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Familial?

Hello fellow Crohnies/UCs:

As a new member and reading many of the posts here, my heart just aches. So much suffering. I was diagnosed at age 21 with UC when I had the sudden onset of severe bleeding. By the time that flare was over, I looked like Jordan Rubin on the cover of his book Patient Heal Thyself - without the beard, of course. In those days, which some of you might relate to, I was told it was "psychological." There was no internet or support groups to help me. None of my friends or family could relate to it. I was totally alone in this adventure/nightmare. After being diagnosed and going to a gastro, I was given only Azulfidine and changed my diet some, but was always having flares every three months.

After losing a few jobs and suffering for six or seven years like that, I developed an abscess which sent me to the hospital with removal of about 4' of colon and terminal ileum. I am surprised I don't set off the metal detectors with the 100 staples still inside, piecing me together. Since surgery and its annoying residuals, I have had one long flare in 28 years (I did not go back to the doctor).

Life went along well after surgery. Became self employed from home (what a life saver), got married, had two kids, got divorced and still work from home.

In January this year my daughter (now age 23) became very ill and was quickly diagnosed with Crohn's. Her disease was extremely extensive, with ulcers beginning from the esophagus all through the colon and gastritis with the small bowel spared. Thank God she wasn't bleeding like me, though. The doc wanted to put her immediately on Humira after being freshly diagnosed and off work one week. She and I were still in shock and wanted to "think about it."

Well, to make a long story short, we took the "natural" route. Started with a naturopath with some vits/acupuncture, then got referred to a very cool internist that gave prescriptions for supplements instead of meds (meds only when last resort). We went right to work with a diet that worked for her through trial and error, and I did hundreds of hours of research on the internet. She did finally agree to Prednisone, which she took off and on for three months at a lower dose, although we don't really know if it did much. She was sensitive to nearly all meds. From the first colonoscopy on February 1 to the second in May, all ulcers were gone, all gastritis was gone, and the only remaining issue was inflammation of the descending colon.

Although the process from start to finish was about six months, she is back to work, doing well, gained 15 pounds and feels great.

Thanks for listening.
 

DustyKat

Super Moderator
Hi Sharon and :welcome:

Good to see you here. How you are going now with your UC now? Are you on any meds?

Sorry to hear about your daughter but good to read that she is now doing well and feeling great, YAY! I hope it lasts for a very, very long time.

I hope you stay around 'cause there's loads of info and support here and we would love to have you here. Good luck and welcome aboard!

Take care, :)
Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Welcome Sharon!! I hope the natural route continues to work for you and your daughter!! I'd be interested to know the names of those natural supplements. My son takes several naturals along with his meds. He's had no med side effects so we're not going to discontinue them but we too have gained confidence in a more homeopathic route. Stick around and let us know how it goes!!
 
Thank you!

Hi Sharon and :welcome:

Good to see you here. How you are going now with your UC now? Are you on any meds?

Sorry to hear about your daughter but good to read that she is now doing well and feeling great, YAY! I hope it lasts for a very, very long time.

I hope you stay around 'cause there's loads of info and support here and we would love to have you here. Good luck and welcome aboard!

Take care, :)
Dusty
Hi Dusky,

Thank you so much for the warm welcome! I haven't had a flare since that one nine years ago (my mom died unexpectedly), although I should add that with the shortened colon from surgery, I'm making an average of six bathroom trips a day. I'd rather be mindful of dehydration than ingest stuff that doesn't work for me. :lol:

My best to you,
Sharon
 
Morning!

Welcome Sharon!! I hope the natural route continues to work for you and your daughter!! I'd be interested to know the names of those natural supplements. My son takes several naturals along with his meds. He's had no med side effects so we're not going to discontinue them but we too have gained confidence in a more homeopathic route. Stick around and let us know how it goes!!
Hello Mark, Father of EJ!

Thank you so much for the welcome note. Would be honored to tell you what I gave my daughter, but the list is long! :) Here's some of the more important things - D3 (nonfish source) 35,000 units daily until her D level came up to normal; Carotenoid Complex (Vita A, vegetable source) one cap @25,000 units; black current oil; high stress B Complex; B12 2000 mcg sublingual; multivitamin rice powder mixed in water; for anemia, red beet based iron tablets (called Women's Blood Builder).

Her mercury level was very high, so all fish was stopped (the doctor said it causes inflammation). The most beneficial was 1) slippery elm gruel, 2) fresh marshmallow/licorice tea, 3) for gastritis/nausea, fresh ginger tea.

Over here, several people my daughter knows say Sea Buckthorne is like a miracle. We have not tried this, but thought it may be worthy of mention.

My best to you and your son. Keep up the great work!

Sharon
 

Astra

Moderator
Hi Sharon
and welcome

I'm a bit confused, fish causes inflammation? I eat a lot of fish, no red meat, cos I've read it's rich in Omega 3, and reduces inflammation, and that fish oil reduces symptoms of joint pain and stiffness. Omega 6 on the other hand, promotes inflammation, this is found in red meat.
Anyway, best of luck to you and your daughter, hope your remission continues for a long time
lotsa luv
Joan xxx
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Thanks Sharon! EJ takes Hepatrophin PMG, Catalyn, Gastrex, and Okra Pepsin from a company called Standard Process. My wife is actually off to a conference this weekend to learn more about this company. She's a veterinarian and many of their products are also used in vet practices.

Is it the mercury or the fish itself that is inflammatory? Are the B12 and the Bcomplex separate? EJ takes a Bcomplex that seems to have helped solve an issue with tongue sores a few months back.

Here's to continued success!!
 
Thanks Sharon! EJ takes Hepatrophin PMG, Catalyn, Gastrex, and Okra Pepsin from a company called Standard Process. My wife is actually off to a conference this weekend to learn more about this company. She's a veterinarian and many of their products are also used in vet practices.

Is it the mercury or the fish itself that is inflammatory? Are the B12 and the Bcomplex separate? EJ takes a Bcomplex that seems to have helped solve an issue with tongue sores a few months back.

Here's to continued success!!
Hi Mark,

I'm familiar with Standard Process. Glad to hear EJ is going well with it. My understanding about the fish is that the oils are anti-inflammatories, but the mercury is an inflammatory. Kind of a Catch 22. Normal levels should be under 1.0. I would guestimate that everyone handles mercury differently. I chose the black current oil for omegas for that reason (my daughter was in the 3s). Also great to hear the B vits worked for EJs mouth sores. Yes, the B12 was additional.

Cheers!
 
Mercury

I am glad to hear that I am not the only one with mercury issues. My mercury levels were extremely high. I have removed all of my fillings and have had great success. I did have a put back this last year and still healing from it but they wanted to operate on that section 5 years ago because it was so bad. I made it for 5 years. I just got rid of my fillings last August and September. 2-3 months before my surgery. I went into a huge flare when I got those mercury fillings removed. I should have gone to a naturalist dentist to get them removed. There is loads of mercury in fish and tuna.

I have learned with Omega 3 you should not use a fish source because of the mercury. If you research this there is a ton that are not fish sources. You also need to make sure that you have the correct balance with Omega 3,6, and 9. Your bodies lipids are mostly fat and need the right ratio to work properly and become full of oxygen.
 
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