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Well good people, I just can't seem to get this relapse under control and am feeling a little frustrated. Because of all my intolerances I am literally eating very few items. I am even taking Imodium with Entocort and it is not regulating my bowels. Some days I have nothing and the next day loose as a goose! I've tried different combinations 2 Entocort/1 Imodium, 1 Entocort up to 2 Imodium etc. I also have noticed that it will come out burning loose or D. Also have a lot more pain in the colon.
Just a couple of months ago, I was doing so well and was able to get off of everything. I have revisited my food log and am not really doing anything different. I was taking Zyrtec for months thinking it would help the Mast Cell issue if I indeed have a problem but stopped that a few weeks ago. Will probably go back on that and see if it helps.
I can only surmise that I am one of those people if I eat too much of something on a regular basis, that my system rebels. I switched to Walnuts on my hot cereal in the morning just to add calories, but will cut that out and see if it makes a difference.
This disease sure does try your patience. In the end, you just have to keep trying.
Thanks for listening, I just needed to get it off my chest. Ginny
Having a tough time
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Having a tough time
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Ginny,
I'm so sorry to hear about your relapse. MC has this way of convincing you you're making progress, only to turn around and slap you in the face. Then we spend time beating ourselves up over what we might have eaten to make things worse. But there isn't always an answer. It's not all our doing. MC has a mind of its own sometimes. There, I've made MC into a person -
- a very mean and nasty one!
I'm so sorry to hear about your relapse. MC has this way of convincing you you're making progress, only to turn around and slap you in the face. Then we spend time beating ourselves up over what we might have eaten to make things worse. But there isn't always an answer. It's not all our doing. MC has a mind of its own sometimes. There, I've made MC into a person -
- a very mean and nasty one!-
Joefnh
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hi Ginny I am sorry you are having a rough time with your MC. You mentioned walnuts on your cereal. I know even with me taking Imuran which has suppressed the symptoms quite a bit, too much fiber can aggravate my system big time. I know at least for me nuts are not tolerated at all, but peanut butter is. I am not sure why but I suspect its that nuts in the whole form are hard to digest.
--Joe
--Joe
Joe
Ginny,
I'm sorry that remission is being so elusive. I'm beginning to wonder if stress might be a dominant part of the problem.
"Battery acid D" is a trademark of reactions to dairy products. Is there any chance that you might somehow be getting traces of a dairy ingredient every day, or every other day? Have you checked and double-checked the Imodium Label, for example?
IMO, we're either overlooking something on a regular basis, or stress is the culprit.
I wish I knew the answer.
Love,
Tex
I'm sorry that remission is being so elusive. I'm beginning to wonder if stress might be a dominant part of the problem.
"Battery acid D" is a trademark of reactions to dairy products. Is there any chance that you might somehow be getting traces of a dairy ingredient every day, or every other day? Have you checked and double-checked the Imodium Label, for example?
IMO, we're either overlooking something on a regular basis, or stress is the culprit.
I wish I knew the answer.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.
Ginny,
I'm with Tex on checking the Immodium - mine had a dairy type flavor to it, never did check the label - I stopped taking it - it would help with the first dose only, then it made things worse! Also, nuts are harder to digest than the nut butters, maybe you can toss the walnuts in a food processer to make your own nut butter -- never tried, but heard about it.
I hear you on the frustration - I am feeling that way too - ate the same basic meals and snacks Mon and Tues - Tues afternoon - explosive D - ugh! I'm thinking it was too many eggs and I may have to give those up! Just when I thought I was moving forward a little bit - BAM - pulled back again. So, plain chicken and chicken soup - plain of course are my best friends for now - arghhh - I'm beginning to hate chicken!
Good luck! Take some "me" time - relax, warm bath - try some epson salts in the bath to help your body detox... take care of yourself. You can beat this monster! Theresa in ME
I'm with Tex on checking the Immodium - mine had a dairy type flavor to it, never did check the label - I stopped taking it - it would help with the first dose only, then it made things worse! Also, nuts are harder to digest than the nut butters, maybe you can toss the walnuts in a food processer to make your own nut butter -- never tried, but heard about it.
I hear you on the frustration - I am feeling that way too - ate the same basic meals and snacks Mon and Tues - Tues afternoon - explosive D - ugh! I'm thinking it was too many eggs and I may have to give those up! Just when I thought I was moving forward a little bit - BAM - pulled back again. So, plain chicken and chicken soup - plain of course are my best friends for now - arghhh - I'm beginning to hate chicken!
