Hi all,
I am tapering off Entocort again, and it’s not going well. The Dr. gave me a schedule, each step down lasting two weeks. I am again so constipated and I’m “far from pooping”. I’m miserable and in pain. Again the pain is on the left side, waist high, and it is sometimes debilitating along with other digestive pain and upsets.
Needless to say, I have stepped down the medication more quickly, each step down after about 1 week instead of the 2. Right now I take 2 pills one day and 1 pill for the next 2 days and so on. I’m going to try to stay on this the rest of this week and then go to 1 pill a day for 2 weeks. I’ve been taking Citrucel each night and added Colace stool softener. It hasn’t helped. I have gone a little, hard nuggets that sink right to the bottom of the bowl. It somewhat temporarily relieves the pain but I am always so uncomfortable. I feel like taking a whole box of Ducolax!!!
I’m glad we can talk about these things on this forum; otherwise I would feel so alone. I have been on Entocort since the end of May and I want to get off of it already, its wreaking havoc and probably ruining the little improvement that I had with my osteoporosis. I just want to get off of this merry-go-round, enough already!!!
Thanks for letting me vent a little, I needed too.
Susanne
2nd time tapering of Entocort and it’s not going well again
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Hi Susanne,
Having tapered off of Entocort and being C prominent (so I have lived the hard nugget thing) my suggestion is really to keep going with your titration, probably the sooner the better. Based on my experience the constipation and cramping I had were actually the result of taking more Entocort than I needed at the time. The cramping stopped when I was finally free of Entocort. Since i tended toward C my GI doc did put me on a regimen of small doses (starting with 1 teaspoon) of Citrucel and 2 stool softeners (I also used ducosate sodium, not the magnesium based softener). It helped me while i was healing, but now I've healed and don't need either anymore.
I'd say stay the course, get down to 3 mg Entocort, stay with the softeners for sure and use your own judgement about the fiber. If you can eat a little fruit you might see if that helps. I was eating dried apricots OR about 1/2 an apple a day (sometimes with peeling and sometimes without). There's nothing wrong with what you are doing. It's actually very much like what I did under the supervision of my GI. More than likely you simply don't need the Entocort anymore, so it's not helpful and in fact may be giving you side effects.
Keep us posted on your progress.
Carol
Having tapered off of Entocort and being C prominent (so I have lived the hard nugget thing) my suggestion is really to keep going with your titration, probably the sooner the better. Based on my experience the constipation and cramping I had were actually the result of taking more Entocort than I needed at the time. The cramping stopped when I was finally free of Entocort. Since i tended toward C my GI doc did put me on a regimen of small doses (starting with 1 teaspoon) of Citrucel and 2 stool softeners (I also used ducosate sodium, not the magnesium based softener). It helped me while i was healing, but now I've healed and don't need either anymore.
I'd say stay the course, get down to 3 mg Entocort, stay with the softeners for sure and use your own judgement about the fiber. If you can eat a little fruit you might see if that helps. I was eating dried apricots OR about 1/2 an apple a day (sometimes with peeling and sometimes without). There's nothing wrong with what you are doing. It's actually very much like what I did under the supervision of my GI. More than likely you simply don't need the Entocort anymore, so it's not helpful and in fact may be giving you side effects.
Keep us posted on your progress.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Susanne,
FWIW,
with Carol. She covered it well, so I don't have anything to add.
Good luck with your tapering process.
Tex
FWIW,
with Carol. She covered it well, so I don't have anything to add.Good luck with your tapering process.
Tex
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.
Hi all,
Thanks so much for the feedback and encouragement.
I called my GI Dr. yesterday but there was no return call. I dropped myself down yesterday to 1 per day from a 2, 1, 1 regime. I had been on that for about 1 week. I'm taking Citrucel but I take it before dinner as it makes me feel too uncomfortable after I have eaten dinner. I did take Colace stool softener, but discontinued it, I was afraid D would return. I will try them again.
