Suzanne, before I read Leah' reply, I thought the same thing about the rice. I do so much better without grains.
Hope you're better soon.
Jean
I'm not in remission anymore
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi all,
I made out okay at work today, I was just really tired.
The Dr. appointment was what I expected, he prescribed Entocort, so I will take that again. My insurance paid for the generic. I think I did all right on it the last time, I didn't stay on the 9 mg. very long because it made me too constipated. Hopefully I'll do all right on the generic. The Dr. doesn't believe that diet has anything to do with the colitis. He indicated that he wasn't sure that the colitis was back or if it was just IBS. He wanted me to take the Librax and I reminded him that I did not tolerate it well and that it didn't mix well with the flexeril I take for my fibromyalgia and that my pharmacist questioned it. He took offense to that and his reply was that there are lots of patients with both colitis and fibromyalgia that take both. The Dr.'s appointment was just a means to an end. I kept my mouth shut and took the prescription for the Entocort. Hopefully it will calm things down enough and I can get my diet in order.
Leah and Jean, I will cut the rice out. Thank you. I didn't even think of that, I thought it was safe. I had a problem when I tried quinoa. I know that I have a problem with corn and peas (and probably should have avoided anyway).
Carol, you mentioned that taking Entocort the 2nd time around was rough. I'm keeping my fingers crossed that I don't have a problem.
Thanks to all, I will keep you updated.
Susanne
I made out okay at work today, I was just really tired.
The Dr. appointment was what I expected, he prescribed Entocort, so I will take that again. My insurance paid for the generic. I think I did all right on it the last time, I didn't stay on the 9 mg. very long because it made me too constipated. Hopefully I'll do all right on the generic. The Dr. doesn't believe that diet has anything to do with the colitis. He indicated that he wasn't sure that the colitis was back or if it was just IBS. He wanted me to take the Librax and I reminded him that I did not tolerate it well and that it didn't mix well with the flexeril I take for my fibromyalgia and that my pharmacist questioned it. He took offense to that and his reply was that there are lots of patients with both colitis and fibromyalgia that take both. The Dr.'s appointment was just a means to an end. I kept my mouth shut and took the prescription for the Entocort. Hopefully it will calm things down enough and I can get my diet in order.
Leah and Jean, I will cut the rice out. Thank you. I didn't even think of that, I thought it was safe. I had a problem when I tried quinoa. I know that I have a problem with corn and peas (and probably should have avoided anyway).
Carol, you mentioned that taking Entocort the 2nd time around was rough. I'm keeping my fingers crossed that I don't have a problem.
Thanks to all, I will keep you updated.
Susanne
Susanne, Your description of your day sounds just like many days I had early on. The only difference was that I did not always have D but had horrid nausea, and I had everything else you named- the dizziness, shaking, dehydration (or the feeling of being dehydrated which I think was part of being on steroids), weak, tired, working sick (I really hate working sick), and even light headed when I was driving. Even down the chicken, rice, carrots and diluted Gatorade-- that's about what I lived on, but Gatorade aggravates my stomach due to the acid and sugar-- so diluted it and eventually gave it up.
You may want to try to get more protein in the morning. I usually couldn't eat in the morning until about 9:30 or 10:00, but I'd take deli turkey and either rice cakes or the reduced fat Lays Naturals potato chips with me to work and pull them out at the first sign that my stomach was ready for food. I craved salty things and these helped, but forcing myself to get some protein down was very helpful. I found it helped me keep my blood sugar even and I felt less weak. I made sure I always had a bottled water available and I'd drink 3-4 per day while at work. I started taking gummy vitamins because it was the best way for me to get vitamins-- tablets didn't set that well on my stomach. And I paced myself as best I could. I minimized running up and down stairs at work, for example. Anything I could do to conserve energy.
I would also consider, like Leah said, maybe you are sensitive to rice. It's not common but there are some people on this site that cannot tolerate rice. You might try increasing your lean meats, and well cooked vegetables and dropping the rice for several days to see if it makes a difference.
Keep us posted. I know the feeling-- like you have an intestinal virus every day--and it sucks. It does get better. I'm an SOOOOO much better than I was even a year ago. I hope things turn around for you quickly.
Carol
You may want to try to get more protein in the morning. I usually couldn't eat in the morning until about 9:30 or 10:00, but I'd take deli turkey and either rice cakes or the reduced fat Lays Naturals potato chips with me to work and pull them out at the first sign that my stomach was ready for food. I craved salty things and these helped, but forcing myself to get some protein down was very helpful. I found it helped me keep my blood sugar even and I felt less weak. I made sure I always had a bottled water available and I'd drink 3-4 per day while at work. I started taking gummy vitamins because it was the best way for me to get vitamins-- tablets didn't set that well on my stomach. And I paced myself as best I could. I minimized running up and down stairs at work, for example. Anything I could do to conserve energy.
