moderate/severe flare, nothings working, please help

taper up on probiotics.

good luck with Humira

What got me into remission was:

Uceris for a month, along with 6MP (started 100 miligrams, now at 50 miligrams), 2 Lialda (now only one).

I just learned about VSL #3, and my local Costco carries it. One can get double-strength VSL #3 (VSL #3 DS) with a prescription for when having a flare. That way, you're more likely to benefit from the probiotics even with diarrhea.

My UC was in remission for over 20 years - without meds except for the first 6 weeks to stop the bleeding. But, it did recently come back in December 2015. Lots of red blood in my stool, loads of mucus, gas, diarrhea, urgent need to empty my bowel every 20 minutes or so. (Exhausting!) Luckily, very little cramping, just lots of gas that caused blowouts of bloody mucus so that I could not leave the house. Now, it's back in remission, thanks to juicing again, twice a day, and also not eating dairy.

Back in 1992, when I first got UC, I was a vegetarian who ate 3 to 4 oz of cheese a day to get my calcium and protein - but I really was addicted to the casein. (Dr. Neal Barnard did a TED Talk on cheese addiction due to casomorphins.) I knew even back then that dairy was hard on the gut and I was eating so much of it, so I gave it up at the same time I was taking prednisone. I did this even though my GI doc insisted that diet had nothing to do with it. (I believe they still say that, but I know better from experience.)

I also cut back on most of the seeds, nuts and grains (fiber and fats) that I usually ate a lot of, but, most importantly, I replaced two meals a day with fresh juice I made at home, mostly from carrots with some greens and lemon and ginger. I took prednisone for no more than 6 weeks to stop the bleeding, and then went "rogue," using diet alone to keep in remission. :)

It worked out very well for me. Moved out of state and found a GI doc who did not insist I go back onto prednisone unless symptoms returned. They did not, not as long as I was vegan and juiced daily. Two or three years later, I had a sigmoidoscopy that showed a complete remission, no sign of it, and that continued for 20+ years. Several flexible sigs showed no sign of UC, but I always believed I would probably get it back if I went back to an unhealthy lifestyle. I never felt like I had conquered it completely, because it is triggered by lifestyle even if we have a genetic predisposition of some kind.

Taking powerful meds with lots of bad side effects is not usually smart, not when there are other options with only good side effects. It's your life, and I know you don't like juicing, but I can tell you that it is the best way to enable your body to absorb all kinds of wonderful nutrients directly into the bloodstream. And there are no bad side effects, only good ones. There are juice combinations to suit everyone's tastes, and there are juicers that are really easy to clean afterwards. The point is that juicing is probably the best way to get those nutrients that the body needs to heal itself of all kinds of things. If we give the body what it needs and avoid the stuff that harms it, it will heal itself. Diet does matter.

My UC came back after a very stressful summer caused my overall health to fail completely. That's when I was tested for Lyme's disease and learned that what I thought was a poisonous spider bite back in 1992 was actually an infected deer tick. It caused some terrible joint problems and UC shortly after I was bitten. The UC went away for a long time, but it came back after a terribly stressful summer.

I had not taken time to juice or make my usual power-house smoothie each morning over the summer. I even forgot to take fish oil. Since juicing was the ONE thing that finally brought my UC under control again, I now believe juicing was critical in helping me all these past 20+ years overcome a lot of other health issues, including MRSA that almost killed me in 2007. All of the UC symptoms that had plagued me for 2 or 3 months completely disappeared after just a few days of juicing - and taking a good probiotic, of course.

Even though it now seems like my UC never came back, I am not taking any chances. I will continue to drink fresh juice 2x a day at least until I meet with my new GI doc in May. At some point, I may cut back to once a day, but I now believe fresh juice is what enables me to fight off all kinds of other health issues that have not yet been diagnosed, like joint issues and cognitive problems. I had stopped juicing for a few years, but I see now it really is important to my maintaining my best health.

Besides 16 oz of fresh juice in the afternoon and 12 oz before bed, I take a divided dose of about 3000 mg of omega-3's from a good fish oil with the juice. It helps me absorb the nutrients. I also take 5000 IUs of D3 each day and a good multi-vitamin with excellent mineral content.

If you want to check out how others have been healed of UC, cancers and other diseases through juice fasting, Google the website for Hallelujah Acres. They suggest green juices for UC, but 50% of my juice is carrots. That seems to work for me. Hope my story helps you or someone. Juicing offers amazing healing power!

Hey, sorry youre not feeling well.

If diet helps your symptoms, thats great. I stopped my first flare (before i knew i had uc) by eliminating gluten. Found out Im gluten intolerant, and noticed return of symptoms when i have accidentally eaten it. Gluten linked tp inflammatory conditions, so id definitely recommend eliminating it and see how you feel. During flares, i eliminate lactose as well (no milk, yogurt, "hard" cheeses like chddar are okay tho bc they are low/no lactose). Eliminating alcohol is great, that will also only irritate the body during a flare. Check foods for carrageenan or polysorbate 80, these contribute to inflammation and can hide in foods like rotisserie chickens, non dairy milks. You could also try takingg turmeric, its a natural antininflammatory (proven in studies).

If scd is helping, thats also great, especially if the bleeding stopped. but if you are still going 20 times a day, and you have sever uc, you will probably need the medications as well. My current flare started mildly enough in october. I did the Institute of Functional Medicine's Elimination Diet in nov/dec, my flare didnt get worse but didnt get better. I stopped the diet, flare became severe in jan. I was 117 lb then (normally 120-125), gradually went down to 90. I started the paleo Autoimmune Protocol in feb, it did not do much for me and the diet is so limited i barely had anything to eat. At this point the bleeding was so bad and uncontrolled that i became severely anemic, now im getting iron infusions to correct that. I feel when youre in a severe flare, the body needs the medication to get the inflammation under control, then you might see results and healing from diet.

I was resisting going to the doctor (bad past experiences + no rx coverage), worried because i reacted to asacol hd so really the only option to move forward is biologics and/or immunosuppressants. But im now on azathioprine (immunosuppressant) and hopefully will be starting remicade next week. A year ago i would not have wanted these drugs, but honestly my quality of life is unbearable at this point--i dont have one, uc controls me. I wish i hadnt waited so long because the flare just got so out of control, by the time i started prednisone it couldnt knock me into remission on its own, like i expected it to. And now i can just hope the biologic will work for me, im so impatient to start now and get into remission...id love a full nights sleep, haha.

The humira might help your joint pain--its a common extraintenstinal symptom of uc, and humira is used/developed for rheumatoid arthritis. See if you could get the rectal meds too, they wont be comfortable right now but should help more with the rectal inflammation that is often the most stubborn. Also, save yourself $147 on that ebook. The best way to listen to your gut is a symptom tracker. Make a list of symptoms you experience, make a way to rate them on a scale. Daily, write down foods you take in, write down when/severity of symptoms. You may notice trends over time.

CT Chicklet - I have watched the Tedx Talk. I had too after you mentioned cheese addiction because i have been addicted to cheese all through growing up. My hardest unhealthy food to drop. Otherwise, I had a pretty healthy diet before this. Although I will say i wasn't "fully" gluten free before all of this, but was pretty close. I would spoil myself every once and awhile with a burger with some kaiser rolls. I do like to juice, i love the taste, I just hate cleaning it. (I own a centrifuge type with the annoying screen and a million parts). Since you juice daily, im curious as to what kind of juicer you are using as im sure its much easier to clean and maintain than mine. Also your mention of a tick bite... Just a few months before my UC flare, I got a bite on my face in the middle of the night that resembled a brown recluse.. Its been 3 years now since then, but i still have a deep scar in my cheek where it almost ate a hole through the flesh in my cheek.

notsosicklygirl - Thank you for the clarification. So many drugs with all of this and its hard to learn them all. I've been looking into the humira, and i think it will be worth the shot in my case since SCD doesnt seem to be making a difference with me. I will still follow it "sort of" just because its a healthier way to live anyway. Im hoping I can get on humira though, and learn what causes me to flare through diet and then just slowly ween off when I get my health back physically and mentally.

Justgettinby - Thank you for the burst of confidence for the biologics! I will be getting my first injections on Tuesday. I'm actually kind of excited to start now, I'm just hoping my system can handle it without side effects. I'm just going to try and keep a positive outlook on all of it. You seem a lot like me with your resistance to all these doctors and meds at first. I think im finally to the point where you are, i've tried every health/diet things I can and it was just getting worse. I'm ready to just give in to the meds just to get me under control, then work on tapering off after a few years to see if I can live without them later on. I'm actually excited to start and am crossing my fingers for some permanent remission.

platinumpixie - Since everyone has suggested the rectal meds and I see a lot of people are taking them, i have put them in my notes as something to speak to my doctor about tomorrow when I follow up with him. That and getting prescription strength VSL#3 DS.



==== FLARE STATUS UPDATE====

Since I have started this thread, I started taking VSL#3 and have seen a huge turn around in this flare. I am feeling much better and have already been able to start eating hard foods. Not sure if its just from the VSL#3 or if its from a combination of things, But at this point things are looking up. I will continue to update my status on this thread. Also I know people have mentioned to keep a food journal, and i have been using an app called GI-monitor. It has been a godsend for me. It tracks all my bowel movements, pain, stress levels, meals, and then displays the data graphically, and its free. Anyone without our condition I highly suggest it as its much easier to analyze your data.
Anyways, thank you for all the support here. Im so glad I finally signed up and posted my story, You all have been so helpful already! Looking forward to becoming more involved here.

glad to hear VSL #3 is helping you! eating solid foods again is such a nice feeling :) (well...for a while anyways, haha.) i'm suprised my doctor hasn't mentioned the vsl as i've read good stuff about it here...

yup, definitely a similar outlook! i still feel like diet and lifestyle play a major role in this disease, but i've also come to realize that in my case (as in so many others) there comes a point where the medications are necessary because the alternative is just being sick forever :/ i also intend, once i start the biologic, to do a gut healing diet--homemade yogurt, salads, the whole nine yards! (my diet is so limited right now and although not bad, it's not the most nutritional) just because i want the most complete remission possible.

i've researched tapering off of biologics once in remission--it's not really recommended, because you can develop antibodies and then would not be able to return that biologic (although you could try a different one). but i did find a study in which someone went off the biologic after being in deep remission for a few years, so i guess some doctors might consider it, depending on the patient and their situation.

Good luck to you on Tuesday!! let us know how it goes :)

Glad you're feeling better. If you're stressing about diet, and seeing no improvement from diets then don't restrict yours in any way. I see no benefit from diet modification.