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Archive through July 11, 2005

The TVClubHouse: General Discussions ARCHIVES: 2005 Dec. ~ 2006 Feb.: Health Center: Crohn's Disease : Archive through July 11, 2005 users admin

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Herckleperckle
Member

11-20-2003

Friday, May 06, 2005 - 11:41 am   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
What is Crohn's Disease?

Crohn's disease is a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon.

The disease is named after Dr. Burrill B. Crohn. In 1932, Dr. Crohn and two colleagues, Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, published a landmark paper describing the features of what is known today as Crohn's disease. Crohn's and a related disease, ulcerative colitis, are the two main disease categories that belong to a larger group of illnesses called inflammatory bowel disease (IBD).

Because the symptoms of these two illnesses are so similar, it is sometimes difficult to establish the diagnosis definitively. In fact, approximately 10 percent of colitis cases are unable to be pinpointed as either ulcerative colitis or Crohn's disease and are called indeterminate colitis.

Both illnesses do have one strong feature in common. They are marked by an abnormal response by the body's immune system. The immune system is composed of various cells and proteins. Normally, these protect the body from infection. In people with Crohn's disease, however, the immune system reacts inappropriately. Researchers believe that the immune system mistakes microbes, such as bacteria that is normally found in the intestines, for foreign or invading substances, and launches an attack. In the process, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury. When this happens, the patient experiences the symptoms of IBD.

Although Crohn's disease most commonly affects the end of the small intestine (the ileum) and the beginning of the large intestine (the colon), it may involve any part of the GI tract.

In ulcerative colitis, on the other hand, the GI involvement is limited to the colon.

In Crohn's disease, all layers of the intestine may be involved, and there can be normal healthy bowel in between patches of diseased bowel.

In contrast, ulcerative colitis affects only the superficial layers (the mucosa) of the colon in a more even and continuous distribution, which starts at the level of the anus.


What Causes Crohn's Disease?

Although considerable progress has been made in IBD research, investigators do not yet know what causes this disease. Studies indicate that the inflammation in IBD involves a complex interaction of factors: the genes the person has inherited, the immune system, and something in the environment. Foreign substances (antigens) in the environment may be the direct cause of the inflammation, or they may stimulate the body's defenses to produce an inflammation that continues without control. Researchers believe that once the IBD patient's immune system is "turned on," it does not know how to properly "turn off" at the right time. As a result, inflammation damages the intestine and causes the symptoms of IBD. That is why the main goal of medical therapy is to help patients regulate their immune system better.

The Crohn's & Colitis Foundation of America (CCFA)-sponsored research has led to progress in the fields of immunology, the study of the body's immune defense system; microbiology, the study of microscopic organisms with the power to cause disease; and genetics. Many scientists now believe that the interaction of an outside agent (such as a virus or bacterium) with the body's immune system may trigger the disease, or that such an agent may cause damage to the intestinal wall, initiating or accelerating the disease process. Through CCFA's continuing research efforts, much more will be learned and a cure will eventually be found.


How Common is Inflammatory Bowel Disease (IBD)?

It is estimated that as many as one million Americans have IBD -- with that number evenly split between Crohn's disease and ulcerative colitis. Males and females appear to be affected equally. Crohn's disease may occur in people of all ages, but it is primarily a disease of adolescents and young adults, affecting mainly those between 15 and 35. However, Crohn's disease can also occur in people who are 70 or older and in young children as well. In fact, 10 percent of those affected -- or an estimated 100,000 -- are youngsters under the age of 18.


Who Gets IBD?

IBD tends to run in families, so we know that genes definitely play a role in the IBD picture. Studies have shown that about 20 to 25 percent of patients may have a close relative with either Crohn's or ulcerative colitis. If a person has a relative with the disease, his or her risk is about 10 times greater than that of the general population. If that relative happens to be a brother or sister, the risk is 30 times greater.

Researchers have been working actively for some time to find a link to specific genes that control the transmission of this illness. Recently, an important breakthrough was achieved when the first gene for Crohn's disease was identified by a team of IBD investigators. The researchers were able to pick out an abnormal mutation or alteration in a gene known as NOD2/CARD 15. This mutation, which limits the ability to recognize bacteria as harmful, occurs twice as frequently in Crohn's patients as in the general population. There is no way to predict which, if any, family members will develop Crohn's disease. The data further suggest that more than one gene may be involved. Thanks to new technologies, researchers are closing in on the additional genes that may be involved in IBD.


Race and Ethnicity

IBD also appears to affect certain ethnic groups more than others. For example, American Jews of European descent are four to five times more likely to develop IBD than the general population. IBD has long been thought of as a disease predominantly affecting whites; the prevalence rate (the number of people with a disease at a given time) among whites is 149 per 100,000. However, there has been a steady increase in reported cases of both Crohn's disease and ulcerative colitis among African Americans. The prevalence rates among Hispanics and Asians are lower than those for whites and African Americans.


Environment

For reasons that are not yet clearly understood, IBD is largely a disease of the developed world, and is found principally in the U.S. and Europe. Similarly, Crohn's disease and ulcerative colitis are reported to be more common in urban than in rural areas, and in northern than in southern climates. Moreover, the frequency of disease increases when specific groups of people move from underdeveloped to developed countries, and vice versa.


What Are the Symptoms?

