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Posted 6/9/2012 8:47 PM (GMT 0)
I have had colitis for about 7 years.  Rode the wave and tried not to complain. A short while ago I was hospitalized with c diff. I was a few days fom starting Remicade.  Had to cancel being so sick.

I have been home for 2 weeks today and the diarrea has eased up some, but the nausea and lack of appetite had me lose 20 pounds in those 2 weeks.  I just want to sleep and I am so weak as to have a hard tome holding the phone for more than a minute.  The doc wanted to put me on pred, but I am fearful to go on that(never been) in this condition.

Will the pred take the nausea away?    I have lived in fear of going on it from reading here, how hard it is in many cases to get off.  Do you think I can start the Remi being as weak as I am ?  Calling the doc monday to talk things over with him, but wanted some input from some who may have gone through this.

Thanks for any input, as I am at the end of my rope here.

Posted 6/9/2012 8:52 PM (GMT 0)
Prednisone is a useful medication and ONLY SOMETIMES causes bad side effects. I, for one, have enjoyed every minute I've been on pred. So there.

On the other hand, is the c.diff really cleared? I would want to be sure about that before starting a steroid med.

I'm sorry you've had such a rough illness and I hope you feel better soon.
Posted 6/9/2012 8:58 PM (GMT 0)
The test for c diff came back negative a week ago, yes.
Posted 6/9/2012 9:27 PM (GMT 0)
Prednisone only sometimes causes bad side effects???
uh, not what I read on here.

Joylu..all you can do is try it, make sure you're on a PPI med to help prevent high stomach acid.

Why aren't you on a much better probiotic?

How about possibly going on the steroid topicals such as Entocort and the enemas? YOu'll know soon enough if you get any side effects.

Hope something has you feeling better soon.

q
Posted 6/9/2012 10:02 PM (GMT 0)
Quincy, I am also now taking Ultimate Flora along with the Align. Started that when I got home a couple weeks ago.

What is a PPI med?
Posted 6/9/2012 11:05 PM (GMT 0)
When I was first diagnosed, I was very underweight, exhausted, very anemic, in the bathroom all the time and unable to brush my teeth without gagging. I could barely eat or drink anything without feeling sick (except Arby's roast beef sandwiches- weird). I started taking Prednisone and, within 3 days, I had an appetite and more energy than I had had in months. It improved my symptoms and I did a normal taper without complications. It really was a miracle drug. My second round of Prednisone did not go as smoothly but I was able to get off of it eventually.

I hate being on Prednisone and would only take it again if I got really sick. It sounds like you are there. Yes, it can cause some nasty side-effects and some people do become dependent on the medication. However, it could also be what you need to get the inflammation under control.

Talk things over with your dr. If s/he thinks Remicade can help you on its own, go for it. If they really push the Prednisone, you probably need it. If this is the dr that has been treating you all along and they have never put you on it before, they are probably very conscious of the potential side-effects and are not approaching it lightly. Should you decide to try it, make sure you take a calcium supplement and avoid sick people.
Posted 6/9/2012 11:54 PM (GMT 0)
I agree with kazbern- all my pred exoeriences have been 100x better than the flaring UC itself- and most of the time getting off hasnt been difficult. I certainly agree that pred should be avoided if possible but its a useful drug to stop a flare in its tracks while you buy time for other things to kick in and/or for such things to keep you in remission as the pred is tapered.

Post Edited (Probiotic) : 6/9/2012 5:57:35 PM (GMT-6)

Posted 6/10/2012 1:09 AM (GMT 0)

Joylu said...
I have had colitis for about 7 years. Rode the wave and tried not to complain. A short while ago I was hospitalized with c diff. I was a few days fom starting Remicade. Had to cancel being so sick.
I have been home for 2 weeks today and the diarrea has eased up some, but the nausea and lack of appetite had me lose 20 pounds in those 2 weeks. I just want to sleep and I am so weak as to have a hard tome holding the phone for more than a minute. The doc wanted to put me on pred, but I am fearful to go on that(never been) in this condition.

Will the pred take the nausea away? I have lived in fear of going on it from reading here, how hard it is in many cases to get off. Do you think I can start the Remi being as weak as I am ? Calling the doc monday to talk things over with him, but wanted some input from some who may have gone through this.

Thanks for any input, as I am at the end of my rope here.

Joylu, sorry your going through a tough time, have you considered making dietary changes? I myself have found the SCD diet to be useful, while others on here suggest the paleo diet. You should get your blood work done to check for deficiencies like b12, vitamin d, calcium and iron, maybe get some supplements so you can eat least hold a phone up.

