I am desperate for sleep

Are you any other meds besides Pred and dicyclomine?

And yes, doctors shouldn't have a problem prescribing a sleep medication but unless you get your flare under control it might not be the best thing unless you wear Depends to bed.

Pred should be taken first thing in the morning when you get up (I've never been a fan of splitting my pred doses in two as some do) it's trial and error with the sleep meds and OTC ones are pretty weak compared to RX and even with those there's no guarantee that it'll help but it's worth a try...you should be discussing this with your GI.

speak to your doc
if you are having a BM every 45 minutes that is more than 30 in 24 hours
you belong in the hospital in such a case because you are probably not hydrated and are likely deficient in potassium

please make a signature in "my profile" so we can see what is going on
you might need IV steroids and than a taper to oral with the addition of an immune modulator like imuran
(i cant tel cuz i dont know your meds or history)
you can also try IV steroids and if no improvement within three days than add remicade and do a quick steroid taper. (There are alternatives to this)
generally if no response within 3 days of IV steroids they have failed you that flare

You've exactly described my lifestyle for the last ~3 months or so before I had surgery. Not saying surgery is right for you, just that I've been there and you are describing severe ulcerative colitis. You don't need a sleep aid, you need a different treatment protocol. You'll end up in the hospital if you keep going like this without doing something different to treat your colitis.

I see that you are on humira
and you have been hospitalized quite recently
has the humira helped you at all?
if not maybe go to the hospital and try a rescue of cyclosporine
I am not sure if there is a way to eliminate the humira from your body effectively but sometimes they will not do a cyclosporine if you are on biologics
call your GI asap
you are clearly in bad shape and need to be watched closely

I recently figured out my sleep problem after over six months of similar circumstances. I would go to bed at 9-10 and then be up at 12, 2, 4 and 6 every night like clockwork, despite being more-or-less fine during the day (thanks to Remicade). In-between the bathroom visits I would be lying in bed awake, farting and rolling around because my gut was gurgling and uncomfortable. This might sound cliche but I ended up simply eliminating alcohol and changing to a diet of eggs, salmon, tuna, light salads, white rice, potatoes and chicken. I do also eat other things in small amounts but these are the staples. Anyway, I have slept every night for at least 6-7 hours since making the switch (its been about 2 weeks).

As mentioned by others, taking Prednisone is going to ruin your sleep irrespective of anything else you might be doing to help yourself. You are going to have to stop doing this if you want to see any improvement at all. Take your steroids in the morning.

I understand that everyone is different but if you can spot any similarities with your lifestyle I encourage you to try what I tried. It has been real game changer for me.

Take Tylenol 3. It worked wonders for me! Normally if I have to be up at 7, I take it at 8 the night before. Sometimes I took it later. Never had any side effects. Just don't plan on driving after you take it. Also, don't drink alcohol on it.

MarsRover said...
I am needing some advice on sleep. It is getting ridiculous. It seems every 45 minutes to an hour I have to get up to use the bathroom and usually the pain is so bad I have to take my medication and steroids (which thus wires me from sleeping anyway). I have tried not eating within a few hours of bed time and even some OTC sleep medications and melatonin but it still persists. I can be in bed for 12 hours but only get 3 hours elapsed of actual sleep. Its taking both a physical and mental toll on my body.

Early morning (post 4 am) is the worst-if I don't take my first round of prednisone and dicyclomine at around the time I will be in pain and forced to run to that bathroom every 30 minutes until I take it (which of course the pred prevents me from falling asleep). I usually end up crashing or being terribly drained by mid afternoon. Does anyone have any suggestions on how to eliminate or reduce the this problem? Do you think a doctor would/could/should prescribe me some actual sleep medication?

Hi MarsRover

Sounds like a severe/acute flare up if you're going through the night. I can only echo that you may need to go to hospital. I didn't think I needed to, but I think we tend to underestimate how bad things are. I had Zoplicone in hospital and have had some prescribed now I'm out. I intend to take it every third night to avoid habit forming as I reduce on the Pred. I will have a OTC Nytol otherwise. Sleep is important for healing and I was going crazy on only 2 hours per night. It is only a short term option, but needed when things are bad.

Really hope that things start to improve - I am starting to turn a corner with remicade I think.
Tough disease for us all. Best wishes, Catherine