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60mg of Prednisone and my next option?

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Posted 5/26/2011 1:16 PM (GMT 0)
I got discharged from the hospital yesterday after getting hospitalized for 5 days and was given Solomedrol for 4 days every 6 hours.
Two days ago the doctors switched me over to oral 60mg of prednisone a day.

I was still going 7-8 times a day. Blood D, a lot of cramping and pain.

I got home yesterday afternoon and at night I was in A LOT of pain again. It's like I'm going crazy over the pain. I'm in so much pain that I just start rolling on my bed side to side as I'm withstanding the pain.

The Ds I can take but the PAIN is just so excruciatingly bad. The CT showed pancolitis when I was hospitalized and I'm home again.
I'm just afraid that I even with the 60mg of Prednisone I won't even get my pain or D down.

This is my 4th time being on Prednisone and each time I was on it for less than 2 months or 2 months.

I'm also on Canasa and Pentasa. I wasn't in this much pain even though I didn't get any pain killer medications b/c I refused.

Also when I'm in a lot of pain, I get very nauseated. ugh. the worst feeling in the world.

And as for the next options, my primary care physician does not want me on Methotrexate although I can't tolerate Remicade, 6mp or Imuran. I guess I should make an appointment and see him if it gets worse in the next 1-2 days?

Then I thought of my diet, maybe the meatball pasta that I had right before discharge was bad so maybe they caused it? The meatballs were good though, yummm.

I'm trying out Avocados, Bananas, Coconut Milk, Pineapple juice(not from concentrate) and some turkey as my main diet as of now.

Luckily another GI specialist whom I met at the hospital is not against alternative meds like LDN so if I can just handle my pain and D while tapering down to 20mg of prednisone, I have a shot i guess.

And I WANT TO GAIN WEIGHT SO BADLY!
Does anyone actually recommend Ensure drinks or do you think it's just a hype?
Posted 5/26/2011 1:21 PM (GMT 0)
A better way to put on weight is to use Benecalorie. Each 1oz portion has 300 calories. It's odorless and tasteless and can be added to food or beverages. The other benefit is that it won't add bulk, hence it won't keep you in the bathroom. You can google it and read more about it. I think it's a healthier, less junky, method of putting on weight as compared to Ensure. Best of luck for your improving health!

Sue
Posted 5/26/2011 3:35 PM (GMT 0)

Hi there!

I just came back from Mayo Clinic and my procitis is now pancolitis!  I'm in th same boat...starting Pred 40mg for 14 days. Fortunately my symptoms are very mild!  I think it's the combination of the Busdesonide suppositories and LDN transdermal 4.5mg.

I was in ALOT of pain before the Busdesonide and LDN.  I even tried an Ensure diet. Ensure just upsetted my digestive system more.  There's ingrediants in it that don't do well with me.  I too will love to gain weight. I'm down to 112 from 130lbs and I'm 5ft 2in. Maybe the Pred will help with the weight gain.  The only thing keeping my pant up is the extra padding from the diapers I'm wearing!

I'll be trying the Pred/LDN combo. I heard the LDN does help and it's OK to take both. I checked with several pharamcist and the LDN and IBD yahoogroup site.


Posted 5/26/2011 3:51 PM (GMT 0)
You might have made it worse by not being careful about what you eat.
Did that pasta have tomato sauce? That would tear me up when I was flaring. I'm kind of surprised they would serve that to a GI patient at all!
Juices can also be pretty harsh. Some people have trouble with bananas, but they are good to eat for the potassium when you are on prednisone.
It's trial an error, an individual thing. I hope you can find something good to eat, I know it must be hard if you were used to not worrying about it.

I don't know about the supplements, but my father does better when he uses Ensure (he is elderly and has little appetite so needs the extra calories). The vitamins and fiber might be harsh, that also might be trial and error, finding what brand is easiest on your gut. My first GI did not want me taking any vitamins, something about the binders in them.

I hope it gets under control soon. That pain can be blinding! Be careful.
Posted 5/26/2011 4:37 PM (GMT 0)
First of all, I'm so happy that members of this forum are so nice and helpful :D
I wanna say Thank You.

I guess everyone's different on the best way to gain weight.

I've decided to see my main GI doc tomorrow right away(but he's against alternative treatments like LDN) and ask him about giving it a shot with transdermal LDN first and perhaps for some antiemedic meds and pain meds just for a week.

Very glad to hear that some are doing well on the LDN. It gives me hope!
Peace&Harmony, thanks for letting me know that I can take LDN while being on prednisone.

And yes the pasta that i had contained tomato sauce in it, yikes. It was real good though lol. Haven't had meatball pasta for SO LONG.

Anyways, should really watch out for what I eat.

Today I had some boiled eggs, Dole's pineapple juice(diluted) and avocados.
Digestion and appetite are worse when I'm in pain and flare but I must try to eat.

One thing that I question all the time is that whenever I have a bad flare up(but was never in full remission since two years ago) and get my blood work done, every vital test comes out to be normal. It's a good thing but this makes my main G.I. think that I'm coping with the disease well even though my symptoms are severe IMO. And I'm down about 50lbs since the diagnosis(three years ago)

I had 5 bad flares before and my red blood cell count, white blood cell count and even potassium lvl etc, are ALL normal except the C reactive protein lvl, of course.

