Re: Is this normal?

August 27, 2012

Hi Sue, My 15 year old daughter had her first EN experience in March. It subsided at the beginning of July. It did take a while for her energy level to return to normal. She was found to be anemic and vitamin D deficient during the EN bout. I'm sure the iron deficiency contributed to her lack of energy. Once the EN passed her iron & vitamin D levels returned to normal. Thankfully she has had a great summer since. I hope you feel better soon. To: erythema_nodosum_Group Sent: Monday, August 27, 2012 1:38 PM Subject: Is this normal?

I have recently suffered my first bout of EN. The severe swellings on my legs and one arm have gone down and the bruising is slowly fading. However I still feel quite unwell. My joints ache, particularly my shoulders, wrists, knees and ankles, I get pains over my eye, (although they don't last long), my skin itches and I feel very tired after a small amount of activity, despite getting a full nights sleep. Is this normal after a bout of EN? I am beginning to feel like a real moaner so have stopped telling people how I feel and just try to get on with things but I'm not sure how long I can keep this up. I eat a good balanced diet, lots of fruit and veg and have started taking vitamin d and omega 3. I just want to know if this is normal or shoul I ask the dr for more investigations.

Any info gladly received.

Best wishes

Sue

August 27, 2012

Hi Sue!

I do the same thing. My joints ache terribly when the nodules start to dissapear, and my energy level really gets low. I have eliminated all synthetic hormones, and stopped eating soy products that have estrogenic effects. I have also eliminated gluten and it has helped emensely!

I hope this information is helpful!

Bethany Airhart

RBAirhart.myvi.net

Hi Sue, My 15 year old daughter had her first EN experience in March. It subsided at the beginning of July. It did take a while for her energy level to return to normal. She was found to be anemic and vitamin D deficient during the EN bout. I'm sure the iron deficiency contributed to her lack of energy. Once the EN passed her iron & vitamin D levels returned to normal. Thankfully she has had a great summer since.

I hope you feel better soon.

To: erythema_nodosum_Group

Sent: Monday, August 27, 2012 1:38 PMSubject: Is this normal?

I have recently suffered my first bout of EN. The severe swellings on my legs and one arm have gone down and the bruising is slowly fading. However I still feel quite unwell. My joints ache, particularly my shoulders, wrists, knees and ankles, I get pains over my eye, (although they don't last long), my skin itches and I feel very tired after a small amount of activity, despite getting a full nights sleep. Is this normal after a bout of EN? I am beginning to feel like a real moaner so have stopped telling people how I feel and just try to get on with things but I'm not sure how long I can keep this up. I eat a good balanced diet, lots of fruit and veg and have started taking vitamin d and omega 3. I just want to know if this is normal or shoul I ask the dr for more investigations.

Any info gladly received.Best wishesSue

-- But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Gal. 5:22-23

August 27, 2012

Hi Sue: That all seems normal response to me... I wonder if some of the energy drain might be related to depression...maybe other members of the group tcan weigh in on their perception of the loss of energy and their mental state...I also suffer from Crohns...and it has plenty of symptoms that will make ya depressed...So I am treated for depression related to that..For a long time I associated the lethargy and loss of energy to crohns...but based on reports in the group...it might be more likely related to EN?Right now the EN has returned (about 3 weeks ago)...and one spot on my arm has turned into PG (see pics)...the worst I have had...the center of the sore is about 2 inches and it has eroded a significant region of tissue...and the surrounding tissue is red and angry

looking...kinda like the rings of a planet... It has doubled in size in the past couple weeks.I am going back to the witch doctors (apt tomorrow) and see what voodoo they are going to suggest...I have always had the EN and PG resolve itself...by rest and inactivity... This lesion is on my arm, where any activity excites the sore and creates major disruption and oozing...I have tried...not moving and bed rest for a week...and it didn't seem to improve it....so I returned to light activity...thinking that might help it to improve...but alas nothing has helped.. For those nor familiar with PG see below for a little bit about it... I believe I am the exception more then the rule...so don't expect your EN to turn into PG...I think I am just one of the lucky ones... I just thought I would add my status...and if anyone has

suffered from PG...what they might have done to improve it! Sue....the skin element will resolve...and for me, it always leaves a scar...my biological Tattoos!..I have adjusted to the routine...and actually have had long periods with no EN or PG...years in fact....but Crohns seems always busy working its magic somewhere on my body...I would suggest some counseling or maybe medication for depression...as your are normal if all this nonsense bums you out! You would be truly crazy if it didn't! Good Luck All!

