I'm at my wits end, does this sound like Crohns or severe IBS?

[meganwilson1991]

Hi,

I have always had issues with my stomach ever since i got food poisoning when i was 11....my symptoms were diarrhea, mucus, nausea. Im now 24.

It wasnt until a month ago that all these symptoms worsened ten fold. I had such malaise; i was pale, shaky, thirsty, on and off diarrhea, then constipation..then diarrhea again,lots of mucus, terrible upper abdominal pain. Generally feeling awful. The thing is it came and went so suddenly and sporadically that i just dont know what to attribute it to-i was fine one second then doubled over the next and then within an hour id feel ok again...and it just keep repeating.

Im just feeling so low at the moment because i feel all my symptoms cant just be due to IBS, i feel too unwell.

Please help.

History:
loose fluid in pelvis (never told why)
gastritis
negative colonoscopy
awaiting capsule endoscopy

 

[DJW]

Hi and welcome.
That's horrible!
I don't know if mucus is part of IBS. I do know IBD can take awhile to diagnose in some people.

Are you up during the night?

We have a lot of people here in the same situation as you. I'm sure someone will be along.
Check out the Undiagnosed support group.

Sending you my support.

 

[UnXmas]

Mucus can occur with IBS. Though IBS is not really one single condition, it's the name for digestive symptoms which can't be attributed to any other medical condition. Basically a change in digestive function when there's no objective positive test findings. A lot of people get misdiagnosed with IBS before going on to be diagnosed with another condition.

Do you feel these recent symptoms may be due to a different condition than your long-standing ones? Did you have a fever at all?

The capsule endoscopy will be very useful for diagnosing you, or at least it will rule many things out. Did you have an upper endoscopy to diagnose the gastritis?

Crohn's is just one of many possibilities though. It's not a case of Crohn's or IBS as it's a lot more complicated than that. Do you have a good doctor? What are his/her thoughts?

 

[meganwilson1991]

Thanks for all your replied, i cant stop crying, its so depressing feeling unwell.
I awoke the other night from severe stomach pain but that was a one off, in general i can sleep through the night.
I feel that this is different from my long standing issues, i felt feverish but i never actually checked my temperature so im not too sure. Its been going on a month yesterday but feels so much longer and this is of course on top of my general stomach issued which rear their head constantly.
yes i had an upper endoscopy which dx the gastritis which they biopsied and said wasnt caused by h pylori but didnt offer any other reasons why i would have it.
my doctor is good at referrals but said that if this capsule endoscopy is clear then 'it is what it is'...i refuse to feel like this anymore.

 

[UnXmas]

The capsule endoscopy is a thorough test, and a good one for detecting IBD, but as you're already discovering, finding the cause of symptoms can be tricky, even when the symptoms are severe. A capsule endoscopy does not cover all causes of digestive symptoms though, there is more that can be done.

Were the colonoscopy and endoscopy done after these worse symptoms come on? Are your blood tests normal?

I think you may need a doctor with more determination and concern for your well-being. Are you seeing a gastroenterologist? Have you tried many treatments? Even without a diagnosis they can try and help you with symptom management.

 

[meganwilson1991]

no the colonoscopy and endoscopy were done before the onset of these more severe symptoms, the endoscopy was done because i had a few months where i was throwing up after meals...that has since settled.
blood tests are all normal and i had a bunch done only 2 weeks ago, but the were just full blood count etc, nothing that specific. dont think they did the sed rate.
im currently not on any meds, i was on amitriptyline, and have meberevine/colpermin etc..also have tried marshmallow roots etc. However now im just doing the low fodmap diet, ive quit smoking and im hardly drinking yet the symptoms arent subsiding.

 

[Vigguz]

Hello,

Let me try to give you a possible explanation.

Infections can "super-impose" such chronic situations anytime and since the structural integrity of your intestinal mucosa is compromised even without evidence of inflammation, such infections need time to clear up. You don't need to have any lab findings altered, as far as hints for inflammation are concerned.

Instantly after reading your symptoms I thought of a dangerous drop in serum levels of sodium and / or potassium. nausea and "sudden, inexplainable" shifts between diarrhea and constipation often mark electrolyte issues.

And yes, (un)fortunately, IBS can go to such extremes. It is possible that inflammation imposes, but if you have your findings don't wonder if they don't find any.

My humble opinion.

Wish you well,

Vigguz

 

[UnXmas]

Hello,

Let me try to give you a possible explanation.

