Hi all,
As most of you know I have been taking Prednisone 40 mg/day for almost 4 weeks now. I still have to take Lomotil 2 a day, but probably should be 3. Last June I was diagnosed with fructose intolerance so no fruit or other sugar. Period. I have been taking VSL #3 but stopped recently because it was determined to have dairy in it. I decided a few days ago I needed to try to add some soluble fiber in my diet so I tried bananas. It seems to help. Yeah!!!!! (And I am not having the gurgling I had before when I tried fruit.) But only to the point of reducing the Lomotil by one.
Well, today was the day to call my doctor and report. Of course I get the assistant's voicemail, she tells the PA, the PA talks to the doctor and he tells her what to tell me and then she calls. They want me to keep taking the 40 mg of Pred for 4 more weeks AND take Azathioprine 50mg/day. That is the generic for Imuran. I will have a blood test in 2 weeks. Then see the doctor 2 weeks after that. I am so disgusted with this disease. I guess I am lucky that so far I haven't gained weight. I could use some. My face has not gotten puffy. I think it has a little but my husband says he can't tell it. I make all my own food. I am GF, DF, SF, and mostly fructose free. I am so discouraged. I should be happy there are more drugs to combat this. Ever know of someone like me?
Pat
Update on my meds and diet.
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Pat,
Since you're already taking Prednisone, I don't understand why your doctor is asking you to take another powerful immunosuppressant, (the Azathioprine). It's normally prescribed to minimize the likelihood of organ rejection after a kidney transplant, or to treat RA, or UC. With the flu going around here in Texas now, in several versions for which the vaccine is ineffective, that makes me kind of concerned about your risks of catching a virus for which you will have very little resistance, and a very tough time recovering from, especially since your work as a dental hygienist sort of puts you at the mercy of any patient who might have a virus. Of course, your immune system may already be so suppressed by the Prednisone by now, that any additional suppression may be a moot point, but I suspect that it will add additional level of risk exposure.
That's interesting about the banana. Banana's contain the highest percentage of sugar, (by weight), of any fruit, (17%), of which approximately one-fourth is fructose.
Concerning Prednisone, I could be wrong, but I get the impression that patients who need to gain weight, don't; and those who don't need to gain weight, do. C'est la vie, or so it seems.
You've certainly earned the right to be enjoying remission by now, but for some reason, it continues to elude you. Regarding your question, "Ever know of someone like me?" - well , yes, and no. I've seen a lot of MCers who were in a similar situation of being probably one short step away from remission, and feeling discouraged and almost hopeless, but on the other hand, as we all know, we are all different, and every case is different, (at least the tough cases are).
There is almost surely something in your diet, that is the remaining key to remission, (unless you're taking any meds that I'm not aware of). Perhaps if you posted a list of everything, (no matter how insignificant something might seem), that you are ingesting each day, for a few days, someone might spot a suspicious item. That has worked a few times in the past.
I know it's frustrating and discouraging, (we've all felt that way, when we were at a similar point in our recovery), but you're probably closer to success than you realize. You just have to find that final piece of the puzzle.
Tex
Since you're already taking Prednisone, I don't understand why your doctor is asking you to take another powerful immunosuppressant, (the Azathioprine). It's normally prescribed to minimize the likelihood of organ rejection after a kidney transplant, or to treat RA, or UC. With the flu going around here in Texas now, in several versions for which the vaccine is ineffective, that makes me kind of concerned about your risks of catching a virus for which you will have very little resistance, and a very tough time recovering from, especially since your work as a dental hygienist sort of puts you at the mercy of any patient who might have a virus. Of course, your immune system may already be so suppressed by the Prednisone by now, that any additional suppression may be a moot point, but I suspect that it will add additional level of risk exposure.
That's interesting about the banana. Banana's contain the highest percentage of sugar, (by weight), of any fruit, (17%), of which approximately one-fourth is fructose.
Concerning Prednisone, I could be wrong, but I get the impression that patients who need to gain weight, don't; and those who don't need to gain weight, do. C'est la vie, or so it seems.
You've certainly earned the right to be enjoying remission by now, but for some reason, it continues to elude you. Regarding your question, "Ever know of someone like me?" - well , yes, and no. I've seen a lot of MCers who were in a similar situation of being probably one short step away from remission, and feeling discouraged and almost hopeless, but on the other hand, as we all know, we are all different, and every case is different, (at least the tough cases are).
There is almost surely something in your diet, that is the remaining key to remission, (unless you're taking any meds that I'm not aware of). Perhaps if you posted a list of everything, (no matter how insignificant something might seem), that you are ingesting each day, for a few days, someone might spot a suspicious item. That has worked a few times in the past.
I know it's frustrating and discouraging, (we've all felt that way, when we were at a similar point in our recovery), but you're probably closer to success than you realize. You just have to find that final piece of the puzzle.
