Although I am still "in denial" or think "certain;y" this has go to be something else, something has led me to joining this forum. Maybe it's time I see if anyone has a similar experience. Hello, I'm Alex (my username was supposed to be Seastar but it got separated to "Seas tar" when I created the account on my phone lol) so I apologize if it sounds like i work on an oil rig It's comforting talking to other people online (oh God what a recluse i am!! haha) Ok no seriously:
Recap: transfered colleges in Fall 2009. The dining hall food at college caused practically the whole school to have frequent diarrhea, which we called it Laxwell (seriously). I was having rectal bleeding with that(only that food gave me diarrhea, just like everyone else), from Sept. 2009 to about April 2010, when I had a stomach ache for which I went to the ER. CT Scan showed thickening, sed rate was like 95(or 125 i think? cant remember) among a couple other high ones, even though the IGb(?) was negative ; colonoscopy showed a lot of inflammation in the terminal ileum, biopsy showed inflammation.They didn't do a small bowel series or fecal occult/stool sample though! :/ Discharged about 4 days later with ileitis and the primary attending (not the GI) said she doesn't think it's Crohn's. But the ER physician suspected it (off of a CT scan...?? and hemorrhoids??sorry tmi!) (Ok, but couldn't it have been a virus? bacteria? Since I don't have the typical symptoms...) Come to my hometown where I see a different GI in June 2010 who automatically said ileitis is Crohn's and started me on entocort, without any additional tests. Back at college, I had another GI. I stopped eating at the dining hall, MRI in 2011 showed inflammation and they wanted to start me on Humira. Ok, definitely I said NO. So I went to Mayo Clinic Rochester for a second/third opinion in 2011. Colonoscopy there was clear; MRI not much inflammation and no reason for Humira he said; found/treated C Diff. He asked for the biopsy slides from to which he reviewed them and said it could be characteristic of Crohn's, but pt could re-evaluate diagnosis. Come to Mayo Clinic in Jax in 2012, same-ish story in terms of "well, if you don't take meds it could get worse"...got a new GI in Miami who's worked with Mayo, and wasn't really taking meds since I felt ok, despite her telling me to... :/ The risk of Lymphoma terrified me, and the meds made me feel worse when I was relatively ok to start with.
March 2013: MRI ent showed thickening, and stricturing(she said probably due to old inflammation). I've been off meds since and have felt like that was all a fluke over the last 3 years, feeling 100% fine...it's like I had amnesia of it all! Eating whatever i wanted with the occasional stomach upset. Graduated college and moved back home last May 2013. But this January I figured I'd make an appointment with the GI in Jax "just to make sure" all is ok, since I stopped meds last year or so. To be honest, I had been having very mild soreness when exercising, in the right lower abdomen, but I attribute that to old inflammation/scarring.
I wanted to jumpstart healthy eating and my metabolism, clearing it out, so April 1-tried Herbal D-tox once (returned it due to feeling dizzy); April 3rd-tried cayenne pepper with lemon water(felt ok!); April 4: after eating broccoli and chicken, i decided to have a bowl of warmed up canned red kidney beans and cayenne pepper: 10 minutes later....pure liquid in the bathroom like 3 times! Since then, I have had somewhat constipation (tiny bm) and some upper cramping. Taken Miralax for the last few days which feels like it stops paristalsis. Basically? I feel like I gave my system an earthquake April 4th. Seeing Dr. on May 1st. This is the first time in over a year I see one...it's difficult for me, not seeing how this affects me. I literally feel ok other than the cramping i guess...
But basically, that's it in a nutshell. Aside from entering a science laboratory myself with taking my own biopsy and assessing it, it's a minefield for me in trying to figure which doctor to choose back home...even though Jax is like 3 hours away, i saw him 2 years ago and it's tied to Rochester so....i just feel like he's going to yell at me!! :/ WHAT IF. I'm a big what iffer lol. And possibly ADD with medical doctors :ybatty: lol
Thank you to whoever reads this. Maybe there's a similar, mild case out there?
