Stopped taking Ulcerative Colitis treatment, no problems at all

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danuc123
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Date Joined Feb 2015
Total Posts : 3
   Posted 2/12/2015 10:33 AM (GMT -7)   
I live in the UK

I've had ulcerative colitis for 8 years

Ever since I got UC, i've been taking 6 asacol tablets per day like clock work and thats it, nothing else.

I never had any problem from UC from I got it.

I abruptly stopped taking my asacol 1 month ago and I have had no problems.

Do you think it's possible it was a passing illness or should I keep taking them.

Does alchohol harm the liver, ive been told that so many asacol tablets a day over your life can cause damage similar to that of alchohol?

Post Edited (danuc123) : 2/12/2015 10:45:27 AM (GMT-7)


kazbern
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Date Joined May 2010
Total Posts : 8384
   Posted 2/12/2015 10:35 AM (GMT -7)   
You should keep taking them.

You don't have any problems now. But you probably will at some point in the future. It is the nature of this disease to randomly flare and subside. Taking the mesalamine orally and rectally provides an anti-inflammatory control to the colon, hopefully preventing flares.
*******************
52 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day) generic Colazal (9 6 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (2 tsp daily), mesalamine enema as needed. Gluten free as of 5/30/11. Scope in 8/11 found no evidence of inflammation!

danuc123
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Date Joined Feb 2015
Total Posts : 3
   Posted 2/12/2015 10:40 AM (GMT -7)   
Some jobs require a clean medical history and I wish sometimes that I did not have this UC, so that I could go
for certain jobs that require people to have no medical problems at all and if it wasn't for the tablets, I could hide this disease but I suppose it's one of those things.

Marauder93
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Date Joined Feb 2014
Total Posts : 1185
   Posted 2/12/2015 10:41 AM (GMT -7)   
That is a TERRIBLY idea. Dont get cocky. This disease will get progressively worse, especially if you are not medicated. Not only does it get worse, but it get more stubborn. If someone told me I could stay in remission by taking 50 asacol/day for the rest of my life, I would do it without even questioning it.

Dont take your healthy for granted!
Pancolitis (UC) since Sept 2009
Therapy
Anti-MAdCAM Antibody - Unknown Dose
Salofalk/5-ASA (table) - 4g
Salofalk/5-ASA (enema) - 4g
Failed Therapies
Remicade - 400 ml
Nicotine patches - 21 mg

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10822
   Posted 2/12/2015 10:41 AM (GMT -7)   
Yes, take your medications. Uc is a chronic, lifelong disease that requires medications. You shouldn't stop just because you feel well.
Moderator ulcerative colitis
M, 36, proctosigmoiditis
Rx: Remicade 5mg a kg every 8 weeks, daily 75mg 6MP, weekly Rowasa
Diet: Diet mods and supplements haven't done a thing for me
What do I think of uc: lt is a royal pain in the arse :-P

DMC2011
Veteran Member


Date Joined Jul 2011
Total Posts : 2504
   Posted 2/12/2015 10:45 AM (GMT -7)   
Omg this scares me! You dont know how lucky you are to contol it with just that med! You could end up going up the ladder of meds if you flare. Omg
Left sided dx. 2011
Current med: Apriso 8 day
6mp start 2/10
Uceris 9 mg
Cortenema
Canasa 1 as nec




Supplements: Looking into supplements now, changing plan
Diet: no lactose, low fat, no uncooked veggies, No honey or HFCS!! gluten free, no carageenan!!!

