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Ulcerative Colitis
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Posted 1/21/2014 5:23 PM (GMT 0)
Hi all.
So I just got discharged out of hospital earlier today and I'm just feeling hopeless.
Have been in flare since Christmas and my anaemia got so bad I had to go to the hosp for 2 blood transfusions. (Was in nearly 3 days)
Been on 60mg prednisolone for weeks so I'm not bleeding but having a few cramps/spasms and diarrhoea once a day. (My med Pentasa stopped working for me that's why I've been in flare)
I seen my gastro doc today and he said he wants to do a full colonoscopy... Which he knows I'm not happy about as when I got my first in October which only went a few inches into my bowel as I was in flare, it wasn't painful but I swore I never wanted another. He days he wants to know how much of my colon is affected by this which I can totally understand. I've been waiting around for proper medication, but it looks like I'm not getting anything until he does a colonoscopy? I'm annoyed and fed up, I do not want a colonoscopy but I just want some medication and try get on with my life.... I am afraid of sedation and hate IV's too so that won't help... I'm very stubborn and so so scared about this I have no idea what to do :'(
Posted 1/21/2014 5:28 PM (GMT 0)
*hugs* The best way to get the medicine you need is for them to see how much of the bowel is infected. Colonoscopies are horridly wretched, but it is better than over-medicating, IMO. When will you get your scope, do you know?

The sedation is only twilight sedation, so you are not going to be completely under. My first scope, I was joking and laughing with the nurses the whole time. My second, I was suffering some bad insomnia, so I was out.

I really hope you and your doc get this figured out soon. If I were you, I would try to make it clear to him that you are really wanting to get it under control ASAP, and see if he can't try you on something else in the meantime, especially if the scope is going to take a while to get done.
Posted 1/21/2014 5:41 PM (GMT 0)
As a person with UC you are going to have colonoscopies more than the rest of the world. I'm sorry you don't like them and that you are afraid of IVs etc. but those fears are not helping you. Perhaps you can get some targeted counseling about how to manage these anxieties.
Posted 1/21/2014 6:36 PM (GMT 0)
Thanks for the replies :) he said in the next 2-3 weeks... But I've to slowly decrease my pred and I'm worried my symptoms might get worse. It's mild right now as I'm only having mild cramps/spasms but I still want to get this under control ASAP.
Posted 1/21/2014 9:20 PM (GMT 0)
flares suck. bad flares suck bad. hope you taper w/o too much problem

unless another 5asa will work better (unless intolerance is involved, the seem more alike than different), the next meds are immune suppressant or one of the newer biologics. Some of these are pills or shots, but many biologics are IV infusion. Possably you can stick with 5asa if you add in enema/rowasa.

what med do you envision when you say "waiting around for proper medication" - did you have something in mind?

Post Edited (DBwithUC) : 1/22/2014 1:02:33 PM (GMT-7)

Posted 1/22/2014 8:00 PM (GMT 0)
when it comes to a colonoscopy, think about it this way.
Every time you have one, you get to see, if you are healing from what you are taking, or if you are getting worse.

Either way, you know. and have the chance to do something about it.

If my dr would let me, I'd have every test done possible, just to see if I'm getting better.

And that's the end goal. Get Better. Why.. mostly just to eat all the foods again (personal reason :D)

I miss food:(
Posted 1/23/2014 1:36 AM (GMT 0)
Sorry you are suffering. But you probably need to cowgirl up.
You have a new reality, and things probably won't play out the way you want.
Posted 1/23/2014 5:34 AM (GMT 0)
Yep, a new normal is coming your way. Ask the doc for something for your anxiety. Stubborn won't work well-managing this crummy disease requires flexibility and a can-do attitude. Hang in there!
Posted 1/23/2014 2:23 PM (GMT 0)
I am prescribed a double dose of Valium before any medical procedure.
I have a ridiculous needle phobia. Even the valium only "takes the edge off" and I still have to use my coping skills to get the actual needle in.

Once in push through the panic and they get the IV in... they add some extra morphine and I could care less! I loved my colonoscopy nap.

Was the best rest I had gotten in quite a while :D
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