Persistent diarrhea (loose, watery, or frequent bowel movements), crampy abdominal pain, fever, and, at times, rectal bleeding: These are the hallmark symptoms of Crohn's disease, but they vary from person to person and may change over time. Loss of appetite and subsequent weight loss also may occur. However, the disease is not always limited to the GI tract; it can also affect the joints, eyes, skin, and liver. Fatigue is another common complaint. Children who have Crohn's disease may suffer delayed growth and sexual development.

Some patients may develop tears (fissures) in the lining of the anus, which may cause pain and bleeding, especially during bowel movements. Inflammation may also cause a fistula to develop. A fistula is a tunnel that leads from one loop of intestine to another, or that connects the intestine to the bladder, vagina, or skin. Fistulas occur most commonly around the anal area. If this complication arises, you may notice drainage of mucus, pus, or stool from this opening.

Symptoms may range from mild to severe. Because Crohn's is a chronic disease, patients will go through periods in which the disease flares up, is active, and causes symptoms. These episodes are followed by times of remission -- periods in which symptoms disappear or decrease and good health returns. In general, though, people with Crohn's disease lead full, active, and productive lives.


Types of Crohn's Disease and Associated Symptoms

The symptoms and complications of Crohn's disease differ, depending on what part of the intestinal tract is inflamed. That's why it is important to know which part of your intestine is affected by Crohn's disease. Your doctor may also refer to your illness by various names based on the principal area involved. The following are five types of Crohn's disease, together with their presenting symptoms:

Ileocolitis: The most common form of Crohn's, affecting the ileum and colon. Symptoms include diarrhea and cramping or pain in the right lower part or middle of the abdomen. Often accompanied by significant weight loss.

Ileitis: Affects the ileum. Symptoms same as ileocolitis. Complications may include fistulas or inflammatory abscess in right lower quadrant of abdomen.

Gastroduodenal Crohn's disease: Affects the stomach and duodenum (the first part of the small intestine). Symptoms include loss of appetite, weight loss, and nausea. Vomiting may indicate that narrowed segments of the bowel are obstructed.

Jejunoileitis: Produces patchy areas of inflammation in the jejunum (upper half of the small intestine. Symptoms include abdominal pain (ranging from mild to intense) and cramps following meals, as well as diarrhea. Fistulas may form.

Crohn's (granulomatous) colitis: Affects the colon only. Symptoms include diarrhea, rectal bleeding, and disease around the anus (abscess, fistulas, ulcers). Skin lesions and joint pains are more common in this form of Crohn's than in others.


How is Crohn's Disease Diagnosed?

There is no single test that can establish the diagnosis of Crohn's disease with certainty. To determine the diagnosis, physicians evaluate a combination of information from the patient's history and physical exam. They examine the results of laboratory tests, X-rays, and findings on endoscopy and pathology tests, and exclude other known causes of intestinal inflammation. X-ray tests may include barium studies of the upper and lower GI tract. Endoscopy tests may include flexible sigmoidoscopy and, sometimes, colonoscopy, which allow the doctor to directly examine the colon with a lighted tube that is inserted through the anus. During these tests, biopsies may be obtained. This procedure involves the removal of a small piece of tissue for closer analysis. It is important to make sure that an infection is not causing the patient's symptoms, so one routine test is to examine the stool for harmful organisms. Because Crohn's disease often mimics other conditions and symptoms may vary widely, it may take some time to arrive at the correct diagnosis.


What Medications are Used to Treat This Disease?

Because there is no cure for Crohn's disease, the goal of medical treatment is to suppress the inflammatory response. This step accomplishes two important goals: It allows the intestinal tissue to heal and it also relieves the symptoms of fever, diarrhea, and abdominal pain. Once the symptoms are brought under control (this is known as inducing remission), medical therapy is used to decrease the frequency of disease flares (this is known as maintaining remission, or maintenance).

Several groups of drugs are used to treat Crohn's disease today. They are:

Aminosalicylates (5-ASA): This class of anti-inflammatory drugs includes sulfasalazine and oral formulations of mesalamine, such as Asacol,® Colazal,.® Dipentum,® or Pentasa,® and 5-ASA drugs also may be administered rectally (Canasa® or Rowasa® ). These medications typically are used to treat mild to moderate symptoms.


Corticosteroids: Prednisone and methylprednisolone are available orally and rectally. Corticosteroids nonspecifically suppress the immune system and are used to treat moderate to severely active Crohn's disease. (By "nonspecifically," we mean that these drugs do not target specific parts of the immune system that play a role in inflammation, but rather, that they suppress the entire immune response.) These drugs have significant short- and long-term side effects and should not be used as a maintenance medication. If you cannot come off steroids without suffering a relapse of your symptoms, your doctor may need to add some other medications to help manage your disease.


Immune modifiers: Azathioprine (Imuran®), 6-MP (Purinethol®), and methotrexateImmune modifiers, sometimes called immunomodulators, are used to help decrease corticosteroid dosage and also to help heal fistulas. In addition, immune modifiers can help maintain disease remission.


Antibiotics: metronidazole, ampicillin, ciprofloxacin, others.

Biologic therapies. In August 1998, the FDA approved the first biologic therapy for Crohn's disease. This was infliximab (Remicade®), which is indicated for moderately to severely active Crohn's in patients who have not responded adequately to conventional therapy. It is also approved for reducing the number of draining enterocutaneous fistulas. In June of 2002, infliximab was approved by the FDA for a new indication – maintaining remission. Infliximab is given by infusion.

