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What did you do to get into remission?

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Ulcerative Colitis
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Posted 4/19/2015 10:30 PM (GMT 0)
It would be helpful for me (and many others) if as many people as possible said what they did to get into remission.

People talk about flares and remission, but I've had UC for 2 years and never had remission. Just lots of diarrhea every day and night.
Posted 4/19/2015 10:43 PM (GMT 0)
I've tried numerous supplements, diets, medications etc over the years. I never really hit a stable remission until I went on remicade.
Posted 4/19/2015 10:46 PM (GMT 0)
Lialda 4 per day and rectal meds. Pred helped the first time I flared but not after that.
Posted 4/19/2015 11:26 PM (GMT 0)
Not sure you will get any useful information from this post as something different works in everyone and every single treatment, including alternative, has probably put many into remission. It's all trial and error. Please read the resources thread at the top of the page for ideas. So far it looks like your doctor has been dropping the ball for some reason either through laziness or a severe lack of knowledge. Another doctor could have done much better. I have found with autoimmune diseases that you need to educate yourself to the point where you tell the doctor what you want to do instead of relying on them to make the decisions. That's what I do.
Posted 4/19/2015 11:33 PM (GMT 0)
Gary:

Thank you for the message. I agree with what you wrote.

What did you do? I can't tell from your signature line what did the trick.

I've seen 4 GI doctors. They don't explain anything. They say "take this". The last 2 said take Humira. I'm trying to avoid going that route.
Posted 4/20/2015 12:15 AM (GMT 0)
I am not in remission yet but close, 6mp.
Posted 4/20/2015 12:20 AM (GMT 0)
Only Azathioprine and Remicade ever brought me remission.
Posted 4/20/2015 12:25 AM (GMT 0)
What did I try? Everything possible. Seriously. Multiple diet modifications. Multiple Rx's from different GI's. Tons of different supplements mentioned here. (Most failed and money down the drain).

This is the only life I have so I spend time trying to make it better.
2 years no remission? Hah, it was 10 years for me before I realized GI's did not have the answer and it was up to me.

My list of what worked for me:
Mesalamine enemas are the best Rx I use (now rarely needed).
Diet modification keeps symptoms under control as much as possible (not perfect).
A (very) few supplements have been beneficial: VSL#3 probiotic, clay water, wild oil of oregano, turmeric, grapeseed extract pills.

Daily: Balsalazide 9 pills, 1 generic Citrucell fiber pill, green veggie juice.
Posted 4/20/2015 1:01 AM (GMT 0)
What has made me better is in my signature. All help. If you want to be technical, I have never reached remission in my 4 1/2 years with this disease although I have a very strict definition for remission. If you aren't 100% the way you were before getting UC then you're not in remission in my opinion. I have an average of 3 solid BM's per day, which is my only symptom. I have no other UC symptoms. But, before UC, I only averaged one BM per day and the stools were much larger. Now they are thinner and smaller instead of one big long thick chunk, S shaped as Dr. Oz would say. Oops. That was another thread. I do live an almost totally normal life. If I ever have to go to the bathroom out in public during the day it is almost always because I have to go #1. I no longer scout out where the bathrooms are. When I was at my worst I was going 20+ times per day with bloody diarrhea.

If the Lialda isn't working you should try a different med and add rectals and high dose probiotics to the equation. You can also try taking some anti-inflammatory supplements. Many have success with very high dose Curcumin of 3 grams per day or more. I would also highly recommend going on a diet high in resistant starches.
Posted 4/20/2015 1:21 AM (GMT 0)
1st flare: Asacol (now Delzicol) and Rowasa enemas.

Other flares: Increase the Rowasa back up to nightly after tapering.

Subsequent flares: Steroid enemas & 12 Asacol a day.

Last two flares: Pred for a few months (2 or 2.5) & nightly Rowasa and Delzicol.

I have stayed in remission for the past year with nightly Rowasa and 12 Delzicol a day.

I consider myself one of the lucky ones. I also eat a very healthy diet and work out a lot and try to get decent sleep.
Posted 4/20/2015 1:58 AM (GMT 0)
Remicade is the only uc drug to put me into remission. Took me 2.5 years of trying everything else, first... Maybe humira is yours?

The solution is different for each person, and varies depending on an individual's disease severity and response to a medication.

Is there something about humira that scares you, if so what?
Posted 4/20/2015 2:33 AM (GMT 0)
Garylouisville -- I and my doctor (likely) would say you're in remission. My remission is similar to that. We likely have some scar tissue that will make the stools thinner forevermore.
Posted 4/20/2015 3:37 AM (GMT 0)
Hello Everyone==

In the spirit of sharing I have decided to tell my story:

I have had UC/left-sided proctosigmoiditis for 20 years. I followed the SCD and took daily Asocal. I used Medro pack & Rowasa/hydrocortisone enemas for flare-ups until last August when they stopped working on me. I suffered through five months of repeated medications, heavy duty steroids and antibiotics. Nothing worked. I became very, very ill. I was totally resistant to all the standard medications and wound up in the hospital in January. Despite the possibility of side effects I decided to try a biological. After much research and having read the entries in this forum back to 2009, I chose SIMPONI based on your comments and the studies showing its high efficacy and success rates. It took a while to get it through the prior authorization phase with the insurance company, as it is a new specialty drug, but truly I was a perfect candidate as I had tried everything else and nothing had worked.

