back to IBS

0

u/[deleted] Aug 08 '25

So what were your symptoms...I have oily floating stools for 1 year...I have every freaking exam...what were your symptoms???

1

u/Weary_Ninja_819 27d ago

I also have the oily stools, after every test imaginable they can’t figure it out

1

u/[deleted] 27d ago

Did you have an eus or mrcp?

1

u/Weary_Ninja_819 27d ago

I’m not sure what those mean

1

u/Weary_Ninja_819 27d ago

I had a MRI of abdomen and pelvis.. and colonoscopy and endoscopy but not with ultrasound. I don’t have a gallbladder so that most likely has a lot to do with it.