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Going off meds - advice needed

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Posted 1/10/2018 9:53 AM (GMT -8)
Hi, I've been a lurker since Jan 2015, when I was diagnosed with UC. I got a lot of good information and advice from this forum which helped me immensely. Thank you all for that!

I've been in remission since June of 2015, helped mostly by the Mesalamine enemas which none of my doctors suggested, but I requested after reading about them on this forum. It made a huge difference and got me feeling better almost immediately.

Since remission, I got off the steroids but my doctor asked me to stay on Apriso (4 per day) and twice weekly enemas. I cut down to 3 Aprisos four months ago, and stopped the enemas, with no difference shown. Last month I was due for a screening colonoscopy which my doctor did, and he was happy to report that my entire colon looked great and if he hadn't seen my colon when I was actively sick, he would have never known I had colitis. He asked that I stay on the Apriso basically forever. I do feel the meds make me fatigued, which he said in the past could also be my illness, but now that there are no signs for a year and a half, I'd really like to stop the meds.

I'd love some honest feedback - obviously I don't want to sick again, but I also want to regain the energy I had before the illness and the meds. Anyone in a similar situation that has successfully stopped the meds and stayed healthy? If I felt at all I'll I would restart the enemas and pills immediately.

Just for background, my UC was pretty out of control when it started, with 15 or more BMs per day, blood, mucus, the whole bit. Mesalamine, 40 mg steroid didn't do much at all, but enemas helped immediately. I took Imuran but felt really sick on it and my liver didn't like it at all. Now BM once per day, normal, no stomach discomfort at all, just fatigued. I've had numerous tests, all normal and I really feel the meds are making me tired.
Posted 1/10/2018 10:29 AM (GMT -8)
"Going off meds - advice needed" The best advice I can give you is to NOT stop your meds. UC is likely caused by our immune system (either autoimmune or at least an immune deficiency), so your UC never truly goes away for good. Inflammation builds up slowly over time until we reach a tipping point and then flare symptoms become evident. You are more likely to flare more severely without medications, and you might then necessitate much stronger medications to control your UC from that point forward. For that reason, I suggest you stay on your Apriso and you're quite lucky to have such a mild medication work well for you! Apriso is a 90% topical, mild anti-inflammatory medication that is well tolerated by most without side effects. The majority of us do need a maintenance medication for life, and we take them when we feel well and when we feel badly. Those who stay compliant with their medications have the longest remissions, least frequent and mild flares, which gives the best quality of life.

Fatigue is something that hits us all to varying degrees, with or without UC medications. More likely than not, the fatigue is caused by UC itself. Have you had any recent bloodwork to see if you are anemic (have low blood-iron levels)? I ask as that can cause chronic fatigue.
Posted 1/10/2018 11:03 AM (GMT -8)
UC is rather like childbirth.

Giving birth is painful, but you forget about it almost immediately. That is natures way of making you cope with the pain.

UC at its very worst is like your worst nightmare come true...but once in remission, you forget all about it over time.

I think stopping your meds is asking for trouble, most people that do that wish they hadn't (myself included)

Why not ask for a different mesalamine, there are a few, and you may do better with regard to energy on another one.

I would think about that as I am sure your GI would be able to accommodate you.
Posted 1/10/2018 11:09 AM (GMT -8)
Did you have biopsies done? And what did pathology state?

You miss the point of using the meds you have been on. If you've been a lurker, you will know the importance....especially first tier 5ASA full coverage and maintenance.

One thing you will clearly ignore is the mildest symptoms of change as a flare. I suspect you will wait till more intense and obvious symptoms.....and treat too late. The purpose of 5ASA meds is continual and preventayive, not like using steroid or antibiotics, etc.

Keep us posted on your life with UC.....while you may be one who has minimal flares, I can only express concern of your choice based on my long-term success.

I suggest you change your strategy and question the reasons you believe you will be able to treat it like a minor issue.

q
Posted 1/10/2018 12:14 PM (GMT -8)
Just taper to a lower maintenance dose. That is standard practice.

IF you have persistent fatigue, you can revisit finding another maintenance regimen. Some have managed with anti-inflammatory supplements.

good luck
Posted 1/10/2018 4:14 PM (GMT -8)
Doubt there are any studies for people who stop meds, especially long term studies, so you'd be on your own. That's one of my normal places to be ha.

