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No Diagnosis

I have had on and off gut issues for years, in last 2 years things have been way worse after a bout of food poisoning. I am 62 year old male.

Diagnosed with Ibs and pelvic floor issues about 1 year ago, tried laxatives did not work, tried pelvic floor therapy did not help, tried hypnosis/CBT that helped me deal with symptoms but symptoms unchanged, they suspected sibo tried rifaximin, did not help, been to 3 gastro Docs.

Symptoms:
Loose stools
Sometimes diarrhea
Takes a half hour in one sitting to go
3 to 4 visits to the bathroom mostly in am
Bloating in signmoid colon after eating
No distension
Sometime mucus only
Feel like I have to go but sometimes it's just flatulence from the bloating
Symptoms worse after eating or drinking anything
Felt problem was in sigmoid colon all along


Tests:
Ct scan with IV contrast dye and oral contrast Jan 2023, found nothing no inflammation
Colonoscopy/Endoscope in March 2023 they said everything normal except diverticula found, which was found on 2 past colonoscopies as well.
September 2023 repeat ct scan IV contrast dye and oral contrast found no inflammation
Calprotectin test attached but 5 out of 6 were abnormal, one was normal. I attached PDF
Blood tests normal including ESR and C Reactive all in range, all vitamins in range except Vitamin D around 23

CT Scan May 2024 was ordered due to recent pain and small amount of blood/mucus coming out no stools, just defecating mucus for 2 days, some stools in am, no fever, no specific sharp pains, mostly cramping and gas pains.

This CT scan found inflammation in sigmoid colon consistent with Diverticulitis. I asked GI if they know for sure that inflammation is caused by Diverticulitis and they said the only can assume it's that, but they don't know for sure. Only another colonoscopy would be able to tell. I had my Doctor call the radiologist and they said they saw no inflammation in small intestine or ilium.

From report:
GI tract: There is no bowel obstruction. The appendix is normal. There is mild wall thickening in pericolonic fat stranding surrounding the distal sigmoid colon consistent with mild acute sigmoid diverticulitis. No pericolonic collection.


I am probably going to do another Colonoscopy, to check for healing and IBD.

What does this community think of this situation and diagnosis?
and is there anything else I could be doing to find out what's wrong with me?


They don't think it's colitis as not a lot of Diarrhea, the also skeptical of Crohn's as its usually starts small intestine, all my symptoms suggest that whatever this is it's affecting mostly my sigmoid colon, as most of my symptoms suggest that's the case.

I am skeptical of the diagnosis of Diverticulitis as I had no fever, no chills, no signs of infection, no sever pain in one spot, all I had was gastro symptoms that could be anything. Bottomline CT showed inflammation this time whereas others did not, and my stool calprotectin has been raised the last year and half, with only one normal result.

Appreciate thoughts?
 

Attachments

my little penguin

Moderator
Staff member
If your scopes /imaging and blood work all point to Diverticulitis
Why the concern for crohns ?
Fecal cal being elevated just means inflammation is present either from infection or something else like diverticulitis.

based on the info you provided
Talk to your Gi but it sounds like they are investigating and found the cause for you
 
My fecal calprotectin has been elevated for year and half. It was never tested after the diverticulitis; all the tests were before this.
I could not have an infection for a year? or diverticulitis for a year?

Why was it elevated this long before the acute case of diverticulitis last week?
 

my little penguin

Moderator
Staff member
Lots a reasons beside crohns can cause high fecal cal
I can’t get you file to open
So I don’t know how high is high

take any nsaid ?
There is diverticulosis and diverticulitis
How the fecal cal is stored by the facility and by yourself
Time of day can change values
Fecal cal is just one tool to suggest further investigation is needed
Your further investigations completed suggest that it is not crohns
But diverticulitis
Each lab has different values for normal
Crohns is in the 1000’s when flaring
Above 50 is abnormal but borderline until 160 on most
Hope that helps
Scopes /biopsy /imaging would show crohns if it was there
Regardless of fecal caloprotectin
 
Thanks for your responses.