Infections can "super-impose" such chronic situations anytime and since the structural integrity of your intestinal mucosa is compromised even without evidence of inflammation, such infections need time to clear up. You don't need to have any lab findings altered, as far as hints for inflammation are concerned.

Instantly after reading your symptoms I thought of a dangerous drop in serum levels of sodium and / or potassium. nausea and "sudden, inexplainable" shifts between diarrhea and constipation often mark electrolyte issues.

And yes, (un)fortunately, IBS can go to such extremes. It is possible that inflammation imposes, but if you have your findings don't wonder if they don't find any.

My humble opinion.

Wish you well,

Vigguz

I've not heard of IBS involving electrolyte problems, infection or inflammation. Why would her intestinal mucosa be compromised? If she had an infection, why would it not show in test results? And what do you mean by her "findings"? Sorry for all the questions but I really don't understand your post.

 

[Danico85]

Hi Megan

My advice is pretty simple

Get another colonoscopy and ask to see the results straight after. If it says you have Inflammation you have IBD (crohns or colitis) , If you dont then its probably IBS. From personal experience i have both IBD and IBS (lucky i know) and the IBS gives me the most pain and bloats me, constipates me and makes me feel horrific.

From what youve said i would bet you have IBS.

But im not a doctor so you need to keep at him/her and if you can try and get another colonoscopy.

Nicky

 

[kellehbeans]

Thanks for all your replied, i cant stop crying, its so depressing feeling unwell.
I awoke the other night from severe stomach pain but that was a one off, in general i can sleep through the night.
I feel that this is different from my long standing issues, i felt feverish but i never actually checked my temperature so im not too sure. Its been going on a month yesterday but feels so much longer and this is of course on top of my general stomach issued which rear their head constantly.
yes i had an upper endoscopy which dx the gastritis which they biopsied and said wasnt caused by h pylori but didnt offer any other reasons why i would have it.
my doctor is good at referrals but said that if this capsule endoscopy is clear then 'it is what it is'...i refuse to feel like this anymore.

Megan, have you ever taken NSAID's for a long period of time, or take them quite regularly? (e.g. ibuprofen or aspirin). That's the only other cause I can find for gastritis.. I've been looking myself recently for more information on this. You really need to press into what else could be causing this as indeed it can be caused by Crohn's.

 

[UnXmas]

Hi Megan

My advice is pretty simple

Get another colonoscopy and ask to see the results straight after. If it says you have Inflammation you have IBD (crohns or colitis) , If you dont then its probably IBS. From personal experience i have both IBD and IBS (lucky i know) and the IBS gives me the most pain and bloats me, constipates me and makes me feel horrific.

From what youve said i would bet you have IBS.

But im not a doctor so you need to keep at him/her and if you can try and get another colonoscopy.

Nicky

It's not that simple. Ruling out inflammation in the colon does not mean IBS. Inflammation in the colon does not necessarily mean Crohn's or UC.

I would also think it makes more sense to wait for the pill cam results before asking for another colonoscopy.

 

[Danico85]

UnXmas

I meant inflammation coupled with all her other symptoms. thats why i made sure to tell her that i wasnt a doctor, just my gut feeling (no pun intended) but she really needs to have another shot of a colonoscopy so they can take more biopsies. the pill cam cant do that.

 

[UnXmas]

You're right that the pill cam can't do biopsies, and that's a good point, though another colonoscopy still wouldn't rule out/diagnose Crohn's (or anything else) in the rest of the digestive system. But to me her symptoms sound very general - so many conditions can cause malaise, constipation and diarrhoea, I don't think it would be easy to diagnose that as IBS, even with another negative colonoscopy. I think it's better to be on the safe side and keep trying to find out if something's wrong than to assume IBS.

 

[Danico85]

Its easier to diagnose IBD than to rule it out. The biopsy taken from a colonoscopy can pretty much confirm IBD (not specifically if its Crohns or Colitis) but it can just about guarentee you a diagnosis.

I agree, it might be something completely different. i was just giving her my thoughts on it and made sure i told her i wasnt a doctor so my word is just my own feelings.

Definetly needs further assesment though.

