I'm off Entocort! Wish me luck!

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Cat-a-Tonic

Cat-a-Tonic

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As some of you know, my GI has decided to take me off of Entocort as he feels I could be in remission (I don't exactly feel the same - I still have occassional LRQ pain and I still have about one bad day per week so I doubt this is really remission). So today was my last day of taking Entocort - I'm going from 6 mg to nothing, no tapering down to 3 mg, which scares me a bit as I had a hard time tapering from 9 mg to 6 mg. I see my GI one week from today, at which point I may or may not be flaring.

On a side note, I'm trying to exercise Murphy's Law so that I don't flare. (If you're unfamiliar with the concept, Murphy's Law basically states that the more you prepare for something, the less likely it is to actually occur - it's not really a law but just an old saying.) I'm trying to be as prepared as possible for a flare in the hopes that it won't happen. I've stocked up on wet wipes, TP, Gatorade, Ensure, bananas, tea, rice, Calmo, Lomotil, Zofran, you name it. I've got a few new Nintendo DS games and I'm going to pick up a couple of new DVDs today. I'm going to do the laundry tonight so that I have lots of clean fresh sweatpants. Everything that I could need for a flare, I've got it. Think it'll work? I hope so! Wish me luck! I might need it! ;)
 
Hi Cat,
Wishing you all the luck in the world, and if thing's don't go quite as planned then you certainly are well prepared! (think I should take note of your list!).
Hope you have an easier ride from here on in, you certainly are due some good luck.
Sending loads of best wishes and luck.
Andrea
 
How long were you on 9mg, then 6mg? I've been on 9mg for 3 weeks and don't even see my GI for another 4 weeks. I'm hoping at that time, he'll have me start tapering.
 
Andrea: Thank you! :)

Stephanie: I was initially on 9 mg for 6 weeks, and when I tried to taper I flared up so my GI put me on 9 mg for another 6 weeks. So a total of 12 weeks at 9 mg. The second time I tapered it was much easier, and I'd been on 6 mg since just after New Year's, so about 5 weeks on 6 mg. I think about 6 weeks on each level is pretty standard, so I wouldn't worry too much about being on 9 mg for 7 weeks. But please do call your GI if you are worried or have questions about tapering.
 
Thanks Little Miss H and Sam! Sam, I hope it goes well for you too! I wish you luck, keep me posted on how it goes.
 
Hey Cat,

Wishing you all the luck in the world hun!!! I hope more than anything the doc is right......................

:goodluck::goodluck::goodluck:

Wishing you luck and good times ahead too bushy! .........

:goodluck::goodluck::goodluck:

Thinking of you guys, :hug::hug:
Dusty
 
Thanks Dusty! :) Sam, I'll be cheering for you! Hoping we both get off the Ento flare-free and in remission!
 
Good luck, Cat!

When I tapered I was only one each level for about a week or so, starting from 9 mg. Some peopel are, of course, different and require a more extended taper, but I don't think tapering normally takes that long. Maybe I'm wrong.

Either way, I hope you experience no problems! :)
 
Dear Cat & Sam

This is it girls! I'm really hoping this will work for you both, lotsa luck and of course, as always, lotsa luv!
xxxx
 
Marisa, you're probably right that tapering lengths can vary - I got the 6 weeks from the fact that both Sam & I seem to be on the same 6 week taper. (She's always copying me, ha ha, or maybe I'm copying her - I think we both had our endoscopies and CT scans around the same time too and we might have even been on pred at the same time too - all purely by coincidence!)

Thanks Joan! I'll let you know how I do and of course I wish Sam all the luck as well! :)
 
Update: It's day 4 of being off the Entocort, and I'm still doing well! No flare yet (now I feel kind of ridiculous with 8 bottles of Gatorade in my fridge, ha ha). I had some d on Saturday but since then it's been fairly normal poos, and no pain and just the tiniest bit of nausea yesterday, but I think that was from stress because I felt the nausea while we were driving to my in-laws' house! Fortunately my father-in-law has finally gotten the idea in his head that I do have an actual illness - at one point my husband said something about how I can't eat that much anymore, and my f-i-l actually jumped to my defense (!!!) and said that my husband should be nice to me and that it's got to be difficult to have an illness that makes my food options so limited. I was shocked!

(Some of you may remember when I posted about this awhile back, but for those who don't, my father-in-law was pretty mean to me around the time that I first became sick, and at one point last year he basically said he thought I was psychosomatic or not in "that much pain" and that I should just suck it up and eat regular food. So for him to finally "get it" and defend me now is such a surprising turnaround in attitude for him! And it makes me really happy. :))

Anyway, I'm babbling on, but long story short I'm still doing well off the Ento. I see my GI on Thursday and I'm going to ask for Pentasa for long-term maintenance. I'm also going to ask what to do if I do flare up again in the near future - I assume he'd put me back on Entocort again but I want to make sure. Hopefully my GI can tell me some good things!
 
