I've decided to stop all my medication

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UC21
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Date Joined Oct 2009
Total Posts : 68
   Posted 1/13/2010 7:45 PM (GMT -7)   
It doesn't work.... I don't see the point.


-The End

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 1/13/2010 8:12 PM (GMT -7)   
there are other ways to reduce stress. ...with your choice youmight want to get to know a good surgeon. If I had the chance to 'do it over' i would have tried the MAP medication antibiotics just to see if they worked.

CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 1/13/2010 8:22 PM (GMT -7)   
Not sure where you were taking, but I hope not anything that needs to be tapered. My NP had me suddenly stop Entocort and I flared like no other.
500 mg of Pentasa 4 times a day, 1 Florastor 2 times a day, 2 mg LDN at bed time, 1400 IU Vitamin D3

Prior medication until LDN:100 mg Imuran a day - GI wanted 150 mg, but I didn't want to destroy my liver, 1 Gram of Pentasa 4 times a day, 3 mg of Entocort 3 times a day, Librax as needed

AKA:Chronnieman


FunGuy
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Date Joined Oct 2009
Total Posts : 1070
   Posted 1/13/2010 10:04 PM (GMT -7)   
Kinda drastic? Slow down and think it through.


 


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 1/14/2010 5:48 AM (GMT -7)   
UC21,
 
Let me start by saying...been there done that.  When I was in my late teens, early 20's  I felt so much better I said why do I need the drugs.  They aren't doing anything to me.  So I stopped them for many years.  I now regret it.
 
I am in a bad flare now and nothing is touching me.  In fact I am having bad reactions to every drug out there.  Looking back..I think stopping all drugs was a bad thing.  Ther CD wasn't cured and who knows what damage I have done by not taking meds for all those years.  I probably let my body build an immunity to some of the drugs which is why they no longer work.
 
With all that said..I am sure you are feeling frustrated and depressed.  That is completely normal.  Now you have to figure out why it isn't working and find one that does.  I have been looking for a drug that works for a good 4 years now.  I just started Remicade and now that isn't working either.  Do I feel angry..Hell yes.  Am I frustrated and depressed about it...of course.  But I know that I will never ever ever let CD beat me.  If nothing out there works...then maybe something being tested now will.  My doc might up the dose of Remicade.  If that doesn't work..I will go to a clinical trial and try something brand new.  One day something will work.
 
Hang in there.  It is a rough road but just get yourself an SUV and drive down it. :-)   We are here to listen to you.    Also..what meds don't work for you and what have you tried so far?
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 1/14/2010 6:43 AM (GMT -7)   
What medications are you on? Some can take 3 months to build up in your system and start working. Also I find that even after a flare has ended and the inflammation has subsided I can still feel poorly for a while as it takes your body a while to heal and recover energy etc but it doesn't mean that the Crohns isn't under control.
 
 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/14/2010 6:58 AM (GMT -7)   
I can understand where you are coming from. I've been on them all and none, other then steroids, help me. It's kind of hard to know - if they don't help but they carry a risk. Well ... Let's just say I'm close to your point. (except I can't stop rectal cause they do make a difference). I'm starting (again) to consider an ostomy. Dnt know where yours is located , but have you spoken to a surgeon?

Ps you are going to talk to your GI first right? Make a well-thought-out decision. As opposed to an emotional reaction. Might be the same result but you'll go forward knowing it was the best choice you could make with a doc/surgeon consultation, I mean.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09

Post Edited (sr5599) : 1/14/2010 7:03:17 AM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/14/2010 7:12 AM (GMT -7)   
Well I thought I didn't need or want to take meds once too, ended up being the worst decision I made. I ended up with 2 resections within 3 years and it has taken me almost 5 years to get back to good health. While you are busy trying to get on with your life without meds, the disease is still in there doing its damage on a microscopic level until you eventually wind up being very very sick. And once this happens because of your stubborness, it takes even longer to get the disease back under control. I hope you seriously get with your doctor and discuss the best meds for you. If you are unhappy with your doctor, then get another opinion. But this disease can do too much damage if not properly treated. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 1/14/2010 7:45 AM (GMT -7)   
Hi, UC, I came off all medication 16 years ago thinking whats the point it was like taking a tablet for a headache that wasn't there. but the crohns finally caught back up with me in sept 08 and i went through absoulte hell ended up needing surgery and given a temp stoma and going through all that because i thought i knew better I will never go off medication again i have learnt my lesson the really hard way and never want to go back down the road i did last year please think this through carefully wishing you all the best Bev x
Diagnosed at 13 now 43
Reversal of temp stoma scheduled 27th Jan 10 :-)
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

Never be afraid to try something new;
remember amateurs built the ark, professionals built the Titanic.