Tex
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MaggieRedwings
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Morning Pat,
Tex has given your great information and really it is probably one piece of the puzzle that is missing. It is very strange how this disease works on the body and the way it seems to be different from person to person. I, for one, have taken forever to get to remission but I seem to be totally different than most who achieved it. Also, being a vegan for over 30 years caused me to ingest an extreme amount of grains compared to the normal person and therefore an abnormal time for my gut to heal. IMHO
Just give it time and I am sure you will win out.
Love, Maggie
Tex has given your great information and really it is probably one piece of the puzzle that is missing. It is very strange how this disease works on the body and the way it seems to be different from person to person. I, for one, have taken forever to get to remission but I seem to be totally different than most who achieved it. Also, being a vegan for over 30 years caused me to ingest an extreme amount of grains compared to the normal person and therefore an abnormal time for my gut to heal. IMHO
Just give it time and I am sure you will win out.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hi Pat,
I agree with Tex in that i am surprised that your doc also has you on Imuran (or the generic for it) as well as the prednisone. I understand the frustration you are going through as i am no where near a remission either. Every day is such a struggle and you just want it to get over with and move on with your normal life again! Sometimes it seems like that will never happen.
I am glad to hear that you are not having any side effects from the prednisone though. Sometimes the horror stories you hear about it are just as discouraging as the disease itself.
Hang in there!!
I agree with Tex in that i am surprised that your doc also has you on Imuran (or the generic for it) as well as the prednisone. I understand the frustration you are going through as i am no where near a remission either. Every day is such a struggle and you just want it to get over with and move on with your normal life again! Sometimes it seems like that will never happen.
I am glad to hear that you are not having any side effects from the prednisone though. Sometimes the horror stories you hear about it are just as discouraging as the disease itself.
Hang in there!!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi Pat,
Just wanted to voice my support too. I know how frustrated you are. I don't know how I lasted the 9 months I tried diet alone before seeing my first normal B.M. Probably because of the support I received here.
The only other person I recall who was on Imuran was Sally, the lady who originally started this board. She was also on large doses of prednisone for a long time and definitely went through withdrawal as it was reduced. You might want to try emailing her to share experiences. If her email is not listed on this site, let me know and I'll send it to you. I'm sure she wouldn't mind. I'm pretty sure Sally is on something like Entocort or asacol now - she is one who does not use diet.
Imuran really is a "big gun". I know you are at your wit's end, but are you SURE you have tried everything else first? I like Tex' suggestion that maybe you could list everything you eat over several days and we could put our heads together to see if anything occurs to us. For example, I am also intolerant to eggs, yeast, corn, tomatoes, chocolate, carrageenen, etc. Are you taking any vitamins or supplements? Any prescription meds that might contain gluten or dairy?
Maybe it might help to go on a totally non-immunogenic diet with just a few "safe" items for a few weeks to see what happens. Then you could add foods back slowly, one at a time. A diet like plain roasted chicken, turkey, or fish, NO grains at all (not even rice), cooked veggies like carrots, string beans, sweet potatoes, butternut squash. No legumes like peanuts or dried beans (the lectins in them promote leaky gut). No nightshades like tomatoes, peppers, or eggplant. For high-cal snacks...... guacamole, olives, almond butter, etc. Also, sometimes the best snacks are more meat/fowl, fish. I always cook extra to have for snacks. One of our members here, who has many intolerances (Karen) once said "Always carry a pork chop in your purse"! LOL!
Hang in there - better times are ahead.
Love,
Polly
Just wanted to voice my support too. I know how frustrated you are. I don't know how I lasted the 9 months I tried diet alone before seeing my first normal B.M. Probably because of the support I received here.
The only other person I recall who was on Imuran was Sally, the lady who originally started this board. She was also on large doses of prednisone for a long time and definitely went through withdrawal as it was reduced. You might want to try emailing her to share experiences. If her email is not listed on this site, let me know and I'll send it to you. I'm sure she wouldn't mind. I'm pretty sure Sally is on something like Entocort or asacol now - she is one who does not use diet.
Imuran really is a "big gun". I know you are at your wit's end, but are you SURE you have tried everything else first? I like Tex' suggestion that maybe you could list everything you eat over several days and we could put our heads together to see if anything occurs to us. For example, I am also intolerant to eggs, yeast, corn, tomatoes, chocolate, carrageenen, etc. Are you taking any vitamins or supplements? Any prescription meds that might contain gluten or dairy?