Don't know how I missed the last few post... Anyhow thanks Joan and Cat.
Cat - I hope I can indeed keep copying you and keep well in a week or so when I too come off Entocort!
I'm so glad to hear you are doing so well. It's good that you have an appointment with your GI so soon too (small sigh of jealousy ;) )
Keep us up to date on what is happening with you and I'll see if I can copy it in a weeks time!!!! :D
 
Hiya Cat

I wish you all the luck in the world! You need a break now.
There's a good chance Entocort will rear it's ugly head again for both of us, but hoping it won't! and really hoping it won't be the Pred!
Pentasa is a good choice to maintain, I've been taking it for 5 years, only had one massive inflammation and hospital stay in all that time.
Stay well xxxx
 
Cat - Glad things are holding steady off the Entocort!!! Good luck at the GI this week - hope you get a good report!

- Amy
 
AWESOME, Cat! So happy for you!

And that is GREAT news about your FIL. :) I hope he remembers that for the long term, even when you are feeling so good!

Enjoy your new-found health :)
 
Hey sorry I've missed this Cat!! Glad it's still going well for you and I hope it continues!!
 
Urgh. Well, I'm not quite as well today. Still not flaring, but in some pain and it's a new pain which is worrying. Upper left/central pain, just below where my ribcage ends. Also I'm having some d this morning. Ugh. Just don't feel quite right today.

On the plus side, this should give me a better shot at getting Pentasa, since I'm currently only on Amitriptyline (my GI thought that Amitrip would be an okay long-term maintenance med for me, but I don't think it's doing much besides helping me sleep). Only 2 more days until I see my GI so it'll be interesting to see if what happens between now and then. I don't want to flare, but on the other hand, if I do flare upon coming off of Entocort, then it must mean I've got an IBD, right?
 
Sorry you're not as well but I suppose its better if its going to happen it is before you see the GI, rather than 2 hours after you see him. Lets hope he has a reasonable plan of action for you.
 
Sorry to hear that Cat. I hope it's just a temporary thing. I felt dreadful Sunday into monday morning but after that I felt much better. I hope it's the same for you.
Good luck with your appointment. I can't see why your GI wouldn't give you pentasa or another similar maintenance drug
 
Just got back from my GI. Still been having some nagging pain & d over the past couple of days. I asked about Pentasa but my GI said that since I'm still undiagnosed, he doesn't want to try me on any new meds just yet. He said right now, he still wants me to have a period of feeling well and not having any more tests just yet. So he's putting me back on 6 mg of Entocort and keeping me on that dose for 3 months, at which time we'll re-evaluate and probably do more tests (he mentioned MR enterography, at least I think that's what he said, although I'm not quite sure what that is - anybody know? I had an MRI in late 2010 but I think this is something different). He said that he feels it's relatively safe to be on Entocort for 6 to 9 months, so that's where we're at now.

I guess I'm okay with this, and I probably do need to be on Entocort longer since I did start having d and pain again upon stopping it. I am going on vacation at the end of March so I'm glad to have the "safety" net of Entocort anyway. It's just frustrating to have so few options - I asked about pain meds, anxiety meds, and Pentasa, and I got none of them - my GI thinks that Entocort on its own should be enough. I really need to get diagnosed, so I'm looking forward to 3 months from now (actually probably longer as that's just my follow-up with my GI, it'll probably be another few months after that before I can get in for a test or two). In the meantime I'll stay here in limbo, where I've been since Oct 2009, and take my Entocort.
 
Aw Cat!

What on Earth is up with this man, hey? Since you're undiagnosed he won't give you a mild anti inflamm like Pentasa? But...
He's so quick to trolley up a steroid, yet won't give you a dx? It makes sense to me that if you've flared up after coming off Entocort, then wouldn't this warrant a dx of an IBD?
I'm frustrated now, bet you're reeling with this. I'm so sorry.
As regards to pain relief, I'm afraid Entocort isn't, you're gonna need something else if you're in pain, how about codeine phoshate?
Take some relief from the fact that you've got something to take for your holiday.
love lots and take care
xxx
 
Joan: I believe codeine is by prescription-only over here, and my GI refused to give me even that. I'm thinking of scheduling an appointment with my GP to see if he'd give me something like that. My GI wouldn't be happy about it, but he's been unhappy in the past about things other doctors have done and it's paid off in the end - such as the pred thing, I got that from a different GP and it was just a trial of pred, and my GI was furious when he found out as he feels that pred is very harsh and too much for someone who isn't yet diagnosed. But of course when I told him that I responded well to the pred, that's when he decided to try me on Entocort, and of course the rest is history. So it could pay off to try pain meds, even if it might piss off my GI.

