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Newly diagnosed


Mon, June 17, 2019 8:14 PM

Hi all,

Newly diagnosed with Chron's.

Wondering if anyone has any advice for me that my doctor wouldn't have brought up.

FPO mrateb
Joined Jun 17, 2019

Sat, August 03, 2019 1:53 AM

Reply posted for TeresaUC.

I wanna know what side effects you experienced from taking this? Thanks!

FPO BangsMarr
Joined Aug 2, 2019

Tue, July 09, 2019 1:25 PM

Reply posted for mrateb.

hey there!  I wanted to put in a word to respond to your great question.  I was diagnosed with moderate to severe UC in 2009. For several years after I struggled from one med to the next, asacol, azathiaprine, delzacol, prednisone, you name it.  Nothing seemed to work consistently.  About three years in, I started to do my own reserach and came across a prescription grade probiotic called VSL D3 made specifically for Crohns and UC sufferers.  I started taking the packets daily and what do you know, my UC symptoms went away!  It worked fast too.  Now, I would say that my BMs are better than they were prior to my diagnosis.  I have one solid BM per day, same time of day, and never have cramps or any other issues.  The occasional stomach bug or spicy food doesn't cause flare-ups.  In fact, I haven't had any flare ups since starting VSL.  I have had two colonoscopies since the last 5 years and had no inflammation.  My doctor is all but amazed that the remission was instigated by the probiotic but she says that if it works for me, she's not going to tell me to take prescription drugs.  And if I can avoid them, I definitely will!  I want all UC/Crohns sufferers to know about this probiotic.  Many people say that UC/Crohns develops when antibiotics used to treat viruses and other illnesses kill off good bacteria in our gut.  It woudl make sense that taking these probiotics to restore the good bacteria in your gut would "cure" the UC/Crohns.  Anyway, that's my two cents.  I've noticed that not a lot of UC sufferers have heard of this probioitic before and not all doctors either, which I think is a shame.  If we can treat illness naturally, we should be shouting it to the mountains so that everone can be healed naturally!  So this is my shout out - hope it works for you too!  

FPO TeresaUC
Joined Jul 9, 2019

Sat, June 22, 2019 7:50 PM

Reply posted for mrateb.

I also recommend seeing a dietitian who is familiar with Crohns. Although, I have Microscopic Colitis, I have received conflicting info from my doctor versus the dietician. For example my GI doctor didn’t provide any specific advice on diet. I found it on my own and on forums like this one. My dietician helped me even further. As others have said different things work for each person.

FPO Redrockgal
Joined May 30, 2019

Tue, June 18, 2019 1:19 PM

Reply posted for betterbellies.

You do have to be an advocate for yourself. Also, make sure all your doctors are on the same page. I was at my dermatologist for a psoriasis issue, and mentioned that I was on biologics that can trigger psoriasis. She didn’t know I was on those meds. A lot of well meaning friends will give you bad advice on how to treat this. I had a lifelong friend unfriend me on Facebook because I wouldn’t adopt a vegan lifestyle.  Remember, this disease effects everyone differently, and what works for some, doesnt  work for all.  If there are support groups in your area, check them out.  Read all you can about Crohns and colitis, and about auto immune diseases in general.  I’ve found this website very worthwhile, especially since it tells me I’m not alone.

FPO charbs
Joined Oct 31, 2016

Tue, June 18, 2019 10:49 AM

Reply posted for mrateb.

So sorry to hear you have IBD also. I have UC not crohn's. I have learned a lot over the years. Here are a few tips:
1.) Advocate for yourself. You know your body the best. Get to know it and advocate for yourself to your healthcare providers. If you aren't getting what you need go some where you can get what you need. 
2.) Find a great therapist to help with all the mental baggage that comes along with IBD. It really isn't taboo...I find it so so helpful. 
3.) You can play around with diet but listen to your body not what everyone on the internet says. 
4.) Go to support groups! 
5.) Share your journey it is therapeautic. I do this on Instagram @betterbelliesbymolly
6.) Exercise helps. Yoga and low impact really helps me.
7.) Learn to put yourself first. 
8.) Share your journey when you are ready! 

FPO betterbellies
Joined Jun 18, 2019

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