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How long can you go wihtout meds?

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Posted 2/15/2009 12:55 PM (GMT 0)
I will make this quick...

I was on Humira for just over a year...   It was the worst year of my life.   I was sooo tired, etc....    

I got fed up, and stopped taking anything.

I have not been on any Crohns meds since December.

I feel better than I have in years.

My question to my crohnies.......    Has anybody else gone "med free"?   If so, how long has it lasted?

Posted 2/15/2009 3:07 PM (GMT 0)
If I even forget to take my pills I get symptoms... I would be worried about this approach myself. It's your body and you have to do what is right for you, but you may find that if you don't treat it it could come back with a vengence... Have you talked with a Dr. about it? If you are doing well without the Humira you could be in remission and maybe you just need a maintenance med to keep you there, one that doesn't give you the side effects that Humira does???

Good luck and I hope you keep feeling great!
Posted 2/15/2009 5:22 PM (GMT 0)
This seems to be different with every person, but I know my sister was able to do this for 2 years, but then she had to get a foot of her intestine removed. The drugs dont do alot when you are not flaring, but they help to minimalize the effects of a flare up when they do occur. Sounds like you need to find the right drug, for me, the past 6 years, it has been pentasa, before that, it was asacol. You need to try different ones instead of just avoiding them, as they seem to keep me somewhere in the middle of healthy and always in pain.
Posted 2/15/2009 8:36 PM (GMT 0)
I am happy you are off your meds and feeling fine!! I was cut in 96 with diagnonsense of Crohns and put on meds like pentasssa ,salofaulk ,bla bla ,,and like you SICK SICK all the time in the hospital almost every second month for years....Fed up I took myself off all meds and for 8 years YES 8YEARS symptom, pain and hospital free....the last year has been rough though .. I have been hospitalized 3 times and on prednisone almost all year GAWD:( They put me on Imuran,,,HECK NO!!! I dont think soooo!!! not me !! I was on it for 2 weeks and it just wasnt right I wasnt feeling "right"...and when my levels were checked they were through the roof, my doctor said to stay on and we will continue to check the levels and if they do not subside we will try a diffrent route...NOPE!! i cut the Imuran that day and researched it YUCK ( like use cronnies dont have enough health problems)...
So needless to say I am weening off the prednisone 15mg.and thats it...... I am feeling great...Eating is the most important thing for us. as well as getting to know the voice of our bodies. .....okok....whats working for me?........have you heard of the Acid Alkaline way of eating?....It works wonders for me!!!!! and it has helped me seriously.80%alkaline 20% acid....look it up friend it will make so much sense to you...try it and you will see that we are able to heal ourselves. Also, slippery elm has some lovely healing effects when you are starting a flare , its a bark powder that helps sweling and inflamation..check that out too.....I AM SOO HAPPY FOR YOU...take care of yourself
Posted 2/16/2009 1:16 AM (GMT 0)
Thanks Aunty for understanding!

I have been on all of those meds, including Imuran....   (Killed my immune system)

I am still very tired, but feel a helluva lot better than I did when I was medicated.

Thanks for the tips!

Posted 2/16/2009 1:58 AM (GMT 0)
My daughter is about to start taking Imuran. Our GI has alot of confidence in this medication, and says that about 85% of her patients that use it, tolerate it well. What were the negative experiences talked about here? 
Posted 2/16/2009 2:51 AM (GMT 0)
I used to take Imuran. It helped heal my fistulas, but that was about it. I still had flares, and even an obstruction. When I took 50mg, I felt fine. When I took 100mg (what my doctor prescribed), I felt terrible. I was nauseous and slept excessively. My doctor didn't seem to care, and said to take it anyway. So I dropped it down to 75mg on my own. The side effects were more tolerable at that amount, and if I went any lower, my fistulas would flare up.

Once I started Humira, I dropped the Imuran completely. I also started eating SCD, which finished healing up my fistulas.
Posted 2/16/2009 2:57 AM (GMT 0)
Imuran can cause acute pancreatitis. It can cause bone marrow suppression, meaning your white and red cell counts can crash. It can also cause nausea and fatigue.
Posted 2/16/2009 6:13 AM (GMT 0)
i made it about 6 months without meds. was probably one of the biggest mistakes of my life because I can't get this flare under control now and i have been sick non stop, hospitalized twice since september. don't think that because you have it under control with meds at one point... that the same meds will work the second time.

Vin
Posted 2/16/2009 8:29 AM (GMT 0)
I've pretty much been med free for my 18yrs of having CD other than the odd time I've been on pred (which no longer works for me) mainly because I'm either allergic or intolerant to traditional oral RX so I use naturals but I've only been using them for about the last 4ish yrs now...I will say that over the yrs of CD I've leaned more towards severe-moderate with disease activity.

:)
Posted 2/17/2009 1:18 AM (GMT 0)
I have been off of meds since Oct 2007; symptom free. I am gluten free and dairy free and tend to abide by the Acid Alkaline diet as well, but I do include fish, egg whites, and chicken.  I have also been running 5-6 days a week and compete in half marathons.  ....the last week though, the bowels have been talking back....loudly, so I am going to go to go low fibre/low residue.  Using hydrotherapy has broken the low-grade night sweats and allow me to sleep well.  I guess, we will see how she goes

Posted 2/17/2009 4:31 AM (GMT 0)
Melissa, What is hydrotherapy? what do you mean by" low residue"? What kind of foods does that mean? Wish I could run a marathon again. I find running really hard. I keep hoping something good like that would happen to me. Thanks for any enlightenment you can give me.
Posted 2/17/2009 5:45 AM (GMT 0)
I stay on Asacol as a maintenance medication. I don't do well medication free completely.