As far as my current "diagnosis", my GI said "it seems as though you have an unspecified chronic enteritis" but he's not willing to say it's an IBD until he sees some evidence. So I get to play the waiting game for now and then go back into the wonderful world of having tests in a few months. Bleh. You're right Joan, it is terribly frustrating and I hate being in limbo! It sucks!!
 
Oh Cat! I totally agree with Joan. Why give Entocort and not pentasa. As you probably know my GI gave me asacol on my first visit saying it won't hurt me and it might do some good!
At least you know you'll feel good for your holidays :)
With regards to pain medication I can only take paracetamol. I've had codeine but it just bunts me up badly and gives me stomach ache. I can't take anything else. What do you want the pain meds for? I have got diazepam for my neck pain but that totally knocks me out!
I hope that you are not too disappointed with your appointment
 
Sam: My GI's reason for not giving me Pentasa was that the 5-ASA family comes with its own set of side effects, and rather than try something which may or may not work and which may or may not cause side effects, he'd rather put me back on the old tried-and-true Entocort as we know it does work and the side effects for me are minimal. So basically he'd rather play it safe given my history, rather than give me something new.

Paracetamol is Tylenol/acetaminophen, right? That's the only over-the-counter pain med I can take, and it doesn't do much of anything for me. I was hoping to get pain meds that are slightly better than Tylenol for abdominal pain - even with the Entocort, I do still get lower-right pains sometimes (especially if I've eaten something I shouldn't have). I was also hoping for something for anti-anxiety like a low dose of Xanax, but he didn't give that to me either - even after I explained that I'm going on vacation with my parents. Yep, just me and my parents, together for a full week. I can already feel my anxiety level rising! But he said "you'll be fine!" and didn't give me anything.

Oh, and now more fun has just happened in the past few minutes. Apparently there's some sort of issue with my insurance and my pharmacy is having a hard time refilling my Entocort (my prescription coverage changed as of Jan 1st, but I know I've refilled Entocort since then and had no problem with it, so I don't know what the deal is now). Good thing I still have some Ento at home!
 
Cat
I think it's a great idea to get your GP to 'pick you up' so to speak
My GP is my first port of call now, he prescribes my meds as do a lot of docs here in the UK, we see gastros only for 6 monthly check ups or if there are serious issues etc
I wouldn't give a flying frig if I pissed my gastro off, your GP should suffice for now.
Talk to him about pain meds, explain about how the gastro refuses to help etc
Codeine Phosphate is on prescription only and it does work in the short term, long term there are issues with constipation and it being addictive, but it's really handy to have in when you're desperate and in pain.
Another thing is, talk about upping the Amitriptyline to 50mg, as this might take the edge off your anxiety, this med is, after all, an anti depressant too.
Hope you get something sorted and good luck with the Entocort, you know it works, so this should ease your anxieties
xxx
 
MRI enterography of the small bowel is where they place a nasojejunal tube and put a contrast through it and then do an MRI. I was due to have this but had a pillcam instead. Neither can take biopsies, the only way to get biopsies and definitive diagnosis of the majority of the small bowel is with double balloon endoscopy- DBE.
I know how frustrated you must feel cat as I was in this boat for so long but at least you feel better than you did and you are taking a med that you know makes you feel better.

I do question his logic though- he says he wants you on entocort to maintain 'remission' and then do MRI enterography...but surely at this point you will be clear. Would it not be more helpful to do a test when you are symptomatic and therefore the test will show something.
 
littlemissh said:
I do question his logic though- he says he wants you on entocort to maintain 'remission' and then do MRI enterography...but surely at this point you will be clear. Would it not be more helpful to do a test when you are symptomatic and therefore the test will show something.
Click to expand...

I agree with this 100%. Also, I am surprised your doc wouldn't give you meds either. My GI wasn't 100% sure of my diagnosis right after my colonoscopy because my only symptom at the time was mucus. However, 2 months later my symptoms showed and she immediately put me on Lialda. My discomfort was enough for her to issue the meds. Did you ever consider a second opinion?
 
