The good news is, my PCP ordered a re-staining of my colonoscopy biopsies for mast cells (at Dr. Lewey' s request), and it was negative. Not sure what the levels actually were, so I will call her tomorrow to find out. I suspected it would be negative, since high-histamine and histamine-releasing foods haven't seemed to cause me too much trouble. I'm thankful at least for that.
The bad news is, Kaiser won't pay for Dr. Lewey to do the endoscopy, because it is "available in-network." I'm fairly sure my Kaiser GI won't feel it's necessary (after all, my "very reliable" blood work was negative for celiac - though they didn't check for selective IgA deficiency). So that's not going to happen.
Meantime in spite of being GF, DF, SF, EF, sugar-free, citrus free, and off pretty much all preservatives, additives, artificial anything, and most fruits and vegetables (especially unprepared and uncooked ones) for months (GF, sugar and artificial stuff since November, DF and citrus since December, the rest since February), I'm still nowhere near Norman. I had a pretty good week last week, with no episodes of WD for an entire week - but they are back again this week, twice in the last two days, and I'm still having 4-5 bm.'s a day. That's better than the 10-12 I was having, but still way too many.
And I am discouraged. I find myself wondering whether this is worth it. Is it really going to work? Or am I depriving myself for nothing? I come here and read about folks who are much worse off than I am, and I feel badly for complaining, but I'm so frustrated. I don't have the money for the medical stuff I'd like to do, or for the supplements I need. I have Entocort, but I don't know whether to take it since I want to be able to tell what is safe and what is causing inflammation (though I'm still having trouble telling, even without the Entocort). Ugh!
Sorry for the pity party - thanks for bearing with me. I appreciate all the support on this board - don't know what I'd do without you guys!
Good news - bad news
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Deanna,
You sound exactly like me exactly a year ago. I was eating hardly anything and losing weight, I am small, but got down to 102 pounds. I did take the Entocort and it was a life saver. Gradually, I was able to eat more foods, still staying GF, DF, SF, and EF. I was on Entocort for about 7 months and everytime I started coming off the D was back again. I have a wonderful doctor and he suggested Imuran. I was apprehensive and spoke with Joe and Celie (both members here) who have been on it and decided to go for it. Once I began taking that I was able to wean off of the Entocort. A lot of people stay on Entocort in small doses much longer with no side effects. I would take it in a heartbeat if needed. That's just my opinion.
Nancy
You sound exactly like me exactly a year ago. I was eating hardly anything and losing weight, I am small, but got down to 102 pounds. I did take the Entocort and it was a life saver. Gradually, I was able to eat more foods, still staying GF, DF, SF, and EF. I was on Entocort for about 7 months and everytime I started coming off the D was back again. I have a wonderful doctor and he suggested Imuran. I was apprehensive and spoke with Joe and Celie (both members here) who have been on it and decided to go for it. Once I began taking that I was able to wean off of the Entocort. A lot of people stay on Entocort in small doses much longer with no side effects. I would take it in a heartbeat if needed. That's just my opinion.
Nancy
Deanna,
I totally relate to your frustration - it's really, really tough when you're depriving yourself and essentially turning your life upside down, with what appears to be only marginal results.
The first few months after going gluten free, I kept a diary of everything I ate and every BM and MC symptom I had. I kept my focus on the number of BM's rather than the quality, and as long as that number decreased I considered it a victory. After over a year and a half of dealing with the restricted diet, I still do not have consistent "firm" BM's, which causes me a lot of frustration. However, since I'm feeling so much better in every way, and know that I'm on my way to better health, I somehow manage to talk myself out of the "funk". I think the hardest thing for me to handle, is my apparent helplessness in bringing about the results I'm working so diligently to achieve. MC seems to rule no matter how "good" I am.
All of that said, we each have our own personal ways of handling this disease, and no two of us are alike. We each have to find our way to something that's workable for us. Trying entocort might be the right thing for you at this point in time, as it has helped so many here. I can sense your very strong desire to avoid it, but just remember that nothing is for ever, and with MC you have to make decisions as you go along that agree with you at the time.
