I'm sick, overwhelmed and scared
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I'm sick, overwhelmed and scared
Sorry for the 'dark' subject line...just being honest. Diagnosed with CC 3 years ago, naively used budesonide for 2.5 yrs and am now desperately looking for better help. I'm seeing a naturopathic dr for the first time, trying everything I can to get better. I bought Wayne Persky's book (the best literature I've seen on this topic - thank you!). I'm trying the food elimination thing and recognize it's going to take awhile before I learn what works best for me. I've started getting aches and pain all over my body, I constantly feel fatigued with frequent dizziness. My brain feels fuzzy a lot as well which is definitely interfering with my life, particularly my work. I'm female, 60 years old and feel like I'm 80. I will not go back on the budesonide. I WILL do everything humanly possible to address dietary changes to get better. It's just that I'm feeling so sick right now. I don't feel I can wait for the weeks and possibly months to get the results through an altered diet. I'm so uncomfortable whining about this but I guess if I can't do it here I can't do it anywhere, right? Thank you to every single one of you for your stories, your help and your wisdom.
Hi,
Welcome to our Internet family. I understand how you feel, because I once felt the same way. CC can be an overwhelming disease, because it can affect so many organs in the body, and all of the symptoms together can be overwhelming and debilitating. The arthritis symptoms, the fatigue, and the brain fog are all due to the inflammation in your intestines, and they will slowly fade away as your intestines heal. It usually takes a year or more, however, to completely resolve all of the fatigue and the brain fog.
Inflammatory bowel diseases deplete vitamin D levels, and they can cause other vitamin and mineral deficiencies because of malabsorption problems caused by the inflammation. Corticosteroids such as budesonide also deplete vitamin D. So if you haven't been taking a substantial daily dose of vitamin D, it might be helpful to begin taking roughly 5,000 IU (or more) of vitamin D each day, because most people use approximately that much vitamin D every day even if they do not have CC. And CC/LC/MC patients use even more. If you have been dealing with the disease for 3 years, then you may be low on vitamin B-12 by now, so a B-12 and folate supplement might be helpful, also.
The main key to recovery is to totally avoid all gluten, dairy, and soy while you are recovering. You might not be sensitive to soy, but it's safest to avoid it and then test it later to see if you can tolerate it after you are in remission.
The key to the shortest recovery time is to keep the diet simple and bland, with a few simple foods known to be safe, cooked at home, while avoiding commercially-processed foods. After we have been in remission for a few months or more, then it is usually safe to try to reintroduce (one at a time) fruits and more vegetables, and even raw fruits and vegetables, but it's way too soon to be considering that when you are just starting out on your path to recovery.
The following meats are safe for most of us: turkey, lamb, duck, goose, pheasant, quail, rabbit, venison, or other wild-type meats (except for bison — most bison have DNA from domestic cattle). Only a small percentage of us is sensitive to beef, chicken, or pork, but a few of us are, and by eliminating those foods, you can maximize your chances of successfully recovering in a minimum amount of time.
Most of us (but not everyone) can tolerate carrots, squash, and sweet potatoes, and almost as many of us can tolerate Irish potatoes, also. Vegetables such as well-cooked broccoli and green beans are also usually safe, but broccoli can cause gas problems for some of us. It is important to minimize fiber and sugar (especially fruit sugar) while we are recovering, and absolutely all artificial sweeteners should be totally avoided.
You seem motivated to get your life back, and motivated people get results, so I'm confident that you will be able to do what you need to do in order to recover your health.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. I understand how you feel, because I once felt the same way. CC can be an overwhelming disease, because it can affect so many organs in the body, and all of the symptoms together can be overwhelming and debilitating. The arthritis symptoms, the fatigue, and the brain fog are all due to the inflammation in your intestines, and they will slowly fade away as your intestines heal. It usually takes a year or more, however, to completely resolve all of the fatigue and the brain fog.
