worsening symptoms - what meds are next?

Hi again,

I have currently been in a flare since April.  I do have good days and bad but I go to the bathroom between 15 and 30 times a day.  I can't get the bleeding under control, my bm's are soft but mostly formed but before the bm's come, I poop almost a liquid.  I got a notice in the mail that I am due back for a followup appointment with my GI and I am scared to death of what meds he will put me on.  Always before the Asacol and Rowasa worked in eventually putting me into remission but I can't seem to get on top of it this time.  I don't feel I should go on Pred.  I am already over- weight and trying hard to lose.  I have the beginnings of osteopena and don't want to risk further bone loss.  Everyone I talk to has a different opinion of what I should do but of course, they don't have this disease.  It is all so confusing!  Does anyone have suggestions on what meds my GI will suggest when I go for my visit?  To top it all off, I have a hernia and have to have it operated on.  What a mess.  Sorry to be such a drag but I have had enough!

Usually the next step, if 5ASAs are not working, is immunosuppresants - 6MP or Imuran. Yes, the idea is scary. These are big drugs and the choice to take them is not to be taken lightly. It means regular bloodwork to check kidney and liver functions. However, for some people, like me, they are a great thing! I found I was steroid dependent and the 5ASAs themselves were not working for me. After a month of hemming and hawing and reading posts and asking questions, I decided to go for it. Another thing - they don't work immediately :( They take 3+ months to build up in your system and work properly, so usually during the wait, some prednisone is required to tame symptoms.

While on pred you should make sure you're taking 1500mg of calcium with vitamin D and doing some weight bearing exercise to combat the bone density loss.

Don't get all worked up. Discuss your fears and concerns with your doc. (Ask about Quincy's suggestions too.)

The next step is not necessarily immunosuppressants. Have you ever used hydrocortisone enemas? Those do not have the immediate systemic effect that Pred or other oral steroids do on the body, but they can bring fast topical relief to left-sided UC suffering. It depends on how far up your inflammation goes + its severity. If the descending colon is severely inflamed, it could take 3 months of daily Cortenemas to bring that to remission. (Been there / done that!) / Old Hat (nearly 30 yrs with left-sided UC; currently on 5 Colazal daily for July flare in descending colon; should be back in remission again soon)

I have never used the steroid enemas, so I forgot about those - Thanks Old Hat!

Annie - about the gas... Just making sure that you're expelling the air from the enema bottle before administering. If no, the excess air could be contributing to gas.

Another thought: I found I had more gas with the Rowasa the more my colon healed. It was kind of a hint to me to start tapering or using less than the full amount - half the bottle, perhaps.

From what I've heard - the steroid enemas do have the side effects of oral pred, however, since your body is not absorbing so much, the side effects are less or take longer to come into play.

If your inflammation is in the 1st 35 cm., then the steroid enemas could well be your ticket. In my experience, relief from bleeding/mucus/urgency was fast + the main side effect I noticed came about 2 months or more into treatment: thinning hair. One has to taper the enemas if on them longer than 3 weeks; you cannot quit the hydrocortisone jobs cold turkey at that point. But-- the gastro might offer you the option of Budesonide enemas, a steroid that has much less systemic effect than hydrocortisone. So-- I'd say don't be afraid to consult the gastro if your current meds are not relieving your symptoms-- there are other options besides Pred out there. / Old Hat