I don't take nsaid at all, had taken ppi but came off for last test and still ended up high May 16 at 164 before the diverticlulitis.

I know diverticulosis and diverticulitis difference, I never had diverticulitis before that I know of, I have had diverticlulosis since my first scope 2013.

Could diverticulosis cause gi symptoms, by doc thinks it does not but some sources say it can. As you can get more of these pockets as you age, and might cause symptoms.

I agree probably not Crohn's but inflammation was present, and both my gp and gastro guy said they can distinguish inflammation source on a CT scan, diverticulitis might be unrelated to other gastro issues, or it might be something else and not diverticulitis
Both Doctors and radiologist said it suggested diverticulitis but it's not 100 percent DX. I guess time will tell and perhaps one more scope.

here are the fecal cal numbers

May 16 2024 Calprotectin 164 ( range normal less than 50ug/g)

march 21 2024 calprotecti n 123 ( range normal less than 50ug/g)

December 12 2023

Lactoferrin 36.3 ( range normal less than 7.24ug/ml)

Calprotectin 165.7

past study results are below

Oct 22 2023 (had aninfection on this one)

Lactoferrin 24.9 ( range normal less than 7.24ug/ml)

Calprotectin 185.7 ( range normal less than 50ug/g)

May 15 2023

Lactoferrin 2.1 ( range normal less than 7.24ug/ml)

Calprotectin 38.8 ( range normal less than 50ug/g)

Jan 3 2023 GI Map, less confident in gi map testing

Calprotectin 297 ( range normal less than 173ug/g)
 
Alhutch,
I'm not a doctor, nor do I play one on TV. (your age suggest you can remember those commercials!) A lot of what you describe sounds like "food-borne" issues I've developed as I've gotten older. (I'm 56 | Crohn's DX at 15 | 2 small bowel resections most recent this past November | on Stelara for maintenance). I only say this AFTER all your tests DON'T point to Crohn's. I have found that paying much closer attention to my diet has helped alleviate a lot of what you describe. For instance: the bloating and gas you describe I suffered with for YEARS until a neighbour retuned home from a visit to Paris and said her similar issues went away the minute she started eating only fruits and yoghurt for breakfast. I did the same and it made a world of difference. I now know breads and milk are not good for me. I still eat bread but I try to stick with home-made breads and I do it KNOWING it might cause me issues.

Start tracking your food intake more closely. It's just a suggestion but many people on this board have found their "trigger" foods and know how to eat what's best for their bodies now.

C
 

my little penguin

Moderator
Staff member
Those numbers are not high

Barely above normal and definitely not crohns inflamed high

.
 
Alhutch,
I'm not a doctor, nor do I play one on TV. (your age suggest you can remember those commercials!) A lot of what you describe sounds like "food-borne" issues I've developed as I've gotten older. (I'm 56 | Crohn's DX at 15 | 2 small bowel resections most recent this past November | on Stelara for maintenance). I only say this AFTER all your tests DON'T point to Crohn's. I have found that paying much closer attention to my diet has helped alleviate a lot of what you describe. For instance: the bloating and gas you describe I suffered with for YEARS until a neighbour retuned home from a visit to Paris and said her similar issues went away the minute she started eating only fruits and yoghurt for breakfast. I did the same and it made a world of difference. I now know breads and milk are not good for me. I still eat bread but I try to stick with home-made breads and I do it KNOWING it might cause me issues.

Start tracking your food intake more closely. It's just a suggestion but many people on this board have found their "trigger" foods and know how to eat what's best for their bodies now.

C
unfortunately, I remember that commercial well, I have been thinking of getting to a dietician, perhaps your right but it still shows higher than normal fecal calprotectin. My doctor still seems concerned about the elevation without an explanation for the last test result.
 