Hmmm I thought 5 asa's were pretty safe. Safer than steroids at least!
Still I guess every GI is very different in their approach especially with regards to the undiagnosed ;)
I wanted some pain killers that I could use for when/if I get a migraine or my bad neck pain. My gp could offer me nothing except paracetamol (I believe it's the same as what you mentioned) or the diazepam which I can only really take at night as it makes memory woozy. Not a good side effect for a teacher! Oh he did give me some piroxicam gel to rub on my neck (it's a bit like ibuprofen I think but as a gel isn't bad for the stomach) I wonder if you could use something like that for your stomach pain? No idea if it's suitable just a thought!
Where are you going on your holiday? I'm sure it'll be lovely :)
I hope your prescription gets sorted soon and you don't have to stress about that any more
 
Little Miss H: I did question my GI as to whether I should go off of all my meds before the MR Enterography, and he said no. And then I asked if anything would show up on it if I was still on Entocort when I have the test, and he said absolutely yes. I have my doubts too, and am starting to wonder if I should get a second opinion. But that's scary too because I would have to start all over, and probably with no meds. I just wish there was some easy and/or quick way to get diagnosed! It seems like everything takes forever.

But hey, who knows? All of the tests I had done in 2010 were done with me on no meds, and they all came back normal. So maybe if I'm on meds, I might get a positive result on one of the tests? ;) A girl can hope, right?
 
Sam: I thought the 5 ASAs were pretty safe too and they've got to be safer than steroids! I mean, come on. I know Entocort is safer than pred, but it's still a steroid. Oh well. Hopefully in 3 months I can do more tests and get myself figured out already!

I'm going on vacation at the end of March/beginning of April. One week in Arizona, hopefully soaking up some sun, visiting my aunt and going to the Grand Canyon. It's going to be a difficult trip though because my mom is gluten-free - she thinks she might have celiac although she's never been tested for it - I know I don't have celiac as I have had both blood tests & biopsies, so I will be eating my low-res diet and she will be eating her gluten-free diet. Basically we plan to not eat out very often as it will be hard to find somewhere that we can both eat at! I predict I will be stocking up on Ensures and bananas and other safe snacks as soon as we arrive so at least I'll have something to eat!

Oh, and I got my prescription sorted out. Apparently my pharmacy "lost" my new prescription coverage information. So I gave it to them again and now they have it in their computer so I'm good, I have enough Entocort refills for the next 3 months.
 
Phew! Glad that's sorted!
Your holiday sounds lovely. Could do with a bit of sun over here!
Have you thought about getting a second opinion? Your GI seems to have some "odd" ideas!
 
To get a useful second opinion get your gp to collate all the tests you've had done , meds you've had and your response to them. The new GI will then not need to repeat everything and he will also start with the understanding you have a steroid responsive inflammatory condition. A much better place to start.
Have a lovely holiday,
 
Sam: I have thought about getting a second opinion, but that's kind of scary to me right now. I would imagine that with a new doc, I'd have to start all over with the testing and the meds. A new doc might blow me off and say I've got IBS. It's like, my current doc isn't bad and isn't great - a new doc might be better or worse, and I'm not in a gambling mood these days. Maybe after the MR Enterography, if I'm still undiagnosed, I'll start looking into other GIs in my area & insurance plan (there's the other problem - I have a friend with Crohn's, and she said her doctor is good, but she's got different insurance than I do, and my insurance doesn't cover the doctor that she goes to! So even if I find a good doc, I won't necessarily be able to go to them!).

I do have to say, my GI has a "fellow" who has been sitting in on my last few appointments (I'm not quite sure what fellow means but she seems to be like an intern or a student doctor) who is very good and I like her a lot. She listens, writes down everything I say, is very thorough and seems caring. But she's only a fellow so she can't make actual decisions as far as what tests I have next or what meds I can have. If she becomes a full-fledged GI and stays within this area and within my insurance plan, I'd love to have her become my GI. So there's always that, whenever she stops being a fellow and assuming she stays here and doesn't go to be a doctor elsewhere.
 
Little Miss H: You don't think they'd want to repeat tests that have come back normal, to see if they can get a different result? I would imagine a new doctor would at least want to do some of the basic tests over himself, like a c-scope. And I don't know if a new doctor would want to put an undiagnosed person on Entocort, even though I've been on it for awhile now. I'm just afraid of the unknown, I guess. I don't want to take a gamble and then end up with a bad doctor. My current GI is okay, at least he hasn't said that I have IBS or that it's all in my head. He is trying to get me some relief and a diagnosis, he's just not doing it in the way I quite expected I guess. I don't know. Like I told Sam, I guess I'll see what happens with the MR Enterography and go from there.
 
