Drug Holiday?

[Kathryn]

Does anyone else ever just go off of their drugs?

This is my number one problem and I was curious if anyone else suffered from it. I've never liked taking medicine or vitamins every day. When I was younger they kept prescribing me drug after drug to try for my JRA and I never took any of it for long. It didn't matter if it was helping or not, I would sometimes rather suck up the pain then force drugs down my throat. To me it feels so counter-intuitive to poison my body when I feel it is already "poisoned".

When my doctor first brought up the azathioprine, I rejected it over and over again. I think it took him two months to convince me to try it in conjunction with the prednisone and Remicaide I was on at the time to help nudge me out of the flare-up and then help keep me there. Eventually, everything fell away but the azathioprine.

I think it's a horrible drug. I'm grateful for it, but I cannot stand it.

And I took myself off of it a month ago. More. Almost two months now. I can tell my body is changing, I can tell my insides are about to revolt, the little signals are there. I go to the bathroom more often, I am constantly sick to my stomach, I have horrible indigestion/heartburn/acid reflux. I'm gaining weight but I'm never hungry. There are trace amounts of blood in my stool. Those trace amounts aren't really trace anymore, they are obvious.

I am going to go back on it. Tomorrow. I promised myself and my partner I would.

But then it starts again. The weeks of nausea. Of not being able to eat. My body adjusting back to the drug.

All holidays come to an end, and I know that. I have an extremely high pain tolerance so I can push my body further than I'm told I should in these cases. Sometimes it's like the pain is worth not being on the drug. Even if it's only for small amounts of time.

Does anyone else get like this about their drug or drugs?

 

[Jennifer]

Hi and welcome to the forum!

I did as a young teenager because I didn't fully understand what was happening inside my body or what Crohn's disease really was. I almost killed myself doing that as anyone could die without proper treatment. Is your GI aware that you took yourself off the drug and for that amount of time? If not, then I'd contact them and let them know and tell them your current symptoms and ask them if simply starting the medicine again is a good idea or mainly if that's all you need to do because they may want to run some tests on you to make sure that you do get the proper treatment that you deserve.

I think by now, anyone on this forum knows that I'm a strong advocator of taking any medication that makes you feel/get better no matter the side effects (unless there's an allergy of course) and that you should not self medicate (upping or lowering doses or even stopping the drug without Dr. permission). You can always try to get a 2nd opinion from another GI if you aren't comfortable with your current one. You put your livelihood and life in danger when you self medicate.

Since there is no cure for CD or UC you need proper treatment and that includes medication that no one really wants to take, but its something we have to in order to live. I think if we could all see on a daily basis what was happening inside of us, then we'd be more likely to take care of ourselves better. Like if your arm sprouted sores all over it and started leaking some nasty ooze all over, I bet you'd get that treated.

 

[DustyKat]

How did you feel when you finally got the flare under control?

In many ways I don't feel I should be responding to this post because I don't IBD.

In some ways I understand your loathing of medication but in other ways I don't understand why you would put your body through the pain and destruction that is Crohns disease. I hate the idea that my daughter takes Imuran and she has in the last four years taken more medication than I have my entire life. My daughter had CD for at least 18 months before her diagnosis and so was untreated for that time, it culminated in emergency surgery that lead to her diagnosis but if that surgery had not occurred in that small window of opportunity she would be dead. I couldn't bear to see her go through that suffering again. I have been asked before about maintenance drugs and my response was:

~I think most would agree that Crohns is not curable at this point in time and therefore the aim is to gain remission and stay there for the optimum period of time. Roo's surgery put her straight into remission and she has stayed there but I view Crohns as a disease that is lurking and waiting to strike when the time is right so if I can regulate that response to some extent then that's what I will do. I see Imuran as a preventative medication much like Pulmicort is for an asthmatic, it stabilises your underlying condition so hopefully you can avoid or at least lessen the occurrence of a full on asthmatic attack.
Another point I think worth mentioning is while ever Roo has Imuran in her system then should the need arise to increase the dose she does not have the waiting period for the medication to start taking effect.~

I see the drugs as evil but Crohns is also evil, I just see the drugs as the lesser of the two evils.

This is off topic but it is something I often think about when I hear or read about the struggles people face when deciding on the need for medication. As adults we obviously ponder about the many factors we are faced with when presented with a drug. I guess, without thinking, that's the reason I asked the question at the beginning of this post.