Good luck! Take some "me" time - relax, warm bath - try some epson salts in the bath to help your body detox... take care of yourself. You can beat this monster! Theresa in ME
Catsrule, believe me you will become a strong woman as well. Some of us that have suffered a long time just become tough because we have no other choice. You just keep fighting it. I am really sorry for you, because I can remember well when I first got this disease (2 yrs ago) I could barely go from my bed to the couch! Please no that we understand. I put this whole group into my prayers every day. Try to take one day at a time. Hard to do I know when you feel so bad. Try to focus on things you like to do, take time strictly for yourself.
Tex, most likely you are right about the stress. I have 8 1/2 more months to go before I can retire and I recently hit the wall with this job. It will be tough going, but I will make it. I am so very careful about what I take; the Imodium is the original kind in a caplet and I was told it did not contain lactose. If anyone knows differently, please chime in. I'm going back to 2 Entocort a day and I have worked out my meals for a 3 day cycle. I'm going to eliminate all nuts, keep my fruit to only bananas and applesauce. I have more selection when it comes to veggies, but will keep the fiber down to very little. I will eat a lot of rice in one form or another and of course meat. My main concern is not losing any more weight; hence the reason I've been taking the Imodium as well as the Entocort. I don't think I am going to be in any hurry of getting off of Entocort since I have not had much luck with staying in remission. The burning does not happen often, but when it has, it is such a surprise. I've also had a lot of gas pain recently which implies stress to me. I'm going to order that new book that Polly just put in a thread; The Relaxation Response.
Theresa, Joe and Zizzle, thanks for listening to me and I feel your support!
Theresa, this is a disease of steps.............forward and backwards.
Tex, most likely you are right about the stress. I have 8 1/2 more months to go before I can retire and I recently hit the wall with this job. It will be tough going, but I will make it. I am so very careful about what I take; the Imodium is the original kind in a caplet and I was told it did not contain lactose. If anyone knows differently, please chime in. I'm going back to 2 Entocort a day and I have worked out my meals for a 3 day cycle. I'm going to eliminate all nuts, keep my fruit to only bananas and applesauce. I have more selection when it comes to veggies, but will keep the fiber down to very little. I will eat a lot of rice in one form or another and of course meat. My main concern is not losing any more weight; hence the reason I've been taking the Imodium as well as the Entocort. I don't think I am going to be in any hurry of getting off of Entocort since I have not had much luck with staying in remission. The burning does not happen often, but when it has, it is such a surprise. I've also had a lot of gas pain recently which implies stress to me. I'm going to order that new book that Polly just put in a thread; The Relaxation Response.
Theresa, Joe and Zizzle, thanks for listening to me and I feel your support!
Theresa, this is a disease of steps.............forward and backwards.
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Ginny,
I'm so sorry that you are having problems. I think you will eventually figure all of this out, but it sounds like it will take you a long time, like it has with me. I very reluctantly gave up all fruit. I also gave up all nuts until this fall, when I was able to begin eating nut butters. Each food that I gave up provided a temporary reprieve, but then another intolerance would appear. After a while, there aren't very many foods left to remove. I hope you find the last of your intolerances soon.
Imodium AD is the one that doesn't contain any lactose.
Good luck. I'm keeping you in my prayers and am hoping that work will become less stressful for you.
Gloria
I'm so sorry that you are having problems. I think you will eventually figure all of this out, but it sounds like it will take you a long time, like it has with me. I very reluctantly gave up all fruit. I also gave up all nuts until this fall, when I was able to begin eating nut butters. Each food that I gave up provided a temporary reprieve, but then another intolerance would appear. After a while, there aren't very many foods left to remove. I hope you find the last of your intolerances soon.
Imodium AD is the one that doesn't contain any lactose.
Good luck. I'm keeping you in my prayers and am hoping that work will become less stressful for you.
Gloria
You never know what you can do until you have to do it.
Gloria, I do believe I am going down the same path as you; food and weight loss. Yep, that is exactly what happens to me, I remove something and feel better for awhile until something else decides to gives me trouble. That's the Imodium I use. I've used it for the last 2 years off an on, so I didn't think that was my problem. Anyway it gives me some relief. Gloria one question, do you eat the same meat all day? I usually mixed my meats before but have decided I would stick to a 3 day plan with the same meat all day. Would love an update on how you are doing? Is it still very firm??