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 1/14/2010 9:49 AM (GMT -7)   
I didn't think a lot of my medication was working either....so I stopped taking it and a few months later I was in the ER having an emergency resection...haven't been the same since..I WISH I would have stayed on my meds.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

Crohnie4Life
Regular Member


Date Joined Jan 2010
Total Posts : 69
   Posted 1/14/2010 6:18 PM (GMT -7)   
Same thing. I was convinced my meds weren't working so I went off them. Yeah, I landed in the hospital for stretch. Then after the hospital I had severe depression from the stopping of the prednisone. Not good. Try to stay on your meds and look for another solution.

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 1/14/2010 6:23 PM (GMT -7)   
i'm not a big fan of meds, having been on basically everything for over 14 years with no real relief, but dude, you gotta have a plan of action if you are going to do this. this sounds super silly - something you're doing out of frustration and not well conceived. when i stopped, i wasnt on much and i was feeling fantastic, for the first time ever symptom free, and i attribute that to the diet i was on for a year. since i stopped i have stuck to the diet very religiously and have educated myself more both on the disease and how to control it holistically, which for me is working right now, and hopefully will continue to. but my point being, using myself as the example, i felt good when i stopped and did it as a test to see what would happen and i was in touch with multiple docs who knew what i was doing. it was well thought out over a few months. meds can help, especially with symptoms. take some time to think about it dude. there is no hurry to do anything rash.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 1/14/2010 8:38 PM (GMT -7)   
Daughter went off meds when she was 20, now 6 yrs later she is still doing fine. Everyone is different. Discuss this with your GI , your significant other and take your time. Take care.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 1/15/2010 6:52 PM (GMT -7)   
My doctors took me off Crohns medications. I feel great. The meds weren't helping and were likely harming so the doctor saw no point in keeping on them.
Jodi

Crohns and the symptoms Hereditary Angioedema but not the diagnosis


UC21
Regular Member


Date Joined Oct 2009
Total Posts : 68
   Posted 1/15/2010 10:29 PM (GMT -7)   
Ugh..... After a great day yesterday I had a major setback today....

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/15/2010 10:55 PM (GMT -7)   
Just wondering, how long were you on your medication, and which medication were you taking?? If you don't feel comfortable answering then I definitely understand. I do hope some of the caution given by other members is noted, however. Everyone is different, but it can't hurt to listen to all sides.

I just hope that if this is your ultimate decision, you will make sure to work with your doctor. Do not do this alone.
Diagnosed with Crohn's in May of 2008.
Currently taking for Crohn's: Pentasa, omeprazole, Loestrin birth control, and Align probiotics.
Also taking Amitryptaline, hydroxizine, prosed DS, and hydrocodone for Interstitial cystitis.
I do keep a blog of my experiences and mishaps with these diseases. See profile :)
"He who has a why to live for can bear with almost any how."


UC21
Regular Member


Date Joined Oct 2009
Total Posts : 68
   Posted 1/15/2010 11:01 PM (GMT -7)   
I was taking an antibiotic called Flagyl (sp) a probiotic called align and Citrucel Fiber Supplment

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 1/16/2010 6:00 AM (GMT -7)   
Hi UC, hope you are feeling better today, how long have you been on Flagyl? (I hate that Antibiotic made me feel so ill) this could be whats contributing to you having a set back. Bev x
Diagnosed at 13 now 43
Reversal of temp stoma scheduled 27th Jan 10 :-)
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

Never be afraid to try something new;
remember amateurs built the ark, professionals built the Titanic.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/16/2010 7:17 AM (GMT -7)   
I agree with Bev, the Flagyl could be upsetting the apple cart as we say. Maybe talking to your doc about Cipro, it doesn't make me as nauseous as Flagyl does. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 1/17/2010 9:24 AM (GMT -7)   
I was once put on Flagyl - just for 2 weeks to establish if I was flaring or had a stomach infection and it made my symptoms so much worse! As soon as I was off it I felt loads better, it might be worth speaking to your doc either about a different antibiotic or a different type of med.
 
 

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