21 yr College Student - In remission for 2 years

[nellycrohns]

Hi Everyone!

I am new here and I thought I would like share my story of Crohn's Disease.

I am a college student at Purdue University, graduating this May with a degree in General Health Science, Minor in Biology, Concentration in Pre-Medicine.

My Crohn's Disease began in the summer of 2011. It was minor back then. Just occasional diarrhea, no chronic abdominal pain, no weight loss. Once I got back to school, the diarrhea became more frequent, until I had 8-10 bowel movements per day, the clinical symptoms - abdominal pain, abdominal cramping, anal fissure, weight loss, anemia, etc. It was awful especially at that time I was dealing with depression and 21 credit hours.

In May I finally went to a specialist, Dr. Monica Fischer, and was diagnosed with Crohn's Disease.

She suggested I take anti-TNF biologics, Humira. But I didn't want to because of the side effects. So she suggested the alternative - 1 month Prednisone stress dose beginning at 60mg and tapper off.

I am Chinese, so I believe in herbal medicine and supplements and treating the body as a whole. These are the things I took everyday for 2 months

Prednisone 60mg - Tapper off
Chinese Herbal Medicine - 3x daily
Niacin 500 mg - 2 pills, 3x daily
Alpha Lipoic acid 250mg - 1 pill, 3x daily
Vitamin C 500mg - 2 pills daily
Centurion Multi Vitamin - 1 daily
Folic acid 500mg - 1 pill - M, W, F
L-Arginine 500mg - 1pill T, Th
Apple Pectin 500mg - 1 pill daily
Calcium & Vitamin D 1000mg - 1 pill M, W, F

Aside from these supplements I also had to change my Diet and lifestyle. Apparently my Crohn's react extremely negatively to raw vegetables and caffeine.

Diet Must haves everyday

Vegetables (must be cooked) - broccoli, celery, tomatoes
Fruits - Apples & bananas
Meats - Fresh fish I chose salmon because it is my favorite, Chicken, Pork, minimal amount of red meat
Fat & oil - Minimal


My Foods to avoid
- Caffeine - Concentrated coffee or tea makes my abdominal pain excruciating
- Raw vegetables - I avoided raw vegetables during my 2 months of treatment, now I can eat some
- Alcohol - I didn't drink any during treatment. Now I drink 1-2 glasses of wine with food each month
- No smoking - I never smoked
- Nothing Spicy - Spicy food makes the pain worse and it is inflammatory
- No Fried food or Fast food - My motto "Crap in. Crap out" it is just generally terrible for your body
- Minimal Oily food - You can use some butter or olive oil to cook. But avoid oil pepperoni pizza
Exercise is needed everyday. I focused most of my exercise on cardio and ab works outs to increase blood circulation to my abdomen.

1st week
- Walking - 30-45 min
- 50 sit-ups
2nd week
- light running/ jogging - 15 min
- 50-80 ab work outs
3rd week till now
- Running - 20 minutes - treadmill
- 100- 120 ab works outs

Stress management is super important for me. I never learned how to manage my stress which really made my Crohn's disease worse.


How stress manage
- Take up a new hobby - I chose cooking, it just goes well with my diet and I love salmon
- Take an hour each day for yourself to not think - I do garden work during that hour
- Exercise - it helps distract you from thinking too much
- Find a solution - dwelling on a problem only stresses you out, think of a solution or alternative and fix it to make it go away



My Crohn's Disease has been in remission Since July - August of 2012. I only go for CBC and Calprotectin test once a year.

I did have a minor flare up during early April - lots of diarrhea and lost 7 lbs. I immediately returned to my own treatment plan and now it is back in remission

Don't give up you guys. It can get better. The most important thing I learned during this experience is Diet and Exercise. It really helps change a lot. I am much more energized and happier than ever.

p.s. I made that treatment plan for myself based on my CBC and serum tests. It is not intended for everyone.

 

[xmdmom]

Glad you have been feeling well. Thanks for sharing your tips. And congratulations on your upcoming graduation. Are you going on to medical school?

How have you and your doctor determined you are in remission (lack of symptoms) or also normal lab tests? Have you had any imaging or endoscopy since 2012?

 

[nellycrohns]

I applied for medical school. Got rejected because I was studying for MCATs while dealing with Crohn's and my dad's cancer, got a bad score. But I am reapplying for Doctor of osteopathy next cycle!

The doctor said last November that I am in remission because my CBC is extremely good and my calprotectin was normal-ish. It fluctuates between 90 - 250, but considering I have Crohn's and my unusual Asian diet this is normal and acceptable.

I have not had any endoscopy done since 2012. I will probably get one after I graduate considering my latest minor flare up.

 

[David]

Hey there and welcome to the community. I'm glad to hear you're in remission. Thank you for taking the time to share your treatment plan

Out of curiosity, what chinese herbals are you taking and why apple pectin?

All my best to you.

 

[nellycrohns]

Well I don't know what they are, but when I get home I can check.

But I went to a Tradition Chinese Medicine Doctor. She took my pulse twice, looked at my tongue, and eyes and asked me diagnostic questions then gave me a prescription of 10 different Chinese Herbs. I slow boiled those herbs and drank the liquid.

I also took apple pectin because it is an anti-oxidant and anti-inflammatory. Crohn's Disease is an inflammatory disease. So any supplements and foods that are anti-oxidative and anti-inflammatory was, in my opinion, good for me.

 

[maile]

My daughter also has crohns but just takes pentasa now. She stopped 6mp because her WBC went too low. Just wondering, so you don't take any immunosuppressants like 6mp or any biologics? My daughter is in remission but her calprotectin recently went up to about 269 but no diarrhea....sometimes loose stools. My daughter is also in college and Chinese. I never thought about Chinese herbs but if she gets worse maybe I might take her to a Chinese herbalist. Do you think it helped a lot? Did you ever have the Prometheus test done?

 

[nellycrohns]

I do not take any immunosuppressants or anything nor did I have the Prometheus test done. All I take is supplements.

I think the Chinese Herbal remedy helps. But you need to use it for a long time with the western medicine. Chinese herbal medicine and supplements, in my opinion, takes a long time to accumulate its effect. I was taking the Chinese herbal medicine (2 months) + Prednisone (1 month) + supplements (1.5 months) and it went away. I went into remission for two and half years.

I am currently in a minor flare up. So I went back into taking massive amount of supplements and aloe juice.

 

[nellycrohns]

Also It's hard to explain as a parent. Your daughter might understand and feel the pain better. You can try different combinations of medication and supplements to see if it works.

She would know if the combination is not working. I don't know how to explain it. But I have tiny feelings of unease when the combinations aren't working and I switch it up immediately.

 

[maile]

Okay, thanks for the info. I'll let my daughter know. She's also taking fish oil, one a day women's vitamin, vitamin d 2000 IU, and l glutamine 500mg. I took her to an infectious disease doctor recently because when she was originally diagnosed with crohns and a colonoscopy was done, a test came back positive for mycobacteria gordonae. I wanted to know whatever came of that so I took her to an infectious disease doctor who tested her stool. This time it came back positive for mycobacteria avium complex. She does not have HIV or AIDS or any problems with her lungs. I think what she probably has is mycobacteria avium paratuberculosis if anything because of its association with crohns. She's going to have a colonoscopy done soon to see if the mycobacteria is in her tissues and her GI will ask the pathologist to check for MAP. I think she got it from the homemade kefir milk.
I hope you feel well soon. If my daughter flares I will take her to a Chinese herbal doctor.