Catsrule, many of us would tell you some days are not easy to go to work and trust me I have wanted to quit a lot in the last 2 years. I don't know your job situation, but if possible make your boss aware of your medical issues. People are generally sympathetic and understanding. I always made it to work, but there were many days I left early especially when I am flaring. I also gave myself plenty of time in the morning before leaving to work. I got up an extra hour earlier to give myself enough time in the bathroom and I did not want to start the day out in a rush. Again, its the whole principle of one day at a time. Plan your food for work accordingly for the whole week; that will ease your mind and not add additional stress. Stay with simple foods that are easy to digest to start with until you really see improvement. My mistake has always been that as soon as I feel good for a couple of weeks or more I would immediately start trying to add back in foods (fiber) that eventually would catch up with me. As you can see, I have been on Entocort now for a year with the exception of a few unsuccessful tries at remission. Take your time in your healing. We are all different and some of us take longer and some take a short time. BUT you will get there. Finally remember that you have all of us to fall back on to, cry, scream, give advice, whatever you need. We are here for you. Ginny
Catsrule, many of us would tell you some days are not easy to go to work and trust me I have wanted to quit a lot in the last 2 years. I don't know your job situation, but if possible make your boss aware of your medical issues. People are generally sympathetic and understanding. I always made it to work, but there were many days I left early especially when I am flaring. I also gave myself plenty of time in the morning before leaving to work. I got up an extra hour earlier to give myself enough time in the bathroom and I did not want to start the day out in a rush. Again, its the whole principle of one day at a time. Plan your food for work accordingly for the whole week; that will ease your mind and not add additional stress. Stay with simple foods that are easy to digest to start with until you really see improvement. My mistake has always been that as soon as I feel good for a couple of weeks or more I would immediately start trying to add back in foods (fiber) that eventually would catch up with me. As you can see, I have been on Entocort now for a year with the exception of a few unsuccessful tries at remission. Take your time in your healing. We are all different and some of us take longer and some take a short time. BUT you will get there. Finally remember that you have all of us to fall back on to, cry, scream, give advice, whatever you need. We are here for you. Ginny
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Oh Ginny,
I wish I had a magic wand to wave and make it all better~~~~~~~~~~~~~~~~~~~~~~
I think we are so much alike. (Not just because we both get up extra early on those bad days, LOL). I agree with Tex - there may be a hidden intolerance (have you checked toothpaste, mouthwash, all meds?) Sometimes we have to recheck everything by calling the manufacturer - it has happened that a formerly safe product changes its ingredients slightly and becomes unsafe.
And the stress - I think it is the major factor for both of us. As soon as I get the relaxation book (in the next few days) and can review it, I will let you know. Something that helps me in times of increased stress is self-talk. Well, not out loud if people are around. Tee Hee. In my mind I become stern with myself and say "OK, now, let's stop reacting to this stress - RIGHT NOW. Let's breathe slowly and deeply and put those negative thoughts out of my mind." I say this over and over and sometimes visualize myself literally sweeping those harmful thoughts out of a circle with a broom. (You didn't know I was crazy, did you?). Sometimes it helps to rid the mind of these thoughts if we really pay total attention to the moment we are in, the present.
I hear you about the job. No wonder you are stressed - you are in between a rock and a hard place. I am sure you have explored every possibility related to the health insurance issue. If that truly is non-negotiable, is there any way you can come to some acceptance that you really have no choice other than to work for now? I can imagine how knotted your gut becomes every time those thoughts of anger and frustration over the job enter your mind. I react the same way and really understand what you're saying. You know, this may sound weird, but the job itself may not be as hard on your gut as those angry thoughts swirling around in your mind. The bad news is that we may have to put up with certain stresses. The good news is that we can control how we react to them, how the mind processes them. Learning to turn off that endless chatter in the mind may perhaps be life's greatest challenge, IMHO. It's too bad our bodies release stress chemicals in either case - during the actual situation (flight or fight) as well as during the thoughts of that situation. And in our cases, I believe those stress chemicals go immediately to our guts.
Well, now that you know I am certifiable, I'll stop babbling on. I really do understand. I am not saying I can follow my own advice - I am a work in progress, but I am determined to figure out this mind/gut connection and slay the beast.
Hang in there, my friend.
Love,
Polly
I wish I had a magic wand to wave and make it all better~~~~~~~~~~~~~~~~~~~~~~
I think we are so much alike. (Not just because we both get up extra early on those bad days, LOL). I agree with Tex - there may be a hidden intolerance (have you checked toothpaste, mouthwash, all meds?) Sometimes we have to recheck everything by calling the manufacturer - it has happened that a formerly safe product changes its ingredients slightly and becomes unsafe.
