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Ulcerative Colitis
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Posted 2/22/2012 11:39 PM (GMT 0)
Hi everyone,

  I have been reading through these forums for a few weeks now trying to figure out what's been going on with me so I finally decided to join and see if maybe there was someone that might could help me out (calm me down).  I'll try to make it quick.  Had D/blood/feeling like i still had to go/bloating/gas.. etc about 5 weeks ago.  Waited two weeks then went to the doc.  Got put on cipro/flagyl.  Sucked but my fever went away but was still having same d/blood/etc etc.  Had CT scan and showed there was still imflammation.  Doc put me on pred and lialda.  I couldn't fill the lialda because of the price.  Pred he has me at 40mg 7 days, 30mg 7 days, then 20mg 7 days then done.  Today marks the one week mark of being on Pred.  I go to the restroom a lot less and only bleed when I go during the night.  My problem is I am having SEVERE cramping at night/overnight/early morning.  I was under the impression Pred was some wonder drug that would knock that out?  I can't sleep because of it, and have horrible night sweats.  During the day I'm better, but I have bad anxiety and the pred makes it worse.  Was not filling the Lialda bad?  I thought that was just a maintenance drug?  Another huge thing I am worried about is my weight.  I lost 15lbs and am very underweight to start with.  The past week I have been eating a TON but only put on like 2 pounds.  So my main questions are:  Why am I still having severe cramping.  Why am I suddenly cravvvving sugar (always hated sweets, wouldn't even eat my own bday cake but crave it now).  And my last question, why am I not putting on weight as much as I am eating?  I know my colon is still screwed up I guess so am I just not digesting anything right?  Sorry this was so long but it's been over a month since I've been able to work and I only leave the house to get food or go to the doc.  Any help is GREATLY appreciated.

Posted 2/22/2012 11:58 PM (GMT 0)
I don't have answers for all your questions but for your question on the lialda it's probably important that you try to find a way to get it or another similar drug. I couldn't afford it either since it was going to cost me over 400 a month after insurance, which when you only make double that a month is crazy. I called my GI and she put me on samples of it, which I was very thankful for at the time. Unfortunately I ended up being allergic to all mesalamines so I never ended up having to figure out how to pay for it long term. If you can't get samples then ask if there is another option that could potentially be cheaper.
Posted 2/23/2012 1:09 AM (GMT 0)
Pred can be a wonderful drug but does have lots of nasty side effects as you are experiencing. Everyone is different with how long it will take to feel better. The Lialda is also a great med to be on. When I am flaring I take 4 pills a day and when I'm not I take 2 a day. The pred is what is making you eat like crazy but many people do have trouble getting weight on. I think when your flaring its just harder for your body to get the nutrients it needs and things just go right through you.

Please look at the sticky titled uc resources at the top of the forum. It will have a link to a lialda assistance program.
Posted 2/23/2012 1:13 AM (GMT 0)
Thanks to the both of you for the replies. I have applied for the assistance program and should have some by Friday. I just am worried about why I am cramping so bad. It really only happens overnight while I'm trying to sleep and early morning. During the day I'm okay and eat a lot. I guess I'll try to not eat as it gets closer to bedtime except maybe a greek yogurt. Now that I'm tapered down to 30mg of Pred I take 2 pills at 6am/1030am/300pm. I figure the further away from sleep time the better maybe? I really hope this goes away I feel like I'm just wasting my life away on the couch.
Posted 2/23/2012 2:01 AM (GMT 0)
Machina 12,

There is a drug called Mesacol 1.2g available in India for a fraction of cost compared to Asacol ( or any other mesalamine family )

If you think Mesalamine works for you, find a source to get it from India.

Good Luck
Posted 2/23/2012 2:02 AM (GMT 0)
Eventually you will gain weight on pred and it may be more than you want. So try to ease up on the eating. I had those cravings too. Unbelievable. It's the pred.
Posted 2/23/2012 2:05 AM (GMT 0)
If you take your pred in the morning, you could be cramping as it's starting to leave your system. Alternatively, prednisone gives me leg cramps, no reason why it wouldn't do the same to your gut. Try to fill the lialda if you can. 5-ASAs greatly reduce your cancer risk.
Posted 2/23/2012 3:09 AM (GMT 0)
I should have the Lialda by Friday.  I'm hoping that will help maybe?  I'm just having trouble separating if what I'm feeling is from the colon/prednisone/or what else it could be?  I understand the severe cramping, but not sure why it's at night.  I don't understand why during the day when I'm not cramping (except for gas cramps) I go to the mall and after about 10 min, I start feeling queezy and nauseous and start sweating.  I used to be so active and I can barely get a shower without feeling completely exhausted afterwards.  Maybe it's from being so inactive for a month?  Is this normal with a bad flare-up?  I know the anxiousness/short-breathness is from the Prednisone as I previously mentioned I have bad anxiety anyways. 
Posted 2/23/2012 3:50 PM (GMT 0)
The exhaustion is normal for a bad flare-up and is not just from being inactive for a month.
Posted 2/23/2012 4:20 PM (GMT 0)
     Take a deep breath.  I feel your anxiety.  My GI doctor never had me on Lialda, so I am not familiar with the drug.  I suffered with UP (proctitis) for twelve years prior to surgery.  The maintenance drug I took was a generic form of Colazal (Balsalizide...forgive me if spelling is wrong).

     Prednisone gave me terrible anxiety and insomnia.  My doctor said it was fine to take the entire dosage in the morning following breakfast, so that is what I did and it was a bit helpful as far as the insomnia was concerned.

     Try eating a low fiber diet, and if possible, spread your meals out during the course of the day, i.e...six small meals daily.  Stay away from caffeine and anything with high fructose corn syrup.  You'd be surprised at how many drinks and foods contain it.

     Ask your family physician (as my GI would not prescribe it) for something to take to ease your anxiety.  My doctor prescribed the lowest dosage possible of xanax (generic form).

     Has your GI doctor mentioned rectal meds?  Rowasa works very well but it can be expensive.  I was on Rowasa and then switched to Cort enemas and Canasa suppositories.

     If you find you are eating a lot but losing weight, have your blood sugar tested.  Prednisone can increase your blood glucose levels.  It gave me type 2 diabetes while on it.  It can also increase your blood pressure.  My doctor called it the best/worse drug...just beware.

     Welcome to the forum and I hope you find relief soon.  This is a horrible disease and I found that all of us in here respond differently to different meds.  Hope you find the med that works for you and you can stay off the prednisone after your taper.  Very important NOT to stop it cold turkey because it could have devastating results.

Posted 2/23/2012 5:15 PM (GMT 0)
Are you still on the cipro/flagyl? Usually this is for in infection like C. diff. I was once put on it when they suspected an infection--I didn't have one--just a bad flare. It gave me cramps. If you are off of those, I would definately call your doctor to discuss it. Hang in there.
Posted 2/23/2012 8:33 PM (GMT 0)
Well I've come to terms that I'm not going crazy and it''s just the Prednisone making me wired and moody.  I'm just upset/depressed because I want to get back to work and doing normal things.  Everyone says Prednisone knocks out the symptoms right away and I'm still weak/exhausted and have cramps and diarrhea with occasional blood.  I'm just so worried after a week and a half of Pred why I'm still having symptoms.  Could it be a polyp/cancer?  Wouldn't that have shown up on the CT Scan?  No weight gain still and eating everrrything!   Oh and I meant to add, I see one of ya'll said something about taking xanax for sleep?  I am prescribed .5mg of klonopin but ever since I started with this flare up.. it seems I can't feel any effect of the klonopin!   Could it be my body is not absorbing it because of my colon?
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