On another note, I finally found the coconut milk I was telling you about - they have it at the supermarkets (Albertson's, King Sooper's, etc.) in the Asian sections. The name is Chaokoh and the only ingredients are Coconut Extract, Water, Citric Acid and Sodium Metabisulfite. I made some really nice butternut squash soup with it yesterday.
Hang in there, it WILL get better!!!
Love,
Kari
I totally relate to your frustration - it's really, really tough when you're depriving yourself and essentially turning your life upside down, with what appears to be only marginal results.
The first few months after going gluten free, I kept a diary of everything I ate and every BM and MC symptom I had. I kept my focus on the number of BM's rather than the quality, and as long as that number decreased I considered it a victory. After over a year and a half of dealing with the restricted diet, I still do not have consistent "firm" BM's, which causes me a lot of frustration. However, since I'm feeling so much better in every way, and know that I'm on my way to better health, I somehow manage to talk myself out of the "funk". I think the hardest thing for me to handle, is my apparent helplessness in bringing about the results I'm working so diligently to achieve. MC seems to rule no matter how "good" I am.
All of that said, we each have our own personal ways of handling this disease, and no two of us are alike. We each have to find our way to something that's workable for us. Trying entocort might be the right thing for you at this point in time, as it has helped so many here. I can sense your very strong desire to avoid it, but just remember that nothing is for ever, and with MC you have to make decisions as you go along that agree with you at the time.
On another note, I finally found the coconut milk I was telling you about - they have it at the supermarkets (Albertson's, King Sooper's, etc.) in the Asian sections. The name is Chaokoh and the only ingredients are Coconut Extract, Water, Citric Acid and Sodium Metabisulfite. I made some really nice butternut squash soup with it yesterday.
Hang in there, it WILL get better!!!
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Deanna,
I'm sorry about your insurance. The more I hear about Kaiser, the more I'm thankful that I've never had to deal with them.
I understand how you would feel discouraged. There is no lonelier, more depressing feeling than to be dealing with this disease on a daily basis, and not seeing any signs of hope, after months and months of treatment. It took me a year and a half, after starting the GF diet, to figure out everything that was causing my problems, and to get them out of my diet. I learned to live life one day at a time, until one day I was finally able to climb out of the pit, and enjoy the sunshine, again.
We all respond to the diet differently. Some of us see slow but fairly steady improvement, while some of us see nothing but hopelessness, until suddenly one day, we turn the corner and seem to recover virtually overnight. You may be very close to remission, but the cruelty of the situation is that there is no way to tell, until we get there.
If the situation is really beginning to weigh on you, taking Entocort could change your whole outlook, within a few days. It should work rather quickly, if it's going to, since you've been on the diet for several months. After things settle down, and you've regained your confidence, and enjoyed a respite from the miserable symptoms for a while, you can always taper the dose, and begin searching for other food-sensitivities at that point. Sometimes we need a break, to renew out outlook on life.
I'm not advising you to take it - I wasn't even aware that Entocort existed, back when I was recovering. I'm just pointing out that Entocort is an option that can provide some temporary benefits, that can make life a lot easier while the diet is helping your digestive system to heal. We all have to choose our own path back to health, though, and no one understands our own situation better than we do, so the decision has to be yours alone.
Tex
I'm sorry about your insurance. The more I hear about Kaiser, the more I'm thankful that I've never had to deal with them.
I understand how you would feel discouraged. There is no lonelier, more depressing feeling than to be dealing with this disease on a daily basis, and not seeing any signs of hope, after months and months of treatment. It took me a year and a half, after starting the GF diet, to figure out everything that was causing my problems, and to get them out of my diet. I learned to live life one day at a time, until one day I was finally able to climb out of the pit, and enjoy the sunshine, again.
We all respond to the diet differently. Some of us see slow but fairly steady improvement, while some of us see nothing but hopelessness, until suddenly one day, we turn the corner and seem to recover virtually overnight. You may be very close to remission, but the cruelty of the situation is that there is no way to tell, until we get there.
If the situation is really beginning to weigh on you, taking Entocort could change your whole outlook, within a few days. It should work rather quickly, if it's going to, since you've been on the diet for several months. After things settle down, and you've regained your confidence, and enjoyed a respite from the miserable symptoms for a while, you can always taper the dose, and begin searching for other food-sensitivities at that point. Sometimes we need a break, to renew out outlook on life.
