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survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/20/2008 9:31 PM (GMT -7)   
how are you feeling? did the next humira shot help? Mine didn't seem to- I am still having a lot of pain and am now on cipro and flagyl. i just bought the scd book and am going to give it a shot- after xmas!
hope that you are feeling better.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/21/2008 12:23 AM (GMT -7)   
I don't really feel any better on it...I started 30 mg of prednisone a few days ago so that's helping but you know it's always 'when am I going to be better without this?'
I really hope the SCD stuff works for you. I'm so sorry your humira isn't working either...maybe they'll cure this for our Christmas present. I'll buy you coffee if they do :) And something spicy just for the heck of it.
I'd force all of us to tour the world after that heh.
Here is to a better year!! Let me know how everything works out. Maybe we'll get lucky and the humira will start working all of a sudden..
Thanks by the way. It's small things like this that make feel much better than my medicine ever does.

By the way..cipro and flagyl are antibiotics aren't they? Are they working any better?
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/21/2008 12:32 PM (GMT -7)   
cipro and flayl are antibiotics. i am having so much pain in my right side- it is unrelenting and my gi pretty much blows me off. i actually had to ask her to examine my abdomen as it was the 4th visit in 6 months where she had not laid a hand on me. she said _oh- you are tender, and started me on cipro and flagyl. in the meantime, i have a pain that is not letting up. i am literally bent over. if it is like this in 24-48 hours, i am going to the er

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/22/2008 7:39 PM (GMT -7)   
Oh good grief...that really isn't right!!! I can't stand hearing about doctors that won't see patients that really, REALLY need help! Please, please find someone to help you...it's just a fact that there are certain symptoms we may always have to deal with, but I don't believe there is an excuse for debilitating pain. If it gets to that then something has to be done, and I think very much your doctor and their staff should recognize that...let me know how things go...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/25/2008 6:28 PM (GMT -7)   
how are you feeling? any improvement? i have spend xmas eve and xmas day in bed- this is one of the worst flares that i can remember. i wonder if it is the holiday stress or what? i was so hopeful that the humira would work- i had 3 days of no symptoms at all, and then it all came back. that was 4-5 weeks ago, and have had 2 shots since with no improvement. i am ready to self dose with prednisone.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/25/2008 8:06 PM (GMT -7)   
I'm so sorry!!! I'm feeling better but that's because I started taking prednisone about a week ago. Otherwise it was all day in bed or the bathroom...
I have started taking the predisone by myself on many occasions, and my GI was perfectly all right with it.
I have to take my next shot this Saturday so we'll see how it goes...
I really, REALLY hope you find something to make you feel better or that the prednisone gives you some relief for a while. You shouldn't be in bed on Christmas...you should be enjoying the holidays! I hope your new year is much better.
Let me know how everything goes? Please, don't overdo it!
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/25/2008 9:19 PM (GMT -7)   
i think that if i am no better in the am i am starting pred. thanks for the support

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/25/2008 11:28 PM (GMT -7)   
I just want you to feel better...You shouldn't have to feel so low mentally and physically. I will be thinking a lot about you!!
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/26/2008 9:59 AM (GMT -7)   
today is better. i drank a lot of peppermint tea yesterday and went back on flagyl. today i am i a lot less pain and have more energy. thanks for your support. perhaps it was just the stress of the first xmas without my mom- she passed away this year.
thanks

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/26/2008 11:54 AM (GMT -7)   
I'm glad to hear you're getting some relief. I've never tried peppermint tea to calm things down. Does it work?
What dosage did you start yourself on prednisone? I took mine back up to 30 mg and am tapering down by 5 mg a week..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/26/2008 7:05 PM (GMT -7)   

the pred sounds about right. i went up to 40 once but that was too much for my little psyche....

the peppermint tea is wonderful. it may be pacebo effect, but i really think that it is soothing. get the kind without caffiene- celestial seasonings has a great one, and use a little honey in it if anyting.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/26/2008 8:13 PM (GMT -7)   
I'll have to look for it and try it then...
My gut is starting to act up again :(

I wish we'd start getting better eh..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/26/2008 10:40 PM (GMT -7)   
i was trying to read up on the scd and the low residue diet. they totally contradict one another. i decided to try and do my own version of the low residue diet and avoid wheat, nuts, seeds and sugary junk. today has been better than yesterday, and definitely better than xmas. i eill keep u posted

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/26/2008 11:33 PM (GMT -7)   
I was looking into the same thing actually...it's really difficult to find the right foods sometimes, but I guess we just have to go with trial and error based on loose guidelines set out by certain diets. I've cut out bread, refined sugar, and most dairy which seems to help, but today is just not a good day...
Did your GI recommend the low residue diet? Or the SCD? I'm actually wondering how many GI's will talk about the SCD...I think it's worth a shot at least. But you know how reluctant some doctors are and perhaps with good reason. I've heard of so many petty lawsuits.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/27/2008 10:14 AM (GMT -7)   
no- she did not seem to want to endorse any particular eating pattern- she just said stay away from salads. i wonder if it is a big flare time for a lot of people or just us

survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/27/2008 4:32 PM (GMT -7)   
cream of rice seems to be ok- no gluten, soothing, warm, try it

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/27/2008 7:03 PM (GMT -7)   
Cream of rice? That's not the same product/brand as cream of wheat is it?..do you put anything in it? I would imagine honey would be nice with something like that.
I took my humira shot tonight, have been taking imodium as needed(it seems to help), and am on 25 mg of prednisone until Monday which is when my next doctor's appointment is set.

