Non specific colitis... Need help!

[Javsy]

I got a complicated diverticulitis attack on May.... Resulted in a perforation and abcess. I got lucky apparently that the perforation sealed up itself... Otherwise apparently it would be an emergency surgery... .after a course of antibiotics... Everything seemed to be going good but then got an acute attack in July.

Was told I should get a colonscopy done as that is the gold standard and needed to see what's really going on inside the colon. At this point resection surgery is recommended due to 3 attacks in 5 months

Got another acute attack in September and then went for a colonoscopy in Nov. This is where all my confusion starts.

After the colonscopy I was told there was inflammation in all parts of the colon and to wait for the biopsy reports. Biopsy came in as non specific colitis, possibility of post infectious colitis. BUT the report also mentioned "local genesis".

Either way, the GI told me to get the calpro done and the value was above 1000...saod to wait out since I don't have any other symptoms and repeat calpro in 4 weeks.. I repeated and still calpro is above 1000 without any symptoms.

What's confusing me and causing sleepless nights and general stress is that the doctor says there is a probability it can be the start of crohns or UC.. But then there is a chance it's also just inflammation!

I thought crohns and UC can be detected right away via biopsy?

I've been put on anti inflammatory meds for now and told to repeat the calpro again after 30 days.

Went to get a second opinion and that doc says he highly doubts in crohns or UC because biopsy would have confirmed that... He believes the inflammation is still a cause of the diverticulitis... But what confuses me here is why is the inflammation in all parts of the colon where diverticula are not present even....

Anyways...any feedback would be appreciated... Someone who's maybe faced a similar scenerio... I really hope it's not the starting stage for crohns or UC I'm sure if it was, the histology report would have said indeterminate colitis (medical term used if they know it's crohns or UC but can't distinguish and tell u exactly which one it is).

[FRreedman]

I've never heard of this scenario before, and I've been involved with Crohn's disease for over 50 years. Have they not grown any cultures from the biopsies? I don't know where you are but please tell me are you on an island near never-never land or somewhere similar?

[Javsy in reply to FRreedman]

Thank you for replying. No one mentioned anything about growing any culture.

Whats more annoying is that to confirm diagnoses they will have to do another colonoscopy in 1 year and then get biopsy done then! Just to see how this non specific inflammation progresses.

Do you have crohns?

I am currently getting treated in Europe for my colon issues. Where are you located?

[FRreedman in reply to Javsy]

I am in Essex, but I go to West London, to a centre of Excellence for IBD/IBS conditions (St Mark's Hospital at Northwick Park). I suffer with Crohn's and have had it now, for 52 years since diagnosis at age 11. I have had numerous operations and resections, but, thankfully, I have never had an Ostomy. From what you are saying, I gather that it takes a minimum of 12 months for them to confirm a diagnosis of Crohn's in Europe. Wow, someone could die in less time than that, if they had a severe attack, and were left untreated.

[Javsy in reply to FRreedman]

The reason for the 1 year is because the biopsy right now isn't showing certain characteristics of either UC or Crohns. Hence they label it as non specific.

This term confuses me because the root cause of the inflammation is not known. I have read on multiple forums that if you have UC or Crohns, even in remission, it's clearly visible in the colonoscopy and the bipsoy. Even before a biopsy just by the images they see during a colonscopy they can 99.9% confirm that Crohns or UC is present.

In my case it's only visible as inflammation with no characteristics of IBD "yet". So I asked what is meant by "yet" and the reply I got was well if this is the initial start up of IBD it takes 6 months to 1 year to see how the cell structure develops and yes its a much accurate diagnosis then.

Now Im actually sitting in stress and anxiety on a daily basis thinking it could possibly be crohns, UC or just temporary inflammation BUT won't get a any confirmation for a while. It's the uncertainty that's getting to me.