Like, usually aren't people diagnosed based off of symptoms of diarrhea? A bunch of things could cause stomach aches...
Recap: transfered colleges in Fall 2009. The dining hall food at college caused practically the whole school to have frequent diarrhea, which we called it Laxwell (seriously). I was having rectal bleeding with that(only that food gave me diarrhea, just like everyone else), from Sept. 2009 to about April 2010, when I had a stomach ache for which I went to the ER. CT Scan showed thickening, sed rate was like 95(or 125 i think? cant remember) among a couple other high ones, even though the IGb(?) was negative ; colonoscopy showed a lot of inflammation in the terminal ileum, biopsy showed inflammation.They didn't do a small bowel series or fecal occult/stool sample though! :/ Discharged about 4 days later with ileitis and the primary attending (not the GI) said she doesn't think it's Crohn's. But the ER physician suspected it (off of a CT scan...?? and hemorrhoids??sorry tmi!) (Ok, but couldn't it have been a virus? bacteria? Since I don't have the typical symptoms...) Come to my hometown where I see a different GI in June 2010 who automatically said ileitis is Crohn's and started me on entocort, without any additional tests. Back at college, I had another GI. I stopped eating at the dining hall, MRI in 2011 showed inflammation and they wanted to start me on Humira. Ok, definitely I said NO. So I went to Mayo Clinic Rochester for a second/third opinion in 2011. Colonoscopy there was clear; MRI not much inflammation and no reason for Humira he said; found/treated C Diff. He asked for the biopsy slides from to which he reviewed them and said it could be characteristic of Crohn's, but pt could re-evaluate diagnosis. Come to Mayo Clinic in Jax in 2012, same-ish story in terms of "well, if you don't take meds it could get worse"...got a new GI in Miami who's worked with Mayo, and wasn't really taking meds since I felt ok, despite her telling me to... :/ The risk of Lymphoma terrified me, and the meds made me feel worse when I was relatively ok to start with.
March 2013: MRI ent showed thickening, and stricturing(she said probably due to old inflammation). I've been off meds since and have felt like that was all a fluke over the last 3 years, feeling 100% fine...it's like I had amnesia of it all! Eating whatever i wanted with the occasional stomach upset. Graduated college and moved back home last May 2013. But this January I figured I'd make an appointment with the GI in Jax "just to make sure" all is ok, since I stopped meds last year or so. To be honest, I had been having very mild soreness when exercising, in the right lower abdomen, but I attribute that to old inflammation/scarring.
I wanted to jumpstart healthy eating and my metabolism, clearing it out, so April 1-tried Herbal D-tox once (returned it due to feeling dizzy); April 3rd-tried cayenne pepper with lemon water(felt ok!); April 4: after eating broccoli and chicken, i decided to have a bowl of warmed up canned red kidney beans and cayenne pepper: 10 minutes later....pure liquid in the bathroom like 3 times! Since then, I have had somewhat constipation (tiny bm) and some upper cramping. Taken Miralax for the last few days which feels like it stops paristalsis. Basically? I feel like I gave my system an earthquake April 4th. Seeing Dr. on May 1st. This is the first time in over a year I see one...it's difficult for me, not seeing how this affects me. I literally feel ok other than the cramping i guess...
But basically, that's it in a nutshell. Aside from entering a science laboratory myself with taking my own biopsy and assessing it, it's a minefield for me in trying to figure which doctor to choose back home...even though Jax is like 3 hours away, i saw him 2 years ago and it's tied to Rochester so....i just feel like he's going to yell at me!! :/ WHAT IF. I'm a big what iffer lol. And possibly ADD with medical doctors :ybatty: lol
Thank you to whoever reads this. Maybe there's a similar, mild case out there?
Like, usually aren't people diagnosed based off of symptoms of diarrhea? A bunch of things could cause stomach aches...