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4530
   Posted 2/12/2015 10:53 AM (GMT -7)   
I would DEFINITELY continue taking your medication as directed by your doctor. UC is a crazy disease. One minute you're fine and the next you're not. You can flare at any given time.
Marianne
DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)

quincy
Elite Member


Date Joined May 2003
Total Posts : 29771
   Posted 2/12/2015 11:07 AM (GMT -7)   
Yes alcohol is hard on your liver, worse in binge drinking.
Use common sense.

your call on the meds....you might have no problems, or you might be worse to the point of serious.

keep us posted...
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 9088
   Posted 2/12/2015 11:21 AM (GMT -7)   
Asacol is about the safest med you can take for UC. It will do no harm to your liver 99% of the time. Anyone can have a reaction to any medicine. Tylenol can damage the liver. If you're worried you can get liver function tests every so often as these tests can show if anything is effecting your liver before the damage actually occurs. It is EXTREMELY foolish to quit taking your meds. UC is forever, the Asacol keeps it tamped down. Once you remove the meds it is only a matter of time before your UC comes back and then what worked before often won't work again or work as well, causing you to have to used stronger, harsher meds. As some friendly advice I strongly urge you to begin the Asacol again before it is too late and 6 months down the road you start flaring again and you find out Asacol won't work anymore and you will be very, very sorry.
Pentasa (500mg) 2 pills X 2; VSL 1 pill X 2; Prescrip Assist Probiotic 1 pill X 2; Grape seed extract (1)400mg X 3; Vitamin D3 (1) 5,000 IU X 2; daily generic Allegra; DAO as needed due to dietary histamine intolerance

Gave me trouble: Zymactive, Renew Life Probiotic 80 billion, Florastor, high histamine foods

Tunnelvisionary
Veteran Member


Date Joined Jul 2014
Total Posts : 527
   Posted 2/12/2015 11:38 AM (GMT -7)   
My doc said about a third of patients tend to have a flare up that gets them diagnosed, it gradually goes away, and they end up in remission. I should've asked him more about this, but I didn't.

The other 2/3rds spend their time in and out of flares regularly or their disease getting to the point of needing surgery.

I think you'd be playing with fire to skip your meds because we don't know if your immune system really decided to lay off or if asacol is working well to keep your symptoms in check.

It's difficult, taking medications regularly and not really being sure why because you've been fine for years, but you'll be kicking yourself if it comes back. You never know if it may get worse and require heavier medications which is not a fun step. I complained about being on asacol back when it was working fine and I didn't realize how good things were until I flared up and required going on biologics.
Male - 22
Dx'd w/ UC on 7/14. Recovering from an eating disorder, please no major diet mod suggestions.

Currently taking: Lialda 2x, Looking into VSL probiotics. Vitamin A+D and a multivitamin.

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3916
   Posted 2/12/2015 12:14 PM (GMT -7)   
It seems using a maintenance dose like 3 tablets a day might be wise. I read some people manage on an anti-inflammatory sort of diet for maintenance and do w/o pills.

However, unless you can argue from original pathology reports that you were misdiagnosed, than omission on a job health questionnaire could be fraud. I knew a guy who did not disclose a chronic condition during the physical before we set off on an ocean research cruise. When we had to return to port early because he had a heart attack, our operational losses were insured. But the insurance company went after the guy for 1.2 million because of the fraud.
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

Guardian7
Veteran Member


Date Joined Apr 2006
Total Posts : 2682
   Posted 2/12/2015 1:27 PM (GMT -7)   
I think it depends entirely on the pathology. It's possible there was a misdiagnosis in the beginning, as there are cases of microscopic colitis that disappear. A relative of mine was told to take asacol after a GI identified small patches of inflammation in the colon, but never did. He never suffered from any further GI issues.

There was a study questioning the efficacy of 5asa medications after 3-4 years of being asymptomatic. A former doctor of mine would have weaned me off if I were asymptomatic for a duration of 5+ years. There are cases of colitis that go away (barring no FMT treatment to address the root cause), so again I would question the initial diagnosis and get another work-up done.

