Remicade not working for son
Fri, June 24, 2011 2:39 PM
My son has been diagnosed with Crohns at age 19 and is now 29 years old. He is very dispondant at this point cause the drugs are not healing his body. He is currently on remicade but it is no longer working. He is so at the end of his rope. He wants to leave the country because he feels no one cares here in the U.S. Does anyone know how to find out about the stem cell studies? He has an acute case of Crohns. He has been bleeding for 6 months non stop and can't gain weight or strength. Please suggest anything you know about.
Joined Jun 24, 2011
Wed, June 29, 2011 7:20 AM
Reply posted for Inga.
Try the Specific Carbohydrate Diet (SCD), sounds like you have nothing to lose. My son was diagnosed 3 years ago, they told him he would be on drugs the rest of his life. We put him on the diet a year ago and he is doing much better. He is on no drugs at this time. The doctors do not agree with the diet however, so that may be a problem for you.
Joined Nov 15, 2010
Sat, June 25, 2011 6:57 PM
Reply posted for Pipsquacky.
On the other hand, the disagreement that I'm currently in the middle of
with our GI doc is the occasional use of narcotic/opioids to give
temporary relief from the pain. I'll have to let you know how that one
turns out. I can say, that through various Facebook groups that I've
kept an eye on, I've met a few people in other countries (South Africa,
Australia) where they consider narcotics an option and it (by the
individual people's report) seems to work out ok and keep them going.
I'd have to know what drugs/treatments your son has tried besides
Remicade before I might be able to list any other options that are
available in the country, or even up and coming. If you want to post
that, I'll tell you what I know.
Best wishes to you and your son.
~ Andrea
pipsquackyJoined Sep 7, 2010
Sat, June 25, 2011 6:56 PM
Reply posted for Inga.
My twelve year old daughter has been in a Crohn's flare for 16 months now. I can completely relate with you about your son being despondent and at the end of his rope. I would describe my daughter as depressed because of the constant pain and failure after failure with the various treatments. I have recently come to have the very strong opinion that controlling the pain is a critical part of managing this disease while working towards finding what works to get the person into remission. The reason that I bring this up to you in your situation with your son is that I believe that when a person gets at least occasional breaks from the pain, they are able to more easily keep a positive attitude, feel hopeful that eventually a treatment that works will be used, and actually cope better with the pain when they have it. When a person has pain day in and day out with no relief in sight, of course they become hopeless.
Right now I'm a bit at odds about how the pain should be managed with my daughter. We have tried a lot of things that the doctor has supported. Basically, I found a fantastic book called, "Conquering your Child's Chronic Pain," by Dr. Lonnie Zeltzer and read the whole thing. I know that your son is an adult but the general principle is the same so maybe you could find a book for him that would help. There are medications and coping techniques that this book describes that can "turn down the volume" of the pain. We've had some success with it. My daughter is also in counseling and we are about to start her on an antidepressant, Zoloft. I've been told that in addition to the antidepressant properties of this medication, that it also can play a role in "turning down the volume" of gut pain.
(This was too long, I'll finish my answer in another post.)
pipsquackyJoined Sep 7, 2010
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