Infliximab is a chimeric (a hybrid consisting of 75 percent human, 25 percent mouse protein) monoclonal antibody. The antibody works by blocking the immune system's production of tumor necrosis factor-alpha (TNF-alpha). This is a cytokine (chemical) that intensifies inflammation.

Several other biologic agents for both Crohn's disease and ulcerative colitis are being studied in clinical trials currently, but none are yet commercially available.


Complications of Crohn's Disease

The most common complication of Crohn's disease is obstruction or blockage of the intestine due to swelling and the formation of scar tissue. The result is thickening of the bowel wall and a significantly narrowed intestinal passage. Symptoms of intestinal obstruction include crampy pain around the mid-abdomen, frequently associated with vomiting. The abdomen may also become bloated and distended. Medications may relieve the obstruction by reducing the local area of inflammation, but surgery may be required if the obstruction is severe and does not respond to medical treatment. Surgery may also be indicated if the blockage recurs frequently.

Another complication is sores or ulcers within the intestinal tract. Sometimes these deep ulcers turn into tracts -- called fistulas -- that connect different parts of the intestine. But fistulas may also tunnel into surrounding tissues such as the bladder, vagina, or skin. These abnormal passages, which affect about 30 percent of people with Crohn's disease, often become infected. If the fistula is small, medical treatment may be sufficient to heal it. Large or multiple fistulas, on the other hand, may signal the need for surgery, particularly if they are accompanied by fairly persistent symptoms, such as fever or abdominal pain. Occasionally a fistula forms an abscess, or collection of pus, near the intestine. This is a pocket of infection that requires drainage either through a catheter inserted by a radiologist or a special drain that is surgically inserted. The areas around the anus and rectum are often involved. In addition to fistulas, cracks or fissures may also develop in the lining of the mucus membrane of the anus.

Another type of complication commonly encountered in people with Crohn's disease is related to malnutrition or the presence of nutritional deficiencies. These are deficiencies of proteins, calories, and vitamins. They generally do not develop unless the disease is extensive and of long duration, conditions that may contribute to inadequate dietary intake and poor absorption of nutrients. Medical treatment is usually effective in the replacement of nutrients. For example, a deficiency in vitamin B-12 can be corrected by an injection of this vitamin. Similarly, an iron deficiency can be reversed by taking this mineral in liquid or tablet form. Nutritional supplements, containing both vitamins and minerals, are available in concentrated form.


What Is the Role of Surgery?

Two-thirds to three-quarters of patients with Crohn's disease will require surgery at some point during their lives. Surgery becomes necessary in Crohn's disease when medications can no longer control the symptoms. It may also be performed to repair a fistula or fissure. Another indication for surgery is the presence of an intestinal obstruction or other complication, such as an intestinal abscess. In most cases, the diseased segment of bowel and any associated abscess is removed; this is called a resection. The two ends of healthy bowel are then joined together in a procedure called an anastomosis. While resection and anastomosis may allow many symptom-free years, this surgery is not considered a cure for Crohn's disease, because the disease frequently recurs at or near the site of anastomosis.

An ileostomy also may be required when surgery is performed for Crohn's disease of the colon. After the surgeon removes the colon, he brings the small bowel to the skin, so that waste products may be emptied into a pouch attached to the abdomen. This procedure is needed if the rectum is diseased and cannot be used for an anastomosis.

The overall goal of surgery in Crohn's disease is to conserve bowel and return the individual to the best possible quality of life.


The Role of Nutrition

There is no evidence that any particular foods cause or contribute to Crohn's disease or other types of IBD. Once the disease has developed, however, paying special attention to diet may help reduce symptoms, replace lost nutrients, and promote healing.

Good nutrition is essential for anyone who has a chronic disease, but it is especially important in Crohn's disease for several reasons. First, the appetite is often reduced in people with Crohn's. Second, chronic diseases tend to increase the energy or caloric needs of the body. This is particularly true during episodes of disease "flares." And third, Crohn's is associated with diarrhea and poor absorption or dietary protein, fat, carbohydrates, and water. All these symptoms rob the body of fluids, nutrients, and a wide variety of vitamins and minerals. Restoring and maintaining proper nutrition is a vital part of the medical management of Crohn's disease.

When Crohn's disease is active, soft, bland foods may cause less discomfort than spicy or high-fiber foods. Except for restricting milk in lactose-intolerant patients, most gastroenterologists try to be flexible in planning the diets of their Crohn's patients. A healthy diet should contain a variety of foods from all food groups. Meat, fish, poultry, and dairy products (if tolerated) are sources of protein; bread, cereal, starches, fruits, and vegetables are sources of carbohydrate; margarine and oils are sources of fat.


Skin Lesions

Extraintestinal features are common in Crohn's disease and include arthritis, skin problems, inflammation in the eyes or mouth, gallstones and kidney stones. Skin lesions are often seen in patients with Crohn's disease. When granulomatous lesions of Crohn's disease involve sites other than the gastrointestinal tract then the disease is then termed metastatic Crohn's disease.

Skin involvement occurs in about 40% of patients with Crohn's disease. Often the involvement is an extension of the intestinal disease and presents as fissures and abscesses around the perineal and perianal region. However, any part of the skin can be affected. Lesions may present as spots or plaques found on the trunk, arms and legs, and they may be mildly itchy. In some cases distinctive dermatoses are present. These include:

Pyoderma gangrenosum
Erythema multiforme
Erythema nodosum
Necrotizing small vessel vasculitis.
Occasionally, skin lesions may occur before any signs or symptoms of the intestinal disease.

