I have tried many different medications and of course diet for MC. My diet is extremely limited: turkey, white rice, zucchini, olive oil, and sea salt. I have tried eliminating each one of those and replace with something else but still doesn't work. Last summer, June and early July, I was doing really pretty good. I was on Pentasa, Uceris, LDN, and Cortisol for my adrenal fatigue I thought it was the Cortisol that was helping, my GI dr thought it was the Uceris so he took me off Pentasa, and LDN. Well, I gradually got WD again. So I asked him to put me back on LDN and he did, I never could tell that Pentasa helped that much. It has been 2 months now but it is not helping. He wants me to take a once a month shot of Sandostatin Lar Depot. I want to reserve it for the last resort. I talked him into Entocort so I have been on it for a week. So far it is minimally helping. I have read Leah's posts about how being off hormones (and taking Tamoxifen) has helped her and I know Tex has mentioned before that HRT plays a part somehow. I am on bioidentical hormones: Estrogen, Progesterone, and Testosterone, and DHEA. I am thinking about doing a trial off of these meds to see if that would help. I dread getting off of them. I had MC for 10 years prior to getting on them. I have been on them for 5 years. I waited 5 years after reaching menopause before taking them. I had to fix something and since MC wasn't being fixed I had to fix the hot flashes, night sweats, insomnia, v-dryness. I dread the return.
Should I give the Entocort more time to work? I took Entocort probably 7 or 8 years ago and it only helped some but I was not on such a restrictive diet. When I do the trial should I do it cold turkey or gradually reduce them ( they are creams and I can control the dose)?
Thanks,
Pat
Need some advice.
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Hi Pat,
That's a heck of a note that the D is so persistent. Of course you know I'm not a doctor, so here's my 2 cents worth:
Considering your previous experience with Entocort, I would probably give it a bit more time before giving up or trying something else, if for no other reason, to see just what it is capable of at this point.
And since you can control the HRT dosage easily, if/when you decide to try altering your HRT, it might be beneficial to do a very slow taper. It's possible that you might discover a treatment level at which the D is controlled, and you still get some or most of the benefits of the HRT. Who knows? These are uncharted waters, so there could be all sorts of possible outcomes.
You're very welcome,
Tex
That's a heck of a note that the D is so persistent. Of course you know I'm not a doctor, so here's my 2 cents worth:
Considering your previous experience with Entocort, I would probably give it a bit more time before giving up or trying something else, if for no other reason, to see just what it is capable of at this point.
And since you can control the HRT dosage easily, if/when you decide to try altering your HRT, it might be beneficial to do a very slow taper. It's possible that you might discover a treatment level at which the D is controlled, and you still get some or most of the benefits of the HRT. Who knows? These are uncharted waters, so there could be all sorts of possible outcomes.
You're very welcome,
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.
HI Pat,
As far as the Entocort I agree that you should take it longer. I know there are people here that didn't get desired results on Entocort for several weeks.
I don't know enough about adrenal fatigue but I wonder if that is contributing to your diarrhea? Do you have any gall bladder issues? Certainly you are taking all the meds that should be reducing inflammation and I can't imagine the 5 things you eat are aggravating your colitis. I'm sorry that the diarrhea is so persistent. It's a puzzle and if I have any bright ideas I'll let you know.
Carol
I'm no expert in this area but I found HRT most helpful in that pre-menopause stage when everything is wacky and you get the sweating hot flashes, and lots of other ups and downs. I took HRT for 2 years then stopped on my own. After menopause I no longer have any of those earlier symptoms or I have them so mildly it's not uncomfortable. I'm thinking you are far enough along with menopause that it's worth a try to reduce the HRT.I waited 5 years after reaching menopause before taking them.
As far as the Entocort I agree that you should take it longer. I know there are people here that didn't get desired results on Entocort for several weeks.
I don't know enough about adrenal fatigue but I wonder if that is contributing to your diarrhea? Do you have any gall bladder issues? Certainly you are taking all the meds that should be reducing inflammation and I can't imagine the 5 things you eat are aggravating your colitis. I'm sorry that the diarrhea is so persistent. It's a puzzle and if I have any bright ideas I'll let you know.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Thanks, Carol and Tex,
My doctor is just as puzzled. He says I am one of a kind. He says he has had many MC patients and a large percentage take Entocort for 6 weeks and that's it. They are done. No more problems. Then another large % have to take a small dose continuously. And then there is me. He doesn't even have to look at my chart to know what the appointment is about. He is all on board with the diet but would like for me to expand it. I have tried to no avail. If anyone has ideas please chime in. Thanks!
