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SCD/IBD-AID peeps: were you ever able to get completely off meds?

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Posted 2/21/2019 2:20 PM (GMT 0)
Hi all,

I've been doing the IBD-AID since last August, and was able to successfully stop my Imuran this January. I was taking it since 2003-2004. However, I'm still taking Colazal/balsalizide, supplements, and the occasional Rowasa enema. If you are able to control your IBD symptoms with diet, were you ever able to go completely and successfully off meds?

I never expected to even partially control my symptoms with diet. My docs were never very hopeful or encouraging about it given the extent of my disease (pancolitis, initially moderate/severe, I guess?), and I love food a LOT. So this is a surprise. I realize it's a good problem to have, and I am fine with staying on Colazal as long as I need to. (I'm fine with going back on imuran, if it ever becomes necessary again, honestly -- I'll just go back to eating delicious bread and cake, etc. and be happy about it.) But I'm curious if anyone here who was on full-time, long-term meds, and managed to go off all of them due to diet? I'm particularly interested in longterm success on the IBD-AID.

Thanks!
Posted 2/21/2019 2:58 PM (GMT 0)
diet has controlled my moderate to severe pancolitis for so many years I've lost track -

but the most likely reason for that happening, according to some experts, is my original diagnosis was incorrect -

rolleyes
Posted 2/21/2019 3:00 PM (GMT 0)
Welcome to the forum. I would strongly discourage you from stopping all of your medications, as you are very likely to severely flare as a consequence thereof. Rather, I urge you to continue taking your prescription meds AND continuing the IBD-AID diet together.

I stopped 6MP (a sister medication to Imuran) and flared exactly 6-months later. Even though you stopped the Imuran in January, it is still within your system and helping to this day. It is a very slow acting medication and stopping it takes a very long time to get fully out of your body.

While there are a few cases that have been successfully off of meds for a series of years, they represent a minority of UC patients. The vast majority of us require maintenance medications. It's easy to cherry-pick a few successes and assume you'll be as lucky. It's kinda like every boy wants to be a sports star or astronaut, but very few actually do. Being totally med-free is exactly the same. Even I wish I could be med free, but decreasing my dosages quickly reality-checked me that it could not happen.
Posted 2/21/2019 3:56 PM (GMT 0)
I have read somewhere: if you stop taking Imuran, there is high probability that you will have a flare within 6-9 months. I have no evidence but it does make sense for me. So be very cautious.
Posted 2/21/2019 4:22 PM (GMT 0)

iPoop said...

...I stopped 6MP (a sister medication to Imuran) and flared exactly 6-months later. Even though you stopped the Imuran in January, it is still within your system and helping to this day. It is a very slow acting medication and stopping it takes a very long time to get fully out of your body...

Oligodar said...
I have read somewhere: if you stop taking Imuran, there is high probability that you will have a flare within 6-9 months. I have no evidence but it does make sense for me. So be very cautious.

This is good info to know, thanks, guys. I've heard so much conflicting stuff about how long Imuran is effective in your body after you stop it. I've been counting the months, symptoms, BMs, believe you me -- and I am doing this under the watchful eye (and repeated lab pokings) of my gastro. If the diet doesn't work for me, then it doesn't work. I'm just at a good point where I can try it without huge fallout if I do have a flare. This definitely hasn't been the norm for the past 15+ years, so I'm grabbing the chance to try it while I can! smile I'll absolutely keep an eye out on month 6 in particular.
Posted 2/21/2019 4:26 PM (GMT 0)

TroubledTurds said...
diet has controlled my moderate to severe pancolitis for so many years I've lost track -

but the most likely reason for that happening, according to some experts, is my original diagnosis was incorrect -

rolleyes

TT, does that mean that they think your pancolitis is the incorrect diagnosis, or that you were diagnosed with something else originally?
Posted 2/21/2019 4:31 PM (GMT 0)
Here's a recent post by someone who relied on the diets and ended up in a bad place really fast:

mayn said...
I'd just like to retract any and all comments I've made in the past about fixing this thing with just diet and exercise. I've been trying for about 7 years so I'm pretty confident I've tried all the diets. The worst part about this disease is also the best part, the flare and remission. The problem with the remission aspect is when you're too optimistic like me you can easily assume that it's the diet that is causing you to go in remission when in reality, you've simply just run the course of the flare and the disease is going back into hibernation. This is the second time this disease has nearly claimed my life because of my own willful ignorance and I feel terrible about spreading false information and hope to you all. Learn from my mistakes and listen to your gastro. I spent an hour and a half begging some poor night shift CNA to kill me because the morphine did nothing for the pain and they couldn't give me anymore for risk of stopping my breathing. I eventually just passed out and got some tramidol to help with the morphine, but don't put good people who are in a profession because they want to help people in a position where they are powerless to do anything besides hold your hand. I'm back on a heavy remicade regiment and luckily it seems to be helping again despite me getting off of it before making it less likely to be as effective this time around. Definitely incorporate diet and exercise, and if you don't have a severe case and can get away with that alone, more power to ya, but don't delude yourselves the way I've been for the past few years.

