I have posted so many times over the years seeking your good advice, that tonight I am just going to complain to all who will listen. I am just worn out from the way I feel and from my latest symptom(s). My bloating that has become chronic over the last year (especially the last quarter) is really tough to deal with. It seems that no mater what I eat, I bloat. I look pregnant most of the time, and I am a slender frame male! I have been strictly gluten and lactose free in my eating for over 3 weeks now, watching it more closely than I ever have in the past. But this bloating, and toxicity I feel inside of me just can't continue much longer. I am about ready to throw in the towel and curl up in a corner.
You guys all know how you have to put on your game face for what I call "the vanity of life", especially when you are feeling unwell? Well, I am just simply tired of doing so. Life doesn't slow down for us. It doesn't have, except for this board, compassion or empathy for us. It just charges on full steam ahead and plows us over.
So I am miserable tonight and making my list of symptoms for Mayo Clinic. I don't want to miss a thing for them. That appointment can't come soon enough. Have my flights, car, and hotel booked. Staying on campus connected by the tunnels since I am going by myself and don't want to deal with driving in between procedures. Really wish I didn't have to be alone up there but my wife is tending to one of our dogs who is very old and sickly. I told her to stay home. She really needs to. Besides, I am used to being by myself on the road, but that has grown old too - especially when one doesn't feel well. Found out a few weeks ago that my mom in Florida has breast cancer. She gets surgery and radiation and chemo all starting next week. Would really like her with me but am also worried about her. Life just plain sucks. Flat out sucks big time. Seems everywhere I turn in my life, people close to me are either sick or dying. All the time, everywhere!!! Tired of that too.
I recall being testing for SIBO many years ago and that was negative... today I wonder if I would get a different result. I just added that to my list. I was told by my local doctor that I have an abnormal CT scan... They said I have a fatty liver and a spot on it they are watching. Now I don't know what in the world caused a fatty liver in me. I am 5'-10" and 150 lbs soaking wet. But I also wonder if something isn't wrong with my liver, gallbladder, or pancreas. And since it takes so damn long to get in to see a doctor in my home town, I have thrown in the towel and am hoping that Mayo can shed light on all of my test results.
I know I am rambling... Apologize for that. But I am not at my best right now. And life just continued to steam roll right over me.
Tired of the Bloating!!! Venting... That's all.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Tired of the Bloating!!! Venting... That's all.
"It's not what I believe. It's what I can prove." - A Few Good Men
Oh my God, Deb, I am literally tearing up upon reading your response!!! I am at a loss for words! I think I will be OK by myself since I won't need to drive. I am just so tired of being alone in out of town situations like this. I think it stems from when my wife had her bone marrow transplant in Cleveland and I was with her for the first six months and then had to return to work - which was so so so so so hard for me to leave her. Who knows, I am a head case lately.
But perhaps if they keep me as long as they say, we could meet for coffee or whatever. Not sure how to private message on this board but if you reach out to me that way, I will give you my email and cell number. But knowing someone else is local is big relief!!!!
How have you been dealing with your MC? Have you been seen by anyone at Mayo?
And very nice to meet you! Bless you!
But perhaps if they keep me as long as they say, we could meet for coffee or whatever. Not sure how to private message on this board but if you reach out to me that way, I will give you my email and cell number. But knowing someone else is local is big relief!!!!
How have you been dealing with your MC? Have you been seen by anyone at Mayo?
And very nice to meet you! Bless you!
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich, I was diagnosed in 2010 with LC. I was fortunate in that I eliminated gluten and was able to obtain remission. My PCP was surprised/interested that eliminating gluten helped my LC and said she would suggest that to some of her other patients. Since then I think Mayo has gotten better about a diet influence. I will send you my phone and email info. I would be happy to pick you up from the airport. Once you get downtown it is pretty easy to maneuver to your appointments. You will probably be impressed by their system. Deb
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Rich
all the spare energy and support I can offer is yours.
Admitting that you have 'had enough' is a big positive step, I hope the upcoming appointments and tests give you a good base to heal from.
as a forma 'super organised, slightly perfectionist, super woman' life is way way easier and more enjoyable when you stop trying to maintain the facade/role of super woman. you can use all that energy on healing... and enhancing the quality of life in all aspects, relationships, family, and work.
take care
all the spare energy and support I can offer is yours.
Admitting that you have 'had enough' is a big positive step, I hope the upcoming appointments and tests give you a good base to heal from.
as a forma 'super organised, slightly perfectionist, super woman' life is way way easier and more enjoyable when you stop trying to maintain the facade/role of super woman. you can use all that energy on healing... and enhancing the quality of life in all aspects, relationships, family, and work.
take care
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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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
Rich, I think many of us have felt the way you do at some point. Traveling with this disease is a nightmare and I sympathize with you. What saved me was this board and the direction I received from them. First Enterolab, going GF, DF, SF, EF and then starting entocort. Entocort worked for me from the very first day. After 2+ years! I'm finally off it and managing fairly well.
