HealingWell
Search Close Search
☰

Q - Ditched your meds? How long till flared?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/11/2008 3:07 AM (GMT 0)
help!

I recently moved and in the whole packing/unpacking headache, i misplace my meds and kept pushing off searching thru tons of packed boxes for it...and also avoiding taking them......

I realized its been 3 weeks....gulp.

when i called the pharmacy for a re-fill, they said i was outta refills and needed an Rx. My dr. will only give one with a check-up appointment, which makes sense. havent been there in 8 months. the appt is next week.

i know its normal to procrastinate taking them and ditching 'em sometimes...has this happened to you?

how long was it till you flared?

sad  

Posted 4/11/2008 11:46 AM (GMT 0)
I went off Colazal cold turkey once (I believe it was a January)...bad flare started in early March. I ended up on Imuran. That was 2 years ago.
Posted 4/11/2008 12:03 PM (GMT 0)
I once didn't take my Asacol for about 6 months. I did pretty good, I still had symptoms but not that severe. Until one day my body said "Hey wait a minute! Where is that Asacol?? Let's show her that we need that stuff!" And entered one of my most severe flares to date, I became anemic and it took a lot longer to get the flare under control. I was MISERABLE!
Posted 4/11/2008 1:14 PM (GMT 0)
I went off my meds for almost 10 years.....Didn't have many problems at all during that time. Occasional D, like maybe once a month and that was it. Then I went into my worst flare that I ever had since being dx'd. That flare lasted over 2 years. I don't think I'll try that again, I was too nervous that this time I wouldn't go back into remission.. It was great to not take any meds all that time, but I'm afraid that maybe next time I won't be able to get back into remission, so I won't risk it. I'll suck it up and take my 6 sulfasalazine and other junk each day.
Posted 4/11/2008 5:15 PM (GMT 0)

ahhhhh.....i see everyone reacts diffrently to being off meds. Im sure its a shock to the body and things like that....

i know the time between flares varies from person to person. I hop all stays well, till i get the meds next week, or tackle the mountain of boxes to find those glossy red pills.

a side question here - is it a proven fact that if going off a med, then flaring, its 1. harder to bring flar into remission and 2. the body doesnt respond to the meds in the same way as it used to?


Posted 4/11/2008 7:41 PM (GMT 0)
In response to part 2 of your question, I think maintenance and controlling flares are separate issues. As seen on this board, people have their own ways of controlling and dealing with flairs. In the past, during a flare, only large doses of prednisone worked for me, but I was able to come off steroids and colozal by drinking the antiinflammatory drink/prebiotic Haldi. And in turn, I think it helped to allow my colon to heal, and now I maintain myself with one a day. In the past, 3 weeks for me was a long time being off meds, and I wish you the best of luck in staying in remission.

-----------------------------------------------------------------------------------


yuckygut
diagnosed 1998
now off prednisone and colozal
drink 1 Haldi daily
Posted 4/11/2008 11:08 PM (GMT 0)
It's not a good idea to go off meds cold turkey due to the unpredictability of UC. From experience I know that I'm likely to flare in 3 weeks w/o med. I would urge you to pack meds 1st & accessibly whenever you're on the move. Better safe than sorry later. Take care. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)
Posted 4/11/2008 11:16 PM (GMT 0)
I stopped the Asacol one time. I flared within three months and was back on the Prednisone. I will never stop taking my meds again. I continue to be diligent.
Posted 4/12/2008 12:20 AM (GMT 0)
Got off meds in 91 soon had major flare that last years. No meds helped my flare for years. Been on meds up until
Feb of 2008 and stopped taking meds. I am taking about a half gallon a day of the natural probiotic Kefir.
Posted 4/12/2008 1:26 AM (GMT 0)
I have cut off cold turkey a few times. I eventually ended up having a flare again. Would I have flared anyway? Probably, I still have no faith in a prescription maintanence medication.
Posted 4/12/2008 8:59 AM (GMT 0)
Had 15 years with no flares after I stopped all meds. I had moved to California, was in my 20s and no insurance then, so when my meds ran out, I just waited to see what would happen. In all that time, I had just slight symptoms every couple years or so. Then a year ago, UC was back with a vengeance, worse than ever, hospitalized twice, lost 40 lbs., still dealing with this a year later. Some days not too bad, others terrible. Gained back all the weight, but have dropped a bit again lately. I wouldn't change anything, though. Was very happy to have been off meds for 15 years (they hadn't really helped all that much during the 3 years of symptoms back then anyway...)
Posted 4/12/2008 1:11 PM (GMT 0)
Sometimes with these meds, you don't see the "action behind the scenes". Meaning that it is keeping things nice, calm and quiet in there. So when you stop taking your meds and don't supplement them with anything, things start to slowly simmer in there until you are in a full blown flare. Things can present themselves while in the simmering stage as occasional pain or occasional bout of D but stops and you think hmm ok, must've been something I ate. Then the next thing you know, your flare strikes and because your body has been so long without meds, it can take longer to get under control because healing can not take place overnight. Worse the flare = harder to control.
Posted 4/12/2008 8:59 PM (GMT 0)
6 weeks from stopping AZA to mod/severe pancolitis.

Posted 4/17/2008 4:51 AM (GMT 0)
a few days after posting this i faced reality and faced the fact that my health was more important than NOT looking through my packed up moving boxes. The energy expenditure of going through many, many boxes was neglible in light of the potential health risk of not taking meds. I felt that though I may be in remission, i have no clue what stopping cold turkey would do - due to the "unpredictability of UC" as Old Hat put it.

Some good new ---- saw my GI today and he
1. decreased my meds from 8 a day to 6 a day.
2. he said its looking good over in colonville
3. told him abt this awesome site and how helpful and community minded it is - if he wants to pass it on to other patients!
Posted 4/17/2008 3:45 PM (GMT 0)
Good girl!  cool  It's much safer to try to manage the colon than to ignore it while hoping for the best. I learned that the hard way-- because my 1st gastro really didn't know much about medicating IBD over time. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

Posted 5/4/2008 7:37 AM (GMT 0)
Old Hat - thanks for your encouragement and usual dose of level-headed wisdom.
I'm so upset to hear that a gastro was unable to help you, especially when you needed it most! What happened, if you dont mind my asking?
Posted 5/4/2008 12:09 PM (GMT 0)
i went off the meds and didnt have a flare up.. and when i finally did flare up i was in the ER. then for a year i just had it normally & now i am in the worst flare i have ever had. I have had it since July and it is MAY.. medication is helping now.. so i might stick to that:)
Posted 5/4/2008 7:11 PM (GMT 0)
To everyone.....It's a good lesson to learn that meds serve a purpose...especially long-term.   I certainly would rather not be on any.  I tried, but I'm a med-lifer for sure.

Maintenance is a process that takes commitment which is't easy considering life gets in the way.. There is a long series of symptoms and time that are from remission to being in a serious flare.

Knowing when to step in rather than denying they're happening (or hoping they'll go away or justifying they're not that bad yet...been there done that) is what we all learn sooner or later. 

and to add to my constant repetition......rectal meds used to treat and then tapered to maintenance can be your best friend in the process.

quincy
✚ New Topic ✚ Reply