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Date of last update: 10/15/2017.

Forum Name: Gastroenterology Topics

Question: Daughter newly diagnosed with much to learn!

 silkzipp - Wed Jun 09, 2010 11:15 pm

My daughter was recently diagnosed with a mild case of Crohns and was put on Pentasa. She used it for only a week but because the doctor saw no signs of improvment, she switched her to Entocort. Three capsules once a day for 4 weeks, then 2 for 4 weeks, then 1 for 4 weeks. The pharmacist told us that us that it is okay to take it in the evening, as long as it is at the same time everyday. The information that came with the prescription states that it is to be taken in the morning and the drug manufacturers website states that same thing. Her doctor is away until the end of June so I am unable to discuss this with her. I want to make sure that my daughter is getting the greatest advance of the medication so it is important that I find out the correct way to take entocort. If there is a right way and wrong way, could you explain why and and more about how this medication works? Also, in conjuction with the medication, are there any foods that would be benifical or help get the Crohns into remission and any that should be avoided?

We have so much to learn about how to help her.....thought I'd start here.

Thanks for any help.
 silkzipp - Wed Jun 30, 2010 12:00 pm

It has now been three weeks since starting the entocort. While her doctor is away, whe was referred to a colleague for a check up. He has told us that he has no issue with taking the Entocort in the evenings, as long as she took it at the same time each day. Tests showed that the Crohns was about 10cm long in the small bowel . There has been little change in the condition of bowel movements, they are still mostly liquid, although there are for lack of a better term, sometimes a bit muddy now. She still has pain, but not in the bowel area where I would expect it to be, but in the abdominal area just above the belly button area. The doctor didn't seem to be overly concerned, saying that she may indeed feel the pain there.
Her own Gastro doctor is still away, and apparently won't be back until the middle of July and we have some many questions. Even when she does return, there is no telling how long it will take to be seen. It took us 6 months to get an appointment on an unrelated incident when her GP sent her because of elevated liver enzymes. Subsequent test showed normal liver enzymes as well as being negative for Wilson's Disease and Celiac Disease. The second referral took 3 months before she was seen. How long, before she can expect to see major improvement? Although she doesn't seem to be in a great deal of pain, this has been ongoing since January of 2010 but was only diagnosed in May of this year. That seems like such a long time to be experiencing these problems without resolution. She has lost about 15 to 20 pounds. What else can we do to assist with her improvement, we know to eliminate hard to digest foods, like nuts and seeds, but are there any food that will actually help.

Sorry for rambling.

Thanks for any assistance or advice.
 Faye Lang, RN, MSW - Fri Jul 09, 2010 3:42 pm

Hello silkzipp,

What a difficult time for you and your daughter. Crohn's disease is an inflammatory condition currently considered an autoimmune disease, which may have a genetic link. The goal of treatment is to manage the symptoms; there currently is no cure. Various medications may be needed over time, to address flares of symptoms or problems that arise. Such medications can include anti-inflammatory medications, antibiotics, corticosteroids and/or drugs known as immunomodulators. There often is considerable "trial and error" involved in finding the best treatment for a specific individual. In a personal newsletter that I receive, I noted that one study found that a natural medicine called "boswellia serrata extract H-15" showed great promise in treating Crohn's Disease. I cannot recommend it, of course, but you can discuss it with your doctor. I always advise the person to maintain a record of their symptoms, including date, duration of the symptom, what occurred just prior to the symptom, and any other data that seems significant. In this case, a food diary would also be helpful to you. There is no universally recommended type of diet for the management of Crohn's Disease, because people with the disease have different reactions to different foods. The food diary would help you identify and track problem foods. Some people find a diet low in fiber is helpful, or one with soluble fiber. Dairy foods may be problematic, and some people benefit from a low fat diet. Some foods are more likely to cause problems, such as cabbage. It's always a good idea to consult a dietician.

I didn't find your daughter's age mentioned, so will point out that if she is at risk of childhood diseases such as measles or chickenpox, if there is an exposure or if she contracts such disease, notify your doctor at once. Corticosteroids will usually be discontinued, to allow the immune system to function more effectively against the disease. When it is difficult to obtain timely appointments with a doctor, you can try making the appointments well ahead of time, and discuss it with the doctor, who might direct their staff to set up a schedule of appointments for you. If you are within reasonable distance of a university medical center, more frequent appointments are generally available and most medical disciplines are available. It may also be helpful to consult a doctor who specializes in autoimmune diseases, which includes rheumatologists and immunologists.

It's a good idea to do an online search of "Crohn's Disease". There are many, many choices listed with most diseases, but reading the synopses by organizations that conduct research, such as the Mayo Clinic, can give a very good overview with tips on managing the disease. You may also find a local or online support group of persons with Crohn's Disease, which can be invaluable in staying up to date on treatments as well as giving support to your daughter and your family. I hope this information is helpful to you, and I wish you all the very best of luck.

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