Oral involvement occurs in 8-9% of Crohn's disease and includes:

Gingival or mucosal swelling
Cobblestoning of the buccal mucosa
Aphthous ulcers
Mucosal tags
Angular cheilitis
Granulomatous cheilitis

1

Granulomatous cheilitis in Crohn's disease


12



Treatment of Crohn's Skin Disease

Treatment for Crohn's skin disease is palliative not curative. Treatment of the intestinal manifestations usually improves the skin lesions. These may include oral corticosteroids, azathioprine, sulfasalazine and new anti tumour necrosis factor agents such as infliximab.

23

Superficial bullous pyoderma gangrenosum; Typical ulcerated pyoderma gangrenosum


Pyoderma gangrenosum often affects a person with an underlying internal disease such as:

Inflammatory bowel diseases (ulcerative colitis and Crohn's disease)
Rheumatoid arthritis
Myeloid blood dyscrasias
Chronic active hepatitis.
Wegener's granulomatosis
Miscellaneous less common associations.


Pyoderma gangrenosum usually starts quite suddenly, often at the site of a minor injury. It may start as a small pustule, red bump or blood-blister. The skin then breaks down resulting in an ulcer. The ulcer can deepen and widen rapidly. Characteristically, the edge of the ulcer is purple and undermined as it enlarges. It is usually very painful. Several ulcers may develop at the same time.

Untreated, the ulcers may continue to enlarge, persist unchanged or may slowly heal. Treatment is usually successful in arresting the process, but complete healing may take months.


Treatment

Treatment is non-surgical. The necrotic tissue should be gently removed. Wide surgical debridement should be avoided because it may result in enlargement of the ulcer.

Often conventional antibiotics such as flucloxacillin are prescribed prior to making the correct diagnosis. These may be continued if bacteria are cultured in the wound (secondary infection) or there is surrounding cellulitis (red hot painful skin), but they are not helpful for uncomplicated pyoderma gangrenosum.

Small ulcers are best treated with:

Topical steroid creams
Intralesional steroid injections
Special dressings eg. silver sulphadiazine cream or hydrocolloids.
Oral anti-inflammatory antibiotics such as dapsone or minocycline.
If tolerated, careful compression bandaging for swollen legs
Potassium iodide solution
More severe disease requires immunosuppressive therapy:

Oral steroids. These have important side effects and should be taken carefully according to the doctor's instructions. They may be required for several months in high dose.
ciclosporin. This is very expensive and not available in New Zealand for this indication. It also has important side effects.
Cyclophosphamide
Methotrexate.
Mycophenolic mofetil
Tacrolimus ointment is an immune modulating drug that inhibits calcineurin and has been reported to improve pyoderma gangrenosum. It is not yet available in New Zealand (2002).


General Outlook for Crohn's Disease

The outlook for Crohn's disease varies widely. Crohn's disease can range from being benign (such as when limited Crohn's disease occurs only around the anus in older people) or it can be very severe. At the extreme ends, some patients may experience only one episode and others suffer continuously. Although recurrences tend to be the norm, disease-free periods can be years to decades-long in some patients. Although Crohn's disease cannot be cured even with surgery, treatments are now available that can offer significant help to most patients. Crohn's disease is rarely a direct cause of death and most people can live a normal lifespan with this condition.

Mild Crohn's Disease. The fewer movements, the milder the disease. In mild disease, abdominal pain is absent or minimal. The patient has a sense of well-being that is normal or close to normal. There are few, if any, complications outside the intestinal tract. The physician does not detect any mass when pressing the abdomen. The red blood cell count is normal or close to normal, and the patient is not underweight.

Severe Crohn's Disease. In severe Crohn's disease, the patient has movements frequent enough to require opiates or other potent anti-diarrheal medication. Abdominal pain is severe and usually located in the lower right quadrant of the abdomen. (It should be noted, however, that the location of the pain might not indicate the site of the actual problem, a phenomenon known as referred pain.) The red blood cell count is low. The patient has a poor sense of well-being and experiences complications that may include weight loss, joint pain, inflammation in the eyes, reddened or ulcerated skin, fistulas, abscesses, and fever. The surgical and medical treatments of Crohn's disease, as with ulcerative colitis, have complications of their own that can be severe.

Complications of Crohn's Disease

Complications in the Intestine

Malabsorption and malnutrition. Malabsorption is the inability of the intestines to absorb nutrients. In IBD, this occurs as a result of bleeding and diarrhea, as a side effect from some of the medications, and as a result of surgery. Malnutrition usually develops slowly and tends to become severe, with multiple nutritional deficiencies. It is very common, ranging from 25% to 80% of CD patients.

Toxic Megacolon. A serious although rare complication that can occur if inflammation spreads into the deeper layers of the colon. In such cases, the colon enlarges and becomes paralyzed. In severe cases, it may rupture, a surgical emergency that carries a 30% mortality rate. Symptoms include weakness and abdominal pain and bloating; the patient may be disoriented or groggy. X-rays are needed to confirm the diagnosis, but barium enemas and colonoscopies should not be performed. Medications used for pain and diarrhea, such as opiates and drugs that reduce spasms of the colon may increase the risk of toxic megacolon. Its incidence is decreasing with treatment advances.

