Please help me, I'm struggling to want to continue….
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Martha,
I'm sorry you are feeling so distressed but I certainly understand it. When I had my biggest flare that lead to a diagnosis I had to eat no sugar, no caffeine, low fat, low (or no) fiber, no raw vegetables. Think "eat simply"-- baked chicken with carrots or a lean roast with potatoes.. you get the idea. Go completely gluten free and dairy free. Be aware that some of us..me especially... are also reactive to soy. I finally stopped gurgling when I eliminated soy.
Did I read that you are on probiotics? Probiotics very rarely work for us. For most of us it creates more problems. You don't need them-- your goal is to reduce inflammation so your body can work correctly. Probiotics won't help you there. Diet changes will. Some people (including me) also take Claritin or Allegra or some other antihistamine to help fight inflammatory reactions. If my allergies are amped up, I'll add Benadryl at night. If you have GERD or nausea, an H2 blocker antihistamine, like Zantac will help.
Hang in there. You are not alone and most of us have been very, very, sick in the beginning but with the knowledge and support here we gradually get our lives back.
Carol
I'm sorry you are feeling so distressed but I certainly understand it. When I had my biggest flare that lead to a diagnosis I had to eat no sugar, no caffeine, low fat, low (or no) fiber, no raw vegetables. Think "eat simply"-- baked chicken with carrots or a lean roast with potatoes.. you get the idea. Go completely gluten free and dairy free. Be aware that some of us..me especially... are also reactive to soy. I finally stopped gurgling when I eliminated soy.
Did I read that you are on probiotics? Probiotics very rarely work for us. For most of us it creates more problems. You don't need them-- your goal is to reduce inflammation so your body can work correctly. Probiotics won't help you there. Diet changes will. Some people (including me) also take Claritin or Allegra or some other antihistamine to help fight inflammatory reactions. If my allergies are amped up, I'll add Benadryl at night. If you have GERD or nausea, an H2 blocker antihistamine, like Zantac will help.
Hang in there. You are not alone and most of us have been very, very, sick in the beginning but with the knowledge and support here we gradually get our lives 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
I started here April 1st, and have blood work booked for tomorrow to check for Selective IgA deficiency, vit.D,thyroid,hormones&blood sugar. Sel IgA def. could change whether Enterolab tests will be accurate. I am still awaiting the book I ordered thru amazon. Hopefully it arrives soon.
I try to tackle one day at a time. I have tried some pepto bismol but found it made my tinnitus worse.
We all have our own individual MC Journey. There is a lot of info in previous topics throughout this entire site worth reviewing. We are all here for each other.
Rest,relax & know that the healing starts here.
I wish you well in your quest for health.
I try to tackle one day at a time. I have tried some pepto bismol but found it made my tinnitus worse.
We all have our own individual MC Journey. There is a lot of info in previous topics throughout this entire site worth reviewing. We are all here for each other.
Rest,relax & know that the healing starts here.
I wish you well in your quest for health.
Diabetic DX June 2012
Diverticulosis/ MC DX Feb.2014
I am thankful for my struggle because without it I wouldn't have stumbled across my strength.
What are you willing to let go of so you can live the life you know you deserve?
Diverticulosis/ MC DX Feb.2014
I am thankful for my struggle because without it I wouldn't have stumbled across my strength.
What are you willing to let go of so you can live the life you know you deserve?
Welcome Martha.
I know this is so scary and difficult, but try to stay calm because stress can make our symptoms worse. The mucus is pretty normal for active MC. You may just have too much fiber in your diet ( i am a certified personal trainer/nutrition specialist) . When it come to vegetables, you are best off right now with carrots, squashes, and maybe green beans. Sweet potato works well for most of us. White rice is gentle ( but some of us have to give up all grains). Many of us can eat potato, but others can't do night shades. Try to eat fresh foods only and high protein. The protein helps heal.
If Entocort isn't right for you, maybe the Pepto protocol will work ( while you work on the diet). It's up to eight chewables a day for 2 months. It works for some. Not all. Be prepared for your BMs to be black if you try this.
Staying hydrated is very important. Keep a food/bm journal. It can be very helpful.
OTC antihistmines help many of us ( including me). If it turns out that they help you, then you should look at eliminating high histamine foods. Mushrooms and spinach can be a problem.
Buying Tex's book is a good idea. It really helps in understanding this disease.