I'm not advising you to take it - I wasn't even aware that Entocort existed, back when I was recovering. I'm just pointing out that Entocort is an option that can provide some temporary benefits, that can make life a lot easier while the diet is helping your digestive system to heal. We all have to choose our own path back to health, though, and no one understands our own situation better than we do, so the decision has to be yours alone.
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.
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Hi Deanna. We all feel your frustration. I went on Entocort about a month of my diagnosis. At the same time I took almost all the things out of my diet that you have. This drug is a life saver. I only go once a day and it is usually pretty norman. I didn't want to do it either, but , as Tex said. it gives you a break from trying to figure it all out. It also helps your intestines to heal because it brings the inflammation down. I Have stepped down from three pills to two a day and was planning on trying to ween more, but after reading all of the info on this site, i think I will stay on it longer than I originally thought . I have had no side effects from it.
You also might want to consider not eating the group of foods called "nightshades". Some people get D from them. The main culprits are white potatoes, tomatoes, peppers, and eggplant. I KNOW....POTATOES! My plan is to test some of these foods ( along with salad and some fruit) down the road when I am down to one pill. Even though I can't have many things right now, at least I can live my life without worrying about pain, bloating, and bathroom trips.
We all have to make our own decisions, but know that there is relief if you choose .... and although Kaiser isn't perfect, they do cover Entocort! ( I hear it is expensive)
Leah
You also might want to consider not eating the group of foods called "nightshades". Some people get D from them. The main culprits are white potatoes, tomatoes, peppers, and eggplant. I KNOW....POTATOES! My plan is to test some of these foods ( along with salad and some fruit) down the road when I am down to one pill. Even though I can't have many things right now, at least I can live my life without worrying about pain, bloating, and bathroom trips.
We all have to make our own decisions, but know that there is relief if you choose .... and although Kaiser isn't perfect, they do cover Entocort! ( I hear it is expensive)
Leah
Tex wrote:
Kaiser is notorious among paramedics, including my DH, they would go out of their way to NOT transport to Kaiser hospitals. If you have another option, I would recommend it.I'm sorry about your insurance. The more I hear about Kaiser, the more I'm thankful that I've never had to deal with them.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Nancy - yep, that sounds like me. I weighed about 115 when I started on this diet. I am 5'4" tall, and got down to 100 lbs in spite of working very closely with a dear friend who's a nutritionist/naturopathic doctor. She's helped me gain back about 5 lbs, but I really need another 5-10 - people who see me often are still commenting on how tiny I am. I haven't weighed this little since I was 17.
Kari - I can relate about the helplessness, no matter what we do. When I am doing better, I feel like all the deprivation is worth it (most of the time); when I'm up three times in the night with WD like I was last night, I wonder why I bother. Thanks for the info about the coconut milk. I may try it at some point. I discovered when my dd was struggling with corn allergy that citric acid usually comes from corn; let me know if you are able to use that coconut milk without too much trouble. I'm thinking Lesley's ice cream sounds like a plan!
Tex - really, it's possible to suddenly turn a corner and get better after months of diet? That would be nice. I haven't decided about the Entocort - I am so tiny and tend to be sensitive to medications as it is. I'm concerned about side effects as well as wanting to keep tabs on how I'm responding to the diet. I'd take less, but from what I've read here it sounds like that's not recommended. And I'm worried that the year and a half it took you to find and eliminate all your irritants would only be extended if I take Entocort.
Cynthia - yes, my nutritionist friend got me started on a food diary months before I was even diagnosed with MC. So far it seems to have helped a little in figuring out a few foods that seem safer than others, but that's about it.
Leah - is there a reason you continue to limit yourself so much while on the Entocort? I was assuming if I went on that, I would stay off gluten, dairy, soy, egg, and the things I've shown a reaction to on the skin test a few years ago (almonds, peanuts, and corn); otherwise I figured if I was pretty much Norman I'd expand my diet a bit since I have no definitive evidence that I'm reacting to anything else. That's part of why I'm trying to stay off the Endicott - so I can see what I shouldn't eat.