Maybe it might help to go on a totally non-immunogenic diet with just a few "safe" items for a few weeks to see what happens. Then you could add foods back slowly, one at a time. A diet like plain roasted chicken, turkey, or fish, NO grains at all (not even rice), cooked veggies like carrots, string beans, sweet potatoes, butternut squash. No legumes like peanuts or dried beans (the lectins in them promote leaky gut). No nightshades like tomatoes, peppers, or eggplant. For high-cal snacks...... guacamole, olives, almond butter, etc. Also, sometimes the best snacks are more meat/fowl, fish. I always cook extra to have for snacks. One of our members here, who has many intolerances (Karen) once said "Always carry a pork chop in your purse"! LOL!
Hang in there - better times are ahead.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Pat,
Those are all great suggestions that Polly posted, and I agree that Sally would be a great source of information on those meds, and I'm almost positive that she would be more than happy to share information, if you e-mail her, (especially if you mention that Polly suggested that you write).
I believe that the address that is listed on this board for Sally is current. You can access her e-mail address by clicking on the "Memberlist" link at the top of the page, and scrolling down to her account information. She is number 40 on the list.
In case anyone is wondering why we don't just post her e-mail address here - the reason is that we don't want to reveal her address to all the spambots in the world, that continuously scan discussion boards and websites, searching for e-mail addresses to "grab", to sell to spammers. Non-members cannot "see" the e-mail address, PM address, profile, nor other vital statistics of members of this board, nor can new members "see" that information, until they "pass muster", by posting a certain number of messages to the board, at which point the system will automatically make that information visible to them. Obviously, if a "spammer", or other unqualified member were to successfully register, and enter posts, their account would be either set to inactive, or deleted completely, by a moderator, or an admin, before they would be able to access member account information. Just a FYI.
Tex
Those are all great suggestions that Polly posted, and I agree that Sally would be a great source of information on those meds, and I'm almost positive that she would be more than happy to share information, if you e-mail her, (especially if you mention that Polly suggested that you write).
I believe that the address that is listed on this board for Sally is current. You can access her e-mail address by clicking on the "Memberlist" link at the top of the page, and scrolling down to her account information. She is number 40 on the list.
In case anyone is wondering why we don't just post her e-mail address here - the reason is that we don't want to reveal her address to all the spambots in the world, that continuously scan discussion boards and websites, searching for e-mail addresses to "grab", to sell to spammers. Non-members cannot "see" the e-mail address, PM address, profile, nor other vital statistics of members of this board, nor can new members "see" that information, until they "pass muster", by posting a certain number of messages to the board, at which point the system will automatically make that information visible to them. Obviously, if a "spammer", or other unqualified member were to successfully register, and enter posts, their account would be either set to inactive, or deleted completely, by a moderator, or an admin, before they would be able to access member account information. Just a FYI.
Tex
Hi Pat
Sorry to hear you are still having problems trying to get into remission, although I am no where near remission myself. As Tex and a few others have stated I am really shocked to hear that you are being kept on the same dose of pred and at the same time they are introducing AZA although 50mgs is a small dose! I would seriously want to see my GI in clinic to discuss the situation.
Also I quote Tex
'Concerning Prednisone, I could be wrong, but I get the impression that patients who need to gain weight, don't; and those who don't need to gain weight, do. C'est la vie, or so it seems.'
This does very much seem to be the case, I have noticed this talking with people on the Crohns and UC support forums.
Thankfully as Erin has posted out it is good you are not getting the horrid side effects from the preds as well to cope with.
Sorry to hear you are still having problems trying to get into remission, although I am no where near remission myself. As Tex and a few others have stated I am really shocked to hear that you are being kept on the same dose of pred and at the same time they are introducing AZA although 50mgs is a small dose! I would seriously want to see my GI in clinic to discuss the situation.
Also I quote Tex
'Concerning Prednisone, I could be wrong, but I get the impression that patients who need to gain weight, don't; and those who don't need to gain weight, do. C'est la vie, or so it seems.'
This does very much seem to be the case, I have noticed this talking with people on the Crohns and UC support forums.
Thankfully as Erin has posted out it is good you are not getting the horrid side effects from the preds as well to cope with.
Thanks everyone for your suggestions. I knew you would know "something" I could do. Talking to someone else who has been down this road will be helpful.
I think my doctor intended to save the Imuran for after the pred but since the pred wasn't working like he wanted then it had to go on top of the Pred. Took my first dose this A.M. and so far no BM. So maybe, just maybe it will help.
I am pretty much on the diet Polly suggested except for the rice and the high fructose veggies, string beans and sweet potatoes are on the no-no list for fructose free. Actually bananas are supposedly on the ok list for adding back in after fructose free. I really do want to give up the rice, but I struggle so to keep my weight up. I eat a lot of calories but it has been going right through me.
I do take a multivit that specifically says dairy, gluten, soy, Yeast free. It is Nature's Plus High Potency Ultra One Daily Caps. I also take Citracal plus D. Also free of dairy and gluten, etc. Lomotil is the only other thing.
Thanks for your help. I really, really do appreciate it!
