Hmmmmmm. It's a complicated situation, isn't it. I would suggest that if cutting soy out of your diet doesn't do the trick, it might be a good idea at this point, to have Enterolab check a stool sample, to see if you're accidentally getting enough gluten to be causing you to react, because if you are, then cutting anything else out of your diet is not going to solve the problem. The gluten has to be totally eliminated, before any other food intolerances will matter, because gluten is always the dominant intolerance issue.
As long and as hard as you've been working to achieve remission, it's high time for you to be seeing some success, and I think that you're getting close, we just need to find the final piece of the puzzle.
Love,
Tex
Entocort Side Effects
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Tex,
I have to tell you that since I have eliminated soy, which has been a little over a week, I have had only 1 explosive event. I have had soft, yet firm, stools (sorry folks) and have gone from 20+ times a day to 4 or 5 times. I am hoping that it is because of the soy being taken out of my diet and not from the Entocort (I have been off the Entocort 3 days now). I just pray that this was the missing puzzle piece that I needed to get me on the road to remission.
On the stopping of the Entocort w/o dosing down, I had some withdrawal but not much. I finally started feeling like myself yesterday afternoon but for a day and 1/2 it was rough, especially yesterday morning. Today I feel great just the usual nausea in the morning. And for those of you who are wondering, no my GI's nurse NEVER called me back.
Love,
Rose
I have to tell you that since I have eliminated soy, which has been a little over a week, I have had only 1 explosive event. I have had soft, yet firm, stools (sorry folks) and have gone from 20+ times a day to 4 or 5 times. I am hoping that it is because of the soy being taken out of my diet and not from the Entocort (I have been off the Entocort 3 days now). I just pray that this was the missing puzzle piece that I needed to get me on the road to remission.
On the stopping of the Entocort w/o dosing down, I had some withdrawal but not much. I finally started feeling like myself yesterday afternoon but for a day and 1/2 it was rough, especially yesterday morning. Today I feel great just the usual nausea in the morning. And for those of you who are wondering, no my GI's nurse NEVER called me back.
Love,
Rose
Rose,
That's great news, though I have admit that Entocort often works that way. We'll hope that it's the diet, and I guess we'll know whether it was in a few days.
It could be that your GI's nurse hasn't called because she may be embarrassed, and just doesn't know what to say, in view of her boss's failure to take care of business. Still, it's unacceptably poor etiquette to not call at all, especially in view of the fact that you called them more than once. I'm still shaking my head over that.
Love,
Tex
That's great news, though I have admit that Entocort often works that way. We'll hope that it's the diet, and I guess we'll know whether it was in a few days.
It could be that your GI's nurse hasn't called because she may be embarrassed, and just doesn't know what to say, in view of her boss's failure to take care of business. Still, it's unacceptably poor etiquette to not call at all, especially in view of the fact that you called them more than once. I'm still shaking my head over that.
Love,
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,
Well my past experience with my GI's office has always been great. His nurse (same one) has always promptly returned my calls in the past. I am still really po'd over this b/c I called about serious s/e that I was experience and not just wanting to ask some question. I still can't believe it. I hope that it is the diet too since IF I need to see a GI in the future, it will be a new one.
Love,
Rose
Well my past experience with my GI's office has always been great. His nurse (same one) has always promptly returned my calls in the past. I am still really po'd over this b/c I called about serious s/e that I was experience and not just wanting to ask some question. I still can't believe it. I hope that it is the diet too since IF I need to see a GI in the future, it will be a new one.
Love,
Rose
Tex,
It has been over a week since I have stopped the Entocort and my eyes are still blurry at a distance. I still have incredible headaches as well. I do wear glasses, but I have never had to wear them all the time, just when I read or watch TV. So I went to the eye doctor this past week and she said that my eyes are really bad and re-checked them b/c the new prescription is so far from what I was wearing. Could the Entocort really mess me up that bad? I was not having any problems before I took this stuff.
Just wondering and thought that I would get your opinion on this.
Love,
Rose
It has been over a week since I have stopped the Entocort and my eyes are still blurry at a distance. I still have incredible headaches as well. I do wear glasses, but I have never had to wear them all the time, just when I read or watch TV. So I went to the eye doctor this past week and she said that my eyes are really bad and re-checked them b/c the new prescription is so far from what I was wearing. Could the Entocort really mess me up that bad? I was not having any problems before I took this stuff.
Just wondering and thought that I would get your opinion on this.
Love,
Rose
Rose,
I'm glad you posted about this, rather than to continue to suffer in silence, because something is obviously going on. Yes, the corticosteroids can sometimes cause permanent damage by inducing a condition known as Central Serous Retinopathy, (CSR). Since you are a "type A" personality, you may possibly be more susceptible to CSR than the general population. In some cases, this issue has even been known to cause glaucoma. I don't want to scare you, because being a thousand miles away, I have no idea what your eyes look like, other than what you have posted, but in case of a misunderstanding, I would rather err on the safe side. The big question is whether or not you have increased eye pressure. If you are having severe pain and nausea, blurred vision, and eye redness, (in one or both eyes), this can indicate a condition requiring urgent attention, because if not treated promptly, it's possible that blindness can occur in a few days, in some cases, if the pressure is high enough.