I would also consider, like Leah said, maybe you are sensitive to rice. It's not common but there are some people on this site that cannot tolerate rice. You might try increasing your lean meats, and well cooked vegetables and dropping the rice for several days to see if it makes a difference.
Keep us posted. I know the feeling-- like you have an intestinal virus every day--and it sucks. It does get better. I'm an SOOOOO much better than I was even a year ago. I hope things turn around for you quickly.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Susanne,
I did have a rough time with Entocort the second time but in hindsight I wish I had just dealt with the flare and waited for it to die down, but instead I panicked because it had gone on 3 days and I knew I was having inflammation (and I was dizzy, etc) and my big fear was that I was headed to a big flare that would go on for weeks. It was all very new to me at the time. Looking back I don't think I needed the Entocort and that's why I had so many side effects. Now that I've lived with LC longer I am more able to predict what is going on and what I need to do.
so I think I was taking Entocort that I didn't need. I don't think that's the case for you and I hope you do well on it.
Carol
I did have a rough time with Entocort the second time but in hindsight I wish I had just dealt with the flare and waited for it to die down, but instead I panicked because it had gone on 3 days and I knew I was having inflammation (and I was dizzy, etc) and my big fear was that I was headed to a big flare that would go on for weeks. It was all very new to me at the time. Looking back I don't think I needed the Entocort and that's why I had so many side effects. Now that I've lived with LC longer I am more able to predict what is going on and what I need to do.
so I think I was taking Entocort that I didn't need. I don't think that's the case for you and I hope you do well on it.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Good for you for doing your homework, so that you knew more about it than he did. He showed very poor judgment by using such an asinine argument.Susanne wrote:He wanted me to take the Librax and I reminded him that I did not tolerate it well and that it didn't mix well with the flexeril I take for my fibromyalgia and that my pharmacist questioned it. He took offense to that and his reply was that there are lots of patients with both colitis and fibromyalgia that take both.
Good luck with your recovery treatment.
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.
Hi all,
It’s been one week on the generic Entocort, 9 mg. a day. I believe that I finally achieved a norman today. However, I am experiencing a lot of stomach pains and gas. I had to keep on running downstairs to the bathroom at work today just to pass gas!!!!!!!! I have also been experiencing stabbing pains in my head and I’m guessing all this is from the Entocort. Maybe 9 mg. is too much? It’s too soon to say that I feel better, if the stomach/gas and head pains would just go away. I guess I’m asking for too much too soon.
I have removed all the questionable foods from my diet, I took the brown rice out of my lunch of rice, chicken and well-cooked green beans and carrots, so now it is just the chicken and well-cooked green beans and carrots. I got rid of the cinnamon Chex and Chex for breakfast and I made cream of rice for a few days and then I made a sweet potato, ham and wilted spinach sauté which is pretty good. Dinners are the easiest meal and I’m doing okay there. I made cookies with Sunbutter and GF rolled oats, I don’t know about those, I think the oats might be too much but they are really good. I got rid of the chocolate, hard for a chocoholic.
I still get up hours before I need to in the morning, just in case the D comes back, so I can get to work on time. I am watching everything I eat like a hawk. I have told them at work about my problem, they don’t understand, it’s always, “do you want some cake” or “can’t you have a bagel”? I’ve learned the hard way about avoiding the foods you are sensitive too, you have to avoid them 100% of the time or you will relapse.
I was remembering when I was in my 20's being diagnosed with the egg allergy, it was done with a panel of bloodwork for allergies. I remember being on an "ulcer diet" (really bland foods) and taking Maalox all the time. I also remember a period of time when I could eat anything that I wanted with no problem and then gradually everything changed. This is really hard, I really want a egg, cheese and sausage sandwich on a english muffin or bagel, I guess I'll have one in my dreams, that will have to do.
On another note, I do have the support of my 28 year old daughter, who at a much younger age, follows in my footsteps. She has had problems with milk, cheese, etc. for years. Lactaid never helped her. She also has problems with wheat based foods. She tries her best to avoid them and has sent me several recipes (mostly paleo) to try. She doesn't have health insurance nor does she have the money to get tested. She sees what I am going through and she doesn't want to end up like me.
I would appreciate any breakfast/lunch ideas that you have, I will also do a search.
Thanks for listening,
Susanne
It’s been one week on the generic Entocort, 9 mg. a day. I believe that I finally achieved a norman today. However, I am experiencing a lot of stomach pains and gas. I had to keep on running downstairs to the bathroom at work today just to pass gas!!!!!!!! I have also been experiencing stabbing pains in my head and I’m guessing all this is from the Entocort. Maybe 9 mg. is too much? It’s too soon to say that I feel better, if the stomach/gas and head pains would just go away. I guess I’m asking for too much too soon.
