Hi all, hope everyone had a wonderful Easter weekend!
So I've been on the doubled prednisone for 3 weeks now nd today I think it finally decided to kick in. BUT I am now bloated and miserable. I cannot get comfortable sitting, or lying down and my stomach is hard and distended. I go to the new GI doctor Tuesday. I am so miserable and in so much pain I want to sop the prednisone but am afraid it will take me back to living in the bathroom.
Any suggestions????
Dawn
from one extreme to the other
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Dawn,
That does not sound like fun. I'm sure you know not to stop the prednisone suddenly - it needs to be tapered.
What are your plans? Will you be tapering the pred. and adding Entocort? What about diet? Have you made any modifications yet?
Nosy, aren't I? Hope you feel better.
Hugs,
Polly
That does not sound like fun. I'm sure you know not to stop the prednisone suddenly - it needs to be tapered.
What are your plans? Will you be tapering the pred. and adding Entocort? What about diet? Have you made any modifications yet?
Nosy, aren't I? Hope you feel better.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
Yes I know about tapering the prednisone, I HATE the stuff!!
I would like to taper the prednisone and go to the Entocort, b/c that seems to be the med that seems to helping people. I have a new DR to go to tomorrow and I am going to discuss that with him. I have a list of questions form just being on this site that I am taking in with me. This site has a lot of information that the doctors don't seem to have.
Yes I have cut out all gluten and dairy from my diet, its been hard but I am doing it because I want my life back! I am only 5'2" and petite frame and I have lost over 30 pounds since early January. I cant lose much more or my husband says he wont let me go outside for fear Ill get blown away! LOL I weigh less than I did in high school. All my clothes are huge on me but I don't want to spend the money to get clothes that fit because I will heal at some point, right?
I am taking a trip the last week in May to Texas from Indiana, I am praying hard that I will be able to make the trip and be better by then.
My doctor put me on disability early March because I am so weak and have dizzy spells and have to be close to a bathroom. The meds he has me on are messing with my eyes as well, blurred vision.
I've never been so sick and Im only 40. I shouldn't be sick enough to be on disability at this age! Im so afraid of losing my job because of this disease.
Sorry I didn't mean to go on and on......Im so exhausted and frustrated and starting to get angry!
Thanks for responding and just listening :-)
Hugs,
Dawn
Yes I know about tapering the prednisone, I HATE the stuff!!
I would like to taper the prednisone and go to the Entocort, b/c that seems to be the med that seems to helping people. I have a new DR to go to tomorrow and I am going to discuss that with him. I have a list of questions form just being on this site that I am taking in with me. This site has a lot of information that the doctors don't seem to have.
Yes I have cut out all gluten and dairy from my diet, its been hard but I am doing it because I want my life back! I am only 5'2" and petite frame and I have lost over 30 pounds since early January. I cant lose much more or my husband says he wont let me go outside for fear Ill get blown away! LOL I weigh less than I did in high school. All my clothes are huge on me but I don't want to spend the money to get clothes that fit because I will heal at some point, right?
I am taking a trip the last week in May to Texas from Indiana, I am praying hard that I will be able to make the trip and be better by then.
My doctor put me on disability early March because I am so weak and have dizzy spells and have to be close to a bathroom. The meds he has me on are messing with my eyes as well, blurred vision.
I've never been so sick and Im only 40. I shouldn't be sick enough to be on disability at this age! Im so afraid of losing my job because of this disease.
Sorry I didn't mean to go on and on......Im so exhausted and frustrated and starting to get angry!
Thanks for responding and just listening :-)
Hugs,
Dawn
Oh Dawn,
You have really been through the wringer.
It can be so difficult dealing with this disease. But don't lose hope - I know you've seen here how people are able to get their lives back again. It WILL in all likelihood happen for you, but it does require a ton of patience (and thinking outside of the box). I hope things go well with your doc, but if not, don't be discouraged. As others here will tell you, it is possible to get your health back, even if your doc has never heard of the diet connection or has little experience with MC. Many here have found their way back to health by developing their own treatment plan with info from this website. I'm sure I would still be sick if I hadn't found this website 12 years ago.
