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Ulcerative Colitis
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Posted 7/22/2018 8:51 PM (GMT 0)
Hi my name is Anne , I was diagnosed with ulcerative colitis ( proctitis and some left sided) back in December I’ve been on Asacol since which I take 6 800mg tablets a day I also took cortiment for one month back in March due to a flare the Asacol work with the cortiment for about a month and then my symptoms began to return slowly but then I was flaring again in may I went back to the doctor in may to see what could be done and I was put back on the cortiment which only worked 1 week ☹️
I was told my uc was mild ,
I’m currently in hospital on iv hydrocortisone which I’ve been on for 3 days already with no improvement my symptoms are
. 2-3 large semi watery bowel movements ( blood etc) and some small mucus and blood maybe 4 times a day
. Gas pains and cramps before a bowel movement
. Fatigue

I’ve actually felt worse being in hospital with no improvement at all 😑
Help is much appreciated smile
Posted 7/22/2018 9:15 PM (GMT 0)
Oh I forgot to mention when I was diagnosed I was given a higher dosage of 9 800mg Asacol which was decreased after 2 weeks and I was symptom free for awhile but then flared again .
And in May it was also upped before I was given cortiment to see if it worked but it did nothing .
Posted 7/23/2018 12:21 AM (GMT 0)
What is the plan going forward? There are many treatment options available to you. If you can get somewhat under control with steroids as a bridge for a few months you could try a slower acting medication like Imuran or Entvio. Remicade seems to be the fastest acting biologic so that would likely be your best option if you don't respond to the steroids. Asacol alone isn't going to be enough for you.
Posted 7/23/2018 12:59 AM (GMT 0)
Did they do stool tests? That is essential at this point.

I am sorry you're struggling. There are a lot of options, but it's important to rule out pathogens before moving on. What dose of steroids are you on?
Posted 7/23/2018 7:30 AM (GMT 0)
they came around to see me today and they want a stool sample done , they gave me prednisolone foam enemas which I haven’t started yet and I think they’re going to put me on a different medication

Post Edited (45791Anne312) : 7/23/2018 3:38:35 AM (GMT-6)

Posted 7/23/2018 1:43 PM (GMT 0)
Good you're getting a stool test, i hope it is for infectious-causes. Clostridium difficile can mirror UC flare symptoms but would not respond to steroids (like the IV steroids you are on). In fact, steroids often make C diff worse. Ask and see what the stool test was for, and if they're not testing for infections then please insist that they order a stool test that does.

The recommendation for new UC patients is to take 4,800mgs of oral mesalamine and take a 4,000mg mesalamine retention enema. Your asacol 800mgs X 6 pills a day is 4,800-mgs, perfect! I do not see any mention of the enemas, ask your doctor about it.

For some of us, the mesalamines alone are not enough to control our UC. In that eventuality, then immunomodulators (azathioprine/imuran/6MP) and/or biologics (remicade/humira) are added to your existing medications. Biologics are the quicker working of the two, often showing results in 2-5 weeks. The immunomodulators can take 3-months to work, and aren't the best choice if you are currently hospitalized and on IV-steroids.

If you do not have an infection, yet still do not respond to IV steroids then ask about these rescue meds: double-dose remicade, cyclosporine, or tacrolimus. One of those should work!
Posted 7/23/2018 2:01 PM (GMT 0)
I'm surprised they admitted you to the hospital for those symptoms. I had far worse symptoms recently and didn't get admitted. I am also surprised they reduced your Asacol after only a couple weeks? Try the enemas, they will probably help. 2-3 BMs a day is not very many at all. That's how many I have while in remission!
Posted 7/23/2018 5:35 PM (GMT 0)
I, too, am surprised you're in hospital, but it's good stool testing is being done.

Can you not use mesalamine enemas?

Welcome to the forum,
q
Posted 7/23/2018 6:48 PM (GMT 0)
Thank you I know so many people have it much worse and I am lucky ,
I was given prednisolone foam enemas to use twice a day I haven’t started it yet though .
They never said anything about mesalamine enema , but will try the ones I’m given first .
Posted 7/23/2018 6:50 PM (GMT 0)
Are you in the U.S.? Just curious.
Posted 7/23/2018 7:26 PM (GMT 0)
No UK
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