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.

The Unknow!

Mon, June 23, 2008 10:46 AM

Hello! I am 29 and have had Crohn's for 20 years. I had a colectomy in 2001, a revision in 04, and countless recto-vaginal fistula drainings beforehand. I was hospitalized at the end of April due to an abscess in my abdomen due to a fistula (they stuck a drain in me which I had for three weeks). When the drain was removed everything was fine for about a week. The small hole was closing up, however it re-opened and a CT found that the fistula came back! I am taking Flagyl and Levaquin to treat this, but go to the Dr. on Wednesday to discuss Humira. I just don't know if they will start me on that or recommend surgery. At this point the fistula is pretty uncomfortable and I have a lot of drainage. I feel bloated and really don't feel like eating. I am TERRIFIED of having another surgery for that fact that my last one was 9 hours long, I lost a lot of blood and ended up with a sac of fluid around my pancreas (later drained through interventional radiology). Have any of you guys had more than 2 surgeries? I know it becomes more difficult as scar tissue forms.... Anyone using Humira to treat fistulas?

Any input would be wonderful

ralexis
Joined Jun 20, 2008

Sun, June 29, 2008 3:12 PM

Reply posted for Ralexis.

Hi... I'm so sorry, I can't answer any of your questions because I've yet to go under the knife. I've been incredibly curious about the symptoms of recto-vaginal fistulas and seeing as you're experienced, I thought you would be the best to ask. It's a big fear of mine; that seems like the craziest part of the disease! Are they painful? How did you get diagnosed with them? Can you get them during remission? (Actually -- can you experience many of the extras of Crohn's when in remission, like fever, etc.?)

Thanks and sorry to be of no help to you. Good luck, darling. There is something I have that can be of use to you, actually, and to everyone, really: "The Inflammation-Free Diet Plan." It might help with pain. Even if you've got to juice, it'll help you learn how to put your body in a less inflammatory state without any negative side effects via knowing the Inflammation Factor of what you ingest. And if anyone has more up-to-date information than what that book provides, please let me know @ AmplusAnima@gmail.com.

Thanks so much.

=Carla

quarmla
Joined Jun 28, 2008

Tue, June 24, 2008 9:49 PM

Reply posted for Ralexis.

Hello Ralexis, your situation sound familiar, I have also had many fistulas and many drains some for more than a year. I also had lots of abcesses and surgeries to lance and repair or place drains, all of which pretty much are no fun. My opinion surgery always is less painfull and takes care of the issue quicker than meds can after you have the fistulas. Flagl never worked 4 me. Remicade was the only medicine that ever helped my fistula disease. When my disease was active I got fistula"s If I was in remission I had less problems w/fistula"s. I have been fistula free for almost 2 yrs. mostly I think because my disease has been quite for about that long, since my last surgery a total colectomy.

daniel3320
Joined Jun 24, 2008

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.