Finally decided to join

[moss]

Hello! I've been poking around the forums since I started the diagnosis process two years ago, and thanks to my recent rough patch I finally decided to join. I'm a senior in high school, and I'm more than frustrated with this disease right now.

For as long as I can remember, I've always been that kid with the super-sensitive stomach. We just always assumed that's all it was, until I hit my first really bad Crohn's flare. Living on the toilet, bleeding, weight loss (I think my weight went from 80-something to 60-something pounds), the whole nine yards. Saw a GI, went through uber-fun tests, and got diagnosed with Crohn's. That was two years ago, and thankfully things improved after that. I've been on Remicade since diagnosis, and I've gone through bouts of Asacol and Prednisone during flares. Aside from a few bumps, things weren't too bad.

And then a month or so ago the bleeding came back with a vengeance, accompanied by random and horrible abdominal and pelvic pains. Thought it was a UTI, nope. Nephrologist thought it was crystals in my urine, nope. I just had an MRI done last week, and my GI thinks the inflammation in my colon got bad again. I had my Remicade levels checked and everything there was fine, but now he wants to possibly change around medications, because Remicade might have run its course. Sooo... two years later and I'm practically back to square one. I'm frustrated and tired, and I really just want one good, solid, definite answer to everything. But doesn't everyone?

I came here because I've read so many threads and seen so much support already, and I could definitely use some of that right now. It's hard for me to really talk to people about this, because I hate giving other people more to worry about. I'm hoping that everything settles down soon, and that I maybe find some answers here. Thank you for reading!

 

[pink&green]

Hello Moss and welcome to the forum. So sorry you are having a difficult time:ghug:. Glad you found the forum there is lots of advice and support on here. Are you currently on any maintenance medication and have you spoken with your GI about other Biologics since the Remicade is no longer working?

 

[moss]

Hello Moss and welcome to the forum. So sorry you are having a difficult time:ghug:. Glad you found the forum there is lots of advice and support on here. Are you currently on any maintenance medication and have you spoken with your GI about other Biologics since the Remicade is no longer working?

The only thing that I'm on currently is the Remicade, plus something for the bladder spasms that I completely forgot the name of.

I have an appointment tomorrow, and I think my GI wants to discuss a possible switch to Humira. Which I'm kinda terrified of, because I'm not crazy about the self-injection idea. He also mentioned a possible course of Prednisone, or switching to/adding 6-MP. I guess I'll see.

And thank you for the welcome!

 

[Grumbletum]

Hello Moss
Another welcome from me too. I know how frustrating and tiring it can be to be ill for so long. I was wondering if they had ruled out the possibility of a fistula with the MRI? I had one bowel to bladder and experienced pelvic as well as abdominal pain. Sometimes I would test positive for a UTI and sometimes not. There were other symptoms thought, like bubbly cloudy urine and passing gas when I peed. I'm guessing you haven't experienced those?
I really hope they can get you some answers and some relief really soon.

 

[moss]

Hello Moss
Another welcome from me too. I know how frustrating and tiring it can be to be ill for so long. I was wondering if they had ruled out the possibility of a fistula with the MRI? I had one bowel to bladder and experienced pelvic as well as abdominal pain. Sometimes I would test positive for a UTI and sometimes not. There were other symptoms thought, like bubbly cloudy urine and passing gas when I peed. I'm guessing you haven't experienced those?
I really hope they can get you some answers and some relief really soon.

Thank you!
According to the doctor, the only thing the MRI showed was inflammation in my ileum and colon, and nothing else. It was a weird thing, though, because the pain was my only symptom. One test showed blood and protein in my urine, but the one the nephrologist did only showed crystals. The most recent test showed nothing in the urine at all
My first thought was a fistula, but like I said, the pain was the only symptom I experienced. My doctor thinks it's just bad colon/rectal inflammation that's pressing on nerves and making everything uncomfortable. The whole thing's just been really bizarre.