 

[meganwilson1991]

Hi all,

On my colonoscopy report there was a small bit of inflammation, but they biopsied it and said it was just likely trauma from the scope. I think the doctors are sick of me and unlikely to allow me another colonoscopy...however because it was done a year ago and I have worsening symptoms who knows, worth a shot. But UnXmas I agree, best to wait for the results of the pillcam.
Kellehbeans-i don't really take much ibuprofen etc so unlikely to be that, I have heard smoking could be a cause so who knows, ive recently quit though. I have read on the crohns connection too.
There are so many similar symptoms of IBS and crohns and they seem to be the only 2 that fit my symptoms, and also my grandma has crohns im pretty sure. I think I just feel I have a few red flags that makes me feel it cant just be IBS.

 

[kellehbeans]

Hi all,
Kellehbeans-i don't really take much ibuprofen etc so unlikely to be that, I have heard smoking could be a cause so who knows, ive recently quit though. I have read on the crohns connection too.
There are so many similar symptoms of IBS and crohns and they seem to be the only 2 that fit my symptoms, and also my grandma has crohns im pretty sure. I think I just feel I have a few red flags that makes me feel it cant just be IBS.

I've heard smoking does too - I thought mine all started when I stopped smoking with my stomach problems - but turns out I had some stomach problems when I was with my ex-boyfriend (I asked him, because I cut out rice before and couldn't work out why) and while I was still smoking. I've stopped for 5 months now, and I've got a lot worse. There are some connections, like ex-smokers are more likely to develop UC, etc. Of course, it's not something on its own that would be a cause to UC/CD.
I got confused when I first started this forum too about the differences in IBD/IBS - there's a lot of information on these forums about the differences etc. I have red flag symptoms too, and am indeed undiagnosed too - but you just have to keep pushing. I haven't even got to the stages of colonoscopies and pill cams!

 

[meganwilson1991]

I've heard smoking does too - I thought mine all started when I stopped smoking with my stomach problems - but turns out I had some stomach problems when I was with my ex-boyfriend (I asked him, because I cut out rice before and couldn't work out why) and while I was still smoking. I've stopped for 5 months now, and I've got a lot worse. There are some connections, like ex-smokers are more likely to develop UC, etc. Of course, it's not something on its own that would be a cause to UC/CD.
I got confused when I first started this forum too about the differences in IBD/IBS - there's a lot of information on these forums about the differences etc. I have red flag symptoms too, and am indeed undiagnosed too - but you just have to keep pushing. I haven't even got to the stages of colonoscopies and pill cams!

My symptoms started to get worse whilst I was still smoking...10-15 a day. So I thought I would give up and see if it made a difference...I can definitely walk up stairs a little better (no pit stops) but stomach wise the difference is minimal. What are your symptoms then if you don't mind me asking?

 

[kellehbeans]

My symptoms started to get worse whilst I was still smoking...10-15 a day. So I thought I would give up and see if it made a difference...I can definitely walk up stairs a little better (no pit stops) but stomach wise the difference is minimal. What are your symptoms then if you don't mind me asking?

I smoked from 12, and I smoked for 10 years. I do have an e-cigarette now though, and I am tapering myself down. I feel better in terms of being able to exercise better without smoking.

Mine is just general pain, mainly left side, mainly upper, but does quite often travel downwards. Where the pain is located, if I press it, it is very sore and tender. My BM's are pretty bad - I would be classed more as constipated (despite going every day, sometimes 5 times with 'pebble stool') rather than anything else. More fibre or laxatives just knot my stomach up and make the pain worse. A new one is when I exercise, I get major pain. I have had blood, but not a lot. Most of my blood tests have come back normal. I also have bad reflux and suspected GERD. I get a lot of burning in my stomach too, but pain has taken up the majority of my day now and it's never relieved by BM's. I have A LOT of mucus, regardless if I strain or not. There are a lot others too, like night sweats etc. but too many to go into!

 

[meganwilson1991]

I smoked from 12, and I smoked for 10 years. I do have an e-cigarette now though, and I am tapering myself down. I feel better in terms of being able to exercise better without smoking.

Mine is just general pain, mainly left side, mainly upper, but does quite often travel downwards. Where the pain is located, if I press it, it is very sore and tender. My BM's are pretty bad - I would be classed more as constipated (despite going every day, sometimes 5 times with 'pebble stool') rather than anything else. More fibre or laxatives just knot my stomach up and make the pain worse. A new one is when I exercise, I get major pain. I have had blood, but not a lot. Most of my blood tests have come back normal. I also have bad reflux and suspected GERD. I get a lot of burning in my stomach too, but pain has taken up the majority of my day now and it's never relieved by BM's. I have A LOT of mucus, regardless if I strain or not. There are a lot others too, like night sweats etc. but too many to go into!

