HealingWell
Search Close Search
☰

Dumb question? But need help.

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/29/2009 10:11 PM (GMT 0)
Hi everyone, me again. Sorry to be such a pain, in the BUM of all places. But my flare up has gotten worse as the day has went on. I have took my 20 mg of pred and the only thing it has done is made me hungry. I am gonna be truthful and admit that i tried to be like the ostrich and hide my head in the sand and pretend like this desease was nothing. I went into a quick remission after being diag. so I didn't do much research or really asked for help. Just played the super hero thing. Now I know this is a BIG deal and is with me for life. I am calling my GI Dr in the morning, but I have no idea what to ask her or what is the next step. I do agree with you all that responded that she tapered me to quick. Last week when i was on 30 mg i had no UC problems at all. Just was having a bit of a problem ajusting to pred. I am diabetic and it caused my sugar to go up, then was put on to much sugar med and it went to low. my sugar is up some, but would rather it be a little high then low. How long can you stay on pred before getting hooked. I have family members that say this drug can be bad for you and you can become dependent. and how often can you use it. I would appreciate any help, any questions to ask Dr., what should be next. Most importantly I need a e-mail friend, someone to just talk to that has this same problem. Seems I am the only one on both sides of my family that has this. Please help!!! thanks!!!!
Posted 3/29/2009 10:41 PM (GMT 0)
Pred. dependency is controversial. If you get dependent, at least you still have something that works for you. Careful on the taper though. 5 mg is usually the weekly decrease. Yes, lots of side affects. My daughter had most of them. To get her off of that drug, she had blood work, and then got on 6mp. It takes awhile to kick in, so while it is starts working, you can slowly taper the Pred..
You can ask the doc about other drugs. Consider the enemas of either Cortafoam or Rowasa, and the anti inflammatory of Asacol or Colazal. Lots of drug possibilities to supplement the Steroids. Hunt on this site, and you will find many of the answers you seek.
Good luck
Posted 3/29/2009 10:46 PM (GMT 0)
I'm no expert yet but ever since I was diagnosed back in November I feel like I know more then half the GI's in the counrty because of my intense research which I think is beneficial for everyone who has this disease because it's so individualized. 

What I did when I was first diagnosed was obvioulsy do the research but also asked a lot people who had the disease questions.  I felt like my GI was obvioulsy intelligent but the real answers come from the ones who currently live with the disease. 

Also, I think it's up to your GI to be asking the questions to decide what the best treatment is for you.

I hope this helps, one thing to keep in mind is that this disease is really a trial and error, you have to try things out to see if they work only becuase what works for some wont work for others.

Good Luck!

Posted 3/29/2009 11:44 PM (GMT 0)
This disease doesn't mean one thing...
this disease is very different for every single individual and I know that sounds like complete BS and doesn't allow for any closure but think of it this way:
you either flare up mildly once every 20 years or have one intense flare up that leads to the full removal of your colon! the good news is that you can be anywhere in between so just aim for not flaring up constantly - join a gym, COMPLETELY change your diet, visit a naturpathic doctor (when ever possible), do your research, know your body and learn with time, and take your meds!

THIS IS NOT A JOKE 80% of us will get better overtime but 20% of us will get worse... much worse, to the point of living with a J-Pouch worse! but that 20% is the rare few that don't take it seriously and don't take their medication/make life changes!!!

Your immune system is attacking your colon thinking that it is the enemy but it learns NOT to if you do what's right... otherwise the attacks will get worse and worse!

I believe that there will be a great treatement for this disease within 20 years so DO NOT give up! don't freak out, just live your life as it should be lived... you're not sick with UC, UC is sick with you! together we can beat this thing but alone we're lost and confused
Posted 3/30/2009 12:01 AM (GMT 0)
Are you on any other meds besides prednisone? If not, you really should be.

