09-05-2015, 07:01 AM   #1
martajayne
 
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Join Date: Sep 2015
Newbie

I began experiencing symptoms around age 21 but wasn't diagnosed with Crohns until I was 45. I had gained a ton of weight and had my gall bladder removed after suffering from debilitating gallstone attacks. Due to unusual pain after the surgery (Dr nicked my liver) they gave me a CAT scan and found the enlarged terminal ileum. When I was diagnosed I didn't believe it..at first. After landing in the hospital with an obstruction (worse pain than child birth) I was convinced and started faithfully taking the meds. After my gastro Dr put me on Humira I thought my life was over. I began experiencing intense knee pain and still having horrible symptoms. That's when I started researching alternative therapies and am now pharmaceutical free and controlling my symptoms with diet and natural supplements. I feel like I'm not the typical patient. I'm overweight, have a relatively healthy colon and, although I have several strictures in my small intestine, I don't have trouble eating as long as I stick to my diet. Is there anyone else that's like me?
09-05-2015, 07:37 AM   #2
Charlotte.
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Join Date: Nov 2014

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Welcome to the forum, Marthajayne! Glad to hear you are quite symptome free without medication. I'm interested in your diet, what exactly does it look like and what supplement do you take?
I experienced many side effect while on Humira and it did not help my Crohn's or my Arthritis and I'm still looking for the "right" diet for me.
__________________
Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
09-05-2015, 08:04 AM   #3
24601
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Join Date: Dec 2013
Location: London, UK
Welcome to the forum!

Glad to hear you are feeling well. Just to say it's always important to keep up monitoring with bloods and imaging as symptoms do not always correlate with disease activity - so it's possible, while feeling quite well, to have continuing damage that could lead to formation of strictures, fistulas, obstruction or perforation.

I was never a typical Crohnie with no disease in the colon, constipation rather than diarrhea and no trouble maintaining a healthy weight until my strictures became severe.

For me exclusive enteral nutrition had some effect on disease activity but not enough and while dietary changes (elimination diet and SCD) gave me some symptomatic relief they did not stop the progress of the disease such that I required multiple small bowel resections.

A significant difference between our two cases is that I had symptoms from age 6 so that would put me in the early onset IBD category in which a more aggressive disease course is more likely.

Hope the good health continues for you. Does your GI see any inflammation on imaging?
__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
09-05-2015, 03:05 PM   #4
martajayne
 
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Join Date: Sep 2015
Welcome to the forum, Marthajayne! Glad to hear you are quite symptome free without medication. I'm interested in your diet, what exactly does it look like and what supplement do you take?
I experienced many side effect while on Humira and it did not help my Crohn's or my Arthritis and I'm still looking for the "right" diet for me.
Thank you Charlotte. I follow the SCD diet (for the most part)and Water Cures protocol as well as supplements including an organic Turmeric mix, black walnut, diatomaceous earth and probiotics. I eat organic whenever I can and stay away from grains, sugar and alcohol. I drink an organic tea at night that aids digestion and helps regulate my bowels. Most important for me was getting enough water into my system due to fluid absorption issues. This seems to be working for me but I still regularly consult my Dr and have yearly exams/xrays/colonoscopies. So far so good.
09-05-2015, 03:15 PM   #5
martajayne
 
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Join Date: Sep 2015
Welcome to the forum!

Glad to hear you are feeling well. Just to say it's always important to keep up monitoring with bloods and imaging as symptoms do not always correlate with disease activity - so it's possible, while feeling quite well, to have continuing damage that could lead to formation of strictures, fistulas, obstruction or perforation.

I was never a typical Crohnie with no disease in the colon, constipation rather than diarrhea and no trouble maintaining a healthy weight until my strictures became severe.

For me exclusive enteral nutrition had some effect on disease activity but not enough and while dietary changes (elimination diet and SCD) gave me some symptomatic relief they did not stop the progress of the disease such that I required multiple small bowel resections.

A significant difference between our two cases is that I had symptoms from age 6 so that would put me in the early onset IBD category in which a more aggressive disease course is more likely.

Hope the good health continues for you. Does your GI see any inflammation on imaging?
Thank you. I'm due for an exam in October. I've been on this diet for the last 6 months. I'm curious to see what my insides look like. Last time I still had several strictures. I'm very careful about what I eat and am focused mainly on killing the bad bacteria and fungus, replenishing the good bacteria and controlling the chronic inflammation. Not sure what's going on inside me for sure but I feel a lot better. My skin and hair are healthy and I've lost over 20 lbs without much exercise. The best part is that my joints don't hurt anymore. I'll be sure to check back after my exam.
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