Crohn's Disease Forum » General IBD Discussion » Crohn's Polls » Do you take your medications?

View Poll Results: Do you take your meds?
I ALWAYS take my medications 89 66.42%
I usually take my meds 34 25.37%
I occasionally take my meds 5 3.73%
I'm terrible about taking my meds 6 4.48%
Voters: 134. You may not vote on this poll

09-01-2011, 03:43 PM   #1
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Do you take your medications?

I was reading a book last night that said studies have shown up to 40% of people with IBD don't adhere to their treatment regimen. Various drugs had higher adherence rates than others, but that number was quite staggering to me. Reasons for lack of adherence included things like having to take too many pills too many times a day, uncomfortable treatments such as enemas, and "feeling better".

Do you take your meds? If not, why not? This isn't a negative judgment, it's just interesting to me and I'm always interested in how we might help improve issues like this through technology/software/support structures.
It's good to be back
09-01-2011, 03:57 PM   #2
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Location: St Helens, Merseyside, United Kingdom

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When I was first dx in 2005 I took them religiously
Then I became complacent and blase (don't know how to put a little accent on the e)?
Then I nearly died
Now I'm OCD about them!
I'll never not take them again!


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

09-01-2011, 04:37 PM   #3
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Join Date: Jul 2011
i was diagnosised in 1990 taking my medication on time every day. Then i went into remission for 15 wonderful years and stopped taking my meds. Now the crohn's has hit me again, now i take them everyday there may be a lot of medication but it is worth in the end. If someone asked me about taking the medication or not taking the medication and try diet only i would tell them to take there medications it is a very important maintence plan because you don't know when a flare up might happen like it did with me.

“The greatest gift that you can give yourself is a little bit of your own attention.” Anthony J. D' Angelo____________________

Dx Crohns 1990
Present medication
Asacol 2400mg and prednisone and buscopan and demerol for pain
Omega -3 fish oils
Probotic supplements
B100complex vitamin

09-01-2011, 06:34 PM   #4
Crohn's 35
Inactive Account
Join Date: Oct 2009
Yes, I take them, once in a blue moon I can skip a day or two but I have exhausted all meds in the Canadian FDA approved meds, Cimzia isnt here yet, I missed the boat on compassionate use... My doctor who has been a Gi for 50 years and does amazing colonoscopies, just asks me what I am taking lol. I tell him what dose and he just writes the script. After 20 years, I should know my body by now... I switch about because I have to "trick" my body so it doesn't become complacent and think it is going to get the better of me. Until there is a newer drug or a cure, I just keep taking them, because I have landed in the hospital way too many times!
09-01-2011, 06:45 PM   #5
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Location: Edmonton, Alberta

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As I am still fighting to get into remission I take them everyday without fail.

If I skip anything due to pill fatigue it is the supplements - the vit d, folic acid, multi vitamin, naturopathic stuff - although I do always take the Gas-x and the stool softener as I tend to get so constipated.

I do understand pill fatigue well as I have had to take thyroid medication for 15 years and occaisionally I would revolt and not take it for a few months. I take more medication than my 71 year old mother does!!
09-01-2011, 06:48 PM   #6
Crohn's 35
Inactive Account
Join Date: Oct 2009
I take more medication than my 71 year old mother does!!
I can relate, my mom is 76 and has never taken a pain pill, she may break down and take an asprin. Golly all of my sibs have a form of IBD and we are pill junkies lol. She never takes pills, only cholestyramine for cholesterol...she has nothing, how does that happen?
09-01-2011, 07:37 PM   #7
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Location: Ohio

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for me, it's just too much. it gets overwhelming, it's next to impossible to fit it all in. I'm supposed to take medications eight times a day, 4 of those being a liquid that dictates when I can eat and take all the other medications. factor in nausea and needing to take some of my painkillers... AND, I'm not fully treated. that said, I take my medications most of the time, and if I don't take some it's usually the liquid.