Does anyone tolerate bacon well while flaring? it has some preservatives added but no sugar.
Or should I just stay with simple diet for now?
Posted 5/26/2011 8:21 PM (GMT 0)
I am quite shocked that you are not taking anything for pain relief... Why is it that you have chosen not to take anything?

When I go through a tough flare I am usually on morphine at the hospital. I know exactly what you mean with the side to side rolling in your bed thing; I do that and also lay on my stomach and just kick my legs for however long the "pain-surge" lasts.

Don't you think that having your mind off of the pain for a little bit might be beneficial to your body?

I too have taken Ensure when I get stuck at the hospital, I have been given the drink from nurses if I ask for it, so if you can handle it... I mean if it just doesn't add more volume to your diarrhea and consequently to the pain your experiencing. I wouldn't just knock one back though, I would try and sip here, sip there technique until you realize if its going to agree with you or not. I don't think its going to help you gain weight if that's why you're taking it, putting on fat and muscle is going to take months...

Just thought I would add my .02, good luck with your endeavours!
Posted 5/26/2011 11:29 PM (GMT 0)
I read your comment about your blood work being normal despite massive flare's and was surprised because i was told the exact same thing today. I am in the worst flare i have ever been in, im going over 20 times a day each time with what appears to be massive amounts of blood. This has been going on for almost over a month now and i was scared that i was losing wayyyy too much blood. I had been eating fairly well until about 2 weeks ago then my appetite just dropped completley. I usually weigh around 215 and im down to about 180ish now, and yet somehow my blood-work is coming back completely normal. Has anyone else experienced this and know why it happens?
Posted 5/27/2011 2:36 AM (GMT 0)
Pain medication such as percocet can definitely help with the D as it has a constipating effect. Why don't you want to take it? I'm so sorry you're in such pain, but try taking the medication. It's the only thing that ever helps me when I'm doubled up as you say you are. It also gives you some strength to cope with this terrible disease. You can actually get a short time to rest.

I do hope this bad time is over quickly for you.
Posted 5/27/2011 3:05 AM (GMT 0)
Yea, I was being ignorant and unwise :(
I didn't know that it had such effect lol.

I really do need a good night sleep without pain. And especially in the morning I need to be painless.
Posted 5/27/2011 6:54 AM (GMT 0)

JamesonM said...
I am quite shocked that you are not taking anything for pain relief... Why is it that you have chosen not to take anything?

When I go through a tough flare I am usually on morphine at the hospital.

I had that for shoulder surgery - hated it and went home instead of more. I have never been given pain relief for UC. I had to have a stroke to get dilaudid.

For big flares I always take VSL3, fish, yogurt, nuts. Last time even 100mg Prednisone failed so I got Librax and Mebeverine to calm the gut muscles and that worked after suffering for over a month and losing 40 lbs of muscle.
Posted 5/27/2011 4:49 PM (GMT 0)
I also never took pain medicine. The spasms were terribly painful, but for me they only lasted a minute or so and then I would be OK, albeit really worn out. It would bother me to simply mask the pain, I think. I also needed to function, to work.
Posted 5/27/2011 6:01 PM (GMT 0)
Hmm it almost seems like people think of the pain medication as "masking" the pain, whereas the way I see, it is giving my mind and body a break while I am trying to recover my colon. Without the constant draining of the pain I am better able to feel more positive about my recovery and focus on what I need to be doing in order to make a smooth recovery. I totally understand where people are coming from, but when the nurse comes by and asks the,
"Out of 10, and 10 being the worst pain you've ever experienced, which number would you consider your pain right now?"
And I say anything over 7, there's no way I am going to refuse pain medication and read a fishing book while I relax, try and eat a little bit of jello and maybe catch a few zzz's.
Posted 5/28/2011 11:05 AM (GMT 0)
A quick suggestion re: diet - I'm in a flare at the mo myself (milder than what you're going through though), and have found bananas made things even worse. As Peety said, some people can't tolerate them well. I have also found probiotic yoghurts (with the live cultures) have helped reduce gassiness and bloating for me - I have most of a large pot each lunchtime. Also I seem to digest and tolerate fish much better than red meat or even chicken - I've had good days on salmon, tuna, or prawns.
Obviously I can only say this works for me, but it does seem to have reduced urgency a bit and "activity" in my bowel during the day to a degree.
Hope you feel better soon.
Posted 5/28/2011 3:03 PM (GMT 0)
Ensure gave me gas when I was flaring, which was awful. I use a low residue diet while flaring badly. Might be a good thing for you to try. Also, do you feel better after your prednisone dose and then worse over night? If that's the case you might fare better doing a split dose schedule on the pred. But, of course, ask your doctor.
Posted 5/28/2011 4:01 PM (GMT 0)
Thank you guys. I hope things get better soon.
I think Ensure gives me gas and some bloating so I stopped drinking it a few days ago although it does taste good lol.
Probably all the additives like corn syrup etc. are causing it.

I've been taking prednisone 20mg x 3 a day, in the morning afternoon and night. Pain seems to worsen at night and in the morning.

And yep. I'm on low residue diet but I want to have some blueberries(my fav fruit and smoothie). But it's got some fiber and seeds so probably not a good idea.

I'm really considering the possibility of going on Humira if I can get my hands on them since I'm not on any other immunosuppressants. And LDN hopefully sooner.
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