Entocort taper - symptoms returning

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Cat-a-Tonic

Cat-a-Tonic

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I've been on Entocort for about 7 weeks now. The first 6 weeks, I was on the highest dose, 9 mg. About one week ago, I tapered down to 6 mg daily per my GI's orders. And since I've tapered to 6 mg, I've noticed more cramping, slightly looser stools, the fatigue creeping back in, etc. My GI said that Entocort plus Amitriptyline should put me into remission, but I am already starting to feel the old symptoms coming back again and I doubt I'll be in remission when I've finished the Entocort taper.

What should I do? Should I ask to be on 9 mg longer, or should I ask for something else? Since I'm still not diagnosed, my GI is very hesitant to put me on anything harsh like pred (even though we know pred works for me). Should I ask my GI about something milder, maybe something like Pentasa or Azathioprine? What would you guys do?
 
Everytime I tried to taper off entocort I would flare back up. I was able to get off completely but that only lasted a few weeks. My GI is now putting me on 6mp to get me off entocort. I would call GI and let them know symptoms are coming back and they might want to put you back on 9 mg.

Good Luck
 
I agree with Becky. Call your GI and let him know what's going on. I did that when I first started to taper off pred and my symptoms returned. As you know he upped the dose again for a longer time. Give him a ring and get some advice.
I am sorry to hear that your symptoms are returning after you were dong so well :( I do hope you get back to feeling good soon
 
Thanks Becky & Sam. I will call my GI, and I'll let you know what he says.

Sam, I'm still feeling fairly good, all things considered. Certainly not as bad as I was when I wasn't on any meds. But I can tell that the bad old feeling is starting to come back, and I'd rather stop it before I'm in full flare again! Are you still on Entocort, or are you on pred/aza now? Either way, I hope you are well too. :)
 
Yes I can well believe you do! I think it is far better to stop symptoms ifyou can asap. I'm still on Entocort. I've been on it a month now. I thought I'd battle through and see what happened. I have felt a little brighter since Friday so am hopin that maybe it just needed a bit longer in my system to get started! I'm still having some side effects and other symptoms but since Friday I am feeling a bit more positive which is always good :)
 
Hiya Cat

sorry this is happening to you now after everything you've been thro!
I read somewhere that Entocort doesn't work after 3 months, dunno if this is true, but it's worth considering if you need to up the dose, cos you've been on it 7 weeks now.
I was on both steroids, and found the Pred the lesser of 2 evils, it healed me, I have no symptoms now, except fatigue, and I think that's because my adrenal glands are still asleep! I've only been off the Pred for a week, but feel ok.
give the doc a ring and ask for advice
xxx
 
Sam, glad to hear you're feeling positive, and I hope things continue to improve for you! :)

Joan, I'm not sure about the 3 months thing, I did a bit of googling and I did find some information that said Entocort can be taken for up to 3 months, but it didn't say why. So I'm not sure if it stops working or if it just isn't safe or what after the 3 month mark.

I left a message with my GI's office, am waiting on a call back. I ate lunch a little while ago and am now having some fairly nasty cramps and pains, no fun! I hope when they call back they have some answers or advice for me.
 
Update: it's now about 12:45 AM here and I feel really awful. Been having a lot of d and pain and nausea, and as a consequence am not able to sleep, even with Amitriptyline. (Amitrip makes me really dizzy when I am awake under its effects, so now I've got the dizzies to contend with too.) Oh, and my hip joints are killing me, which is something that usually only happens during a flare - I don't know if this is a flare, though. I've just taken my second Lomotil and Zofran of the night in hopes that they kick in and ease my d and nausea. I'm also chilled to the bone, although I don't seem to have a fever. I'm wrapped up in blankets with my heating pad on and am thinking of making myself a mug of ginger tea.

At this point I'm wondering if I have a stomach bug, as I'm not sure that tapering Entocort from 9 mg to 6 could make me feel this miserable? I mean, it's not like I quit Entocort cold turkey, I just tapered down by 3 mg. And I've started feeling so worse so quickly - I would say that on Saturday my pain was at a 2/10, by Sunday it was a 3, and now it's about a 4 or 5. Ugh. I'm thinking tomorrow (today, really!) is going to be a sick day from work. I feel horrible! And my GI's office never called me back, so I will be calling and pestering them from the moment they open at 8 AM. I'm hoping at the very least they can bump me back up to 9 mg of Ento, if not put me on pred or something else to get me out of this flare-ish state.
 