Your weakness and dizzy spells are likely due to dehydration/electrolye imbalance, which can be a major problem when having constant D. Have you checked out the forum with info on this? There are some helpful tips there. Are you taking any other meds/supplements? How about Imodium? How are you doing being GF and DF? How long now? Do you have any questions? If you are interested, you could post a sample of one or two day's menus, and the "experts" here could eyeball it and offer suggestions as to what foods may still be giving you difficulty. As you know, there is a ton of experience here.
Do you have ready access to a bathroom at work? And how will you be traveling - car, plane, etc.?
Feel free to whine and rant and rave all you want! We have all walked in your mocassins and have needed support at various times. I'm glad to hear you are getting angry........better to be angry and direct your emotions outward keep them inside, leading to depression.
OK now, repeat after me......better days are ahead, better days are ahead, better, etc.
Love,
Polly
You have really been through the wringer.
It can be so difficult dealing with this disease. But don't lose hope - I know you've seen here how people are able to get their lives back again. It WILL in all likelihood happen for you, but it does require a ton of patience (and thinking outside of the box). I hope things go well with your doc, but if not, don't be discouraged. As others here will tell you, it is possible to get your health back, even if your doc has never heard of the diet connection or has little experience with MC. Many here have found their way back to health by developing their own treatment plan with info from this website. I'm sure I would still be sick if I hadn't found this website 12 years ago.
Your weakness and dizzy spells are likely due to dehydration/electrolye imbalance, which can be a major problem when having constant D. Have you checked out the forum with info on this? There are some helpful tips there. Are you taking any other meds/supplements? How about Imodium? How are you doing being GF and DF? How long now? Do you have any questions? If you are interested, you could post a sample of one or two day's menus, and the "experts" here could eyeball it and offer suggestions as to what foods may still be giving you difficulty. As you know, there is a ton of experience here.
Do you have ready access to a bathroom at work? And how will you be traveling - car, plane, etc.?
Feel free to whine and rant and rave all you want! We have all walked in your mocassins and have needed support at various times. I'm glad to hear you are getting angry........better to be angry and direct your emotions outward keep them inside, leading to depression.
OK now, repeat after me......better days are ahead, better days are ahead, better, etc.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
First I am going to put a list of my daily meds and suppliments that I am taking:
Prednisone 60 mg a day for 2 weeks now. The first week I was taking 25mg
Hyoscyamine .125 mg 2 pills every 4 hours
Prilosec one in the morning and one at night
Zofran 4 mg 1 tablet every 6 hours as needed
Tramadol 50 mg (this is replacing the Lodine I have been on for about 15 years) Im allowed up to 800 mg a day as needed.
Vicodin 5-500 tablets 1-2 tablets three times a day
Lomotil 2.5 mg 1-2 tablets every 4-6 hours as needed
Multivitamin
Magnesium 500mg a day
Vitamin D 400 MG a day
Nadalol 20 mg 1 pill a day
Zyrtec 1 a day
Cholestyramine i scoop in 6 oz of fluid three times a day
Melatonin 5 mg 2 at bedtime
I force myself to eat a small amount of gluten free chex cereal with coconut milk every morning about a half cup, so I can take my prednisone.
I then snack on ruffles plain potato chips because I am craving salt so badly.
I drink gatorade during the day, or cranberry juice.
At night I eat a few bites of chicken grilled or mashed potatoes. To change it up a little I may scramble an egg.
Thats basically my diet. Im afraid to eat. Ive been doing the GF/DF diet for almost 2 weeks now.
I am not working right now because I was trying to keep up my usual pace and was passing out. Thats when the DRs put me on disability.
We will be driving to Texas , leaving May 24th.
Thank you so much Polly!! You made me smile today and I needed that
First I am going to put a list of my daily meds and suppliments that I am taking:
Prednisone 60 mg a day for 2 weeks now. The first week I was taking 25mg
Hyoscyamine .125 mg 2 pills every 4 hours
Prilosec one in the morning and one at night
Zofran 4 mg 1 tablet every 6 hours as needed
Tramadol 50 mg (this is replacing the Lodine I have been on for about 15 years) Im allowed up to 800 mg a day as needed.
Vicodin 5-500 tablets 1-2 tablets three times a day
Lomotil 2.5 mg 1-2 tablets every 4-6 hours as needed
Multivitamin
Magnesium 500mg a day
Vitamin D 400 MG a day
Nadalol 20 mg 1 pill a day
Zyrtec 1 a day
Cholestyramine i scoop in 6 oz of fluid three times a day
Melatonin 5 mg 2 at bedtime
I force myself to eat a small amount of gluten free chex cereal with coconut milk every morning about a half cup, so I can take my prednisone.
I then snack on ruffles plain potato chips because I am craving salt so badly.
I drink gatorade during the day, or cranberry juice.
At night I eat a few bites of chicken grilled or mashed potatoes. To change it up a little I may scramble an egg.
Thats basically my diet. Im afraid to eat. Ive been doing the GF/DF diet for almost 2 weeks now.
I am not working right now because I was trying to keep up my usual pace and was passing out. Thats when the DRs put me on disability.
We will be driving to Texas , leaving May 24th.
Thank you so much Polly!! You made me smile today and I needed that
I forgot to add that my primary told me to eat as much yogart as possible and also prescribed ensure. I have some generic ensure that says it is lactose/gluten free. I tried eating the yogart, but it was almost instant run to the bathroom. The ensure goes through me pretty quickly as well but stays a little longer. The Doctors theory is if it stays in me a little bit then I am getting some of the benefits.
Dawn,
I am sure one of the experts will weigh in, and Polly most certainly react to your meds list.
Polly told ME to drop all supplements for the time being, and to add them in one at a time when the D is under control even though I have checked that they are all gluten, dairy, rice, corn free.
Many of us are sensitive to the artificial colors used in many drugs and food products (one reason not to buy anything processed).
Yogurt is DAIRY! Those of us sensitive to dairy cannot eat it. We are not sensitive to lactose. We are sensitive to casein - the protein in dairy. So cut out yogurt.
And the ensure! Again, it contains dairy - the casein. You will not get better while you are eating these things.
Eggs are the next thing that might be causing you sensitivity. Many of us (me included) are sensitive to eggs. I would cut them out.
Gatorade and cranberry juice - do not drink them. Read the ingredient list. They have artificial colors galore, and all sorts of chemicals.
Somewhere on this site there is a recipe for an electrolyte enriched drink you can make.
Potato chips. Check them for unidentified ingredients. You might be sensitive to the oil in which they were cooked.
So the foods and drinks you are eating all day are causing you to have D. Same happened to me, though I was eating chicken and rice, both of which cause D for me.
You need to make a change in order to see what you CAN eat.
You should eat nothing but grilled chicken and rice for a week. And I mean nothing. You can eat it as many times a day as you want, but nothing else. If you still have D after a week of that one of them and/or your meds are causing it.
I am sensitive to rice AND chicken, so eating them for a couple of weeks didn't help me much.
What is the vicoden for? I have a serious back injury. I was on pain killers for years. I have kicked them because they affect the bowel. I am in pain so I do less, though I have been trying to keep up with some exercise, mostly gentle walking when I can, and/or in the pool.
Why prilosec? Do you have GERD? Search this site for alternatives to it. Those drugs are NOT good for you!
Polly will probably weigh in on both the food and the meds part. I can only tell you of my experience with this illness, which I am struggling to get under control.
We all understand you so well. Believe me I rant and moan a lot! And I have received nothing but support, for which I am so grateful!
I am sure one of the experts will weigh in, and Polly most certainly react to your meds list.
Polly told ME to drop all supplements for the time being, and to add them in one at a time when the D is under control even though I have checked that they are all gluten, dairy, rice, corn free.
Many of us are sensitive to the artificial colors used in many drugs and food products (one reason not to buy anything processed).
Yogurt is DAIRY! Those of us sensitive to dairy cannot eat it. We are not sensitive to lactose. We are sensitive to casein - the protein in dairy. So cut out yogurt.
And the ensure! Again, it contains dairy - the casein. You will not get better while you are eating these things.
Eggs are the next thing that might be causing you sensitivity. Many of us (me included) are sensitive to eggs. I would cut them out.
Gatorade and cranberry juice - do not drink them. Read the ingredient list. They have artificial colors galore, and all sorts of chemicals.
Somewhere on this site there is a recipe for an electrolyte enriched drink you can make.