I hope the docs at the Mayo can help you. Most of us do get better over time. Patience is necessary and the will power to be satisfied with a possibly very restricted diet. You have a great deal of stress right now and that doesn't help your situation. I'm praying your Mom's cancer is curable and that she does well. We've been having some discussions about meditation on the Board. With all of the stress you're experiencing, meditation could help you de-stress.
Please let us know how you're doing.
Good luck,
Sheila W
I hope the docs at the Mayo can help you. Most of us do get better over time. Patience is necessary and the will power to be satisfied with a possibly very restricted diet. You have a great deal of stress right now and that doesn't help your situation. I'm praying your Mom's cancer is curable and that she does well. We've been having some discussions about meditation on the Board. With all of the stress you're experiencing, meditation could help you de-stress.
Please let us know how you're doing.
Good luck,
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
Oh Rich, I hear you and feel for you.
I do hope that things get better for you. All I can say about the bloating is that there are definitely certain foods that can cause excess gas and down the road, you may want to look at those. Any form of sugar or artificial sugar, fruit, onions, garlic,cruciferous vegetables…etc If you look up FODMAP foods, you will get a list. I'm sure right now, you don't want to tackle more diet changes, but hopefully, the Mayo won't find anything terribly wrong and diet just may be your answer.
So sorry to hear about you mother. Breast cancer has a very high rate of recovery. Try to think positive for her. it's good for her… and for you.
Let us know how your trip goes.
OXOX Leah
I do hope that things get better for you. All I can say about the bloating is that there are definitely certain foods that can cause excess gas and down the road, you may want to look at those. Any form of sugar or artificial sugar, fruit, onions, garlic,cruciferous vegetables…etc If you look up FODMAP foods, you will get a list. I'm sure right now, you don't want to tackle more diet changes, but hopefully, the Mayo won't find anything terribly wrong and diet just may be your answer.
So sorry to hear about you mother. Breast cancer has a very high rate of recovery. Try to think positive for her. it's good for her… and for you.
Let us know how your trip goes.
OXOX Leah
Oh, Rich,
You have so much on your plate just now. The old "when it rains it pours" situation, it seems. And it sucks big time, I know.
I know you have some health issues in addition to the MC that you are hoping to get clarification on at Mayo. But don't be too disappointed if you do not get much help with the MC. The best way to manage MC is through the info and experience here on this Board. Even the most venerable university medical centers still don't "get it" when it comes to MC and the critical food connection.
IMHO, you probably don't have a particularly tricky or difficult case of MC. Rather, I think you have just never been in a position work-wise to give diet the attention and time that is needed to be able to tease out all of your food sensitivities and avoid them for a good stretch of time. I don't recall that you ever did the Enterolab tests.....if not, that is a good place to start. I will bet that you may need to avoid other common offenders in addition to gluten - like dairy, soy, perhaps eggs, etc. I will also bet that your chronic bloating is due to your continued eating of foods that you are sensitive to. In addition, continued exposure to unsafe foods may be causing damage to your GI tract, which leads to inability to absorb nutrients and eventual malnutrition. One of the consequences of malnutrition can be a fatty liver.
I understand your dilemma about needing to stay in your job to be able to sock away $$ for the future, but I am wondering if there is any way you could take a leave for several months to be able to have the time to figure all of the diet stuff out. Once you get a handle on your sensitivities and learn how to prepare safe foods to have with you on the job, I really believe you will be on the road to health.
I wish I could visit you while you are at Mayo, but alas, that's not in the cards. However, I would love to have a phone chat. If you are interested, PM me and we can exchange cell phone numbers and figure out a time we can chat.
My only "words of wisdom" for now would be to try to focus on the moment (present) and put all thoughts of the past (having to leave your sick wife) and the future (your mom's cancer) on hold for now. Your main goal should be to take good care of yourself.
Love
and a big hug
Polly
You have so much on your plate just now. The old "when it rains it pours" situation, it seems. And it sucks big time, I know.
I know you have some health issues in addition to the MC that you are hoping to get clarification on at Mayo. But don't be too disappointed if you do not get much help with the MC. The best way to manage MC is through the info and experience here on this Board. Even the most venerable university medical centers still don't "get it" when it comes to MC and the critical food connection.
IMHO, you probably don't have a particularly tricky or difficult case of MC. Rather, I think you have just never been in a position work-wise to give diet the attention and time that is needed to be able to tease out all of your food sensitivities and avoid them for a good stretch of time. I don't recall that you ever did the Enterolab tests.....if not, that is a good place to start. I will bet that you may need to avoid other common offenders in addition to gluten - like dairy, soy, perhaps eggs, etc. I will also bet that your chronic bloating is due to your continued eating of foods that you are sensitive to. In addition, continued exposure to unsafe foods may be causing damage to your GI tract, which leads to inability to absorb nutrients and eventual malnutrition. One of the consequences of malnutrition can be a fatty liver.
