Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Hello all, my name is e, My son Micheal (age 3) has PSC and Chrons. I would like some advice from anyone who has ANY other solutions than what we have already tried. He is currently on Azathioprine for his Chrons and we have done 4 rounds of steriods, they have not worked. Every time he weens off he starts bleeding again. We have tried flagil and it has the same affect. I am doing some research on ALOE that you take by mouth (a drink). Has anyone tried that and had success? We have tried other natural remedies and have had NO luck. Either we can't get him to take the stuff cause it tastes gross or he's gotten worse. The doctors just want to keep increasing the doses... Azathioprine is pretty strong so I'm not really comfortable with all of it's side effects. ANY advice would help. I would like to get him in remission for a while. He was diagnosed 2 years ago and has yet to be in remission. Thank You all in advance. e Mother of 4 (Mikey PSC age 3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Hi e; I'm so sorry to hear about 's struggles with Crohn's and PSC. Have you thought about trying the biological therapy ... infliximab (Remicade) ... which has often been effective in patients who do not respond to azathioprine/steroids/antibiotics: http://www.ccfa.org/info/treatment/kidsmeds Biologic Therapies " New biologic therapies are emerging to treat Crohn's disease. Infliximab (Remicade®, an anti-tumor necrosis factor antibody) has been studied in a limited number of pediatric patients. The majority of children and adolescents with refractory Crohn's disease appear to respond to infliximab therapy, whether the drug is used to treat inflammatory or fistulizing disease. The limiting factors appear similar to the adult experience: lack of a maintained response, potential allergic reaction, and the fact that long-term side effects (if any) from this drug have not yet been established. " Best regards, Dave (father of (22); PSC 07/03; UC 08/03) > The doctors just want to keep increasing the doses... Azathioprine is pretty strong so I'm not really comfortable with all of it's side effects. ANY advice would help. I would like to get him in remission for a while. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 e, I've been taking a probiotic supplement (at the advice of my doctor) for my colitis, and it has really helped a lot. The probiotic I'm taking is VSL#3 (can be ordered online at vsl#3.com) which has been shown in a number of studies to be effective for colitis. There are fewer studies on it's effectiveness in Crohn's disease, but it may be worth a try. It does have a bit of a nasty taste to it, but if you mix it with applesauce or yogurt it's hardly noticeable (for that matter you could probably mix it with ice cream!). The VSL#3 took me from the worst UC flare I've ever had to almost normal in less than two weeks, so I'm becoming quite a believer in it! Hope you can find something that will help! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 > > e, > > I've been taking a probiotic supplement (at the advice of my doctor) for > my colitis, and it has really helped a lot. The probiotic I'm taking > is VSL#3 (can be ordered online at vsl#3.com) which has been shown in a > number of studies to be effective for colitis. There are fewer studies > on it's effectiveness in Crohn's disease, but it may be worth a try. It > does have a bit of a nasty taste to it, but if you mix it with > applesauce or yogurt it's hardly noticeable (for that matter you could > probably mix it with ice cream!). > > The VSL#3 took me from the worst UC flare I've ever had to almost normal > in less than two weeks, so I'm becoming quite a believer in it! > > Hope you can find something that will help! > > athan > , do you take anything else for your colitis? thanks rachel(uc'91) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 rachel wrote: > do you take anything else for your colitis? > I'm also on Pentasa, and that had generally kept things under control before this. I've got a theory that the CMV infection I had a few months ago is what triggered the Colitis flare I've had recently. If that's true the VSL#3 may have helped by providing good bacteria to outcompete the CMV in my gut. athan Quote Link to comment Share on other sites More sharing options...
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