Patient Comments: Crohn's Disease - Treatment

Question:

Describe the various kinds of treatment you've had for Crohn's disease. Submit Your Comment

Comment from: WyoJane, 45-54 Female (Patient) Published: February 23

I have severe fistulating Crohn's disease since the age of 9. At 43 my body is so broken. I have done it all, medications, tests, and pure natural. I am still recovering from my 14th surgery with daily homecare nurse visits due to poor wound healing, though been flaring for 2 years. I also have celiac, asthma, arthritis, pyoderma gangrenosum, and centralized pain syndrome with C fiber to name a few. I have had consistent diarrhea since May. This weekend started more black tar in the toilet so bleeding again in the small bowel. I lost 65 lb. in the last 6 months, now at 190s. We are waiting for new biologic pathways to try. I no longer qualify for trials due to permanent colostomy. I am hoping methotrexate shots, steroid shots, and Entocort hold me until something new. Surgeon will not do anymore surgeries unless I am on death's door. Last one nearly killed me. I have about 20 inches of large bowel left. Just remember that there is a wide spectrum of manifestations of Crohn's. Those with severe cases are constantly fighting for their lives. It is a fulltime job.

Comment from: rose, 55-64 Female (Patient) Published: June 17

I was diagnosed with Crohn's disease (CD) at age 59, by colonoscopy. I had developed urgent bowel movement, soft stools, which I thought was a side effect of the omeprazole I had just gone on for reflux (Barrett's syndrome diagnosed). The gastroenterologist just went for the direct approach. Blood tests at the time revealed auto-immune problems, so I was also seeing a rheumatologist (for sudden knee pains), dermatologist (for allergic skin problems), and ophthalmologist for dry eyes. I had no pain, am overweight, and no known eating allergies. I had a 6 month dose of steroids, put on even more weight, but within a month I was back to normal in the bowel movement department. Now no symptoms of Crohn's apart from occasional signs of fresh blood on the tissue paper. But I do suffer from an occasional serious bout of burning skin rash on face and neck, and/or a dose of itchy skin and hives rotating around the body for a few weeks. I had this for a couple of years before diagnosis of CD. Mystery. But I am grateful that this seems to be my only problem (not sure if connected) from my CD. I don't feel like a Crohn's sufferer, I can't relate to most of the above although I do sympathize; also I worry for my future.

Comment from: ulunda, 65-74 Female (Patient) Published: March 24

I was diagnosed with Crohn's disease at age 68 after suffering stomach pain and having a colonoscopy. I was put on Imuran which helped for a while until I was admitted to hospital with pancreatitis. After this painful episode I tried another tablet which I can't remember but it had bad side effects too. In between medications I was on steroids which were great but I was not allowed to stay on them for more than a month or two. I eventually had 2 trips to hospital for bowel resection about 13 cm each time, they were exactly 1 year apart. I am now on methotrexate injections once a week for maintenance and the side effects of this injection are horrible. I inject every Monday morning then feel nauseous and want to sleep for the next 3 days. At the moment I am suffering severe pain in my stomach and feel I might have gallstones. I am seeing my doctor in 2 days so hopefully I can get some relief.

Comment from: Kate, 55-64 Female (Patient) Published: February 10

After 3 abdominal surgeries for Crohn's disease (that did little or nothing) and trying several other treatments, I have now been symptom free since 2001, after receiving acupuncture.

Comment from: Mother of patient, 19-24 Male (Caregiver) Published: March 19

My son was 19 when he was diagnosed with Crohn's disease. His brother was also diagnosed with it a year earlier. Both were eating an unhealthy vegan diet. Many vegan diets are healthful. Theirs was not. My older son stopped taking medications for Crohn's over ten years ago, eats a healthy diet and has had no symptoms. My second son, middle child, continued taking Imuran for about ten years although he wasn't having any Crohn's symptoms. His gastroenterologist kept giving him the prescription. My son developed a rare form of lymphoma caused by this drug and just died at the age of 35. He leaves a wife and three young children.

Comment from: Emma, 25-34 Male (Patient) Published: September 08

My condition of life has improved drastically since I started using PeaPlex for my Crohn's disease.

Comment from: 55-64 Male (Patient) Published: October 10

Originally it was hard to find a doctor who even knew what Crohn's disease was. I was given a battery of tests then prescribed Azulfidine and prednisone to bring it under control. It took 6 months to bring under control. It was under control for a year then stress caused a flare up. Unlike the officials claiming stress doesn't cause flare ups I have lived with these flare ups for 30 years. They affect my left eye turning it red, causing extreme sensitivity to light, where I have to wear eye patches for up to two weeks.

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