Potato chips. Check them for unidentified ingredients. You might be sensitive to the oil in which they were cooked.
So the foods and drinks you are eating all day are causing you to have D. Same happened to me, though I was eating chicken and rice, both of which cause D for me.
You need to make a change in order to see what you CAN eat.
You should eat nothing but grilled chicken and rice for a week. And I mean nothing. You can eat it as many times a day as you want, but nothing else. If you still have D after a week of that one of them and/or your meds are causing it.
I am sensitive to rice AND chicken, so eating them for a couple of weeks didn't help me much.
What is the vicoden for? I have a serious back injury. I was on pain killers for years. I have kicked them because they affect the bowel. I am in pain so I do less, though I have been trying to keep up with some exercise, mostly gentle walking when I can, and/or in the pool.
Why prilosec? Do you have GERD? Search this site for alternatives to it. Those drugs are NOT good for you!
Polly will probably weigh in on both the food and the meds part. I can only tell you of my experience with this illness, which I am struggling to get under control.
We all understand you so well. Believe me I rant and moan a lot! And I have received nothing but support, for which I am so grateful!
Hi Dawn,
You are very very brave to post what you are eating and taking by the way. This little gator (I'm from the hometown of Gatorade) had a lot of problems drinking Gatorade last summer when my flare started and I was working in the 110 degree heat in the California desert demoing equipment for work. I think the football players that Gatorade was developed for in the 1960's have healthier guts than what we have during flare. Here is the link to perhaps a healthier rehydration drink that came from WebMD. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=992. Hopefully I cut and pasted this link correctly.
Also yogurt was problematic for me although I was in denial about it and probably needlessly suffered for 3 months as I went gluten free Oct 1 and totally dairy free (including yogurt) on Jan 1, 2012. Went I went yogurt free my bloating and gas was significantly improved. If you think you need a probiotic something like Culturelle might be safer although they were problematic for me during flare. I pretty much eliminated all supplements during flare as I was so sick and just stuck with cooked foods until I was well on the way to healing. Also agree with Lesley re: simplistic diet during flare. I did well with chicken rice and overcooked veggie...the same thing....for breakfast, lunch, dinner snacks....day after day after day...week after week....finally I got "softserve."
I'm not a medical person so I can't comment on the meds or specific supplements.
Wish you the best in your recovery. Brandy
You are very very brave to post what you are eating and taking by the way. This little gator (I'm from the hometown of Gatorade) had a lot of problems drinking Gatorade last summer when my flare started and I was working in the 110 degree heat in the California desert demoing equipment for work. I think the football players that Gatorade was developed for in the 1960's have healthier guts than what we have during flare. Here is the link to perhaps a healthier rehydration drink that came from WebMD. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=992. Hopefully I cut and pasted this link correctly.
Also yogurt was problematic for me although I was in denial about it and probably needlessly suffered for 3 months as I went gluten free Oct 1 and totally dairy free (including yogurt) on Jan 1, 2012. Went I went yogurt free my bloating and gas was significantly improved. If you think you need a probiotic something like Culturelle might be safer although they were problematic for me during flare. I pretty much eliminated all supplements during flare as I was so sick and just stuck with cooked foods until I was well on the way to healing. Also agree with Lesley re: simplistic diet during flare. I did well with chicken rice and overcooked veggie...the same thing....for breakfast, lunch, dinner snacks....day after day after day...week after week....finally I got "softserve."
I'm not a medical person so I can't comment on the meds or specific supplements.
Wish you the best in your recovery. Brandy
Thanks for all the info Lesley. I guess I need to just do it and stop everything.
I have a huge list of things to take with me to the new GI Dr today. Maybe I can educate him! LOL Im gonna give him the link to this website so he can see exactly all the good information from people who has this disease and are living with it and being normal. Thats all I want, to be normal again.
I have severe pain in my right lower side and right back. I am not able to sleep, so the doctor put me on Vicodin to help with that pain and to help me sleep. I don't take it as often as he suggests because well I just hate taking meds and I don't want to get "addicted" to them. The Prilosec is because the prednisone causes horrible heartburn and reflux. The prednisone is causing me all sorts of problems, Tex mentioned that I may have mast cell involvement. Thats one of the things I want to talk to this new dr about. I know Im prolly just going to be knocking my head against the wall today with the new dr but maybe I can open his eyes to all this and he will see there much more to this disease. He ought to be able to see that anyway I've been chronically sick for 4 months!