There are certain medications that I take every single day unless I'm just that sick or having surgery or something. If I don't, I'm sick by the end of the night. I take them all at once though in a huge handful. that's 11 pills - 4 large, 3 circular, 4 smaller. I have a horrible gag reflex. If I try to take them in multiple goes I can't so I have to try to swallow them all at once.

There is also the fact that I don't feel well so why take stuff if it doesn't seem to help? I know that they probably do help, but it's been so long I don't really remember how much.

There are many times when I see my medication in the toilet. That just frustrates me, how much am I actually absorbing?
09-01-2011, 09:01 PM   #8
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Join Date: Sep 2010
Location: Adelaide, South Australia, Australia
I'm sure many of us can relate to this blog post from a friend who is a professional writer, sorry it's hard to read in most browsers, the theme broke
09-01-2011, 09:22 PM   #9
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Location: Ogden, Utah

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I was reading a book last night that said studies have shown up to 40% of people with IBD don't adhere to their treatment regimen. Various drugs had higher adherence rates than others, but that number was quite staggering to me. Reasons for lack of adherence included things like having to take too many pills too many times a day, uncomfortable treatments such as enemas, and "feeling better".

Do you take your meds? If not, why not? This isn't a negative judgment, it's just interesting to me and I'm always interested in how we might help improve issues like this through technology/software/support structures.
I have heard of those stats before, too. So far, it seems to be a study that doesn't apply to IBD patients.

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
09-01-2011, 09:35 PM   #10
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Join Date: May 2010
Location: New South Wales, Australia
Thanks stefan. Yeah a bit hard to read but highlighting the text solved the problem.

Matt takes his tablets everyday except the days I forget to remind him.

Sarah on the other hand I'm not so sure, she says she still takes them but...

I know she takes the supplements and even in remission it's hard for her to "forget" she has Crohns due to the SBS but I do have my doubts about Imuran. In her last year of school (2009) she went of the rails a bit, so to speak, and I know she was non compliant then. I don't think it had anything to do with feeling well or forgetting and everything to do with wanting to "normal" invincible teenager...a 17 year old with Crohns is no different to a 17 year old without Crohns.

She has changed quite a bit since going to uni and has made some drastic lifestyle and diet changes. She is well and energised but the jury is still out about the Imuran.

Oh, and I hate the fact that my kids have take more medication in their short lives than I have taken in my entire life!

Dusty. xxx
Mum of 2 kids with Crohn's.
09-05-2011, 06:42 AM   #11
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Location: Grimsby, United Kingdom

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Imuran ive never had a problem with, but sometimes with pentasa / asacol as they were split into 3 or 4 times a day I would forget to take a dose (normally doubled up the dose at the end of the day)

Iron tablets, im always forgetting to take these for some reason.

predfoam. I found it hit the area affected by crohns causing loads of pain, and the stuff used to come straight out anyway, so when I was feeling up to it i'd still only have a pprox 30% success rate
09-07-2011, 12:10 PM   #12
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Location: Seattle, Washington

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Ohhh. I should be honest. I strive to be as compliant as possible. But there are times... My doc "prescribed" me VSL but I just couldn't stomach it. Ugh that stuff is awful. I'm guessing if I were still on something like Pentasa my compliance wouldn't be as good as it was on Humira. One shot every other week is a lot easier than tons of giant pills every day.
09-07-2011, 12:28 PM   #13
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Location: Grimsby, United Kingdom

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oh forgot to say that im always forgetting to order some new meds (iget them once a month). So far 3 bank holidays have made me miss some meds due to the docs being closed that monday.
09-07-2011, 12:38 PM   #14
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Location: Tennessee

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I made the mistake of rebelling against meds during my first flare. It didn't work out so well for me. I get tempted to just say 'screw it' and stop them all, but I know I don't want to deal with the fall-out from that. I haven't missed a single dose in years.
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
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09-12-2011, 06:12 PM   #15
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Location: Kaysville, Utah

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I usually take them. When I don't, it is just because I forgot to. I have never missed a dose of Humira, though.
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
09-12-2011, 07:40 PM   #16
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Location: Minnesota

