IBS, Crohns, colitis, sarcoidosis?

Posted by camprunamuck @camprunamuck, Jul 30, 2023

Have had bowel issues for years. First it was bouts of diarrhea every time I ate. Doctor said probably IBS but the meds were worse than the condition. Later, the constant diarrhea went away and became stomach cramps w/first meal of the day and several bowel movements. Had a colonoscopy/endo which showed gastritis & diverticulosis. After that had a bout of diverticulitis.

Past couple years had random bouts of diarrhea, or just pain. Then got to bowel changes w/urgency, or the bowel acted like it didn't know what to do. Had another colonoscopy/upper gi endo. Doctor never got back to me, w/diagnosis in 2 months, but pathology report said: focal active colitis, focal neutrophilic cryptitis, crypt architectural disarray, mild increase in lymphoplasmacytic cells, & few mucosal granulomas in colon, as well as granuloma in the stomach. Findings suggest: possible Crohn's, less likely sarcoidosis.

Today I got a letter from doctor saying there are no abnormalities that require changing current management. (Not doing anything or taking anything so I'm not sure what that means). Biopsies showed no significant inflammation, but both biopsies show granulomas, that could be related to history of sarcoidosis.

So, all that to say, how do I know what the actual problem is? I do have sarcoidosis diagnosed through a mediastinoscopy. Is that the cause of all the bowel and stomach issues? Is focal active colitis nothing a condition or just a symptom of something else?

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As a place to start, can you follow up with your doctor and ask for a more detailed explanation of the results? Or would you want to get a second opinion?

From what you mentioned, it sounds like the letter they sent is contradictory to the pathology report.

If the colonoscopy and endoscopy really do show nothing significant, then you could talk to them about options for managing your symptoms. Now, I know from experience that conversation might not yield much, but I feel it would be ideal to rule out the other things before moving on to figuring out other ways that might give you more relief.

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@emo

As a place to start, can you follow up with your doctor and ask for a more detailed explanation of the results? Or would you want to get a second opinion?

From what you mentioned, it sounds like the letter they sent is contradictory to the pathology report.

If the colonoscopy and endoscopy really do show nothing significant, then you could talk to them about options for managing your symptoms. Now, I know from experience that conversation might not yield much, but I feel it would be ideal to rule out the other things before moving on to figuring out other ways that might give you more relief.

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Yeah, I'm working on getting a second opinion. This doctor hasn't been too helpful.

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