who can help me??

[Laurie1984]

hey there, I'm 23years old, and from Belgium. I've been diagnosed with Crohn's desease since 8years. Since then i have tried almost every med:salazopyrine, pentasa, corticosteroids, remicade, humira, Metotraxate...the whole gamma of meds and anti-TNF-alpha,
Now, i have started using Cimzia (certolizumab pegol) in compasionate use, but as it's disapproved in Europe we might not get it anymore. Does anyone knows another treatment? Or highly recomended doctors in the world, who might help me with aonther view or treatment?

[misskittyluvs]

I have Crohns Disease and my treatment is Remicade Infusions which take about 2.5 hours and I get this every other month.  It has put my Crohns in remission, which means at this point, it won't spread, but I still have the symptoms of Crohns, diarreaha, bloating, cramping, etc.  Ask your doctor about Remicade.  I love it.

Valerie

[artlamps]

I've had chrohns for 40 years.Great relief from Primal Defense(primaldefense.net).
Check out livingnutrition.com .Juicing and natural foods help tremendously.

[lizziecee]

Hi Laurie - I too have had Crohn's a long time - 37 yrs in fact, dx at age 26.   I was on steroids for some 30 yrs but they have adversely affected my bones and for the last 7 years have been on methotrexate - firstly orally 25 mg a week, but still got bad diarrhea, so am now on a weekly self injected dose of 12.5 mg. This way my gastro knows the drug goes straight into my bloodstream and does not have to be "diluted" in the small intestine or stomach. I am doing fine.

I belong to the UK's National Assoc for Colitis and Crohn's, and in a recent newsletter they advised that NACC has been invited to contribute to the National Institute for Health and Clinical Excellence (NICE)'s review on anti-TNF biologic therapies for Crohn's. The 4 drugs they are reviewing are:
Adalimumab (Humira)
Certolizumab pegol (cimzia)
Natalizumab (Tysabril)
Infliximab (Remicade).

As you have already had 3 of these drugs, perhaps you could ascertain if Natalizumab is available in Belgium?  I can't think of any others.

As for GI doctors - I have a brilliant one :
Dr. C. M. Hayward
Consultant Gastroenterologist
Derriford Hospital, Derriford Road
Plymouth PL6 8DH
England
Tel: [phone]
Fax: [phone]

I did have a recent consultation with him wherein we talked about anti-TNF drugs and he said he has been one of the specialists trialling these.  I am comfortable and in remission on methotrexate, so there was no reason for me to trial these.

He is a young, 40ish gastro with a Ph.D as well as a medical degree and is passionate about inflammatory bowel disease problems. He used to work in Africa in a leper colony, then with Aids/HIV patients in London, before deciding gastroenterology was an exciting field to be in. He is very compassionate, incredibly intelligent, and perhaps the best gastro I have had in years. He has a private practice at the Nuffield Hospital in Plymouth where he would see you. I am not sure if you are entitled to our National Health Service, although Belgium is in the EEC. As far as British people are concerned we can only get free medical treatment in the EEC on an emergency basis. I first saw him privately at the Nuffield 5 yrs ago, and I believe it cost me £125 for the consultation. I was very ill with a flare and he immediately transferred me to the National Health Service. 2 days later, I was dx with breast cancer and he has been supportive in my treatment for that disease.

As far as diet is concerned, I have seen many hospital dieticians and they have all told me, without exception, that I should eat a normal high protein, low fibre, low fat diet. I still eat fresh vegetables, but cut out all the stalks, even those in spinach, and this helps a lot.

In addition to the methotrexate, I also take daily, folic acid (which you must have with mtx), codeine phosphate and Triptofan. The latter drug does two things - reduces the motility in the gut and eases the spasms.  At last I have found a "cocktail" that works for me and I am grateful for Dr. Hayward's advice and help.

I hope this information is useful to you. If I can help further please get back to me.

Good luck
Liz in Cornwall, England.

[faithchris]

I would think and have heard that an all natural diet helps.  I personally do not have it but have a son with it a severe case.  If he does not eat properly he gets so ill he has to be home for months and sometimes in the hospital.  The more natural you go the better you will feel.  Eat only foods organicly grown and try to follow the Bible diet which is just what I said all natural foods it really helps a  lot.  God Bless You All who suffer with this terrible condition.