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I take my meds every day, as long as I remember to. I have to say, at least once a week it seems that I forget to take my folic acid until it is time to take the next dose. However, when I was on another med (I can't remember which one) I had to take 2 pills 4 times a day, and I probably forgot to take them at least 3 or 4 doses per week. I don't intentionally stop meds though, just because I'm feeling better.
Crohn's Sucks!
10-22-2011, 08:25 PM   #17
crohnicaly stinky
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Location: annandale, Virginia
I take mine, 6 pills in the morning with suppliments and a shot every two weeks. Sometimes I forget, like anyone, soemtimes I am late and I have to take time for them, which is a pain. The first time I took Lialda I could barley swallow one, literally almost tossed my cookies once. Now I take two Lialda a fish oil a probiotic all in one swallow. lol
01-14-2012, 08:20 AM   #18
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Join Date: Apr 2010
Location: Nottingham, UK
With my memory being so bad, I do try to take my meds but forget a dose maybe once or twice a week. I split all my meds into 2 doses (even the Pentasa) because I was hopeless at remembering the lunch time dose!
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
01-14-2012, 08:33 AM   #19
Gwen pippy
Senior Member
Join Date: May 2011
Location: Ireland
25 years and I still haven't managed to get the hang of taking all my meds. I have weeks/ months when I am going great, all meds at the exact same time everyday and then BAM I get lazy or scatter headed and it's all out of the window and double BAM symptoms return sometimes minor others times more serious. I find nowadays if I miss my calcium with D3 it can effect me within a few hours but I could go without a few doses of asacolon and I'm fine. I have tried all med containers, alarms on clocks, phones and even getting people to call me but it has to be tattooed on the inside of my eyelids before I get the message.
01-14-2012, 08:53 AM   #20
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Join Date: Jan 2009
Stefan, that blog post hit the nail right on the head for me. I can relate entirely to it. I never missed a dose of Imuran, Cipro, Flagyl, Remicade (obviously), or other important meds, but when I am just on maintenance drugs (mesalamine, probiotics), it's hit or miss whether i remember to take them. Who wants the constant reminder that you will never truly be 100% "well"...
01-14-2012, 11:36 AM   #21
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Location: Reading, United Kingdom

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I usually take mine. I remember to take my aza and pentasa as I am in the rutine of taking them just before I go to bed. I only don't take them on the odd occasion when I am either so so tired I just can't face doing that one extra thing, two meds is still 7 seperate things.
Or if I need to pick up my next prescription and I'm getting low and feeling well. I try not to skip more than two days in a row.
The one I find hard is my iron as I have to take with meals. And If I don't think I have eaten enough I will not take it because I do not want the horrible stomach pain it will give me!
Diagnosed with CD March 08 at 17
Currently on:


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01-14-2012, 05:42 PM   #22
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Location: Cambridge, United Kingdom

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It is very rare that I forget to take a med, I tend the leave the boxes of tablets in a place where I know I will see them in my morning routine. I like to get them done early so if things crop up in the day I don't have the chance to then forget. I am also in the school of thought that I would prefer to be on them and PREVENT a flare rather than try and react to one that is then already creating more scar tissue.

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
01-14-2012, 09:00 PM   #23
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Location: Brisbane, Queensland, Australia

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I was ridiculously strict with taking my folic acid and MTX on the right days but then I went into remission and have become really complacent about sticking to my treatment regime. For the last few days I've been feeling a bit "flare-y" and had to go get some blood and stool work done on Friday so messing around with my meds may have kicked me out of remission Fingers crossed that it's just a coincidence and not a flare and I'm definitely going to make sure that I stick to my medication schedule from now on after this scare.
~ Nicci

"Never feel guilty for being sick and try to stop comparing yourself and your life to others. You're doing the best you can under the circumstances you have and you're doing great."

