"He ain't heavy....he is my brother"
Thank you friends for all the supportive comments and the caring notes. Not everyone understands what we go thru on a day to day basis.........but we understand. Thank you again.
Can I say this was a sh##y day. No pun intended.
Today was a day of tears and realization. The aha moment.
All my life, You are sick , go to the doctor............tests pills and then you are better. Followed the same old plan. This time it is different. Tests pills.............a relapse a flare.
I cried this morning......... I am not sure who posted about eating foods you could count on one hand. Lucky me I used two hands I had six foods that I ate and then this am Explosive D.
I wish I didn't have to eat.
I am on a low right now.............doing errands on an empty stomach........... even afriad to sip water.............. I actually thought today...............it might be better to have cancer............they can cut the diseased parts out.
OK rant is over,,,,,,,,,,,just like everyone else tired of being sick
Endocort weaning :( stress... and I need a friend right now
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi there Camie...rant on... It does help and this is the place for it.
It seems most of us have gone through what you are dealing with. Besides sending you the best of wishes and to say you are NOT lazy....you are sick, certainly we all send our encouragement and the best of wishes.
I know in your other note that you mentioned that you are not GF yet and are trying. I fully believe that you need to try 100% GF diet for REAL for at least 6 weeks to understand what it is like to feel good again.
For me what I learned from the others here there is a basic set of 'rules' that will give you the best chance to get your life back and they are:
Take your meds as prescribed
NO gluten at all...not even a small amount
NO soy or soy containing products
You are already dairy free so that covers that issue
NO raw fruits or vegetables, that includes the juicer, even 'juiced' the raw fiber is still there.
NO citrus juices....try apple or white grape, tea etc...
So what can you eat...quite a bit...well cooked veggies, various meats, rice, GF breads, GF cereals....once you get the hang of it, it's not bad at all. I would avoid for now restaurants and packaged snack foods, those can be a real unpredictable land mine. Think of simple, tasty whole foods. Eventually you will be able to head out to restaurants that have experience serving customers with food intolerances like gluten. I find one of my local favorites is Outback Steakhouse, they have been great and so far I have had no problems there. There are many others across the country and when things have settled down you will be able to enjoy them.
Most of these items are not forever, just until your GI system has had a chance to settle down and heal. You have twins I think you said....and just like when feeding an infant you have treat your system like a newborn for a while. Think easy to digest non irritating foods, think well cooked mushy veggies for a while. No salads...for a while
For me this was the only way to get off of the Entocort and it was this amazing group of folks here who taught me this, not my GI doctor. There is literally hundreds of years of accumulated knowledge with all of the members here vast real world experiences.
The Entocort will help settle things down, but it will NOT take away the need to avoid gluten and most likely soy. After a number of months have passed and you are feeling better you can try soy products again but initially to be safe and to allow you to feel better sooner it would be best to play it safe. It seems that it takes even with Entocort, quite a while to get the GI systems inflammation to subside.
After things have settled down and you are off the Entocort, you may want to look into food tolerance testing with either Enterolab or Signet Diagnostics MRT testing. This will help you understand your unique set of intolerances that may or may not include soy for instance.
As a bit of a story, I followed the 'rules' above for about 6 months and was feeling great, yet every so often something I ate as I was expanding my diet caused me to flare up for about a week. I had the MRT testing and it showed I reacted strongly to Tilapia....I love fish and thought that would be safe...nope it was a hidden landline for me. The testing has saved me a lot of grief I'm sure.
Hang in there and be sure to help yourself by pursuing the dietary part of this.
Take care
It seems most of us have gone through what you are dealing with. Besides sending you the best of wishes and to say you are NOT lazy....you are sick, certainly we all send our encouragement and the best of wishes.
I know in your other note that you mentioned that you are not GF yet and are trying. I fully believe that you need to try 100% GF diet for REAL for at least 6 weeks to understand what it is like to feel good again.
