Flaring for a year and a half now!!

what does your doc say ?

I had a yearlong flare. The only qay to get out is to get aggressive in treating your uc with medications. Uc has a tendency to spread in extent and severity over time. You uc maintenance medications need to keep pace with that progression in order to keep your symptoms away.

Salofalk is a meslamine-based anti-inflammatory medication. You should be taking 4.8 grams oral meslamine, and 4 grams enema a day for maximum doses, if you are not then ask your gastroenterologist.

If you're maxed out on meslamine, then it's time to seriously consider immunosuppressive medications (aza, Imuran, 6mp).

@juststud Doc will just prescribe steroids in ever higher dosages. But I've done so many treatments of that in the past year and a half, it cant possibly be the answer.

@garylouisville I'm in Germany. Borax was prescribed by a homeopathic doctor whom I went to see when the regular Gastrodoc wouldnt listen or couldnt come up with anything

I dont take any probiotics or supplements. diet changes: tried everything and nothing has any effect. Its what gets me down the most. I looooove food. I love to eat and having to think about the ingredients every time I put a bite of food in my mouth, I find incredibly difficult. Plus as I said all the restrictions I put myself under (and I have at times cut out pretty much every food group: sugar, carbohydrates, meat, milk, lactose,...) make no difference anyway.

medical options: none, really. I'm tired of the regular doctors nonsense. All they can think of is more procedures, more medications. I've grown to distrust them as I've heard from friends who are Gastroenterologists that the decisions are often money based, not necessarily based on whats best for the patient.

I've been on Azathioprene in the past, but I really feel that my body cant take any more immunosuppressiva and/or chemicals. I'm always on the verge of an infection spreading elsewhere in my body in addition to the one going on in my bowels. I go from inflamed joints to inflamed gums to inflamed bladder to inflamed tonsils to ..... on and on it goes....

@iPoop: I've been on 6grams of oral Salofalk for a long time with no effect. I've done courses of enema too. That worked for the time that I was using it but as soon as I stop it all starts again. Hardly a long time solution either.

There is currently no cure for UC. It is a progressive autoimmune disorder. You admit your symptoms return as soon as you stop your maintenance meds. Why do you stop? You enjoy UC? Makes no sense. You've been dealing with this since 2007. Why not try probiotics and supplements if you refuse medical science? When was your last colonoscopy? Sorry to be blunt. Best.

It doesn't make any sense to be anti-doctor, try these crazy treatments that have zero scientific reasoning, and then turn around and want to try more crazy ideas with no scientific backing when the other ones didn't work. You treat your doctors as if they were quacks but the homeopathic doctor gives you quack treatment plans that don't work and then you search for more quack treatments. There are alternative treatment options and supplements that actually do work in some that have legitimate studies backing them up such as probiotics, Boswellia, curcumin, and slipper elm, just to name a few. Probiotics of some kind help almost all of us. You have bypassed the ones that actually do work and have tried snake oil treatments that are basically nothing but scams. Please read the resources thread at the top of the page. You came here for ideas because the things you have tried weren't working.

I'm sure you all mean well, but this isnt helping. I feel worse than I did before.

Maybe something got lost in the translation.

I am not anti-doctor. I have seen dozens so far. I do as I'm told and nothing changes. So I am looking for alternatives. Is that so bad? What else am I to do?

I dont know which are good and which are bad alternatives, that's why I came to this forum. I'm not sure why everyone seems to feel the need to outright dismiss everything I've done and tried with an undertone of eye-rolling.

Anyway. This is upsetting me more.

Thanks for trying.

Bye.

MamaD

I have been where you are but never had the remission you did in the beginning. Oral meds just never gave me any benefit and I was unwilling to move up to biologicals.

Have you used mesalamine enemas (not suppositories)?
Have your doctors suggested 6mp/Imuran? What about Remicade or Humira?
What about VSL#3 or whatever high dose probiotic is available in Germany?
If you have not tried these you have not come to the end of med possibilities.
You need to get off prednisone, that is unhealthy longterm.

Please write a "Profile" so we know what you have done in the past.
Otherwise how can we make suggestions?

Unfortunately with this disease you often have to do the research yourself to find something that works. You often can't depend on the medical doctors and you can't depend on alternative doctors either. This forum is filled with tens of thousands of experienced patients who have tried every known treatment option known to man from medical options to drinking your own urine. We know which ones are outright quackery to alternatives that actually do work and have science behind them. The ones that can actually work are all listed in the resources thread at the top of the page. Unfortunately, there are no treatments, either medical or alternative, that are guaranteed to work in everyone. It is very individual, hit and miss, and trial and error and neither the regular doctors or alternative doctors know much about many of them. You have to find them yourself and not depend on anyone but yourself. Often times the best success comes from mixing both medical options and alternative options and almost everyone has success with some kind of high dose probiotic which again can be very individualized. Do you have access to either VSL#3 or Ecoli Nissle (Mutaflor) probiotics? We're here to help you if you let us instead of relying on medical doctors who often don't seem to know much or the quack doctors who know even less.

ya, mama, i agree you need to find something besides the steroids -

i don't have any experience with borax - sorry :-(

what about FMT ?

what kinds of foods did you avoid/eliminate ?

stick around - maybe something will click for you