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Ulcerative Colitis
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Posted 5/2/2018 10:43 PM (GMT 0)
Long story short, when I got down to 5 mg prednisone, everything went to crap (pun intended). Urgency, pain, blood, and multiple BMs per day. It was actually worse than before I started treatment. Before my diagnosis I would have a “bad morning” every other day or so. On 5 mg of pred it was bad everything.. bad morning, bad day, bad evening. only having 5 or so toilet trips per day but when two or three of those mean being in the bathroom for an hour.. it still sucks. Couldn’t see my Gastro til yesterday because she was away.

She has now put me on entocort and cortifoam. First cortifoam treatment last night and first 9 mg dose entocort this morning. Today was what I imagine life is supppsed to be like. No long or painful BM this morning, a small one around lunch with no pain (didn’t notice whether there was blood), and when I got home there was no urgency despite a 45 min brisk walk home. I’m going to the gym shortly hoping to jog on the treadmill. That will be the true test because in the worst of my flare I could barely run 1 mile before needing to lock myself in the bathroom.

Is it possible these new meds have worked so quickly or is this just coincidence?
Posted 5/3/2018 12:36 AM (GMT 0)
I have had things turn around overnight without the addition of new meds & I have seen many people on remicade turn around nearly overnight. in your case, I am not sure what caused it, but I would remain cautious. One good day may not reflect the days to come. Hopefully it is the start of remission, but it's hard to tell. What else are you using for your maintenance? Have you been using mesalamine enemas? cortifoam is great, but it's not a longterm solution, neither is entocort or pred.
Posted 5/3/2018 12:59 PM (GMT 0)
Steroids can work seemingly overnight with some folks (entocort and cortifoam). If your symptoms returned at only 5mgs of pred (flaring again at a taper to 20mgs would signify a lot more severe case), then you have some really mild inflammation and I can see steroids treating that fast.
Posted 5/3/2018 2:35 PM (GMT 0)
Sounds like you have inflammation that is just tamed at >5mg, and gives symptoms at 5mg. It is usually not possible to turn the underlying IBD around so quickly because there is a life cycle to the cells in our immune system that are part f the inflammation response.

But symptoms can turn quicker. The new meds are both topical steroids, and could have quickly suppressed inflammation. (If they were removed, you might expect the inflammation to reassert quickly if nothing else has changed with the underlying IBD).

You may still have ups and downs because when the inflammation is suppressed, they body tries harder to inflame. Inflammation has a purpose. Hopefully this will allow time for you other meds to get a foothold and reduce the IBD response so that when you wean the steroids, the symptoms do not come back with a vengeance.
Posted 5/3/2018 3:06 PM (GMT 0)
Thanks everyone for all of the responses!

Symptoms started to come back at 15 mg and got progressively worse as I tapered down to 5mg. I think I may have posted something to that effect seeking advice because it was my first course of treatment and I didn’t kno what to expect. I was also on mezavant and salofalk. I’m not taking any of those meds anymore. I’m currently on cortifoam and 9mg of entocort daily.

I cspoke too soon because this morning was awful. I was on the toilet for about an hour before showering with another 2 BMs before leaving for work. Pain, nausea and bleeding. Sigh.
Posted 5/3/2018 3:58 PM (GMT 0)

Ewok89 said...
I was also on mezavant and salofalk. I’m not taking any of those meds anymore. I’m currently on cortifoam and 9mg of entocort daily. I’m currently on cortifoam and 9mg of entocort daily.

Why did you stop mezavant and salofolk? It doesn't make sense to be on only steroids (cortifoam and entocort) which are but a temporary solution...
Posted 5/3/2018 6:19 PM (GMT 0)
^ i forgot to mention the salofalk was suppository(idk if it’s available in other formats eg pills) so my dr told me to stop that while I use the cortifoam for a week and told me to then go back to the salofalk.

My doctor told me to stop taking mezavant.

I have an appointment with her in again in just under a month. She only prescribed a month’s worth of entocort.

Post Edited (Ewok89) : 5/3/2018 12:33:16 PM (GMT-6)

Posted 5/3/2018 8:33 PM (GMT 0)
I have other related questions but don’t want to spam the board.

UC was confirmed through biopsy, but the dr was only able to examine about 45 cm of my colon because the inflammation was so severe and she didn’t want to risk perforation. At what point should I be insisting for another colonoscopy? Naturally I’m a little worried/paranoid about whatever else could be going on since she wasn’t able to complete it.

How long do I give the entocort to kick in? I ****ed up with the first course of treatment.. I really should have gone back to the doctor earlier. I don’t want to do that again. I have been feeling really really reallllllly awful the past couple weeks (physically and mentally) and I don’t think I can do this for a month to just be told “I was really hoping that would work, let’s try something else instead”.
Posted 5/3/2018 8:49 PM (GMT 0)
You are seriously under-treated, as you're only on entocort ec (also known as uceris/clipper), and a steroid foam. You have inflammation up to at least 45 cms and possibly beyond (scope could not go beyond it).

My first question to your doctor would be this: "Right now I'm on all of these temporary steroids, but I am not taking even one (1) maintenance medication, what maintenance medications do you plan to give me? I cannot stay on steroids forever...."

1.) Insist on being on an oral mesalamine like mezavant (4,800 mgs a day) as a maintenance treatment.

2.) Insist on being on a rectal mesalamine (enema or foam), and transitioning to it once you are done with the steroid enema.

I would give any steroid at least 2-3 weeks to kick in. If they do not by then, they will not. You might need the much stronger prednisone, should you not get results in 2-3 weeks.

I would not rush another colonoscopy. You'll get enough colonoscopies in your life, as a UC patient as it is lol. Next scheduled one will find out the full extent. Right now, focus on your noticeable symptoms and healing completely to get rid of said symptoms.
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