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Newly diagnosed with Pancolitis

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Ulcerative Colitis
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Posted 12/29/2018 7:52 PM (GMT 0)
Hello. I’ve recently been diagnosed with Pan Colitis at 23 after having constant bloody diahirra and then a colonoscopy. It’s been really hard dealing with this. I was started just on prednisone steroids (40mg a day) for a few weeks. Then my doctor started me on Azathioprine (AZT 100mg) and Humira while I tapper off steroids. It’s been a little over two weeks on AZT and Humira and I’m not seeing much improvement (other than the bleeding stopped while on just steroids). I’m still going to the bathroom with diarrhea 6-8 times during the day, plus I’m up about every 2 hours at night. People keep saying it can take weeks to months to see improvement. Is this true? This is all new to me and no where online do people talk about how long it took them to get to remission. I just want to go back to normal life since I’m on leave from work but starting to feel like this isn’t working. Could anyone share your story of your diagnosis and your journey to remission and how long it took? Any stories or tips (that aren’t commonly found) for UC for me would be greatly appreciated!

Post Edited (Tdg14) : 12/29/2018 1:34:17 PM (GMT-7)

Posted 12/29/2018 8:40 PM (GMT 0)
Hi I was diagnosed with pancolitis a few years ago, it started suddenly and i thought it was food poisoning in the beginning until i started seeing blood after 2 weeks. I was very weak at the time of diagnostis as food was passing through me and physical exertion gave me fever. The hospital gave me mesalazine tablets and it took 8 weeks to reach remission but i noticed improvement within a couple of days. That being said the improvement was not linear - more like 2 steps forward and one step backwards. I'm surprised at your doctor's choice of medication as those drugs are not usually first line treatments and moreover it's more usual to try one by itself then add or swap to another one if it's not effective. So I'm not sure why they would do that? Azathioprine takes 6-12 weeks to work and they should monitor your blood levels as it may be necessary to adjust the dose. Living with colitis is not easy but i found i get more resilient with time. I also worked with a psychologist and that really helped me to feel less stressed - stress definitely makes my symptoms worse. I have been a lurker on this forum for a long time before i posted anything here and have found it a wealth of comfort and information. Good luck and know that you're not alone smile
Posted 12/29/2018 9:59 PM (GMT 0)
Welcome to the forum but sorry to hear you suffer from awful bowel problems like we do.

Yes, it can take a month, multiple months or longer to achieve a remission. It sucks. Be patient.

Humira takes a miminimum of 4 to 6-weeks to start working, and longer to give a full remission. Azathioprine takes a minimum of 3-months to work. There's no easy-button, no instant-gratification, and absolutely no fast-pass to this. Rather, it takes time.

Pred should hold you over until those other meds work. Pred works lightening fast.
Posted 12/30/2018 12:14 AM (GMT 0)
Welcome..
Sorry to hear about your diagnosis of pancolitis and that you are now suffering with it. As far as treatment and later remission goes. It can take a long while to reach total remission. But in the mean time hopefully the meds you have started will start to lesson the symptoms some. If one med doesn't work there are others to try. Or if one works and later stops than it is time to move on to another. It will take time for you and your health care team to figure out what works for you and what doesn't. There's a lot of trial and error to the process. Regretfully there is no one size fits all when it comes to treating this disease.
There is hope.
Hang in there it's bound to get better with time.
Posted 12/30/2018 5:16 AM (GMT 0)
I had a nasty pancolitis flare about 15 months ago. It can take a while for the meds you mentioned to kick in. I ended up having to move to weekly Humira after about 9 months on the typical UC dose. It’s made a world of difference. Hang in there and try to be patient.
Posted 12/31/2018 10:03 PM (GMT 0)
Azathioprine takes about 2-3 months just to start working and then about 6 months to reach full effectiveness. So, it isn't doing anything yet. Humira takes a couple months. It is too early to taper off of the steroids. You might ask your doctor about transitioning from prednisone to Uceris (or Entocort).
Posted 1/1/2019 5:54 AM (GMT 0)
Not much to add here, all great comments above.

However, if you're male, please acquaint yourself with the associated risks of AZA given your age. Otherwise, please disregard my contribution here...

Best of luck to you
Posted 1/3/2019 12:39 AM (GMT 0)
hello,

I was 24 at diagnosis. It sucks and its really hard. It does take time, for me it felt like 3 steps forward 2 back for a while. I hope you get relief soon.

All my best,
Beth
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