waiting for meds to kick in...

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
User avatar
tpsprings
Little Blue Penguin
Little Blue Penguin
Posts: 26
Joined: Fri Jan 18, 2013 11:12 pm

waiting for meds to kick in...

Post by tpsprings »

Always waiting for something right!? When is the GF/DF diet going to work...not yet. Now it's been 4 days on 9mg of Budisone. NOT working yet. I know I am being impatient, but I also know you can all relate. I waited for weeks to see the doctor and hoped that there would be a magical light at the end of that tunnel....silly me!

Sooooooo I have things to do where there are other humans around me this weekend. That means that I have to go without eating in order to seem "normal". Otherwise my stomach makes this crazy noise like I have old re-runs of Godzilla playing in my gut followed by that "bubbling" noise that the office water cooler makes. The Joys of Freaky Bowel Disease.
jgivens
Gentoo Penguin
Gentoo Penguin
Posts: 315
Joined: Thu Dec 27, 2012 1:35 pm
Location: Kalamazoo, MI

Post by jgivens »

I remember thinking that I'd feel better after the colonoscopy and when I didn't, I said to my husband, "I've had to campaign for this colonoscopy for so long, I thought it would make a difference once I had it done--how stupid is that? Nothing has changed, I am still having diarrhea and now I have to wait for the biopsies to come back!"

I think everything with this disease is about waiting and patience and taking three steps forward and two back. Soooo annoying. I have no experience with Budisone so can not speak to that, but from reading what other members have written, like everything else, it takes a while and it is very individual.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
User avatar
coryhub
Gentoo Penguin
Gentoo Penguin
Posts: 439
Joined: Tue Jul 12, 2011 11:49 am
Location: Ontario, Canada

Post by coryhub »

Dear TPSpring,
Sorry that the Budisone has not clicked in yet. It happened quickly for me. You must be in the midst of a bad flare up. When I am like that I practically have to live off, chicken broths, mashed potatoes, & bananas.
Hope things turn around soon for you,
Cory
:razz: :magicwand:
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
User avatar
birdlover3
Adélie Penguin
Adélie Penguin
Posts: 202
Joined: Mon Dec 31, 2012 2:04 pm
Location: Illinois

Post by birdlover3 »

The Budesonide worked the day I started it, but I'm sure we are all different. Hang in there.....
Diagnosed with Collagenous Colitis November 2012.
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

Hi Tpsprings (are you in Tarpon Springs btw?_

Entocort kicked in for me in 3-4 days but since I've been on the forum there are some that took longer for Entocort to kick in. GF kicked in for me after 6-8 weeks. Gurgling after each meal took unbeliveably a full year to stop. You really learn patience with this disease. Anything you can do for stress reduction can help. Keep foods very simple early on.

Regards, Brandy
User avatar
DebE13
Rockhopper Penguin
Rockhopper Penguin
Posts: 1657
Joined: Sun Nov 27, 2011 5:32 am
Location: Wisconsin

Post by DebE13 »

I've been on entocort for about a year now and seem to be the slow poke of the bunch. I've been experimenting with tapering practically since I started it. It took 3-4 days before I noticed an improvement but I never experienced "normal." It has decreased the number of trips to the bathroom so I've kind of settled into accepting that as its as good as it may be for me. I finally tapered to 3mg every other day for about three weeks then got the flu. Everything went downhill from there. I took 9mg yesterday and 6mg today. It has slowed the D a bit but causes abdominal pain which I rarely have so I really want to be off of it.

Leah has given great advise and I had hoped to experience C as my signal to taper but it has never happened. To me, it feels like everything is constricted & crampy but the D is still there. It's very uncomfortable. Don't give up yet since you just started, everyone has a different timeframe. I've had CC for six years and a lifetime of damage so it would make sense that I may not be among some of the luckier ones who notice almost immediate improvements. Hang in there!
User avatar
Gloria
King Penguin
King Penguin
Posts: 4767
Joined: Sat Jul 07, 2007 8:19 am
Location: Illinois

Post by Gloria »

It took 3-4 weeks for me to get back to normal the first time I went on Entocort. Each time I've gone off of it and had to resume taking it again, it's taken longer and I've needed to eliminate more foods before I could see Normans.

This last time when I resumed it, I had to add 1/2 Imodium every day in order to see Norman.

Deb, if you don't get constipated, you might consider a small dose of Imodium. Unlike Entocort, it leaves your system fairly soon after you stop taking it, and it's pretty reasonably priced.

Gloria
You never know what you can do until you have to do it.
User avatar
tpsprings
Little Blue Penguin
Little Blue Penguin
Posts: 26
Joined: Fri Jan 18, 2013 11:12 pm

Post by tpsprings »

It sounds like the majority of us respond well and quickly to Entocort.

Deb, you sound like you are still dealing with this on a day to day basis. You have really learned patients!!!! I commend you on that. I have had this for some time, but now knowing that I can potentially fix it makes me almost angry that it's not working like it should. I guess it's reassuring to know that I am not the only one that may have to wait and see.

Does Budesone and Entocort work the same?
User avatar
tex
Site Admin
Site Admin
Posts: 35068
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Budesonide is the active ingredient in Entocort EC.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
User avatar
Gabes-Apg
Emperor Penguin
Emperor Penguin
Posts: 8332
Joined: Mon Dec 21, 2009 3:12 pm
Location: Hunter Valley NSW Australia

Post by Gabes-Apg »

Keep in mind we are all different

there are some that could not tolerate budesonide/entocort at all. What works for one person may not work for another.

the other important aspect to this. Budesonide/Entocort is not the magic potion that will fix you.
all the medications do is mask/reduce the symptoms. It is not helping your gut to heal.

the only way to heal your gut, is to remove the triggers (foods, events, stress, external influences like chemicals etc)
and maintain a nuturing, low inflammation lifestyle plan.
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
User avatar
DebE13
Rockhopper Penguin
Rockhopper Penguin
Posts: 1657
Joined: Sun Nov 27, 2011 5:32 am
Location: Wisconsin

Post by DebE13 »

Thanks Glora, I've tried Imodium at different stages throughout my CC and have had no luck. Similar to pepto it doesn't do much and causes very uncomfortable cramping. I'm lucky in that I rarely have gut pains except with immodium and the higher dose of entocort.

I do get angry too when I see how different methods work for others and not for me. I've sworn a blue streak many-a-time asking the gods that be why the heck I cant get this under control- it's certainly not for a lack of effort. But the good news is I have made actual progress- it's just at a snail's pace. I could be much worse off not having the support and guidance from everyone here. I spent many years bumbling around in the dark trying to figure to figure this out on my own (with no success).

Gabes- you are so right.
:smile:
Leah
King Penguin
King Penguin
Posts: 2533
Joined: Thu Feb 02, 2012 10:16 pm
Location: San Francisco Bay Area

Post by Leah »

Yes, I was one of the lucky ones that got results quickly, but I also eliminated many many foods to try to heal as quickly as possible while on the drug. Have you tried to eliminate all nightshades ( potato, tomato, peppers, eggplant) yet? Sugars are another big culprit. You also could be one of those people who are reacting to either another grain other than wheat or one of the proteins you are eating. I know there are people on this forum who can't eat either chicken or beef ,or pork...etc. That's where Enterolab"s tests might be very helpful

Hang in there. Four days is not a long time and if you have a lot of damage, it will take a while.

Leah
Post Reply

Return to “Main Message Board”