Thanks for the input Brandy I will def look into that link.
I will let you all know how things go with this new dr today. I just so badly want off this prednisone. Its affecting my physical health and my mental clarity, and emotional well being. Im in a fog.
Thanks again for letting me rant. It helps a lot!!
I am so HAPPY I found you all!
Dawn
I have a huge list of things to take with me to the new GI Dr today. Maybe I can educate him! LOL Im gonna give him the link to this website so he can see exactly all the good information from people who has this disease and are living with it and being normal. Thats all I want, to be normal again.
I have severe pain in my right lower side and right back. I am not able to sleep, so the doctor put me on Vicodin to help with that pain and to help me sleep. I don't take it as often as he suggests because well I just hate taking meds and I don't want to get "addicted" to them. The Prilosec is because the prednisone causes horrible heartburn and reflux. The prednisone is causing me all sorts of problems, Tex mentioned that I may have mast cell involvement. Thats one of the things I want to talk to this new dr about. I know Im prolly just going to be knocking my head against the wall today with the new dr but maybe I can open his eyes to all this and he will see there much more to this disease. He ought to be able to see that anyway I've been chronically sick for 4 months!
Thanks for the input Brandy I will def look into that link.
I will let you all know how things go with this new dr today. I just so badly want off this prednisone. Its affecting my physical health and my mental clarity, and emotional well being. Im in a fog.
Thanks again for letting me rant. It helps a lot!!
I am so HAPPY I found you all!
Dawn
Hi Dawn,
The Prilosec has a lot of contraindications for someone with MC, and I'm surprised that your doctor would allow you to take it, let alone recommend it. Besides the fact that research shows that it actually causes the symptoms that it is designed to treat, (GERD), in healthy volunteers, Prilosec, (like all PPIs), is a leading cause of intestinal bacterial infections, (including C. diff), osteoporosis, (including an increased risk of fracture), and it is known to cause microscopic colitis. Here's a reference on that, in case you doubt what I'm saying:
Cholestyramine is a bile acid sequestrant, and it's notorious for causing abdominal pain and cramps.
You are taking so many drugs, that the odds are extremely high that one or more of them are causing most of your symptoms. It's easy to fall into that trap, when your doctor doesn't know what he or she is doing. Frankly, I doubt that the diet changes will be able to provide enough help, to overcome the negative effects of several of those drugs. Drug-induced problems tend to trump any benefits of diet changes.
Hopefully your new doctor will actually know how to treat disease, rather than just being a pill-pusher. I wish you the best of luck with the appointment, today.
Tex
The Prilosec has a lot of contraindications for someone with MC, and I'm surprised that your doctor would allow you to take it, let alone recommend it. Besides the fact that research shows that it actually causes the symptoms that it is designed to treat, (GERD), in healthy volunteers, Prilosec, (like all PPIs), is a leading cause of intestinal bacterial infections, (including C. diff), osteoporosis, (including an increased risk of fracture), and it is known to cause microscopic colitis. Here's a reference on that, in case you doubt what I'm saying:
http://www.ncbi.nlm.nih.gov/pubmed/19142168A case series of 4 patients is described in which subjects developed classic symptoms of lymphocytic-collagenous colitis with typical mucosal histopathology during treatment with omeprazole/esomeprazole. Symptoms promptly stopped and mucosal biopsies returned to normal with drug withdrawal. Disease quickly recurred in 2 patients who were reexposed to the drugs, one with biopsy documented recurrent collagenous colitis.
Cholestyramine is a bile acid sequestrant, and it's notorious for causing abdominal pain and cramps.
You are taking so many drugs, that the odds are extremely high that one or more of them are causing most of your symptoms. It's easy to fall into that trap, when your doctor doesn't know what he or she is doing. Frankly, I doubt that the diet changes will be able to provide enough help, to overcome the negative effects of several of those drugs. Drug-induced problems tend to trump any benefits of diet changes.
Hopefully your new doctor will actually know how to treat disease, rather than just being a pill-pusher. I wish you the best of luck with the appointment, today.
