I'm new and well, here's my story!

[Mendez0414]

I'm 22 years old and I'm stuck without a diagnosis. Almost a year ago I went to the ER with severe stomach pain that affected my muscle in my back and any movement was intense. They decided that I had a infection and sent me home with some antibiotics. Well I ended up going right back a week later because those antibiotics obviously did not help. A week later, I went to follow up with my regular doctor and he decided to do a colonoscopy. Well this is where it gets complicated and kind of upsetting still. It took him nearly a month to get back to me to tell me he wasn't really sure what I had. My terminal illeum was inflamed and had a few ulcers in it and my ascending colon was a little inflamed as well but my lab results showed UC and Non specific. The inflammation was where CD should be but then again I had some symptoms of UC. It's so frustrating.

My GI just switched me from Asacol (2 pills, 3X a day) to Pentasa (2 pills 4x a day). and I was able to wean off of the prednisone in January but the problem is that I have more bouts of pain without it. Now I have a lot of joint pain in my hips, knees, and shoulders and I don't like the Pentasa. They are huge! Just as big as my multi-vitamin! I take 77 pills a week and it's so hard to remember to take my pills around my busy schedule. Well anyways that's my story up to date!
Thanks for listening to my little rant.

 

[David]

Hi there and welcome

Based upon what you've told us, my GUESS is that you have Crohn's Disease. Ulcerative Colitis would not affect your terminal ileum like you mentioned (it can have minor "backwash" inflammation with UC) and the terminal ileum is the most common place for Crohn's to target. In addition, there have been studies about IBD related pathology and frankly, they get confused between UC and CD a lot.

I know it's hard to take all those pills but it's so important

Again, welcome. I wish you well.

 

[ThankGoodness]

I had lots of trouble with Pentasa too because I am terrible at swallowing pills. After a couple months I was a pro though. LOL. I hope you feel better soon I'm new here too but this place is great.

 

[Angrybird]

Hello and welcome to the forum :bigwave: I too have been on Pentesa and yes the pills are big but I did find that taking each pill with a gulpful of water helpful. From the what you have said above are you sometimes forgetting to take some of the pills? If so pls look into ways to remember, missing pills could be why some of the pain is back as your body is not settling to a difinitive dose....obviously if things persist then get onto your doc.

I will keep my fingers crossed that you feel better soon hun. It's really good you have joined as there is a lot of info and support here

xxx