It has been one year this November I had a bleeding AVM in my small intestines. There is new technology now, the doctor is having me swallow a Pill camera next week to check for more AVM’s. The camera takes a picture every three seconds until the battery dies. The pictures are recorded on a memory device you war like a belt around your waist.
hi jim, dont you just love living in our time… GO TECHNOLOGY RA RA RA !!! this is exciting news
my thoughts will be with you.
Hello. I have a similar condition with AVMs inside the small intestine. I believe I had this for most of my life and with age, it just got worse. Be aware that this constant bleeding will cause you to have anemia. In the beginning I was getting whole blood transfusions about avery 3-4 months of 2-3 units each time. Now my blood have developed antibodies which will compromise my chanches for future emergency transfusions and organ transplants. Currently on iron IV therapy once a month and it seems to help with the anemia but it doesn’t help with the cause, the damn bleeding AVMs. I have done some research and learned about some doctors in Germany having success with prescriping thalmiodine(?) (that drug which caused the birth of babies without limbs when mothers took it to help with morning sickness back in the 50s and 60s). Any way this drug is currently used to treat lebrosy and certain stomach cancers successfully. And recently I learned about a Dr. Kumar out of NY Veterans Hospital who was doing trials similar as the German doctors. I am trying to presuade my own GI doctor to do similar trials with me and some others as the guinea pigs. I just want to cured. Check it out at clinicaltrials.com The pill costs like $5000 for 30 days but the results show that after about 3 weeks there were positive results. Currently the FDA won’t approve for treating intestinal AVM but if enough successful trials are done, maybe the FDA will change its mind and then the medical insurers can pay for the treatments. Some reports have shown it actually cured it and not just treated the symptoms. There is hope.
They tool out my AVM completely about 1 foot of small intestines. I don’t bleed at all now, it all happened once and that was the end of it. The only problem I have now is digesting food completely. Good for loosing weight but get’s old, like direrea at least once a day usually mid morning after breakfast. If I eat a large meal it pushes out my last meal.
I did the pillcam last week looking for more AVM’s. Will know the results 9/30