• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New & forever flaring (need rectal and joint pain advice)

Hi there! I'm finally joining this forum after using it as sort of a personal crohns google for quite a while now!
overview of my story: diagnosed in 2010 at age 17 after having bowel problems for a while that docs were struggling to figure out. Lots of testing for lactose intolerance, etc. Eventually got so sick that I had rheumatoid arthritis so bad I could hardly walk in the morning, large bumps all over my body, mouth sores, and just general misery. So finally they admitted me to the hospital for testing and I was finally diagnosed with Crohns that was affecting pretty much everything from mouth to anus. Started Prednisone, imuran, asacol, Prilosec, and then eventually remicade around this time. Remicade worked amazing for me for about 4 years and then I developed antibodies and things haven't been stable since. I had stopped taking all the pills after a couple years. After Remicade I tried Humira. It never really put me in remission but probably helped a little bit. I was still having a lot of problems especially in the rectum and sigmoid colon though, even after doubling the dose of Humira, so my doc recently decided to switch me to Entyvio, a new drug that he seems really optimistic. The only big negative is that it can take a really long time to be effective. I started in the end of May. This waiting period has been killer. I am sicker than I have ever been since diagnosis, the joint pain is back, constant rectal bleeding, major fatigue and anemia problems, just horrible. To help bridge the gap I'm back on Imuran and am now trying Budesonide as well (started 1 week ago).

It seems like nothing is really working. It's majorly affecting my quality of life at this point and is one of the major reasons I'm probably going to have to move back in with my parents.

I would love any advice people may have for rectal pain, which I suffer from a lot at the moment. I've tried Preparation H suppositories, but they don't seem to do much. I would definitely be interested in trying other pain relieving suppositories if there are any, as the pain feels like it is just right there on the inside.
I'd also appreciate advice from people who deal with joint pain from crohns. I just take a lot of Tylenol for it now but I feel like that's not a great thing to do in general.
 

my little penguin

Moderator
Staff member
Hve you tried EEN ( exclusive enteral nutrition ) formula only ?
This can be as effective as steriods
Your GI can prescribe suppositories/enemias with steriods /5-Asa in them that can help the rectal area
I can say it's the hardest to treat and typically the last thing that heals on Ds

Good luck
 
Might be a good idea to keep a log so as to track how things are going with the Entyvio. That can be helpful whenever trying a new med. If you havent already, definitely share the symptoms you've mentioned– the increased pain and bleeding– to your doctor and see what they say. Based on their determination maybe it has been long enough to re-evaluate the med and talk about other options, or at the very least have a conversation about pain management because you don't deserve to be dealing with so much pain :(
 
Sorry I never got back to you guys after this post, but I thought I would update in case anyone stumbles across this looking for similar advice.

IV Steroids helped tons for the flare and I eventually got switched from Entyvio to Stelara.

For rectal pain Mesalamine enemas were helpful for a while. You do them before bed, hold in a particular position laying down for at least 30 minutes and then try to ideally hold it overnight. After doing these for several weeks though I began to feel like they were just making my morning diarrhea worse though. But they helped when I felt like the inside of my rectal was just so inflamed, almost like raw.

Another thing I've liked is Hyoscamine tablets which dissolve under your tongue and are supposed to help with cramping and spasming. This helps for when I have rectal pain that feels like I have to go to the bathroom but there's really nothing there.
 
Top