Please know that this can get better. It takes a lot of detective work, cooking, planning, and patience…. but all your hard work will pay off. After 6 months, i was down to one BM a day. After a year, I was able to add some things back into my diet. Now, two years later, I am gluten, soy, and dairy free, but I live a normal life otherwise. There is hope!
Ask anything. Take a deep breath. We are all here for you :)
leah
I know this is so scary and difficult, but try to stay calm because stress can make our symptoms worse. The mucus is pretty normal for active MC. You may just have too much fiber in your diet ( i am a certified personal trainer/nutrition specialist) . When it come to vegetables, you are best off right now with carrots, squashes, and maybe green beans. Sweet potato works well for most of us. White rice is gentle ( but some of us have to give up all grains). Many of us can eat potato, but others can't do night shades. Try to eat fresh foods only and high protein. The protein helps heal.
If Entocort isn't right for you, maybe the Pepto protocol will work ( while you work on the diet). It's up to eight chewables a day for 2 months. It works for some. Not all. Be prepared for your BMs to be black if you try this.
Staying hydrated is very important. Keep a food/bm journal. It can be very helpful.
OTC antihistmines help many of us ( including me). If it turns out that they help you, then you should look at eliminating high histamine foods. Mushrooms and spinach can be a problem.
Buying Tex's book is a good idea. It really helps in understanding this disease.
Please know that this can get better. It takes a lot of detective work, cooking, planning, and patience…. but all your hard work will pay off. After 6 months, i was down to one BM a day. After a year, I was able to add some things back into my diet. Now, two years later, I am gluten, soy, and dairy free, but I live a normal life otherwise. There is hope!
Ask anything. Take a deep breath. We are all here for you :)
leah
Hi Martha,
I had a lot of brain issues while I was on Entocort that I thought would be better on the lower doses but I still felt lousy on one every third day. I knew the last day I took Entocort was the last day that I would ever take Entocort and I have never knowingly consumed G, D, or S. The extreme Entocort side effects keep me on a healthy diet path every day of GF, DF, and SF. If you think you still need the help of pharmaceuticals folks have found relief using the above list that Gabe listed.
Brandy
I had a lot of brain issues while I was on Entocort that I thought would be better on the lower doses but I still felt lousy on one every third day. I knew the last day I took Entocort was the last day that I would ever take Entocort and I have never knowingly consumed G, D, or S. The extreme Entocort side effects keep me on a healthy diet path every day of GF, DF, and SF. If you think you still need the help of pharmaceuticals folks have found relief using the above list that Gabe listed.
Brandy
Ok sigh…. just want to thank everyone for the kindness and support. Was laughing today because I actually had a small slim firm movement. Nice to laugh. Not sure why things shifted butt :) I need to keep better food supplement/journal. Called mom to inform her of my form, such strange joy, gotta know she loves that But I will take it! Did the MRT blood testing today and looking forward to checking out the entrolab testing. Is bone broth a good idea to heal the gut? I keep reading that it does, but wonder if others have had success with it. Hope to some day figure out my triggers.
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Woo hoo!!! Progress !
Definitely worthy of a happy dance when you poop starts to resemble normal.
Bone broth worked really well for me for healing and I still have it/use it for cooking 4+ years later.
Start simple with chicken. Or beef. Make sure you don't react to that item.
For me in Aus, lamb is half the cost of beef, so my bone broth is lamb and chicken.
Lamb also freezes and reheats better, so my stews are a mix of lamb, veal and pork
Only thing I add is Himalayan salt.
Bone broth has about 60-70% of the amino acids our bodies need.
plus natural source of gelatine and animal fats
Take your time, the journey is about progress..... Not perfection.
Definitely worthy of a happy dance when you poop starts to resemble normal.
Bone broth worked really well for me for healing and I still have it/use it for cooking 4+ years later.
Start simple with chicken. Or beef. Make sure you don't react to that item.
For me in Aus, lamb is half the cost of beef, so my bone broth is lamb and chicken.
Lamb also freezes and reheats better, so my stews are a mix of lamb, veal and pork
Only thing I add is Himalayan salt.
