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.

Previous Topic Next Topic

Medication > Surgery > Life after?

Mon, April 11, 2016 8:01 PM

Hi my name is Trevor, I'm new to the forums! I wanted to give a quick rundown of my situation, because I'm looking for answers. I was diagnosed with crohns early 2010, even though i knew i had it years before. No doctor would test me for it or believe me. Finally we make it to a specialist. Did a colonoscopy and low and behold they found it, really bad too. Majority of my crohns was located where the large and small intestines meet. I started prednosone and entocort they worked pretty well but wanted to get off of them due to the nasty symptoms. I finally started Asacol HD 800, that seemed to control most of my symptoms. Had a brief issue with insurance and them not covering Asacol any more. This caused me to slowly ween myself off of it. For the last two years i haven't taken any medicine. I only had stomach pain once a month. I was living life. I went in to the ER because i had a pain in my lower groin area. Thinking it was a hernia, doctors did a CT scan. It was determined it was an abscess. The ct scan also showed some crohns complications . We did a MRI (but for crohns). They decided to go in and "look," once they got in they had to do a major surgery. I ended up having fistulizing crohns. Surgeon removed 18" of my small intestines and repaired 3 fistulas. Now im on the road to recovery and looking for advice. Doctors want to put me on Remicade or Humira and im so nervous and scared. Im really looking at natural options. Swiss diet, roberts formula, Primal Defense (probiotic) and maybe cbd oil. I want to get as much information as i can before my wife and I make this decision. Any feedback would be greatly appreciated.

ducote1126
Joined Apr 11, 2016

Mon, April 18, 2016 6:13 PM

Reply posted for ducote1126.

I feel very much with you I went through very similar just a lot more complicated which almost ended my life
It's known that every case of crohns is different so don't rely on my advice but in my particular case my doctor told me since there is a very high percentage of recurrence there is no need to be on immune suppresses if I'm willing to take a blood test every 2 month's
So I started with 9mg of entercort/budsonide and 500mg of Flagyl and as my blood results were good he weaved me off slowly.
after 2/12 years like this and after a colonoscopy that didn't show any active disease I'm not taking anything and I feel like a healthy person
Wish you luck hope you'll feel better soon 😊

crownsmaster
Joined Mar 30, 2015

Related Topics

Small bowel resection

jess123
Joined Jan 9, 2022

Hi, I'm preparing to have an ileocecal resecti....

read more

Issues after complete sur...

Rolo
Joined Feb 25, 2024

Hello, I have had all 3 surgeries to complete m....

read more

Ostomy Support

JohnWalsh
Joined Dec 11, 2023

Are there wound care experts or professionals that....

read more

Welcome to the Crohn's & Colitis Community!

This website is associated with the Crohn's & Colitis Foundation.

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.