The Dr. told me that my big flare in August while I was tapering off Entocort was because I tapered too quickly. I told him maybe but I had so much on my plate at that time and I was under alot of stress as well. I hope that 1 week at each dosage isn't too quick, and things have calmed down on the homefront for now. I'm going to try and stay on 1 a day for at least 2 weeks, only time will tell.
Thanks again.
Susanne
Thanks so much for the feedback and encouragement.
I called my GI Dr. yesterday but there was no return call. I dropped myself down yesterday to 1 per day from a 2, 1, 1 regime. I had been on that for about 1 week. I'm taking Citrucel but I take it before dinner as it makes me feel too uncomfortable after I have eaten dinner. I did take Colace stool softener, but discontinued it, I was afraid D would return. I will try them again.
The Dr. told me that my big flare in August while I was tapering off Entocort was because I tapered too quickly. I told him maybe but I had so much on my plate at that time and I was under alot of stress as well. I hope that 1 week at each dosage isn't too quick, and things have calmed down on the homefront for now. I'm going to try and stay on 1 a day for at least 2 weeks, only time will tell.
Thanks again.
Susanne
Susanne,
I am right where you are - trying to taper down. Went back to 2 for a week...now started alternating 2-1...this morning "not so good" and I am wondering ?meds ?food....maybe the nuts I added in - but for 3 days I tried them and was OK....hmmmm...this puzzle is confusing to say the least. I want someone to say "Just do this and you will be fine.".....it is tough being in the driver's seat sometimes - which way to turn???
I am right where you are - trying to taper down. Went back to 2 for a week...now started alternating 2-1...this morning "not so good" and I am wondering ?meds ?food....maybe the nuts I added in - but for 3 days I tried them and was OK....hmmmm...this puzzle is confusing to say the least. I want someone to say "Just do this and you will be fine.".....it is tough being in the driver's seat sometimes - which way to turn???
Everything will be ok in the end, if it's not ok, it's not the end.
Hi all,
The very 1st time I tapered off Entocort in 2011, I don't remember having a terrible time with it. I started the Entocort in June 2011 and was done with it in November 2011 and was in remission for well over a year with a couple of tiny flares that came and then went as quickly as they came. It wasn't this roller coaster ride on I'm now.
After my call to my Dr. yesterday, the GI's office left a message on my cell phone today to continue tapering off Entocort and to take Miralax for the constipation. Has anyone tried that? I took Colace and Citrucel today. I don't care which product I use just as long as D doesn't come back.
Depending on the constipation issue, I'm going to try to stay on 1 pill a day of Endocort for the 2 weeks. That's how long the Dr wanted me on each dosage.
I meet with several old high school friends every month and they know of my problem. One of the girls has colitis, which kind I don't know but her GI Dr. told her to take Flax seed oil which she swears by. When she has D it calms everything down and stops it and if she's constipated it helps her go. Anyone heard of that? She says it tastes disgusting.
Susanne
The very 1st time I tapered off Entocort in 2011, I don't remember having a terrible time with it. I started the Entocort in June 2011 and was done with it in November 2011 and was in remission for well over a year with a couple of tiny flares that came and then went as quickly as they came. It wasn't this roller coaster ride on I'm now.
After my call to my Dr. yesterday, the GI's office left a message on my cell phone today to continue tapering off Entocort and to take Miralax for the constipation. Has anyone tried that? I took Colace and Citrucel today. I don't care which product I use just as long as D doesn't come back.
Depending on the constipation issue, I'm going to try to stay on 1 pill a day of Endocort for the 2 weeks. That's how long the Dr wanted me on each dosage.
I meet with several old high school friends every month and they know of my problem. One of the girls has colitis, which kind I don't know but her GI Dr. told her to take Flax seed oil which she swears by. When she has D it calms everything down and stops it and if she's constipated it helps her go. Anyone heard of that? She says it tastes disgusting.
Susanne