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.
Good morning, Dawn!
I got a kick out of Lesley mentioning that I and other "experts" would be dropping in to comment. And then she proceeded make just about every suggestion that I would have made! It's amazing how quickly folks become "experts" here - and Lesley is still a newbie. Well done, Lesley! And I also agree with Brandy about the Gatorade. Aside from the colorings, flaovrings, etc., which can be problematic for MCers, there is just too much sugar. Dr. Fine (of enterolab fame) has always cautioned against eating sugar - he says it feeds the "bad" bacteria in the gut and worsens MC. Over the years I have found that I do much better when eating no sugar at all. And Tex is dead-on about the Prilosec and cholestyramine.
Good luck today with the doc. Hope you are not too disappointed and that you can begin tapering the pred. Let us know the outcome.
And yes, I would strongly urge eliminating as many meds/supplements as possible for now and eating an extremely limited diet.
To be continued...........
Love,
Polly
I got a kick out of Lesley mentioning that I and other "experts" would be dropping in to comment. And then she proceeded make just about every suggestion that I would have made! It's amazing how quickly folks become "experts" here - and Lesley is still a newbie. Well done, Lesley! And I also agree with Brandy about the Gatorade. Aside from the colorings, flaovrings, etc., which can be problematic for MCers, there is just too much sugar. Dr. Fine (of enterolab fame) has always cautioned against eating sugar - he says it feeds the "bad" bacteria in the gut and worsens MC. Over the years I have found that I do much better when eating no sugar at all. And Tex is dead-on about the Prilosec and cholestyramine.
Good luck today with the doc. Hope you are not too disappointed and that you can begin tapering the pred. Let us know the outcome.
And yes, I would strongly urge eliminating as many meds/supplements as possible for now and eating an extremely limited diet.
To be continued...........
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly wrote:I got a kick out of Lesley mentioning that I and other "experts" would be dropping in to comment. And then she proceeded make just about every suggestion that I would have made!
Those were exactly my thoughts, too. And I agree with you that it's amazing how people come here looking for the right answers to tough questions, and in a few shakes of a lamb's tail, they're providing the answers. 
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.
potato chips
Hi Dawn. I'm pretty new to this forum, but have learned so much. I am on Entocort and it has worked wonders, but before I started taking it, I was eating a lot of potato and potato chips.... and I started to feel even worse! There are some of us who react to a group of foods called "nightshades". The main culprits in this group are potatoes, tomatoes ( and any product made form them), eggplant, and peppers. Maybe you should stop potatoes for now and maybe try them again when you are feeling better. You may want to do exactly what Lesley and many are saying and only do chicken and rice .... maybe some cooked green beans. For me, I made big pots of chicken soup with carrots and added rice. Applesauce ( unsweetened) seemed to be good for me also.
Let us know how the doctor's appt. goes
Leah
Let us know how the doctor's appt. goes
Leah
*preening*. I'm slow, but I learn in the end.
Most people here can do chicken and rice. As usual. I have to be "different" and more extreme, so I don't tolerate either. I DO tolerate white potatoes, so that's what I eat.
I make stock from beef, buffalo and lamb bones, and mash potatoes with it. Or I do a stew using lamb or beef mostly.
I also tolerate tilapia and other white fish. so I eat those.
I tolerate overcooked spinach and carrots, and peeled, cooked apples.
I make ice cream from canned coconut milk, which is delicious.
And that's about it!
And this is after a year of trying.
As for GERD.
I went cold turkey on PPIs. Not easy, but I did it. I have been taking famotidine, (ranitidine) which does help, and is an H2 histamine, so combined with zyrtec (H1) I am fighting mast cells.
I also kicked prednisone which was HELL!
And Norco (which is much like vicoden), so my back and shoulder hurt badly all the time. But narcotics have awful effects on the bowel so I knew I had to stop. BTW - vicoden can mess up your head. Make you fatigued and foggy. Now it could all be from the MC, but I'll bet a lot is from the vicoden.
In the past few weeks my GERD and pain in my esophagus has been SO bad that I have taken a nexium (Indian, so not true nexium) here and there. I am hoping that if the hernia is repaired the GERD will decrease, and I can concentrate on the nether end.
