Hi all, thanks for taking the time to read this, sorry if this is confusing as it’s a lot to type and go through.
Throughout my life I have had many GI issues, ever since age 12 I have been told I have Lymphocytic colitis, at age 12 I also had my appendix out. At 16 I had gastroparesis for almost an entire year where I couldn’t keep anything down, since then I have been fine up till 2018.
In January I got sick with something, I think food poisoning and started having stomach pain that never goes away, in early march I went to see a GI who ran lots of tests and told me he thought I had IBS and started me on medicine for that to help pain/other issues. No IBS medicine helped with pain that I took and still was having issues. He ordered a lactoferrin stool test and it showed positive, which then my doc said he thought it was the colitis and IBS, so he had me take entocourt and levsin. Neither of those helped any, so he switched me to prednisone and for pain he gave tramadol.
In late march I had to be hospitalized as I was doing so bad and in the hospital I was given IV solumedrol which helped my pain 50%, more than anything else had. However in the hospital I was given a new doc who took me off of it and said “it wasn’t needed”. I also had a CT test done in the hospital that showed inflammation. My ER doctor said I had Pancolits based on reading the CT.
I was then told I needed a colonoscopy so I got that done, my hospital doc said everything looked fine in the colon, however when the bioscopies came back the pathologist said that inflammation was in there and called it ““resolving infectious colitis””.
After I got out of the hospital I went to get a second opinion from a new GI doc as I didn’t very much like my previous docs, he thinks I might have crohn’s in the small bowel and has me scheduled for a MRI with contrast and said I might need to do a pillcam after as well. He also said that Lymphocytic colitis would be unusual as I am a male and am young. He gave me Delzicol to try and said a tricyclic antidepressant might help the pain.
Questions:
So to summarize I have now seen many docs (3 GI specialists/ER docs/etc) who say different things, the treatments for IBS and Lymphocytic colitis didn’t help me so is it safe to say I have something else such as crohns/etc..?
I don’t understand how my lactoferrin stool test is positive, my CT showed inflammation, and my colonoscopy bioscopies showed “resolving infectious colitis” yet I am not getting 1% better from being treated on medicines for these things?
I have looked into Crohn’s and saw that bloody stools is a symptom usually, is it still possible to have it with no bloody stools?
My biggest complaint is stomach pain, the pain never goes away and hurts constantly no matter what I do, sometimes the tramadol will help but only about 15% of the pain will go away for a few hours then come back. The only thing that helped me so far is the IV solumedrol I was given in the hospital, does anyone know why that would help me but the entocort/prednisone wouldn’t?
Would a Tricyclic antidepressant help for stomach pain and if so which one would be the best?
I have been told all my life throughout 3 colonoscopies that I have Lymphocytic colitis by many different doc’s, Is it likely I have Crohn’s and have been misdiagnosed all these years or could a male under 20 have Lymphocytic colits?
Also, could someone explain more about Crohn’s in the small bowel, like what that means and how it is treated (for pain/etc.)?
Sorry and thanks.
Throughout my life I have had many GI issues, ever since age 12 I have been told I have Lymphocytic colitis, at age 12 I also had my appendix out. At 16 I had gastroparesis for almost an entire year where I couldn’t keep anything down, since then I have been fine up till 2018.
In January I got sick with something, I think food poisoning and started having stomach pain that never goes away, in early march I went to see a GI who ran lots of tests and told me he thought I had IBS and started me on medicine for that to help pain/other issues. No IBS medicine helped with pain that I took and still was having issues. He ordered a lactoferrin stool test and it showed positive, which then my doc said he thought it was the colitis and IBS, so he had me take entocourt and levsin. Neither of those helped any, so he switched me to prednisone and for pain he gave tramadol.
In late march I had to be hospitalized as I was doing so bad and in the hospital I was given IV solumedrol which helped my pain 50%, more than anything else had. However in the hospital I was given a new doc who took me off of it and said “it wasn’t needed”. I also had a CT test done in the hospital that showed inflammation. My ER doctor said I had Pancolits based on reading the CT.
I was then told I needed a colonoscopy so I got that done, my hospital doc said everything looked fine in the colon, however when the bioscopies came back the pathologist said that inflammation was in there and called it ““resolving infectious colitis””.
After I got out of the hospital I went to get a second opinion from a new GI doc as I didn’t very much like my previous docs, he thinks I might have crohn’s in the small bowel and has me scheduled for a MRI with contrast and said I might need to do a pillcam after as well. He also said that Lymphocytic colitis would be unusual as I am a male and am young. He gave me Delzicol to try and said a tricyclic antidepressant might help the pain.
Questions:
So to summarize I have now seen many docs (3 GI specialists/ER docs/etc) who say different things, the treatments for IBS and Lymphocytic colitis didn’t help me so is it safe to say I have something else such as crohns/etc..?
I don’t understand how my lactoferrin stool test is positive, my CT showed inflammation, and my colonoscopy bioscopies showed “resolving infectious colitis” yet I am not getting 1% better from being treated on medicines for these things?
I have looked into Crohn’s and saw that bloody stools is a symptom usually, is it still possible to have it with no bloody stools?
My biggest complaint is stomach pain, the pain never goes away and hurts constantly no matter what I do, sometimes the tramadol will help but only about 15% of the pain will go away for a few hours then come back. The only thing that helped me so far is the IV solumedrol I was given in the hospital, does anyone know why that would help me but the entocort/prednisone wouldn’t?
Would a Tricyclic antidepressant help for stomach pain and if so which one would be the best?
I have been told all my life throughout 3 colonoscopies that I have Lymphocytic colitis by many different doc’s, Is it likely I have Crohn’s and have been misdiagnosed all these years or could a male under 20 have Lymphocytic colits?
Also, could someone explain more about Crohn’s in the small bowel, like what that means and how it is treated (for pain/etc.)?
Sorry and thanks.
