My hobbies are cooking, gardening, theatre, yoga, reading and have always been in interested in nutrition and homeopathy. However, I have been in a UC flare these last 3 years and it has been difficult for me to enjoy all of these hobbies and even life in general.
Colitis Symptoms Currently:
My current symptoms are bloody, mucousy, not very normal stools, urgency in the morning and evening and sometimes in between, rectal discomfort, muscle and joint pain. But worst of all I have developed in the last year and a half something called Erythema Nodosum and I’m interested in hearing from any of you who have or have experience this condition. Every couple of months I get new nodules on my lower extremities. They start out as small nodules looking like big bug bites and then increase in size to double the size of a walnut (in the shell), get very red and hot and are so painful. If they are near joints – ankles, knees – they are crippling. After being acute for a few days they begin to subside leaving bruising and then ultimately scarring. The GI doctor says its from the colitis. I’ve lost weight and can’t put it back on. I am not as strong and vibrant as I use to be. It’s gotten pretty depressing. I just began using Mesalamine enemas at night hoping it will arrest some of this inflammation. This is a huge step for me because I don’t believe in conventional medicine at all. Instead of addressing the source of the problem, they prescribe drugs to mask the symptoms and cause the disease to simply embed itself even deeper. But I feel I have no choice now that the disease is becoming systemic.
I was diagnosed with proctitis and left lower colitis 15 years ago and for the most part had only occasional flares that resolved on their own. After a 3 month flare in 2008 I took Low Dose Naltrexone and it put me in remission for over 2 years. The disease is only the lower 8 inches (rectum and 3.5 inches of colon). During my colonoscopy last week the doctor said it looks “very angry in there”. She did agree that the naturopathic approach I’ve taken may have kept the disease from spreading through my colin.
In the last 3 years I’ve tried SCD, GAPS and Paleo diets, and I was really diligent about it, to no avail. I still would have flares within this flare. I suspect my condition may be due to years of antibiotics and 3 courses of Accutane for acne in my younger years. I’ve worked with a naturopath these last 3 years but we have been unable to resolve the bleeding. I had lots of testing done, biological medicine, functional medicine and more. Many of my supplements are German biological medicine based. I’ve spent a fortune on all of this in the last 3 years and despite it all things have gone south. Some days are better than others. I find that if I keep life calm and as stressless as possible I feel a little better. But one cannot check out of life which is inherently stressful. Even good stress is stress to the body.
My question for fellow UC’ers is if anyone else has experienced this condition called Erythema Nodosum or had similar symptoms? How have you treated? I wonder if it’s because I let this flare go too long trying to address it naturopathically with diet and supplements only. In my research on the condition it could also stem for a bacteria called Mycoplasma for which I test positive. Anyone else had experience with that?
Medications, Supplements, Diets an whatever else I’m doing right now to treat my UC:
Just started, although reluctantly, Mesalamine enemas. I take lots of supplements – all the vitamins – A, B complex, C, D, E, K and a multi. Also Glutamine, Curcumin, COQ-10, Potassium Iodide and many others mostly from German biologic medicine. I take olive oil and olive leaf extract. I am a member of the Weston A. Price Foundation and follow their principles of making my own bone broths, soups, stews and fermented foods which I find very helpful in keeping me nourished but it takes lots of energy to do that kind of cooking and some days I just don’t have it.
Thanks so much to Adam for this site. Reading what others are experiencing has helped me feel less lonely in this ever so lonely a disease.
I am 55 years old and live in the Boston area. I work a busy schedule but do enjoy my work. I have a loving and supportive family and great friends. But I can’t commit to enjoying spending time with them because I never know how I’ll feel that day.