Entocort for Bowel Ulcers

[LaurenAuf]

Hi Everyone!

I got my second opinion today at UCLA IDB Center and i am starting to feel relieved about my situation. Just for the cliff notes version- I was diagnosed with Crohn's 11 years go and have been relatively symptom-free and feeling great.
UNTIL... a recent Pill Cam discovered MAJOR ulcers dotting my while small-mid bowel. It was a huge surprise because my GI was thinking I was in remission and we were about to stop Pentsasa and consider it a mis-diagnosis of Crohn's!


Anyways, my last GI was insistent on starting Humira immediately to cure my mid - small Bowel Ulcers from Crohn's. I was terrified.
Today, the new GI I sought out said we could try a combo of Entocort (4 months) + 6-MP (for 6 months) and see where we land in terms of ulcer healing in 6 months.

I have read the Entocort horror stories and really hope i don't BLOW UP as some have said weight gain can be major and I'm always struggling to stay a size 8/10!

In any case, at least I can put the Biologics talk to BED for a few months. I barely take a Tylenol when I have a headache so to go from NOTHING to Humira was petrifying!!!

QUESTION:
One thing thats on my mind now, has anyone heard of experiencing a worsening of bowel ulcers from Entocort? I am taking it to treat these gaping ulcers but some of the articles and studies I just scanned good ol' mr. google now have me worried that Entocort can actually cause ulcers to bleed out??!?!?!

Is that a valid concern? Ulcers are scary in themselves as you could be bleeding to death and some people have absolutely no signs of it!

ANY ADVICE, INSIGHT OR HELLOS super appreciated!!!
Thanks for reading! I am LIVING for this forum!!!

 

[Robrich]

Hi Lauren
What a bummer you think you are doing well and then it hits you in the face.
There are ways to lessen some of the side effects of the entocort.
Everyone reacts differently so keep a close watch on yourself for changes, mental and physical.
I had to work my way up with ent as the full dose made me a little bit psycho at first. Now it's ok.
Exercise especially sweating and saunas will help with the water retention thing and also help clear your system. Stay away from salty snacks and Asian food with salty soy sauce and msg. Stay on a good healthy diet and you won't gain weight. Entocort can also stimulate the appetite and cravings so keep the snacks and junk food far away
That will help a lot.
I have been taking entocort for several years and I only experience mental issues so be aware it can cause some anxiety and restlessness.
If you feel ok stay conservative and save the humira for down the road as it's rare any treatment will work forever and it's nice to know you have options.

Are you happy with UCLA?
Who did you see there?
I go there also.
Good luck

 

[LaurenAuf]

Hi Robrich!

Thanks for your advice! I definitely am taking it to heart and will be staying away from sodium HARD CORE for the next 56 days! I asked the Pharmacist at Walgreens about the weight gain and he goes "Yeah- you probably will. It will be NOTICEABLE"....
Umm, gee, THANKS JERK!
Anyways, I appreciate your response. YES, i have to say, UCLA IBD has been a GODSEND. I immediately knew once I met Dr. Hommes that this was the place for me.
They are way more nurturing and soothing than Cedars. Everytime I left the IBD Center at Cedars I felt like I was marching towards death. I feel like they are more aggressive with the way they treat Crohn's than UCLA- which is more of a step-up approach.
I feel like finding Dr. Hommes has given me a new outlook on LIFE. Is it just me, or have you had a similar good-experience with UCLA?
I don't know but compared to Cedars I feel like a NEW WOMAN!
How long were you on 6 MP/Imuran before you got you nasty side effects? Were you able to repair the damage?
I was on 6MP about 10 years ago but only for 2 months cause all my hair fell out.
I'm starting it back up again in 2 days and hoping I can prevent the hair loss with a lot of Biotin and Zinc!

Curious to hear more about your story and personal experience!
Thanks!
Lauren