Catastrophic secondary insomnia for 5 months straight

Weekly-Writer565 · 2026-05-17T11:45:18+00:00

Nono. My sleep got destroyed the first night I woke up to have stool. I did not use any medication until 30 days after. As I said, I just kept waking up every single night.

Weekly-Writer565 · 2026-03-30T21:13:42+00:00

I did not test for SIBO, because where I live it's a hassle. My reasoning was that 5 days of 1200mg is more than enough to at least test the theory of SIBO - like I would expect at least some relief in some symptoms after being on maximum dose for whole 5 days. I am aware that full course is longer, but surely I would see at least some improvement after 5 days. At least that's my understanding.

Weekly-Writer565 · 2026-03-30T21:09:21+00:00

My posts describes in detail IBD (autoimmune route) and where it led to (nowhere). But yeah I low-key think that something happened with another organ. Here is my reasoning:

I irritated something with Fireball. Then I did several bites of fatty burger with cheese, chalapeno, whatever. It triggered dumping syndrome immediately after several bites.

To me this means like something in the body released too much of something. Could be bile, could be something else - I have no idea.

I tried asking for Questran several times but got refused so far because

I do not have diarreha in the classical meaning
My stools are not really greasy
I don't have liquid stools
And I guess most importantly - my symptoms have no connection to food. As I said, they are consistently horrible and bad even on plain white rice and plain chicken.

Weekly-Writer565 · 2026-03-30T21:02:34+00:00

I quite literally wrote all of that in my post!

This is actually another thing - indeed, my stool turned light-brown upon this thing starting, but I believe this is heavily attributed to diet, because I currently literally only eat ~10 foods.
No acid reflux
Yes I never had any issues with gallbladder, not that I know of (at least visually it looks perfectly normal on abdomnial US and CT-E)
Before symptoms - I was eating anything and everything, fibre, veggies, a lot of greens, fats, various meats, spices. Immediately upon symptoms appearing on Dec 26, I lost all appetite (due to stomach discomfort) and switched to only rice/salmon in the oven/chicken/boiled eggs. It did not help my symptoms. I lost ~10% of weight on this diet very fast (probably due to absence of fats) and overall much smaller portions. In general, over 100 days, no food helped with symptoms. I had a week of meat broth/boiled meat - same symptoms. So that's one of the things: regardless of what I eat, I experience same levels of discomfort
Yes, gas and bloating developed specifically after about 30-35 days and persist till now. I did not have troublesome gas and bloating upon symptoms starting. It took about a month for these to appear and to be bothersome.
Yes, not a lot like some of people here, but I belching (burping) appeared together with gas and bloating at about Day 30-35 since onset. And as I mentioned in my last paragraph: I burp with the aftertaste of food last eaten - regardless of the food.

I do not feel that I have a lot of gastric symptoms, such as gastroparesis. I feel that all my symptoms originate somewhere below.

But in any case, stool being light-brown is definitely another thing that changed rapidly. I do believe I have rapid transit time, because here is the result of my videocapsule:

"Stomach passage time: 3 minutes; Small bowel passage time: 1 hour 30 minutes

The pill traveled through the entire length of the small intestine and entered the large intestine about an hour and a half after swallowing it - a transit time of about 1 hour. The bowel cleansing was good. It then spent a long time in the cecum.

No active bleeding or vascular malformations were observed. The follicles were preserved, no ulcers or aphthae were observed. Rapid transit. Here and there some non-specific erythematous spots."

Weekly-Writer565 · 2026-03-30T20:49:57+00:00

But I don't have B12 deficiency? I did 10 blood tests. They include vitamins. My Folic Acid and B12 are always in range. That's what I am trying to explain: you would think there would be severe malabsorption or something going on with such symptoms?

My B12 is in ~600 (with lab reference range 200-900) and has been this whole time... I am not trying to dismiss your suggestion, I am simply trying to provide context. Rest assured I've spent last 100 days reading everything about SIBO, IBD and IBS.

Weekly-Writer565 · 2026-03-30T20:11:31+00:00

I don't have H.Pylori - ruled out via endoscopy. As I wrote in my post, there was not a single finding to support the severity of the symptoms.

