Hi all,
I have CC and I’m not in remission anymore. It’s my own fault, I haven’t been careful, I haven’t been watching and I’ve been lazy about taking care of myself.
Enterolab results showed that I am sensitive to gluten, casein, soy and egg. I have been off Entocort since November 2010. This relapse started slowly, a little flare here and there, and then in mid-March, it all changed. I was going away for a long weekend, the night before the flight I had D all through the night, 5 Imodium’s later I was able to leave the house to catch my flight. The Imodium plugged me up so bad, I was miserable and in a lot of discomfort the whole weekend. I learned that Imodium is not my friend; I try real hard not to take it.
Fast forward to now; the D is back along with symptoms that I don’t remember experiencing: feeling nauseous but not throwing up, some belching, pain across my midsection in the area below my breasts and above my navel, pain in my back shooting up between my shoulder blades, a pinching feeling, around waist level on the left side and sometimes a dull ache in the kidney area. The D is also different; it is not the “mud” I had before but very small pieces with a lot of gas and fluids. I hope that wasn’t too graphic. With the D, before I was treated with the entocort, it would hit mainly in the AM, now it is whenever it feels like. Returning symptoms of leg cramps, pain in the top of my foot and toe cramps are frequent and very painful. I had oral lichen planus in 2006 and I believe that it has returned. However, my bone density scan revealed improvement whereas the readings are back to the original readings done in 2003.
I’m currently taking generic Flexeril for fibromyalgia and, levothyroxine for underactive thyroid, and generic arthritis strength acetaminophen for arthritis in my hands. I don’t know if these are gluten free. I haven’t gone back to my GI yet, he is nice and has a very pleasant manner but he doesn’t acknowledge that food plays a role in the CC and has previously given me medications that don’t mix well with the Flexeril and leave me feeling really drugged with blurry vision. The last medication he gave me was Librax, the pharmacist couldn’t believe the Dr. would prescribe that when I was taking Flexeril. The GI has a list of my medications.
I don’t know where to go from here, I never feel good and I’m always fatigued. Any input would be greatly appreciated.
Thanks,
Susanne
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 Susanne,
Yes, Librax should not be taken if you're taking Flexeril.
If I were in your situation, I would start my recovery by making sure that my diet was free of all my food sensitivities.
Tex
Yes, Librax should not be taken if you're taking Flexeril.
If I were in your situation, I would start my recovery by making sure that my diet was free of all my food sensitivities.
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.
Susanne, So sorry you are going through such a hard time.
Like tex said, your first line of defense is to clean up your diet pronto. You should probably take all the "irritants" out of your diet also.... like RAW fruits and veggies, salad, beans and legumes, citrus, spicy, maybe caffine..... etc. I would stay with a very simple diet for a while of meats , very cooked veggies, and maybe rice.
In the meantime, you might consider going back on Entocort to help with the symptoms while you are cleaning up the diet.
There are some people on this forum who experience many of the symptoms you are describing. Hopefully, they will chime in about what you can do about the nausea and such.
i hope you get control soon.
Take care
leah
Like tex said, your first line of defense is to clean up your diet pronto. You should probably take all the "irritants" out of your diet also.... like RAW fruits and veggies, salad, beans and legumes, citrus, spicy, maybe caffine..... etc. I would stay with a very simple diet for a while of meats , very cooked veggies, and maybe rice.
In the meantime, you might consider going back on Entocort to help with the symptoms while you are cleaning up the diet.
There are some people on this forum who experience many of the symptoms you are describing. Hopefully, they will chime in about what you can do about the nausea and such.
i hope you get control soon.
Take care
leah
Oh, my, I'm sorry to hear you have so much going on. Watching our foods and our meds can be so exhausting! And when we feel we can't trust our doctors, everything is that much harder. I hope you find one who treats your whole person and really listens to your needs and concerns. :( And I hope you feel better soon.
Hi,
I'm so sorry to hear that!
I would, like Tex said, watch the diet. Eliminate all the food sensitivities. Also, I looked up some breathing techniques to calm me down. It helps when I'm feeling nauseaus. I'm often nauseaus when I have flares. You can find lots of techniques on the internet.