Pat
My doctor is just as puzzled. He says I am one of a kind. He says he has had many MC patients and a large percentage take Entocort for 6 weeks and that's it. They are done. No more problems. Then another large % have to take a small dose continuously. And then there is me. He doesn't even have to look at my chart to know what the appointment is about. He is all on board with the diet but would like for me to expand it. I have tried to no avail. If anyone has ideas please chime in. Thanks!
Pat
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Gabes-Apg
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In line with Carols suggestion, I am thinking that Adrenals and Thyroid is causing the menopause symptoms.
Other very likely deficiencies due to the years of MC issues is probably making those symptoms worse.
My sister is using hormone creams (made by compounding pharmacy) based on her specific needs (she is tested every 6 months) She goes to a guru type specialist (who charges $500 an appointment)
She is gluten and dairy free, taking iodine, big doses of magnesium and Vit D3, B complex (active forms of B)
Prior to using the creams, she had chronic hot flushes, night sweats etc etc and she was having episodes of blanking out and fainting.
Even though your thyroid TSH test maybe in range, get iodine level test or pay to get the T3/T4 tests of the Thyroid.
I would look at trying some of the supplements that will help reduce inflammation and support adrenals.
Gut Inflammation: Vit D3, Magnesium, Vit C
Adrenals: B5, Vit C, Potassium, Magnesium, Tyrosine
Menopause symptoms: Taurine, Vit E, Calcium
The other maybe sucky part here, is maybe the foods that have been your 'safe foods' are no longer safe. I know you said you tried replacing them one at a time, but maybe it is difficult to get an indicator if the replacement is ok because of all the other things going on especially if it is the HRT meds causing the gut inflammation to be really bad...
In your case if the MC issues are because of the HRT, it is choosing the worst option, the menopause symptoms or the MC symptoms.. Not ideal
Other very likely deficiencies due to the years of MC issues is probably making those symptoms worse.
My sister is using hormone creams (made by compounding pharmacy) based on her specific needs (she is tested every 6 months) She goes to a guru type specialist (who charges $500 an appointment)
She is gluten and dairy free, taking iodine, big doses of magnesium and Vit D3, B complex (active forms of B)
Prior to using the creams, she had chronic hot flushes, night sweats etc etc and she was having episodes of blanking out and fainting.
Even though your thyroid TSH test maybe in range, get iodine level test or pay to get the T3/T4 tests of the Thyroid.
I would look at trying some of the supplements that will help reduce inflammation and support adrenals.
Gut Inflammation: Vit D3, Magnesium, Vit C
Adrenals: B5, Vit C, Potassium, Magnesium, Tyrosine
Menopause symptoms: Taurine, Vit E, Calcium
The other maybe sucky part here, is maybe the foods that have been your 'safe foods' are no longer safe. I know you said you tried replacing them one at a time, but maybe it is difficult to get an indicator if the replacement is ok because of all the other things going on especially if it is the HRT meds causing the gut inflammation to be really bad...
In your case if the MC issues are because of the HRT, it is choosing the worst option, the menopause symptoms or the MC symptoms.. Not ideal
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes,
Thanks for your response. I have been tested for thyroid, Free T3/FreeT4, and was low. I was on NP Thyroid but it never changed my labs. In fact they went down. Dr. added Levothyroxine in July and recently dropped the NP and increased Levo because this time my T3 and T4 increased dramatically but not enough. I am on Hydrocort for adrenals. I use mag oil am and pm., Vit D3, Vit C, and Cal. I don't think the HRT caused my MC because I had MC for 10 years prior to using the compounded HRT creams. But now that I am on and have been on this strict diet for a couple of years and am still having problems with MC I feel I must at least try going off the HRT and see what happens. I can always go back on them. I don't feel that I really have safe foods. These are just somewhat better than the others. I am intolerant to everything! I am hoping Carol is right and I won't have such bad menopause symptoms now. We will see! I will check out the other supplements you suggested. Thanks!
Pat
Thanks for your response. I have been tested for thyroid, Free T3/FreeT4, and was low. I was on NP Thyroid but it never changed my labs. In fact they went down. Dr. added Levothyroxine in July and recently dropped the NP and increased Levo because this time my T3 and T4 increased dramatically but not enough. I am on Hydrocort for adrenals. I use mag oil am and pm., Vit D3, Vit C, and Cal. I don't think the HRT caused my MC because I had MC for 10 years prior to using the compounded HRT creams. But now that I am on and have been on this strict diet for a couple of years and am still having problems with MC I feel I must at least try going off the HRT and see what happens. I can always go back on them. I don't feel that I really have safe foods. These are just somewhat better than the others. I am intolerant to everything! I am hoping Carol is right and I won't have such bad menopause symptoms now. We will see! I will check out the other supplements you suggested. Thanks!
Pat