Does this sound like Crohn's? Has anyone had an experience like this?

[Zachattack]

Hi all,

I've been having problems with cramping and bloating and awful gut pains for over a year now. I first noticed I couldn't really tolerate hard grains like bulgur about two years ago, and the bloating largely went away. It came back last year and I thought, 'Maybe my problem's gluten,' so I went gluten-free and my symptoms went away for a bit. But this spring the bloating and pain have returned despite no gluten, and I'm now having what I strongly suspect are bloody stools. I am on an iron supplement, but my stools have been black for ages, so that predates the iron supplement. My naturopath strongly suspects it's Crohn's, and I'm going to my GP next week to ask for testing.

My mom has UC, so there's definite IBD in my family history. I've been getting weird eczema like rashes on my legs all winter, I have asthma, anemia, a B12 deficiency, and difficulty absorbing nutrients. I'm also prone to depression. My mom says the doctor thought I may have had Crohn's when i was little because I was prone to diarrhea, bloating and an upset stomach, but my stomach problems cleared up, so I was never tested.

The only thing is, I don't have lots of diarrhea now. I usually only have one BM a day. It's usually loose and sometimes diarrhea, but I'm not running to the toilet all the time. I do, however, get extreme gut pains and bloat like crazy and it feels like i'm really heavy and weighted down at the top of my abdomen. Could this still be Crohn's?

Has anyone else had a similar experience like this before they were diagnosed?

Thanks for your help. I'm just really sore, don't know what's causing it, don't know how to make it better, and I just want to get a bit of relief or at least figure out what the problem is.

 

[DJW]

Hi Zachattack and welcome. It looks like your pic was taken on the Go train?
I'm glad you're going to the doc. Have you tried keeping a food journal? Hopefully that will help you identify problem foods.
It been years since I was diagnosed. I'm sure someone will be along soon who can better relate to your situation.

Hope you get some answers soon.

 

[Zachattack]

Hey Dave,

Yup, it was!

I started keeping a food journal this week so I can figure out what sets me off. I know gluten definitely does, but not sure about other things. I thought tomatoes were a problem but yesterday I ate them and was fine. I think corn may be a big trigger. I'm wondering about cruciferous veggies too - but I love them so I hope not

Anyway, thanks for the reply. Hopefully I get this figured out soon.

Cheers,

Zach

 

[Cat-a-Tonic]

Hi Zach, welcome to the forum. Not everyone with Crohn's has crazy diarrhea (some even have constipation or normal stools) so not having a lot of d wouldn't automatically rule out Crohn's. You mentioned a rash on your legs - my first thought was that maybe it's erythema nodosum, which sometimes occurs with Crohn's. Take a look at this link and see if this sounds like what you have going on:
http://www.crohnsforum.com/wiki/Erythema-Nodosum

You also mentioned possible bloody stools - have you talked to your doctor yet about that? They can do what's called a fecal occult blood test, which can check your stools to see if there's any blood (even if you can't see it, there still could be blood in your stool, and this test can find it).

What testing are you going to ask for when you see your GP? Are you also going to ask for a referral to a GI? If your GP is good, they should be able to run some tests (my GP can do bloodwork, stool tests, and colonoscopies) but a GI is a specialist and should be able to know and do much more. Good luck next week, I hope you get somewhere worthwhile with the testing! Keep us posted.

 

[Zachattack]

Hey Cat-a-tonic,

That definitely sounds like what I had on my leg. It was on my right leg and was really irritated and was there for between 2-6 weeks. I'll mention this to my doc.

You mentioned constipation - sometimes I get this really badly and there was a good week and a half when I was about 10 that I just couldn't go and when I finally did there was lots of blood. It hasn't been that bad since, but I still sometimes have days where I'll be really backed up. It was hard to go this morning.

I haven't yet talked to my doc about the possible bloody stools but definitely plan to on Monday. I had no black stool today and I took my iron yesterday so I don't think it's my iron that's causing them at all. It does sound to me like it's just plain bloody stool. I'll ask for the FOB test for sure. I was planning to ask for a colonoscopy or endoscopy (I feel like the problem is closer to the top of my small intestine because I usually get pain up top in my abdomen), blood tests and a stool test. I think it's really important I get this done especially because of my family history of IBD. I just want to figure out what the problem is. I may ask for a referral to a GI if she can't figure it out or is hesitant to test me. Or should I just ask for one anyway? What do you think? And is a colonoscopy or an endoscopy better to ask for in my case, or should I ask for both?

Thanks so much for your help

 

[Cat-a-Tonic]

If it were me, I'd ask for a GI referral either way. Personally, my GP is great and he believes I have some form of IBD, but he can't diagnose me because he's just not an expert in that particular field. A GI is the way to go for sure - if the colonoscopy & endoscopy end up not finding anything and you want your small intestine checked via something like an MRI or pill cam, you would need a GI to order that type of test. A GI is able to prescribe IBD meds as well - I'm still technically undiagnosed myself, and after I had been through a gamut of tests with "inconclusive" results, my GI decided to try me on a trial of some IBD meds, and they worked well and got me into remission. So yes, regardless of how it goes with your GP, I would still ask for a GI referral too.

You mentioned low B12 and anemia in your initial post, so I'm presuming you've had some bloodwork done recently? Have they done any blood work to check your inflammatory markers? If not, I'd ask the GP to do those as well - the ones to ask for are CRP (C-reactive protein) and ESR (elevated sed rate). If there's inflammation anywhere in your body, it should show up on those tests (they're not 100% accurate - about 10% of the IBD population will have normal CRP and ESR all the time, even when in a terrible flare, but for most IBD'ers those tests can be pretty informative).