fruitgirl
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Date Joined Feb 2009
Total Posts : 7150
   Posted 2/12/2015 2:07 PM (GMT -7)   
I would, at the very least, have a c-scope and bloodwork done sometime very soon. If all looks good, then it's a little bit hard to argue the case that you should continue taking them. However, mesalamine does have an excellent safety profile for long-term use, and any liver issues that you're concerned about can be picked up with blood tests. I was starting to question my diagnosis a tiny bit around this time last year, as I'd been in a very solid remission for 5 years. Then I had a (very, very mild) flare. So now I'm no longer questioning it. I wasn't considering dropping my meds, though.
Symptomatic remission as of 5/2009;mild flare 5/2014, quickly resolved
Colonoscopy in 10/2011 showed no inflammation
Symptoms began in 11/2008, 4 weeks after birth of first child; diagnosed with pancolitis 1/2009.
Second child born 3/2013; no post-partum flare up.
Meds: Apriso (4 0.375 g pills daily), probiotic. Used mesalamine enemas, but seem to now be intolerant.

mcfarl73
Regular Member


Date Joined Sep 2013
Total Posts : 498
   Posted 2/12/2015 10:17 PM (GMT -7)   
My first doctor (the one who diagnosed me with UC) just told me to eat more fiber and I'd be fine. Because I wasn't on any sort of medication my UC spread to my entire colon and mesalamine made it even worse when I found out I was intolerant to it with my second doctor. I believe that the fact that I wasn't on any sort of med, mixed with my mesalamine intolerance, made my UC hard to manage and forced me into biologics. Don't get me wrong, I love remicade and it is working so well for me, but I'm scared to death of what I'm going to do when I'm no longer on my mom's insurance (which is awesome) and have to make sure my job has really good health insurance to keep covering my infusions. If asacol was working for you keep taking it! I don't know if it's like antibiotics where if you stop taking it before you should that you create a superbug that can't be treated, but I wouldn't chance it.

Also, what kind of jobs are you looking at? Because saying that a job requires no medical issues would be illegal here in the US. That's discrimination. I'd seriously question that.
Caitie, Female, 23
Diagnosed with UC in the distal sigmoid colon 2/13/13
UC spread to severe pancolitis diagnosed 10/4/13
Intolerant to mesalamines
Started remicade 10/11/13 - 5mg/kg every 8 weeks
Failed meds: Lialda, Canasa, Uceris, Imuran

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 2/13/2015 7:42 AM (GMT -7)   
UC is a chronic disease, characterized by periods of remission and flares. Taking medication helps to keep the inflammation at bay which is your best bet for staying in remission. You are risking a flare, pay attention to any change in your health and start taking the medication immediately if you notice changes.

Sue
Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

JimC24
Regular Member


Date Joined Jan 2015
Total Posts : 128
   Posted 2/13/2015 3:27 PM (GMT -7)   
danuc123 - I can relate. Was diagnossed some years ago - and thought that once the flare was under control I didn't have to take any medication. Which was okay for awhile, 6 months later I started flaring again and the doc said I needed to be on a maintenance dose of Lialda.

For at least a good year or so I only took 1 lialda a day - which some folks on here said was kind of like taking nothing at all. All I can tell you is this flare I've had since end of December was pretty bad. 6 weeks of blood and cramps/stomach pains. Like everyone says - everyone reacts different, but I'd really not suggest doing it on your own. I hate being on meds period - but until someone can find something that will help this non-medically, I think I'm stuck
Diagnosed with UC in Feb 2010; Had one flare up in Summer of 2012 - in the midst of a moderate flare up since the end of Dec/beg of Jan (bad stomach cramps have subsided, but rectal bleeding every day) Lialda increased to 4 capsules a day and 2/1 had canasa added.

- Also have substantial allergies and asthma (which for the most part is under control)

Burli
Veteran Member


Date Joined May 2003
Total Posts : 1251
   Posted 2/13/2015 9:24 PM (GMT -7)   
take the meds and, as mentioned, test for liver damage if concerned; risk is extremely low to liver
you asked about alcohol and liver damage (Google can give you information; was that a serious question)
Get another diagnosis if you question whether you have it
take the meds; your UC is likely controlled with them
you ever do get a flare and it very well be much worse requiring more powerful meds
born 1966, diag. hypoglycemic 1970; epilepsy 1982, UC 1984, lost hearing one ear in 2004, Remicade (1/10weeks), Imuran 50 mg/day, Apriso, oxycodone 40mg/day: stops urgency (halts it immediately, now 1 bm/day!), diazepam 5-15mg/day whenever taking prednisone (now rarely); Xanax stops simple partial seizures; carbatrol XR prevents grand mal seizures

