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.

Living w Crohns for 13 years, Doc wants me on a biologic now

Thu, August 05, 2021 9:37 PM

Hello all...

I was diagnosed 13 years ago (in terminal ileum) my symptoms were manageable enough that I didn't use any meds, not even prednisone. It was very mild with 1-2 flares a year.

10 years after diagnosis I started taking prednisone for flares which now would occur 3-4 times a year.

2 years after this I was having monthly flares and my doc put me on Entocort.

Entocort got me back down to 1-2 flares a year then out of nowhere I was hospitalized with a blockage last month.

CT scan revealed the blockage was due to activity in jununem (not terminal ileum where I was diagnosed)

A CT from 2 years prior showed a tiny area of activity near jujunem but small enough that doc wasn't concerned.

Essentially, despite only having 1-2 flares a year - this area in my jejunum has gotten worse. I'm having a dbl balloon enteroscopy tomorrow to see exactly what's going on.

My doctor is strongly encouraging I go on a biologic. The entocort has been controlling the symptoms but as the CT reveals, the disease has spread anyway.

I feel fine 95% of the time with no symptoms at all so the idea of going on a biologic w all the side effects that come along is hard to stomach.

If I were experiencing regular flares and life was unmanageable then I would accept the biologic side effects as worth the price for controlling the disease - I feel like I'm going on a biologic because of imaging evidence not symptoms - essentially taking a drug that has great potential to make me feel worse.

does anyone have a similar story?

Breaktheory
Joined Aug 5, 2021

Sun, April 03, 2022 6:00 PM

Reply posted for Breaktheory.

Hi, I have Crohn's disease and I started on the
iv infusion medicine Entyvio. It is a iv infusion medicine
that I get every 8 weeks at Davis hospital day surgery department here in Elkins, WV. There are commercials on tv telling about it. That is how I found out about it while I was visiting my mom in Virginia. and so far it is working
well for me. I also exercise. Doing these to things helps.
sincerely;
Heather

midnight0675
Joined Apr 3, 2022

Wed, August 11, 2021 7:43 PM

Reply posted for Breaktheory.

I've never missed a day of work

rfi123158
Joined Aug 9, 2021

Wed, August 11, 2021 4:54 PM

Reply posted for rfi123158.

With the treatment at it's worst do you feel unable to work?
Curious which biologic you are on

Breaktheory
Joined Aug 5, 2021

Mon, August 09, 2021 6:48 PM

Reply posted for Breaktheory.

I started taking a biologic 3 months ago. Sometimes I feel great, sometimes I don't. Not sure what to say other than I'll try anything if it can help keep me from having a surgery. My Crohn's has always been mild and while I felt okay most of the time, my ileum was taking a beating and that you can't see..... Good luck

rfi123158
Joined Aug 9, 2021

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.