Next, I would begin my search for a new GI... I don't think that he is being careful enough. He has a list of your medication, but still, he manages to mix medicine that don't go together.
Maybe you could consider going back on entocort? Just for a little while?
Good luck!!
Julie
I'm so sorry to hear that!
I would, like Tex said, watch the diet. Eliminate all the food sensitivities. Also, I looked up some breathing techniques to calm me down. It helps when I'm feeling nauseaus. I'm often nauseaus when I have flares. You can find lots of techniques on the internet.
Next, I would begin my search for a new GI... I don't think that he is being careful enough. He has a list of your medication, but still, he manages to mix medicine that don't go together.
Maybe you could consider going back on entocort? Just for a little while?
Good luck!!
Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
Hi everyone,
Thank you for your replies.
I started off by finding out if the generic medications and the generic arthritis strength acetaminophen that I take are gluten free and according to the internet, the generic meds are gf and I called the company about the acetaminophen and it is as well. I don't know if they are casein or soy free.
I haven's knowingly ingested anything with gluten since the last bad D on the weekend and the past few days haven't been too bad. I read someone's post today about gluten free Chex, I eat it everyday for breakfast and as a snack. I know that the cinnamon Chex has fructose in it and that is on the FODMAPS list of what to avoid that the GI gave me, I eat it anyway. I think I should find something else for breakfast. I know that the Udis GF bread I buy for lunchtime has egg in it and I purchase the the Boars Head deli because they are gluten free. Since the weekend, dinner time has been pretty much grilled steak, chicken, with a mayo free potato salad and one night I had GF pasta. Recently I have noticed that the few times I ate something with mayo in it, I got D. I need to wean off my 1 cup of black coffee per day and my chocolate habit (I'm a chocoholic). I have already stopped my indulgence of white wine with dinner. Those are my only vices.
I bought a book when I was first diagnosed from Cecilia's Marketplace, a gluten free, soy and casein free shopping guide. Is anybody familiar with it? I guess I didn't look at it enough, so when I'm planning this week's shopping and meals, I will consult the book and my FODMAPS list and hopefully do a better job.
This is hard, my DH is not that supportive, but it's nobody's fault but my own.
I want to clean up my diet and see if it makes a difference before I call my GI. He has had me on Asacol, Bentyl and Librax and I had problems with all of them. The only food related solution he has provided me with is the FODMAPS list.
Thank you all again, I really appreciate it.
Susanne
Thank you for your replies.
I started off by finding out if the generic medications and the generic arthritis strength acetaminophen that I take are gluten free and according to the internet, the generic meds are gf and I called the company about the acetaminophen and it is as well. I don't know if they are casein or soy free.
I haven's knowingly ingested anything with gluten since the last bad D on the weekend and the past few days haven't been too bad. I read someone's post today about gluten free Chex, I eat it everyday for breakfast and as a snack. I know that the cinnamon Chex has fructose in it and that is on the FODMAPS list of what to avoid that the GI gave me, I eat it anyway. I think I should find something else for breakfast. I know that the Udis GF bread I buy for lunchtime has egg in it and I purchase the the Boars Head deli because they are gluten free. Since the weekend, dinner time has been pretty much grilled steak, chicken, with a mayo free potato salad and one night I had GF pasta. Recently I have noticed that the few times I ate something with mayo in it, I got D. I need to wean off my 1 cup of black coffee per day and my chocolate habit (I'm a chocoholic). I have already stopped my indulgence of white wine with dinner. Those are my only vices.
I bought a book when I was first diagnosed from Cecilia's Marketplace, a gluten free, soy and casein free shopping guide. Is anybody familiar with it? I guess I didn't look at it enough, so when I'm planning this week's shopping and meals, I will consult the book and my FODMAPS list and hopefully do a better job.
This is hard, my DH is not that supportive, but it's nobody's fault but my own.
I want to clean up my diet and see if it makes a difference before I call my GI. He has had me on Asacol, Bentyl and Librax and I had problems with all of them. The only food related solution he has provided me with is the FODMAPS list.