Fistulas and Abscesses. Fistulas (channels beneath the skin) frequently develop from the deep ulcers that can form with CD. If fistulas develop between the loops of the small and large intestines, they can interfere with absorption of nutrients. They often form pockets of infection or abscesses, which may become life threatening without treatment.

Heavy Rectal Bleeding. Massive bleeding can occur in 1% to 2% of cases, which may be recurrent in CD.

Intestinal Cancers. Higher than normal risk for colon cancer. Patients should consider annual screening for colon cancer with colonoscopy beginning as early as age 25, depending on other risk factors, particularly any evidence of precancerous tissue (dysplasia). New tests for certain genetic markers may help determine increased risk. Note: inflammation can produce changes in tissue that resemble precancerous or cancerous changes, increasing the chance for a false diagnosis of cancer. Inflammatory bowel disease in the rectum and lower (sigmoid) colon does not significantly increase the risk for cancer. Other cancers, such as lymphoma or carcinoma of the small intestine or anus, may also be more common, but the risk is small.

Intestinal Blockage. Inflammation from Crohn's disease produces segments of scar tissue known as strictures that can constrict the passages of the intestines, causing bowel obstruction with severe cramps and vomiting. Strictures usually occur in the small intestine but can also occur in the large intestine.


Complications Outside the Intestine

Eyes. Inflammation in parts of the eye. Inflammation may be an early sign of CD in some cases. Retinal disease, including detachment (rare). People with accompanying arthritic complications may be at higher risk for eye problems.

Joints. Stiffness and arthritic-like symptoms in the joints from inflammation. The back is commonly affected. CD patients are also at risk for clubbing (abnormal thickening and widening at the ends of fingers and toes.)

Bones. Low body weight and calcium loss from corticosteroids contributes to osteoporosis (bone loss). There has been some concern that the disease itself may promote bone loss, although a 2000 study found no evidence for this.

Anemia. Internal blood loss from ulcers in the intestine is a particular problem in Crohn's disease because of the impaired ability to absorb vitamins and minerals necessary for blood production.

Liver Disorders. Higher than average risk for mild but not severe liver abnormalities.

Mouth Sores. (Including canker sores, benign growths, and yeast infections.) Canker sores are common, and when they occur they persist. Those at higher risk are males and younger people. Mouth yeast infections also common in CD.

Skin Disorders. CD patients are likely to develop red knot-like swellings. Such swellings or other skin lesions, such as ulcers, may spread to sites far removed from the colon, including upper and lower extremities. People with Crohn's disease tend to have an increased incidence of psoriasis, and one study has found a genetic link between the two disorders.

Thromboembolism (Blood Clots). Clots may occur, most likely in lower extremities and pelvic area.

Kidney Disorders. Kidney stones and some impairment. Amyloidosis, deposits of amyloid (a protein) in the kidney (or other organs) a rare but very serious kidney condition.

Lung Involvement. Common but may develop for years without symptoms.

Gallbladder Disease and Gallstones. Double the normal risk.

Delayed Growth and Development in Children. Impaired physical growth in up to half of CD children and nearly all are underweight. About 30% reach puberty later, but once it occurs, hormonal cycles tend to be normal.

Infertility. Infertility rates are only slightly lower than average. Active disease at conception increases risk for miscarriage or prematurity. Men may have lower sperm count during active disease or because of impaired nutrition, but in general fertility is normal.

Menstrual Problems in Women. Menstrual abnormalities, including premenstrual disorder, abnormal bleeding, and pain. Pain with intercourse occurs in about half of patients. Sexual function may be impaired, not only because of the emotional impact, but also by treatment side effects and complications of the diseases, such as fistulas.

Emotional and Neurologic Factors. The emotional consequences cannot be overestimated, particularly in children. Eating becomes associated with fear of abdominal pain before the end of the meal. Frequent attacks of diarrhea can cause such a strong sense of humiliation that social isolation and low self-esteem may result. Adolescents with IBD may have added problems that increase emotional distress, including weight gain from steroid treatments and delayed puberty. Autoimmune response may also affect the central nervous system.

Herckleperckle
Member

11-20-2003

Friday, May 06, 2005 - 12:24 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
I have been diagnosed with MILD Crohn's. (I don't have the diarrhea part. But I do have the pain in the groin and frequency part.) I should be thankful for the mild diagnosis, I know. And that it was caught.

The only med I am on for it is the anti-inflammatory, Pentasa. Not having any problems from it.

But what is working on my brain is that I can now tie together symptoms/seemingly unrelated other diagnoses/my ethnic background (spondylitis; Raynaud's syndrome; CMV; hernia surgery that resulted in adhesions and blockages; and red, itchy patches of tiny spots that appeared periodically on the backs of my calves) that are all considered factors for/symptomos of Crohn's. And that blows my mind. Plus, from what I've read my eyeaches, headaches, joint pain, fatigue and even my breathlessness may be related.

I have been crazy itchy periodically, too. (While I was at my mom's, it seemed worse, but then so did my headaches.) Could be the meds, I dunno.

I have found 3 'lesions' on my upper arm and 1 on my back that are slowly retreating. (The patchy eczema-like spots on my ankle and knee have since faded.) Never had eczema in my life, btw. But those pictures I found (and posted above) have just scared the hell out of me.

Been rather wrapped up in ME lately, which is not comfortable. Just adjusting to all this information and really don't know if the progression of the disease is inevitable. Been kinda consumed with research and reading.