If you feel happy with him that is the main thing and I would agree that he is at least taking you seriously and treating you with something.
A new GI wouldn't have to start you on entocort as you are on it. Asking for a second opinion is just that - a second opinion. If you find the first doc to be better you can go back to him. Before you go to a second doc you could ring and ask to speak with him and ask what he would do. It's not unreasonable , I guess to do that after your MRI. Though 3 months is a long time.
If changing your plan will make you worry , just stick with it.
 
Hey Cat. Sorry your doc isn't willing to try out the Pentasa, but at least they are in agreeance that they want you to feel GOOD! :)

Wendy just posted something in her "Folds" thread about getting an MR Enterography. I looked it up and it is almost identical to my CT Enterography that I had recently. Only difference being you're getting an MRI and not a CT. Most likely you will fast for 3-4 hours prior to your appointment and then once you get there they will give you the lovely (watered down, hopefully) barium contrast. Enterography just means they are targeting your small intestine.

You'll most likely get an IV contrast as well. :) Hope that helps. Here's an example of what to expect:

http://www.radiology.ucsf.edu/patient-care/services/mr-enterography
 
Marisa: Oh, not the IV contrast! I had a regular MRI a few months back, and they didn't make me drink anything (it was an MRI of my liver, not my guts), but they did inject me with IV contrast and I had a bad reaction to it! I hope they can give me another type of IV contrast. It made me super dizzy to the point where I almost passed out, and I started to panic inside the MRI machine and they had to pull me out and calm me down. It didn't take long for the dizziness to pass, fortunately, and I was able to finish the MRI without any further problems. But it was a bad experience, that moment of sheer panic that I was trapped inside a teeny tube and felt so dizzy. After they got me calmed down, one of the techs informed me that my reaction wasn't very common and that the most common reaction to the IV contrast was vomiting. They told me some people even vomit inside the machine. When they put me back in the machine, I noticed discolored flecks here and there - yuck, probably old caked-on vomit! So anyway, I will be very unhappy if they have to give me that same IV contrast again! Don't want to get dizzy or barf in the machine.

If I do have to drink barium again with this Enterography, I think I might take the full day off of work. The last time I had to drink barium, for my CT scan, it went right through me and I had pretty explosive d afterwards. Not fun either, but honestly not as bad as the dizziness episode! I'd rather drink barium than be injected with IV contrast.
 
OH no...I hope you don't have a reaction like that. Maybe you can find out what type of contrast you had injected into the IV last time and let them know you had a bad reaction. Or at least let them know you had a bad reaction to the IV. Perhaps if you have to drink barium that may be enough. Hopefully the experience isn't like the last one you had.

I understand about taking the day off of work. I had mine in the late afternoon and was happy to not have anything else to do later that evening because I was in the bathroom several times the rest of the day. Nothing too extreme, but enough.
 
Having to drink the contrast sounds a lot more civilised than the nj tube they use at the hospital where they do them here.
 
Marisa: I will definitely find out what type of IV contrast I had and request a different one this time, if possible. Hopefully they'll understand, especially given what happened last time. Or at the very least, if they do have to inject me with the same stuff, I'll request that they pull me out of the machine, inject me, wait for a minute, and then put me in the machine. When I had the bad reaction, they pulled me out, injected me, and then put me right back in the machine. I believe it was about 30 seconds after the injection that I got the massive dizzies and the panic. So if they could just inject me and watch me closely for like 60 seconds to make sure I don't pass out or puke, I could deal with that.

Little Miss H: I've never had an NJ tube or any other type of tube down my throat. Is it very unpleasant? I don't know yet the details of the MR Enterographies at the hospital that I go to (I searched their web page but couldn't find anything specifically about MR Enterography). So I don't know if they'll have me drink contrast or stick a tube down my throat. And honestly, if they did stick a tube down my throat it might be even more unpleasant for me than for the average person - I broke my nose when I was a kid and it never healed right, so I have all sorts of nasal and sinus problems now. For awhile I tried to do a neti pot to clear out my sinuses but my nose is so screwed up that it physically does not work for me. Sticking a tube up my nose and down my throat might be problematic. Hmm. One more question for me to ask when I do schedule the MR Enterography!
 
My experiences with ng tubes have been varied. The first time it took several attempts and was quite unpleasant but then my consultant tells me that an incorrect technique had been used. Once in it does make you feel a bit like retching but I got used to it after a few days.
The second time I already had the first one in and had another placed at the same time (long story) - this was inserted by an expert and went down very easily. The last time was again straight forward, possibly because I knew what to expect and had one in place before for several weeks.
It may be more difficult with a nasal deformity but one nostril may be easier than the other..it is definately worth mentioning if you need one placed.
Hopefully they will just ask you to drink the contrast!!
 
