Please help with biopsy results

[KatyBuckeye]

Earlier this week, I was given a diagnosis of Crohn's. This was following about 5 weeks of mild diarrhea that was unresolved with over-the-counter immodium. Initially, I was having the diarrhea (sometimes more loose stool than diarrhea) about 3-4 times per day. After the colonoscopy, I felt as though my symptoms were almost resolving and I was only having one loose stool per day. The GI doctor took 7 biopsies during the colonoscopy. Per the GI doc, they are about "90%" sure that it is Crohn's. I have a follow-up next week for a CT scan. They already started me on Lialda. I have a copy of the biopsy results, but I am still confused when I read it:

1. Biopsy of terminal ileum: Benign mucosa, significant change is not seen.
2, 3, 4, 5, 6. Biopsies of ascending, transverse, descending sigmoid colon and rectum: Benign mucosa with mild, acute colitis- cryptitis noted. No other changes seen.
7. Biopsy of rectosigmoid polyp: Portions of inflamed granulation tissue noted, no mucosa noted.

Comment: Minimal active colitis with inflamed granulation tissue suggest the possibility of inflammatory bowel disease- Crohn's. Clinical correlation suggested.

After getting the diagnosis, I was EXTREMELY upset and stressed. I started taking the Lialda and then started experiencing abdominal pain, increased diarrhea, sores in my mouth, which I had never before experienced. I think it is likely from the stress and the doctor says to keep taking the Lialda. What do you think about the biopsy results? I'm thinking I may need to get a second opinion, but perhaps I am just in denial...

Any input would be appreciated.

 

[David]

Hi Katy,

Your biopsy results don't scream Crohn's Disease to me but it of course could be. Was that all that was said in the report?

How old are you?

Prior to the onset of the 5 weeks of diarrhea, did you have any chronic symptoms? ANYTHING at all. Diarrhea, constipation, rashes, eye issues, mouth issues, etc. Or did diarrhea just start one day and kept going?

Did they do any blood or stool tests? And if so, were any abnormal?

 

[emmarose2136]

When I was diagnosed with Crohn's the doctor's actually told me my biopsy was negative but with all the other evidence they concluded that it was Crohn's. Well the fact that they said it was negative greatly added to my denial at that point in time. I did not do what I should have done to take care of my self and I wish I did now. But the symptoms you are having now are Crohn's symptoms. When I was first diagnosed I had about 15 sores in my mouth. Crohn's can affect the entire digestive system because the entire digestive tract is made of the same type of cells (I did not figure that out till I was going through nursing school). It will take some time for the meds to work, unfortunately none of the treatments are really instant and they have to kind of build up in your system. My advice is to keep taking the medicine as prescribed but make sure you tell your doctor everytime any of your symptoms change. It is very scary to be diagnosed with a chronic disease, and I know you are hoping they are wrong. And there is a possibility that they are wrong. How difficult would your insurance make it to get a second opinion?

 

[KatyBuckeye]

That is all that the report said. All blood and stool samples have been negative/ within normal limits. I am 27 years-old. Prior to the diarrhea, I did have some GI symptoms. I was diagnosed with acid reflux about 5 years ago-- the acid reflux has been unresponsive to meds (and I've always felt meds actually made symptoms worse), so I don't currently take medication, unless I'm having a particularly bad day. About 2 years ago, I started having bad gas and had a change in my bowel movements. The amout of stool increased quite a bit, but was always formed. I associated this with a change in my diet (I had made a switch to a vegetarian diet a few months prior). The gas has continued to get worse, especially in the last year or so, to the point that it is just horrible and I have carried around sprays to try and cover up the smell. I also started having belching and abdominal bloating about 6 months ago. Also about 6 months ago, I had a few episodes of extreme abdominal pain that was followed and relieved with a bowel movement. It was unusual though because the pain was just SO intense. At the time, it was very concerning, but I didn't see a doctor about it because it seemed to resolve after the bowel movement. I always had regular, formed bowel movements until one day the diarrhea started and has continued since then. Regarding the mouth sores, when they first questioned me about that symptom, I didn't think I had ever had any before. After thinking about it, I may have had a sore in the past, but I assumed it was a canker sore. I remember it being different from what I have in my mouth now though. The GI doc said that my colon didn't "look bad" just by visualizing it.

Thank you for your input. I am definitely going to get a second opinion. I also have a CT scan scheduled, so perhaps that will provide more insight.

Emma Rose- I am also a nurse, but I am finding myself a bit lost when it comes to this. It's different when it's your own body that you're dealing with. I am being treated at a teaching hospital and I keep going back to the GI fellow that came into the room to give me my results. She said, "I had to double check with the attending about your biopsy results because they weren't very clear to me and I didn't want to tell you the wrong thing." So, I keep going back to that and thinking perhaps it's not a definitive diagnosis. When the attending came in, she seemed quite convinced, but I still holding onto hope

 

[KatyBuckeye]

I forgot to mention that I haven't had rashes in the past, but I do currently have a small, mildly itchy rash on my forearm. It appeared about a week ago. I did have the doctor look at it and she said it isn't a Crohn's-related rash. I've not had any eye or vision issues or any other symptoms that I'm aware of.

 

[David]

I think a second opinion is a good idea. Please keep us updated

 

[Aussie]

Hi Kate. The biopsies of your colonic mucosa are quite non-specific, without underlying architectural change, hard to call it IBD. The polyp biopsy is different though. Sounds like an inflammatory polyp or pseudopolyp - very rare to see these in adults that don't have IBD.

 

[KatyBuckeye]

Hello Aussie- Thank you for your insight. I think the inflammatory polyp (and my overall symptoms) is the reason they went for the Crohn's diagnosis. Since I originally posted this, I got a second opinion and this GI said that he doesn't believe it's Crohn's. He thinks it is lymphocytic colitis and told me to take some over the counter immodium. After doing some research and talking to other forum members, I'm not quite sure why he decided on this diagnosis, as opposed to something else, since the biopsy results weren't very clear. I'm off to get a third opinion from a true Crohn's specialist. I will keep everyone posted.