Can't believe I am just finding this site...

Have you found the hydrocort enemas to be really effective? I hate them...I am so sore I cn barely stand to do it!
2
What do you think of the remicade treatments? - 40.0%
3
I don't get this yet - 60.0%

 
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oceanberryb
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/26/2008 11:09 AM (GMT -6)   
 
 
I am so happy to be here!  People try to understand but...."they think they know but they have no idea"!
 
I am in the middle of a major flare.  I have been so darn sick, and tired.  This blood will not stop.  My Doc(whom I love) is very anti-pred but it has been the only thing that has worked for me in the past.  He has prescribed entocort ec for me to get me back into remission but it is not working!  Anyone tried this steriod?
 
I am about to go into my "stash" of pred!  help me!
 
confused  

NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 2/26/2008 11:31 AM (GMT -6)   
oceanberryb,

Welcome to HealingWell, sorry that you are suffering like the rest of us, but hopefully someone will be along shortly to talk about entocort.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


Maureen4RU
Regular Member


Date Joined Dec 2007
Total Posts : 42
   Posted 2/26/2008 12:09 PM (GMT -6)   
Last year I had a major flare right before my wedding and my doctor had always put me on prednisone which has always worked for me. However, I didn't want to be put on prednisone right before my wedding because I HATE the side effects and the last thing I needed was to become an emotional rollercoaster and gain too much weight to fit into my dress (which always happens to me when I take it). So, my doctor put me on entocort and within the first 24 hours I was feeling so much better. It was my miracle drug! :) I stayed on it for 2 months and was still good once I went off of it. How long have you been on it? It worked very quickly for me but I have talked with others who it has taken longer to kick in for.

Maureen4RU
lived with UC for 7 years
Colozal (12 pills a day)
Entocort (3 pills a day)


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 2/26/2008 12:47 PM (GMT -6)   
I was on generic hydrocortisone e's for two weeks and I belive that is what helped w/my major flare, I had started prednisone a month and a half before that.....I don't know what the pred has done for me but the e's really helped.
Beth, 32
Major Flare Sept/Oct 07 ~ no blood since Dec 07 ~ almost normal bm
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday.  Potassium 100mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


oceanberryb
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/26/2008 2:02 PM (GMT -6)   
I have been on the entocort ec for about 9 days. Taking three a day. I was so over it this past Sat I went into my pred stash and have been takin 20mg of that a day. Today is the 4th day. I am all over the place! I didn't even call my doc and tell him I was doing this, he would not be pleased I am sure. He always wants to send me to the ER when the blood is not stopping and I just don't have time for that...I have missed enough work. Maybe I should do the nightly enemas also.....I am so over it

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/26/2008 4:53 PM (GMT -6)   
I was on entocort for an unfortunately long time. I ended up being one of the people who demonstrated it, like Pred, is not a good thing to take over a long period.

We can probably give you more information and better suggestions if you share some information about what part of your colon is involved and what drugs you've been on in the past and are on now.

Welcome to HealingWell, by the way.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Yujin
Regular Member


Date Joined Feb 2008
Total Posts : 55
   Posted 2/26/2008 5:33 PM (GMT -6)   
i took prednsione for a month... and my GI said it is not dangerous as long it will not exceed a month.. the only side effect i had was.. a Moon face... increase of apetite..(eating like a pig) and had a hard time to sleep...
Diagnosed with UC on 2007. Undergone Fistulotomy on 2005. Taking Generic Asacol 400mg 3X a day... "HEALTH IS WEALTH"


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 2/26/2008 5:53 PM (GMT -6)   
Hi and welcoem to HW.I've never tried Entocort,Pred is the only thing that has helped me get better.There are a lot of side effects that are common with it but it is a necessary evil for me.
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       
            http://www.myspace.com/martybuzz1<FONT]


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/27/2008 8:04 AM (GMT -6)   
Hi! Welcome to HW! I think many of us we super happy to find this forum - what a relief to have other who UNDERSTAND!!!

As for your pred situation - I really think you need to discuss with your doc. Pred is not a med to be used lightly. However, I have gone to my "stash" before too. It's not something I'd recommend. Your doc needs to be able to trust you to take his advice - just like you need to be able to trust your doc. I'm sure the two of you can work something out.

I would really suggest the enemas - steroid or 5ASAs. They do take some time to work - and a bit of getting used to. I don't remember any soreness from using Rowasa... Maybe another thing to talk to your doc about...
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


oceanberryb
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/27/2008 1:37 PM (GMT -6)   
I know. You are absolutely right. I do need to talk to my doc about the pred and I will. I was just desperate. It's been a long sick month! This is something new I have noticed...While I am sleeping..if I change positions then I feel this sense of urgency to use the bathroom and my "stomach" feels like it is churning! It is alwaful feeling. I find if I just lay there and "resist" the urge to go to the bathroom it will pass....sometimes it doesn't though. It's been making for some long sleeless nites.
 
