Do these symptoms sound like IBD?

[lsgs]

Hi guys,

I've just been having a think. My doctors are arguing over what I have, whether it's IBD or not. We know it is inflammatory now (high calprotectin, good response to pred, but a lot of negative scans in the past, positive stuff has just started coming up) but not what the inflammation is. Rheumatologist says IBD, gastro says another autoimmune disease I have but gastro hasn't seen calprotectin result yet.

I just had a couple of questions about whether my symptoms sound like IBD. I have not to see a doc for weeks and weeks yet and it's driving me mad feeling this low.

Can the diarrhea be 'episodic'? I don't have constant diarrhea, maybe a couple episodes a week and this on 20mg pred. At higher doses my BM's were normal, no blood, and no pain. The current trend at the moment is I have really quite severe pain above my belly button, like being stabbed with a hot knife Then I'll have maybe 3-5 movements getting progressively looser over the course of 20m-1hr. I'll pop an imodium to make the hell stop and it does, then I feel very sore and like I've been kicked in the stomach for a day or so, it's difficult to stand up straight. I'll also not have blood all the time, and it's not a LOT I don't think. It's kind of mixed in. I also feel quite sick when this is going on and I get very shivery and cold. It's horrible!!

Between these episodes though I struggle to go at all. It seems to almost 'build up' to this diarrhoea as gross as that sounds. I am going longer between episodes since I upped my pred again but also more constipated in between as a result. I worry about not being able to go in between these episodes, it's a bit weird. It's only been a problem since going on pred too.

Around August time I had a steroid shot as an experiment and prior to that I was having nocturnal diarrhea too, if I was having an 'episode' I could be up 3 or 4 times during the night for a BM. This has not been a problem since I started on steroids.

My other symptoms are daily nausea and reflux, SEVERE at times epigastric pain after eating (my most troublesome symptom!!) and other things probably more related to my other autoimmune disease (for example joint pain)

I had a 4 stone weight loss last year but my weight has been stable for about 10m, in fact I am gaining due to pred.

Thanks guys I really appreciate any help. On a positive note I have had no diarrhoea for a week and I think that's worth celebrating :lol:

 

[Katjev]

Hi! Hope your well
From what you have described and what Ive experienced and read about myself it does sound like an IBD. I have ulcerative colitis (left side, mild) and short bowel syndrome (seperate operation not due to IBD) I have all the above symptoms but I'm lucky they are milder and don't effect me to much. I don't suffer from chills or fever but this seems like a common problem wih IBD suffers. I hope you find out what you are dealing with soon x

 

[lsgs]

Thanks for the reply

 

[UnXmas]

This is probably going to be really unhelpful, but it's so hard to tell if something is IBD from symptoms. Unless you have all the classic symptoms - which I'm sure you've read of - and/or a strong family history and no other obvious cause, then trying to assess whether it's IBD or not based on symptoms is almost impossible.

So many things could cause those symptoms. Episodic diarhoea certainly could be from Inflammatory Bowel Disease. As could the reflux and other symptoms you mention. It's just one possiblity though.

I think the only thing to do is to go through your tests and results and wait until they come up with something more conclusive. What scans and things have you had so far? I've been hearing a lot about calprotectin, which you mention, here on this forum, but I had been told when I was going through the diagnostic process that the main tests for IBD are colonoscopy and endoscopy with biopsies. Have you had those?

I have no medical expertise at all, just so you know not to take my opinions as fact - I'm sure you wouldn't anyway. I've just been ill a long time with a lot of different conditions, have had a lot of tests and read a lot.

 

[lsgs]

This is probably going to be really unhelpful, but it's so hard to tell if something is IBD from symptoms. Unless you have all the classic symptoms - which I'm sure you've read of - and/or a strong family history and no other obvious cause, then trying to assess whether it's IBD or not based on symptoms is almost impossible.

So many things could cause those symptoms. Episodic diarhoea certainly could be from Inflammatory Bowel Disease. As could the reflux and other symptoms you mention. It's just one possiblity though.

I think the only thing to do is to go through your tests and results and wait until they come up with something more conclusive. What scans and things have you had so far? I've been hearing a lot about calprotectin, which you mention, here on this forum, but I had been told when I was going through the diagnostic process that the main tests for IBD are colonoscopy and endoscopy with biopsies. Have you had those?

I have no medical expertise at all, just so you know not to take my opinions as fact - I'm sure you wouldn't anyway. I've just been ill a long time with a lot of different conditions, have had a lot of tests and read a lot.

Thanks! The trouble is that I had a lot of negative test results previously. My last colonoscopy was 4 or 5 years ago, before I started having these symptoms. I had a flexible sigmoidoscopy shortly after the diarrhoea started (I think) but I now know that wouldn't show a lot (it showed internal haemorrhoids from all the diarrhoea)

Last year I was hospitalised and tested a lot but I had NO diarrhoea then, it was for epigastric pain and weight loss which was caused by a medication supposedly. That included a clear pillcam.

But in summer I started getting new symptoms - more blood, nocturnal diarrhoea, more frequent, more PAINFUL! and that's when they did the calprotectin which was high. The lab result said 'consistent with active GI inflammation'. So to me the situation has changed and I should probably be scoped again, but they have had me on pretty intense steroids and say there is probably no point.

Thank you for the reply, I appreciate what you are saying unfortunately I am a complicated patient and my doctors don't seem to know quite what to do with me. haha.

 

[Jennifer]

Since your symptoms have increased since your last tests then they'll likely show what's actually going on now. A colonoscopy (with biopsies), an endoscopy (also with biopsies since you also have upper GI symptoms) along with a test that will show the small intestines (like an MRE). A pill cam will show images of the inside of the intestines but wont show as much as an MRE can.

You do have some classic symptoms of an IBD like Crohn's such as blood in your stool, diarrhea (remember you're controlling it with Imodium, you'd likely have it more often if you didn't), abdominal pain, nausea, reflux, weight loss and joint pain. Yes any one of these can come and go depending on what's happening inside.

If you feel like your GI is going too slow for treatment let alone a diagnosis then you may want to see another GI that's more proactive. Hope this helps and keep us posted on how you're doing.

 

[UnXmas]

Thanks! The trouble is that I had a lot of negative test results previously. My last colonoscopy was 4 or 5 years ago, before I started having these symptoms. I had a flexible sigmoidoscopy shortly after the diarrhoea started (I think) but I now know that wouldn't show a lot (it showed internal haemorrhoids from all the diarrhoea)

Last year I was hospitalised and tested a lot but I had NO diarrhoea then, it was for epigastric pain and weight loss which was caused by a medication supposedly. That included a clear pillcam.

But in summer I started getting new symptoms - more blood, nocturnal diarrhoea, more frequent, more PAINFUL! and that's when they did the calprotectin which was high. The lab result said 'consistent with active GI inflammation'. So to me the situation has changed and I should probably be scoped again, but they have had me on pretty intense steroids and say there is probably no point.

Thank you for the reply, I appreciate what you are saying unfortunately I am a complicated patient and my doctors don't seem to know quite what to do with me. haha.

I'm a complicated patient too. It does suck sometimes when you just want answers!

I think Crabby's advice is right. If you're symptoms have changed, it calls for retesting or further testing.