Still flare free

Hi,

Just wanted to update, still flare free from Feb 2014, since starting LDN.

Each passing flare my bowel movements are better and better.

Added UC Relapse Prevention formula (Heron Botanicals), PC Phosphatidyl Choline (BodyBio) and Quercetin to the list.

Did blood work again and i'm allergic to Dairy protein and gluten. Still GF and mostly dairy free.

2 formed BM's daily.

Still low ferritin levels :(

I had to visit a gastroenterologist just to get a script for Ascaol refills and he's 'surprised' i'm doing well, but actually agreed not to rock the boat and try to prescribe meds and such. He hopes to cross path with my naturopath someday, LOL. I said how i'd like to continue with an integrative approach.

BM's aren't always 100% good, but i have to say, i'm doing better than years prior to knowing I had UC or whatever this is. I really recommend doing research from both sides of the health spectrum (conventional medicine and alternative), experimenting with foods, getting blood work done and never losing the willpower to work with this real struggle.

God bless, really. I wish nothing but happiness and improvement for everyone the year ahead. I never thought i'd be where i am in my life. Please don't hesitate to reach out to me. :) I owe a lot to Healing Well for your help too.

Glad to hear its working for you. Would you mind going over your LDN protocol?

A little confused. You said you have been flare free since Feb 2014, followed immediately by, "each passing flare my bowel movements are better and better." Glad your program is working though. Are you 100% sure that it is the ldn and not the diet changes?

@Marauder93, InSoFla (on HW forums) helped me with this one. She put me in contact with her prescribing doctor, as there are only a handful in the country I think, and I did a phone consult and got a script for Transdermal LDN. 4.5mg in one tube. The tube contains three nights worth medicine. I apply it to my forearm every night (like lotion), alternating, right before bed.

@Gary, not sure if LDN is what made me better, but its the last thing I added during the time of a major flare. Feb 2014 was my last flare, sorry for confusion.

@DBwithUC, I should specify in my signature that I've been taking VSL#3 probiotics since 2012. Didn't mean to point a finger, just meant that he understood that its important I don't rock the boat rather than want to take me in as a new patient and do lots of testing or trials on other meds. I should have added thats he's surprised because he thinks the Asacol is likely doing nothing for me, as i'm taking 800mg once daily. But, as i said earlier, he agrees, let's not rock the boat. Certainly open to changes should my health change.

Glad you are feeling better. I think anyone who has colitis/crohns needs to go GLUTEN FREE. Even If your tests for celiac come back negative you can still have an allergy. I learned It causes inflammation all through the body.

After this last flare that I had, I started juicing and cut out all gluten, and milk products. Working on my sugar issues too. ( so hard when you are on pred)!



Happy new year to all!!!

Thanks for sharing stereoman. Hope you are enjoying the Cali life and sunlight (I think that's where you are @ the moment correct?).

Best.

Wow, nice work! I've just seen a Naturopath and inquired about LDN, she said it's not commonly given for UC, but for Crohn's. She said she'd "look into it" (sigh). She did recommend a pure form of fish oil, a powder containing L-Glutamine, licorice root and aloe leaf, and Turmeric C3 1 gr/daily. I've been on Quercitin for well over a year together with just turmeric, they did not prevent my major flare this past summer. She also tinkered with my thyroid med, but proposed we do nothing further until I'm in full remission for a period of months. I agree with you about a combination of alternative and natural medicines. Good luck to us all.

zengirl, great to hear you're pursuing many different options to help you. I'm not advising medical advice, but if it helps, my doc recommends upping the supplements: Inflaguard (up to 16+ tablets) on any given flare day. It's helped me very much, I really think it got me out of one flare in Oct 2013.

If you're interested in reading up on LDN, the forum member InSoFla provided some great information on it a few years ago in a thread in the Ulcerative Colitis Resources thread. Her post is a few posts down... She has been in remission since starting I think, with only a few bumps in the road.

My last flare was in Feb 2014, and it was the first time I really didn't have anything 'new' to help get me out of a flare. I just stuck to bone broth soup (homemade) and doubled my asacol dose (which is negligible anyway), and InflaGuard. I started LDN after my flare had subsided. And, I agree, the way i envision it is that if I can use medicine to get myself to an appropriate balance so that I can add in supplements to take over, then I feel complete. Of course, my goal isn't to live off of supplements, but only time will tell when i reach that goal. Best of luck

Beans are an important source of resistant starch. I only have a problem with gluten wheat, not rice or quinoa. In fact organic corn actually seems to help UC, at least for me.

If you e-mail InSoFla she will gladly help you out in the LDN department... ;)

zengirl, my diagnosis wasn't specific to crohns or to UC, but instead both? So, don't despair, if you wan't to try something thats worked for others and that you've researched and feel may help you, keep pushing for it.