Hiya Cat

BIG HUGS YOUR WAY!
hope they give you something to relieve you, maybe the Pred would be a better option? Entocort is localised in one particular area, so maybe your inflammation is somewhere else? Somewhere where the Entocort can't touch?
take care
xxx
 
Thanks Joan. The Entocort was working pretty well for me when I was on 9 mg, it definitely made a big difference. But now that I've tapered down to 6 mg, my symptoms have returned with a vengeance (the Lomotil & Zofran finally kicked in, so less d and nausea now, but still in pain and my joints & back are hurting a lot too).

Still 30 minutes to go until my GI's office opens. Ugh, I hate waiting, I need to find a GI who's on call 24/7! I doubt such a thing exists though.
 
Update: Ugh. I got ahold of my GI's nurse, who promised to try to track him down and see what he says. Apparently she didn't get ahold of him because I never got a call back. I'm feeling somewhat better, probably because I've been mostly avoiding solid foods and I've been self-medicating with Lomotil and Zofran. But I still feel like this could be a flare - my joints are still achey, I'm fatigued and my guts are in pain. Not fun.
 
So sorry to hear that you are sti not feelin great. Have they got back to you yet?
It's typical that as I start feeling better you start feeling worse! Maybe one day we will both be able to say we are feeling better :)
I hope that you are managing to get plenty of rest
Iv just spent an hour at my GPs surgery. Mostly just waiting. I wanted to ask him abou the side effects I'm getting from Entocort but he didn't seem to know anything about it :(
Will have to wait til I see my GI in two weeks...
 
Thanks Kelly & Sam. I finally just heard back from my GI's nurse, and I was told it's okay for me to go back to 9 mg of Entocort. But when I asked for how long, she didn't know, so now she has to go back to my GI and ask and then call me back, again. (It's not his usual nurse, it's some new nurse who's filling in, and she doesn't seem to know what she's doing - his usual nurses are much better.)

At any rate, I get to go back to 9 mg starting tomorrow (I have to wait until tomorrow since I already took my 6 mg dose this morning). I've called in sick to work yesterday & today, and I managed to rest and have a nice nap this morning, and I feel a bit better. I just had a tuna sandwich for lunch and am waiting to see if it makes a run for it or not, ha ha. I'm hoping to go back to work tomorrow. I'll let you guys know how it goes!

Sam, I hope you find a way to manage the side effects you're experiencing. And I hope when you start to taper that you have a much easier time of it than I'm having! Would you be able to call your GI and ask about your side effects? That way you wouldn't have to wait 2 weeks. I dealt with chronic Entocort-induced headaches for two weeks before I finally called my GI, and he was able to write me a prescription that same day for something to take care of the headaches. Anyway, good luck, I hope you get some answers about the side effects and glad to hear you're still doing well!
 
Glad you can go back up Cat. I hope it starts making a difference quickly. How long did it take you to start feeling symptoms returning after your taper?
My side effects arent too bad so I think I'll just wait until I see the GI again. It's maiy been dizziness and insomnia but neither are consistent. He did give me some wash for my spots so that's a start...
 
I feel for ya! I've been on entocort since August and I'm tapering for the 2nd time. Things get shaky at the 6mg dose and this week I'm down to 3mg and I'm back at square one. How long will you be on 9mg this time? I'm considering throwing in the towel on treatment since I dont want to be on steroids for lengthy periods of time and I dont want to do the heavier drugs, 6mp etc . What are your thoughts on that anyone? Those biologics and autoimmune suppressers scare me!
Hope you find the right treatment!
 
Hi 4peace. I'm not sure how long I'm going to be on 9 mg this time - the nurse said she'd check with my GI about that, but she hasn't gotten back to me yet. And I don't really have the choice right now of doing heavier drugs like 6mp, as I'm still undiagnosed. My GI put me on Entocort because he knows I responded well to pred when I was on it, but he doesn't want to put me on pred long-term because of the side effects, so he put me on Entocort because the side effects aren't as bad. But he doesn't want to put me on anything else since I'm still undiagnosed, so I'm stuck with just Entocort for now.
 