Inflammatory bowel diseases deplete vitamin D levels, and they can cause other vitamin and mineral deficiencies because of malabsorption problems caused by the inflammation. Corticosteroids such as budesonide also deplete vitamin D. So if you haven't been taking a substantial daily dose of vitamin D, it might be helpful to begin taking roughly 5,000 IU (or more) of vitamin D each day, because most people use approximately that much vitamin D every day even if they do not have CC. And CC/LC/MC patients use even more. If you have been dealing with the disease for 3 years, then you may be low on vitamin B-12 by now, so a B-12 and folate supplement might be helpful, also.
The main key to recovery is to totally avoid all gluten, dairy, and soy while you are recovering. You might not be sensitive to soy, but it's safest to avoid it and then test it later to see if you can tolerate it after you are in remission.
The key to the shortest recovery time is to keep the diet simple and bland, with a few simple foods known to be safe, cooked at home, while avoiding commercially-processed foods. After we have been in remission for a few months or more, then it is usually safe to try to reintroduce (one at a time) fruits and more vegetables, and even raw fruits and vegetables, but it's way too soon to be considering that when you are just starting out on your path to recovery.
The following meats are safe for most of us: turkey, lamb, duck, goose, pheasant, quail, rabbit, venison, or other wild-type meats (except for bison — most bison have DNA from domestic cattle). Only a small percentage of us is sensitive to beef, chicken, or pork, but a few of us are, and by eliminating those foods, you can maximize your chances of successfully recovering in a minimum amount of time.
Most of us (but not everyone) can tolerate carrots, squash, and sweet potatoes, and almost as many of us can tolerate Irish potatoes, also. Vegetables such as well-cooked broccoli and green beans are also usually safe, but broccoli can cause gas problems for some of us. It is important to minimize fiber and sugar (especially fruit sugar) while we are recovering, and absolutely all artificial sweeteners should be totally avoided.
You seem motivated to get your life back, and motivated people get results, so I'm confident that you will be able to do what you need to do in order to recover your health.
Again, welcome aboard, and please feel free to ask anything.
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.
Hello Whitey........
What you are describing was me in July this year. Today I went out for Sunday lunch with friends for the first time since my dark days.
I had such bad brain fog I had to ask for postponement of my professional course and had to ask my very busy partner to research my crazy symptoms and find some relief - by some miracle she found this site and I started reading a bit myself between my bouts of sleepiness and lethrgy and trips to the bathroom. My doctors haven't been a help, all my support and advice has come from the wonderful members on this forum.
Please start a very simple elimination diet with ten items and keep a very detailed and strict food diary and soon you'll be on the road to recovery.
My food diary is here : http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21620
It started very simply, the later weeks have more information. I now log my sleep pattern and other bits like how I feel, if I have slept in the day etc. No rules, devise your own. Its helpful to see what others have done.
I started my elimination diet with the following ten items : Turkey, Rice Chex, Almond milk, salt, pepper, tea, coffee, over cooked carrots, sweet potato and white potato. Every three days add another item if there has been no reaction.
Take a look at any medication you are taking and ask questions on the forum about drugs that cause problems. I was fortunate to discover eight weeks into a seriously bad flare that my NSAID Ketoprofen, an anti-inflammatory drug, was causing some of my problems. After stopping my watery D stopped.
I started taking transdermal VitD and Magnesium oil. This made huge difference within a relatively short space of four days. I have since added Ionic Mgnesium, Selenium, Zinc and Trace Elements. I changed from Flouride tooth pste to Earthpaste to prevent loss of magnesium in the body caused by flouride.
Please take good care of your hydration, the colour of your urine is a good indicator. You need to pass pale yellow, if its dark your hydration is a problem. I became very dehydrated during my flare, the skin on my inside forearm, if pinched, didn't return to normal within two seconds. That's a quick way I can tell without looking at urine how my hydration is in a moment.
I'm still on the early part of my journey and hope you will join me getting back to health.
Jen
What you are describing was me in July this year. Today I went out for Sunday lunch with friends for the first time since my dark days.
I had such bad brain fog I had to ask for postponement of my professional course and had to ask my very busy partner to research my crazy symptoms and find some relief - by some miracle she found this site and I started reading a bit myself between my bouts of sleepiness and lethrgy and trips to the bathroom. My doctors haven't been a help, all my support and advice has come from the wonderful members on this forum.
Please start a very simple elimination diet with ten items and keep a very detailed and strict food diary and soon you'll be on the road to recovery.
