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Crohn's Disease Forum » Your Story » VSL#3 DS, S. Boulardi and Crhon's Colitis


07-04-2015, 10:44 AM   #1
jayann
 
Join Date: Jul 2015
Location: Orlando, Florida
VSL#3 DS, S. Boulardi and Crhon's Colitis

Hi,

I've just joined this site. On the day in 2002 that I was diagnosed with Crohn's disease I had gone to the emergency room with severe abdominal pain and bloody diarrhea. They said I had a perforated colon and needed to have surgery. I figured they'd patch up a little hole. Imagine may shock to wake up with a colostomy bag and my descending colon removed. I didn't even know what Crohn's disease was.(actually Crohn's colitis).

I've have had numerous ugly flares. Have taken mesalmine, asacol, prednisone(worked best) Remicade, Cimzia, flagyl, cipro,
alinia(sp) and others I don't remember.

Within the last year my GI recommended I remove my gut. No way! So she then wanted me to do Humira. I declined as I had side effects from Cimzia. When I went in for colonoscopy in 2013 my lungs were so full and after 2 nebulizer treatments the anesthesiologist wouldn't put me under and sent me home. I quit Cimzia.

Move forward to 2015. About a year ago my Gi recommended my gut be removed. No way! She wanted to put me on Humira. I asked to try Prednisone again. Which took care of that flare. In Sept 2014 I began VSL#3 double strength with S. Boulardi (Jarrow brand online -ship in cooler weather).
Usually two sachets a day and two capsules.

It is July 4th- 10 months later and I have not had symptom 1. So no gut removal or Humira for me as long as I stay symptom free - which I fully expect to do.

I believe you have to research, research, research, and be your own advoctate. If I knew 12 years ago what I know today about the microbiome, I would have taken probiotics along with antibiotics and may not have had to problem. I am also eating healthier- no processed junk and lots of good veggies, fruit and healthy proteins.

I also have an enterocutaneous fistula,(yet to be solved), but I'll get into that in another post.

Good luck and health to everyone out there. Research all you can about your gut and especially the little critters that live there, and hopefully you will find the answer that works for you. Listen to your doc, but also listen to your gut
07-05-2015, 07:46 PM   #2
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
Welcome to the forum!

So happy to hear that you are feeling so much better on VSL. Are you still seeing your GI to monitor your disease activity with imaging?

Hope the good health continues and that you can get your fistula healed too.

Good luck!
__________________
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
07-05-2015, 10:03 PM   #3
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
Congrats! I believe researching on my own and in being very pro-active in my treatment decisions too.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
07-06-2015, 03:36 PM   #4
jayann
 
Join Date: Jul 2015
Location: Orlando, Florida
24601,

I see my GI every 3 months. I have never done imaging, just colonoscopy.
I will see my GI next month.

jayann
07-06-2015, 04:06 PM   #5
jayann
 
Join Date: Jul 2015
Location: Orlando, Florida
Lady Organic,

Thanks for your response. I perused the link you sent. I do believe that diet including prebiotics like leeks, onions and garlic are important to cultivating a healthy microbiome.

I have a friend whose wife has Crohn's. Their doc wanted her to do Humira, but I think the expense was part of their reluctance. She did the SCD diet and after 2 months went into remission. A year later she is still symptom-free.

Have you read Dr. Gerard Mullins books? He's from Gastroenterologist and Nutritionist from Johns Hopkins. His first isInside Tract is excellent about gut health, and the second just came out this summer.The Gut Balance Revolution.... The second book which is mainly directed at gut balance for weight loss. Gut balance for any reason is still gut balance. Anyway his program is in three phases. Phase 1 is basically like the SCD diet which eliminates a lot of microbes, good and bad. Phase 2 is to restore good flora. Phase 3 is to maintain.

I haven't done SCD. It was too restrictive for me. I do try to eat well. I eat almost no processed foods, little red meat, organic chicken, wild caught fish, legumes. I'm trying to up my intake of fruits and veggies. I do eat a lot of prebiotic onions and garlic. I like leeks but don't use them often. The only fermented that I do are organic yogurt with 6 organisms and Kefir with 10 organisms. So far so good. When I'm symptom-free for a few years I will feel confident that this is the answer at least for me.

I tested OK for gluten. Since my Crohns is in the colon I'm not concerned about gluten. I think it is good for people with problems in the ileum. I also avoid GMO's and eat a lot of organic.

I think a healthy microbiota is terribly important.

jay ann
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