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Betnesol enema for one month - still bleeding

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Ulcerative Colitis
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Posted 1/7/2011 11:56 PM (GMT 0)
Just curious to hear some opinions on what you think my Dr. will do. I have been on Betnesol steroid enema (5 mg in a 100 ml dose) nightly for a month now. The bleeding has subsided substantially (I was bleeding A LOT!), but I am still going the same # of times (4/day) and still seeing a fair bit of blood when I do go. As I understood things, the steroid enema should have fairly quick and significant effects. I am wondering if my Dr. will keep me on the enema because I have had improvement or if he will ramp things up a notch because I am still having bleeding even after a month.

The side-effects that I have suffered from the enemas are unreal! I know that oral steroids have more of a systemic effect that enema based ones. I have had major dizziness, mood/alertness issues (started off kind of manic and energetic, now have NO energy or strength), massive moon face, hair growth, etc. I have been letting both my Dr. and pharmacist know about these issues. I am almost hoping that the Dr. will just give up on the steroids, because I think they are making me feel worse than the UC right now.
Posted 1/8/2011 8:23 AM (GMT 0)
Have you used any of the 5ASA (mesalamine) enemas before the steroid?
Call your doc and ask to switch to them or alternate..to eventually get on them fully.

If you're having those side effects, you have a choice of whether to use them or not.

When you were originally diagnosed at 15cm of the rectum..what meds were you put on?

When was your last scope to find that it had spread upward?

q
Posted 1/8/2011 2:59 PM (GMT 0)
I'm so sorry for your side effects and all! I've not had any moon face, hair, etc from the steroid enemas.
I second everything Q said - have you tried the 5ASA enemas.....?
Posted 1/9/2011 5:37 PM (GMT 0)
Yes - I was put on a 5 ASA enema prior to the Betnesol. I had a day of improvement followed by a week or more of no improvement/back-sliding. Frustrating. When I was first diagnosed back in 2006, the only med that I was put on was a one month course of Salofalk suppositories. There was no follow-up plan for me at all. When I had subsequent flare-ups, the Dr. would phone in refills for the Salofalk and that was it. Finally, last May, I was able to get it and see the Dr. and get another sigmoidoscopy (I have never had a full colonoscopy) - that was when see saw that the scope and extent of the disease had spread.

I *FINALLY* got proactive with my health in the Fall and demanded to be seen by a different GI. What a difference! Put on oral meds and enemas right away. Dr. is also going to do an endoscopy and full colonoscopy to get a full picture of everything. I am going in Wednesday morning and am hoping to get the scopes done within the next few weeks.

Thanks for your input!
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