[FRreedman in reply to Javsy]

I am at a total loss what to say. With IBD/IBS you should keep stress to a minimum, and here they have thrown you a complete curve ball. All I can say is my thoughts and prayers are with you, and we are here if you have any further questions or problems you want to discuss. Good luck

[Javsy in reply to FRreedman]

Thank you for the prayers and support.

Yes, trust me...this is a really annoying situation for me..

Side note: how do you deal with stress usually? My stress levels have been super high

[Vo321 in reply to Javsy]

Hi Javsy,

I'm sorry you're experiencing high stress levels at the moment. Given the circumstances, it's totally understandable. There are some ways to alleviate/lessen stress; including meditating, reading, yoga or even a walk to get some fresh air. I know it's easier said than done but try your best to eliminate any unnecessary stressors around you at this time. You could also try talking to a loved one or trusted friend about your concerns.

Wishing you all the best,

Vo321

[FRreedman in reply to Javsy]

I remember my Grandfather saying " There is no point in worrying! Ask yourself Can I change it? If the answer is Yes, then change it, nothing will happen and there is nothing to worry about. If, however the answer is no, then there is no point in worrying, 'cos it's going to happen anyway, so just try to plan for a way out if you can." Not easy to do, but something I have tried to follow all my life.

[dbar126]

Hi Javsy, Your situation sounds similar to mine. The past year has been nothing but on and off flare ups with what seemed liked constant diarrhea and weight loss because everything that "went in, came out". Lab work was done routinely and showed high levels of calpro, colonscopy was done as well as endoscopy for nausea and vomiting. Several hospitalizatons occurred throughout the year for weakness and electrolyte replacement therapy. I have just gotten home from hospital last night (again) only this time it was discovered I had tested positive for C-diff!! I had not been tested or treated forit in the past and to my (as well as hospital staff) I was positive for it! I spent the last 12 days in the hospital being treated and on isolation but feel much better now! Just thought I would pass this along as it may not hurt to be tested yourself Much luck and healthy wishes to you!

[Javsy in reply to dbar126]

Hi Dbar. Thank you for the reply.

Just curious; did you show any IBD in your colonoscopy? Also was there inflammation present without any know reason?

In my case there is inflammation minus fever, diarrhea and etc and hence the doctor hasn't done a c diff test.

Funny you mention c diff because I specifically requested for that recently after 3 courses of antibiotics in 5 months. I feel I have prevailing bad bacteria in my system and hence C diff maybe the cause for me but the doctor has said they didn't test for it yet because I'm not showing any typical symptoms.

Right now I'm on Pentasa which is an anti inflammatory. My next calpro test I will request to be tested for c diff aswell.

So have they nailed it down for you to cdiff being the cause of your overall condition all this time?

The term Non Specific Colitis is really annoying!!!! Such a broad term

[dbar126 in reply to Javsy]

I had been having diarrhea but no fever or the infamous c-diff smell. My stool had actually not been as watery when I went to hospital. They tested for c-diff only as a fluke but even after sample collected everyone was saying "no way she has c-diff" Surprise!! I am also on pentasa which has controlled my chrons. I hope you find your answers

[Javsy in reply to dbar126]

Thank you. I don't have crohns or UC "yet". But still on Pentasa to work as an anti inflammatory... Soooo annoying.

I'll def take your advice and get a c diff checked... I suspect it maybe that... 3 courses of heavy antibiotics would do it I think.

Yes I also don't have diarrhea but it's a weird texture... Mushy/pasty that breaks up and becomes muddy 30 seconds after it comes into contact with the water of the bowl.

Will keep you posted and thank you for replying to this thread.

[dbar126 in reply to Javsy]

Not to sound gross, but thats exactly what mine was like "sludgy".

[Javsy in reply to dbar126]

Nope... Not gross at all if it's going to help someone out... Thank you!!

I'll def ask them to do a c diff test next

[Krn210]

May I ask what was ever found, if anything? I am in a similar situation and am anxious as to what keeps causing the diverticulitis flares.