I recommend you go to the Crohn's and Colitis Foundation of America website (www.ccfa.org) and start reading there to learn more about UC.
Posted 3/30/2009 12:06 AM (GMT 0)
thanks for the advice and words of encouragement. I have been reading all day about this and I have learned a great deal. I do feel like maybe I should go back up to 30 mg of pred, i had no complications here and it was so nice just to have a few days of normalcy. I am on colazal 3 3x a day 750 mg and canasa, it was working, then just stopped. I also have inflamation in my blood. My GI Dr. says she is not worried about this, but my PCP & Cardio are. Me and my Family are concerned about it also. Why would I have inflamation in my bLood? Tks again & take care, Angel
Posted 3/30/2009 12:13 AM (GMT 0)

Hi,

One has to be on predisone for a long time before you become dependant.  Slow tapering is the secret, and nothing to be taken lightly.  This is a serious drug, and it does suppress your adrenials that is why you need to taper slowly.  Do you have an endocrinologist for your diabetis?  They also are experts on glands and predisone so you could get all your questions answered safely there.  I would defineately discuss this with my GI and also ask about a maintenence drug i.e. asacol to hopefully keep you in remission when you are off the prednisone.

All the best,

Julia

Posted 3/30/2009 12:45 AM (GMT 0)
When you suggest completely change your diet what does that consist of...MollyMcb

Scorpion24 said...
This disease doesn't mean one thing...
this disease is very different for every single individual and I know that sounds like complete BS and doesn't allow for any closure but think of it this way:
you either flare up mildly once every 20 years or have one intense flare up that leads to the full removal of your colon! the good news is that you can be anywhere in between so just aim for not flaring up constantly - join a gym, COMPLETELY change your diet, visit a naturpathic doctor (when ever possible), do your research, know your body and learn with time, and take your meds!

THIS IS NOT A JOKE 80% of us will get better overtime but 20% of us will get worse... much worse, to the point of living with a J-Pouch worse! but that 20% is the rare few that don't take it seriously and don't take their medication/make life changes!!!

Your immune system is attacking your colon thinking that it is the enemy but it learns NOT to if you do what's right... otherwise the attacks will get worse and worse!

I believe that there will be a great treatement for this disease within 20 years so DO NOT give up! don't freak out, just live your life as it should be lived... you're not sick with UC, UC is sick with you! together we can beat this thing but alone we're lost and confused

Posted 3/30/2009 1:35 AM (GMT 0)
Well MollyMcb that's up to you to find out, everyone is unique... you know how some people with our condition don't care for their diet and keep eating out - hot wings, BK, Taco Bell, you name it!
When you change your diet you must increase the amount of fruits and veggies (apples and bananas are amazing), lean meats (little to no animal fats), drink more water, stop eating those God awful snacks (chips, cookies) etc.

This isn't very complicated, if dairy bothers you then stick to lactose free foods and so on; you will see how great it feels to have a good diet.

To completely change your diet is to completely change your eating habits - the harder you try the better it is.
Posted 3/30/2009 1:40 AM (GMT 0)
Thank you for the insight Scorpion24, I do try to watch it, but think I will watch it even more.  The question about Prednisone is always so tricky.  Seems like the higher doses you seem to get better but them decreasing seems to put so many in a flare.  I know for years I stayed on 5 mg for like 5 years.  Here again, everybody's response to things are so different

Post Edited (mollymcbutter) : 3/29/2009 7:44:09 PM (GMT-6)

Posted 3/30/2009 1:43 AM (GMT 0)
You are more than welcome, best of luck.
Posted 3/30/2009 1:49 AM (GMT 0)
elephantlover, I asked the question about diet because I was seeing how you are concerned about your sugar levels raising on Prednisone, which I guess Prednisone after long periods of time can raise blood sugar, but wondered if diet then has to be monitored more closely. I am on Prednisone right now as well tapering each week from 40, 30 20, and now 10, I am having a really bad day myself today and wonder if it has to do with tapering down also, mine seems more gassy in the way of pain. I see the Dr. tomorrow and am going to ask about the Prednisone and the decrease. Hope you are on your way to feeling better soon
Posted 3/30/2009 12:10 PM (GMT 0)
Elephantlover, most times when you flare with your Uc your white blood count raises because it is battling the inflammation in your colon. So the "inflammation in your blood" means you are flaring and the prednisone may not be working well enough to get the inflammation down. GI's see this all the time and unless the numbers are totally outrageous most times GI's won't bat an eyelash over elevated levels.
✚ New Topic ✚ Reply