anyone else wonder what this so called "remission" is?

My first 9-10 years with left-sided UC were hell too, no relief from RX. I did everything the doctor said, took the pills, changed doctors to see if the next one was smarter. Nope.

Two things I will suggest: using mesalamine enemas and trying diet modification. Both of those, over time, got me to remission. Mesalamine enemas used nightly relieve a lot of the inflammation and bleeding (if you still have that). Diet mod was very difficult and I tried every UC diet talked about. Eventually I just let my gut tell me what it could handle. Eliminating fiber foods was a huge benefit and continues to be beneficial.

Having the surgery is the ultimate cure and you could talk to a surgeon just to find out the facts. I took comfort that it was available but now I don't feel I'll ever need it. Not cured but also confident I can control my UC.

Good luck.

edit to add: you can not remain on steroid enemas long term (glad you are seeing improvement). After ending your course of steroid enemas you should then begin using mesalamine enemas as part of your continued care. I eventually did not need them anymore but some people here use them nightly.

Post Edited (imagardener2) : 8/29/2018 6:33:43 AM (GMT-6)

I was lucky to get into remission pretty quickly with my first, quite severe flare up. After that it was always a struggle, but that experience allowed me to see what it was, a complete absence of UC symptoms. No more excuses, no missing work, you feel better. When was your last scope? It sounds like you know what the problem is, but is that your opinion, or is it based on evidence? I think rectal meds are a good idea, and if your GI is resistant to prescribing them, I'd go to someone else. A GI who makes things difficult is not worth your time and money. Absolutely no reason you shouldn't be able to use mesalamine enemas everyday, and have other options available when they are necessary for you. If he wants to take a look before prescribing something, I can understand that. It's not a bad idea to see how the humira is working by scope and blood testing. Maybe another medication would work better. In the worst case, there is always surgery. I've completely turned my life around. I don't have a family to support, but I do support myself, and no one is going to help me. I have basically no family, and the few people I have, do not have any money to help me. Not even for a month, so I HAVE to be able to work. I had surgery, and I am 100% able to do everything, and I don't spend money on UC, or worry about it anymore. Of course, you should try all the options available before that, and I am sure, something will work.

Remission is when your immune system that is in overdrive at the moment calms down and gives you a relief from the symptoms you are currently experiencing. If you want to achieve that and you are not one of those lucky ones, you need to research carefully what others have reported in the past. Make a list of those strategies, how to implement and then try out one by one.

In my case, I modified my lifestyle significantly. Changed the diet completely. First, I went on something like almost DIY elemental diet. Something like /www.integrativepro.com/Products/Gastrointestinal/Physicians-Elemental-Diet is available now. Any food that will give you your daily need of nutrients without giving any effort to your GI system to work.
- Religiously used my rectal medications, be it a steroid, be it mesalamine. For months, I did steroid in the afternoon and mesalamine at night.
- Removed every food that was remotely known to cause trouble, even if a single person reported the problem, I removed it (and thats how I reached to something like I linked above).
- Added many known supplements to help gut healing, like glutamine, NAG etc (GI Revive is best go to if you are overwhelmed.)
- Started researching gut flora modification. Started with soluble fibers and probiotics.
- Eventually added insoluble fibers/prebiotics.
- Played around with these fibers for 14 months to figure out how they suit me, doses, frequency, combinations etc.
- Continued limited foods with a prebiotic mix on daily basis.

The result, maintaining remission 5 years in, touch wood it stays like it is.

This is how it helped me. It may not help you at all, but go back to older threads like form 2011 onwards and see what folks have reported. See what is doable for you, take a leap of faith.

Don't forget cannabis extracts. I never tried it but if you are in a legal state, give it a shot.

as suggested by Imagardner2 above, get your doc to subscribe mesalamine enemas - if your doc is reluctant, get a new doc -


have you done much with diet mods - i don't recall ? some folks swear by diet changes -

There's always hope. My disease has been in remission for the last nine years on nothing but occasional probiotics (VSL#3), fish oil, and a somewhat healthier diet. I can't say how much can be attributed to each of those, but I'm not going to try and find out. Good luck.

Even retaining enema 3.5 hours is good. Be patient and continue using. Please insist getting mesalamine enema RX. They are expensive if your insurance doesn't cover them (I have high deductible so I pay). Healing this area is super important and no oral RX really gets this far.

Many doctors don't RX enemas because they get resistance from their patients who want things fixed with pills. BUT ENEMAS WORK! or is it "butt enemas work"? Hope you see some improvement.