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Do you take your medications?

Do you take your meds?

  • I ALWAYS take my medications

    Votes: 90 66.7%

  • I usually take my meds

    Votes: 34 25.2%

  • I occasionally take my meds

    Votes: 5 3.7%

  • I'm terrible about taking my meds

    Votes: 6 4.4%
  • Total voters
    135
David

David

Co-Founder
Location
Naples, Florida
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.
 
Astra

Astra

Moderator
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!
 
scottmyster

scottmyster

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.
 
C

Crohn's 35

Inactive Account
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!
 
K

kllyeve

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!!
 
C

Crohn's 35

Inactive Account
I take more medication than my 71 year old mother does!!
Click to expand...
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?
 
Carrie630

Carrie630

The Prettiest Princess
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?
 
Jessi

Jessi

Moderator
David said:
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.
Click to expand...
I have heard of those stats before, too. So far, it seems to be a study that doesn't apply to IBD patients.
 
DustyKat

DustyKat

Super Moderator
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. :ytongue:

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. :shifty-t:

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
 
rygon

rygon

Moderator
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
 
tiloah

tiloah

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.
 
rygon

rygon

Moderator
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.
 
chrisnsteph1022

chrisnsteph1022

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.
 
DougUte

DougUte

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

LindaS

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.
 
crohnicaly stinky

crohnicaly stinky

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
 
Rebecca85

Rebecca85

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!
 
G

Gwen pippy

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.
 
Cookie

Cookie

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"...
 
xX_LittleMissValentine_Xx

xX_LittleMissValentine_Xx

Moderator
Location
Reading,
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!
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
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.
 
seaofdreams

seaofdreams

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 :ybatty: 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.
 
stella_luna

stella_luna

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.
 
Silvermoon

Silvermoon

Moderator
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.....
 
outlier

outlier

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
 
Hexie

Hexie

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! :(
 
Cross-stitch gal

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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!
 
Terriernut

Terriernut

Moderator
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!
 
outlier

outlier

Terriernut: i know what you mean. sometimes i wonder what the point of all of them. or if I will ever get my life back from them
 
Mountaingem

Mountaingem

I take my religously. I stopped them for a period of 8 month, and Crohn's returned with a vengane-new complications that frightened me to the core. I guess I was scared straight!

Stella Luna-I totally can empathize with you-I sometimes have panic attacks over my Methotrexate injection, I don't know why, it just freaks me out sometimes. I used to give myself the shots and I just can't do it anymore, now my hubby gives it to me.
 
Scifimom

Scifimom

I only have one Humira injection every 15 days so yes I take my Crohns medicine religiusly. I have an alarm on my cell phone which beeps on the day of my injection at 8pm (I am usually at home by then).

But for my asthma medication I am never good at taking it. Its not that I take lots of pills or anything, its just that I have asthma for so long, I am fed up with all the inhalers.
 
FDK80

FDK80

I usually take them on time. sometimes i forget to and end up taking them all at once :D

I hate me when i do that ! :stinks:
 
S

stratford

Location
30 min train ride to London 2012
I never missed one dose of taking what i was given at the hospital.

Steroids - i kept a chart on my wall as i tapered down!
5 ASA - drugs - took up to 8 Pentasa a day
Methotrexate - took oral & injection - like steroids i kept a weekly chart
Azathioprine - took every dose until the side affects put me back in hospital.
6mp - took every dose until i knew i was heading the same way as Aza.(Only drug i stopped taking without Dr/IBD nurse advice

Everyday (just over 12 months) i take AMP capsules before breakfast.
(Thats all i take now)
 
A

adamrubin

I will never take any steroids again or any other pills that I feel affect my value of life. I have accepted anything that may happen from doing that and would rather live my life the way i want then be a prisoner to medications. just my two cents.
 
tots

tots

Location
Austin, Texas
When I was first diagnosed I took them everyday- when my "new" dr decided I didnt have CD- I didnt have the energy to fight it out. So I gave up- not the best idea. Now I am out of the hospital with a confirmed Dx again with CD. This disease needs to be respected and I WILL take my meds everyday! Although it is hard to do- kinda puts a kink in the whole- I am not really that sick kinda attitude!!

Lauren
 
L

linsey

Well to be honnest I didn't take my meds (immuran 150mg) in 4 years. After getting 4 flairups in 1 year and a lott of headaches I got bored of it. So yea not the best I guess but my doktor didn't want to give me other ones. I do take painkiller ocasionaly and a lott of vitamines, iron and some other stuff.
but yea even those I forget from time to time. XD
 
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