Bone broth has about 60-70% of the amino acids our bodies need.
plus natural source of gelatine and animal fats
Take your time, the journey is about progress..... Not perfection.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
- MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Martha,
Hang in there...it does get better. I was on Endocort the first time I was diagnosed with CC and it worked like a charm. I was healthy for 3 years. Then I started with flares. Endocort worked again but the flare came back in 3 months. Then the stuggle began. Endocort was not working as well and I kept getting sick. Finally, found this forum, had lab testing and cut out gluten, soy, and cassein. Struggled for another 3 months, tried some probiotics and health food supplements (worked briefly) and then tried Questran and Elavil. I think the combo of meds, diet change and time finally worked and I have been been much better. I read labels, try not to overeat, watch my sugar intake and eliminate anything with soy, cassein, and gluten. I try to get enough sleep and keep stress at a minimum....pretty talk order, but it has worked. I struggled with patience and fear kept creeping in. I know that didn't help, so I tried to work with that...meditation and exercise. I am down to 1/2 pkg of Questran every 3-4 days and that seems to be working for me now. The people on this forum were so helpful and it was a "safe" place to go when I was discouraged. Good luck on your journey...
Jean
Hang in there...it does get better. I was on Endocort the first time I was diagnosed with CC and it worked like a charm. I was healthy for 3 years. Then I started with flares. Endocort worked again but the flare came back in 3 months. Then the stuggle began. Endocort was not working as well and I kept getting sick. Finally, found this forum, had lab testing and cut out gluten, soy, and cassein. Struggled for another 3 months, tried some probiotics and health food supplements (worked briefly) and then tried Questran and Elavil. I think the combo of meds, diet change and time finally worked and I have been been much better. I read labels, try not to overeat, watch my sugar intake and eliminate anything with soy, cassein, and gluten. I try to get enough sleep and keep stress at a minimum....pretty talk order, but it has worked. I struggled with patience and fear kept creeping in. I know that didn't help, so I tried to work with that...meditation and exercise. I am down to 1/2 pkg of Questran every 3-4 days and that seems to be working for me now. The people on this forum were so helpful and it was a "safe" place to go when I was discouraged. Good luck on your journey...
Jean
Everything will be ok in the end, if it's not ok, it's not the end.
Martha,
I forgot to mention I spent about $3000.00 on food allergy testing that my GI doc wanted done. Ended up being useless and not covered by my United Healthcare.
Suggest invest in Tex's book, see upper right hand corner, @$25.00, invest in Enterolab stool tests @ $400.00 and will tell you if you need to be GF, DF, SF or EF.
And, finally some people if they are still struggling invest in MRT testing, @$600.00. I didn't have to do that one. Just a thought. Brandy
I forgot to mention I spent about $3000.00 on food allergy testing that my GI doc wanted done. Ended up being useless and not covered by my United Healthcare.
Suggest invest in Tex's book, see upper right hand corner, @$25.00, invest in Enterolab stool tests @ $400.00 and will tell you if you need to be GF, DF, SF or EF.
And, finally some people if they are still struggling invest in MRT testing, @$600.00. I didn't have to do that one. Just a thought. Brandy
Welcome, Martha, from another Martha.
I don't have any insights to add to what has already been said, but I do encourage you to totally eliminate gluten, dairy, and soy from your diet. And the Enterolab tests--the best $400 I spent! My insurance wouldn't cover it, even though they didn't blink an eye at the more than $600 per month for Entocort (which worked very well for me). But just having that assurance that I really did need to cut out those foods was helpful emotionally.
Love and hugs,
Martha
I don't have any insights to add to what has already been said, but I do encourage you to totally eliminate gluten, dairy, and soy from your diet. And the Enterolab tests--the best $400 I spent! My insurance wouldn't cover it, even though they didn't blink an eye at the more than $600 per month for Entocort (which worked very well for me). But just having that assurance that I really did need to cut out those foods was helpful emotionally.
Love and hugs,
Martha
Martha
Hi Martha-
Don't be scared about mucus stools as it is very common as fats are not digested properly causing fatty malabsorption. You might see oily, mucus, or floaty stools among other things. You did not say whether you were eating gluten-free or not. That's the biggest piece of advice I would give you. Remove gluten and processed foods from your life. You survived a brain tumor, and I'm sure you will get your MC under control. It takes some time, research and patience. Tex's book (above, top right hand corner) has a wealth of information and I recommend it.
Best,
Cory
Don't be scared about mucus stools as it is very common as fats are not digested properly causing fatty malabsorption. You might see oily, mucus, or floaty stools among other things. You did not say whether you were eating gluten-free or not. That's the biggest piece of advice I would give you. Remove gluten and processed foods from your life. You survived a brain tumor, and I'm sure you will get your MC under control. It takes some time, research and patience. Tex's book (above, top right hand corner) has a wealth of information and I recommend it.
Best,
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)