Ugh....just when I started to think I was improving.

[constantd]

OK... more questions, as usual. I know that budesonide is sort of the gold standard treatment (and in fact I am currently taking 3 mg and tapering), but I have some beef with it. First off, budesonide works on the terminal ileum and colon. This is great for people who have classic MC, but what about those of us who have lymphocytic infiltrates throughout our entire GI tract?? My duodenum showed up positive 5 years ago for lymphocytes. I bet that this is why I have always had problems with malabsorption and my weight. Even when I conceived my daughter I was barely 110 pounds! It was a miracle that I was even able to conceive her! So I guess what I'm saying is that maybe budesonide isn't really my best option? And I'm guessing the only other option are scary drugs like prednisone, immuran, TNF inhibitors, etc.

Secondly, has anyone ever had lymphocytes show up in their gastric biopsies? I'm just wondering because I go in again for another double scope from both ends in 2 weeks and I BETCHA I've got lymphocytes in my gastric lining. This would explain my gastritis symptoms and epigastric pain. Ugh...somebody needs to invent a drug like budesonide but that works on the entire GI tract.

Third - when people have lymphocytes in their small bowel do they also have villi blunting? I don't think my Doc mentioned this about my last biopsy, but only that I had lymphocytes.

Fourth - has anyone had to be hospitalized with a feeding tube? I'm worried that this is the direction I am heading. This is all so damn depressing. I swear this disease gets NO RESPECT!! I mean, ulcerative colitis sucks and all but it only affects the terminal ileum and colon.... whereas my whole gi tract is affected! Why aren't there more people researching this huh??

I'm just getting really down because of my low weight and inability to retain nutrients, etc. I KNOW that this has to be from the inflammation in my small intestine. I've been considered "underweight" for the last oh....15 years. It all started when I got back from Africa after having entamoeba histolytica. Damn parasite! Then I developed acid reflux and was put on PPI's and it all went downhill from there.

Sigh... sorry to be so down. I just can't take this anymore.

[Adelaide]

Now you have got me wondering what part of the my GI tract is affected. The doctor didn't give me any written results from the biopsies, he only told me the result of microscopic colitis (lymphocytic colitis) on the phone and didn't give me any further details. The only thing I have is the report I got straight after the colonoscopy which said 'Decreased vascular pattern in the entire examined colon' and 'Await pathology results to exclude microscopic colitis.' So I wonder if that means my whole GI tract is affected and this is why budesonide is only partially effective.

[tex]

Katie and Linda,

Many/most of us have some degree of lymphocytic infiltration into the mucosal lining of our digestive tract from one end to the other. In most cases however, the clinician fails to attribute any significance to that, so she or he doesn't even mention it and the patient is often unaware of it. I have no colon, and yet I have the same symptoms as most others here if I slip up on my diet. Obviously the disease is incorrectly described in the literature.

Regardless of the pattern of inflammation, budesonide is virtually always the optimum med for MC. Note that Uceris is not activated until it reaches the end of the transverse colon or the sigmoid colon (because it's targeted at UC), and yet users report that it typically gives good results for MC (with minimal side effects). If you want to treat the entire GI tract (with an anti-inflammatory med), then theoretically at least, prednisone is the optimum choice for that, but I would be surprised if your results would be any better than taking a full dose of budesonide.

Quite a few of us have been found to have lymphocytic gastritis (or some variation of that nomenchature). It's simply MC in the stomach, but physicians can't call it that, because by definition (colitis) MC can only exist in the colon. In most cases, gastroenterologists haven't even bothered to take note of the condition when it's present elsewhere in the GI tract, once they find the diagnostic markers of MC in the colon.

Third - when people have lymphocytes in their small bowel do they also have villi blunting? I don't think my Doc mentioned this about my last biopsy, but only that I had lymphocytes.

You apparently missed this in my next-to-last post:

Koskela (2011) even noted that in general, the duodenum of patients with MC, excluding any patients who have celiac disease, have shorter villi than controls.19

But again, clinicians will almost never mention this to a patient, because they don't know what it means (since by definition, MC cannot exist in the small intestine, and these patients do not qualify for a celiac diagnosis). To their doctors, it appears to be a symptom without a disease, so it cannot exist.

Fourth - has anyone had to be hospitalized with a feeding tube? I'm worried that this is the direction I am heading.

Yes, but it's very rare. Sometimes it resolves the symptoms, sometimes it does not. The problem is that those formulations contain many ingredients and they are manufactured by pharmaceutical companies.

I swear this disease gets NO RESPECT!! I mean, ulcerative colitis sucks and all but it only affects the terminal ileum and colon.... whereas my whole gi tract is affected! Why aren't there more people researching this huh??

You're right of course, but researchers have to eat, so their research depends on funding. The lion's share of research funding comes from the pharmaceutical companies. You will note that there is not a single drug on the market labeled for MC. And that will continue as long as the pharmaceutical companies view the disease as devoid of any big profit opportunities.

Because the drug companies are not likely to ever fund MC research, we founded the Microscopic Colitis Foundation a year ago with the mission of promoting public awareness and the hope of someday being able to sponsor research directed at finding better treatment programs for MC. But so far, finding people outside of the membership of this forum who are willing to contribute to the cause is like searching for the Holy Grail. Apparently people who have money to spare either don't get MC or they trust their doctors implicitly (or maybe they're throwing all their money at politicians these days), but whatever the case, trying to get some funds together to sponsor research to benefit patients who have the disease is an exercise in futility.

And I agree that it's mighty frustrating how so many people can throw millions of dollars at Crohn's and UC research, and throw kazillions of dollars at political campaigns (which is money down a rathole for sure), but MC gets no respect (and consequently no funding).

Tex

[Adelaide]

Thanks for that Tex. It definitely sounds like I am on the correct treatment. When I saw my doctor a week or so ago he said he was considering changing me to prednisolone but then after he looked into it he said that Budesonide was best because it is first line treatment for MC. I am pretty happy with that because I think that Budesonide has a bit of an effect on my blood sugar but I imagine Prednisolone would affect it a whole lot more.

Katie, I hope everything goes well with your double scope and that they find some answers. I also hope that you will eventually have great improvement in your symptoms

[tex]

I am pretty happy with that because I think that Budesonide has a bit of an effect on my blood sugar but I imagine Prednisolone would affect it a whole lot more.

Yes it would. Only up to roughly 20 % of budesonide is absorbed into the bloodstream (in the terminal ileum), so that means that at least 80 % of it stays in the intestine where it is needed. I'm not sure what the absorption rate is on prednisolone, but I'm sure it's way up there, because it's considered to be a systemic drug.

Tex