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Very discouraging scope today. What next?

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Ulcerative Colitis
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Posted 8/16/2018 3:11 AM (GMT 0)
I have entered a new stage of reality since the scope this morning.

The inflammation has moved downward to the rectum. (Doesn't it often move up?) I have had increased symptoms for months (no life) so this is no surprise but still a disappointment.

I will try to obtain Uceris foam that the MD says will give better coverage. Will the foam go higher into the left side than hydrocortison enemas? I will use Canasa which I in past I thought was just for rectal treatment only.

I will ask for a short course of pred. which I have been avoiding for 8 years. Am I crazy? If not, it will make me crazy. But could it be the lesser evil? The doctor mentioned Humira a couple of times so that would be next. Do we expect pred and Humira to treat rectal inflammation?

Where does oral mesalamine fit into all this? I take Lialda but have generic on order from Canada. How far down is it effective?

Of course I will wait for biopsy results and another appointment before some of these decisions are made. Since only the left is involved, at least this does not appear to be Crohn's (I would guess) as one doctor suspected.

Sorry for so many questions; but I would like to get a grip on the "big picture".
Thanks!
Posted 8/16/2018 2:21 PM (GMT 0)
Oral is not great for the far end. I am not sure if foam or enema goes higher, but think is is not too different.

I would not rule out Chrons, because you did have inflammation that did not start at the rectum.

good luck
Posted 8/16/2018 2:51 PM (GMT 0)
The various oral mesalamine options release at different PH levels, and therefore tend to release more heavily in different parts of the colon. I believe Delzicol releases later and is better for left sided inflammation. That being said, Mesalamine enemas are guaranteed to medicate the left side. I do think that the 4gram/60ml enemas reach farther up than the foam. The best approach is to use both oral and rectal mesalamine. I've never tried Uceris foam, but it really does work well for some people.

I know there are a lot of horror stories about prednisone, but not everyone gets really bad side effects. The only thing it does to me is make me gain some weight (usually about 10 lbs over a 3 month tapering course). I still sleep fine and can function OK even with complex tasks at work. You don't know how you are going to react until you try it. It completely stops my inflammation in about 2 weeks, and that's when I start the taper. It's been a life saver for me, even in my most extreme flairs that put me in the hospital.
Posted 8/16/2018 4:51 PM (GMT 0)
I have a similar spot of inflammation as you, mine is focused on the end of the colon and the rectum. My doctor says rectal medication is the best to treat rectal inflammation (not surprising). He says oral medication can reach the rectum for treatment, but often at a fraction of effectiveness due to its extra path to the rectum compared to the rectal medication.

I was on pred for a few months and I never experienced one negative side effect. I was not a big fan of it before I went on it. While it didn't put me back into remission, it did help several of my symptoms. I told my GI before starting that I was only trying prednisone to see if it put me in remission, I was not willing to stay on longer term. Sure enough, it didn't put me in remission so I came off of it. I would be honest with your GI, but I would be willing to give it a try for a few months (you cannot just go on and off of it for days like other medications). if you get side affects, you come off of it. for some, it is a great treatment option.
Posted 8/16/2018 5:52 PM (GMT 0)
Thank you all for the replies and a bit of reassurance about prednisone. I did take a very short course once for acute back pain where you start tapering immediately. I was in the kitchen baking nonstop when taking pred and wanted a divorce when my husband burned some cinnamon buns! LOL At the time I thought I was, shall we say, temperamental due to pain.

Now pred seems worth a try before Humira. I am not afraid of the side effects but more that it won't work. From what I read here, and from friends with RA, Humira seems temporary, loses effectiveness over time.
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