Symptoms?

If I were you I would call my doctor about worsening symptoms. It may be that the meds you are on are not the right ones for you. There are other options. Have you tried any rectal meds? If your inflammation is now down in the lower portion of your colon, they can really help. I would ask for those ASAP. Hang in there and read as much as you can about your med options before your next appointment.

It does sound like mesalamine alone is not enough. The options would be 1) to see if there is slow improvement over extended time, but no more than a year because untreated inflammation is a cancer risk. 2) see if enemas help, or 3) stronger med.

5x daily with some blood is not full management.

My history was very similar to yours. Diagnosed with pancolitis from the beginning and took apriso. It stopped working after exactly 12 months and went into a 6 week flare and I didn't respond as well to prednisone. I was then hospitalized and started remicade. Remicade worked really well and after a few small flares added imuran a year later. I've been in remission now for almost a year with this combo and feel great. Pancolitis can be very stubborn so I would definitely call your dr.

I go into remission mostly with Cortenemas and Rowasa. I see quick results from these 2.Now i take 2 Aprisos and 100 mg of 6mp[low dose for my weight] plus Acidopolous .Luckily most of my issues are in rectum so the enemas work great if theres any flare.

quincy said...
I would suggest you stop the oregano oil and fish oil initially. Call the doc and ask for rectal meds if they've not been part of your regimen.

Welcome to the forum!

q

ditto -

it is in some instances - but like ibuprofen, it can cause problems for folks with UC -

how long have you been using it ? did it improve your symptoms ? did you start using the other things mentioned at or about the same time ?

There are three classes of UC medications and it's good to know all of your options before you go to your next doctors appointment.

First is the anti-inflammatory mesalamine-based medications, and you're on the Apriso oral and Canasa suppository. Usually you want to max the first class of medications out (4.8 grams orally and 4 grams rectal-route) before going to the next class, so there's some logic in saying try a Rowasa enema (4 grams) as it goes much, much further than the Canasa suppository and is a much higher dose. You could also try another oral mesalamine, like Lialda or Delzicol as they are higher doses (4.8 grams). Those would all be small changes and whether they work or not, who knows. They could, they might not but you could always bring this up as a point of discussion with your doctor and see what the scope results say.

The second class of medications is immunomodulators (Imuran/azathioprine or 6MP) and they're usually added to the first when it's not enough. These are pills that are very slow working, taking 2-3 months to reach maximum effect. If you're not quite ready for biologics like remicade then you could suggest these immunomodulators first. Usually, you are on prednisone while you are waiting for these meds to work. You could potentially avoid biologics by trying these first.

The third class of medications is biologics (remicade, humira, simponi, entyvio). These are fairly fast working medications taking 6 weeks or less to show a response. I found remission thanks to remicade, the only medication to do this for me since getting UC. They all involve needs, Remicade and entyvio are IV-based and given by a nurse, perhaps those would be easier with a needle-phobia. The humira and simponi are self-injections, you'd have to do yourself, not sure whether that's possible with your needle-phobia.

There are three classes of UC medications and it's good to know all of your options before you go to your next doctors appointment.

Thank you so much for the info! Exactly what I was wondering. Dr. mentioned them but you know how that goes... in one ear and forgotten exact wording by the time I got home. Yes, would much rather try the 2nd set before the biologics. Dr. says he prefers the biologics because he thinks they work better.

Will ask about the Rowasa. Am cutting out all the supplements for now.

THANK YOU!

FlowersGal said...
So, iPoop, I see in your signature that you're in a minor flare? I actually just excited a flare. What symptoms are you having if you don't mind me asking? When treating UC the goal is to get everyone into what's known as a remission, meaning a total absence of UC symptoms and that can last 2 years, 5 years, 8 years or sonetimes longer (it varies). We all eventually flare. Flares are a consistent worsening of our symptoms. They include one or more of the following: increased frequency of bms, diarrhea, urgency, blood, pain, or mucus. Seeing blood return when wiping your bumm is usually the key indicator. We can have very mild flares that are easily beaten, we can have moderate flares that take mobths to beat, and we can have godzilla flares that land us in the hospital and take very strong meds to treat. My most recent flare was stubborn but mild with blood, and increases in urgency and frequency (4-5 bms a day). A much bigger flare a few years back was everything: blood, pain, diarrhea, near incontence like urgency, and 20+ bms a day. Sometimes I worry that I'm just over-reacting to my symptoms. I don't have a handle yet on what's bad and what's not. Right now, it all feels bad. If you're not yet in remission then it probably all is bad. My remission is 1 normal bm a day without urgency or any other signs of UC. I can even forget i have UC as it doesn't impact my day.

Also, how often do you do the Rowasa enema? Every night before falling asleep for 3-4 weeks and then it can often be tapered down.Do you try to hold it in all night, or for a certain length of time? Ideally hold it in 7-8 hours. The majority of the enena fluid is absorbed by your large intestine after 20 minutes.

Do you still have bathroom issues like frequency, urgency and pain? As you heal those should all disappear. Unfortunately not nearly as fast as you or I would like, it can take weeks or sonetimes a month or several months to completely heal.

I've been in a lot of pain today although it seems to be letting us some now, finally. I really hate this disease. UC does suck in the most awful way. Just try to treat it aggressively to bounce back as quick as possible. And you appreciate remission all the much more after fighting hard and for quite a while in order to achieve it.