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Ulcerative Colitis
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Posted 5/5/2014 1:45 PM (GMT 0)
You know when you think maybe you have turned that corner and things are getting a little better and then you are back to square one. Well that's me today.

Masses and masses of bloody mucousy diarhea this morning and can't keep off the toilet.

Have been only on my new meds (Colazide, Predfoam enema and pred 35mg) for nearly two weeks.

Why is it that things happen when you can't speak to your gi team. Its bank holiday Monday here and nobody is at work.

Need some advice please.

If blood is worse then is it safe to say that the predfoam enemas aren't helping after 11days and is it possible that they could be making things worse. Could they possibly be causing more irritation.

Do you think the change from Mezavant to colazal was the right move and have I given it enough time. I had a problem similar to this last year when the dr changed me onto pentasa. I was ok for a week then got increased bleeding. The reason I changed to colazide was because I saw whole tablets and thought it wasn't working. Not so sure now as I am not improving.

The oral pred isn't working is it if I am still seeing all this blood.

Should I stop the predfoam and use my mesalazine suppositories tonight until I speak to the IBD nurse tomorrow.

Yesterday I had no blood, 4 bms, so I was optimistic now I am absolutely deflated again.

Please can someone help me to at least try to make some sense out of whats happening today
Posted 5/5/2014 1:49 PM (GMT 0)
Oh that just sounds horrible, so sorry for the bad day. I always feel (or try to convince myself) when things are going better followed by a horrible day I write it off as maybe the ulcerations are actually healing and scabbing is occuring and during that bad day the scabs just happened to come off and caused me to bleed. It seems to be a trend for me anyways when I'm coming out of a flare,things get better followed by a bad day or two then things resume to getting better. I hope this your trend and things will look up soon if not by tomorrow.
Posted 5/5/2014 2:12 PM (GMT 0)
sorry you're having such a hard time MM :-(
Posted 5/5/2014 3:11 PM (GMT 0)
This happens to me a lot! It sucks!!! I think part of my problem is I'm still in denial. I'll have a few good days and think I'm "healed" and do things that I shouldn't. I'm having a problem with nuts/seeds. I love them and when I have a few good days I think it's okay to go back to them. I'm learning to respect the disease more and hopefully I will wisen up and take better care of myself!

Good luck.
Posted 5/5/2014 7:14 PM (GMT 0)
Thanks for your kind words.
Posted 5/5/2014 8:02 PM (GMT 0)
Martha, I'm sorry you are going thru this. :(
I don't know enough about your meds to give any advise, but it seems to me things are not working.
With asacol (mesalamine), I was to increase dosage when things got worst, and I would have to stick with the BRAT diet (banana-rice-apple-toast).

I see my GI next week for a follow up. I understand him saying I do not have UC, but I've got something! I hope he is ready to figure it out.

I hope you start doing better very soon.
Posted 5/5/2014 8:13 PM (GMT 0)
Thanks for your reply Coffeencake. I was wondering how you were doing. I hope you do get it figured out.

I am so depressed. I was so optimistic about basalaside and the predfoam enema. I am trying to decide whether to stop it now and use a suppository tonight. Its so hard to know what to do but if it was going to work I think I would of by now. I even think I should of stayed with mezavant.

I am going to ring my IBD nurse tomorrow.
Posted 5/5/2014 8:13 PM (GMT 0)
The road to remission is not a straight line. It can be a bad day here and there. You have to look back over a week or 2 weeks or 30 days and ask whether you are better over that time period, no change or worse.

Doctors will not be fast to change meds unless you are drastically worse (it doesn't sound like you are in the "drastic" category.)

Prednisone is good but not a cure-all immediately. Try to help it along by not eating things that you know have been problems in your past (you mentioned nuts and seeds). Yes I know what temptations are to eat things you miss and enjoy.

Mesalamine enemas worked well to stop my bleeding but as long as I kept eating problem foods my gut would bleed. The enemas were like a bandaid but I had to stop what was creating the bleeding (for me that was certain foods). Now that I am in remission I can eat food that caused problems before.

Hope this is just a bump in your road.
Posted 5/5/2014 9:51 PM (GMT 0)
Did you start out on 35mg prednisone or did you start higher and are in the process of a taper? I ask because every time I did a course of pred my GI started me out at 60mg.
Posted 5/5/2014 10:33 PM (GMT 0)
I Hope things start to turn around for you, sounds like your really having a difficult time all in all, I don't know enough about your meds to offer much more really...
Posted 5/5/2014 11:00 PM (GMT 0)
Sorry Mad Martha that you are feeling down about this. I do know how you feel, I would ask the nurse for the mesalamine enemas maybe that would help you. I would also continue the predfoam are you using it only at night or am and pm. When the doctor put me on cortifoam he had me do it in the am. and pm for 10 days then 21 days at night. Also try to lie down for 30 minutes after putting it in. The instructions on the cortifoam said to lay on your left side for 30 minutes, I am not sure about the predfoam.

If you get the mesalamine enemas you can do those in the morning and predfoam at night.

I hope you feel better soon.
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