For me what I learned from the others here there is a basic set of 'rules' that will give you the best chance to get your life back and they are:
Take your meds as prescribed
NO gluten at all...not even a small amount
NO soy or soy containing products
You are already dairy free so that covers that issue
NO raw fruits or vegetables, that includes the juicer, even 'juiced' the raw fiber is still there.
NO citrus juices....try apple or white grape, tea etc...
So what can you eat...quite a bit...well cooked veggies, various meats, rice, GF breads, GF cereals....once you get the hang of it, it's not bad at all. I would avoid for now restaurants and packaged snack foods, those can be a real unpredictable land mine. Think of simple, tasty whole foods. Eventually you will be able to head out to restaurants that have experience serving customers with food intolerances like gluten. I find one of my local favorites is Outback Steakhouse, they have been great and so far I have had no problems there. There are many others across the country and when things have settled down you will be able to enjoy them.
Most of these items are not forever, just until your GI system has had a chance to settle down and heal. You have twins I think you said....and just like when feeding an infant you have treat your system like a newborn for a while. Think easy to digest non irritating foods, think well cooked mushy veggies for a while. No salads...for a while
For me this was the only way to get off of the Entocort and it was this amazing group of folks here who taught me this, not my GI doctor. There is literally hundreds of years of accumulated knowledge with all of the members here vast real world experiences.
The Entocort will help settle things down, but it will NOT take away the need to avoid gluten and most likely soy. After a number of months have passed and you are feeling better you can try soy products again but initially to be safe and to allow you to feel better sooner it would be best to play it safe. It seems that it takes even with Entocort, quite a while to get the GI systems inflammation to subside.
After things have settled down and you are off the Entocort, you may want to look into food tolerance testing with either Enterolab or Signet Diagnostics MRT testing. This will help you understand your unique set of intolerances that may or may not include soy for instance.
As a bit of a story, I followed the 'rules' above for about 6 months and was feeling great, yet every so often something I ate as I was expanding my diet caused me to flare up for about a week. I had the MRT testing and it showed I reacted strongly to Tilapia....I love fish and thought that would be safe...nope it was a hidden landline for me. The testing has saved me a lot of grief I'm sure.
Hang in there and be sure to help yourself by pursuing the dietary part of this.
Take care
Joe
sending you my thoughts and sympathy, I tried to hide how bad I felt from my hubby for a whole summer but eventually broke down and told him how it REALLY was, he was quite shocked and said he had no idea as I had been putting everyone else first, hiding the "shameful" accidents etc, he took on board all I said and from then on has been kind, understanding etc. Dont come off the endocort too quickly, getting down to 6mg is fairly easy, in my opinion you should stay there till you get your strength back somewhat and gain a little weight, then drop to 3mg, we have all been as ill as you and it does get better, we have slip ups, last week I had a flare due to work stress but I am through it now, had got down to one 3mg endocort a week !!!!! now back to one a day but know I will get off them eventually, I dont think anyone here is the same as they were before this disease came along but I beleive I personally have become a better human being because of it, I think I am kinder, I appreciate everything more<I have learned to take one day at a time but mostly have learned that my own health is paramount and if the cooker isnt perfect so what! we dont eat off, we cook on it. Right now look after you, big hugs Beni
Carrie,
It is so horrible to feel the way you are feeling these days. I do remember what that was like. I was on Entocort about seven months and during that time went gluten, dairy, egg, and soy free. Along with not being able to eat anything raw. I can't even imagine going through what you are and trying to take care of a family. Don't be hard on yourself, it's not easy and I am sure you are doing the best you can.
During that time I drank coconut water which helped with nutrients. I was also not eating much of anything.
I just wanted to send hugs to you and hope you start feeling better soon.
Nancy
It is so horrible to feel the way you are feeling these days. I do remember what that was like. I was on Entocort about seven months and during that time went gluten, dairy, egg, and soy free. Along with not being able to eat anything raw. I can't even imagine going through what you are and trying to take care of a family. Don't be hard on yourself, it's not easy and I am sure you are doing the best you can.
During that time I drank coconut water which helped with nutrients. I was also not eating much of anything.
I just wanted to send hugs to you and hope you start feeling better soon.