Source:

https://www.reddit.com/r/UlcerativeColitis/comments/asd91h/be_careful_about_listening_to_smucks_like_me_on/

While it's great to celebrate successes, it is also important to weight the other side of it as well.

Post Edited (iPoop) : 2/21/2019 9:41:13 AM (GMT-7)

Posted 2/21/2019 5:07 PM (GMT 0)

AnnaM said...
I'm still taking Colazal/balsalizide, supplements, and the occasional Rowasa enema. If you are able to control your IBD symptoms with diet, were you ever able to go completely and successfully off meds?

You are now on daily Colazal and sometimes Rowasa, but are you asking to get off these meds too? Not a good idea. Those are probably the mildest meds with the fewest side effects and monitoring your diet may be what prevents forcing you to escalate to the stronger stuff.

So it may be a good idea to remain on Colazal-Rowasa along with your diet (avoiding “bread and cake” is probably healthier anyway). If you go off meds completely then you may later be forced into meds with stronger side effects.
Posted 2/21/2019 6:51 PM (GMT 0)
Don't worry! I have no intention of stopping my colazal or rowasa now or in the immediate future. It's working great. I'm looking for info on how progression of diet change and med drop has gone for others who have done it, since I'm so early on in the process.
Posted 2/21/2019 6:53 PM (GMT 0)
I do appreciate your cautions to be realistic, tho. smile Ain't no fantasyland allowed for long with this disease.
Posted 2/21/2019 8:34 PM (GMT 0)
I have never taken Imuran but I am pretty sure that if I stop taking 5ASA I will start flaring within 1-3 months.
Posted 2/21/2019 8:57 PM (GMT 0)
Glad you plan to continue the mesalamines (my worry was you were not).

There's been some talk on the forum over the years about IBD-AID, you can do a search of the forum to pull up some hits. My general understanding is that IBD-AID is very similar to SCD, so as far as your research I would read about results of both, as if one. As certainly SCD has a much longer term history and broader usage. I've heard IBD-AID is a bit easier to follow than SCD, as more foods are allowed and adherence is a bit easier as a consequence thereof.

The nature of it all is this. UC goes into periods of flares and remissions with or without meds. As there's a phenomenon known as spontaneous-remission that's documented with UC, uncommon but happens.

As far as inflammation goes, over time very small amounts of inflammation go unnoticed by you or I when under-treated. Inflammation slowly builds up over time until it reaches a critical mass, and our symptoms begin manifesting as a flareup with blood, urgency, etc. And our maintenance treatment is meant to catch that creep of small amounts of inflammation before we notice them, yielding longer remissions, and shorter and milder flares.

I would recommend getting periodic FCP stool tests and/or CRP blood tests to make sure you don't have a monster brewing in hiding in the coming months since discontinuing Imuran. If you do flare up, it will take 3-months for the Imuran to kick back in upon restarting and you'd be using pred as a bridge in that scenario. Or instead go right to humira/remicade which kick in in 3-6 weeks, possibly with pred as a bridge.

It's a gamble but sounds like one you're willing to take. Let us know how it goes!

Post Edited (iPoop) : 2/21/2019 2:01:43 PM (GMT-7)

Posted 2/22/2019 1:24 AM (GMT 0)

AnnaM said...

TroubledTurds said...
diet has controlled my moderate to severe pancolitis for so many years I've lost track -

but the most likely reason for that happening, according to some experts, is my original diagnosis was incorrect -

rolleyes

TT, does that mean that they think your pancolitis is the incorrect diagnosis, or that you were diagnosed with something else originally?



actually, it was experts that reside at HW wink
Posted 2/24/2019 12:11 PM (GMT 0)
Personally speaking, I can't control my symptoms with diet, but I avoid certain foods that make my symptoms much, much worse (e.g rye bread, which I really miss having). I also never found the SCD or the IBD-AID diet to make any improvements to my symptoms. If anything the increased vegetable and fibre intake gave me a lot more discomfort than my usual diet.
Posted 2/28/2019 1:43 PM (GMT 0)
Got my blood tests (CRP, CBC) and they came back normal/good according to the gastro. Will keep you guys updated on how it goes this year, good or bad, in case anyone's searching on this topic in the future.
Posted 2/28/2019 5:30 PM (GMT 0)
Hi Anna,

