Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Probiotics Sucess story

Tue, April 23, 2019 10:11 AM

I am the domestic partner of a man who suffered from UC for many years. His mother had Crohns so we believe the disease was genetically caused. He was extremely healthy until his 30's when the disease presented in his rectum. He was diagnosed and took many of the drugs described on this website as the disease worsened. When I met him in 1995 he was taking prednazone I know because he had the swelling in his face,
He was prescribed 6MP after 2000, not sure of the year. While on 6 MP I do not believe the gastroenteroligist monitored his vital signs frequently, although he did have a colonoscopy 2x a year.
Beware 6MP, it almost killed him ! He developed a high fever in 2005, which we originally thought was the flu. The second day he was so ill, I called to get him a medical appointment but he became so weak I was alarmed and called an ambulance. At the ER, the attending physician did a spinal tap and discovered he had meningitis. The bacteria was later identified as Listeria and it was touch and go for a few days. Luckily he was strong and fit, except for the UC, and survived. After 2 weeks in the hospital, he was sent home with an antibiotic cocktal administered through a PIC line for 6 weeks.
The docs at the hospital wanted to put him back on 6MP, but we said no way. Did some research and found an IBD speialist in Boston, Dr. Mark Peppercorn. This doctor was smart enough to say no more 6MP, we will try other options. He tried the probiotic VSL 3 and it worked better than any of the medications described on this website! VSL3 can be purchased online, no prescription was required then.
But the damage was done to his rectum, eventually he developed displasisa and chose to have surgery removing the colon entirely. He has lived with a pouch for 9 years now, which is an annoyance but he can eat anything he wants and no weight gain. Good health for 9 years is really a precious gift!

sarabelle
Joined Apr 23, 2019

Related Topics

Starting Remicade Infusio...

shannonmiller
Joined Feb 20, 2023

I have Ulcerative colitis, am experiencing a bad f....

read more

Biologic- How to get it c...

orthopt2003
Joined Oct 8, 2021

Hello. My daughter 10 years old after almost 18 mo....

read more

Starting ENTYVIO Infusion...

jabberwocky
Joined Jul 28, 2023

Hello. I’m new to the C&C community and ....

read more

Welcome to the Crohn's & Colitis Community!

This website is associated with CCFA.org and is supported by an educational grant from AbbVie.

Please read our Top 12 Rules before posting messages and sharing stories. Always be courteous and sensitive to others!

Intended audience. The Crohn's & Colitis Foundation Online Community is intended for patients and their caregivers, family and friends. The Community is not intended for industry representatives or advertisers and these individuals are not permitted to participate on the site.

Meet the Crohn's & Colitis Community! Browse our site to see what our community is talking about and find issues important to you.

Join in and share your stories. After you feel comfortable with our site, register to share your thoughts on a regular basis.

Stay secure. Remember that our site can be viewed by anyone on the Internet. With the exception of our registration and personal pages, search engines are available within this site. To guard your privacy, follow these simple rules: do not share your address, phone number, details about your family, or anything else you would feel uncomfortable with others reading. If you post your personal email, be aware that you may receive spam e-mail from spammers who gather addresses off of the web.

Read and react to posts with care. If you don’t agree or are offended by someone’s post, take a step back and think before you reply. Since we can’t talk in-person to each other, we must recognize that we may be misunderstanding stories or posts. Please be sensitive to others’ feelings and ask for clarification before acting out.

Search before starting new topics. To keep our message boards easy to use, please use the search bar to locate topics of interest before starting a new thread. If you start a new thread, please use obvious subject headings and words that will catch the attention of others. Topics will be archived after 21 days of inactivity. To view past topics and posts, click on archive topics within each of the forums.

Stick to our guidelines. To keep this site safe for everyone, please do not post: doctors' names, treatment facility names and treatment specifics, contact information for others without their consent, links to websites with uncertain content or advertisements, requests for fundraising, items for sale, requests for study, survey and/or questionnaire participation or provocative information.

Sharing photos. Please use good taste and appropriate images when adding photos to your profile or personal stories. Photos should be in .jpg format.

Not following the rules? Crohn's & Colitis Community moderators routinely scan the message boards and will delete tasteless posts. If you post inappropriate messages or pictures or use offensive language in a post on multiple occasions, you will be notified via email and your account will be inactivated.

Report foul play. Help the Crohn's & Colitis Community moderators by reporting anyone that posts inappropriate messages or pictures by clicking the 'Report Abuse' button under the message or emailing ccfacommunity@ccfa.org.

Questions or concerns? Please feel free to email us at ccfacommunity@ccfa.org with any questions or concerns. We want you to feel comfortable here.

Terms & Conditions. By posting your story, questions, concerns and other information on the Community, you grant the Crohn's & Colitis Foundation or its authorized agent permission to publish, reproduce, record and use your stories as Crohn's & Colitis Community or the authorized agent sees fit in any medium or forum in a manner which helps to further the Crohn's & Colitis Community mission. You agree to release and hold harmless Crohn's & Colitis Community from any and all liability by any third party that may arise from the release of information to any third party or by any third party and agree that all text and other content made by you, for you or the person for whom you are the parent/guardian, shall be the exclusive property of Crohn's & Colitis Community. The Crohn's & Colitis Community cannot verify every claim made by a third party contributor to our Community and is not responsible for the authenticity of information posted.

Thank you! The Crohn's & Colitis Community is successful because of members like you!

Thanks!
The Crohn's & Colitis Community Team

*Any postings on the Crohn's & Colitis Community site should not replace your physician's advice. Always check with your personal physician before taking any action regarding your health.