Ye I get stomach pain at least once a day, mostly, in fact almost always, upper stomach-burning etc. could be the gastritis. A fair bit of cramping too. I also get night sweats but I am generally quite warm blooded. I haven't ever had blood though, but I heard blood is common with constipation-perhaps hemorrhoids or fissures. I'm surprised you haven't already been offered a colonoscopy having experience blood etc.
For me one of the worst things is just how unpredictable it is, I just started a new job and there is only one toilet. Extra stress I don't need.

 

[kellehbeans]

Ye I get stomach pain at least once a day, mostly, in fact almost always, upper stomach-burning etc. could be the gastritis. A fair bit of cramping too. I also get night sweats but I am generally quite warm blooded. I haven't ever had blood though, but I heard blood is common with constipation-perhaps hemorrhoids or fissures. I'm surprised you haven't already been offered a colonoscopy having experience blood etc.
For me one of the worst things is just how unpredictable it is, I just started a new job and there is only one toilet. Extra stress I don't need.

My bleeding was definitely not from haemorrhoids or fissures. I know that because I had haemorrhoids a lot when I was a kid, as I was truly constipated. Now, I'm not constipated, it's the only way I could explain it (and most of my doctors, but I can go through bouts of 'constipated diaherra'), but I DO have a fissure, but that was bought on by a major cause of D, and I've now had it for a month and still trying to get rid of it as I do not want to go back to my GP, but I've made a promise that I will book an appointment on Friday if it hasn't cleared up any more. This fissure and the hemmy I did have, did not bleed one little bit, which is odd.

I empathise on the toilet one. The women here are so catty, and we have one downstairs just for the ladies, and it is locked by a key.

 

[meganwilson1991]

My bleeding was definitely not from haemorrhoids or fissures. I know that because I had haemorrhoids a lot when I was a kid, as I was truly constipated. Now, I'm not constipated, it's the only way I could explain it (and most of my doctors, but I can go through bouts of 'constipated diaherra'), but I DO have a fissure, but that was bought on by a major cause of D, and I've now had it for a month and still trying to get rid of it as I do not want to go back to my GP, but I've made a promise that I will book an appointment on Friday if it hasn't cleared up any more. This fissure and the hemmy I did have, did not bleed one little bit, which is odd.

I empathise on the toilet one. The women here are so catty, and we have one downstairs just for the ladies, and it is locked by a key.

Constipated diarrhoea...been there. Such a odd phenomenon. It's exhausted feeling unwell, but it is so nice to have people In similar positions here, I feel like I have a very good support network but in the same breath none of them experience what I go through so they can only help to an extent.
I think I just want an explanation, I reckon so much of people who aren't diagnosed symptoms stem from worry over what is wrong with them, mine certainly does

 

[kellehbeans]

Constipated diarrhoea...been there. Such a odd phenomenon. It's exhausted feeling unwell, but it is so nice to have people In similar positions here, I feel like I have a very good support network but in the same breath none of them experience what I go through so they can only help to an extent.
I think I just want an explanation, I reckon so much of people who aren't diagnosed symptoms stem from worry over what is wrong with them, mine certainly does

As somebody mentioned before, certainly join the undiagnosed support group - I've found a lot of support there myself and I post nearly daily on it - I always find something new to vent about and see what other people do in that situation! There's a few people that have also been diagnosed on there, and help out us undiagnosed folk because they've been there, done that and got the t-shirt several times over!

I think we all want an explanation. But until we have proper tests, we can't really dwell on it, otherwise we'll get stressed out and stress is bad, bad, BAD for us folk with GI problems. We just have to learn our own bodies and find out what is good and what is bad because we are all different!

 

[meganwilson1991]

As somebody mentioned before, certainly join the undiagnosed support group - I've found a lot of support there myself and I post nearly daily on it - I always find something new to vent about and see what other people do in that situation! There's a few people that have also been diagnosed on there, and help out us undiagnosed folk because they've been there, done that and got the t-shirt several times over!

I think we all want an explanation. But until we have proper tests, we can't really dwell on it, otherwise we'll get stressed out and stress is bad, bad, BAD for us folk with GI problems. We just have to learn our own bodies and find out what is good and what is bad because we are all different!

Yep, wise words!
Suppose we all have to just wait and see. I might browse that undiagnosed section, venting is therapeutic in itself