Have any of you had 'minor abnormalities' found in tests? IBS?

[Borg]

Just wondering how common an experience this is, and even better, possible implications.

I had a clear by-eye colonoscopy, "subtle changes" in the colonoscopy biopsies, and a patch of "minor abnormalities" in terminal ileum for the small bowel MRI.

I have been dismissed as IBS.
Consultant did say however that it's possible that it was a Crohn's flare, but only the last remnants seen in the tests.

Is it possible for IBS to cause minor inflammation?
Have any of you been in this situation, or heard of anyone who has (and what happened in terms of subsequent flares or diagnoses)?

[For the record - negative blood tests, positive calprotectin at 398, and severe debilitating diarrhoea up to 10 BMs a day typically within an hour of eating - had minor issues a long time but this is first ever major event of symptoms]

 

[gotumtum]

Hey Borg - Have you had a capsule endoscopy?

 

[Borg]

Hey Borg - Have you had a capsule endoscopy?

No, I haven't. I've had a colonoscopy and small bowel MRI.

 

[gotumtum]

Hmmm - I wonder if you could have one?

The fact that there were changes in your terminal ileum, and the D about an hour after eating might suggest that there are problems in the small intestine, and that the small intestine MRI may have missed. Though this is a small chance - I think that there have been recent studies to show that Capsule endoscopy has a slightly higher rate of diagnosis than MRI?

I am in a similar boat as you - no MRI yet, but booked in for a capsule endoscopy as my colonoscopy has shown nothing visually or by biopsy (+bms 20+ per day and vomiting)

It may be worth asking for one or for a second opinion. - Good luck - I completely understand where you are coming from!

 

[Borg]

Hmmm - I wonder if you could have one?

The fact that there were changes in your terminal ileum, and the D about an hour after eating might suggest that there are problems in the small intestine, and that the small intestine MRI may have missed. Though this is a small chance - I think that there have been recent studies to show that Capsule endoscopy has a slightly higher rate of diagnosis than MRI?

I am in a similar boat as you - no MRI yet, but booked in for a capsule endoscopy as my colonoscopy has shown nothing visually or by biopsy (+bms 20+ per day and vomiting)

It may be worth asking for one or for a second opinion. - Good luck - I completely understand where you are coming from!

Something has to either be a false positive or a false negative, as calprotectin was up and MRI had inflammation that wasn't enough to be diagnosed. To my knowledge, they both have only a small chance of being wrong, but one of them has to be!
I would suspect it was the MRI, as it may be that inflammation decreased over time and there was only minor inflammation left by that point.

Sounds like you're having a worse possible-flare than I did - I was normally at 2-8 per day, though occasionally 10+, and no vomiting. I hope your capsule endoscopy goes well. 20+ BMs a day is not something you want to have untreated for much longer!

I think next time this happens (I assume it wasn't a one-off) I'll push for a capsule endoscopy, and so hopefully avoid the delays of doing each test in series... Symptoms started in March, and I had the MRI in August - I still had symptoms then, but not as bad.

 

[gotumtum]

Sounds like a plan. - How long has this 'flare' lasted for you? and do you think that there was anything in particular that stopped it?


Yeah, keen to get it sorted. Don't know if I should be "hoping' for a diagnosis 15 months in or not - an IBS diagnosis would be bad - thankfully we accidentally found that Doxycycline helps for some reason?! - Had to go on it for something else, and it sorted the tummy troubles, though once i stop it it comes back at day 10 every time - Weird huh!

 

[Borg]

Started March, peaked late April to early July, gradually going down after that. Now it's almost gone (~1 BM a day, but loose stool not always digesting things properly). I'd put the time scale on it as being a 6-month 'flare', but maybe less than half that when it was actually bad bad.

I switched around eating habits, did exclusion diets, etc. etc. As far as I can tell, nothing caused it to begin or to end, it just did. The only thing I have found to be at all effective is to not eat when going out. I practically starved myself early July to get some work done (uni lab 7 days a week) - I barely ate for a few weeks. It's possible that this could have been a factor in stopping things?

It's good you've found something that helps at least - 15 months in is really quite a long time to have been suffering the symptoms.
I'd say hoping for a diagnosis is sensible. Even if it's not a nice diagnosis, a diagnosis means that action can be taken against it!

My diagnosis according to the letter I just received is 'diarrhoea'. By the way, loperamide isn't particularly effective for me, so that's great :duh: If you've been going at this 15 months with 20+ BMs a day, don't let them fob you off with IBS. If I was still bad bad, I would be stamping my feet (foot-stomping is postponed until next time).

 

[javanov]

This is pretty much exactly what I have at the moment

 

[StarGirrrrl]

If Loperamide doesn't work well there is another drug called Lomotil which is as I understand it a more charged version of the former.

 

[Imageek]

I'm in a somewhat similar situation. So far undiagnosed, problems started in March with a lot of abdominal pain and irregular bowel movements. Ended up in the ER once due to dehydration. I've had a lot of tests that have been mostly normal. They did find mild active ilietitus in my terminal ilieum and a hiatal hernia. Ilietitus is basically just inflammation. My GI said it was "No big deal".

I had a prometheus IBD blood test which basically said some levels were high but it did not find IBD. It did find that I have all 4 of IDB genetic markers they tested for.

So far my current GI says I might have IBS. After about 10 tests he has not diagnosed me with anything yet. I have a follow up with him on Tuesday. I also scheduled with another GI to get a second opinion because something is definitely wrong and I am not sure the current GI is actually trying very hard to find it.

i've read that an average Crohn's diagnosis is 8 months. So you may be in for a long wait. It can be tough waiting when you are in pain and having a rough time.

 

[malissaamillia]

They have found some minor abnormalities as well in the past years, but the other way around. Blood tests showed inflammation, but clean colonoscopy and just mild gastritis. Bone scan showed post-arthritis abnormalities and something that could be sacroiliitis. Right now they are mainly saying that they can see that something is wrong, but just don't have a clue what... At least I get physical therapy for the joint pain since my dentist found out that I've got problems with my jaw as well.

 

[ezgoindude]

Thank you Thank you Borg for starting this thread, the poor folks at the celiac forum have been listening to my rants for months with no relation, ha.

I've had colonoscopy, endoscopy, dozens of blood tests, CT scan with barium, and stool calprotectin.

They've been saying IBS for years until my calprotectin hit 153 when I felt absolutely terrible, since then symptoms have slowly vanished except for these floating smelly stools, weight issues, etc.

Colonoscopy biopsy caught "patchy minimal elevation of eosinophils in cecum of colon". Doc says if it is an eosinophilic colitis/EGID kind of issue, its one of the mildest ones in his medical experience, and may be entirely controlled by just my diet...... UGH.

Any updates from the rest of yall? I have to try and apply for obamacare before the rounds of testing can continue

It has also been 15 months since symptoms had elevated.

 

[LodgeLady]

Yes I have similar tests. My ESR is elevated ( just over high end of normal). My anemia fluctuates from low end of normal to just below normal. I had " mild ileitis" on colonoscopy. CRP was up early in the diagnosis. All other testing so far is normal ( SBFT, upper and lower GI) and repeat colonoscopy was normal ( after mega doses of prednisone). I still struggle with abdominal pain and nausea, despite a low fiber diet. Have trigger foods that give me all day "d" but my diet and antacids are contributing to my "C".

My GI is treating me for mild Crohns but I think he's still not convinced. Only thing left is a pill cam which I don't know if he will order.

For so called mild symptoms I have felt majorly sick at times. I wonder what is remission?