I understand your dilemma about needing to stay in your job to be able to sock away $$ for the future, but I am wondering if there is any way you could take a leave for several months to be able to have the time to figure all of the diet stuff out. Once you get a handle on your sensitivities and learn how to prepare safe foods to have with you on the job, I really believe you will be on the road to health.
I wish I could visit you while you are at Mayo, but alas, that's not in the cards. However, I would love to have a phone chat. If you are interested, PM me and we can exchange cell phone numbers and figure out a time we can chat.
My only "words of wisdom" for now would be to try to focus on the moment (present) and put all thoughts of the past (having to leave your sick wife) and the future (your mom's cancer) on hold for now. Your main goal should be to take good care of yourself.
Love
and a big hug Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Rich,
FWIW,
100 % with Polly. Your work/travel schedule precludes effective dietary treatment of MC, and that's almost surely the source of the bloating.
Take care of yourself, and good luck at the Mayo.
Tex
FWIW,
100 % with Polly. Your work/travel schedule precludes effective dietary treatment of MC, and that's almost surely the source of the bloating.Take care of yourself, and good luck at the Mayo.
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.
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Rich,
I know that feeling, "this is too much, I just can't deal with it any more". I certainly have been there. The only good thing about it is that you can use it as a starting off point for figuring out what you need to do and becoming scrupulous in your approach. Not easy I know but certainly worth it.
For what it is worth, I have been diagnosed with pelvic floor dysfunction and had a bunch of those embarrassing tests to determine it, not at Mayo but at Dartmouth Hitchcock Medical Center which is the big wig medical center in the area. I even saw a physical therapist for a while who specialized in pelvic floor dysfunction, she even may have been able to help eventually, but she was a 2 hour drive from me and only worked part time, and was hard to get an appointment with. Once a month wasn't doing it. Since the therapy was hands on, her hand on me, I believe I would have had to see her several times a week for an extended period to make it worthwhile but that wasn't an option. I am about to get serious (I hope) with home exercises for pelvic floor dysfunction, because I believe that is what is the major problem now for me but first getting the MC under control with strict diet measures was essential for me being able to contemplate this next step. So I agree with Polly that your finding away to figure out your diet and how to implement it in your traveling life, is necessary.
I wish you good luck at Mayo,
Jean
I know that feeling, "this is too much, I just can't deal with it any more". I certainly have been there. The only good thing about it is that you can use it as a starting off point for figuring out what you need to do and becoming scrupulous in your approach. Not easy I know but certainly worth it.
For what it is worth, I have been diagnosed with pelvic floor dysfunction and had a bunch of those embarrassing tests to determine it, not at Mayo but at Dartmouth Hitchcock Medical Center which is the big wig medical center in the area. I even saw a physical therapist for a while who specialized in pelvic floor dysfunction, she even may have been able to help eventually, but she was a 2 hour drive from me and only worked part time, and was hard to get an appointment with. Once a month wasn't doing it. Since the therapy was hands on, her hand on me, I believe I would have had to see her several times a week for an extended period to make it worthwhile but that wasn't an option. I am about to get serious (I hope) with home exercises for pelvic floor dysfunction, because I believe that is what is the major problem now for me but first getting the MC under control with strict diet measures was essential for me being able to contemplate this next step. So I agree with Polly that your finding away to figure out your diet and how to implement it in your traveling life, is necessary.
I wish you good luck at Mayo,
Jean
Hi Rich,
I think it would be worth repeating the test for SIBO at this point. You might consider fructose intolerance or FODMAP issues as a possibility too. But it's true, I bloat after many restaurant meals, so I know something in them just isn't safe. Being able to prepare your own meals in a clean kitchen is so important.
I think it would be worth repeating the test for SIBO at this point. You might consider fructose intolerance or FODMAP issues as a possibility too. But it's true, I bloat after many restaurant meals, so I know something in them just isn't safe. Being able to prepare your own meals in a clean kitchen is so important.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Hi Zizzle, You mentioned that you bloat after resturant meals. I have noticed when watching foods they show the cooks using aluminum pots and pans. While cooking some of aluminum will be broken down and absorped by the food. Some ingredients that are added to the food that is cooked will break down more aluminum. The aluminum will cause G.I. distress. Jon
I call it 'basketball belly'....and it was driving me crazy, too!
I whittled down my foods to about 6, then played with those....what I feel has helped to alleviate some of my uncomfortable bloating is being grain free, & nightshade free. Potatoes became my staple, but the starches are hard to digest. I also started taking L-Glutamine, and I feel it has helped....along with a very simple meat/veggie diet.
I hope you find answers soon!! :) Good luck!!!
I whittled down my foods to about 6, then played with those....what I feel has helped to alleviate some of my uncomfortable bloating is being grain free, & nightshade free. Potatoes became my staple, but the starches are hard to digest. I also started taking L-Glutamine, and I feel it has helped....along with a very simple meat/veggie diet.
I hope you find answers soon!! :) Good luck!!!
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....