Diagnose me PLEASE, may be TMI

[kiminky]

I have had persistent diarrhea for over a month, at least 6-7x/day. Typically no cramping, bloating, etc. Just a general unsettled feeling in my stomach. I did start experiencing some cramping in the last 2 days that dissipated over about an hour or two. I have not had any changes to my diet or meds (except I have discontinued taking Ambien). I do not eat much dairy except for 2 pieces of string cheese that I eat with my lunch every day that I have done for well over a year.

I went to the doctor a week and a half ago, they seem a bit stumped and scheduled me for a CT scan to check for diverticulitis as a last resort (which is a week from now).

I had a similar bout of persistent diarrhea about 3-4 years ago that lasted for months and had a lot of testing that showed nothing and it eventually went away.

I am miserable and am starting to feel a bit weak and light headed and am drinking electrolytes, but nothing lasts in my system long.

No fever.

[ssmjlm]

I had something similar and was diagnosed with ulcerative colitis in October. I was having persistent diarrhea from April and finally went to the doc.

They did bloodwork, stool samples, and a colonoscopy. I never have had blood in my stool.

I have no family history and it just came on one day. I thought it was related to a new migraine med, but it stuck around. Diet changes did nothing.

I’m surprised they haven’t done a colonoscopy. That was the first thing my Gastro ordered.

[Saudade]

How are they stumped without a colonoscopy?

[callalily]

You 110% need a colonoscopy and to see a GI. Just like SSM, I had did stool samples, a colonoscopy etc and was diagnosed with ulcerative colitis after months of persistant diaherrea. Given how bad you are starting to feel, I would really recommend a GI.

[cville]

Girl. Get a colonoscopy asap.

[orangello]

Get a colonoscopy. The prep isn’t fun, but it’s tolerable.despite what the internet says. Good luck!

[kiminky]

May 13, 2024 17:47:48 GMT -5 ssmjlm said:

I d something similar and was diagnosed with ulcerative colitis in October. I was having persistent diarrhea from April and finally went to the doc.

They did bloodwork, stool samples, and a colonoscopy. I never have had blood in my stool.

I have no family history and it just came on one day. I thought it was related to a new migraine med, but it stuck around. Diet changes did nothing.

I’m surprised they haven’t done a colonoscopy. That was the first thing my Gastro ordered.

I had a colonoscopy in 2016, it was normal. I did Cologuard about 6 months ago, that was normal, but I know they are not as reliable.

[kiminky]

May 13, 2024 17:50:31 GMT -5 Saudade said:

How are they stumped without a colonoscopy?

It just felt like she was asking so many questions and in the end she was like, well,I guess we'll try CT scan. It was a frustrating visit.

[coltsfan85]

I had similar symptoms when diagnosed with crohns (though mine was exacerbated by a medication change). My recommendations for a colonoscopy are as follows:
1) get a GI consult. This is beyond a PCP diagnosis in my experience.
2) I prefer the miralax and Gatorade prep. Some people like suprep. I’m not a fan of golytely at all
3) baby wipes with aloe are helpful both pre-colonoscopy and during the prep
4) soft toilet paper is a must during the prep
5) bribe yourself with a loved show or a new show to watch during prep.
6) you’re already having diarrhea 6-7 times a day so you’ll be shocked at how “normal” the prep feels honestly.

Good luck!

[circa1978]

I assume you aren't on any meds that causes GI upset?

[havarti]

My doctor told me some people develop a sensitivity to nightshades and legumes. I’ve cut out stuff like tomatoes, potatoes, lentils, beans , soy, etc. and am pretty much back to normal. I can still have very small, occasional amounts, but not like lentil soup or a baked potatoe.

[timorousbeastie]

This is definitely a long shot, but by any chance have you ever been bitten by a tick? A family member of mine has been dealing with something similar. After colonoscopy, meds, trial and error with diet, his GI doc and his allergist are thinking it could possibly be alpha-gal syndrome, which is an allergy to mammalian meat caused by a certain type of tick. (He’s still waiting on the results of that bloodwork, though, so it may not be what he actually has). While he’s waiting for results, he has found that a seafood diet and lots of Metamucil help him a lot. Apparently the allergy can result years after the tick bite, so it wouldn’t even have to be a recent bite for you.

But definitely go see a GI; you really need a specialist for something ongoing like this.

[kiminky]

May 13, 2024 18:40:58 GMT -5 circa1978 said:

I assume you aren't on any meds that causes GI upset?

Not that I know of. A few years ago when this happened I stopped taking Magnesium in case that was causing the problem.

[luckystar2]

May 13, 2024 19:13:30 GMT -5 timorousbeastie said:

This is definitely a long shot, but by any chance have you ever been bitten by a tick? A family member of mine has been dealing with something similar. After colonoscopy, meds, trial and error with diet, his GI doc and his allergist are thinking it could possibly be alpha-gal syndrome, which is an allergy to mammalian meat caused by a certain type of tick. (He’s still waiting on the results of that bloodwork, though, so it may not be what he actually has). While he’s waiting for results, he has found that a seafood diet and lots of Metamucil help him a lot. Apparently the allergy can result years after the tick bite, so it wouldn’t even have to be a recent bite for you.

But definitely go see a GI; you really need a specialist for something ongoing like this.

So I think I got this many years ago before it was more well known (no test for it at the time). I didn’t think I was bitten by a tick (but many people have it and never knew they were bitten). But all of a sudden developed horrible GI symptoms and finally was able to figure out it was after eating red meat. The difficult part of figuring it out is that usually the GI symptoms from alpha gal syndrome are delayed by a couple hours. It’s definitely worth thinking about your diet to see if there’s any things that are consistent that you could potentially link it to (even if they never caused problems before). I didn’t eat a ton of red meat so it wasn’t happening every day. I finally realized that every time I’d eat red meat I’d have GI symptoms hours later. I finally stopped eating red meat and it stopped for the most part. I’d still have reactions due to cross contamination at times. Some people have to cut out everything that has alpha gal and others are less severe. Removing red meat was enough for me.

My guess though would more be ulcerative colitis or crohns. I know somebody who had issues come out of nowhere that was diagnosed with one then changed diagnosis to the other.

I would get a referral to GI specialist.

[cap]

May 13, 2024 18:27:45 GMT -5 kiminky said:

May 13, 2024 17:50:31 GMT -5 Saudade said:

How are they stumped without a colonoscopy?

It just felt like she was asking so many questions and in the end she was like, well,I guess we'll try CT scan. It was a frustrating visit.

As a person with two "pooping diseases," I had a feeling this was going to be about poop when I read the title. 

You definitely need to be seen by a gastro and have a real colonoscopy, complete with biopsies. I've had ulcerative colitis for 14 years and I was diagnosed with microscopic colitis about 18 months ago. In general, it's unusual to have ulcerative colitis with no pain, cramping, or bleeding, but when I was diagnosed, I was in a severe flare (entire colon affected, 20+ bouts of diarrhea a day, and rapid weight loss) and had no pain or bleeding. I did have cramping, though. With microscopic colitis, it's just persistent diarrhea. Ulcerative colitis will show up during the actual scope - there are visible ulcerations. With microscopic colitis, it's only seen (as the name implies) when the biopsies are viewed under the scope. 

I'm not saying that you have either of these, but they definitely need to be ruled out. 

[AAM2012]

May 13, 2024 18:16:49 GMT -5 orangello said:

Get a colonoscopy. The prep isn’t fun, but it’s tolerable.despite what the internet says. Good luck!

Definitely tolerable …and probably better or on the same page as diarrhea 6-7/x day

OP please go to a gastroenterologist, they should recommend an upper and lower GI work up. Also recommend they do blood work and test for celiac.

[fluffycookie]

This was very similar to DS. It came out of nowhere. He had blood work, stool samples, colonoscopy and endoscopy was diagnosed with ulcerative colitis. I would get to a GI.

[FastHands]

Did you have a stool sample tested? I had similar issues years ago and it was a particularly heinous salmonella infection. They did a stool sample and testing took several days to come back and then they didn't call to tell me because they said salmonella generally resolves on its own in a few weeks so they figured I was already improving. I checked my mychart and saw the result and followed up to say I was still dying. Started abx and was normal in abt 48h.

[minzy]

I agree with the others and think I would start with trying to get into a GI specialist and for a colonoscopy. Not already mentioned, and this is based more on my own family stuff right now than maybe your particular symptoms, but I have been thinking a lot about pancreatic cancer. Are your stools lighter colored? Do they sink or float? (If lighter and floating there may be more fat, potentially indicating the pancreatic enzymes aren’t doing their job.) Hopefully if it is that, it would appear on the abdominal CT scan you already have scheduled. I’m sorry you’re not feeling well and hope it’s something you can get under control quickly.

[wanderingback]

This is what kind makes me upset about healthcare in the US. Chronic diarrhea is totally something that primary care can start the work up and help people! There’s no need to jump right to a specialist which costs more money and specialists need to be saved for more complicated cases. Blood work, fecal calprotectin and a stool sample are the starting points. Nowhere in the work up if it’s purely diarrhea is a CT. Then after the blood work and stool samples consider a colonoscopy. OP I hope you feel better and get answers soon.

[scout8]

I had this happen a few years ago. My PCP did blood work and a stool sample. When that didn't show anything, she referred me to a GI who did a colonoscopy. Nothing showed up on the colonoscopy either. I eventually just got better.

[kath16]

just offering that i have been battling all sorts of GI issues without a diagnosis until my entire team of drs (primary, GI, nutritionist) put together that i basically have long COVID that manifests as IBS

so, that's a thing. they said they're seeing more and more of it.

BUT to get there, i had a full workup: blood work, ultrasounds, endoscopy, colonoscopy to rule out anything else. please do that.

[fortnightlily]

May 14, 2024 6:45:50 GMT -5 wanderingback said:

This is what kind makes me upset about healthcare in the US. Chronic diarrhea is totally something that primary care can start the work up and help people! There’s no need to jump right to a specialist which costs more money and specialists need to be saved for more complicated cases. Blood work, fecal calprotectin and a stool sample are the starting points. Nowhere in the work up if it’s purely diarrhea is a CT. Then after the blood work and stool samples consider a colonoscopy. OP I hope you feel better and get answers soon.

Seriously. I contacted my PCP about IBS flare ups and she recommended I see a GI, but, there are GIs in the same practice. Had there not been she might've done it herself. Hard to say because the IBS isn't new, just worsening. Though the GIs didn't have any available appointments for 3 months so I saw the GI Nurse Practitioner. She ordered exactly that work up: bloodwork, fecal calprotectin, stool test for parasites and whatnot, plus a SIBO breath test kit, and then scheduled a colonoscopy since I'm in my early 40s anyway.

[laurack]

May 14, 2024 6:45:50 GMT -5 wanderingback said:

This is what kind makes me upset about healthcare in the US. Chronic diarrhea is totally something that primary care can start the work up and help people! There’s no need to jump right to a specialist which costs more money and specialists need to be saved for more complicated cases. Blood work, fecal calprotectin and a stool sample are the starting points. Nowhere in the work up if it’s purely diarrhea is a CT. Then after the blood work and stool samples consider a colonoscopy. OP I hope you feel better and get answers soon.

But she said her doctor is “stumped” and ordered a CT as a first step instead of ordering a colonoscopy which seems odd. Maybe that’s why people are suggesting she see a specialist.

[picksthemusic]

I would see if you can get a referral to GI if you haven't done it already.

Does Imodium help? Fiber supplements? Pepto?

If you are on metformin for any reason (whether diabetes or PCOS or whatever), see about stopping that. I had persistent diarrhea, stopped my metformin, and boom. Normal stools again.

ETA: If you haven't tried it yet, you could do a FODMAP diet to see if that helps as well.

[wanderingback]

May 14, 2024 15:01:49 GMT -5 laurack said:

May 14, 2024 6:45:50 GMT -5 wanderingback said:

This is what kind makes me upset about healthcare in the US. Chronic diarrhea is totally something that primary care can start the work up and help people! There’s no need to jump right to a specialist which costs more money and specialists need to be saved for more complicated cases. Blood work, fecal calprotectin and a stool sample are the starting points. Nowhere in the work up if it’s purely diarrhea is a CT. Then after the blood work and stool samples consider a colonoscopy. OP I hope you feel better and get answers soon.

But she said her doctor is “stumped” and ordered a CT as a first step instead of ordering a colonoscopy which seems odd. Maybe that’s why people are suggesting she see a specialist.

Yes I understand, hence my comment. Primary care doctors are overworked and underpaid. So it’s frustrating that they (for whatever reason) aren’t always doing the basic work up for things and then people think that specialists are what should be needed/expected.

[definitelyO]

I cannot find it right now - but I just yesterday saw a reel where the woman had similar symptoms and her ovary had adhered to her intestine.


Bloating, diarrhea and abdominal pain are three of the most common symptoms of ovarian cancer. They're also some of the easiest to overlook. Perhaps it's because they can also be signs of so many other conditions, including indigestion, a stomach virus, and even the cramps that can accompany a woman's menstrual cycle.

[laurack]

May 14, 2024 16:40:10 GMT -5 wanderingback said:

May 14, 2024 15:01:49 GMT -5 laurack said:

But she said her doctor is “stumped” and ordered a CT as a first step instead of ordering a colonoscopy which seems odd. Maybe that’s why people are suggesting she see a specialist.

Yes I understand, hence my comment. Primary care doctors are overworked and underpaid. So it’s frustrating that they (for whatever reason) aren’t always doing the basic work up for things and then people think that specialists are what should be needed/expected.

Oh I misunderstood, I thought you were admonishing people for suggesting she see a specialist. My PCP also doesn’t deal with specialty - anything beyond basic stuff I am sent to GI, OB, breast speciality, orthopedic. I do find it challenging at times as I then have to pay extra copays. But I can’t blame the pcp if they have too many patients and can only give me 10 minutes of time.

[kiminky]

May 14, 2024 15:09:45 GMT -5 picksthemusic said:

I would see if you can get a referral to GI if you haven't done it already.

Does Imodium help? Fiber supplements? Pepto?

If you are on metformin for any reason (whether diabetes or PCOS or whatever), see about stopping that. I had persistent diarrhea, stopped my metformin, and boom. Normal stools again.

ETA: If you haven't tried it yet, you could do a FODMAP diet to see if that helps as well.

I did stop any Melatonin after coming off of Ambien when the symptoms started, but I wasn't taking much.
Ammonium, etc does not help.

[kiminky]

I have my CT scan next Tuesday intended to check for diverticulitis. I was able to get an appt with a GI doc on 5/28.

Many are telling me prep for colonoscopy isn't too bad. I know, I did it once in 2016.

I know I said diagnose me, but the responses mentioning pancreatic and ovarian cancer are scaring me quite a bit. Although,I want an answer to the issue and some resolution.

Thanks everyone.