I was on Entocort for a little over 2 yrs. Tried to taper many times and had to go back up to 9 each time. My GI finally said it was time for 6mp. It is scary since i am also on remicade but I need something that works so I am giving it a try.
 
I've been on Entocort for just about 2 years now. I missed two doses two weeks ago and almost flared. Waiting for a call back from my doc now to see if I can change to biologics or something since Entocort obviously isn't for me.

Best of luck <3 Definitely keep us posted. It's not often I hear about other people trading up or down on Entocort.
 
Wow, Becky and Jessica, both of you have been on it for 2 years? I hope you are both able to get on something else that works for you. Becky, good luck on the 6mp and Jessica, good luck on the biologics or whatever you end up doing. I will be on 9 mg Entocort for another 6 weeks and then will attempt another taper. As I said earlier, I'm undiagnosed so I don't have the option of trying 6mp/biologics/another med as my GI refuses to put me on harsher meds until/unless I get diagnosed. And for now he's done doing tests on me, as everything has come back normal, so I am basically stuck. It's either Entocort or nothing. I'm afraid I'll be stuck on the taper/flare merry-go-round too. Oh well, at least at 9 mg I feel relatively human and pretty well. I guess it could be worse.
 
Hi Cat, I just read your post and wondered if you had tried doing alternate day dosing. So thats 9mg one day, 6 mg the next then back to 9mg on the third etc.
I was on Entocort for over a year and tried to come off and had a terrible time. Eventually in September I came off completely and had been off for three months when I had to go back on for a flare. During that three months I was suffering from dizziness which disappeared when I went back on.
But having said that all the other side effects had gone away.

I think sometimes it is difficult to distinguish between a flare and the side effects from steroid withdrawal. It sounds to me like you are suffering more from steroid withdrawal than a flare. Good Luck.
 
Hi Stephen, welcome to the forum. I haven't tried alternate day dosing, but I will definitely keep it in mind. It's been another 6 weeks of the 9 mg on Entocort, and I actually just started my taper today - took my first 6 mg dose this morning. I re-read this thread and it looks like it took a few days for me to be in full flare after tapering, so I'm kind of dreading the next few days. So far I feel fine, but it's only been less than a day.

If I flare up again, I will definitely ask my GI what else can be done med-wise. I'll also ask about the symptoms of steroid withdrawal, although I don't think I was going through that the last time I tapered - it really felt like a flare. I get the dizzies every time I flare, whether or not I'm on meds.
 
Hi Cat.
I've been on 6mg for a month now and seem to be doing ok. Hope you will do this time too. Will be down to 3mg in two weeks time (fingers crossed!) My GI didn't want mento stay on 9mg longer than 6 weeks even though it took 4 weeks for it to start working. They said next step would be AZA which I'd rather not if I can help it!
Let us know how you get on over the next week
Happy New Year to you too :)
 
Happy New Year, Sam! I will let you know how it goes with the taper. Fingers crossed that I don't flare - or if I do, that it's a mild flare.
 
Update: It's day 2 of my taper, and it's already not going well. Very crampy and nauseous this morning, and am feeling like a flare is imminent. Have stocked up on Ensure and am refilling my Zofran prescription. I'll see how the rest of the day goes - if I continue to feel worse tonight/tomorrow, I will be calling my GI tomorrow morning to see what else can be done.
 
It's now day 5 of my taper, and things are going better than expected. I'm having some pain & cramping but I don't feel like I'm in a flare. I think my body is just getting adjusted to the new lower dose. I don't think my body was ready after the first 6 weeks to taper, but this taper definitely feels different. I guess I must be more healed than I was 6 weeks ago! Could I possibly be headed towards remission? It doesn't quite feel like that yet, but who knows!
 
Thanks for your support, Miss H, Sam, and Alien. I'm now on day 10 of my taper and still doing well! No flare symptoms and feeling good, having mostly solid poos and very little pain or nausea.

