Has Anyone Experienced Erythema Nodosum or Something Similar?

Mary in a recent picture (she's the one on the right:)

Mary in a recent picture (she’s the one on the right:)

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.

Erythema Nodosum

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.

Erythema nodosum

Erythema nodosum (EN) (commonly known as cicada bites) is an inflammatory condition characterised by inflammation of the fat cells under the skin, resulting in tender red nodules or lumps that are usually seen on both shins. (picture is from Wikipedia)

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.

9 thoughts on “Has Anyone Experienced Erythema Nodosum or Something Similar?”

  1. Yikes, another possible horror to endure. I used to think stuff like this would not happen to me. Now I know very well it can. This hasn’t happened to me yet. I hope you can get rid of it soon. Hang in there!

  2. Hi Mary,

    Thank you again for sharing your story, and I wanted to share with you and the others reading some studies I’ve found. As you may have been aware, skin disorders are very common within the IBD group. Some studies suggest that even as many as one in three people with IBD also have/have dealt with a related skin issue along the way. So FOR SURE, you’re not alone in any way.

    But please take a look at some of this free information that is available to all of us via PubMed.

    Management of cutaneous disorders related to inflammatory bowel disease – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959344/


    Here’s another related story, if you go to the link here, you can read the abstract of this study and then there you’ll also find the pdf file which contains the ins and outs (full study data)… Important cutaneous manifestations of inflammatory bowel disease: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1743347/

    If you are enjoying reading the research, there are plenty more articles on this topic. Just use PubMed search functionality and you can search for more articles or any other topics related to health.

    Please keep us posted on how things go for you moving forward. Thanks again for sharing and being a part of the site:)


  3. I had erythema nodosum in 1993 when I didn’t have colitis. I am brand new to colitis, only experiencing my first symptoms in September.

    When talking about my medical history I told the specialist about my EN and he said it immediately made him think of Crohns, even though I’ve been over 20 years without anything like it. The EN came on (as I understand it, I was only 19 at the time) as a problem with my body’s own antibodies attacking me, in their efforts to heal me from a case of pharyngitis. I was prescribed 2 weeks of bed rest with my legs elevated and that pretty much took care of it. It was excruciatingly painful every time I stood up and I had to take my end of year uni exams in a wheelchair with my legs up.

    Never had EN again since and hope I never have it again. I don’t recall being put on any medication but I can’t be sure about that. It’s only now that I’m looking back on my medical history, trying to make sense of what’s happening to me now.

    Sorry it’s not more helpful but I can say with EN, I feel your pain, Mary.

  4. I have been experiencing a flare since late January and this time have the added bonus of EN on my ankles. Walking or even wearing shoes has been a painful experience. The doctor couldn’t find anything wrong and suggested seeing a Rheumatologist. His advice was ibuprofen, elevated feet and cold packs. (no way in hell I will ever take ibuprofen as it aggravates my UC). This is definitely related to UC.

    After much searching online, I came across some folks who recommended increasing protein intake. They explained that the body was losing Albumin due to the UC and low Albumin levels can bring on EN. (EN can also be caused by birth control, however that’s definitely not the case with me LOL)

    Long story short, I started last Friday on a high protein diet (70-80g per day) of fish, chicken, hard boiled eggs, yogurt, cheese and protein bars. After 48 hours, the diarrhea and have bleeding from the UC stopped. The swelling and pain in my ankles has been subsiding each day. I feel that I am on the right course for the first time since January. Diet is key to feeling well.

    By now I would hope that you are felling better but wanted to pass along this info for anyone else who might benefit.

  5. Hi Fred, thank you so much for sharing your experience. I haven’t received much response to my post – maybe EN is not that common for UC’ers on this site. After reading your post I’m going to increase my protein intake but not red meat because I find it aggravates my UC. I am feeling better now but had to endure a 6 week course of prednisone to get the EN to subside. I’m also following the body ecology diet (book was written by Donna Gates a few years ago) and find that it is helping me. I’m eating lots of cultured vegetables and kefir (my own from coconut milk as I can’t do any dairy). I eat nothing that turns to sugar because the goal of the body ecology diet is to starve yeast which is very prevalent in those with UC. My naturopath gave me some supplements for the EN (Quercetin and Rutin). Also for UC he gave me Berberine, Bromelein, Glutagenix and Aloe Vera with Ace Mannins. Also Biogest as an enzyme. You might look into these as well. I’m stable for the time being and keeping my fingers crossed. EN was crippling – all over my ankles, shins and knees. I hope it never comes back for you or for me. All the best to you.

  6. hey.. I have EN from 3 years..
    in the first 2 years wasn’t much pain like the 3rd year. no doctor knwe what is this for 3years. in blood test finding ESR so high when the test be if I have some nodule but without nodule ESR be normal..
    ct scan normal xray chest normal .
    finally last week one doctor told me may be this is EN and looking for it in the net. and from the photos in Google I am sure its EN.

    just eat fruit everyday in morning and you will be fine ;-)

    sorry for simple bad English and I hope you understand me.

  7. Hi dwd, thank you for sharing your experience. I do not think fruit is the answer for me. I am feeling better and the EN has subsided after doing two things – a 6 week course of Prednisone and at the same time I have changed my diet. I am following an anti-candida diet which has helped my UC and EN tremendously. This diet means NO sugar or anything that turns into sugar in the body like fruits and starches. Cranberries, lemons, limes, stevia, lucent and red potatoes are allowed. It also involved large amounts of probiotics, kefir, fermented vegetables to repopulate the intestines with good bacteria. Hope you look into this as it may help you too. All the best.

  8. thank you Mary to advise me.
    but really from tow weeks I am fine with eating fruit everyday. I stopped anythings with white sugar. and the fruits have nature sugar in it and you know how many vitamins in it. I feel really very fine.
    in the morning do not eat anything other. just fruit.
    one apple, one banana, one pear, one carrot, one orange, one kiwi.

  9. I’m certain I have EN, but I do not have any history of digestive system issues. I’m just beginning a journey, here. :-( I found a ton of people’s testimonies on medicine.net, I believe it was, and so many of them said SKIP the steroids. Some found relief balancing their potassium iodide levels. Please check that out.

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