I,m Sucking at this Disease

Have you tried the IBD Aid diet? it's really good for colitis - https://www.umassmed.edu/nutrition/ibd/ibdaid/
You eat a mix of prebiotic and probiotic foods.

Maybe a short course of pred might help? 40mg and reduce by 5mg every 7 days stops my flares if i can't control them.

Other supplements to try - turmeric, and full spectrum cbd pills.
Good luck!

Enemas should be part of your maintenance meds. Use them every day until you are in a sustained remission for several months and then you can slowly ease off. You may have to always use them a few times a week to stay in remission. They are completely safe for long term use and if that's all you need to get and stay in remission you don't stop.

Good luck!

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60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.

Salad and raw veg is good, but so not worth it.
I’ve learned to like it cooked.

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Born in ‘62. Symptoms since October 2012.
Diagnosed January 2014 IBD, Ulcerative Colitis, Pancolitis
Currently: Apriso, Entivio, Valtrex... it varies.

Have tried: Almost every healthfood thing in the world (NO help)
If this could be cured with herbs, vitamins or diet…
Good days, bad days and a lot of sleep.

Sassysback,

No I didn't stop after two weeks. I started Rowasa August 1 and have dedicated myself to them every night up to today and will continue to take them. I'm hoping maybe early next year I can ween off but honestly, if that's what keeps me from flaring, I'll do it every night for as long as I need. It's a trade off. I'd rather be uncomfortable for 30 minutes every night than 24/7 every day.

When my doc prescribes, she gives me a month supply at a time and I do them. Depending on what your doc thinks, where your UC is, and if you're currently flaring, I'd try for longer than two weeks for sure.

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36 yr old man
Diagnosed UC 2006
Currently: Lialda / Imuran / Inflectra
Failed: Humira

Yep, stay on the enemas for months and then slowly taper to every other night for a while. You can also up your Asacol to 4800 mg a day. I was able to manage my UC with only Asacol and Rowasa for years...the good old days... Lol.

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35 years old; diagnosed UC March 2007 (couldn't get scope all the way thru).
9-29-16: chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Remission since Dec. 25, 2016 until I started smoking again in 2018 after 9 yrs quit. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Started Remicade 7/25/19.

It's not you. It's the disease.

Call your GI and stay on him until he/she helps. If he/she doesn't, find another one.

My first GI was a hump. All he wanted to do was drive the colonoscopy machine up senior citizens for Medicare payments. Second guy was a genius. And his staff of nurses were top notch. I had a nurse phone line I could call and within a few hours I would hear back from both them, and whatever input he had for me. And they encouraged me to call with any symptom changes because, as he said, "that means your disease is changing and I need to know that".

All doctors are not made equal.

What does of oral medication are you taking? I think I'd go up to the maximum of that and use enemas daily. The main thing, in my opinion, is that you stop blaming yourself for your disease progression. It's unpredictable, and really, you can't control it. It's unlikely that the salad is at fault. You are undertreated, and you need to find a doctor that will work with you to get you on the right dose of rx to get you in remission. If you have the opportunity, you could request uceris enemas. They are stronger than mesalamine.

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Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
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

I take 6 tabs 5ASA twice a day, equaling 2,400 mg daily. I will up that to 8 again. But that gurgling can happen any time for me. Lol the enemas are Pentassa 100 ml.

I was initially Dx with left sided colitis and patches on the right ascending colon 20 yrs ago. And last Dec they removed a serrated Sessile Polyp from the right side in an area not active.
It was a cell change, not malignant, but My Dr. Wanted to scope again in a year. Now how can a polyp develope in an area not active? And don't polyps take years to develop? Cause I did have a scope less then 2 years before that.

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58 yr Female = UC 20+ yrs in remission until Oct 2018.
Left sided Colitis currently active.
3200 mg Asacol daily & Pentasa rentension enemas on and off
Anxiety/Depression : currently Celexa 40 mg

"Living and still learning in this ever challenging journey through life and illness with love and support from those who share"

I am similar to you....left-sided, constipated. Had never really gotten into remission save for a few weeks at a time, even on a restricted diet (though the restricted diet took care of most of my more debilitating symptoms). At one point early on, I was taking Mesalamine enemas, but I stopped after about a month because it really didn't seem to be doing anything and I was getting real tired of that being my nightly ritual, and my GI didn't press the issue. Cut to this last summer and a new GI, and she puts me back on the enemas for a minimum of 3 months. I'm actually still on them, though only every other night (in between I still have to take a Mesalamine suppository) mostly because I'm still trying to heal a fissure I've basically had for a year and a half.

But this has been the longest stretch of normal bowel movements (no blood, no mucous) I've had since I was diagnosed. The trick has obviously been sticking with the enemas for the full initial 3 months. I'd say I started to see a noticeable difference after the first two. And I've even had one or two bouts of explosive movements (due to eating some things I shouldn't have) during that time and I've managed to stay steady. So, as others are saying, I would definitely recommend seeing through an enema course for at least a few months. I also went heavy on the Turmeric at her request (like, 2000mg a night).

Of course, I'm a little terrified of both either eventually tapering off the enemas or having to stay on them forever, but right now I'm just happy to be mostly stable.

You might also want to skip raw salad for that duration. Raw salad ruined me when I was flaring.

p.s. You don't suck. UC sucks. It's such a moving target and the fact that both symptoms and remedies are so idiosynchratic REALLY doesn't help things much. You are not alone in that feeling. Be strong!

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44m; Left-Sided UC; dx 2015 after live liver donation surgery.
Quit smoking just before surgery; gallbladder removed.
Prone to constipation more than diarrhea.
Constant struggle with non-healing fissures.
1.2g Lialda/Mesalamine DR; 2x in morning & evening.
4/1-6/19 1k mg nightly Mesalamine suppository.
4g nightly Mesalamine enema since 6/19.
Status: Since 8/19 consistent remission for first time.

Thanks kweeks...
Your story really helps put mine into perspective.

I am 58 and had a complete hysterectomy two years ago. I constantly get hot flashes and memory loss is becoming an issue. I use vaginal suppositories for dryness and pain. But my mind is wondering are these hot flashes or fevers? I started developing more UC symptoms as well since then. Anyone else in my situation?

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58 yr Female = UC 20+ yrs in remission until Oct 2018.
Left sided Colitis currently active.
3200 mg Asacol daily & Pentasa rentension enemas on and off
Anxiety/Depression : currently Celexa 40 mg

"Living and still learning in this ever challenging journey through life and illness with love and support from those who share"

Q,
I had the ovaries out too. I was close to menopause, and the Hrt I get from the vagifem. It targets only that area. It did work ok for pain and dryness for a while, but when I'm not feeling great and doing enemas etc, I don't have the desire if you know what I mean.

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58 yr Female = UC 20+ yrs in remission until Oct 2018.
Left sided Colitis currently active.
3200 mg Asacol daily & Pentasa rentension enemas on and off
Anxiety/Depression : currently Celexa 40 mg

"Living and still learning in this ever challenging journey through life and illness with love and support from those who share"

Q,
No, I have not talked to the surgeon who removed my womanhood lol. I usually deal only with my GP on my health issues. Breast cancer runs in my family, so after years of rapid blood loss, I decided to rid myself of the problem. At that time my colitis was inactive.

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58 yr Female = UC 20+ yrs in remission until Oct 2018.
Left sided Colitis currently active.
3200 mg Asacol daily & Pentasa rentension enemas on and off
Anxiety/Depression : currently Celexa 40 mg

"Living and still learning in this ever challenging journey through life and illness with love and support from those who share"