I called my GI's office to see how long I should be on 6 mg before tapering, and his nurse said she didn't know but would ask the doctor and get back to me. She also said it would be best if I schedule an appointment, since I haven't seen my GI in a few months. So I have an appointment on Feb 17th to see my GI and let him know how I'm doing. I'm also going to ask about what he can put me on for long-term remission (I never thought I'd use that phrase! Ha ha!). I'm thinking something like Pentasa but I will ask him what my options are.

I hope everyone else is well. Sam, how are you doing on Entocort? Are you still on 6 mg?
 
Hi Cat
So glad to hear you're doing well. Tomorrow I go down to 3mg so have my fingers firmly crossed. Yesterday was a year since I first became ill so this week is a strange one but I've been quite positive which is good :)
I'm on asacol and have been since I first saw my GI back in April. I take 3 tablets a day. Not really sure if they help or not but I think when I first started them my Bms became more solid. It did little else though prob because I needed something stronger.
Hope you're appointment goes well. Let us know how you're getting on
 
Sam, I hope your taper goes well! How long are you going to be on 3 mg - another 6 weeks? Happy "anniversary" (if it can be called that). I got sick a little bit before you, I "celebrated" my one year illness anniversary in early October - right around the time that I started Entocort. So I spent one full year on no meds (unless you count the 5 days I was on 10 mg of pred and the 6 days that I was on 20 mg). That was a miserable year! I know your first year of illness was pretty horrible too! Hopefully the next year will be much better for both of us!

I was a bit confused as to all of the different types of mesalamine - Pentasa, Lialda, Asacol, Rowasa, Canasa, etc so I did some googling. It appears as though the main differences are oral pill vs. suppository (Canasa & Rowasa appear to be suppositories), and if it's an oral pill, the difference is in where it releases in your intestines. Apparently Pentasa releases in the same general area that Entocort does - around the terminal ileum and the ascending colon - so that one seems to make the most sense for me to ask my GI about. It looks like Asacol releases throughout the colon but not in any part of the small intestine, and Lialda releases around the end of the colon/rectal area. I'm interested to know, did your GI give you a reason as to why he put you on Asacol as opposed to Pentasa? I know there's a lot of guesswork with regards to meds, especially with both you & I being undiagnosed, but to me it seems to make a bit more sense that if Entocort works, then Pentasa should be the first choice since it works in the same area? Maybe I'm just confused - there are so many different types of this mesalamine drug out there!
 
Hiya Cat

You're dead right about the 5ASAs, and Pentasa would be the right choice for you.
I've been on it for 5 years with success and remission. Til, of course, my hospital stay with an infection last Jan!
Pentasa is all I take now.
I really hope this year is gonna be a good un for you! And you too Sam!
xxx
 
Thanks Joan! I am going to ask my GI about Pentasa. Unfortunately there's no generic version of it, so just like Entocort, it's going to be expensive. I hope my insurance covers most of it. I know that Entocort is about $1500 per month without insurance, and with my insurance I end up paying $75 per month for Entocort. I'm guessing Pentasa will be similar.

I wish they'd make generic versions of these drugs already! I only pay $10 per month for generics! Oh well. If it makes me feel better and helps maintain remission, then I guess I can't complain too much about the cost.
 
Update: So, I got a call back today from my GI's nurse. She had asked my doc about when I should taper, and apparently he has said that I should stop taking Entocort altogether on Feb 10th, one week before my GI appointment. No tapering from 6 mg to 3 mg, just stopping altogether! Is this normal or safe? My GI's nurse assured me that she made sure to double-check with my GI that those were really his instructions, so that indicates to me that this isn't the norm. It feels like he's treating me like a guinea pig, to see if I'll be in a flare when I go in for my appointment. I don't like it and I don't feel good about this. Anybody have any input on this? Anybody else just stop Entocort at 6 mg without tapering to 3 mg? And if so, did you flare up after stopping Entocort?