We are blessed to have and the group! Love and Peace W--------------------------------------------------------------------------------------------------------------------------Subject: Is this normal?To: erythema_nodosum_Group Date: Monday, August 27, 2012, 1:38 PM

I have recently suffered my first bout of EN. The severe swellings on my legs and one arm have gone down and the bruising is slowly fading. However I still feel quite unwell. My joints ache, particularly my shoulders, wrists, knees and ankles, I get pains over my eye, (although they don't last long), my skin itches and I feel very tired after a small amount of activity, despite getting a full nights sleep. Is this normal after a bout of EN? I am beginning to feel like a real moaner so have stopped telling people how I feel and just try to get on with things but I'm not sure how long I can keep this up. I eat a good balanced diet, lots of fruit and veg and have started taking vitamin d and omega 3. I just want to know if this is normal or shoul I ask the dr for more investigations.

Any info gladly received.

Best wishes

Sue======================================================Pyoderma Gangrenosum (or PG)This Skin Disorder Of Unknown Cause Is Related To IBD.By Amber J. Tresca, About.com GuideUpdated August 09, 2010There are many complications that can occur with Inflammatory Bowel Disease (IBD) including arthritis, liver disease, nutritional disorders,

anemia, and skin disorders. Skin disorders are a fairly common problem, and may affect up to 25 percent of people who suffer from IBD. One type of skin disorder that may occur in IBD is pyoderma gangrenosum.

What is pyoderma gangrenosum?

Pyoderma gangrenosum is a skin disorder that affects about 5 percent of people with ulcerative colitis and about 1 percent of people with Crohn's disease. Other diseases associated with pyoderma gangrenosum include rheumatoid arthritis, myeloid blood dyscrasias, and hepatitis. Pyoderma gangrenosum may first appear as a blister, red bump, or pustule, and eventually forms an ulcer. The ulcers may appear alone or in a group, and are commonly found on the extremities (more frequently on the legs than on the arms).

How does it start?

Pyoderma gangrenosum may start rapidly at the location of a previous minor injury, such as a pinprick or cut. The surrounding skin breaks down, and an ulcer quickly forms. Pyoderma gangrenosum ulcers have unique purplish-colored, indistinct edges. They also tend to be quite painful as well as slow to heal. Doctors are unsure what causes pyoderma

gangrenosum, but theorize that it may be an autoimmune condition, as it

is related to other autoimmune disorders.

How is pyoderma gangrenosum related to IBD?

As many as 50 percent of the cases of pyoderma gangrenosum occur in people with one form of IBD. At times, the occurrence of these ulcers corresponds to an active flare-up of IBD, and may respond when the underlying IBD is treated. Other cases, however, do not appear to be directly related to disease activity, and pyoderma gangrenosum may begin

or even worsen when the IBD is quiescent.

How are the ulcers treated?

To confirm the diagnosis of pyoderma gangrenosum through diagnostic testing, a dermatologist may be consulted. The ulcers may be swabbed and

cultured to test for infections, and biopsies may be used to rule out other causes. Because pyoderma gangrenosum is not caused by a bacterium,

antibiotics may not be effective as treatment.

Smaller pyoderma gangrenosum ulcers may be treated with:

Compression bandagingSteroid creams or injectionsOral anti-inflammatory antibioticsDressings of silver sulphadiazine cream or hydrocolloids

Larger ulcers that resistant treatment may require more intense therapy with:

SteroidsCyclosporinCyclophosphamideMethotrexateTacrolimus ointment==============================================================

Prevention

You can't prevent pyoderma gangrenosum. If you have the condition, try to avoid injuring your skin. Injury or trauma to your skin can provoke new ulcers to form. ==============================================================Treatment

If you have an underlying disease associated with pyoderma gangrenosum,

treating that condition may help control the ulcers. However, other treatments may be necessary to heal the wounds.

Drugs

Your doctor may prescribe the following:

Corticosteroids. Corticosteroids help relieve inflammation. Usually pyoderma gangrenosum is treated with oral corticosteroids, such as prednisone. Side effects of corticosteroids may

include increased blood pressure, weight gain with fat deposits in your

abdomen, face and back of your neck, and increased risk of infection. In some milder cases, a topical steroid â€” a medication you apply to your

skin â€” may be used. Side effects may include skin thinning and acne.Immunosuppressant drugs. These drugs help calm the

autoimmune response in your skin, which reduces inflammation. Because these drugs suppress your immune system, they can place you at higher risk of infections.Nonsteroidal anti-inflammatory medications. Medications in the sulfone family, such as dapsone, are often used. Milder cases might involve using minocycline, an anti-inflammatory and antibiotic medication.Tumor necrosis factor inhibitors. Drugs such as infliximab (Remicade), etanercept (Enbrel) and adalimumab (Humira) have shown some success in treating pyoderma gangrenosum, especially in people who have associated inflammatory bowel disease. Remicade is given

by infusion, and Enbrel and Humira are given as injections. These drugs

also can make you more vulnerable to infection and to certain cancers.High-dose intravenous immunoglobulin. When corticosteroids aren't enough to control pyoderma gangrenosum, intravenous immunoglubulin has shown promise as a treatment.