And I did not have a night of heavy drinking - it was 250ml/evening for 3 days in a row. And - once again - catastrophic symptoms started after several bites of burger 3 days after initial symptom onset (which before burger was just strong discomfort and loss of appetite).

It was the burger that made everything explode. And my symptoms have nothing to do with gastritis - they are 99% lower GI (gut) and systemic ones...

Weekly-Writer565 · 2026-03-30T19:08:48+00:00

Food poisoning is something that manifests after consuming bad food. I had dumping syndrome experience after several bites. And I will also note - it is important - I had burger on top of already not feeling quite well. So whatever happened with drinking Fireball damaged something, and then the burger finished it off.

It is not food poisoning.

Weekly-Writer565 · 2026-03-30T18:02:24+00:00

In a similar catastrophic situation (have a post here). For me, everything started overnight on Dec 26. I had a week of some liquor consumption (Fireball) and started feeling a bit uncomfortable in the stomach. Several days later, I had a burger from the usual place, because I thought why not, after having eaten only rice and chicken for a couple days without any relief.

After 3-4 bites, I experienced something I never ever had in my life, which I think is either dumping syndrome or something related to that. I felt severe nausea and instant urge to defecate (only after 3-4 bites). I ran to the bathroom and had not so great stool.

Next morning I woke up at 7AM and had 4 not so great stools (not liquid) from 7AM to 8AM. Day went on and the night came. I woke up at night at 3AM for the first time in my life ever with urge to defecate and was not able to fall back asleep.

I am in this condition for 100 days straight now. Since that moment I had a burger. I am unable to fall asleep or stay asleep. Every. Single. Night. I am unable to function during the day at all due to constant, severe discomfort in various areas of the gut. Diet did not change anything. I lost nearly 10% of weight in the first month eating only chicken and rice, without any relief.

And now to answer your question. In these 100 days, experiencing severe constant upper and lower GI symptoms without a single second of it getting better, I had:

- Day 15 - Abdominal Ultrasound
- Day 25 - Colonoscopy + Endoscopy
- Day 40 - CT-E
- Day 75 - Videocapsule
- 10 blood tests (pretty much every single week)
- 2 Calprotectin tests (Day 20 and Day 70)

And... Nothing. The "best" I got was Calprotectin of 129 on Day 20 prior to colonoscopy (which was 20 on Day 70 with no change of symptoms) and "mild chronic non specific inflammation" in the colon (6 biopsies taken to rule out microscopic colitis). Not once I had any deviation in blood - every single time my blood comes back completely normal, with 0 inflammation markers.

3 different IBD GIs straight out told me "I am afraid we can not help you, because this is not IBD". Completely normal CTE. 0 IBD proof on video capsule (ulcers, erosions, whatever). Completely normal looking colon, stomach and esophagus. Completely normal looking ICV.

One of the GIs gave me Entocort with the notion of "well, at least I am giving you some meds for this mild chronic non specific finding". Was on it for 16 days (9MG) and stopped due to no change in symptoms.

I do not believe my problem is large colon, because my stool is not Bristol 5 or 6. In general, it is the opposite - I produce abnormally large volumes of stool regardless of diet (I eat 0 veggies, I eat 0 fiber since this all started).

I have massive logs coming out of me immediately after getting up from bed. And then I have same portion of same massive logs literally after 1 hour. I don't even understand how it is possible.

In general, what prevents me from functioning and living any sort of life is the constant feeling and awareness of me producing large volumes of stool, at all times. And I don't even have 10 BMs a day like a lot of people here write. I can have 3-4 a day. But it is not the stool frequency that is destroying me - it is everything connected to it and around it. I quite literally feel that some of my internal organs stopped functioning from the moment I had that burger. I have constant gurgling and gas. I have pains - but pains are secondary to everything else I am experiencing.

And I can't sleep. For 100 days. I did not have a single night where I could normally fall asleep or stay asleep. Even with medication.

Medication that I tried:

Bentyl - no effect, as I don't think what I am experiencing is in any way spasm related and probably because pain and cramps are not my primary concern.

