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Ulcerative Colitis
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Posted 7/6/2021 7:08 AM (GMT -5)
My GI wants to try me on steroids. I’m terrified of adrenal shock. I’m scared of the psychological affects on my already severe anxiety and the weight gain. Any advise would be appreciated. So far still on rectal meds. My ibd has spread to 30cm. I’ve never been on oral meds. Any advice would be appreciated
Posted 7/6/2021 11:58 AM (GMT -5)
Request oral mesalamine, request mesalamine retention enemas 4g.

There are many topical options and dosages to try.

q
Posted 7/6/2021 12:11 PM (GMT -5)
yep, what q said - there are a bunch of non-steroid options to try - tell your doc no thanks -


TT
Posted 7/6/2021 1:36 PM (GMT -5)
What kind of rectal meds are you already taking, and for how long?

If recal meds don't work then chances are adding oral won't help either since nothing is more direct than topical rectal meds. I fiddled with rectal meds for too long in my first flare in order to avoid prednisone and then my UC went from being just proctitis to my entire colon left side became inflamed. Not trying to scare you, just trying to help you be realistic.

Steroids are indeed awful but it's better to nip the inflammation now than let it spread and require more intensive interventions later.
Posted 7/6/2021 5:28 PM (GMT -5)
I’ve been on 1g rectal meds for years. Increased to 2x per day when flare started. Done nothing. Had colonoscopy. Inflammation has in creased from original diagnosis of 8cm rectal to 30cm left sided
Posted 7/6/2021 6:05 PM (GMT -5)
So annoyed I haven’t been spoken too. They just wrote up all these meds and didn’t even discuss it with me
Posted 7/6/2021 7:24 PM (GMT -5)
Did your doctors prescribe steroids because they think mesalazine med (Pentasa) caused your pancreatitis? I think that Quincy gave you excellent advice when she told you to ask for copies of all your test results + recent medical records. Additionally, you would get more targeted advice here if you listed a signature with the diagnosis you already received and med(s) you already take + dates of use. / Old Hat (40 yrs with left-sided UC; in remission taking Colazal)
Posted 7/6/2021 8:16 PM (GMT -5)
Ok I will update my bio. Thanks. No they don’t think the mesalazine caused my pancreatitis. But they don’t know what caused it either. Had MRCP and MRI on liver and pancreas. They have fully healed and returned to normal. They’ve done many tests for clotting factors and autoimmune pancreatitis. Checked my liver for sludge. No answers as to why.
Posted 7/6/2021 10:03 PM (GMT -5)
Then it seems that a big question your docs need to answer is what med(s) you need to achieve UC remission & stay in remission post-steroid treatment. In case they decide you can take oral mesalazine, look up Colazide online-- because it is reviewed on NPS Medicinewise, where they say it's manufactured in NSW by Frenesius Kabi. (Should be acceptable to treat 30 cm. inflammation if comparable to Balsalazide disodium.) Have you been released from hospital? / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 7/6/2021 11:21 PM (GMT -5)
Update. Mesalazine orals and steroid enema morning. Mesalazine enema evening
Posted 7/7/2021 12:42 AM (GMT -5)
Good. How did the process go for you to get them?
q
Posted 7/7/2021 1:10 AM (GMT -5)
The hospital GI prescribed them. Hoping it doesn’t cause pancreatitis again or I don’t know what to do next. I have stayed on my Pentasa enema even when I was being treated for pancreatitis

Post Edited (Theanxiousaries) : 7/7/2021 3:26:16 AM (GMT-6)

Posted 7/7/2021 11:22 AM (GMT -5)
I don't think you have to worry about the medications causing pancreatitis, your drs now say they don't believe that is the culprit. I looked this morning on the Mayo Clinic's website & according to them with some people there isn't a cause they can find after normal testing. Who knows, perhaps you are one of them.

I had a neighbor that has this for several years & always ended up in the hospital. She had a digestion issue with fats & after being hospitalized with her husband deployed & 2 kids at home she finally listened to her drs. She cleaned up her diet & has not had an attack in 4 years.

I hope you get to feeling better soon.
Posted 7/8/2021 8:22 AM (GMT -5)
They should have put you on just oral mesalamine before moving to steroids. Now you won't even know what's working with two new meds.
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