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can't sleep for more than 4 hours, going 8-10 times a day now

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Ulcerative Colitis
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Posted 3/15/2015 11:40 AM (GMT 0)
The pain and frequency has increased from 6 times a day to 8-9 times a day now, and I can barely sleep due to the pain. I can barely do anything productive with this severe pain. I use about 3 Rowasa enemas, 2 Canasas and 8 Aprisos already, and they seem to be making things worse.

I don't know what to do.. my surgery is still more than 2 weeks away. The pain is so painful! It's like way worse than before! It's all over my stomach and it wont go away!

OMG I can't sleep and I can't get rid of the pain when I am awake... I will not take steroids and would rather suffer through this than take steroids.

Post Edited (fightUC) : 3/15/2015 5:28:56 PM (GMT-6)

Posted 3/15/2015 12:38 PM (GMT 0)
I thought you were just having your first consult with a surgeon in 2 weeks. Has surgery now been scheduled? I know you are against steroids. Have you ever taken them? Not everyone gets horrible side effects and a short term (a couple months) course isn't going to do long term damage, but they will bring you some relief. There is also Uceris which is released in the colon so it's not systemic, but that can take 1-2 weeks before it helps.

I am so sorry that you are suffering so. I hope you can find some relief soon. You had a horrible experience with a doctor when you were a teenager, but you NEED the medical profession to guide you through this time of your life (in my opinion). Take a chance and trust them.

Perhaps someone else will have some natural suggestions for you, but it sounds like you are now in a severe flare so I don't know if there is anything besides pred that can help you right now.
Posted 3/15/2015 12:52 PM (GMT 0)
I feel you fightUC. When I was in my worst flare I was going over 20 times a day and the pain was unbearable. Constant pain. Didn't go away with food (not that I could eat anyways), bms, nothing. I was sleeping in 20 minute intervals basically because the pain would wake me up and then I couldn't get back to sleep. I found that sleeping in a recliner helped a tiny bit.

Why would you rather suffer than take steroids? When I was in that much pain I would have done anything. I wanted to take a kitchen knife and cut out my colon myself it hurt so much. Steroids helped me a little until I started remicade and then the remicade was a lifesaver.
Posted 3/15/2015 1:04 PM (GMT 0)
Get some steroid enemas, as 8-10 can easy turn into 15-20, if left untreated...
Posted 3/15/2015 1:10 PM (GMT 0)
so sorry you are in so much pain, I was dead against steriods for a long time and told doctor I would never take them but i would try the steriod enemas instead. They helped me alot and took them for three weeks straight and put me in remission. Absolutely no side effects. I also just recently took a course of prednisone (which I reluctantly tried) I had absolutely no side effects either, no weight gain, no sleepless nights and it did help alot also although I am flaring at the moment again.

I have proctosigmoidtitis to 30 cm so the enemas seem to help although I can never get over the hurdle, ever.

I would at least try the enemas they are not bad and I think they are easier to retain than the mesalamine ones.

I do hope you feel better with whatever decision you make.
Posted 3/15/2015 1:41 PM (GMT 0)
If you are in that much pain go to the ER. Although they will likely want to give you steroids. Maybe getting admitted will get your surgery pushed up. Why suffer when you don't have to??
Posted 3/15/2015 2:33 PM (GMT 0)
I really think the enemas would be a good option. Fewer, if any, side effects. And the healthier and more well-rested you are, the easier your recovery after surgery will be if you go that route, imo. Not to mention the travelling to and from Mayo clinic--I'm assuming you live in VA?
Posted 3/15/2015 5:30 PM (GMT 0)
Like 3 enemas a day? or are you alternating with the suppositories?

Are you on probiotics?

For sure call your doctor and see if maybe he can put you on a 10 day taper to 0 of steroid to get you to your appointment with somewhat less symptoms.

or....you could ask for Uceris and steroid enemas.

Antispasmodics a few times a day could help some of your discomfort.

Hope something helps you soon.

q
Posted 3/15/2015 8:46 PM (GMT 0)
You need to get a handle on your flare before considering surgery. It's unwise to refuse all useful meds and then go into a huge surgery terribly sick and compromised when something could have been done. My guess is that the docs would want to admit you and give IV steroids before doing surgery if you continue to get worse. I don't know your history with meds so I realize I may be missing something here. I'm really sorry you are suffering and completely sympathize. Consider the ER for fluids and dilaudid.
Posted 3/16/2015 2:44 PM (GMT 0)
Not sure why you're so against steroids especially since it would only be for a short period of time (I don't know if you've ever been on them or not but if not then you should try them for the short time you'd need them) or at least call your doc and see what all of your options are at this point...or you could smoke some mj which is great for the pain and for sleep too!
Posted 3/17/2015 5:14 AM (GMT 0)
It was 2 hours for me all night
Posted 3/17/2015 5:58 AM (GMT 0)
I don't understand why you would rather be in pain than take Prednisone? It saved my son, but clearly you have reasons. So sorry you aren't feeling well. I agree that maybe ER might move things along for you.
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