 
Diagnosed- 2005
Curently taking- lialda, 20mg pred(tapering),folic acid, mercaptupurine, foli acid,multi-vitamins


oceanberryb
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/27/2008 1:41 PM (GMT -6)   
The part of my colon that is affected is the lower "ileum"?...I guess near the rectum..which explains a lot! LOL.  I am taking pred(20mg) and tapering..lialda,mercaptupurine(sp)?, folic acid, and some multi-vitamins....I was asacol for the first two years. Doc just switched me to lialda(less pills to take thank GOD)!  Also I have done the rowasa enemas and even had a couple rounds of the remicde treatments.  Yep, I've done it all folks........
 
 
Diagnosed- 2005
Curently taking- lialda, 20mg pred(tapering),folic acid, mercaptupurine, foli acid,multi-vitamins


eliztopp
Regular Member


Date Joined Feb 2008
Total Posts : 46
   Posted 2/27/2008 1:56 PM (GMT -6)   
oceanberryb- i have the same problem with sleeping! When i'm in a major flare any movement in bed and i feel as though my insides are going to fall out of my butt! How strange. Sometimes reisting the urge works but other i'm just so nervous that it might come out any way. I have found that magizines are my best friend in the bathroom, not only does it keep me there for a while, i don't relize that i'm sitting there for a long time and it keeps my mind off of everything thats going on "down there". Flares are always difficult, but it is always good to know you are not alone in your suffering. Keep your head up!
 
{[lizzielu]}
age 20, diagnosed december 2006
meds: Asacol 400mg 4 pills 3x a day; 6-mp 75mg MWF, 50mg SSTTH; 2x iron supplament; 250mg v-C; one-a-day; protonix; prednisone 25mg for one more week! (in the middle of a tapper, down from 40mg started 1/1/08)
low residue diet
Remicade????--pondering, next step


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/27/2008 2:09 PM (GMT -6)   
Ha! I've read whole novels in the bathroom when in flare. I seriously considered having tv cable run in there. No one can possibly understand what we deal with if they haven't been through it themselves, I don't think. Well, maybe moms who suffer through it with their children can.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


oceanberryb
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/27/2008 2:14 PM (GMT -6)   
OMG! lizzielu....I thought I was losing my mind! That is the perfect way to describe it! Like my insides are going to fall out of my butt! I am cracking up! Don't even talk about mags in the bathroom....Pleeease..all I need is a table and a telephone and I would never leave! My boyfriend calls it "my office" I spend so much time in there! Thanks for the laugh and the support. Also, something that has been soothing to me is laying a heating pad on my lower stomach...It's totally psychological but the heat calms my nerves.

ps what is a low residue diet?
 
 
Diagnosed-  Ulcerative colitis 2005
Curently taking- lialda, 20mg pred(tapering),folic acid, mercaptupurine, foli acid,multi-vitamins
Have had three colonoscopy's
 


eliztopp
Regular Member


Date Joined Feb 2008
Total Posts : 46
   Posted 2/29/2008 2:49 PM (GMT -6)   
oceanberryb- it is my pleasure to provide you with a little laugh! I'm glad you enjoyed it. As for the low residue diet, it is going really well. I really think that it has helped me alot. But it is kind of hard sometimes to deal with all that "i can't eat's..." as a college student i have found it extreamly difficult yet some how i mange to do it! I feel that being on a low residue diet with UC just makes since, i totally feel that mine is linked to food, and can tell if something doesn't agree with my system. I have been on it for over a year, adding things in when I started going into remission and was doing great until a bad flare dec. then i totally started over again. So i have been on a very strict low residue diet since then and now am doing great, but i'm nervous to start to add things becuase of the pred. taper (norm. this is when i start having problems around 20 or 15 mg.) But the hardest part with dealing with the low residue diet is explaining it to other people! I posted about both the low residue diet, and an annoyed rant about how much people were getting on my nervous asking about what i can and can't eat. If you have any more questions just let me know!
 
{[lizzielu]}
age 20, diagnosed december 2006
meds: Asacol 400mg 4 pills 3x a day; 6-mp 75mg MWF, 50mg SSTTH; 2x iron supplament; 250mg v-C; one-a-day; protonix; prednisone 25mg for one more week! (in the middle of a tapper, down from 40mg started 1/1/08)
low residue diet
Remicade????--pondering, next step

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