Today was one terrible day. I am so discouraged right now. I got up@ 730 . Immediate liquid D. I took one Imodium and tried to go back to sleep. That was unsuccessful. Two more rounds of WD. I started drinking Gatorade. I forced down a gluten free breakfast bar took three Endocort and two Imodium. And yet another round of total WD. Two more Imodium and a plain grilled chicken breast. I tried for a baked potatoe but that made me feel sick.
Yesterday all meals were bland and gluten dairy and egg free. Rice Chex with Rice milk. Gluten free ham on gluten free bread. Baked fresh chicken plain white rice and applesauce (gluten free).
I stopped taking my vitamins and B12 thinking their might be something there that I might be causing a reaction.
I am going to take two more Imoduim tonight. If that doesn't slow things down I will take a total of eight on Thurs. Thats the max. Then I have to call the Doc for another plan.
I am on meds. I have done dietary changes I really don't know what else to do. Yes and I have prayed.
Thanks for your ears.
hugs
Camie
Total flare 9mg Endocort 5 imodium and the day has not ended
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Camie,
Sooo sorry you are having such a rough time. The GF really takes time to take affect by the time it gets all your gluten toxens out of your body. Stay with the GF and eat light stuff. Maybe some soup broth for a while will help. It took me about 4 or 5 weeks of being GF before I had no more WD. However that was also the time I started the entocort so I dont know for a fact if it was finally the GF or the GF and entocort combination because I made that complete turn right away once I started entocort. Try try try to stay stress free as well because I know the stress doesn't help at all. It's hard to do when the WD is going on and trying to work and manage life in general. I literally shut down my entire life.....including retiring so that I could get a handle on my health issues. Please remember we are all here to listen and we have all been there where you are. Wishing you the best and keep remembering it will get better.
Sooo sorry you are having such a rough time. The GF really takes time to take affect by the time it gets all your gluten toxens out of your body. Stay with the GF and eat light stuff. Maybe some soup broth for a while will help. It took me about 4 or 5 weeks of being GF before I had no more WD. However that was also the time I started the entocort so I dont know for a fact if it was finally the GF or the GF and entocort combination because I made that complete turn right away once I started entocort. Try try try to stay stress free as well because I know the stress doesn't help at all. It's hard to do when the WD is going on and trying to work and manage life in general. I literally shut down my entire life.....including retiring so that I could get a handle on my health issues. Please remember we are all here to listen and we have all been there where you are. Wishing you the best and keep remembering it will get better.
Cathy
Thanks for the input Kathy,
I was actually doing quite well on the Endocort. Things were getting "normal" or should I say better. Take the world normal with a grain of salt. Then I had this relapse. I attribute this to trying to taper off the Endocort as presribed by my MD. Since then it has been all downhill. Back up to full dose of Endocort plus Imoduim. I am sure many have been at the stage of just being so tired of this disease. I am exhausted by the disease and exhausted that I can't seem to control it despite my best efforts. I am between a rock and a hard place.
I am so full of Imoduim.
Again thanks for the ears.
:)
Camie
I was actually doing quite well on the Endocort. Things were getting "normal" or should I say better. Take the world normal with a grain of salt. Then I had this relapse. I attribute this to trying to taper off the Endocort as presribed by my MD. Since then it has been all downhill. Back up to full dose of Endocort plus Imoduim. I am sure many have been at the stage of just being so tired of this disease. I am exhausted by the disease and exhausted that I can't seem to control it despite my best efforts. I am between a rock and a hard place.
I am so full of Imoduim.
Again thanks for the ears.
:)
Camie
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
sorry you are having a bad week
quite a few of us, once we eliminated a major trigger, anytime in a 3 - 8 week period we had symptoms again and it would turn out to be another ingredient had become the major trigger.
for me i went through this cycle a few times as i confirmed Gluten, Yeast, Dairy, Soy, Sulphites etc as triggers.
you stop one ingredient, start to feel good and then whammo, symptoms return.
also, it takes quite a bit of time for the gut to heal, (for most it is months not weeks) and stress can be a trigger.
take a few deep breathes, you are not really between a rock and hard place, you have a great bunch of people giving a wealth of knowledge and support.
i am not saying that making changes and adjusting to living with this disease is easy. it is just that not many get an easy ride into the world of MC management.
once you figure out what works (and what to avoid) the fatigue will go away. (for the majority) bad weeks will turn into the occaisional bad day, will turn into rare bad days.
quite a few of us, once we eliminated a major trigger, anytime in a 3 - 8 week period we had symptoms again and it would turn out to be another ingredient had become the major trigger.
for me i went through this cycle a few times as i confirmed Gluten, Yeast, Dairy, Soy, Sulphites etc as triggers.
you stop one ingredient, start to feel good and then whammo, symptoms return.
also, it takes quite a bit of time for the gut to heal, (for most it is months not weeks) and stress can be a trigger.
take a few deep breathes, you are not really between a rock and hard place, you have a great bunch of people giving a wealth of knowledge and support.
i am not saying that making changes and adjusting to living with this disease is easy. it is just that not many get an easy ride into the world of MC management.
once you figure out what works (and what to avoid) the fatigue will go away. (for the majority) bad weeks will turn into the occaisional bad day, will turn into rare bad days.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Camie,
So sorry you are having such a tough time but totally agree with what Gabe posted. It does take time. Also, I would suggest a bit "lighter" diet while you are going through this. What you posted that you hate would have been way too heavy for me.