My food diary is here : http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21620
It started very simply, the later weeks have more information. I now log my sleep pattern and other bits like how I feel, if I have slept in the day etc. No rules, devise your own. Its helpful to see what others have done.
I started my elimination diet with the following ten items : Turkey, Rice Chex, Almond milk, salt, pepper, tea, coffee, over cooked carrots, sweet potato and white potato. Every three days add another item if there has been no reaction.
Take a look at any medication you are taking and ask questions on the forum about drugs that cause problems. I was fortunate to discover eight weeks into a seriously bad flare that my NSAID Ketoprofen, an anti-inflammatory drug, was causing some of my problems. After stopping my watery D stopped.
I started taking transdermal VitD and Magnesium oil. This made huge difference within a relatively short space of four days. I have since added Ionic Mgnesium, Selenium, Zinc and Trace Elements. I changed from Flouride tooth pste to Earthpaste to prevent loss of magnesium in the body caused by flouride.
Please take good care of your hydration, the colour of your urine is a good indicator. You need to pass pale yellow, if its dark your hydration is a problem. I became very dehydrated during my flare, the skin on my inside forearm, if pinched, didn't return to normal within two seconds. That's a quick way I can tell without looking at urine how my hydration is in a moment.
I'm still on the early part of my journey and hope you will join me getting back to health.
Jen
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
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dolson
- Gentoo Penguin
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Been there, done that
I've nearly starved myself and told people I eat a Caveman's Diet. The Caveman's Diet is not easy but I feel better. I feel almost human again. I was eating the Specific Carbohydrate Diet and it's Tuff as a Tick to eat, but my health is more important than the garbage I was eating. I can eat what a Caveman eats because it's healthier and we become more robust, stronger, bones thicker, not porous and teeth are healthier. I got this from Wayne Perskey's book. What would I do without him? As I've said before, we are KILLING OURSELVES WITH OUR DIET. If I can do it, you can do it. Just be TUFF and stick to it. Dorothy
Hi Whitey,
Welcome to the clan. I'm sorry that you are feeling so overwhelmed by this disease. It is is pervasive and effects you physically and mentally. However, there is light at the end of the tunnel. Tex is a brilliant help to all of us. I recommend his book (top right corner of the web page) if you haven't already read it. I was diagnosed approximately 2 years ago with LC. It took about 9 months of just eating white rice, rice milk, honey and meat before I really noticed a recovery. My diet is still very simple, but I am moving forwards.
Strangely enough, with such a simple diet for a long period of time, I should have been deficient in many vitamins/minerals. But each blood test comes back and says things are in a normal range. This is completely contrary to what I was taught before I was diagnosed. The best thing you can do is try to reduce the number of 'well meaning' voices you listen to and start to focus in on a very simple diet for a period of time to allow recovery to occur. Then build up from there. For me this has been a physical, mental and spiritual journey.
Welcome to the clan. I'm sorry that you are feeling so overwhelmed by this disease. It is is pervasive and effects you physically and mentally. However, there is light at the end of the tunnel. Tex is a brilliant help to all of us. I recommend his book (top right corner of the web page) if you haven't already read it. I was diagnosed approximately 2 years ago with LC. It took about 9 months of just eating white rice, rice milk, honey and meat before I really noticed a recovery. My diet is still very simple, but I am moving forwards.
Strangely enough, with such a simple diet for a long period of time, I should have been deficient in many vitamins/minerals. But each blood test comes back and says things are in a normal range. This is completely contrary to what I was taught before I was diagnosed. The best thing you can do is try to reduce the number of 'well meaning' voices you listen to and start to focus in on a very simple diet for a period of time to allow recovery to occur. Then build up from there. For me this has been a physical, mental and spiritual journey.
Well, yes, but budesonide is not known to cause SIBO. On the other hand, budesonide has no antibiotic properties, so it can't prevent SIBO from developing, either. It's my impression that virtually all of us have SIBO while our disease is active (regardless of whether or not we take budesonide), due to the poor digestion and altered diet, but the problem resolves on it's own as we heal and begin to see our MC symptoms fade away.
But that's just my opinion.
Tex
But that's just my opinion.
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.