I am sure my 2 upcoming doc appts. will be helpful in either allaying some unfounded fears or in helping me focus on establishing a routine for taking care of myself in relation to this condition.

Can I say I hate this whole thing? Not what I planned. Not what I want to do.

Gidget
Member

07-28-2002

Friday, May 06, 2005 - 1:45 pm   Edit Post Move Post Delete Post View Post Send Gidget a private message Print Post    
(((Niecey)))

Pamy
Member

01-02-2002

Friday, May 06, 2005 - 8:25 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
OH HP I am so sorry. WOW I thought fibro was bad!

Hope you can find some relief soon
xoxoxoox

Konamouse
Member

07-16-2001

Saturday, May 07, 2005 - 11:36 am   Edit Post Move Post Delete Post View Post Send Konamouse a private message Print Post    
(({HP}))

Very nice informational post about the disease.

'squeek'

Knightpatti
Member

12-06-2001

Sunday, May 08, 2005 - 8:14 pm   Edit Post Move Post Delete Post View Post Send Knightpatti a private message Print Post    
(((HP)))

Herckleperckle
Member

11-20-2003

Wednesday, May 11, 2005 - 7:03 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Thanks, GG, Pamy, Konamouse and Knightpatti!

Well, I have been struggling the last couple of days because my symptoms have worsened. (Big abdominal pain and LOTS of visits to the little girl's room, if you can live with concrete. LOL.)

Plus, I got an awful, awful case of the itchies. I mean, maniacally itchy--with nothing to see that was causing it! I think I have now identified the problem as my Effexor XR and not my Crohn's med (Pentasa)--because I forgot to take the Effexor XR in the morning as I usually do. When I took it midmorning, the itching started and worsened, not letting up til about 8:30 pm, even though I had taken 2 Benadryl earlier and then, as a last resort, took a hot bath. (The hot bath helped.) I read some posts online about the XR version as containing things that can cause extreme itchiness. So I will talk to my PCP tomorrow about that--and hopefully wean myself off the morning dose. I do not want to have to go through that again. It was horrid.

Herckleperckle
Member

11-20-2003

Monday, June 27, 2005 - 12:51 am   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Found this in my email this morning:

Reported June 27, 2005

Natural Healing for Crohn’s Disease


TUCSON, Ariz. (Ivanhoe Broadcast News) -- It’s a pain so intense it can stop you in your tracks, force you to bed, and even to the operating room. Three million Americans have Crohn’s disease. You can control it -- but there is no cure. Here is one young teen who's found peace with her disease without any drugs at all.

Life is full of ups and downs. Seventeen-year-old Allie Spitz knows how to deal with both. She says, "I never thought anything like this could even happen -- like I had no idea about it."

Just two years ago, this five-foot stick of dynamite dropped to 85 pounds and was forced into the hospital. Allie's mother, Esther Battock, says, "You get scared that there’s something seriously wrong with your child."


Allie has Crohn's disease. After medications failed, her mom turned to alternative ways to help her child. "He just gave me these Chinese teas, and I drink them three times a day," Allie tells Ivanhoe.

Allie has also given up sugar, spicy foods and dairy. Stanford-trained psychiatrist Lewis Mehl-Madrona, M.D., Ph.D., has seen firsthand how diet affects Crohn's disease. To get better, he says people need to take a step back. "It involves eating the way people ate 40,000 years ago," says Dr. Mehl-Madrona, who is now at University of Arizona in Tucson.

Crohn’s disease is an inflammation of the intestines that causes painful ulcers and bleeding. Dr. Mehl-Madrona says some people simply can’t tolerate processed foods. "It can be like a runaway freight train where already you are sensitive and you eat foods that are particularly bad for you, and it gets worse."


Key points of the specific diet include staying away from grains and dairy and choosing meat and vegetables instead. Dr. Mehl-Madrona says, "It’s basically a hunter-gatherer diet."

He says 80 percent of the people he's put on special diets have improved. It's a change for Allie, but she’s sticking to her diet, working out, and doing it all pain-free.

There are several different types of diets for Crohn's patients, and what works for one person may not work for another.



This article was reported by Ivanhoe.com, who offers Medical Alerts by e-mail every day of the week.

If you would like more information, please contact:


Lewis Mehl-Madrona, M.D., Ph.D.
University of Arizona
(520) 722-9787
mehlmadrona@aol.com
http://www.healing-arts.org

Zachsmom
Moderator

07-13-2000

Wednesday, July 06, 2005 - 8:53 am   Edit Post Move Post Delete Post View Post Send Zachsmom a private message Print Post    
Bumping up for 'me too' ...the member, not me..well for me too as I too have Crohns, but for the other me too

Metoo
Member

02-22-2005

Wednesday, July 06, 2005 - 9:09 am   Edit Post Move Post Delete Post View Post Send Metoo a private message Print Post    
Thanks - this article helps but I still have questions. It seems like I have an episode that will last two to three weeks and then it slacks off. This may sound funny but it seems like I have too much mucus in my body. Is that a possible symptom?

Urgrace
Member

08-19-2000

Wednesday, July 06, 2005 - 9:58 am   Edit Post Move Post Delete Post View Post Send Urgrace a private message Print Post    
Dairy foods are mucus producers. Have you been eating a lot of them?