Sorry for the slow response...
I can totally understand why you wouldn't want to move GI's especially now he is more understanding of you. I asked really due to him not wanting to give you Pentasa but agreeing to Entocort. It just seems such an odd decision and I know you've had problems in the past. As littlemissh says it shouldn't be a bad thing to get a second opinion just to make sure your GI is on the right trackl.
However I also know how great it is to finally get someone to understand you. I've had a love-hate relationship with the two GI's I see. When I first saw the main GI and he said it was probably CD and gave me the Asacol I loved him! But then after my negative tests and they mentioned the words 'IBD' and 'depression' I hated him. Then when he let me try pred I loved him again. Now that I've responded to the steroids I think they're pretty convinced but if anything chnges again and they think otherwise I know I'll find it hard. It's so difficult to fight when you feel ill and someone thinks they know your body better than you do.
How are you doing now you're back on Entocort? I take my last tablet tomorrow :/
 
Sam: I know what you mean about having a love-hate relationship with your GI. Mine is good for the most part but he makes some decisions that I just don't understand, like the Pentasa thing. But for the most part he's good, and I know he really wants to get me a diagnosis - he once said I am "a tricky case" (sometimes I think I need a real-life Dr. House to figure me out!).

I'm doing well now that I'm back on the Entocort. No d, no nausea, no problems at all. Back to feeling almost normal again! :) I wish you a lot of luck after tomorrow and I hope you do well off the Ento. Hopefully the fact that you've tapered down to 3 mg before stopping will be a benefit - as you know, I stopped at 6 mg so I felt that was a disadvantage and probably why my d and other symptoms started to creep back in. Let me know how you're doing off the Ento, I'll keep you in my thoughts! Have you gotten an appointment with your GI yet? Did your GP write the letter?
 
Hey Cat, I found that here in the states, the GI wont give anything for pain...it falls on the GP to give you your pain meds. So push the GP for meds...they will write you for them...not like youve had them a bunch so they wont question it. Hope you feel better!!
 
Thanks, Bev - I've never asked any doc for pain meds, yet, so I didn't know that GIs don't usually dispense pain meds. I've just made an appointment with my GP for Monday so I'm going to ask about pain meds then. At first I thought maybe I can just deal with the pain, but then over the weekend my right hip started hurting and it's been painful for the past few days. I'm going on vacation at the end of the month and I'm sure there'll be a fair amount of walking involved, so I decided I should just see my GP already and get my hip looked at and ask for pain meds because I don't want to hobble around the Grand Canyon with an achey hip. I don't want anything that will make me loopy or nauseous or sleepy - anyone have good suggestions as to which pain meds have the least amount of side effects?
 
Hi Cat,
There are 2 main classes of pain killers- nsaids (non steroidal anti inflammatories) and opiates.
Nsaids ( aspirin, ibuprofen, diclofenac, naproxen, indomethacin etc are a no no really in IBD as they can cause flares or make them worse.
So you are left with opiates. Everyone reacts to opiates in different ways but the lower the strength the less likely they will cause side effects (mainly constipation, nausea, drowsiness).
The lower strength opiates are available over the counter -low strength codeine or dihydrocodeine and paracetamol combinations. You could try those first.

Then there are prescription strength codeine or dihydrocodeine with or without paracetamol. If you have them without paracetamol, you can alter your dose more easily ie take 2 paracetamol with one or 2 codeines etc. Codeine with paracetamol is called cocodamol in the uk.(8/500 or 15/500 or 30/500 which is 500mg paracetamol with 8, 15 or 30mg codeine)
Of similar strength to these are coproxamol (not available now in uk but very good), codydramol, tramadol.

You basically have to give them a go. Codeine 15mg are a good choice as you can increase the dose if necessary or stay on low dose. They do work better if taken with 2x500mg paracetamol though. Coproxamol is also good if available.

Hope this essay helps Cat.
 
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Thanks, Little Miss H. I believe all codeine here in the US is by prescription only, we can't get codeine over the counter at all even in low doses. I know NSAIDs are bad for IBD (which it is presumed I have) so I haven't taken any of them. The only pain med I've been able to get over the counter here that isn't an NSAID is regular Tylenol (paracetamol). So with the information you've given, I will probably ask my GP about Tylenol with codeine (are those called Tylenol 3?) or just codeine by itself in a low dose.

I think I'm also going to ask my GP for an anti-anxiety med to take with me on vacation. I get stressed easily, and going on vacation for a week with my parents will likely be very stressful!
 
