Although I’m finally in remission (I’ve been able to push my remicade to 10 weeks and I’m feeling the best I’ve felt in a long time) I have this one thing that still really bothers me. I do eat a lot of problem foods (I can’t live without coffee) I’m not going to the bathroom as often as I was just 6 months ago.
Here are some details on my Remicade use and history about 40 infusions under my belt so far:
I started taking it my sophomore year of high school and after the first few infusions, I started feeling better. I was never hospitalized for my uc buy i was certainly sick. Previously id tried prednisone asacol, methotrexate, etc. My doctor has always encouraged me to push my infusions farther and farther apart but up until recently, I would feel it wear off about a week before my next dose.
For the first few months to a year (I’ve forgotten by now) I was also on methotrexate but my forgetfulness about taking my drugs lead me to realize that I was feeling good without it.
Like I said, I was afraid to push past 7 weeks then 8 weeks. Then I was forced to reschedule a dose about two months ago and it pushed me just past 9 weeks. I was surprised but I felt pretty great. I still have belly aches but it’s usually for good reason. I’m not a healthy eater and I’m a stress fiend.
I owe it to the remicade and my family and boyfriend who have all supported me very much. Hopefully I will soon be one of those cases my doctor talks about that only gets infusions 4-5 times a year!
Now back to my story,
When I eat though (anything, not just trigger foods) my stomach growls. Like, these crazy grumbles that just make everyone in the vicinity laugh. Im a filmmaker and I’ve ruined a few takes with my noisy tummy! Everyone around me thinks I need to take a poo break but often that’s not the case. I can not only hear it but feel everything churning, full or empty stomach.
Long story short, I wanted to find out if anyone else is digesting so vocally and if there’s anything I can do to calm things down. Thanks!
I was diagnosed with UC when I was 14. Im currently living in NYC, in remission thanks to 40 or so doses of Remicade (it is amazing).
Your Remicade story is inspiring. I had my 4th infusion yesterday/during a flare. I have to drive 72 miles to my appointments/and bathrooms are every 20 to 30 miles. It was a joy. (sarcasm)
Anyway, I wish that I was well and healthy after four infusions plus I am on prednisone now. I guess I just need to give my body time to heal. I am praying for the same results!!! I needed to read this today after being so ill. Thanks
Oh by the way, I have the LOUDEST stomach ever. Rumbles, grumbles, you name it. It must come with the territory.
I hope that Remicade works out for you! It’s taken a few years but it really gave me a steady place to start!
HI Tracy! Just read your reply to Grumbling in the Tummy. I too am on remicade- its actually a year this month! It has really been a tremendous help in keeping colitis @ bay. For me it was a slow progression but I kept seeing improvements! It wasnt until this year though that things became so “normal” again. I feel like I did before I was diagnosed. So as long as you are seeing improvement stick with it! Good luck!
I also have an incredibly loud and grumbly stomach. Tonight I was at the hospital for an iron infusion and the nurse did a double-take when she heard my stomach. I assume it is just a side effect of the ulcerative colitis?
I haven’t tried Remicade yet… But might ask my doctor about it.
Wondering if anyone has any ideas about our rumbling tummies?
I too have a grumbly tummy. Doesnt matter if I just ate or havent eaten and sometimes it is like a little monster is about to bust out! haha
I’ve been on Remicade for over 10 years. I take 4 vials every 6 weeks. Miracle for me. But the rumbly tummy has never stopped. It’s a part of my life and when it happens I just smile and shrug. If I don’t act like it’s a big deal, the people around me will act the same. Sorry about the ruined film takes (that IS a bit funny).
You have to admit, though. A noisy gut is better than a doubled over in pain gut or one that is mad-dashing to the bathroom!