Diagnosed with Crohn's in August 2009
Medication: 20mg Methotrexate injection weekly
Supplements: Folic Acid|Vitamin D|B12|Iron Complex|Magnesium Complex|Calcium|
01-14-2012, 09:45 PM   #24
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Join Date: Feb 2010
Location: Bucks County, Pennsylvania
Honestly? I'm so scared of my medication (Imuran) I sometimes can't bear to take it. I have panic attacks over it sometimes. I'm scared of obstructing from Crohn's too, but the thought of giving myself cancer with this drug scares me even more. I ususally take it 3-4 nights a week, and the other nights I just can't. It took my doctor a year to convince me to take it at all, and when I sit and remember all his arguments I am reminded of why I caved in and agreed to it, but I'm not always able to get past my fear and actually swallow it.
01-14-2012, 10:53 PM   #25
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Join Date: May 2010
Location: Alberta
Like others, I have had a "love/hate" relationship with my meds... took them religiously as a child (inder parents watch, of course), sometimes took them during college years, depending on how rebellious I felt; went totally off them for a while after I got married, convinced I could totally treat myself with diet and holistic measures.....

Like Pen, I have been on every medication approved by the FDA in Canada (and some not-so-approved...), and was pretty sure I was going to die this last time around as I had no idea what the doctor was going to try. Well he went back to the basics - sulfasalazine and 5-ASA meds - as well as some others I was pretty sure I was told I could never be on again - and they seem to be working so far! We are monitoring blood tests religiously to make sure serum levels stay within theraputic ranges, as well as monitoring just about every vitamin and mineral level you can measure in the blood as well!!

Along with diet and exercise, I am finally starting to make a recovery. So in my case I have found that there is no one way OR the other - I need to do both.....
My Story
01-15-2012, 01:00 AM   #26
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Location: New York, New York

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stella_luna: look at the likelyhood. it still is very low like under 1%. sitting in the sun is mostly as dangerous.

I've read a lot about non complance and I had some issues with it with MTX but for everything else it's once in a blue moon. I feel like I can't complain if I'm not doing everything I can.
I actually get really angry when i know people can do more for their health and don't cause i wish i had that option
Diagnosed: Crohn's Oct '09
Extraintestinal: scleritis May '08, GERD Aug '09, ankylosing spondylitis Feb '10
Current Meds: Humira, Asacol, Dexilant, domperidone, Tramadol and a whole lot of vitamins
No more sulfasalazine, Methotrexate, Xibrom, Pred Forte and Iron
01-15-2012, 10:49 AM   #27
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Join Date: Jan 2012
Location: United Kingdom
In the 25 years I've had Crohns I think I've missed taking my meds about 5 times.
I KNOW if I don't take them then I'll suffer the consequences - just hate the fact the amount of meds keeps going up!

01-15-2012, 03:05 PM   #28
Cross-stitch gal
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Location: Vancouver, Washington

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I always take my medications. The only times I forget are if I'm working a really wierd schedule or happen to be somewhere and I'm taking my meds 3 times a day. Agree with Hexie though, my meds are really expensive!
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday

UP Support Group
01-15-2012, 03:56 PM   #29
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· Stoma
I HATE meds. But I do my darndest to take them. My body simply doesnt like any meds. I've done the diets, I've done the herbs. I've done the stoma!

I'm (i should say my body) is fighting off the effects of 100 mg of 6mp a day right now, with a WBC of 2 and a RBC of 9. I dont like meds and they dont like me! I do try to comply. I'm just not a compliant person! (or my body isnt!) To this day...I feel a failure for being ill in the first place. I feel like I let everyone and myself down, and I know it isnt rational, but there it is.

I need to behave and take what I know is correct, and when the Drs say 100 mg when I KNOW my body wont tolerate it...I need to tell em! Like all of us, we learn, me I learn the hard way.
So....50% to 65% compliant on meds...but with reason!
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
01-15-2012, 08:16 PM   #30
Forum Monitor
Join Date: Mar 2011
Location: New Brunswick

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Yep. Occasionally miss one on the weekend though and end up taking it a few hours later

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