A long time ago I looked after a little boy in hospital that had many congenital defects of his heart and kidneys. He was 18 months old and was not long for this world. In his short life he would be lucky to have spent 2 months at home and he carried the wisdom of one much, much older in his face. As you can imagine he was on a cocktail of medication to help ease the pain and suffering caused by the problems his failing heart and kidneys created. He didn't know what he was taking, he didn't know the potential side effects, he didn't know what chemicals or poisons he was putting into his body, he didn't know how many times a day he took the medication or the dosage. What he did know though was it made him feel better, whenever I walked into his room with the medication in a syringe to squirt into his mouth his face lit up and he would help hold the syringe and push the plunger himself. All he knew was he felt sick or better and maybe that's what we as adults need to pay more attention to.

I see no harm in helping your body to rest or heal by whatever means and if that includes medication then so be it.

Just my two cents worth,

Dusty.

 

[kslade]

I can completely sympathize with you on this. I have NEVER liked taking any medication and for me that includes anything over the counter (ie: tylenol, advil etc). I feel those medications should be used only when it's absolutely necessary. Unfortunately people use them more often than they should. In some cases, they end up developing more problems down the road, not only because of prescription pills, but because of over the counter pills. Everyone needs to understand that just because it's over the counter and you can get it without a prescription, doesn't mean that it's good for you. Their can be side affects for both prescription medication and over the counter medication. Heck, their can be side affects for eating certain foods. It doesn't matter what you put in your body, you can have a side affect to it. That's how I try to view it now. Some people eat spicy foods and get heartburn, some people take Remicade and get a headache. Now you have to decide. You can either stop eating spicy foods, take a proton pump inhibitor (Nexium etc), or take an antacid or you can suffer with the pain that it gives you, and affect not only yourself but those loved ones around you that have to see you in pain. More drastic example would be with the Remicade.

For me, it's really about deciding whether the benefit outweighs the side affects. If a medication makes you feel 10times better, but you get a headache once in awhile, well to me that's worth it. I would rather feel good 90% of the time then feel bad 90% of the time.

Like you said, I've stopped taking my medication as well. Several times. What happened? I ended up with more side affects from just stopping the medication than I did while I was on it and taking it regularly. Does it help me 100% of the time? No. But it helps me about 90% of the time, and to me that's better than 90% of the time feeling pain I have come to realize that it's just not myself I'm affecting when I'm rolling around in pain on the ground. Because of this I've decided that I want to feel as good as I can, even if that means taking some sort of medication daily.

 

[Kathryn]

I appreciate all the comments, so thank you.

At the end of the day, you're all telling me things I do know intellectually but it's also nice to know there are other people out there who sometimes struggle with making themselves take their (necessary) medications even when they know they are (necessary).

This round of drug holiday is over and I'm calling my doctor tomorrow. I am sure it will happen again sometime in the future, I've done it for years, pre-diagnosis even, but it has become much more spaced out and much less often. I figure in about thirty years, I might stop doing it entirely.

Thanks again for your responses.

-Kathryn

 

[kslade]

I appreciate all the comments, so thank you.

At the end of the day, you're all telling me things I do know intellectually but it's also nice to know there are other people out there who sometimes struggle with making themselves take their (necessary) medications even when they know they are (necessary).

This round of drug holiday is over and I'm calling my doctor tomorrow. I am sure it will happen again sometime in the future, I've done it for years, pre-diagnosis even, but it has become much more spaced out and much less often. I figure in about thirty years, I might stop doing it entirely.

Thanks again for your responses.

-Kathryn

30 years sounds like a reasonable estimate. Took me 20 years Good luck with everything. Take care!

 

[Jessica]

I did this a lot when I was first dx'd 2.5 yrs ago. I would "forget" my meds. Or try to take myself off of them the moment I started feeling better. Now I'm looking for new meds to replace the ones I have since it would mean less medication. It may be stronger, but it means I'll be putting less into my body.

I still daydream about the life of not taking pills. Hell, I still debate about taking my pills at all! But in the end I cave and swallow them all like everyone else. Because somewhere in the back of my mind, I don't want to return to that fetal position on the bed. I just remember how bad it was. That's all it takes.

<3 Hope this helps somehow. If for nothing else, but to know that you're not along in the fight.