I honestly think I could stop my oral RX meds while keeping what does work for me, diet modification, plus using mesalamine enemas when trouble pops up (none used in 1.5 years). But I won't stop oral meds because unlike you I have no fatigue or any other side effects from RX. I take Balsalazide which I doubt does much because until diet mod. got successful for me oral RX wasn't helping at all.

I agree with DB w/UC, go to a lower dose or switch to a diff. med to eliminate the fatigue.
If you have no luck there and your quality of life is poor then sure go med-free and take the risk, you are a grown-up with free will. I always ask "what's the worst that can happen" and do what my heart/gut tells me is right for me.
Posted 1/10/2018 4:37 PM (GMT -8)
if i was in your situation, i'd probably go off the meds -

but doing crazy crap is what i've done my whole life -

if you were one of the folks who (like me) just didn't want to be on meds, then i would suggest a change in thinking - but you have what i consider a legitimate reason for stopping -

just have a solid plan in place -

but i also agree with trying a different mesalamine if it's available to you -
Posted 1/11/2018 1:29 AM (GMT -8)
As a counterpoint to TroubledTurds, I am in your situation and I am happily staying on Balsalazide (similar to Apriso) as it's basically a topical medication and seems unlikely to me to be the cause of your fatigue. I also think iPoop has a good point, which is whatever drove your inflammation in the first place may well still be there (although I don't agree with him that it's just your immune system--I think dysbiosis is the driver of UC and the cause of the immune response, but who the heck knows). I'd wonder if the fatigue was a sign of residual low level inflammation, actually--it's my first sign something is off. I was in clinical remission, but still had symptoms, which isn't an unusual occurrence with UC actually.

That said, your overall mental wellbeing is also important and for many the thought and feeling of taking medication for the rest of their lives is a depressing/upsetting/unsettling/unpleasant feeling and those feelings absolutely matter. It's your health and you have to be comfortable with your long term approach to it.
Posted 1/11/2018 6:56 AM (GMT -8)
I was diagnosed with colitis( Crohn's/indermined) in 2010 with just one patch in sigmoid colon. Only symptoms were blood and couple of bowel movements. Doctor gave me 3 weeks of 30/20/10 mg of prednisone. Brought me good remission and asked me to stay on Asacol 9/day.

I was doing well for 2 years and decided slowly stoping Asacol. After 6 or 9 months, I was in worst flare. Took prednisone for 1 year to bring it to remission. Got on 6mp 75/day and 4.8 gram Delzicol/day. Finally got in remission but long use of prednisone brought on diabetes and osteopenia.

So if you have definite diagnosis of UC and if Mesalamine can keep you in remission, I would advice not to stop it. It is the safest medicine. It works topically and does not go in blood. If you flare next time, it may not work and you might have to go on next step on medicine ladder.

you have to think that people have to be on blood pressure or diabetes medication for life and this is similar to those conditions.
Posted 1/11/2018 8:35 AM (GMT -8)
"you have to think that people have to be on blood pressure or diabetes medication for life and this is similar to those conditions."

just as a counterpoint >

my DX was pancolitis - eventually my choice was to leave the meds behind and treat my UC via diet modification -

one year ago today my aortic valve was replaced - i took the prescribed meds in the hospital and for one week post surgery, but tossed them due to side effects i didn't want to deal with - and i'm still alive and doing fine - no issues -

so does everyone need to be on meds for life - i don't believe so - but obviously folks can and will choose for themselves -
Posted 1/11/2018 10:23 AM (GMT -8)
We all risk being on meds and not being on meds.....no one can see the future or know what can happen, especially with clots and possible blockages.

While some choose to monitor their UC with no meds and only food....keep in mind some haven't had c-scopes to know exactly whats going on visually, biopsies or if one has polyps.

I agree with side effects of medications.....I won't take meds if I can't tolerate them. There are some I wouldn't ever take.....at this point of thinking. There are always options and I'd try something else or lower dosage, etc.

Definitely personal choice.....but is an emotional/mental/feeling it's a failure choice or something else?

q
Posted 1/11/2018 10:29 AM (GMT -8)
I know there's a few posters who've had some luck without medications. However, the vast majority of UC patients do need medications (based on scientific studies, and reading healingwell for years). When somebody is doing well on the mild anti-inflammatory mesalamines that reduce one's colorectal cancer odds, I believe staying on them is prudent. There's been many cases of "oh I stopped my meds, and flared badly as a consequence thereof and now need much stronger medications," and if I can encourage another to not make that same mistake then awesome!
Posted 1/11/2018 10:40 AM (GMT -8)
@TroubleTurds- I am not arguing because if you read, I did make that choice not to take medication and failed and now on 6mp. With unpredictable nature of UC you never know. It's personal choice but you don't know effects of taking medication or not taking medication in short term. It's all about numbers.