Prednisone is the hardest drug out there, but considering your frail state, i wouldn't recommend it unless absolutely necessary. It can do more damage than its worth:

adrenal fatigue, osteoporosis, joint pain, hormone fluctuation, extreme hunger, insomnia, these are just some of the symptoms I experienced, besides adrenal fatigue and osteo. If you do go on it, speed up the healing process by looking into some supplements maybe?
Posted 6/10/2012 3:05 AM (GMT 0)
Prednisone is not a nice drug but it works very well to reduce the inflammation quickly. It SHOULD NOT be used long term. I had steroid refractory uc which means i would only respond to high doses of prednisone like 60mg or higher. Obviously I couldn't stay on that so the pred was a no go for me. Your UC sounds like mine was. It had a mind of its own and nothing I took or any diet I tried was going to make it go away. Oh and I got UC after I quit smoking too. I had j pouch surgery and it turned out to be a blessing in disguise. Now I'm done with UC for good. I hope you can find something that works for you. A short run of prednisone might give you some relief and you can go from there. Good luck.
Posted 6/10/2012 7:03 PM (GMT 0)
Joylu...a PPI is a proton pump inhibitor helps to lower the production of acid in the stomach.
Pred increases the production of acid in the stomach.

Good you're on another probiotic....while they're expensive, at times I take 2. There's also a higher billion * products Renew Life makes. I've not seen it in the stores, only online. Another member was taking it, can't remember who.

q
Posted 6/10/2012 8:12 PM (GMT 0)

stereofidelic89 said...

Joylu said...
I have had colitis for about 7 years. Rode the wave and tried not to complain. A short while ago I was hospitalized with c diff. I was a few days fom starting Remicade. Had to cancel being so sick.
I have been home for 2 weeks today and the diarrea has eased up some, but the nausea and lack of appetite had me lose 20 pounds in those 2 weeks. I just want to sleep and I am so weak as to have a hard tome holding the phone for more than a minute. The doc wanted to put me on pred, but I am fearful to go on that(never been) in this condition.

Will the pred take the nausea away? I have lived in fear of going on it from reading here, how hard it is in many cases to get off. Do you think I can start the Remi being as weak as I am ? Calling the doc monday to talk things over with him, but wanted some input from some who may have gone through this.

Thanks for any input, as I am at the end of my rope here.


Prednisone is the hardest drug out there, but considering your frail state, i wouldn't recommend it unless absolutely necessary. It can do more damage than its worth:

Your frail state is probably the best indicator that steroids are necessary. It is going to be really hard for your body to heal without some serious help. I did much better on Prednisone when I was really sick and weak than when I was just sort of sick. It can also help you to gain back some of the weight that you lost- some people gain a lot but I just put on 10 lbs (I had lost 25).
Posted 6/10/2012 8:43 PM (GMT 0)
Joylu,

I feel your pain, Ulcerative Colitis for 20 years, also got it from quitting smoking. On all the meds you are taking for the first 3 years, decided to smoke again and symptoms pretty much disappeared except for the urgency and the occasional flare-up once/twice a year. Smoking really does help keep it at bay. Every time I tried to quit smoking I would go into full blown colitis and end up lighting up again.

Don't run out and buy a pack just yet. As it relieves the UC symptoms your now killing yourself in other ways as we all know. Well time to stop smoking after having done it for 40+ years of my life and I did just that. I went into the hospital for the JPouch Surgery a full smoker and came out a non-smoker!

That was done on 4/23 and I am now wearing a temporary illeostomy bag until I go back in for the reversal in mid to late July. Have you thought about this surgery? I am also cigarette free without colitis! It's a major surgery and has to be done in 2 steps, this 1st portion has been hell for me but others have feared it better than I have, but as hard as this portion of the surgery is I know I have made the right choice and there is light at the end of the tunnel.

Sorry you had the c-diff, that is a horrible thing to get and you will probably be proned to it now and having UC on top of it is just a nightmare.

Kim
Posted 6/11/2012 3:13 AM (GMT 0)
[quote]

Your frail state is probably the best indicator that steroids are necessary. It is going to be really hard for your body to heal without some serious help. I did much better on Prednisone when I was really sick and weak than when I was just sort of sick. It can also help you to gain back some of the weight that you lost- some people gain a lot but I just put on 10 lbs (I had lost 25).

I 2nd this! Feel better!!!
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