How is all of your medication coming along so far? I still haven't had a chance to get peppermint tea, but I know there is chamomile lying around here somewhere so I imagine it will help with post-holiday stress and getting ready for this upcoming semester...I hope you're doing well tonight! I've been worried..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/28/2008 7:52 AM (GMT -7)   

i am a little better- the pain is manageable and the fatigue is better. i don't get to have my shot until tuesday. yes- cream of rice is right next to cream of wheat. i cheat and put brown sugar on in, but honey should work just as well. it also is nice as it is cold here.

thanks for your support- i hope that you are feeling better soon as well. here's to 2009- may it be a better year


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/28/2008 8:03 AM (GMT -7)   
Hi survivor49 and LMills, I hope you don't mind me popping in on your post. Survivor I like LMills will put myself on a short round of Pred when things get out of hand. I recently did a 10 day taper for a flare, it stopped it while I was on the Pred, but came back after about a week off the Pred. I had to go back on it and do a slower taper, but am feeling better now. I just wanted to tell you that I do a modified low res diet myself and that really helps. Some have success with the SCD or Maker's Diet, but I am starting to see that for some folks it isn't the right diet for everyone. I think if you can find a diet that works for YOU, you will see some improvement in your Crohns. Thats what I found with my low res diet. I do not eat any red meat at all. It is very hard on even the normal digestive tract to digest. I eat fish, turkey and chicken for my meats. And I try to keep everything easy to chew, easy to digest. I hope that helps a little and hope you both get feeling better soon. Good luck!

Gail *Nanners*
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/28/2008 9:15 AM (GMT -7)   
Survivor-I'm glad to hear you're seeing some improvement! :) Hopefully the shot will do something...I'm not sure if mine has or not. I feel basically the same, and it's difficult to tell the difference while I'm on the prednisone. I wish there were an easier way to tell eh..Are you going through any of it where things seem like they're returning to a pretty normal state i.e. semi-formed stools, increased appetite, etc. and then all of those disappear for a few hours? It seems to be fluctuating a lot and it's so confusing..

Nanners-Any input would be wonderful!! Do you ever eat bread, sugar, dairy, etc.? I'm having a hard time refusing the bread, but I don't think it's been enough time to really tell if it's making a difference or not so I'm trying to stick with it for another couple of months..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/28/2008 9:28 PM (GMT -7)   
you are right- it is a constant up and down with these symptoms lately. Nanners, thanks for any input- i am trying to do a low residue as well. if you grind nuts to a powder or paste, are they considered low residue? i was craving waldorf salad and peeled some apples, chopped them very finely and added mayo, a SMALL amt of Finely diced celery and some walnut "powder". it tastes great- waiting to see what happens............

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/29/2008 9:14 AM (GMT -7)   
Yes I eat bread. I also think if you grind the nuts up to paste you should be fine too. Also, I avoid all peels on fruits or veggies and that seems to help. Lucky you survivor49 to be able to eat salads, thats one thing I can't do too much of. I am lactose intolerant, but I am able to eat cheese and a little ice cream. But when you are flaring it is generally good to avoid it for awhile.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/29/2008 9:47 AM (GMT -7)   
*sigh* I had a low night yesterday. It felt like food poisoning almost since I was so nauseated(I am never nauseous) I nearly vomited and my body got rid of everything until my BM's were cloudy liquid, mostly clear. All I had for the day was an ensure which never gives me problems, a chicken breast cooked with olive oil which I have been eating every day, and then pancakes made with almond flour...the almond flour is the only suspect culprit. I'm just wondering if I introduced it into my system too soon OR if I am simply unable to tolerate nuts...which I would hate terribly since I absolutely love peanut butter..

I'm going in to see my GI at 3:15 so I'm trying to think of different things to ask him about like the status on humira at this point, if there any other medications and/or supplements I can take, whether or not I should go on a liquid diet, etc.

I hope you guys are doing all right..I'm hoping it really is just the season.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/29/2008 11:56 AM (GMT -7)   
perhaps it was an old fashioned gi virus! keep me posted- there are a lot of people out there with this virus, maybe you picked it up and it has nothing to do with crphn's

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/29/2008 2:26 PM (GMT -7)   
I wonder...it only made me very ill for one night though so..I haven't had a stomach virus in such a long time that I don't really remember how long they last. I had one about 3 or 4 years ago and it was maybe(?) a week. Have you come down with anything similar or someone close to you? I'm really out of the loop concerning every day illness right now it's embarrassing :(
I certainly hope it isn't the Crohn's, but it may have just been that I ate something I shouldn't have...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."

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