feel like body shutting down please advise

even writing this is hard...

I have been diagnosed with indeterminate colitis, and am on 200mg azathioprine, 1000g sulfasalazine, and 2mg pred (tapering very slowly).

At the start of January I had a bit of a cold, but since then, I have had the following problems:

Complete tiredness, sleep maybe 10+ hours a day (usually 7 hours). Wake up feeling tired, and feel tired all day.

feeling cold, this is not all the time, I think it may happen when I don't eat anything for a while.

Loss of appetite, I've lost 5kg over the last month.

Night sweats, I noticed recently the sweat has an ammonia/urine smell to it.

Stomach isn't great either, somedays I only pass gas/mucus, a little liquid. The days when I don't pass much I feel worse I think. I wake up maybe 4 times a night to pass a little stool or mucus.

I am seeing doctor on Tuesday, but is there anything I can take/do till then. I do take calicoe vitamin D/calcium tablets. Doctor told me over phone a week ago to cut down from 200mg to 150mg of the aza. I think it did help for a couple of days, but the symptoms have come back.

Just out of curiousity, how is your colitis? Also, can you tell us how long you were on the pred, what dosages, and how you tapered?

ok, was checked for UTI, was clear.

I started Pred march last year 30/40mg or there abouts, i've been on a slow taper due to artritis in foot. Then doc added sulfasalazine in September. I have been tapering by 1mg every 2 weeks or so since about October where I would have been on 10mg.

the 'norm' for me is going bathroom 4-5 times in morning, then passing occasional mucus throughout the day, perhaps 3 or 4 times. Somedays very little mucus. I have been given a steroid enema to help with that.

Since beginning of January though stomach is a little bit over the place, and feeling off pressure/inflammation in rectum.

I think the night sweats are the steriods too. I get them on budesonide and enema combo.

The getting up at night is the flare.

I completely relate with added migraines. Hope you feel better soon.

With the amount of times per day you are still going to the bathroom, it seems you will need to change up your meds. You are almost off pred which obviously didn't get you in remission along with your other meds. Are you using the steriod enemas nightly? Those aren't good to use long term though.

Use the enemas, they were the key for me, all that rectal inflammation went away with them. If they are hard for you to use, a few tips:
Warm the enema before you use it. I either held the bottle under my arm or soaked it in a glass of warm water while I got ready for bed.
When you use it, if you need to, add more lube to the tip
Make sure you "burp" the bottle, you don't want to add any more air into your colon.
Then when you insert it, do your best to take slow, deep breaths and relax as much as possible.
They aren't fun, but once you see how much better you feel using them, you will realize they are worth the awkwardness and discomfort.
Good luck!

I too think test for anemia is a good idea. but don't do the oral iron - ask for and infusion if you can get it.

ok saw GI

He says the poor feeling is likely to be from a virus, I did catch a cold beginning of January. He has decreased the aza to 125mg.