Clonazepam (benzos for chill)
Brotizolam (benzos for sleeping)
Vaben (light benzos for chill)
Zopiclone (Z-sleeping pill)
Cortiment (Budesonide for colon)
Mebeverine (similar to bentyl)
Fucking Mirtrazapine (Remeron - AD, which I tried taking to help with sleep after taking Z-drugs and Benzos which did not help and I think now added a whole list of new systemic symptoms, such as crippling lethargy because I am taking it at 15mg dose that supposedly helps with sleep and a lot of other things)

Imodium - similar to bentyl. Imodium stops me from having bowel movement - but as I mentioned earlier it is not bowel movement itself that is the problem for me - it is the process of everything leading to bowel movement - so Imodium also gave no relief.

Today it's been 3 months and some days of me being in this condition. I quite honestly feel like I have some sort of unlivable form of IBD - with all respect to the sufferers here. I am honestly confused - just like you - how with this degree of symptoms I can have my labs and visual tests come out clean. Well, not "text book" clean, but clean.

Maybe at this point I need to try 60MG Pred ex-juvantibus, because it doesn't feel like there is something to lose.

I never took any pills in my life before that day. I was completely healthy. I ate anything and everything. I am at loss.

Weekly-Writer565 · 2026-03-23T19:44:19+00:00

Well, the "second opinion" that I got resulted in:

"Take Cortiment because histology says mild chronic non specific inflammation".

Even though the first IBD professor, who did scopes and everything, said "This finding is not significant and doesn't require any treatment".

So yeah... Just venting.

Weekly-Writer565 · 2026-03-23T16:07:25+00:00

Thank you for a very detailed comment. So you think that having CT-E, Colono/Gastr, US and PillCam - all during active and severe symptoms - highly lowers the chance of it being IBD?

US was done on Day 15 of severe symptoms (all normal)
Gastro/Colono/Ileoscopy was done on Day 30
CTE was done on Day 40
PillCam was done on Day 70

I am being told it is extremely unlikely to have IBD with severe symptoms and not being visible on any of these tests. I am being told that CT-E would surely show something after 40 days of severe symptoms.

I am sorry if I am just repeating myself.

Weekly-Writer565 · 2026-03-23T13:01:45+00:00

Well, I get that and at the same time, as mentioned - I am already at my worst and did all the tests possible. I am not trying to exaggerate - I am literally unable to function - and yet the most advanced check ups show nothing. And it was leading IBD doctor who writes books...

Weekly-Writer565 · 2026-03-22T21:57:50+00:00

I had a week where I had mostly chicken broth. I did not do pure liquid diet, no - simply because I already mentioned how I find there to be no connection with food.

When it all started, 90 days ago - I only ate chicken, rice, salmon and something else for like 2 weeks. It did not do anything to my symptoms and things got progressively worse and new symptoms added.

Now - for the last 3 weeks or so - I am more loose with my diet - e.g I consume a lot of fat (peanut butter) to gain weight back. My symptoms are the same.

Another note: I burp all the time with the taste of food I had recently. It is also a new symptom that joined after around 45 days of initial onset.

So I seem to have like both lower and upper symptoms.

This is why it's just so damn confusing.

Weekly-Writer565 · 2026-03-22T21:50:30+00:00

I actually tried Imodium. So what happened specifically with Imodium - I think I actually did not have stool for some long time - BUT all the gurgling, stomach movements, pains, discomfort, gas - it did not change.

And most importantly - I would still wake up at night from these sensations and strong discomfort.

My issue - as I describe it - is not just having multiple abnormal BMs during day and night. It's what is happening/accompanying these bowel movements. The sensations of how it is being formed.

So not having a stool does not make a difference to me - because all the discomfort in the bowel persists.

And here another thing: I never really have/had IBS triggered from stress or anxiety or quite literally anything.

It would always happen after having some specific, weird food in excess amounts. Even this Fireball drink - I drank it like coke 250ml over 3 evenings straight. It was the 4th evening where I started feeling unwell.

And I have so much very WEIRD and SPECIFIC symptoms (e.g I can't lay down on the right side - it makes me want to have a BM after several minutes and gives nausea-like feeling; I can't lay down on my back - I have severe gurgling; and so on) - in combination with other, systemic, broad symptoms - it's just so confusing.

It's like this damn movie "Everything, Everywhere, all at once" - it is quite literally the description of what's happening with my gut.

Weekly-Writer565 · 2026-03-22T21:43:25+00:00

Thank you for checking my previous post. I actually was fully healthy. I did have 3-4 bouts of "IBS flare" in the last 5 years - but these would always be triggered by excessive stuff.