1. did they look at your terminal ileum in your colonoscopy? for me colonoscopy was normal in colon but not in the terminal ileum, and biopsies there indicated mild chronic active inflammation
2. CT scan with contrast hasn't really shown much for me although I am mild Crohn's they say - MRE did see inflammation (special type of MRI)
3. those calpro numbers are not that bad to be honest - for me it was 400+ before I started strict diet etc. and I could never get it below 100 since without medication

dont know much about diverticulitis but based on what you wrote to me that sounds like the most reasonable explanation

Crohn's is not really possible to be distinguished based on symptoms but I dont think constipation is common unless there is a stricture which they would have seen by now

if you do not believe it I would consider 1) and 2) for further tests for peace of mind and potentially asking for a second opinion
 
1. did they look at your terminal ileum in your colonoscopy? for me colonoscopy was normal in colon but not in the terminal ileum, and biopsies there indicated mild chronic active inflammation
2. CT scan with contrast hasn't really shown much for me although I am mild Crohn's they say - MRE did see inflammation (special type of MRI)
3. those calpro numbers are not that bad to be honest - for me it was 400+ before I started strict diet etc. and I could never get it below 100 since without medication

dont know much about diverticulitis but based on what you wrote to me that sounds like the most reasonable explanation

Crohn's is not really possible to be distinguished based on symptoms but I dont think constipation is common unless there is a stricture which they would have seen by now

if you do not believe it I would consider 1) and 2) for further tests for peace of mind and potentially asking for a second opinion
Here is report but it looks like they did not take biopsies of terminal ileum, he just inspected it with the scope

on march 13 2023 over a year ago I had these findings

Findings Digital rectal exam and perianal exam were normal. Normal hemorrhoid tissue was seen on retroflexion in the rectum. Mild erythematous mucosa in the distal rectum; performed 4 cold forceps biopsies to rule out colitis Three 4 mm sessile Paris Is polyps in the ascending colon; completely removed en bloc by cold snare and retrieved specimen Few diverticula in the sigmoid colon No other significant abnormalities were identified in a careful examination of the colon. Care was taken to wash and suction any remaining residue off all mucosal surfaces in order to completely visualize the mucosa, and care was taken to slowly withdraw the scope while carefully inspecting all mucosal surfaces including the proximal and distal sides of all folds. The right colon was inspected twice on forward view. The terminal ileum was normal.

pathology report



Final Diagnosis
A. Stomach, biopsy:
    • Gastric antral- and body-type mucosa with mild chronic gastritis and changes suggestive of proton pump inhibitor usage.
    • Immunohistochemical stain for Helicobacter has been ordered and will be reported in an addendum.

B. Colon, random, biopsy:
    • Colonic mucosa with no significant pathologic change.

C. Ascending colon polyps x 3, polypectomy:
    • Fragments of tubular adenoma; see Comment.
    • Fragment of sessile serrated polyp.

D. Rectum, biopsy:
    • Rectal mucosa with prominent lymphoid aggregates.

COMMENT:
C) With regards to the ascending colon polyps (part C), MLH1 is intact in areas of low-grade dysplasia, supporting the diagnosis.
 
1. did they look at your terminal ileum in your colonoscopy? for me colonoscopy was normal in colon but not in the terminal ileum, and biopsies there indicated mild chronic active inflammation
2. CT scan with contrast hasn't really shown much for me although I am mild Crohn's they say - MRE did see inflammation (special type of MRI)
3. those calpro numbers are not that bad to be honest - for me it was 400+ before I started strict diet etc. and I could never get it below 100 since without medication

dont know much about diverticulitis but based on what you wrote to me that sounds like the most reasonable explanation

Crohn's is not really possible to be distinguished based on symptoms but I dont think constipation is common unless there is a stricture which they would have seen by now

if you do not believe it I would consider 1) and 2) for further tests for peace of mind and potentially asking for a second opinion
FYI, the CT I did is the same enterorrhaphy, as it uses both IV and Oral contrast, so same as MRE but faster. They said that my small intestine looked fine.

My question can you get crohns in sigmoid colon?
 