Nancy
Camie,
Like everyone else I recall those days too. Sometimes my biggest triumph might be getting out of bed and doing 1 load of laundry plus cooking my food. Another day it might be to the grocery store and back. I was living on white rice, chicken broth, baked chicken, green beans, mashed potatoes, and Rice Chex and dropping 2-3 pounds a week just laying around. It took me awhile to accept that I now had a chronic condition to live with. Like it or not one of us was going to be in charge. I'm happy to say I think I'm wrestling it into submission. Once I accepted my situation, it seemed my family did too, and it became easier for them to support me.
Of course, I didn't have little ones to take care of. I think you've picked your priorities well-- you take care of your health and your children. Everything thing else can take a back seat. You need your energy to heal.
It may be hard for your husband to see you struggle with being sick... he may not know what to say. In my situation I finally learned there wasn't much to be gained by pretending I was alright. I was being dishonest with my husband, daughter and my friends who were more than willing to step in and help, once I got out of my own way.
I hope things are looking up for you today. Battle back.
Carol
Like everyone else I recall those days too. Sometimes my biggest triumph might be getting out of bed and doing 1 load of laundry plus cooking my food. Another day it might be to the grocery store and back. I was living on white rice, chicken broth, baked chicken, green beans, mashed potatoes, and Rice Chex and dropping 2-3 pounds a week just laying around. It took me awhile to accept that I now had a chronic condition to live with. Like it or not one of us was going to be in charge. I'm happy to say I think I'm wrestling it into submission. Once I accepted my situation, it seemed my family did too, and it became easier for them to support me.
Of course, I didn't have little ones to take care of. I think you've picked your priorities well-- you take care of your health and your children. Everything thing else can take a back seat. You need your energy to heal.
It may be hard for your husband to see you struggle with being sick... he may not know what to say. In my situation I finally learned there wasn't much to be gained by pretending I was alright. I was being dishonest with my husband, daughter and my friends who were more than willing to step in and help, once I got out of my own way.
I hope things are looking up for you today. Battle back.
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
Wow I sure hope you feel the hugs coming from this group. Stay strong and take care of yourself first. I unfortunately am still on my 1st 6 weeks of ENtocort so I have no insight on weaning off it but the experience here with these folks will give you some hope. Take care of yourself and kids.........everyone else will have to deal with it. That's how my work looked at me when I was having my worst times ever. You could tell they thought.....oh how bad can it be?? So I retired!!!! Stay strong!!!!
Cathy
once again, thank you for all of the supportive and thoughtful comments. I don't feel like I am stuck at sea rowing alone....looking for the shore. I have people in my boat now. I only hope that someday I will be able to give support and offer insight to others in this same situation.
I had a MD rant that I posted today. I called them Wed and I finally got a call back on Friday @4:45. I can only wish on the GI docs and the PCPs that they would have a flare of MC for a month. I wonder what they would do?
Endocort 9mg.........now Imodium 2 per day up to 8 until sypmtoms subside.
Send me hugs.............just went to Whole Foods and purchased $40.00 of gluten free products.
bought a juicer.
cooked a vat of bone broth.
I am armed for battle
:)
I had a MD rant that I posted today. I called them Wed and I finally got a call back on Friday @4:45. I can only wish on the GI docs and the PCPs that they would have a flare of MC for a month. I wonder what they would do?
Endocort 9mg.........now Imodium 2 per day up to 8 until sypmtoms subside.
Send me hugs.............just went to Whole Foods and purchased $40.00 of gluten free products.
bought a juicer.
cooked a vat of bone broth.
I am armed for battle
:)
Keep your receipt. You have to learn which products are good for you. I can't have almonds, corn or rice, so most weren't good for me. I had to return them.
I have a vat of broth on the stove to finish preparing tomorrow.
We have all been in the ocean without the boat. It makes all the difference when you have these great people to help you row,
,
I have a vat of broth on the stove to finish preparing tomorrow.
We have all been in the ocean without the boat. It makes all the difference when you have these great people to help you row,
,