Thank you all again, I really appreciate it.
Susanne
Yeah ,the mayo thing is a problem because they are all made from soybean oil. I buy HAIN'S brand which uses safflower oil.
i also eat dark chocolate in very small quantities, but when I start to decline, it's one of the things I try to avoid because of the soy lethicin.
Fructose is a problem for me also. That is why I mix non sweetened Chex with a bit of cinnamon Chex. Again, when I am not doing as well, I cut the sweets out for a while.
I think there are probably GF brands of bread that don't have egg, but I do best if I skip all GF processed products also when flaring.
Good luck
leah
i also eat dark chocolate in very small quantities, but when I start to decline, it's one of the things I try to avoid because of the soy lethicin.
Fructose is a problem for me also. That is why I mix non sweetened Chex with a bit of cinnamon Chex. Again, when I am not doing as well, I cut the sweets out for a while.
I think there are probably GF brands of bread that don't have egg, but I do best if I skip all GF processed products also when flaring.
Good luck
leah
.jpg){kind=avatar}
It is possible to make your own salad dressing (mayo). You can find recipes online or in Dee's Kitchen. I adapted a recipe I found online to accomodate my intolerances which include olive oil, soybean oil, eggs and vinegar - all which are commonly used in mayonaisse. I actually like the taste of my homemade spread better.
Gloria
Gloria
You never know what you can do until you have to do it.
HI Susanne,
for me nausea was HUGE and even a bigger problem for me than lower GI symptoms. My Dr. gave me Zofran which was okay if I was going to be at home-- initially it made me feel sedated. Eventually I became used to it and I could take it at work. In my case my endoscope also showed I had irritation and erosion in my stomach so they prescribed Dexilant to lower acid and promote healing. I'm now decreasing that because of the long term effects of PPIs. These things helped but I also found that over the counter Bonine (meclizine) is a big help without the side effects of Zofran. Last summer I decided I was tired of taking the meds and my nausea had reduced to only a couple days a week, I decided to get acupuncture treatments and that really helped me to turn the corner. by the second treatment my nausea stayed away all week. I continued to get treatments and they were terrific for me.
Nausea, which I see as an extension of the lower GI inflammation, also makes it extremely hard to get any nutrition. I just had simple bland foods with me at all times and as soon as it lifted a little I would try to eat something and that seemed to help. I'm talking things like plain Rice Chex, rice cakes, and Lays Natural potato chips-- for whatever reason I can tolerate those. Usually the nausea was strongest when I woke up and eased as the day went on. Often by 11:00am it would be easing up.
I'm sorry you are in a big flare. I've rigid about staying on my allergen diet and there are mornings that I still feel rough (mostly fatigued). It will take awhile to heal so be patient with yourself. People told me to expect it to take 2 years to heal and they were right. I'm in remission now but it was quite the process to get here. Just fyi-- I had to get back on Entocort for about 1 month after I had been off of it for 3 months. My nausea and feeling weak were worse the second time around. I was glad to get off of the Entocort. It was my lifesaver when I first became sick but the second time around it made me miserable. it does come with it's own set of side effects. But in your case they may be worth a try. Only you can decide.
I hope you get feeling better soon.
Carol
for me nausea was HUGE and even a bigger problem for me than lower GI symptoms. My Dr. gave me Zofran which was okay if I was going to be at home-- initially it made me feel sedated. Eventually I became used to it and I could take it at work. In my case my endoscope also showed I had irritation and erosion in my stomach so they prescribed Dexilant to lower acid and promote healing. I'm now decreasing that because of the long term effects of PPIs. These things helped but I also found that over the counter Bonine (meclizine) is a big help without the side effects of Zofran. Last summer I decided I was tired of taking the meds and my nausea had reduced to only a couple days a week, I decided to get acupuncture treatments and that really helped me to turn the corner. by the second treatment my nausea stayed away all week. I continued to get treatments and they were terrific for me.
