Hi Shewhowalks,
You're right, of course, there is no cure for MC, just as there is no cure for any of the other IBDs. Lyn's explanation of proper biopsy sampling protocol is right on target. Your GI doctor seems to be quite confused, unfortunately. He's in the wrong business - he should be in the entertainment business, because he obviously would make a pretty good clown.
The hematuria concerns me. If you've had more than two positive test results for red cells in your urine, the cause needs to be determined. A possible cause could be a kidney stone, a kidney infection, or an upper UTI infection, and that could obviously be the source of at least part of your chronic pain, since you describe it as "going into your back". Gallbladder disease can also cause similar symptoms, though the pain would be in a slightly different location, with gallbladder disease. Anyway, the hematuria definitely should be checked out by a urologist. Before doing that, though, I would try discontinuing the Asacol, because it can cause hematuria, and if it is in fact causing your hematuria, then you should not be taking it, obviously. I'll go into more detail, as to why you should not be taking Asacol, a little farther down in this response.
If you are intolerant of casein, removing "most" dairy is not sufficient. For those who are intolerant of casein, even trace amounts can cause the same type of intestinal inflammation as gluten, and it can take a while for the damage to heal, after
all casein is withdrawn from the diet. I would suggest removing all dairy, and all soy from the diet for a couple of weeks, (in addition to continuing to avoid gluten, of course), to see if that makes a difference, since about half of us are intolerant of soy.
The bruising and anemia suggests that you are deficient of the B vitamins, especially B-12. You need to be taking supplemental B-12, B-9, and B-6, at the very least. The B-12 should be in sublingual form, to get around the malabsorption problem, and the formulations available which include a correct percentage of foliac acid, as part of the sublingual lozenge, are probably ideal for this purpose. I'm surprised that your doctor hasn't suggested that to you.
There is a possibility that the Asacol is causing your pain, and other symptoms, and if I were in your shoes, I believe that I would stop taking it, and I would locate a GI doc who would prescribe Entocort, (at 9 mg per day). If you are reacting adversely to Asacol, then you will not be able to achieve complete remission, even with a full dose of Entocort. Your pain could be coming from chronic panceatitis, for example. In fact, pancreatitis could cause all of the symptoms that you are experiencing. Again, I'm surprised that your GI doc hasn't checked out that possibility, because pancreatitis is a serious issue. Most GI docs are not aware of this, but Asacol carries a significant risk of causing chronic pancreatitis, and a lot of case studies have come to light, where that was the case. Stopping the Asacol will usually allow the pancreatitis to resolve, but not all patients are so lucky. Asacol can also cause hematuria, though, like pancreatitis, only a small percentage of patients have that experience, so most GI docs tend to just ignore the risk. You might even be reacting to the lactose in Asacol - quite a few of the members here cannot take Asacol, because of adverse reactions. That's why, IMO, Asacol and Entocort should never be prescribed together, because if one causes an adverse reaction, the other will partially mask the effects, but remission will be impossible to achieve.
Entocort can cause easy bruising, of course, but usually that's a problem only encountered with long-term use, at higher rates. The reason why I suggest the B vitamins, is because many of us, myself included, have bruising problems while reacting due to MC, and I have never taken Entocort. A week or two after beginning to use a good multivitamin, along with sublingual B-12, my bruising problem disappeared.
Please give some serious thought to discontinuing the use of Asacol - I'm not a doctor, but IMO, there's a very good chance that it could be the source of most of your current symptoms.
Tex