The other thing I asked my GI's nurse about was the possibility of Pentasa, and she said that's something I'll have to ask him about in person when I go to my appointment. Great. So I will be stopping Entocort with no "safety net" essentially. I really, really dread stopping Ento now! Can somebody please tell me it'll be okay?
 
http://www.crohnsforum.com/showthread.php?t=6180

Hiya Cat

This is an old thread, and quite conflicting views going on!
See if you can contact the doc and ask again, there's a good chance you might start flaring again, and maybe this is his intention, I would think the same too! Only cos I'm dead suspicious! lol
Quiz the old goat!!
good luck!
xxx
 
Allie, I started this thread awhile back, when I first tapered Entocort and my symptoms returned and I flared up. Since then I've tapered successfully and am now approaching the end of my Entocort journey and have chronicled all that in this thread rather than starting a new one. I'm doing relatively well at the moment, although I'm dreading stopping Entocort next month.

Joan, thanks for the link, and you're right about the conflicting views! I still don't know what to do - I don't want to flare, but I think my doc wants to see if I do flare. I guess it would be good to know whether or not I can go from 6 mg to nothing and be okay, although the consequences of failure would be a flare and I don't want to flare. I looked at Entocort's official website too and that seems to say that it is safe to go from 6 mg to stopping without going down to 3 mg. My GI's nurse did say that if I do flare after stopping Ento that I should call my GI's office immediately and not wait for my appointment, so I imagine that means my GI would put me back on Ento if I did flare - he's said in the past that if I get into remission on Ento and I later flare again, he'd put me right back on Ento. So at least there's that.

Ugh, I just don't know what to do. The worry of stopping Ento is putting my guts into a knot, so I've got to stop worrying about this for now. I guess, unless I can come up with another plan, I'll stop Ento on Feb 10th as my doctor said. If I flare, I'll call his office demanding him to put me back on 9 mg and to let me taper from 9 to 6 to 3 this time, rather than stopping at 6. And I'll ask for Pentasa whether I flare or not.
 
Hiya Cat

If you flare after stopping, and it's only a few days, go back to 6mg, not 9mg, then taper to 3mg. I did something similar.
Try not to fret about this, it'll make you anxious, rest now and have a good weekend!
xxx
 
Cat-a-Tonic said:
Thanks Joan! I am going to ask my GI about Pentasa. Unfortunately there's no generic version of it, so just like Entocort, it's going to be expensive. I hope my insurance covers most of it. I know that Entocort is about $1500 per month without insurance, and with my insurance I end up paying $75 per month for Entocort. I'm guessing Pentasa will be similar.

I wish they'd make generic versions of these drugs already! I only pay $10 per month for generics! Oh well. If it makes me feel better and helps maintain remission, then I guess I can't complain too much about the cost.
Click to expand...


Drug price for entocort is £99 oer 100 capsules, Pentasa Mr (usual maintenance dose 3 per day) is £25.48 per 100 caps. How they can justify $1500 per month for entocort when it costs £99 + vat in uk is beyond me. At least pentasa is a quarter of the price.
 
I've got to be on 3mg for 6 weeks. Which is the same amount of time I've been on 9 and 6mgs. That's what I've been told by my GI. I was worried about tapering as it took a month to see the benefits but dropping to 6mg was fine and I've been at 3mg for the past few days and it seems fine. However if I ever manage to sleep in for an hour or so I always feel sort of hungover and I can only imaging it's because my body needs Entocort. So I am worried about going from 3mg to nothing so can only imagine what you are feeling Cat.
As to Asacol... When I first saw my GI and he suspected it was CD he immediately put me on it before any tests or other meds and basically said that it may help and if it doesn't it won't do me any harm. When I last saw my GI on December I double checked I should still be taking it and he said I should. I might ask about pentasa next time though.
Hope you're still doing ok
Joan - I also hope that this year is a fantastic one for you
x
 
Thanks Sam

Unfortunately this year hasn't started well at all! Only been back at work a week, then I've hit the deck again! Back on Entocort 9mg. Bummer!
xx
 
Little Miss H: I have no idea how they can justify charging so much for drugs here. I just hope that someday soon there will be a generic version of Entocort (and Pentasa too) as I only have to pay $10 per month for generic drugs.