Love, Maggie
So sorry you are having such a tough time but totally agree with what Gabe posted. It does take time. Also, I would suggest a bit "lighter" diet while you are going through this. What you posted that you hate would have been way too heavy for me.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Sorry to hear things aren't going well. You may want to try eliminating some of the prepared GF foods. I found that I'm not able to use prepared GF mixes of GF bread right now- it just doesn't sit right with me. Most likely there are other ingredients that I'm sensitive to but it was heartbreaking to be excited to buy something "normal" like cornbread mix, brownies, bread for a sandwich only to find out I felt sick after eating it and spend a whole lot of money that ended up in the compost bin since no one else in the house will touch my food. I've found everyone's advise to stick with whole foods or foods with only a few ingredients to be helpful.
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I agree. I have found that sticking to whole single ingredient foods is the best way to go. That way you know exactly what you are eating. I still eat mostly ground lamb or pork, bone broth (from lamb or pork bones), almond butter, well cooked greens (mostly homemade kale chips) and a few blueberries. I have added a few other foods in there but this is the backbone of my diet. When I started out 6 months ago I ate ground meat and broth exclusively for a few weeks. The other ingredient that I have found necessary and perhaps harder to come by, is patience. I have to remind myself frequently that healing is a slow process. Hope you see some improvement soon.DebE13 wrote:Sorry to hear things aren't going well. You may want to try eliminating some of the prepared GF foods. I found that I'm not able to use prepared GF mixes of GF bread right now- it just doesn't sit right with me. Most likely there are other ingredients that I'm sensitive to but it was heartbreaking to be excited to buy something "normal" like cornbread mix, brownies, bread for a sandwich only to find out I felt sick after eating it and spend a whole lot of money that ended up in the compost bin since no one else in the house will touch my food. I've found everyone's advise to stick with whole foods or foods with only a few ingredients to be helpful.
Jean
Once again thank you for your wonderful support. Another new day. I woke up today and thought I have to eat but food is really an enemy these days. I wish I didn't have to eat. I have lost so much muscle mass. I just keep pulling my belt one notch tighter to keep my pants up. I don't even remember when my weight was this low......maybe highschool? I was sad, had lunch (lol) with a friend and she said you look like someone that has a bowel disease. Sigh.
Anyway it is a new day, Fresh start going to soldier on!
hugs Camie
Anyway it is a new day, Fresh start going to soldier on!
hugs Camie
Camie, when I tapered off Entocort I found I was sensitive to eggs, which I had eaten the entire time I was on Entocort. Obviously Entocort was masking this sensitivity. So maybe Entocort is masking something for you too. You may want to take a good look at soy and make sure there is no soy in your foods. For me (and many others) soy is a huge irritation to our systems. I also tried GF bread mixes and found I didn't feel well afterward. I think it was a soy additive.
Like everyone else said, stick to whole foods. Eating simply is key.
Be careful too with the Gatorade. I drank it when I was sick and on meds but later on I found it was acidic for me and it has lots of sugar which might be too rich for your upset system. Best to thin it with water. Avoid artificial sweeteners too. I too worried about taking vitamins, and in a flare I stopped them too, but looking back I'm thinking they weren't as problematic as I feared, as long as they don't have gluten, soy, etc, etc. Last week I did drink some Pedialyte for electrolytes when I came down with a stomach virus that was going around the school I work in . It definitely has to be diluted with water, but it has less sugar.
When I was in the stage you are in, I became (begrudgingly) a good chicken soup maker. With well cooked carrots, I'd throw in some white rice, a little sage and rosemary so flavor-- I survived on that for weeks really. It gets protein in you and gives your gut a rest.
Having said all that, I'm sorry you've flared again. I know how distressing that is. Do contact your doctor if you feel you can't keep your hydration up. There maybe other options too for the diarrhea. Early on I became so dehydrated that I had to go to the Dr and get an IV. It did help and they added a med for nausea because at that point I couldn't keep fluids down.
Rest, be patient and let us know how you are doing.
Carol
Like everyone else said, stick to whole foods. Eating simply is key.