Metoo
Member

02-22-2005

Wednesday, July 06, 2005 - 10:18 am   Edit Post Move Post Delete Post View Post Send Metoo a private message Print Post    
No - I have always been a "bad" girl for not drinking my milk. Eat cheese every so often like on salad, sandwich etc. Cottage cheese maybe one small container every two months, so you see I don't over do it.

Herckleperckle
Member

11-20-2003

Wednesday, July 06, 2005 - 11:06 am   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
I am so glad you posted, Metoo and Zmom!

Metoo, I have had the same mucous problem with this condition. And I was the same bad child--I'd pour my milk down the drain or flush it down the toilet to fool my mom. I still don't drink milk, though I will use it in cereal and eat cheese and cottage cheese (more often than you, but certainly not frequently).

But I haven't read about that symptom anywhere. So I dunno.

Metoo, are you officially diagnosed? When did you find out? (How many years have you been living with it?)

The condition is an excellent teacher that eating is bad. I think you'll understand what I mean, Zmom and Metoo. I hate to eat because of what I have to go thru afterwards. (Course I like food, so I still do!), but the 'afterwards' consumes such a big part of my daily routine that it is frustrating. I think I'd have so much more independence if I could just subsist on vitamins.

With my mild diagnosis, I only rarely have the pain associated with this condition. (I've always said I have a cast iron stomach and have always been able eat anything (well, except for milk, liver and liverwurst--ugh!). . . guess my insides finally rebelled.) When I do have pain, it is fleeting.

Metoo
Member

02-22-2005

Wednesday, July 06, 2005 - 11:41 am   Edit Post Move Post Delete Post View Post Send Metoo a private message Print Post    
I have not been officially diagnosed, but have been thinking about mentioning it to my doctor next visit. I feel I might have Crohns or something related. It started about three to four years ago. At first I thought I had a bad stomach virus but it lasted almost a month. Kept having pain, watery stools, lost weight. Saw a doctor at one of the quick stop type of medical clinics - he took some basic tests but nothing showed up. The symptoms went away after awhile but started reoccuring on a regular basis - making me feel worse each time. I have just been dealing with it whenever occurs. I have gotten so I do hate to eat. I will be hungry and want the food but like you say HP - the after effect. As for the mucus - it only occurs when I am having the other symptoms.


Metoo
Member

02-22-2005

Wednesday, July 06, 2005 - 11:53 am   Edit Post Move Post Delete Post View Post Send Metoo a private message Print Post    
By the way - I have scanned through some books dealing with Crohns - got some info from them - but to me there is nothing like hearing about personal experiences dealing with the symptoms.

Herckleperckle
Member

11-20-2003

Wednesday, July 06, 2005 - 1:29 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Metoo, the first thing that prompted my testing was not anything I noticed or reported! It was that my routine physical blood tests revealed I was anemic.

In trying to track down why I was anemic (which my doc said meant I was bleeding internally somewhere), I was referred to a gastroenterologist. I had (1) a colonoscopy (results: fine), another test (forget the name--but tests how long it takes you to digest a cube of sugar--covered with radioactive something so they can take pictures of your abdomen every half hour. If you digest your food too quickly or too slowy, it can indicate a problem) (results: fine); and, finally (3) a capsule endoscopy test (swallow a camera test) which revealed that I had both an ulcer and Crohn's.

So, the first step would be to be referred to a gastro doc. Leave it to the doc how to proceed, but your symptoms sure sound like you have some kind of IBD (inflammatory bowel disease) problem.

Zachsmom
Moderator

07-13-2000

Wednesday, July 06, 2005 - 2:25 pm   Edit Post Move Post Delete Post View Post Send Zachsmom a private message Print Post    
Mucus happens and that's all I am saying about that

I have had Crohns for so long I do not know what 'normal' means. You get to a point where you make adjustments and know your limitations.

Eating is painful, but since I am on TPN, I do not have to worry too much about that...lol..There are times I crave a big fat juicy steak, the fattier the better and I pay for it afterwards. I have a 1/2 hour rule, I do not go out to eat anywhere that I cannot be home in a 1/2 hour.

I have noticed as long as I get enough sleep and have some sort of stress buster hobby I have less flares. You never know when one can strike. And they hurt like the dickens.

Konamouse
Member

07-16-2001

Wednesday, July 06, 2005 - 3:21 pm   Edit Post Move Post Delete Post View Post Send Konamouse a private message Print Post    
Always ask for a test to rule out Celiac!

Dairy products do not produce the mucus you may find in your GI tract with Crohns. But an undiagnosed food allergy might.

Try to avoid high residue foods (high fiber, nuts/seeds, gristle & tendons found in meats) - they increase irritants that reach the colon and cause distress. For some people, milk & cheese products are also high residue.