Sam: I once missed a dose of Entocort back when I was on 9 mg per day, and the only problem I noticed was a headache. No withdrawal symptoms or anything like that, although it was only one day. And when I first tapered to 6 mg, the flare hit gradually rather than all at once. After a couple of days I noticed more pain, then the next day some d, then more pain, nausea, etc over the course of a few days. It took maybe 5 or 6 days for me to be in a full flare again after tapering. So if I do flare after stopping Entocort, I should hit full flare just about the same time that I have my GI appointment. If that happens, I will be in his office screaming and crying for him to put me back on it or get me on another med that works! I'm going on vacation to the Grand Canyon at the end of March and I refuse to be in a flare during my trip if I can help it, so I WILL insist on more meds! Can't keep going from pred to flare, Ento to flare, etc. I need long-term remission!

Joan, sorry to hear your 2011 hasn't started out so well. :( I hope the Entocort knocks this flare out quickly! I said this in your other thread, but let us know if you get a scope or if you get on humira or whatever ends up happening. Good luck, will be thinking of you!
 
cat,
I hope you manage a flare free taper and a great holiday.
We are coming to America in early April as long as aza works it's magic...Though seriously hacked off today and worried about our holiday as my blood count has dropped yet again so more blood transfusions and iron infusions for me . Fed up of being prodded, poked and stabbed
 
Cat - I really hope you do well with your Entocort drop from 6mg to zero. I know I wouldn't be able to do that. But hopefully things will work well for you. You will know right away if you can or can't. Try to wait though, just like with your taper from 9 to 6. You weren't sure at first, but then you were ok.

And I've been on asacol since I've been diagnosed. 1200mg 3 times a day. I know it works at least a little though. If I miss a dose, I'm feel so terrible.

Good luck with your GI appointments and meds. Glad to see someone is getting off some pills.
<3
 
Thanks Jessica. I haven't seen you around the forum in a bit, how have you been?

I'm just trying not to think about how I have to stop taking Entocort in 2 weeks. I'm trying to distract myself because I am just not able to think positively about it right now, so rather than sit around and worry, I'm just trying to keep my mind off of it altogether!

Little Miss H, I hope you're doing better today and have fun on your vacation!
 
Thanks cat, I'm a bit more upbeat now that have had a couple of units of blood. I've just started the Venofer infusions yesterday so hopefully that will prevent my hb dropping so much. Still no side effects from the azathioprine either.
I hope you are ok when you stop your entocort..will keep my fingers crossed for you and hope you can distract yourself til then. I am probably going to start trying tapering my pred when I next see gastro in just under 2 weeks but at least I have a maintenance drug on the go.
My husband is taking me to see a film when infusions over with...Colin firth in the kings
speech....better than any meds !!
 
I had the same issue with Entocort. I was taking it with Asacol (the Asacol alone didn't stop my most recent flare)...and he swtiched me right away to Prednesone. What I am pissed at myself about is that I didn't call him sooner. I lived with the increased bowel movements hoping they would get better...so I put myself back to where I started. Now I am starting all over again...you know? But Prednesone does a good job right away. Now I am starting on Imuran (the generic version) and I am praying when I taper this time I will be good. Oh please...I am praying it will be good. I feel bad since I know its scary when you think you are better and then you are not. There are still many meds out there to try. I thought it was just imuran and Remicade...and I am thinking if Imuran doesn't work I only have one last resort but it looks like there are many cocktails out there...that is comforting...I think...good luck to you. I will be watching for more posts to see how you are doing. I am new (today) and hooked on this site. I have learned so much. Thank you to everyone here for being so open and candid. It really does help.
 
Little Miss H: Glad to hear you are doing better. Enjoy the movie, it's been so long since I've gone to see a movie. Usually I just wait for stuff to come out on DVD/Netflix. I like going to the movie theater but the smell of popcorn drives me nuts - it smells soooo good and I know I can't have any! I usually sneak in some safe snacks for myself but it's not the same.