I just wanted to chime in for moral support. I have been off the UC meds for about 3.5 years and very stable for 2.5 years, with some details in my profile. My colonoscopies have gotten progressively better in that time and I feel a lot better without the meds, but the risk is on me. After getting colon cancer 6 years ago, despite doing everything my many gastros asked (I don't blame them), I decided to go my own way out of frustration and desperation. I believe if you don't change the conditions of your body after cancer, there's a very good chance it will be back again. It took years of reading, experimenting and genetic testing to get on the right path for me. I see no reason why anyone that wants to go a similar path, can't do it while staying on their maintenance meds to help mitigate risk and keep your Gastro happy.
Posted 3/3/2019 12:59 AM (GMT 0)
I've been on the IBD AID diet since last summer. I've been able to decrease my oral mesalamine down to 6 tablets (from 12 when I was flaring) with no increase in symptoms. Also recently, I completely forgot to use a Canasa suppository in the morning one day last week. Normally I would have noticed the urge to go, but I went through the entire day with zero symptoms.
I really don't see any need to stop my nightly enema because it has no side effects, and I'd rather err on the side of caution. Also there is some evidence that mesalamine can protect against CRC.
Imuran on the other hand does have some potential side effects, so if I was taking it, I would probably consider at least dropping the dose. As for mesalamine, I will likely try to taper the morning Canasa which I had previously needed to stay away from the bathroom the entire day.
I am actually going to go even further with diet and do the Keto diet. The only change is that I will have to avoid fruit and be stricter with grains which are so hard to avoid, so it won't be that much of an adjustment.
Posted 3/3/2019 6:09 AM (GMT 0)
I started IBD AID on Monday (now on Day 5). How soon can I expect to see results, if any at all / how soon have others seen results? The timing of starting the IBD AID diet has been rather unfortunate for me because I also picked up a strange skin infection or reaction just beforehand and had to start antibiotics and an antiviral until the biopsy results from my skin come back. I'm concerned the antibiotics may mess up my stomach, as they have in the past. The blistering of my skin is also concerning though, so for now, I'm just following doctor's orders.
Posted 3/3/2019 2:47 PM (GMT 0)
For me the benefits were fairly gradual, like over a period of months.
Posted 3/7/2019 12:13 AM (GMT 0)
A little over a week in on the IBD-AID, and I'm doing a lot better, but not sure if it's the prednisone, antibiotics, Valtrex or combination of the above, but I'm sticking with it for now.
Posted 3/7/2019 3:09 PM (GMT 0)
Glad you're feeling better. If the progress was in a week or less, then prednisone is the most likely reason why. As Pred is rocketship fast in relieving our suffering during flares. Other things like our meds or diet changes are things that take a month or months to have a big affect.
Posted 3/7/2019 3:28 PM (GMT 0)
IMO Pred is for getting out of a flare, diet is for staying in remission, and improving the quality of your remission.
Posted 3/7/2019 10:49 PM (GMT 0)
I'm guessing you're correct, and I'm hopeful I can remain symptom free when tapering off the prednisone and maintaining the IBD-AID. When I first flared 40mg didn't do a thing. So happy to have quick, great benefits from 20mg.
Posted 3/8/2019 3:42 AM (GMT 0)
I'm getting more convinced all the time that carbohydrates are my nemesis, especially the "empty" ones, like sugar and white flour. When I look back at my pre AID diet, I'm pretty sure I was consuming 300 to 400 grams of carbs everyday. With AID that dropped to probably 100 to 150 grams of healthier carbs (fruit, raw honey and steel cut oats especially). Since moving towards Keto I am now below 100 grams every day and plan to continue to reduce, so that is radical change for me, and my colitis is quieter than it has ever been in remission.
Of course, that is only my experience. But since it is helping, not just with colitis, but also blood sugar and cholesterol, etc., I'll stick with it. As a bonus, I am shedding some weight too. I only had about 10 pounds to get rid of, but it was extremely stubborn and in all the wrong places (i.e. dad bod).
Posted 3/8/2019 11:23 PM (GMT 0)
Hi Anna,

I appreciate your sharing because time to time I like to check and see if people have similar experiences etc. I’ll be curious to know how you do and it sounds like you have a realistic outlook. Just curious what your dr thought about you starting the diet? I went like a decade Med free (my dr knew) for no magic reason so yeah maybe you’ll flare but maybe not!! I’m thinking about slowly getting into that diet in conjunction with my med.
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