The don't have a problem with diverticulitis dx, but the problem I have is I could not have had diverticulitis for 1.5 years of all these symptoms to be explained on that alone, and high calpro tests, so I either have 2 problems but I definitely don't have one problem diverticulitis as that's an acute dx only last 2 weeks not 2 years.
 
What treatment did you receive for your diverticulitis diagnosis and how did it go?

BTW I would find it really really hard to believe that multiple GI-s would confuse diverticula with Crohn's, they look totally different on the scope.
 

my little penguin

Moderator
Staff member
Unfortunately you could have a lot of things
But given your clean scopes unlikely crohns
Definitely do another set of scopes and MRE (less radiation better images than CTE )
Unfortunately ibs can cause similar symptoms to crohns but without signs of damage
Slightly above normal fecal cal ….
Means minor inflammation
Easy to monitor to see if it starts getting high (300-400 )
Did they do stool tests for parasites etc….?
Did you freeze the stool or refrigerate prior to dropping it off ?
First stool in the morning ?
Use the same lab or different labs ?
 
What treatment did you receive for your diverticulitis diagnosis and how did it go?

BTW I would find it really really hard to believe that multiple GI-s would confuse diverticula with Crohn's, they look totally different on the scope.
I never said the GI's confused this with scope as my scope is over a year ago, I said the GI said that they can't distinguish inflammation on a CT scan but by location they assumed Diverticulitis. They can only do with scope.

My treatment is antibiotics, I feel fine just sore lower left with the inflammation, no complications, never really had lots of bad pain so originally, they thought it was not diverticulitis but something else, ct scan suggested this diagnosis. I might of in past had diverticulitis attacks like this and they just assumed it was IBS but it could have been chronic diverticulitis which might have been why calprotectin slightly elevated.
 
Unfortunately you could have a lot of things
But given your clean scopes unlikely crohns
Definitely do another set of scopes and MRE (less radiation better images than CTE )
Unfortunately ibs can cause similar symptoms to crohns but without signs of damage
Slightly above normal fecal cal ….
Means minor inflammation
Easy to monitor to see if it starts getting high (300-400 )
Did they do stool tests for parasites etc….?
Did you freeze the stool or refrigerate prior to dropping it off ?
First stool in the morning ?
Use the same lab or different labs ?
Thanks, see post above.

I only had one scope over a year ago, things can change.

I am probably doing another scope.

I have done over 7 stool tests for parasites etc, nothing ever comes back except elevated calprotectin

First stools in am.

We use GI map for one, Genesis for about 4 and labcorp for last few.

First stool in am. Genesis sent ice pack, and labcorop took frozen, gi map we don't use anymore as they have no protocol.

Your probably right diverticulitis but it might be chronic that's why all the symptoms coming and going. Not IBS.
 
Unfortunately you could have a lot of things
But given your clean scopes unlikely crohns
Definitely do another set of scopes and MRE (less radiation better images than CTE )
Unfortunately ibs can cause similar symptoms to crohns but without signs of damage
Slightly above normal fecal cal ….
Means minor inflammation
Easy to monitor to see if it starts getting high (300-400 )
Did they do stool tests for parasites etc….?
Did you freeze the stool or refrigerate prior to dropping it off ?
First stool in the morning ?
Use the same lab or different labs ?
FYI on the scans
Using CT and MR Enterography to Diagnose and Monitor IBD - PMC (nih.gov)
 

my little penguin

Moderator
Staff member
Freezing raises fecal caloprotectin
But if it’s not refrigerated then the sample is useless
Been at this 13 years
8-9 scopes for my kiddo
Multiple MRE and CTE (allergic /anaphylaxis to both)
Sometimes you can have more than one thing going on which muddies the waters
My kiddo -crohns juvenile arthritis and rare auto inflammatory disorder (sweets syndrome )
So while it’s important to look for answers
Sometimes other systems give you clues
In his case the skin lesions we thought were bad hives actually connected the dots of his other symptoms we thought were uncontrolled crohns but turned out was sweets
 
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