Also one more point, mesalamine is like aspirin and there is research that it helps with colon cancer too.

Again not advocating medicine. I am looking for answers myself if I can do it without it but I have been not lucky.
Posted 1/18/2018 9:50 AM (GMT -8)
I went off meds 6 weeks ago (with agreement from my gastroenterologist). So far so good, but it is too early to get too excited.

I was diagnosed in January 2007 and was on Asacol and then Lialda as well as mesalamine enemas when needed. During the first 6 years, I never had it totally under control. No major flare ups, but problems with bleeding. I made big diet changes in 2013 and have not had any problems since.

My last colonoscopy showed a change... Visually, there was no evidence of disease. Pathology reports were no longer indicative of Ulcerative Colitis, but now Microscopic Colitis.

My gastroenterologist agreed to have me go off the meds, repeat the colonoscopy later this year and see how it looks. He said that there is still a lot that is not known about this disease. We tend to put everyone in the same box, but that may not always be the best approach.

Will keep you posted....
Posted 1/18/2018 11:05 AM (GMT -8)
tjf....Which Microscopic Colitis specifically?

q
Posted 1/18/2018 1:55 PM (GMT -8)
@tjf43 >

awesome that you have a GI that thinks - not always a given -

was there a motivating reason for tossing the meds ? side effects of any sort ?

can you briefly share the diet changes you made ?
Posted 1/18/2018 2:21 PM (GMT -8)
Quincy,

It is lymphocytic colitis.
Posted 1/18/2018 2:36 PM (GMT -8)
Troubled,

Yes, I feel lucky that my GI is willing to listen to me and allows me to participate in my care.

I did not have any side effects, but do not want to be on the medications if it isn't necessary. Unfortunately, that means I just have to try it and see what happens. The Lialda alone was not keeping me in remission. Maybe diet alone won't either, but I want to see.

My diet - no meat (but I eat some fish and eggs), avoid dairy and gluten as much as possible, and a lot of fruits and vegetables (especially leafy greens). I really only drink water, coffee, and an occasional glass of wine but that wasn't really a change for me.
Posted 1/18/2018 3:57 PM (GMT -8)
Just becareful as you might flareup badly and have your UC spread in extent and severity as a consequence of this expirement. You cannot wish UC away...
Posted 1/18/2018 4:56 PM (GMT -8)
or you could possibly fall off a bridge walking your pet tarantula -

pretty much the same reason i quit - they just weren't doing the job and figured why not try the alternative -

wish i had some advice but your body needs what it needs and only you can help interpret what those are -

keep us posted on your future med-free life -
Posted 1/18/2018 5:45 PM (GMT -8)
It's ultimately your choice.

If you can pull it off. More power to you.

If not, jump back on the meds and if your lucky they will work again.

If not than you can always try new meds.

Good Luck!
Posted 1/19/2018 2:55 AM (GMT -8)

TroubledTurds said...
or you could possibly fall off a bridge walking your pet tarantula -

Oooooh you have a pet tarantula and walk him? I do imagine walking a spider would be hard as they can walkup walls and on ceilings! I could definetly see a higher mortality rate in that eventuality turn
Posted 11/16/2018 3:54 PM (GMT -8)
Just wanted to give an update... I went off Lialda on December 5, 2017 and have not been taking any medications for UC. Two weeks ago I had a colonoscopy and met with my GI yesterday. My pathology reports showed improvements since the last colonoscopy.

Last time, pathology was indicative of lymphocytic colitis rather than UC and as a result my GI was in agreement that I could try no medications. This time, there was no colitis indicated at all in the biopsies. So, good news!
Posted 11/19/2018 5:33 AM (GMT -8)
I have very mild disease and I too once had scope and the Doctor actually said “stop meds you don’t have IBD”. Two weeks later I flared, and three weeks later the same Doctor did another scope and found Chrohns.

Just because you’re disease isn’t acting up it doesn’t mean it isn’t there. I know you don’t like the specter of taking meds but it would be really silly to stop them now that you’re well.

Go on a maintenance dose and get on with your life.
Posted 11/19/2018 7:25 AM (GMT -8)
Everybody is different. I am pretty sure that if I stop taking 5ASA I will be OK for 1-3 months. But after this period something horrible will happen (UC flare). If I were you I would continue taking 5ASA forever.
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