As your skin heals, you'll likely taper off the corticosteroids or immunosuppressants. You can expect your skin to recover several months after beginning therapy. Without treatment, the ulcers may widen, remain

the same or slowly heal. =========================================================SKIN DISORDERS COMMONLY SEEN IN IBD

ERHTHEMA NODOSUM

The name literally means â€œred bumps.â€ These tender red nodules, which

usually appear over the shins or ankles and sometimes on the arms, occur most in people with ulcerative colitis (2%-4%), although they may also affect those with Crohnâ€™s disease of the colon (1%-2%). Women are more commonly affected than men. Erythema nodosum generally appears in conjunction with a flare-up of IBD, but it also may occur just before a flare-up. It tends to improve when the bowel disease is brought under control.

PYODERMA GANGRENOSUM

This condition is marked by pus in the skin associated with deep ulcerations. Like erythema nodosum, pyoderma gangrenosum is most often found on the shins or ankles but sometimes occurs on the arms, too. Beginning as small blisters, these lesions eventually join together to form into deep,chronic ulcers. The disorder is somewhat more common among people with ulcerative colitis (5%) than those with Crohnâ€™s disease (1%). Pyoderma gangrenosum often follows a similar course to the

pattern of the IBD itself, and may heal as the symptoms of IBD are brought under control. Antibiotics, injections of medications into the ulcers, and topical ointments all may be used as treatments.

ENTEROCUTANEOUS FISTULAS

A fistula is a small tunnel connecting two parts of the body. An enterocutaneous fistula is an abnormal channel from the intestine to the

skinâ€”often from the rectum to the vagina, bladder, or buttocks. It also

may be a complication of surgery. This type of fistula may leak pus or fecal matter. Fistulas are more common in Crohnâ€™s disease than in ulcerative colitis, affecting approximately 30% of people with Crohnâ€™s. Treatment depends on the location and severity of fistulas.

SKIN TAGS

Skin tags are fairly common in people with Crohnâ€™s disease. They develop around hemorrhoid swellings in and around the anus. When the swellings go down, the skin around them thickens and forms into small flaps. Fecal matter may attach to skin tags, irritating the skin. Practicing good hygiene will help reduce discomfort and calm the irritation. Surgical removal of skin tags should be avoided because of the risk of damage or scarring the anal sphincter or the anal canal itself.

ANAL FISSURES

These are small tears in the lining of the anal canal. They may crack

and bleed, causing pain and itchiness. Warm baths and topical ointments

may be helpful.

APHTHOUS STOMATITIS

These small mouth ulcers, also known as canker sores, are most often found between the gums and lower lip or along the sides or base of the tongue. They are usually seen during severe flare-ups of IBD and generally subside as the bowel disease comes under control. Medicinal mouthwashes may be helpful, along with a balanced diet and a multivitamin/mineral supplement.==============================================================================================================

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August 28, 2012

Hi AllThank you so much for your responses. There seems to be so much that could be involved with EN that it gets a bit mind boggling! I have some of the symptoms that Wynand describes in her email, but I also identify with 's comments about feeling scared that the EN may return. I check any itch or bump that appears on my body and paranoia sets in! I am currently being treated for depressionAnd stress and have been for some time. I am getting back to doing the things I enjoy and that take my mind off the less pleasant aspects of life. I am not normally such a misery and I am making a conscious effort to lighten up!Thank you Wynand for your closing comments in your email. Describing all these health problems as 'all this nonsense' struck a chord with me and helped to put some things into perspective. Like everyone else, I can deal with EN and any other health concerns and still have a laugh, even if it is at my expense when friends come to warm their cold hands or defrost the food from the freezer on my burning legs!I'm off to take my various pills and potions and get ready to go for a walk before it rains again. I couldn't have said that a couple of months ago, not because it wasn't raining,(this is England after all!) but because I couldn't walk more than a few steps back then.Hope you are all feeling a little better very soon.Keep posting and thanks for the information and support.Best wishesSueSue 4 Faultlands CloseNuneatonCV11 4S

Wow! That was illuminating! I have thought for quite a while that i had IBD.... This just sort confirmed even more so how important my diet is in all of this. Thanks for sharing!! No gluten for me please! Bethany AirhartHttp://rbairhart.myvi.net