I wasn't on treatment for many years (took a long time to get diagnosed), and it was quiet for some of those. I didn't realize a storm was brewing inside. So I'd worry, even if I was feeling well, what might be going on inside.

Posted 2/17/2009 12:25 PM (GMT 0)

I absolutely cannot go med free, I have episodic infliximabs maintained with methotrexate (25mg tablets weekly) this kept me in remission for 5 years - the only blip I had was after I'd been in remission for 2 years so they decided to take me off the methotrexate which sent me straight into a flare up so went straight back on it.

Now for the last year I have been having flare ups and I firmly believe one factor is that I'm not absorbing my methotrexate properly anymore, which makes a lot of sense - I don't get side effects anymore, I never get ill from anything and I used to get a throat infection every 2 months without fail for 5 years, I also have malabsorption issues so if I'm not absorbing nutrients theres a good chance I'm not absorbing my meds either, finally my doctors have agreed I may be right (one thing that does my head in about seeing doctors at the moment is you don't get a consultation you get a darn drugs pitch, right now they're trying to switch everyone to humira - I was there when the drug rep came in to talk to the doc, they obviously have a good deal going with each other, now they've realised my health isn't for sale they're finally listening!) and after my next infliximab I'm switching to the injection form of methotrexate to see if that helps.

Even though I had to put up with side effects 1 day a week plus infections I'd take that anyday over a flare up, if just not absorbing it properly is causing me this many issues I'd never risk going med-free - I enjoy remission too much!

Posted 2/17/2009 2:44 PM (GMT 0)
Hi guys,

Well i had severe crohns for about 6/7 years to the point where i had no control of my intestines - i'm sure you all know what i mean by that. It was living hell so when they finally diagnosed it as crohn's i had surgery. I had alot of my terminal ileum removed and also the ileocecal valve.
I didn't think it had worked as i was having bile related D. Then i tried Questran and i was back to almost normal within a few months. It's been 10 yrs now and i still just take 1 sachet of Questran everyday. I get B12 injections every 3 months and that's it. I'm pretty sure i have IBS on top of this but they're the only symptoms i have now - bloating and stress related D. The bloating is bad but it's nothing compared to the awful crohns symptoms i used to have. Actually i find the following help alot with my IBS - Probiotics & I try not to eat bread, processed foods or red meat and i keep my fruit intake up as much as possible.
I'm not saying surgery is the answer but i think if symptoms are bad enough, surgery should be discussed and considered as a real option. And i believe that post surgery, it's very important to listen to your bodies needs, have a positive attitude (ie. tell yourself you're gonna get better, don't give in to negative thoughts) exercise moderately, try to keep away from the bad stuff - processed foods and fizzy drinks etc. and you'll be helping yourself along the road to an easier recovery. I also taught myself to relax and stop sweating the small stuff - as i know for a fact this was causing alot of my symptoms in the first place.
That's just my personal experience, but i am glad i had my surgery, i've had neumerous tests recently to make sure the crohn's was not back and thankfully - it's not. 10 years later i'm still fighting fit. I know i am a very lucky person and i thank God every day for it.

Good luck with your decision
Lila
Posted 2/21/2009 1:02 AM (GMT 0)
Hey,

 Well, I'm 20 years old, and before when I first got diagnosed, I was put on prednisone, pentasa, 6mp, and a couple other medications.
Finally, I was just on 6mp, but it made me SO tired. One day I dumped all my medication down the tiolet, notified my doctor, and was ok for about 2 years. I felt GREAT! But...Currently, I'm having a flare up, and have an appt with my doctor on the 3rd, which he will probably want me to be on medication again.

So, an answer to your question...

I guess a person can go without medication...it just varies how long it may be before you have another flare up, depending on your lifestyle. I think a lot of hours at my job triggered it.. it was a lot of physical work.  It all depends on what feels right for you, but if you have any signs of flaring, your body is trying to tell you that you can't do it on its own anymore.

Hope I helped!

 

Posted 2/21/2009 2:23 AM (GMT 0)
My Doctor was kind enough to monitor me for inflammation when I went Med free and followed the SCD. This DD can wreak havoc on your immune system and GI tract with inflammation and little to no pain,with few symptoms in some cases. So, in short see if your Doctor, or another Doctor will help you with your med free lifestyle, so you can watch for any damage, in case you need to change your course of treatment. I would rather be on meds to prevent damage than have surgery I might have avoided. Sometimes D.O.'s are better acquainted with nutritional information, and Med free ideas for healing. I was blessed to find a D.O. who was a board certified GI Doc, and was also followed up by a MD at the local University who was aware of my treatment goals to go med free. Someone I would have turned to if I had needed surgery.
Posted 2/21/2009 3:58 PM (GMT 0)
i stopped all my medication for about 3 months, because i was gettin side effects from everything i tried,felt really good. but now back on pred, due to flare. i think my flare came about due to stress. once i finish with pred, im gonna have to find something i can cope with...cant deal with another flare.
Posted 2/22/2009 6:40 AM (GMT 0)
Stopped my meds April 2008 and started my current bad flare July 2008. My flare is still not under control and I have been hospitalized about 7 times since my flare. Be careful, I got off meds because of SE's but wish I listened to my MD and rechallenged the Humira. Now I am totally miserable and cannot work due to the severity of my flare. However, this is case specific and I knew I was taking a risk when the Humira was stoppped due to shingles.
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