Hi Cat,
I've just phoned up the hospital today and they have just done my appointment! It's for 17th March so I only have 2 weeks to wait. Hurrah! I phoned my GP last week and they had sent out the letter to the hospital on the same day that I had requested it. I was amazed!
I'm finding it so hard to know how I'm doing at the mo. I've been off Entocort for a week now but I don't know what being normal is. Nor do I know if what I'm feeling is just side effects from coming off the meds, my normal body or things starting to happen again. It's so hard to work out!!!
I hope you're still doing well
 
Sam: I responded in your other thread about how you finally got the doctor's appointment, but I just wanted to say again that it's great you finally got an appointment! I hope the next 2 weeks go by for you smoothly and without pain or symptoms.

I'm not doing so well today myself. I don't know what's up - I haven't slept well at all this week, even with the Amitriptyline, and it's really starting to take a toll on me. I've had some d and I feel really fatigued. Also, I've been noticing weird thoughts creeping into my head and I'm not sure if it's a sign of bad things to come. For example, I noticed that we're running low on TP at home, so I thought to myself, "I had better go to the store tomorrow and buy more TP before I flare again" - and then I was like, what? Did I just think that? I'm not going to flare, I'm back on Entocort. And then again today I noticed I'm starting to run low on mac & cheese, and I thought, "I'd better stock up so I have some for when I flare" - and again, I was like, what? My mind is thinking about flaring! I'm not sure if it's just because I'm feeling run down due to my lack of sleep or if it's a sign of things to come. But either way, I'm headed to the store to buy TP and mac & cheese!
 
Try not to stress about your flare-foreshadowing thoughts. Don't think of it as a sign of things to come - think of it as being smart and being prepared. EVERYONE needs to have lots of TP in their house at all times! Only a rookie runs out of TP or their favorite "safe" food!!!

Hang in there, Cat!!

- Amy

PS What is your real name, anyway???
 
Hi cat,
I think when you don't sleep for a while and are tired there is tendency to feel less positive and worry more. Best thing I find is to make a list of all the things to look forward too or little jobs that need doing to give yourself another focus. It may also make you sleep better. What dose of amitriptylline are you on? And how much caffeine in tea , coffee , coke do you have which may be stopping you sleep.
 
PS What is your real name, anyway???
Click to expand...

I believe you're the first person to ask that outside of a PM, ha ha. I suppose I've been on here long enough that I'm comfortable telling you guys. My name is Jamie. Catherine is my middle name, and frankly I like that name better, so online I tend to go by Cat. You can call me either. :)

I'm feeling much better today. I finally managed to sleep well and I have no plans for the weekend so I'm going to rest up more over the next couple of days. It's supposed to rain and snow here so I plan to curl up on the couch with a mug of hot chocolate and watch movies. (And yes, I did stock up on TP and mac & cheese so I'm ready for anything!) :D
 
Nice to finally know your official name! :) But, I will still call you Cat. ;)

Glad to hear you slept better. I agree that sometimes lack of sleep starts to make you think crazy things. Enjoy your weekend. It's already raining here!
 
Marisa: It's been raining here all morning too. Pretty gloomy, but at least it's melting the snow. :) Although we're supposed to get more snow at some point during the weekend. Hopefully it won't stick around long.

Little Miss H: I somehow missed replying to your post. To answer your question - I'm on 25 mg of Amitriptyline, and I avoid caffeine completely, so that's not the culprit. Coffee goes right through me and soda hurts - I think the carbonation bubbles get lodged in my guts and cause gas pain or something like that, so anyway, I avoid coffee & soda altogether. I pretty much only drink water, gatorade, decaf herbal tea, and Ensure these days. Oh, and the occassional hot chocolate of course. I know chocolate has a little caffeine in it naturally but I do chocolate rarely and in moderation so I don't think that's affecting me.
 
25mg amitriptylline is still quite a small dose so if you continue to have problems with sleep the dose can be increased. It is not uncommon to use doses of 150mg or more in depression though doses for insomnia, migraine ,neuralgia etc tend to be 50mg or below. The higher doses can constipate a little more and make you feel a bit 'hung over' in the mornings but the hung over sensation is often temporary. Worth thinking about if you continue not sleeping.
 
Cat - Yeah...it's supposed to turn into sleet tomorrow and then snow. Yuck. I'm so ready for spring! All this rain is such a tease! Haha.
 