Be careful too with the Gatorade. I drank it when I was sick and on meds but later on I found it was acidic for me and it has lots of sugar which might be too rich for your upset system. Best to thin it with water. Avoid artificial sweeteners too. I too worried about taking vitamins, and in a flare I stopped them too, but looking back I'm thinking they weren't as problematic as I feared, as long as they don't have gluten, soy, etc, etc. Last week I did drink some Pedialyte for electrolytes when I came down with a stomach virus that was going around the school I work in . It definitely has to be diluted with water, but it has less sugar.
When I was in the stage you are in, I became (begrudgingly) a good chicken soup maker. With well cooked carrots, I'd throw in some white rice, a little sage and rosemary so flavor-- I survived on that for weeks really. It gets protein in you and gives your gut a rest.
Having said all that, I'm sorry you've flared again. I know how distressing that is. Do contact your doctor if you feel you can't keep your hydration up. There maybe other options too for the diarrhea. Early on I became so dehydrated that I had to go to the Dr and get an IV. It did help and they added a med for nausea because at that point I couldn't keep fluids down.
Rest, be patient and let us know how you are doing.
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 Camie,
So sorry you are having difficulties right now. Maybe it takes a few weeks for the higher dosage of Entocort to kick in?
I agree with the others....only whole foods for now. Also, in regards to the Gatorade. I often drank it when I felt myself getting weak only to have it exacerbate my D.....because of all the sugar in it. I know someone on this forum posted an electrolyte drink you can make yourself but I don't remember the recipe. I think it was just water, salt and baking soda but don't remember exactly. I have thought about trying the Pedialyte as well since it has less sugar?
BTW, I now weigh what I weighed in high school....very thin. Not happy! We'll get through this! Please keep us updated and I'm praying you get some relief soon.
Take care,
Terri
So sorry you are having difficulties right now. Maybe it takes a few weeks for the higher dosage of Entocort to kick in?
I agree with the others....only whole foods for now. Also, in regards to the Gatorade. I often drank it when I felt myself getting weak only to have it exacerbate my D.....because of all the sugar in it. I know someone on this forum posted an electrolyte drink you can make yourself but I don't remember the recipe. I think it was just water, salt and baking soda but don't remember exactly. I have thought about trying the Pedialyte as well since it has less sugar?
BTW, I now weigh what I weighed in high school....very thin. Not happy! We'll get through this! Please keep us updated and I'm praying you get some relief soon.
Take care,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Just one more thing. I've heard that some of us cannot tolerate GF Rice Chex maybe because of the BHT preservative in it. Also, some of the milk substitutes contain some type of gum in it that can be problematic early on. My almond milk has locust bean gum....not sure if I'm reacting to that since on Pepto..but will find out soon enough. I haven't tried the Rice milk. Any gums in that? Carrageenan is another bad one. I hear some react to Xanthum gum as well. I just heard about this and believe me I was not happy. I don't want to give up my Rice Chex with Almond milk. I would try the soup for breakfast, lunch and dinner for a week and then slowly add in another food item. I know it's hard especially when you need to gain weight. I should take my own advice and probably will have to once I get off Pepto. By then I'll be asking you for some advice!
Terri
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
You poor thing. My heart is breaking for you.
It doesn't seem like the immodium is working at all. Why take it then? have you tried the Pepto protocol? You have to remember that what works for one of us may not work for another.
I agree with everyone on the processed foods and Gatorade. Not a good idea. I couldn't tolerate GF bread and baked goods until after 7 months of healing.
You've been eating a lot of chicken. Maybe chicken is not good for you. I can eat it, but when I need to "make things more solid", beef does it. My system loves beef and rice. Weird.... and against what I believed was good for me. But, it works. Maybe try beef and beef broth and see how that goes.
Drink LOTS OF WATER with a little salt sprinkled in to stay hydrated. Dehydration is not only dangerous, it's what gives you that "IBD look" ( as your friend said).
Keep us posted . I'm sending positive thoughts your way
Leah
It doesn't seem like the immodium is working at all. Why take it then? have you tried the Pepto protocol? You have to remember that what works for one of us may not work for another.
I agree with everyone on the processed foods and Gatorade. Not a good idea. I couldn't tolerate GF bread and baked goods until after 7 months of healing.
You've been eating a lot of chicken. Maybe chicken is not good for you. I can eat it, but when I need to "make things more solid", beef does it. My system loves beef and rice. Weird.... and against what I believed was good for me. But, it works. Maybe try beef and beef broth and see how that goes.
Drink LOTS OF WATER with a little salt sprinkled in to stay hydrated. Dehydration is not only dangerous, it's what gives you that "IBD look" ( as your friend said).
Keep us posted . I'm sending positive thoughts your way
Leah