 

[Zachattack]

OK, I'll make sure to ask for a GI referral either way. Thank you for letting me know That's super helpful!

Bloodwork is about six months old, so yup, kind of recent I guess. That's when I decided to take iron and B12 and I noticed they helped a bit with energy. (Cutting coffee out helped more though.) As far as inflammatory markers go, I don't think they've been checked, no. I'll ask for CRP and ESR tests.

Thank you!!

 

[Togashi Deckard]

Your experience with symptoms sound a bit like mine when I first came down with Crohn's, so I wouldn't rule it out. Hoping for the best.

 

[Zachattack]

So my doctor thinks it's an ulcer and is treating it with losec for the moment... if it doesn't clear up in a few weeks she's going to order a scope. I'm also having stool testing for blood and h pylori and my blood is being screened for that along with my iron, B12 and a complete panel. I'm a bit annoyed she didn't just order a scope, but I guess I'll wait and see. I didn't have bloating or pain yesterday after i took the meds, but they did make my stomach feel stretched, if that makes sense. I decided if I have any symptoms like I was having before, I'm going to the ER.

 

[Hunt]

Best of luck with this buddy, a scope will most definitely confirm any diagnosis if not as mentioned above an MRI will clarify it.

 

[Zachattack]

Thank you all

 

[Zachattack]

Currently at work and bloating and pain are back hardcore. Sounds like I'm heading to the ER after work.

 

[Zachattack]

So I did it! Last night I was having awful bloating, bad pain and diarrhea. So I took myself to the ER. And after two nurses who kept implying I shouldn't be there and was wasting people's time, I saw a really great doc who told me she's referring me to a GI to get an upper and lower scope, and that she thinks my doc was wrong in diagnosing it as a peptic ulcer.

I've got a giant rash on my legs today (all bleedy and it looks like I was pricked over and over by pins), and my eye is all itchy, red and weepy today. Something is very wrong and needs to be checked, and I know I wasn't getting anywhere with my PCP. I know I probably won't get in to see the GI for weeks, but this is still better than where I was before. Feeling empowered and a bit better, but still ouchy.

 

[n_julia]

what an awful ER experience. It shows how people can be so ignorant when it comes to invisible illness! i was recently diagnosed with Crohns after being not listened to/misdiagnosed for years, so I know how you feel. I would tend to suffer from the consitpation rather than D side of things, so not everyone has the same symptoms. Hope you get some answers soon and start to feel better! My colonoscopy showed up severe inflammation/ulceration of my ileum which was not accompanied by any D. My main symptoms are pain/bloating/nausea/fatigue

 

[Zachattack]

Right?! It really does. My partner has done a lot of critical disability studies work in her thesis around invisible illnesses/disabilities and the whole time I sat there I kept thinking how right she is. Luckily my partner was there to support me and help tell the nurses what was what.

Lots of great stuff on butyoudontlooksick.com about this, too.

Those are my main symptoms, too. I feel like sometimes people are like, 'Oh, well if you aren't running to the toilet 20x a day, there can't be anything wrong with you.' But my body is telling me something is not right.

Thanks a ton for your reply n_julia

 

[Zachattack]

Got my GI appointment! Heading in for a consult (and then hopefully some scopes to figure out the problem) on July 8. Sore and tired but feeling good because this is a move towards feeling better!

 

[D Bergy]

You have a lot going on besides a possible food allergy, but my wife bloats whenever she eats any kind of dairy. It did not always bother her but now it does.

Maybe something to look at. May help the bloating, but there is more going on.

Good luck.

Dan

 

[LE30]

Zachattack glad it sounds like you are closer to getting things looked at. Did you ever get results back on the stool test looking for blood?

 

[Zachattack]

Hi all, an update:

I went to the doctor this morning. It's not a peptic ulcer! My tests came back clean for h pylori, which is great. I'm coming off the losec, since my family doc feels it's not helping much and since h pylori isn't there, acid probably isn't the problem. So that's ruled out.

The GI, who I saw yesterday for the first time, is screening my blood for celiac; my doc wants him to order a scope for IBD if it comes back negative so we can also rule that out. I'm staying on gluten for now and high fibre foods to see what happens.

My family docs has changed her tune and seems to think it isn't celiac, since I don't always react to gluten, and said today it could be a sneaky, mild crohn's higher up in my small intestine (explains the dark stools, which celiac does not) but she wants to rule celiac out first as well. She seems pretty concerned. She said she may just order a scope herself if the bloodwork comes back clean and he doesn't want to screen for IBD. I am hoping, with my family history, that he will be a bit smarter than that. She also thinks it probably is not IBS considering high fibre foods bother me and that probiotics are good for IBS, and I was taken off them.

I'm seeing the GI again on the 29th for a follow-up to see what's come back in my tests, if anything.

So I still don't know what it IS, but something's ruled out, so that's a step...

D Bergy: dairy has been a problem for me since childhood - I find it aggravates my asthma along with giving me diarrhea, so I avoid it at all times... And still with the diarrhea., even with no dairy.

 

[Zachattack]

Should also mention that my liver tests came back fine, but my iron is very low as is my b12.

 

[Zachattack]

And I am STILL having undigested food in my stools.