Yesterday I tasted what I thought was a potato chip cooked in coconut oil being demo'd at the local Ralph's. The woman had put the chips in a bowl recently holding corn chips (which I did not know), and there must have been one left. 2 hours later - explosive D! Pain, bloating (I permanently look pregnant!) etc. I am still in an acute flare. I did NOT take an imodium, because last time I did I had such C when I did I was trying to avoid it.
Dawn - this is a difficult disease to get a handle on. However, look at Polly and Tex, Zizzle and Brandy and many others here. They are in remission, or getting there. That means we can too.
Most people here can do chicken and rice. As usual. I have to be "different" and more extreme, so I don't tolerate either. I DO tolerate white potatoes, so that's what I eat.
I make stock from beef, buffalo and lamb bones, and mash potatoes with it. Or I do a stew using lamb or beef mostly.
I also tolerate tilapia and other white fish. so I eat those.
I tolerate overcooked spinach and carrots, and peeled, cooked apples.
I make ice cream from canned coconut milk, which is delicious.
And that's about it!
And this is after a year of trying.
As for GERD.
I went cold turkey on PPIs. Not easy, but I did it. I have been taking famotidine, (ranitidine) which does help, and is an H2 histamine, so combined with zyrtec (H1) I am fighting mast cells.
I also kicked prednisone which was HELL!
And Norco (which is much like vicoden), so my back and shoulder hurt badly all the time. But narcotics have awful effects on the bowel so I knew I had to stop. BTW - vicoden can mess up your head. Make you fatigued and foggy. Now it could all be from the MC, but I'll bet a lot is from the vicoden.
In the past few weeks my GERD and pain in my esophagus has been SO bad that I have taken a nexium (Indian, so not true nexium) here and there. I am hoping that if the hernia is repaired the GERD will decrease, and I can concentrate on the nether end.
Yesterday I tasted what I thought was a potato chip cooked in coconut oil being demo'd at the local Ralph's. The woman had put the chips in a bowl recently holding corn chips (which I did not know), and there must have been one left. 2 hours later - explosive D! Pain, bloating (I permanently look pregnant!) etc. I am still in an acute flare. I did NOT take an imodium, because last time I did I had such C when I did I was trying to avoid it.
Dawn - this is a difficult disease to get a handle on. However, look at Polly and Tex, Zizzle and Brandy and many others here. They are in remission, or getting there. That means we can too.
So this doctor listened to me and actually agreed with a lot of what I had to say. He stopped all meds except the prednisone because that needs to be weaned off of. He doesn't want to start anything new till he does another colonoscopy, which is set for thursday and a full blood work up. He says the meds most likely that these other doctors have put me on have aggravated the disease and has most likely caused more damage. He wants to go in and see what everything looks like since all the meds and go from there. He agrees that just masking with meds is not a solution. He was somewhat hesitant on the diet change but says it cant hurt, so I am going to keep that up. Im on all liquid diet tomorrow.
Are there certain questions I should be asking or comments I should be suggesting. I had my notebook but I feel like I need help as to what to say. I told him I was beyond frustrated and angry b/c its been 4 months now.
After the liquid diet I am going to try the chicken and rice diet. I love both so shouldn't be too hard, hopefully. Its spring and thats usually the time I like to eat the most. LOL Fresh fish and grilled chicken and LOVE my fresh veggies from the garden. In the summer I live off of my garden. I hope Im well enough to enjoy my garden this year.
Again thank you all for being such a great support system. Im not sure that I wouldn't have had a breakdown by now if I hadn't found you!!
Hugs,
Dawn
Are there certain questions I should be asking or comments I should be suggesting. I had my notebook but I feel like I need help as to what to say. I told him I was beyond frustrated and angry b/c its been 4 months now.
After the liquid diet I am going to try the chicken and rice diet. I love both so shouldn't be too hard, hopefully. Its spring and thats usually the time I like to eat the most. LOL Fresh fish and grilled chicken and LOVE my fresh veggies from the garden. In the summer I live off of my garden. I hope Im well enough to enjoy my garden this year.
Again thank you all for being such a great support system. Im not sure that I wouldn't have had a breakdown by now if I hadn't found you!!
Hugs,
Dawn