Pat
I think my doctor intended to save the Imuran for after the pred but since the pred wasn't working like he wanted then it had to go on top of the Pred. Took my first dose this A.M. and so far no BM. So maybe, just maybe it will help.
I am pretty much on the diet Polly suggested except for the rice and the high fructose veggies, string beans and sweet potatoes are on the no-no list for fructose free. Actually bananas are supposedly on the ok list for adding back in after fructose free. I really do want to give up the rice, but I struggle so to keep my weight up. I eat a lot of calories but it has been going right through me.
I do take a multivit that specifically says dairy, gluten, soy, Yeast free. It is Nature's Plus High Potency Ultra One Daily Caps. I also take Citracal plus D. Also free of dairy and gluten, etc. Lomotil is the only other thing.
Thanks for your help. I really, really do appreciate it!
Pat
I'm so sorry that you're not having success. Back in November, I think we were all so excited to think that eliminating potatoes was your solution, but apparently it wasn't. You've been struggling with this for longer than most people. I'm concerned about the Prednisone combined with the Imuran, too. I know that these are last resorts for you since you've tried almost everything else.
I don't have any advice, but I wanted you to know that I'm concerned and am hoping the elusive remission you're seeking is not far off.
I don't have any advice, but I wanted you to know that I'm concerned and am hoping the elusive remission you're seeking is not far off.
You never know what you can do until you have to do it.
Gloria,
You know, it seems like each time I "try" something new I get a placebo effect for a little while or maybe it just coincides with "a good day". I was eating a lot of potatoes last fall and lately I have been eating them only occasionally. Now I am trying to abide by the diet Dr. Fine recommends which is what Polly talks about. Black tea is listed on the high oxalate diet so that may have been the problem with tea. I may starve but I am going to try to be very strict. I, too, am concerned with so much medication. But diet, so far, Entocort, Cholestyramine, pepto bismol, Neomycin, Lialda, and there were probably others I can't think of right now, did not work. I have even been trying not to take Ambien for sleep. I started relistening to my old IBS hypnotherapy CD's. They never helped the D, but they helped me sleep. Very relaxing. Thanks for supporting me. All of you.
Pat
You know, it seems like each time I "try" something new I get a placebo effect for a little while or maybe it just coincides with "a good day". I was eating a lot of potatoes last fall and lately I have been eating them only occasionally. Now I am trying to abide by the diet Dr. Fine recommends which is what Polly talks about. Black tea is listed on the high oxalate diet so that may have been the problem with tea. I may starve but I am going to try to be very strict. I, too, am concerned with so much medication. But diet, so far, Entocort, Cholestyramine, pepto bismol, Neomycin, Lialda, and there were probably others I can't think of right now, did not work. I have even been trying not to take Ambien for sleep. I started relistening to my old IBS hypnotherapy CD's. They never helped the D, but they helped me sleep. Very relaxing. Thanks for supporting me. All of you.
Pat
Hi Joan,
Yes, writing "@" as "at" will prevent spambots from reading an e-mail address, but it would be easily readable by humans, and remember that anyone, anywhere in the world, can read these forums. I don't mind posting my own e-mail address in an "emergency", but I wouldn't want to be responsible for posting someone else's address, since you never know who might be reading this.
After they post a certain minimum number of posts, and meet other requirements, any registered member will automatically be allowed to read the contact information listed for public viewing in any other member's profile. Other than that, though, no one else in the world can see or access our e-mail address, PM address, profile, msm address, skype address, etc. Members can get that information from the "Memberlist", "Profile", any post by that member, or anywhere else on the board where a member's username is displayed as a live link.
Try reading the board without logging in - you shouldn't be able to "see", or otherwise access any of that information, if all the safeguards that I've built into this board are working correctly. If you're logged in, though, you should be able to "see" the contact information for every member. We take privacy seriously, because it's a serious matter.
Tex
Yes, writing "@" as "at" will prevent spambots from reading an e-mail address, but it would be easily readable by humans, and remember that anyone, anywhere in the world, can read these forums. I don't mind posting my own e-mail address in an "emergency", but I wouldn't want to be responsible for posting someone else's address, since you never know who might be reading this.
After they post a certain minimum number of posts, and meet other requirements, any registered member will automatically be allowed to read the contact information listed for public viewing in any other member's profile. Other than that, though, no one else in the world can see or access our e-mail address, PM address, profile, msm address, skype address, etc. Members can get that information from the "Memberlist", "Profile", any post by that member, or anywhere else on the board where a member's username is displayed as a live link.
Try reading the board without logging in - you shouldn't be able to "see", or otherwise access any of that information, if all the safeguards that I've built into this board are working correctly. If you're logged in, though, you should be able to "see" the contact information for every member. We take privacy seriously, because it's a serious matter.
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.