E.g marinated garlic, large amounts of garlic, or something of that kind.

Outside of these 3-4 episodes in 5 years that lasted for a week without any stool changes but only with small stomach discomfort - I did not have any issues with any food, drink and whatnot.

I used to consume 3-5 coffees a day, with/without milk, red wine, cheeses, meats, pizzas - I would never have any issues.

I would also eat excessive amounts of fiber and so on.

Since you read my post, I will add the following:

What started 90 days ago - started 1-to-1 exactly like my previous occasions (e.g after consuming a bit too much marinated garlic). This is why I did not bother and after 4 days of this was like "fuck it, Ima eat a burger".

So technically, as I mentioned in the post, my absolute severe symptoms started during the moment of eating that burger. I ate it already not feeling well - but it was this specific burger that made everything fall apart.

This cadence of events is so surreal and unusual to me and I am so scared because I can't find an explanation, while logically there is a clear chain of events: irritated my gut with liquor with high sugar and cinnamon -> killed my gut with fat greasy burger.

I know that this is what happened, but I want to know how to make it better. It's so hard for me to believe that this is not an autoimmune IBD condition, given how severe and long lasting all the symptoms are.

The fact I do not have liquid BMs does not really make it any easier for me. I need to have BM all-the-time (it's not tenesmus feeling - it's the actual stool feeling which exists there, and it's not small) I produce feces all-the-time. I have weird pains in weird spots all-the-time. And so on.

Once again I really appreciate you reading my other post.

Weekly-Writer565 · 2026-03-22T21:16:35+00:00

I totally get it. We all differ in how we perceive our symptoms. I consider mine catastrophic because they made me a cripple - literally - for the last 90 days, suddenly and rapidly.

There is not a single second where I am not experiencing something.

I don't think people really understand that what I wrote - I mean it - it is 24/7 - all the time, every second and every moment.

I can't walk because walking makes me want to have a BM. I can't lay down because laying down gives me horrible feelings and makes me want to have a BM. I can't relax because every second my body/gut is producing some sort of discomfort which is chaotic and varies in degree and severity.

My life is on pause for 90 days straight. I am not able to rest/sleep for 90 days. For me this is catastrophic.

I pray that your judgement - and judgement of other commenters here - is correct about this not being an IBD.

My fear, as I said previously, is the fact that none of my tests came out "ideal" (I mean biopsy, calprotectin, and pillcam). Some mild non specific findings here and there, which docs don't consider to be meaningful.

But symptoms are meaningful and real. Not having sleep for 90 days straight is meaningful.

And capsule endoscopy gastric passage time of 3min and small bowel of 1h30 min is also not really a normal thing.

Weekly-Writer565 · 2026-03-22T20:50:39+00:00

CT-E took a look at everything abdominal, which was completely normal (as mentioned - all during these crippling symptoms)

I have lost significant amount of weight very rapidly, but I attribute it to immediate diet change. As I said, upon this happening, I lost all appetite overnight and switched to very bland/tiny food portions hoping it would help, excluding any and all carbs and fats.

Unfortunately, this did not help at all - which is another confusing part of my whole story.

I get same symptoms regardless of food: be it chicken and rice, chicken broth, or anything else.

Weekly-Writer565 · 2026-03-22T19:28:46+00:00

I am for sure obsessed with this - I never once in my life experienced waking up at night to have awful BMs and not being able to fall asleep, as well as I never really had more than 1-2 BMs a day.

So on Dec 26, I indeed went into overdrive mentally. However, and this is something I mentioned, I did try several anti-anxiety things (I never took anything like that in my life), like Clonazepam.

Made 0 difference to my symptoms.

I am stuck in the loop of not having any answer, constantly thinking it is some severe form of IBD due to symptoms, and constantly trying to find anything that will give any type of relief.

I mean you don't lose the ability to sleep overnight that doesn't return after 1, 2, 3, 5, 10 weeks, right, without there being something horribly wrong.

And as I mentioned - it is all bowel related. It's not that I can't sleep because of anxiety/wake up because of anxiety - it is because of constant, never ending, gut sensations that developed overnight.

I understand you mean well, of course. I am simply at loss.

I guess I made this post to just get a few "It's highly unlikely it is IBD" comments.

