Newly DX - much needed advice
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I'm still a little overwhelmed with the dx but refuse to rest on my laurels. I'm looking for a good acupunturist in Austin to add to the treatment plan which shouldn't be too hard to find. I do have a question. Besides the obvious meaning, what do ya'll mean when you talk about "giving the gut time to heal"? I noticed it's a common thread in many posts from many of you who have been managing their MC for a while. Also, any suggestions on how to facilitate healing, beyond going GF & DF which I'm considering, would be greatly appreciated. Thanks.
Well, basically, after all of the offending foods have been removed from the diet, (so that all the autoimmune reactions stop), it still takes the intestines a significant amount of time to heal. Most GI specialists seem to assume that the intestines can heal in a matter of weeks, but research shows that with celiac disease, for example, only young people, (as in teenagers and younger), heal within a year or two. Most research shows that it takes from 3 to 5 years for roughly 85% of adults to completely heal, (IOW, to return to normal histology), from the damage that gluten causes to the intestines. Some of us never completely heal. Fortunately, we can achieve remission from symptoms long before complete healing takes place.
Of course, similar research has never been done for MC, but the intestinal damage to the colon is typically the same type of damage suffered by the small intestine, due to gluten-sensitivity, so it's very likely that healing times will be similar. The only difference is that there are no villi in the colon, but the lymphocytic infiltration that causes the damage to the villi, is pretty much identical, in both cases.
About half of us are also sensitive to soy, so we have to avoid it, as well , and some have other sensitivities. Avoiding fiber will allow the gut to heal faster, also, because fiber is very damaging to intestines that are already hypersensitive because of the inflammation caused by an autoimmune reaction.
Tex
Of course, similar research has never been done for MC, but the intestinal damage to the colon is typically the same type of damage suffered by the small intestine, due to gluten-sensitivity, so it's very likely that healing times will be similar. The only difference is that there are no villi in the colon, but the lymphocytic infiltration that causes the damage to the villi, is pretty much identical, in both cases.
About half of us are also sensitive to soy, so we have to avoid it, as well , and some have other sensitivities. Avoiding fiber will allow the gut to heal faster, also, because fiber is very damaging to intestines that are already hypersensitive because of the inflammation caused by an autoimmune reaction.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
So Far So Good on Entocort
Well, I've been on Entocort for five days now and have seen about 80% success in the relief of symptoms. My gut has calmed way down and my pants fit again as the inflammation is subsiding. I'm only having three or four episodes of D first thing in the morning, then I'm free for the rest of the day and night. What a welcome relief from the 10 to 15 or so unpredictable daily episodes I was living with! Still no change in consistency (and that may be due to bile salts and the removal of my gallbladder), but I'm expecting a visit from Norman very soon. The only side effects from the Entocort are a slight cough and a very mild headache in the morning. I've decided to wean myself off caffeine and have reduced my fiber intake. Once I'm off caffeine I'll start testing dietary changes and see what happens. I made my appointment with an acupuncturist for next week and my mantra has become "I'm healthy, whole and my bowels are normal" My goal is full and complete remission. I've learned a lot from this site and appreciate all the time everyone has taken to share your wisdom and experience. It really helps those of us who are newly diagnosed and still getting our legs under us.
With a good response that soon, you should continue to see improvement, so you're on your way back to good health. Be sure to cut out gluten as soon as possible, because it takes a while for gluten damage to heal, and I'm afraid that 30 days of Entocort is not going to be long enough to allow sufficient healing time, so your symptoms will probably return when the Entocort treatment is ended. Most doctors allow twice that long, (as per the label), but in most cases, that's not long enough, either. If your doc won't extend the treatment, stick with the diet, because it will eventually bring remission, but it's so much easier on the patient, if they have Entocort to control the symptoms until the diet can take over.
Many GI docs make the mistake of discontinuing the Entocort too soon, and then after the symptoms return, they renew the prescription. The biggest problem with that is that every time one discontinues a corticosteroid, and the symptoms return, it takes longer to achieve relief when the drug is restarted again, or alternatively, it takes a larger dose, to achieve the same results. Eventually, one gets to a point where the med will no longer resolve the symptoms, if it's discontinued and restarted more than a few times. That's a well-known issue with corticosteroids, but a lot of gastroenterologists behave as if they're unaware of it, and the results can be very frustrating for the patient, to say the least, especially since it can be easily prevented, if the doctor understands how to effectively treat MC.
Good luck with your program. You seem to be motivated, and those who are motivated, get their life back.
Tex
Many GI docs make the mistake of discontinuing the Entocort too soon, and then after the symptoms return, they renew the prescription. The biggest problem with that is that every time one discontinues a corticosteroid, and the symptoms return, it takes longer to achieve relief when the drug is restarted again, or alternatively, it takes a larger dose, to achieve the same results. Eventually, one gets to a point where the med will no longer resolve the symptoms, if it's discontinued and restarted more than a few times. That's a well-known issue with corticosteroids, but a lot of gastroenterologists behave as if they're unaware of it, and the results can be very frustrating for the patient, to say the least, especially since it can be easily prevented, if the doctor understands how to effectively treat MC.
Good luck with your program. You seem to be motivated, and those who are motivated, get their life back.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
I got curious after reading your response and double checked my prescription on Entocort. I'm on 9mg for 60 days, 6 mg for the next 60 and 3mg for the following 30 days. That should be enough I think. Finally seeing some changes in consistency. Got all silt this morning and that's a good sign. That's how my remission started before the GB surgery; first silt, then soft-serve, then fully formed. So for all intents and purposes, I'm in the first stages of remission. Woo Hoo!
I got curious after reading your response and double checked my prescription on Entocort. I'm on 9mg for 60 days, 6 mg for the next 60 and 3mg for the following 30 days. That should be enough I think. Finally seeing some changes in consistency. Got all silt this morning and that's a good sign. That's how my remission started before the GB surgery; first silt, then soft-serve, then fully formed. So for all intents and purposes, I'm in the first stages of remission. Woo Hoo!
You bet. That should work. I just assumed from one of your earlier posts, where you said that you would be on Entocort for 30 days, and then you were to check with your GI doc, that you only had a 30 day prescription. 5 months is a reasonable amount of time, so you are well on your way to recovery.
Keep us posted on your progress, and if you should encounter any problems, please don't hesitate to ask any questions that might come to mind.
Good luck with your recovery.
Tex
Keep us posted on your progress, and if you should encounter any problems, please don't hesitate to ask any questions that might come to mind.
Good luck with your recovery.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.