And the stress - I think it is the major factor for both of us. As soon as I get the relaxation book (in the next few days) and can review it, I will let you know. Something that helps me in times of increased stress is self-talk. Well, not out loud if people are around. Tee Hee. In my mind I become stern with myself and say "OK, now, let's stop reacting to this stress - RIGHT NOW. Let's breathe slowly and deeply and put those negative thoughts out of my mind." I say this over and over and sometimes visualize myself literally sweeping those harmful thoughts out of a circle with a broom. (You didn't know I was crazy, did you?). Sometimes it helps to rid the mind of these thoughts if we really pay total attention to the moment we are in, the present.
I hear you about the job. No wonder you are stressed - you are in between a rock and a hard place. I am sure you have explored every possibility related to the health insurance issue. If that truly is non-negotiable, is there any way you can come to some acceptance that you really have no choice other than to work for now? I can imagine how knotted your gut becomes every time those thoughts of anger and frustration over the job enter your mind. I react the same way and really understand what you're saying. You know, this may sound weird, but the job itself may not be as hard on your gut as those angry thoughts swirling around in your mind. The bad news is that we may have to put up with certain stresses. The good news is that we can control how we react to them, how the mind processes them. Learning to turn off that endless chatter in the mind may perhaps be life's greatest challenge, IMHO. It's too bad our bodies release stress chemicals in either case - during the actual situation (flight or fight) as well as during the thoughts of that situation. And in our cases, I believe those stress chemicals go immediately to our guts.
Well, now that you know I am certifiable, I'll stop babbling on. I really do understand. I am not saying I can follow my own advice - I am a work in progress, but I am determined to figure out this mind/gut connection and slay the beast.
Hang in there, my friend.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi,
I agree with Tex. Probably is dairy hidden somewhere. I was basically experiencing the same issues, when one day, I actually read the lable on these frozen vegetables I like (green giant) and the label said contains milk. Can you believe it? They are putting milk in everything. Needless to say, I discontinued them, and my D stopped.
I recommend you check the lables on the items you are eating right now. Also, I would not think nuts would be too good for you right now, they are very hard to digest.
Good luck,
karen
I agree with Tex. Probably is dairy hidden somewhere. I was basically experiencing the same issues, when one day, I actually read the lable on these frozen vegetables I like (green giant) and the label said contains milk. Can you believe it? They are putting milk in everything. Needless to say, I discontinued them, and my D stopped.
I recommend you check the lables on the items you are eating right now. Also, I would not think nuts would be too good for you right now, they are very hard to digest.
Good luck,
karen
Hi Ginny,
So sorry to hear of your continuing struggles - hang in there, I'm confident that you will figure it out - the PP family is certainly behind you 100%!!! This disease is incredibly humbling and challenging. One of the positives I'm gaining from my struggle with MC, is that I am becoming much softer and more forgiving as a person. Any arrogance and self conceit that I may ever have felt or exhibited is eroding away. MC simply will not tolerate a "cocky" person :).
I so wish there was something I could say or do to make things better for you, but I can't think of anything to add that hasn't already been said by others. Sending you lots of healing thoughts and hope tomorrow will be a better day for you.
Love,
Kari
So sorry to hear of your continuing struggles - hang in there, I'm confident that you will figure it out - the PP family is certainly behind you 100%!!! This disease is incredibly humbling and challenging. One of the positives I'm gaining from my struggle with MC, is that I am becoming much softer and more forgiving as a person. Any arrogance and self conceit that I may ever have felt or exhibited is eroding away. MC simply will not tolerate a "cocky" person :).
I so wish there was something I could say or do to make things better for you, but I can't think of anything to add that hasn't already been said by others. Sending you lots of healing thoughts and hope tomorrow will be a better day for you.
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
Ginny,
Yes, I eat the same meat all day long, then switch to a different meat the next day. I'm not certain that rotating foods has helped minimize becoming intolerant to additional foods, but it has made it easier to determine which foods are causing a reaction. When I eat the same foods every three days, and get a reaction every third day, then I focus my attention on the food I ate the day before.
Gloria
Yes, I eat the same meat all day long, then switch to a different meat the next day. I'm not certain that rotating foods has helped minimize becoming intolerant to additional foods, but it has made it easier to determine which foods are causing a reaction. When I eat the same foods every three days, and get a reaction every third day, then I focus my attention on the food I ate the day before.
This is a very real temptation, and I struggle with it, too. Now that I'm feeling great, I'm noticing that I'm more tempted to try foods I've eliminated. So far, I've managed to resist because I know the consequences. But I have to fight it daily and keep telling myself that I'll be able to test the foods in due time. It's a hard battle that we're fighting.Ginny wrote:My mistake has always been that as soon as I feel good for a couple of weeks or more I would immediately start trying to add back in foods (fiber) that eventually would catch up with me.
Gloria
You never know what you can do until you have to do it.