Not Crohn's, not infection....then what is it?

[rowk]

Hi all! So glad to have found this place. Will try to make this short and sweet but am looking to see anyone has any advice or knowledge to help me out.

August
-Experienced left flank side pain (no other symptoms) - thought I had a kidney stone as I've had them in the past
-had a CT scan and no stones, but 26cm of inflammation diagnosed for my small intestines
-typically blood tests come back all normal
-was put on ten days of antibiotics, felt a little better

September/October
-still having side pain on left side (yes, left side but both Urgency Room doctor and GI say stomach pain doesn't translate to the brain to the exactly spot of the issue)
-go to GI and they recommend colonoscopy to determine issue
-Colonoscopy doesn't show much. Couldn't get into my small intestine because of the inflammation but took samples as best they could. Samples showed no abnormalities or signs of Crohn's
-MRI scan suggested to see if still inflamed. MRI results show only 6cm of inflammation now (drastic decrease).
-Doctor doesn't believe it's Crohn's because inflammation wouldn't have decreased on it's own without treatment for Crohn's (please chime in if i you know anything about this). BUT doesn't believe it's an infection because the antibiotics would have treated it and the body would have fought it by now.
-Doctor says see if pain goes away medication free or start on "mild" Crohn's medication, even though he doesn't believe it's Crohns (see above) and because my only symptom is flank pain (and back pain). I opt to try try no meds for a month and give him a call in a month to check in.

November
-Still left flank and back pain - some days better than others. Occasional upset stomach but no "D" really. I've never had BM issues -- I'm a very regular person
-supposed to call doctor back in a week to advise how I'm doing
-heat kind helps me but I'm not sure if that's because it distracts my brain from the pain (if that makes any sense...). Pain isn't horrible but now just an annoyance after 2 months...ugh. Similar to a side ache from running or cramps.

I'm stuck. No idea what to do other than a second opinion. The doctor felt bad he didn't have a true Dx for me. I don't want to start meds because I know they can have many side affects, but if it's what I need to do I'll do it. I'm just really stuck on the fact the inflammation went down so much w/o treatment, yet the pain hasn't gone away.

Any help/advise/thoughts are appreciated. Thanks so much!

 

[Trysha]

Hello
Welcome to the forum.
Sometimes Crohn's. Can be an elusive diagnosis to make
If the inflammation has been seen in your small intestine
it is surprising that your GI did not order further investigations such as MRI
Enterography., and capsule enterography
Have you had the usual blood work such as CBC, ESR,CRP etc also fecal calprotectin
Just a few thoughts
Maybe another GI opinion?
Feel better soon
Hugs and best wishes
Trysha

 

[gotumtum]

Hey rowk

Not sure if you are female...if so have they ruled out endometriosis, urinary tract infection, ovary issues etc?

Or if Male - Prostate issues?

Or either - Kidneys?

Also: which antibiotics were you on? - Some can help IBD. Have you had stool tests for Giadia etc?

Also - I understand that some people have their appendix in the wrong place...?

Good luck with your journey

 

[SarahD]

I would recommend asking for a fecal calprotectin test as the next port of call. This tests your stool for inflammation coming from the digestive tract. If it's negative they often diagnose IBS, but if the result is positive then further investigations are needed. A positive result may indicate IBD or another source of inflammation of the digestive tract.

The mild IBD drugs are called 5ASA's. If you find that your pain improves on them then that's helpful in making a diagnosis, however if your problems don't improve on them then it doesn't rule out IBD. Many IBD'ers don't respond to 5ASA drugs. I can't imagine your dr would try stronger drugs without a positive diagnosis.

 

[maggiesfour]

Hey rowk,

So sorry you are not feeling well. Your MRI showed such a dramatic DECREASE in your inflammation, that it could quite possibly be, just one of those things. A 20cm decrease in less than a month, is pretty impressive. Sounds like your body knows what to do.

No fever? Sweats?

Why don't you try and increase your water intake - give it another couple of months and see what is what.

Best of luck and keep us in the loop!

 

[baistuff]

From what you report it is impossible to make heads or tails about anything.

1) if your CT scan was originally to rule out a kidney stone, then 99% chance it was done without contrast. A non-contrast CT for evaluation of he bowel is really pretty meaningless. A CT with at least oral if not IV contrast would be helpful, but even then it wouldn't really show inflammation. More likely "bowel thickening" which can mean anything from infection, inflammation, ischemia, to red herring to basically anything else. an MRE would be helpful, but even that is not completely diagnostic.

2) Colonoscopy can reach into the end of the terminal ileum. Inflammation is not a reason to pass a scope. Narrowing, stricture, masses, certainly can, but if you had enough inflammation to prevent the passing of the scope, they would have biopsied the area and you would have a diagnosis. I'm guessing the scope went as far as it could. Did they take any biopsies? that would be helpful.

3) Bloodwork is NOT diagnostic for IBD but can be helpful. Besides basic inflammatory markers and routine CBC, BMP etc... an ASCA or ANCA may be helpful. Not diagnostic either way, but could be helpful

3) Stool studies would be very helpful. - check for blood, white cells, culture for infection, fecal cal.

Once that is completed it can direct how to proceed (capsule endoscopy, EUS, repeat scope.)

IMH medical opinion your current workup has only muddied the waters, and any conclustion is quite premature.

Good luck.

 

[Rara09]

Hi rowk, sorry to hear I'd your troubles.

I just wondered if you had resolved the situation at all. You pains on the left sound very similar to mine;strange pain user left rib, which is sometimes worse than other, goes around my back etc, it is mostly uncomfortable.

Recently I have been experiencing D, blood, mucus and lethargy; but I am still undiagnosed. Gp examination and bloods came back normal, but calprotectin test came back as showing inflammation. Currently awaiting gastro appointment which should be within two weeks.

Very frustrating and frightening. Please let me know how you get on and know you are not alone.

Many thanks

 

[rowk]

Thanks all for your feedback.

Still in the same boat for the most part. The pain is still present - more so the last few days (thinking stress has aggrevated it). No new symptoms though. Two weeks ago today they put me on levbid (an antispasmodic) which hasn't done a darn thing thus far. Gonna give it another week and call back like they suggested.

In response to some of the things mentioned above:
- the initial ct scan was with an IV contrast.
- dr doesn't see a benefit in a stool sample - He explained why and it made sense, just don't ask me to explain it lol
-i haven't had any further tests then mentioned above

The only thing that eases the pain is a heating pad and possibly a pattern with eating lighter meals (fish, shakes, soups).

Rara sorry to hear you're experiencing the same but glad I'm not alone. Let me know what you find out.