Marisa, I know what you mean, I am so ready for spring too! And my poor dog wants to go out for walks in this yucky rainy weather but it's so miserable walking her in the rain. I need to invest in a treadmill so she can go for "walks" inside. ;)

Little Miss H: When my GI put me on Amitriptyline a few months ago, he said that 25 mg would be as high as he would like to go on the dosage. Technically he put me on Amitrip to control my headaches, as I got chronic headaches as a side effect of Entocort. So the helping me sleep thing is just an added benefit and not the main reason I'm on Amitrip. I do sleep pretty well most nights, I'm not sure why I didn't sleep well most of this week. I definitely plan on taking it easy and sleeping in and taking naps this weekend. I have no plans so I am just going to kick back and relax! :)
 
Dexky said:
Jamie??? You were mislabeled!! You're definitely a Catherine, Cat!!
Click to expand...

Ha ha, I agree. I have two big problems with "Jamie" - one is that it's gender ambiguous. So if I write an email to someone who doesn't know me, they see the name Jamie and half the time they write back "dear Sir" or "Mr.". The other problem I have is that my dad is named James, and people think I was named after him (I was not) or people think that Jamie is just a cute nickname for James (again with the gender ambiguity). In fact, my father-in-law calls me "James" because he thinks it's a cute nickname for Jamie, but I hate it. So yeah, whenever possible, I go by Catherine or Cat, because it's not gender ambiguous and Catherine is not a nickname for any other name. It's a real proper feminine name. Plus I love the nickname "Cat". :D
 
Hiya Cat (I like Jamie, but you're our Cat!)

I hope you're feeling better?
I'm not sure upping the Amitriptyline is a good idea, it's not the answer, and could cause more symptoms. Primarily this med was for your headaches, not as a sleeping aid.
Hope you're chillaxing?
xxxx
 
Joan, I agree, I think I'm going to keep my Amitrip level where it is (my GI probably wouldn't change it anyway). I have slept well and rested this weekend. Spent most of yesterday relaxing on the couch and today is shaping up to be the same. I thought it was supposed to rain & snow all weekend, but today is surprisingly sunny, so I did go shopping and take the dog for a walk, but now I'm back at home and relaxing. :)
 
I think you'll always be Cat to me ;) I just assumed that was your name!
Glad to hear you've got some good relaxing in. That's my plan for tomorrow!
 
Hey Cat, how you feeling now? I go to the doctor tomarrow and I think he wants to take me off entocort but I hope not because I am not feeling as well as when I was on the 9mg. He said 3 mths was the max time to be on the drug, but I have heard many others being on it longer. The feeling of fullness is back all the time, gas, bloating, joint pain, and constipation this time.Really sucks...either running to the washroom or pushing like hell.
Anyways wish you the best
 
Hi Chickee, welcome to the forum. I actually was only off Entocort for one week and then my GI put me right back on it, so I'm back at 6 mg daily for another few months. My GI wants me to follow-up with him in May and I presume he'll take me off of it again at that time. He said he feels that it's safe to be on Entocort for 6 to 9 months without risking long-term side effects or problems. In May I'll have been on Entocort for 8 months. I've talked to others here on the forum who have been on Entocort for several years. I believe 3 months is the recommended amount of time given by the manufacturer, but most doctors seem to believe Entocort is mild enough that it's okay to prescribe it for longer.

I know what you mean about not feeling quite as well when you were on the 9 mg. I've been at 6 mg for a couple months now, and I've been having more and more joint pain and new symptoms like acid reflux. But I'm still way better at 6 mg than I was on no meds, so I can deal with what few symptoms I've been having lately. I hope you feel better soon and your doctor either ups your Entocort or puts you on something else that gets you some relief!
 
Hey Cat! Guess what?! I'm copying you again :)
My GP has put me back on 3mg of Entocort until I see my GI next week as I'm suffering from fatigue and he thinks it might be to do with steroid withdrawal (though he knows little about Entocort)
The phrase "Copy Cat" really does ring true again! :D
 
Sam, that's too funny! I think we're long-lost twins. :D I just saw my GP too so I guess I'm copying you a little bit - and my GP also doesn't know anything about Entocort (he asked me if it's like prednisone so I explained the differences & similarities to him). Now, if your GP decides to send you to physical therapy or a rheumatologist then we'll really be like twins! That's my next step, I've been having more joint pain lately, especially in my right hip, so my GP wants me to go to physical therapy for it until I can get in to a rheumatologist, which will probably take a few months to get an appointment.

I hope going back on Entocort takes care of your fatigue. I wish it came in smaller amounts so we could taper by 1 mg at a time, like some people do with pred.
 
seen doc today, was suppose to go off entocort but because my symptoms bad they put me back on 9mg plus 80mg prednisone. **** I hate prednisone. had a partial bowel obstruction caused by constipation. Nearing time to deal with stricture.Hard to keep smiling
 

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