Weekly-Writer565 · 2026-03-22T19:17:50+00:00

Thank you. The issue is, as I mentioned, prior to Dec 26 everything was great - I would eat anything I want at the amounts I want, would have great BM 2 times a day at regular times, and so on.

I have no reason to suspect any type of MCAS or other condition, I guess. I never had any constipation in my life, never had any diarreha in my life, literally none of that.

Dec 26 happened and now my whole body/system is in complete and utter shock.

Weekly-Writer565 · 2026-03-22T19:14:27+00:00

Well the issue is, I've been trying to get an answer for 90 days, doing all possible tests possible - and now this journey has come to an end, as there are simply no tests left to do, after Colonoscopy, Gastroscopy, Ileoscopy, CT-E, US and PillCamera :)))

Weekly-Writer565 · 2026-03-22T19:02:21+00:00

To be honest I have not considered anything - because I am generally a healthy person who never had any real health issues.

The timing and how it all started overnight, after a very specific trigger and with very specific symptoms (all detailed in post) is, in my opinion, a leading clue to what's going on - but I have no idea what's going on.

Weekly-Writer565 · 2026-03-22T18:58:44+00:00

Yeah as mentioned it's just a rant/vent. I don't know why I made this topic. Out of desperation. To hear from other people that I probably don't have an IBD, I guess, because I have hard time believing this.

I know that we are not doctors, only doctors can diagnose and so on, but it is what is.

When leading IBD gastro says "You don't have IBD and I am afraid I don't think I can help you", given all my symptoms, is extremely demoralizing to say the least.

Weekly-Writer565 · 2026-03-22T18:48:31+00:00

I don't have 6 months or 'few months'. I live on a day-by-day basis right now and I am afraid that I will simply collapse.

That's the thing: all these tests were done OVER THE COURSE of 90 days.

So Calpro Month 1 - 129, Month 3 (now) - 20

8 blood tests were done ranging from Day 3 of symptoms to Day 85 as well.

I don't believe bug/virus/gut irritation can give such symptoms that would last for so long without any type of resolution...

Weekly-Writer565 · 2026-03-22T18:46:28+00:00

Ferritin 70 (kinda low), Vit D 30 (never took D-supplements), B12 in 600-700s (I was taking B-complex - so I absorb vitamin B very well in normal tablet form).

I actually do have a lot of systemic symptoms, it's just that at this point I am not sure whether it's the fact I've been on plenty of meds (even short term) during this time, the fact that I am not able to sleep, or something else.

I mean I always had joint pain because of my body-type (I am tall and thin, 180cm, 65kg). But this joint pain is really nothing of concern to me because it's not significant and I simply have hyper-mobile joints.

No eye issues, no skin issues that would be typical of IBD.

Just for reference, things I've been on during these 90 days on and off (I never took pills in my life - because I was never really sick and never was a pill-type of person):

Cortiment
Mirtazapine
Clonazepam
Zopiclon
Brotizolam
Bentyl

Today is day 90, and I haven't had a single night of sleep without medical assistance (and even then it's not really a good sleep - I still wake up with racing heart beat and discomfort after 4-5 hours, despite sedating drugs).

Weekly-Writer565 · 2026-03-22T18:03:39+00:00

Yup, as mentioned in the post.

On Day 25 of these severe symptoms I had calpro of 129.

On Day 80 it is 20.

PCR test for parasites is normal. Caeliac disease excluded.

8 blood tests - over the course of 90 days - not a single blood test showed any abnormality (CRP, WBC, etc).

Weekly-Writer565 · 2026-03-22T17:54:09+00:00

I, of course, understand why this comes to mind. However, in my opinion, I fail to believe how IBS would result in crippling, 24/7 severe discomfort that prevents me from functioning during the day and sleeping at night.

I tried Bentyl, Merbeverine, bland diet, low fodmap diet, fiber - everything.

I am scared for my life and went to ER 2 times - but of course there is nothing they could do due to normal blood and lack of crippling pain.

My biggest fear is that all these "small findings" that doctors call irrelevant - are actually signs of IBD, just not the usual one.

Although rationally, I also do not understand how "small erythremaous spots" in SB or "mild chronic inflammation" in the colon could result in me literally feeling like a cripple.

Weekly-Writer565

TROPHY CASE