I have removed all the questionable foods from my diet, I took the brown rice out of my lunch of rice, chicken and well-cooked green beans and carrots, so now it is just the chicken and well-cooked green beans and carrots. I got rid of the cinnamon Chex and Chex for breakfast and I made cream of rice for a few days and then I made a sweet potato, ham and wilted spinach sauté which is pretty good. Dinners are the easiest meal and I’m doing okay there. I made cookies with Sunbutter and GF rolled oats, I don’t know about those, I think the oats might be too much but they are really good. I got rid of the chocolate, hard for a chocoholic.
I still get up hours before I need to in the morning, just in case the D comes back, so I can get to work on time. I am watching everything I eat like a hawk. I have told them at work about my problem, they don’t understand, it’s always, “do you want some cake” or “can’t you have a bagel”? I’ve learned the hard way about avoiding the foods you are sensitive too, you have to avoid them 100% of the time or you will relapse.
I was remembering when I was in my 20's being diagnosed with the egg allergy, it was done with a panel of bloodwork for allergies. I remember being on an "ulcer diet" (really bland foods) and taking Maalox all the time. I also remember a period of time when I could eat anything that I wanted with no problem and then gradually everything changed. This is really hard, I really want a egg, cheese and sausage sandwich on a english muffin or bagel, I guess I'll have one in my dreams, that will have to do.
On another note, I do have the support of my 28 year old daughter, who at a much younger age, follows in my footsteps. She has had problems with milk, cheese, etc. for years. Lactaid never helped her. She also has problems with wheat based foods. She tries her best to avoid them and has sent me several recipes (mostly paleo) to try. She doesn't have health insurance nor does she have the money to get tested. She sees what I am going through and she doesn't want to end up like me.
I would appreciate any breakfast/lunch ideas that you have, I will also do a search.
Thanks for listening,
Susanne
Susanne, when I was titrating off Entocort the way I knew it was time to decrease the dosage was when I would start having cramping and my C would get worse. I didn't really have gas with it, but your stomach/gut discomfort could be from Entocort. The only way to know would be to drop to 6 mg and see if it goes away.
When it comes to the sharp head pains--- I've got nothing. I really don't know what that could be related to. Sounds awful-- I hope that goes away too.
Glad you are making progress.
Carol
When it comes to the sharp head pains--- I've got nothing. I really don't know what that could be related to. Sounds awful-- I hope that goes away too.
Glad you are making progress.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Susanne. I would also try to lower your dose. maybe three one day and two the next?
I don't have great ideas for breakfast since i eat eggs, Chex, and some GF toast. I'm not sure you should be doing the oats though...???
Glad to hear that you are getting some relief from the D,but I know how miserable gas can be. Give it time.
leah
I don't have great ideas for breakfast since i eat eggs, Chex, and some GF toast. I'm not sure you should be doing the oats though...???
Glad to hear that you are getting some relief from the D,but I know how miserable gas can be. Give it time.
leah
I'm just getting back to some of the threads I didn't read while on my vacation.
Here is a link to my EF, GF, SF, vinegar-free salad dressing: http://www.perskyfarms.com/phpBB2/viewt ... 9149#99149
Made per the recipe, it is the consistency of mayonaisse. By adding a little more milk, it could be used as a salad dressing. I still can't eat lettuce, so I've never used it as a salad dressing.
Gloria
Here is a link to my EF, GF, SF, vinegar-free salad dressing: http://www.perskyfarms.com/phpBB2/viewt ... 9149#99149
Made per the recipe, it is the consistency of mayonaisse. By adding a little more milk, it could be used as a salad dressing. I still can't eat lettuce, so I've never used it as a salad dressing.
Gloria
You never know what you can do until you have to do it.
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
After a lot of experimenting, I eat Jones sausage, nitrate free, or a paleo muffin for breakfast. The recipe for the muffin is in Dees kitchen. You may not be ready for it until you have less inflammation. After a year, I added a fruit smoothie to my breakfast. I use all frozen fruit: 1/2 banana, 1-2 strawberries, 2 chunks of mango, 2-3 slices of peach, handful of raspberries and a T raspberry sorbet. Add apple juice and make a smoothie. I've always been sensitive to fruit but this smoothie hasn't bothered me at all.
I had been eating Chex and almond milk but I don't feel particularly well after I eat it. Nothing major, just queasy. Modified paleo seems to be the most trouble free for me.
BTW, I'm a chocoholic too.
I make chocolate chip cookies using Enjoy Life mini chips and/or mega chunks. They are soy free, dairy free and taste fine in a cookie. They aren't paleo but life is short and if I don't get greedy, they don't seem to bother me.
Sheila W
I had been eating Chex and almond milk but I don't feel particularly well after I eat it. Nothing major, just queasy. Modified paleo seems to be the most trouble free for me.
BTW, I'm a chocoholic too.
I make chocolate chip cookies using Enjoy Life mini chips and/or mega chunks. They are soy free, dairy free and taste fine in a cookie. They aren't paleo but life is short and if I don't get greedy, they don't seem to bother me.Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein