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Ulcerative Colitis
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Posted 9/13/2011 12:31 AM (GMT 0)
Worsened Labor day weekend, so doc upped Pentasa from 4 daily to 8 daily. Also started VSL3. Bleeding increased as did pain so 9/8 he started me on 20 mg Prednisone daily. Been increasingly feeling better. For last 2 days had very soft lightly formed bms but boy did they hurt!

Today though, no bm but lots of strange sounds coming from my left side lower area. Sounds like my stomach is growling, but it is not my stomach! not really passing gas, but when I urinate, i do have alittle mucus leakage that contains small amounts of blood. Should I be worried that some creature is about to try to exit my body from the sound of things?
Posted 9/13/2011 7:42 AM (GMT 0)
No, it's a flare. Did you recently taper a dosage and then the doc upped it to 20?

Can't stress the rectal meds enough...He could have done that before upping the Pentasa.

q
Posted 9/13/2011 10:09 AM (GMT 0)
It's not clear whether you started on 9/8 40 mg. or 20 mg. daily of pred.

40 mg. can stop a flare dead in its tracks. 20 mg. to start, not so sure. In a sudden flare, my GP put me on 30 mg. and that even wasn't enough and I'm a mild to moderate case. I put myself on 40, then went down from there on a sensible taper. One form of taper is to drop from 40 mg. to 20 mg., then taper in smaller increments from there.

Quincy is right, 20 mg. is what you go up to if, for example, symptoms are recurring below 10 mg.

VSL 3, especially one packet, may not be doing much for you given the expense of it. They say you need up to four packs a day if you are flaring.
Posted 9/13/2011 2:35 PM (GMT 0)
ok this depresses me. I really thought/hoped I was getting better not on the brink of another flare. :(
Posted 9/13/2011 2:38 PM (GMT 0)
oops.. sorry! I just noticed that my signature line says 40 mg of prednisone. I am actally on 20mg daily.
Posted 9/13/2011 4:39 PM (GMT 0)
So what has been your pred schedule from the beginning?

The first year with UC can be a bit of a physical and emotional roller coaster until you and your GI learn what works. The symptoms create anxiety. You're not sure what is happening to your body.

I had one flare and a relapse my first year now I'm stable. Rectal enema and suppository medications like Rowasa and canasa really stabilized things for me. You've definitely got rectal inflammation if your BMs hurt. The rectal meds help heal the rectum where you're likely experiencing pain.
Posted 9/13/2011 9:57 PM (GMT 0)
When all this started in May, my doc started me with 20 mg Prednisone and 1 Pentasa 4 times daily. I tapered off of the Prednisone within 3 weeks. Never really returned to normal. Made my diet consists of rice, baked chicken, baked potatoes, fish, limited pasta, yogurt and peanut butter sandwiches. Have had a couple of plain hamburgers and fries though.

Immediately prior to Labor Day weekend, I saw lots of mucus some of which was bloody. Tues after Labor Day, pain, blood but still soft stool with vomiting- no diarrhea though. Went to doc that day and he doubled the Pentasa to 8 daily, added the vsl3. Started the 20 mg prednisone on Thursday. Blood began to decrease, but urgency is there.

Since Sunday, I have felt better, but then the rumbling started. Expected to have the usual soft painful bm Monday morning, but did not. Never did have one yesterday. Stuck with bland diet all day just in case.

This morning, I felt for sure that I would spend quite some time in the potty, but by lunchtime still no bm. I am not in any pain, just that dread of what is coming.

Through all of this, I have always felt that if I didn't have to go to the bathroom, I would feel fine. It's when I go and things begin to move that all heck breaks loose. At its worse, I push, pass and vomit.

Thanks for ya'll's patience, understanding and knowledge!
Posted 9/14/2011 12:28 AM (GMT 0)
My goodness. Don't know what the vomiting is about. The pain? I feel so bad for you. I do feel fine when I'm not going but the BMs can be white-knucklers during a flare. So when you are not going, you think you are better and you're not. The rectal pain is a reminder of the inflammation.

I think it's odd that he started you on 20 mg. Seems too low to stop the flaring dead in its tracks, but maybe your flare wasn't too bad and taht was reason enough for your GI to start you lower. Mine was enough to be hospitalized.
Posted 9/14/2011 6:02 PM (GMT 0)
So today, I have felt GREAT!! sort of interesting almost bm this morning finally, but afterwards, felt wonderful....until....

Lunchtime... rice and grilled chicken... ate about 4 bites then WHAM! the big D with vomiting. No blood... no pain... just d and v.

15 minutes later I feel GREAT!!! Any thoughts?

Oh and another question... can you actually take too much/many probiotics?
Posted 9/14/2011 10:22 PM (GMT 0)
The vomit signals you have something else going on besides UC. That's not UC. Something about the food?
Posted 9/15/2011 1:12 AM (GMT 0)
I have no idea! I don't eat anything anymore. I used to be a huge junk food junkie, but I haven't had good hardcore sweets since May! "Dessert" tends to be yogurt. Wooohooo!

After reading and researching, I was wondering if maybe I have C-diff. I have no idea if I was ever tested and I was put on Keflex early in my saga when the doc suspected Diverticulitis prior to my colonoscopy.

Do you think that maybe it's C-diff causing my problems? I have made an appointment with another GI specialist for a second opinion, but it is not for another 2 weeks. if C-diff is a real possibility, I will go see my general practitioner Friday morning and get tested.
Posted 9/17/2011 9:58 PM (GMT 0)
I am so sorry that you are dealing with so much pain right now. I have the talking stomach often. Usually either after a flare when I start eating "normal" again or during a flare.  I can feel the pain and the gurgling litterally moving through my intestines. My husband will curl up with me and rub my back during a flare up, but half the time he cant cause he is laughing to hard at the noises my stomach is making. Im glad that we can find the humor in it.... :-)
Posted 9/20/2011 2:20 AM (GMT 0)
For 3 days last week I felt wonderful, only to discover that when I went to the bathroom, I would suddenly and violently begin to vomit. It seems that on days that I am not passing blood, I vomit. So... I decided last Friday to change doctors and visit a Gastro Specialist that saved my boss' life a couple of years ago when he caught her Crohns.

He verified that the vomiting is not a part of UC. In fact, he is questioning whether I have UC, Crohns, or something all together different going on. He upped my Prednisone to 40 mg each morning; switched me from Pentasa to 3 Lialda tabs each morning; added Nexium each morning; and continued the VSL3 daily. He also scheduled me for an Endoscopy on Oct. 5.

Since Saturday, I have felt really well. For the last 2 days, I have had 1 glorious bm daily, but it really really hurt. There was no blood however... until today. Today, no bm, but I am passing some blood. This is all extremely frustrating, but I have hope that really soon, this doc will discover what exactly is going on with me.
Posted 9/26/2011 11:34 PM (GMT 0)
When the doc puts you on the right meds, it is a miracle! Sept 17th I switched from Pentasa to Lialda, had my prednisone upped to 40 mg, and started Nexium. This has been the best weekend since May! Passing stool like a champ 1 time a day with little to no blood and little pain. No vomitting. Eating more and a greater variety of food.

I am still going for an Endoscopy on 10/5 just to see if there is anything going on there, and I know that I will have to start tapering the Prednisone soon, but here is hoping that remission is in site!
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