Spin Girl: I know there are a lot of meds out there, but I'm in a unique situation. I'm undiagnosed so my GI doesn't want to try any of the harsh meds on me (he won't even put me back on pred) since he doesn't know for sure what I've got. I most likely have IBD, especially since I do respond well to both pred and Entocort, but all my test results have come back normal. I've had pretty much every test available and my GI doesn't want me to have further tests now because they'll likely come back normal too. He feels that Entocort is mild enough for me to take, so that's pretty much my only drug option at this point. I'm going to ask him about Pentasa at my next appointment since I know that one is pretty mild too and I'd like a long-term remission med to try to avoid further flares. But yeah, for now, Entocort is my only option if I do flare. I suppose if I flare badly enough they'd re-run some of the tests to try to see what's going on, but for now I'm kind of stuck in diagnostic and medication limbo.
 
You know...what is strange is that I show signs of UC but my diagnosis is Crohns...even though my Crohns test came back normal. The second GI opinion I got told me it probably would. Which is good - my small intestines are not involved...yet...BUT he said there was some mild granuloma he saw - not sure what that means really - and that, couplied wiht the fact that I have strictures and in 1985 I had a fistula which are both prone to Chrons and not UC...he is telling me he is sure its Chrons. Which now means if I have my colon out I can't have a J pouch...or so I'm told....I don't understand why some on this site with Crohns are able to have reversals...doesn't jive with what 2 GI and 2 surgeons have all told me...I am missing something...instead of fitting pieces into the puzzle I keep finding more!!! happy to hear you may have IBD and not UC or Crohns. I hope your current meds work for you Cat-a-tonic!
 
Spingirl: IBD (Inflammatory Bowel Disease) is the family of diseases that UC and Crohn's belong to (were you thinking of IBS maybe? Irritable bowel syndrome? That's different, but I don't have that). My GI I might have either Crohn's or microscopic colitis, but at any rate I most likely do have some form of IBD. Sorry if I was unclear there.

I don't know a lot about jpouches or ostomies so I can't be of help there. I know there's a stoma subforum where they could probably answer your questions about reversals and so on.
 
Cat-a-Tonic: I thought IBD and IBS were the same thing...ahhhh...learned yet another something today. You were clear...I just didn't know. I am sorry though to hear this though...would have been nice to not have any relation to the family of this disease!!! Sorry. All I can say is take what they give you even if you feel better. I made the mistake of going off my meds...never took them unless I felt bad...and then it came back fast and furious when I lost my dad...after years and years...my GI doc knew I wasn't taking it as I should...he did colonoscpoies and never really warned me...I was stupid but still...if I had known what was in store for me. I'd like to know if strictures can reverse themselves with medication enough to be fine again. I just can't imagine scar tissue doing that. I have to really spend more time on this forum. Just found you yesterday...I just need like a month.
 
Hey Cat, I've missed this whole episode!! Hope your taper continues to go well. Try to think positively:)!! I know, it's easier said than done and especially easy for me. Good luck!!
 
Spingirl: No worries, it's easy to get confused. I don't know much about strictures either, not sure if they can go away on their own. I know that there's a procedure where they can go in with a scope and sort of stretch out the stricture, and there's always resection surgery. You can search the forum for threads about certain subjects - at the top right, there's a "search" dropdown and then you can enter keywords to search the forum or the wiki. You might want to give that a try and see if you can find answers to some of your questions.

Mark: Welcome to the thread! It's hard to think positively but I'm trying (well, really I'm just trying to keep my mind off of it altogether for now!). If I do flare upon stopping Entocort, that might convince my GI that I need stronger meds and/or long term maintenance meds such as Pentasa. If I don't flare, I guess that will mean I'm in remission? It doesn't feel like it though, even on the Entocort I still have bad days with d and nausea etc. So I'm not looking forward to stopping the Entocort, but at the very least I guess it will be a learning experience.
 
Hey Cat, I was on Entocort for a long time last year...and EVERYTIME I would start to tapper, I would have symptoms returning. They were mild and bearable at first and then it would him me like a ton of bricks and I would be sicker that I was to start with. Pay close attention to your body and listen to your inner voice, if your not feeling right...or not ready yet, the go with your instinct. Entocort never did work for me, I ended up on lots of Prednisone and Remicade....and FINALLY after an entire year of flare, things are under control. I am tappering of pred right now and a little worried about how things may go...I hope you get to feeling good again!! And keep us posted~
 

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