Plato8
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Date Joined Aug 2009
Total Posts : 9
   Posted 11/9/2017 4:18 AM (GMT -7)   
I've been on sulfasalazine since weaning off prednisolone following Dx of severe pancolitis in 2006 (misdiagnosed as IBS some years earlier - until developing complications, somehow I lived with it untreated for that long). That's the only maintenance med I've taken. Despite having an untreated episode of the disease for 6+ years, I have never had a flare-up since getting a correct Dx 11 years ago and starting treatment, and sometimes I wonder if the Dx was "correct" (I know it probably is; just I don't seem to fit the 'text book' description of UC). I know first-hand how serious UC can be, as I was critically ill soon after being diagnosed (had a minor stroke, a cerebral venous thrombosis, a week after starting treatment with prednisolone - it can be a v. rare complication of corticosteroid treatment).

I know it's not a sensible thing to do... but there have been a couple of episodes where I've gone off the meds for weeks at a time, and I've never had a relapse. The first time, about 6 years ago, I went off them for about 5 weeks. I had some minor 'urgency' return, but no increase in frequency of BM's or other symptoms. More-recently I stopped taking them for about 6 weeks and the only symptom I seem to have had is an increase in flatulence. But I'm taking them again. I never intended to stop altogether; it has been a minor 'experiment' of mine, I guess, when I'm in between scripts. I've never had a problem after re-starting the meds. I'm not downplaying the importance of adhering to your medications, but am just posting my experience - I'm sure some people probably couldn't go a week without their meds without causing a flare-up; everyone's physiology is different. During those periods, I continued to take aspirin as stroke prevention (as I have done for 11 years).

Interesting to read an earlier post that one doc said about a third of patients don't have an ongoing problem/flare-ups. I wasn't aware it would be that many (if that figure is correct).

Post Edited (Plato8) : 11/9/2017 4:31:52 AM (GMT-7)


MitzMN
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Date Joined Feb 2007
Total Posts : 620
   Posted 11/9/2017 5:26 PM (GMT -7)   
My insurance took Asacol off their formulary and I went off of it about 9 months ago. I am not having a flare per se, but I am not functioning at all like I was. I am fortunate enough to have not had a flare for probably 8 years. The only way I knew I had UC was because of my meds and because I saw a gastro doc and had colonoscopies. I'm also on Imuran.

I can't tell you how teed off I am at my insurance company for doing this to me, the insurance company who also increased my premiums this year from $635 in 2016 to $1049 this year.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10822
   Posted 11/10/2017 6:58 AM (GMT -7)   
UC is likely an autoimmune or at least an immune deficiency. So, your immune system is attacking your large intestine and causing inflammation, an attack that does not rest/sleep and is continuous. Your medication, sulfasalazine, is anti-inflammatory in affect. While you are taking your medications, you experience no side effects.

If you stop your medications, you might be able to get by for a little while before you start seeing flare symptoms return (a few days, weeks, or months) but it will catch back up with you. It's a gamble. It seems there is a tipping point of a certain amount of inflammation, then our symptoms are visible. Our body can handle small amounts of inflammation without us noticing it. You get to a point though where the flood gates open and you have yourself a bloody mess to content with, a full blown flare. It's a common rookie mistake to stop your medications when you are feeling well.

There are consequences to said action.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Urgency Roused "Oh the places I've pooed from culverts to shady bathrooms" the memoirs of a UC patient. Run, don't walk, to you local bookstore...

Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 317
   Posted 11/10/2017 12:14 PM (GMT -7)   
To be fair, there are some people who have symptomatic UC for a period in their lives, and then it's never an issue again after that. You may be one of those people, but I would have a doctor confirm that if I was you. Sometimes we think the UC has stopped but really it has just gone silent yet is still doing damage.