I think it is important to share the information regarding my experience with the drug so that others can benefit from my experience.

I started the SIMPONI in March and I have been on it now for 8 weeks. The injection pen is very easy to use and only a slight pinch is felt. No swelling or reaction at the injection site. A bit dizzy and queasy after the first dose (a double dose of 200mg), which only lasted about a half hour. (I also take Lialda 4 tablets, VSL #3 probiotics and EGCG capsules concurrently.)

I felt the effects of the medication almost immediately. By the next day my stools were much improved and the amount of blood had decreased. One week later I had completely normal bowel movements, no blood or mucous and no cramping. A bit fatigued and also a bit of a foggy mental state.

I had another dose two weeks later and another dose four weeks after that.

I am feeling fabulous now! I have great energy level and I am able to eat. I feel like I am in total remission. I have no side effects.

My lab tests last week for CBC, renal and hepatic functions came back great! I ate out at a restaurant for the first time since last July.

I am so thrilled that I have finally found a way to heal. I tried everything from western medicine to Chinese medicine to healers and homeopaths and acupuncturists and you name it.

I meditate and I do yoga. I eat very healthily. Little to no gluten or sugar. Despite my previous peaceful and very healthy existence I still relapsed. It was very frustrating to have been doing everything right and to still get so sick.

I am grateful and blessed to be able to be writing these words and I pray that I will continue to respond so beautifully to this medication, truly a miracle of modern science.

Light, love and blessings and wonderful healing vibes to you all. I hope this helps someone.
Posted 4/20/2015 12:08 PM (GMT 0)
Agree that everyone is different but it can be helpful to see what others do. This may or may not work for anyone else.

In a flare, I use daily hydrocortisone enemas, six grams of curcumin per day, and a high dose of Pred that I taper off quickly (start at 60 mg for a few days, get to zero within seven weeks).

I've had only two bad flares in my life. The first one I ignored from Thanksgiving to Xmas and ended up in the hospital. And on Pred for seven months. And anemic. The second flare I treated as described in my second paragraph and I was functioning at 80% the entire time and on Pred for only seven weeks.

That's what worked last time but I didn't increase the curcumin as soon as the flare started. I was flaring for several weeks before I did. Next time, I'm trying the exact same thing but will increase the curcumin immediately and will plan to taper the pred a lot faster, possibly as quickly as 10 days.

I believe that the best way to end a flare is to throw everything, at high doses, at it immediately.

To prevent flares, I also use an hydrocortisone enema anytime I have a few days where I feel "off." This ends up being, on average, an enema every six to eight weeks.
Posted 4/20/2015 1:52 PM (GMT 0)
Remicade. I've been on it for 9 years now.
Posted 4/20/2015 5:47 PM (GMT 0)
Anything and everything that can/ or will help is on deck to be tried or taken. Currently over the last two years I have remained in remission by taking 3 Lialda a day, 3-6 drops of WOO, 4.5 mg LDN -thinking about dropping to 3 mg. And a ton of probiotics to repopulate what the WOO kills off daily. Prior to this regime i would ask for Rowasa at the start of each flare - that always worked for me in the past. Would still ask for Rowasa if needed but haven't had to do that though for awhile.
Posted 4/20/2015 5:52 PM (GMT 0)
Humira, and for the first time in 24 years of being sick with IBD I'm finally in remission but thanks to the IBS that I ended up developing I sadly barely feel like this is remission...feels like I'm always getting the short end of the stick, a feeling that I just can't seem to get use to and it's really depressing.

I always imagined if I ever got into remission that I'd feel like I was finally on top of the world...and I am grateful because it's been a big improvement but my daily life is still being intruded by stupid IBS...I'm also scared of flaring with my crohn's colitis at some point again so it's probably partly why I feel so bleak still.
Posted 4/21/2015 1:26 AM (GMT 0)
I could not reach remission for 1 1/2 years. I kept on getting better if I took some time off from work but as soon as I returned my symptoms came back. I realize that a lot of sleep was very beneficial for me. However, when I worked I could not catch up on sleep during the day if I had a bad night.

The Low FODMAP diet did help me a lot with the pain, I got better night sleep. It might not help every body...

As I was not ready to move up to other meds such as pred I also tried to increase my rectal meds. One enema and one suppository morning and night. For the morning med I got up abou 2 hours before my real morning time, take the med and go back to bed for the other 2 hours left. After 2 weeks I started to get better. I'm now taking one suppository morning and night and 2 enemas a week. I'm doing very well.

Hope you find a med routine that work for you.
Posted 4/21/2015 12:49 PM (GMT 0)
Entyvio...
Posted 4/21/2015 3:26 PM (GMT 0)
I started Uceris and 6MP, along with gluten free and for the past few days I've been feeling pretty good.
Posted 4/21/2015 5:21 PM (GMT 0)
Oral/rectal 5ASA as in my siggie.
Probiotics and fibre supplements.
q
Posted 4/22/2015 1:47 AM (GMT 0)
i tried a bunch of food/supplements etc. for me, they did no good at all.
Severely restricted diet, like nothing but white rice seemed to help, but as soon as I ate anything at all else, back to awfull.
Most of the story is in my signature. It seems to have finally worked.

I'm feeling almost normal now.

Keep trying.
Low residue diet might give your colon a break.
Posted 4/22/2015 1:40 PM (GMT 0)
For me it was low fibre diet, no alcohol, and rest rest rest rest rest.
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