Chances are, your situation is not that urgent, (I certainly hope not, anyway). For background information, please consider these quotes from Wikopedia:
An issue such as this, is a good example of why your doctors failure to respond to your plea for his expert advice, following his prescribing a corticosteroid, could be viewed as malpractice, IMO. I hope with all my heart that this is just a minor issue, and no permanent damage has been done.
I can't say with any certainty at all, (especially over the internet), whether or not this is actually the problem that you are experiencing, but it's certainly a possibility, IMO. If you feel that you need to go to an urgent care center, or an ER, to get your eye pressure checked, please do so. If not, please get this checked out with an opthalmologist, or a retina specialist, ASAP, tomorrow.
Love,
Tex
I'm glad you posted about this, rather than to continue to suffer in silence, because something is obviously going on. Yes, the corticosteroids can sometimes cause permanent damage by inducing a condition known as Central Serous Retinopathy, (CSR). Since you are a "type A" personality, you may possibly be more susceptible to CSR than the general population. In some cases, this issue has even been known to cause glaucoma. I don't want to scare you, because being a thousand miles away, I have no idea what your eyes look like, other than what you have posted, but in case of a misunderstanding, I would rather err on the safe side. The big question is whether or not you have increased eye pressure. If you are having severe pain and nausea, blurred vision, and eye redness, (in one or both eyes), this can indicate a condition requiring urgent attention, because if not treated promptly, it's possible that blindness can occur in a few days, in some cases, if the pressure is high enough.
Chances are, your situation is not that urgent, (I certainly hope not, anyway). For background information, please consider these quotes from Wikopedia:
Central serous retinopathy (CSR), also known as central serous chorioretinopathy (CSC), is a visual impairment, often temporary, usually in one eye, mostly affecting males in the age group 20 to 50 but which may also affect women[1]. The disorder is characterized by leakage of fluid in the central macula, which results in blurred or distorted vision (metamorphopsia). A blind or gray spot in the central vision is common, along with flashes of light (photopsia).
http://en.wikipedia.org/wiki/Central_serous_retinopathyCSR is a fluid detachment of macula layers from their supporting tissue. This allows choroidal fluid to leak into the subretinal space. The buildup of fluid seems to occur because of small breaks in the retinal pigment epithelium.
CSR is sometimes called idiopathic CSR which means that its cause is unknown. Nevertheless, stress appears to play an important role. An oft-cited but potentially inaccurate conclusion is that persons in stressful occupations, such as airplane pilots, have a higher incidence of CSR. The "type A personality" has also been linked to this condition. However, the statistics may be skewed by the fact that CSR often goes undiagnosed or misdiagnosed; airline pilots and so-called "type A" people are demonstrably exacting, demanding people with (certainly in the case of pilots) better-than-average vision. They are more likely than the general population to notice the sometimes-subtle degradation of vision caused by CSR and insist on a believable diagnosis of it. People who need glasses may assume that the blurriness caused by CSR is simply a change in their prescription, and fail to have the condition assessed by a retinal specialist. These statistic-skewing factors undermine the conclusion that CSR is a condition specific to "type A" people.
CSR has also been associated with cortisol and corticosteroids, and persons with higher levels of cortisol than normal also have a higher propensity to suffer from CSR. Cortisol is a hormone secreted by the adrenal cortex which allows the body to deal with stress, which may explain the CSR-stress association. There is extensive evidence to the effect that corticosteroids ("cortisone") --- commonly used to treat inflammations, allergies, skin conditions and even certain eye conditions --- can trigger CSR, aggravate it and cause relapses.[2][3][4
An issue such as this, is a good example of why your doctors failure to respond to your plea for his expert advice, following his prescribing a corticosteroid, could be viewed as malpractice, IMO. I hope with all my heart that this is just a minor issue, and no permanent damage has been done.
I can't say with any certainty at all, (especially over the internet), whether or not this is actually the problem that you are experiencing, but it's certainly a possibility, IMO. If you feel that you need to go to an urgent care center, or an ER, to get your eye pressure checked, please do so. If not, please get this checked out with an opthalmologist, or a retina specialist, ASAP, tomorrow.
Love,
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.
Eye complications in IBD (CCFA)
I know this is different than the issue about which Tex is speaking.
I just happened to see my copy of this when I was punching holes in it to put in my huge notebook of health info (mostly MC, of course).
http://www.ccfa.org/media/pdf/FactSheets/eyes.pdf
I just happened to see my copy of this when I was punching holes in it to put in my huge notebook of health info (mostly MC, of course).
http://www.ccfa.org/media/pdf/FactSheets/eyes.pdf
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Tex,
When I saw my eye doctor last week, she dialated my eyes to check for gluacoma and she said I was ok. I think that they also check the pressure in my eyes as well since I told her the reason I was getting my eyes examined was because they were blurry since I took the steriods. You know when I first started taking the Entocort my right eye was watering all the time for about 4 days. I am seeing my GP tomorrow and will bring this up with him as well.
Thank you so much for this information.
Love,
Rose
When I saw my eye doctor last week, she dialated my eyes to check for gluacoma and she said I was ok. I think that they also check the pressure in my eyes as well since I told her the reason I was getting my eyes examined was because they were blurry since I took the steriods. You know when I first started taking the Entocort my right eye was watering all the time for about 4 days. I am seeing my GP tomorrow and will bring this up with him as well.
Thank you so much for this information.
Love,
Rose