Nausea, which I see as an extension of the lower GI inflammation, also makes it extremely hard to get any nutrition. I just had simple bland foods with me at all times and as soon as it lifted a little I would try to eat something and that seemed to help. I'm talking things like plain Rice Chex, rice cakes, and Lays Natural potato chips-- for whatever reason I can tolerate those. Usually the nausea was strongest when I woke up and eased as the day went on. Often by 11:00am it would be easing up.
I'm sorry you are in a big flare. I've rigid about staying on my allergen diet and there are mornings that I still feel rough (mostly fatigued). It will take awhile to heal so be patient with yourself. People told me to expect it to take 2 years to heal and they were right. I'm in remission now but it was quite the process to get here. Just fyi-- I had to get back on Entocort for about 1 month after I had been off of it for 3 months. My nausea and feeling weak were worse the second time around. I was glad to get off of the Entocort. It was my lifesaver when I first became sick but the second time around it made me miserable. it does come with it's own set of side effects. But in your case they may be worth a try. Only you can decide.
I hope you get feeling better soon.
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 all,
Thank you all for the suggestions. Here is what I did. I cut the chocolate down alot but not out yet, I changed the Chex with Cream of Rice and for lunch I made a brown rice dish for the week with chicken and well cooked green beans and carrots. This is what happened next: the D continued as before. Yesterday I got up at 4:00 am because I had to be at work at 7:30 am, I always get up extra early because I know the D will come. Well it came and I had to take the dreaded immodium to get out of the house. I was feeling very fatigued yesterday, more so than usual. Around 9:45 am, I was taking care of a customer and said to no one in particular, I think I better sit down. I was so dizzy, I was shaking, my legs were like rubber and I was told that I turned as white as a ghost, however, I didn't pass out. I don't know if I was dehydrated, my low blood pressure bottomed out or if my blood sugar plunged. My coworkers pumped alot of water and some sugary items into me. I wound up staying at work, even though I didn't feel good because I had no way to get home, they wouldn't let me drive. At closing time I felt a little better and managed to drive home without incident. I called my Gi and I have an appointment today, that is the fastest I ever got an appointment with him. I went to bed extra early because I was still so fatigued.
I feel better today, still very fatigued but I'm going to work. I have a bunch of snacks (gluten free of course) and my rice & chicken for lunch and Gatorade. I did not have any D today but I think it is because of the immodium I had to take yesterday. That usually happens.
I hope I fare better today. I will post the outcome of my GI visit. I have a list of the meds he has given me that I have not been able to take so he doesn't try to give them to me again.
Again, thank you for listening.
Susanne
Thank you all for the suggestions. Here is what I did. I cut the chocolate down alot but not out yet, I changed the Chex with Cream of Rice and for lunch I made a brown rice dish for the week with chicken and well cooked green beans and carrots. This is what happened next: the D continued as before. Yesterday I got up at 4:00 am because I had to be at work at 7:30 am, I always get up extra early because I know the D will come. Well it came and I had to take the dreaded immodium to get out of the house. I was feeling very fatigued yesterday, more so than usual. Around 9:45 am, I was taking care of a customer and said to no one in particular, I think I better sit down. I was so dizzy, I was shaking, my legs were like rubber and I was told that I turned as white as a ghost, however, I didn't pass out. I don't know if I was dehydrated, my low blood pressure bottomed out or if my blood sugar plunged. My coworkers pumped alot of water and some sugary items into me. I wound up staying at work, even though I didn't feel good because I had no way to get home, they wouldn't let me drive. At closing time I felt a little better and managed to drive home without incident. I called my Gi and I have an appointment today, that is the fastest I ever got an appointment with him. I went to bed extra early because I was still so fatigued.
I feel better today, still very fatigued but I'm going to work. I have a bunch of snacks (gluten free of course) and my rice & chicken for lunch and Gatorade. I did not have any D today but I think it is because of the immodium I had to take yesterday. That usually happens.
I hope I fare better today. I will post the outcome of my GI visit. I have a list of the meds he has given me that I have not been able to take so he doesn't try to give them to me again.
Again, thank you for listening.
Susanne