Stanz - my dh and I have always said Kaiser is great, as long as you don't get sick, especially with anything unusual. We've had Kaiser for 10 years, and we've never had a problem, until now. Unfortunately we have no other option so we are stuck with them. :-(
Thank you all so much for the encouragement. Days like today, when I'm in the bathroom 9 times, the whole thing just feels pointless. If I didn't know I'd almost certainly get worse, I'm not sure I'd bother - but I don't want to ignore it and end up like others here. I'd rather deal with it at the LC stage than end up with CC or worse - CD or RA or other more serious (and painful) diseases. Anyway, your kind words keep me going.
Thanks again,
Deanna
Kari - I can relate about the helplessness, no matter what we do. When I am doing better, I feel like all the deprivation is worth it (most of the time); when I'm up three times in the night with WD like I was last night, I wonder why I bother. Thanks for the info about the coconut milk. I may try it at some point. I discovered when my dd was struggling with corn allergy that citric acid usually comes from corn; let me know if you are able to use that coconut milk without too much trouble. I'm thinking Lesley's ice cream sounds like a plan!
Tex - really, it's possible to suddenly turn a corner and get better after months of diet? That would be nice. I haven't decided about the Entocort - I am so tiny and tend to be sensitive to medications as it is. I'm concerned about side effects as well as wanting to keep tabs on how I'm responding to the diet. I'd take less, but from what I've read here it sounds like that's not recommended. And I'm worried that the year and a half it took you to find and eliminate all your irritants would only be extended if I take Entocort.
Cynthia - yes, my nutritionist friend got me started on a food diary months before I was even diagnosed with MC. So far it seems to have helped a little in figuring out a few foods that seem safer than others, but that's about it.
Leah - is there a reason you continue to limit yourself so much while on the Entocort? I was assuming if I went on that, I would stay off gluten, dairy, soy, egg, and the things I've shown a reaction to on the skin test a few years ago (almonds, peanuts, and corn); otherwise I figured if I was pretty much Norman I'd expand my diet a bit since I have no definitive evidence that I'm reacting to anything else. That's part of why I'm trying to stay off the Endicott - so I can see what I shouldn't eat.
Stanz - my dh and I have always said Kaiser is great, as long as you don't get sick, especially with anything unusual. We've had Kaiser for 10 years, and we've never had a problem, until now. Unfortunately we have no other option so we are stuck with them. :-(
Thank you all so much for the encouragement. Days like today, when I'm in the bathroom 9 times, the whole thing just feels pointless. If I didn't know I'd almost certainly get worse, I'm not sure I'd bother - but I don't want to ignore it and end up like others here. I'd rather deal with it at the LC stage than end up with CC or worse - CD or RA or other more serious (and painful) diseases. Anyway, your kind words keep me going.
Thanks again,
Deanna
Deanna,
Despite what you've read here about taking the full dose of Entocort, all drug dosages are definitely weight-dependent, and the dosage is typically developed during trials, based on an "average" subject, with a weight in the neighborhood of around 150 pounds. At your current weight, 6 mg should give you approximately the same degree of control as 9 mg would for a 150 pound individual.
Also be aware that we have at least 2 members whom I can recall, who are sensitive to budesonide, so they have never been able to take more than 3 mg per day, because of neurological side effects, but 3 mg provides full control for them. IOW, as always, there are exceptions for every rule.
Tex
Despite what you've read here about taking the full dose of Entocort, all drug dosages are definitely weight-dependent, and the dosage is typically developed during trials, based on an "average" subject, with a weight in the neighborhood of around 150 pounds. At your current weight, 6 mg should give you approximately the same degree of control as 9 mg would for a 150 pound individual.
Also be aware that we have at least 2 members whom I can recall, who are sensitive to budesonide, so they have never been able to take more than 3 mg per day, because of neurological side effects, but 3 mg provides full control for them. IOW, as always, there are exceptions for every rule.
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.
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Deanna, I'm sorry to hear about the rough patch your in right now. This can be and is a tough condition to deal with. I've been dealng with MC and Crohns now for about 2 years and I think I've got my diet figured out but even with that, things can go bad quickly as happened these past 2 weeks. I did just have a colonoscopy but thought I was bouncing back and then everything broke loose. This by far is the worst flare yet...I am very thankful for the Entocort as in 3 days it stopped it cold. I don't need it often but I'm glad it's there when I do.
Like Celie and NancyL I am also on Imuran and it does for the most part keep things under control. With it I have only had to use Entocort twice for 6 weeks each in 2 years. All of these meds have their risks and thier benefits. Of course only you can decide whats best for you.
I think even with our diets as perfectly tuned as we can get them, we can still have a flare up. I can easily imagine a simple virus or allergies stirring things up independent of food and bringing on a flare. It's springtime and allergies can certainly be a problem for many of us. My view on meds is if we can avoid them great, but they are like tools in the toolbox, sometimes we need a tool to fix a problem and without the tool the problem will persist much longer than it needs to. As much as it would be great to avoid meds, we do have to think about quality of life, that's important as well. Feeling this poorly for long periods of time takes its toll not only physically but emotionally as well.
I hope you feel better soon.
Like Celie and NancyL I am also on Imuran and it does for the most part keep things under control. With it I have only had to use Entocort twice for 6 weeks each in 2 years. All of these meds have their risks and thier benefits. Of course only you can decide whats best for you.
I think even with our diets as perfectly tuned as we can get them, we can still have a flare up. I can easily imagine a simple virus or allergies stirring things up independent of food and bringing on a flare. It's springtime and allergies can certainly be a problem for many of us. My view on meds is if we can avoid them great, but they are like tools in the toolbox, sometimes we need a tool to fix a problem and without the tool the problem will persist much longer than it needs to. As much as it would be great to avoid meds, we do have to think about quality of life, that's important as well. Feeling this poorly for long periods of time takes its toll not only physically but emotionally as well.
I hope you feel better soon.
Joe
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Joe,
When you go on Entocort for a flare like the one you describe, how long would you stay on it? I hear about folks staying on it for exactly the time listed in the instructions, and about folks staying on it for months or years. Then I hear that it gets less effective the longer you use it, and that it isn't as effective if you go into a second time (or a third, or a fourth). But it sounds like you use it temporarily then go back off it. I'd be more willing to go on it for a brief period, to give me a few days or a week of "breathing space," than to commit to an 8-week or longer course.
Just wondering and sort of "thinking out loud."
Deanna
PS I've lived with the D for a long time - maybe 10 years? - though it has gotten progressively worse. I suppose that might be why I'm more willing to live with the problem than to risk the meds.
When you go on Entocort for a flare like the one you describe, how long would you stay on it? I hear about folks staying on it for exactly the time listed in the instructions, and about folks staying on it for months or years. Then I hear that it gets less effective the longer you use it, and that it isn't as effective if you go into a second time (or a third, or a fourth). But it sounds like you use it temporarily then go back off it. I'd be more willing to go on it for a brief period, to give me a few days or a week of "breathing space," than to commit to an 8-week or longer course.
Just wondering and sort of "thinking out loud."
Deanna
PS I've lived with the D for a long time - maybe 10 years? - though it has gotten progressively worse. I suppose that might be why I'm more willing to live with the problem than to risk the meds.
Deanna,
I understand your frustration and discouragement. I have felt the same way many times.
I've always written that Entocort is a miracle drug, and it was for me for several years. It is not very effective for me since I've tried to get off of it several times, and my gut doesn't respond to it much anymore. I've felt the same as you about the illusion it gives us that we are healed. Certainly I wouldn't have tried to get off of it several times if I didn't think I was healed. It also can take several weeks to begin deteriorating and realize that we are not healed after all.
I wonder if you've tried Imodium? I shunned it for years, favoring Entocort instead. I tried Imodium for a week before I was Dx'd, taking the two pills a day that were recommended. It bound me up so much that I avoided it from then on. Now I've found that the right dosage can work as well as Entocort. I took it for a while when I was off Entocort, and it worked well. I'm taking 1/2 pill a day now in conjunction with Entocort and hope I can eventually drop my Entocort dosage even more, increasing Imodium as needed. The nice thing about Imodium is that you can stop it for a day or two and you will get immediate feedback. You can cut the pills in half to tailor the dosage for your needs. It's certainly cheaper.
I hope others share their experiences with Imodium. I have a feeling that it doesn't work as well as Entocort, but perhaps more of us can reduce our dependance on Entocort if we use them both together.
Gloria
I understand your frustration and discouragement. I have felt the same way many times.
I've always written that Entocort is a miracle drug, and it was for me for several years. It is not very effective for me since I've tried to get off of it several times, and my gut doesn't respond to it much anymore. I've felt the same as you about the illusion it gives us that we are healed. Certainly I wouldn't have tried to get off of it several times if I didn't think I was healed. It also can take several weeks to begin deteriorating and realize that we are not healed after all.
I wonder if you've tried Imodium? I shunned it for years, favoring Entocort instead. I tried Imodium for a week before I was Dx'd, taking the two pills a day that were recommended. It bound me up so much that I avoided it from then on. Now I've found that the right dosage can work as well as Entocort. I took it for a while when I was off Entocort, and it worked well. I'm taking 1/2 pill a day now in conjunction with Entocort and hope I can eventually drop my Entocort dosage even more, increasing Imodium as needed. The nice thing about Imodium is that you can stop it for a day or two and you will get immediate feedback. You can cut the pills in half to tailor the dosage for your needs. It's certainly cheaper.
I hope others share their experiences with Imodium. I have a feeling that it doesn't work as well as Entocort, but perhaps more of us can reduce our dependance on Entocort if we use them both together.
Gloria
You never know what you can do until you have to do it.
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Deanna, in total I have been on it 3 times. The first time was right after diagnosis and I was a real mess, I was just starting to address diet and was on it for about 8 months. I had tried the slow taper off it twice unsucessfully after being GF, DF and SF for 5 months and then for my case I went onto the imuran which worked as my long term maintenace med. The next time was just about a year ago and I was on it for about 6 weeks and this time my doc gave me 8 weeks worth. So far I have not noticed it being less effective each time. As I mentioned I do take another med as well regularly that I'm sure is helping out as well.
From what I have read here the length of time varies per individual, but I do get the sense that if the diet is under control, the time needed is less. I have seen this trend on the Crohns boards I'm a member of as well. Overall as each of us is different you should be able to try it out and see how well it works and maybe after 5 or 6 weeks try tapering off SLOWLY...that also seems to be a factor. Stopping it suddenly does not cause any withdrawal symptoms like woth other steroids, but it seems that others have had the symptoms come back unless they go slowly. I have never read that in the literature in Entocort, it just seems to be various patients experience.
Like Tex mentioned you may be a candidate for taking 6 mg. I would say start at the higher dose, the prescribed 9mg to settle things down and to see how well you tolerate it. If all goes well maybe after a week or so try 6 mg and then go for the 5 or 6 weeks like that followed by a slow taper. You can talk to NancyL or Celie who I know have done that successfully. There may be others but I don't recall. I would stay on it for at least 4 weeks to give things a chance to heal, going on it for short spurts I don't believe will be giving you any real healing or lasting benefit.
As far as steroids go, entocort is the safest by far and the easiest on your body as a whole. Last week I was given a high dose of a version of prednisone with a fast taper, while that worked well, it made me feel awful. Entocort for most of us does not cause any real side effects, I'm thankfull I have it this week.
I hope things work out if you do decide to try it...overall it is well tolerated.
From what I have read here the length of time varies per individual, but I do get the sense that if the diet is under control, the time needed is less. I have seen this trend on the Crohns boards I'm a member of as well. Overall as each of us is different you should be able to try it out and see how well it works and maybe after 5 or 6 weeks try tapering off SLOWLY...that also seems to be a factor. Stopping it suddenly does not cause any withdrawal symptoms like woth other steroids, but it seems that others have had the symptoms come back unless they go slowly. I have never read that in the literature in Entocort, it just seems to be various patients experience.
Like Tex mentioned you may be a candidate for taking 6 mg. I would say start at the higher dose, the prescribed 9mg to settle things down and to see how well you tolerate it. If all goes well maybe after a week or so try 6 mg and then go for the 5 or 6 weeks like that followed by a slow taper. You can talk to NancyL or Celie who I know have done that successfully. There may be others but I don't recall. I would stay on it for at least 4 weeks to give things a chance to heal, going on it for short spurts I don't believe will be giving you any real healing or lasting benefit.
As far as steroids go, entocort is the safest by far and the easiest on your body as a whole. Last week I was given a high dose of a version of prednisone with a fast taper, while that worked well, it made me feel awful. Entocort for most of us does not cause any real side effects, I'm thankfull I have it this week.
I hope things work out if you do decide to try it...overall it is well tolerated.
Joe
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Gloria,
Do you have CC or LC? Did you see my post that Dr. Lewey told me those with CC have a much harder time tapering off Entocort?
I have so far avoided Imodium after the time some years ago when I tried it and it bound me up, leaving me miserable with gas pains and cramping for several days. It didn't help that my Dr's office and even my GI doc thought that was the first, most basic solution to every problem (even without a diagnosis and even though I'd had chronic and worsening D for perhaps 10 years, if not more - and without even testing for celiac!).
I might try it again sometime. You're right that feedback with Imodium is a lot faster than it would be with Entocort. One reason I'm avoiding it so far is that I'm trying to avoid ending up where you (and others on this forum) are.
Has anyone here tried Lomotil rather than Imodium? I have had better results with Lomotil - it doesn't seem quite so harsh somehow.
Deanna
Do you have CC or LC? Did you see my post that Dr. Lewey told me those with CC have a much harder time tapering off Entocort?
I have so far avoided Imodium after the time some years ago when I tried it and it bound me up, leaving me miserable with gas pains and cramping for several days. It didn't help that my Dr's office and even my GI doc thought that was the first, most basic solution to every problem (even without a diagnosis and even though I'd had chronic and worsening D for perhaps 10 years, if not more - and without even testing for celiac!).
I might try it again sometime. You're right that feedback with Imodium is a lot faster than it would be with Entocort. One reason I'm avoiding it so far is that I'm trying to avoid ending up where you (and others on this forum) are.
Has anyone here tried Lomotil rather than Imodium? I have had better results with Lomotil - it doesn't seem quite so harsh somehow.
Deanna
Hi Deanna,
You are asking great questions btw.
I'm a 5'7" woman who weighed 125 pounds when I went on Entocort-starting w/ the 3 pills per day. I responded pretty quickly to the 3 pills per day. Within 3 days I had solid bm's. By 3 weeks I got constipation and stepped down to 2 pills. Both Tex and Joe have really valid comments if you decide to go on the drug.
Re: your comments regarding figuring out problematic foods. For months after diagnosis and after finding this board I was unable to figure out problematic foods. I didn't even understand the discussions and although I was on a pretty simplistic diet everything seemed to be problematic. It was only after 4 mths that I could tell quinoa was problematic and 6 mths that I could tell rice and corn chips were problematic. I've now been able to add back rice and udis rice bread with no problems. I seem to have been particularly sensitive to grains during flare although it took me awhile to figure that out. Your diet appears to be stellar.
I was diagnosed with CC but had only had WD for 4 mths b/f diagnosis. I've been off of Entocort now for 3 mths.
Best wishes, keep us posted, you are asking great questions, Brandy
You are asking great questions btw.
I'm a 5'7" woman who weighed 125 pounds when I went on Entocort-starting w/ the 3 pills per day. I responded pretty quickly to the 3 pills per day. Within 3 days I had solid bm's. By 3 weeks I got constipation and stepped down to 2 pills. Both Tex and Joe have really valid comments if you decide to go on the drug.
Re: your comments regarding figuring out problematic foods. For months after diagnosis and after finding this board I was unable to figure out problematic foods. I didn't even understand the discussions and although I was on a pretty simplistic diet everything seemed to be problematic. It was only after 4 mths that I could tell quinoa was problematic and 6 mths that I could tell rice and corn chips were problematic. I've now been able to add back rice and udis rice bread with no problems. I seem to have been particularly sensitive to grains during flare although it took me awhile to figure that out. Your diet appears to be stellar.
I was diagnosed with CC but had only had WD for 4 mths b/f diagnosis. I've been off of Entocort now for 3 mths.
Best wishes, keep us posted, you are asking great questions, Brandy