'squeek'

Herckleperckle
Member

11-20-2003

Wednesday, July 06, 2005 - 6:22 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
1

Watching2
Member

07-07-2001

Thursday, July 07, 2005 - 1:11 am   Edit Post Move Post Delete Post View Post Send Watching2 a private message Print Post    
Wow... I never saw this section before! I've been dealing with Crohn's since I was pregnant wtih my first child who is now 24! My symptoms are different at different times and the one thing I really really complain about is ..all the pain and things I can't eat and I never lost a lot of weight! If I have to deal with this, I should be skinny!!!!! boo hiss! LOL I was diagnosed at 25 after having my DD and the GI specialist at the time said he was 99% sure I had it after he did a sigmoidoscopy....so not fun! When I first went on meds (I take Azulfidine Entabs - sulfasalazine) I felt like a new person. Well, that didn't last, of course. I've gone off and on them and have been on them for most of the last 10 yrs at least. I also take Librax and have to avoid a lot of good diet foods like salads, fruits - all the stuff they have you fill up on when you try to diet. Sometimes I can eat the stuff and NOTHING...and other times, I pay bigtime! Through the years the first doc started wondering if more of my trouble was because of nerves because he didn't see any scaring on the next sig.... (again NOT FUN!) and then he moved out of state. The BEST doctor I ever had was a rheumatologist I started seeing for my Raynaud's & other aches and pains, and she was just fantastic. I never even bothered with my primary because she was so up on everything she treated me for everything, so of course, she then left town, too! A few years back, my primary sent me another GI specialist who ended up stumped because they couldn't find anything on the barium enema (which I swear they'll have to kill me to get me to have another one of those because the symptoms after were sooooooooooooo bad!) and nothing showed up on the upper GI.... that barium tasted yucky but the effects were not so bad! He said he was perplexed because I had symptoms such as a low B12 and anemia which people with IBS don't get. I just couldn't tolerate anymore tests so I stopped seeing him and should go in for a colonoscopy one of these days. I like the idea of being "put out" LOL. The one thing I couldn't believe is seeing that picture of the crusty spots at the corner of the mouth. I get those all the time, also sometimes more often than not and my primary thought it was eczema, but what the cream he gave me didn't really help. I always get those after dental work too, but no one ever connected it with the Crohn's!

Anyway, it's good to know I'm not alone. The one thing I do remember is years back telling the GI doc I was doing so much better because I had been sort of constipated and he said that wasn't good because that can be a symptom of it too. Now I'm on one of those "go like crazy for a few days" and then don't go at all for a few days or more, which I like when I'm not getting to the point of needing to go again! The one thing I'm grateful for is even if I do have to go a lot and my bottom is getting sore is if I don't have cramps.... cramps that are like going through labor and last for hours and hours.

I so understand worrying about eating when you're out and can't get home right away and it's really sort of comforting to know I'm not alone, even though I'd never wish this on anyone! I'm also bad with the milk! Even though I wasn't lactose intolerant years back, the doc did say I had to watch the dairy when I was having problems so I've gotten to the point where a quart of milk goes bad before we even get to it. Milk bothers my girls and either my son doesn't like it, or he doesn't say if it bothers him too. He does eat icecream like mad tho! :-)

Thanks for the info and the comfort of knowing there's others here who can relate. Herck - that was great info you found. I've gotten tired of looking for it through the years. Oh yeah.....guess where my pain is most of the time when I have it - the LEFT side...not the right! Oh and lucky me.....when I had the barium they told me I had "redundant bowel" which means it's about 2x as long as normal so that explains the "labor pains!"

Funny, I've been living with this for so long, I just try to play it down, but there's so many things I just don't do because of it and it's quirky nature of never knowing WHEN it's going to flare up or WHERE!

Zachsmom
Moderator

07-13-2000

Thursday, July 07, 2005 - 3:53 pm   Edit Post Move Post Delete Post View Post Send Zachsmom a private message Print Post    
I totally relate to what you just wrote Watching...lol Especially the pain on the LEFT side. I have been having tests done and I keep telling them "IT'S RIGHT HERE!" --the pain. But, that is 'not consistent' with Crohns.... I may have to print this thread and say, "SEE!"

Also, about the part of living with this so long, that you play it down and not do things. <Sigh>

Funny note, CCFA (Crohns Colitis Foundation of America) when you join, sends you a 'let me poop' card. It's a discrete card that explains your situation, so if you come upon a long line in the public bathrooms, you just show it to the person in the head of line...lol...I never had the guts to use it!


Herckleperckle
Member

11-20-2003

Friday, July 08, 2005 - 2:10 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Welcome to the club, Watching. (A club no one wants to join, but here we are!)

Years ago, after my hernia operation that went bad, I had to drink that darned barium. It revealed adhesions that I swear (knowing what I do now) helped lead to this Crohn's problem. And I had the SAME reaction as you. It was horrible because my insides just couldn't handle it at all. So I completely empathize.

I only have pain on my right. So I guess I fit the profile in that respect.

Zmom, that is a riot! I have saved their site as a bookmark, but never actually joined. Heck, I would use it! You know it! Can you imagine the look you'd get, though! LOL!

Hypermom
Member

08-13-2001

Friday, July 08, 2005 - 5:20 pm   Edit Post Move Post Delete Post View Post Send Hypermom a private message Print Post    
Watching and ZM,

When you get the pain on your left side, does it go around to your back?

Z, I'm laughing about the half hour rule. My dh has had crohns for 21 years and has the same rule.

Metoo
Member

02-22-2005

Monday, July 11, 2005 - 7:09 am   Edit Post Move Post Delete Post View Post Send Metoo a private message Print Post    
The half hour rule is mine too and my pain is also on the left side but mine doesn't go around to the back.

Konamouse
Member

07-16-2001

Monday, July 11, 2005 - 6:14 pm   Edit Post Move Post Delete Post View Post Send Konamouse a private message Print Post    
Have any of your folks looked at the Specific Carbohydrate Diet for IBD? http://www.scdiet.org/

I'm going to be working on a research project and have to put together food lists for this and a control "low fat" diet.

'squeek'