It's generally believed that the intestinal histology (cell formation) involved in UC never changes back, so you "always have it" on a cell level. To me, if you've been in remission forever, you are effectively cured regardless of what the cells look like.

Either way, it's too soon for you to draw such conclusions.
DX left-sided UC 2015, 3 severe flares since then lasting 2-4 months each
Diagnosed with mycobacterium avium paratuberculosis (MAP) September 2017
Commencing triple antibiotic therapy (rifabutin, clarithromycin, clofazimine) November 1 2017
Taking: prednisone 10mg (tapering), Entyvio every 4 weeks, Low Dose Naltrexone 3mg at bedtime, Nutribiotic Citricidal 2 tablets 4x daily, natural ferment

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15235
   Posted 11/10/2017 1:37 PM (GMT -7)   
Connor77 said...
To be fair, there are some people who have symptomatic UC for a period in their lives, and then it's never an issue again after that. /quote]

Really? I would think those people were misdiagnosed and actually had colitis.

This post is really old. Hopefully the OP is still symptom free and out living life.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Plato8
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 11/13/2017 5:26 AM (GMT -7)   
iPoop said...
You get to a point though where the flood gates open and you have yourself a bloody mess to content with, a full blown flare. It's a common rookie mistake to stop your medications when you are feeling well.


Not sure if your 'rookie' comment was directed at me, but I don't consider myself a 'rookie' with UC given I've had it now for nearly 18 years; albeit misdiagnosed for the first 6 and half. As for a "bloody mess", one of the reasons I suspect I was misdiagnosed was that I wasn't passing (visible) blood - had a stool sample test done when I first became ill and that didn't detect any blood, either. I had a handful of instances where I was passing visible blood during the misdiagnosed years, but it was only after straining badly, and I put it down to that.

Unlike some other people here, diet has no effect on my UC symptoms, either. I can eat what I want and it makes no difference, thankfully.

Plato8
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 11/13/2017 5:28 AM (GMT -7)   
Connor77 said...
To be fair, there are some people who have symptomatic UC for a period in their lives, and then it's never an issue again after that. You may be one of those people, but I would have a doctor confirm that if I was you. Sometimes we think the UC has stopped but really it has just gone silent yet is still doing damage.

It's generally believed that the intestinal histology (cell formation) involved in UC never changes back, so you "always have it" on a cell level. To me, if you've been in remission forever, you are effectively cured regardless of what the cells look like.


My colonoscopy reports always say 'quiescent colitis', which I assume to mean 'we know you have it, but there is no major evidence of it currently'.

The first gastroenterologist I saw (he has since moved on to academia) told me initially, "You *will* have flare-ups." I don't want to tempt fate, but 11+ years later, it hasn't happened yet - which I am of course very thankful for/lucky, I know.

Post Edited (Plato8) : 11/13/2017 5:31:51 AM (GMT-7)


London Lurker
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Date Joined Feb 2013
Total Posts : 1045
   Posted 11/13/2017 2:03 PM (GMT -7)   
You should discuss with your doctor that you have discontinued. You may flare in the next few months or you may not but you are taking a risk. Hopefully they'll agree to regularly monitor your fecal calprotectin so you can get on top of any inflammation quickly if it restarts.

Some people can get kidney and liver problems after long term use, that's why you should be tested yearly (via blood tests) but my gastros have always insisted that the risk is lower than the risk of bowel cancer from uncontrolled inflammation.

UK usually advise a colonoscopy 10 yrs after first diagnosis, don't ignore getting that done even if you have dropped off the radar with your medical team.
Proctitis '84
Pan Colitis '88
Many well years between flares, some yrs no meds
Helped by raw sauerkraut
Mezavant XL x 2 day
March '13 pseudomembraneous colitis (treated by Flagyl)
Harder since then. 2 courses Pred, intolerant to Aza & 6mp
Oct '15 Entyvio, near remission then failure 8 months in
Aug 16 Rescued by Cyclosporin Oral - endoscopic remission after 6 months...
Apr 17 Discontinued cyclo
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