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Posted 8/12/2013 12:48 PM (GMT 0)
Ah hang in there. I felt the same just recently in the hospital. It kind of hit me over the head since my symptoms had been manageable! I hope something helps you, buddy.
Posted 8/12/2013 12:55 PM (GMT 0)
hope the hosp stay does the trick - it did wonders for Joanna - good luck beat !
Posted 8/12/2013 1:36 PM (GMT 0)
I hope they fix you up with the meds, and you start to feel better soon.
Posted 8/12/2013 1:51 PM (GMT 0)
Best of luck!
Posted 8/12/2013 4:05 PM (GMT 0)
Huh? I thought I had replied, but I remember now: I was logged out after I posted and lost the post :-/

Best of luck, beatUC. I've been there, but you know how my story ended, so I won't depress you with that. Hope you manage to avoid what I couldn't.
Posted 8/12/2013 7:42 PM (GMT 0)
F...king disease...
Posted 8/12/2013 8:10 PM (GMT 0)
What are your options now, BeatUC?
Posted 8/12/2013 8:15 PM (GMT 0)
"F...king disease..."

ya, I think that pretty much says it -
Posted 8/12/2013 9:16 PM (GMT 0)
Beatuc...thinking about you. Hope everything is going okay for you. Lot of people pulling for you on this board.
B
Posted 8/13/2013 1:34 AM (GMT 0)
Best of luck, beatUC- glad to hear you are starting to feel relief. May this flare soon be history...
Posted 8/13/2013 2:16 AM (GMT 0)
Thinking about you! I've done the tpn routine before. Hang in there.
Posted 8/13/2013 1:12 PM (GMT 0)
not doing good at all and looking for advice.
The CATscan show bands of extremely active UC up high near where the colon meets the small intestine. Stool is gathering there getting stuck so to speak and then when I have a spasm nothing but blood comes out -lots of blood. 70mg of pred is doing nothing at all , and I feel like I'm giving birth everytime I go. I've never had anything quite like this, one of the dangers is perforation where stool is getting stuck and the blood loss, extreme pain and cramping is just killing me.
Has anyone else had impaction while in a flare like this?
Posted 8/13/2013 1:15 PM (GMT 0)
Oh BeatUC, I am so sorry. I was hoping you were going to tell us you're doing better and better...

I can't speak to your impaction question, sorry.

I have no scientific proof, but magnesium usually works wonders, what if they gave you liquid magnesium IV and oral, might that loosen the impacted stool and render it soft enough not to rupture your colon?

Sending you big hug!

Posted 8/13/2013 1:16 PM (GMT 0)
Inquire about cyclosporine. That is scary that the Pred isn't doing anything.
Posted 8/13/2013 1:26 PM (GMT 0)
I also have no answers but am thinking of you.

Sue
Posted 8/13/2013 2:11 PM (GMT 0)
Oh God what is going on last week it was Joanna and now beatuc. Scary how this disease can just screw things up this quickly.
I really hope the drugs kick in, inquire about cyclosporine and maybe IV antibiotics high dose as Rodsr said his mum had. Most important thing: if something is not working change tact! This disease can get bad real quickly and you must act fast; if pred isn't helping then try the other drugs.
Praying you pull outta this...
Posted 8/13/2013 2:22 PM (GMT 0)
BeatUC, I feel terribly terribly sorry for the pain you are going through.
I had been diagnosed with UC just 8 months ago and I can tell you how frustrated I'm daily at this early stage (i.e within this 8 months) having many many milestones to cross yet.

On seeing your post my eyes were with tears. I have no experience like the veterans we have but I will certainly send my prayers to you. May God give you enough strength.

I'm sure you will feel better soon.
Posted 8/13/2013 2:23 PM (GMT 0)
"not doing good at all and looking for advice.
The CATscan show bands of extremely active UC up high near where the colon meets the small intestine. Stool is gathering there getting stuck so to speak and then when I have a spasm nothing but blood comes out -lots of blood. 70mg of pred is doing nothing at all , and I feel like I'm giving birth everytime I go. I've never had anything quite like this, one of the dangers is perforation where stool is getting stuck and the blood loss, extreme pain and cramping is just killing me.
Has anyone else had impaction while in a flare like this?"

Why don't you try biologics. Remicade max dose. It should do something. If pred and remi don't work, I dunno anymore.

Taking surgery out of the equation cause you don't want it, I'm not sure. Is 70mg pred I.V. ? if it IV and it doesn't work, dude man you're in deep waters.
Posted 8/13/2013 2:39 PM (GMT 0)
Really wish something works for you. Best of luck.
Just so you know my son was on 120mg IV solumedrol=methyl pred, plus cyclosporine,had no effect.
Did not work for him,but we are all different.

Old Mike
Posted 8/13/2013 2:57 PM (GMT 0)
I hope they have you on NPO - nothing by mouth. Bowel rest can only help, especially with the impaction situation.

Have you had a surgical consult yet? I know you are anti surgery. I was in your shoes last year and anti surgery and very scared. I was forced to have a surgical consult in the ER and meeting the surgeon made me feel a lot better. I did pull through on Flagyl, IV steroids, bowel rest, and Remicade and was discharged without emergency surgery.

Thinking of you.
Posted 8/13/2013 3:28 PM (GMT 0)
I agree with the nothing more by mouth...

I hope that the inflammation lessens and that things get moving where the impaction is.

The butt birth poos are horrific...you could ask for an antispasmodic medication in your IV?

Healing thoughts and hugs sent your way!
q
Posted 8/13/2013 4:13 PM (GMT 0)
BeatUC,
Did you ask about getting cyclosporine? That stuff turned me around in less than 24 hours, it was amazing how quick it worked.
Posted 8/13/2013 6:06 PM (GMT 0)
BeatUC,
I still have flashbacks to what you are going through. Things that helped:
1. Switching from dilaudid to morphine. The dilaudid did not decrease the pain enough.
2. Interview a colorectal surgeon. You want a reliable Plan B, hopefully, you will never need it.
3. Ask about the cyclosporine. You are beyond the point where steroids can help.
4. Ask if your transfusions have been tested for Hepatitus B. Mine were not but I made sure my son's were.
5. Surround yourself with photos of things you love. Family, puppies, your favorite places.
6. Have someone who can advocate for you. At this point you cannot effectively advocate for yourself. You simply do not have the energy.

Try and keep your spirits up. You will get through this!
I noticed from a previous post that you like puppies. Here is a video of silly tricks I taught my dog. The dog in the video is not mine. We are still working on the play dead trick. :) My puppy is red and white with amber eyes. http://m.youtube.com/watch?feature=related&v=4a07gTcUiMw

My thoughts, and yes prayers, are with you every minute of the day.
Cynthia
Posted 8/13/2013 6:24 PM (GMT 0)
I can't get close to showing my appreciation for all your well wishes.
I am flat on my back with my laptop feeling life is not worth living right now and just wishing and hoping the horrendous pain stops.
You are a classy bunch here and I'm honored to be in your company.
May all of you continue to do better than I am right now and continue to help each other so much.
Blessings to you all.
Posted 8/13/2013 6:34 PM (GMT 0)
The pain will stop and you will go on to have a wonderful life. What pain meds and dosage are you on?
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