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.

guidance please

Mon, June 08, 2009 12:11 PM

Hello. My brother has had Crohns for 11 years now. He is 26. He has had several doctors so many at this point I have lost track on how many. I recently found Dr. David Binion for him. He has been on and off of TPN(feeding tube) for about the last year. He is not getting any better. So we set him up to see this doctor who is in Pittsburgh, PA and we live in Green Bay, WI. Well he went there and Dr. Binion referred him to a surgeon. This will be his 2 surgery since having Crohns. He now has to have his colon removed or he will end up with Colon cancer within the next year. Has anyone else done this and did the disease go into remission? Any advice or help would be greatly appreciated.

kandiced
Joined Jun 8, 2009

Wed, June 17, 2009 12:00 AM

Reply posted for kandiced.

I'm so sorry to hear of your brother's challenge. I've had Crohn's since 1996, with annoying but livable symptoms...I dealt with it by being on Prednisone for 13 years. I just had a colonoscopy in April after miscarrying our second child, and the GI discovered a polypoid mass that showed abnormal biopsies, as well as dysplasia in other areas. I was suddenly advised by multiple doctors that the entire colon had to be removed, as cancer appeared imminent. Yikes!

I had the surgery on May 29th. The surgeon said the colon was such a "terrible mess", he didn't know how I was living with it. Odd, because I didn't think I felt that bad....I just drank a lot of caffiene to get past fatigue every day. Cancer or no, I think this was a really good thing and hope to feel better in everyday life.

The waiting was the hardest part. The recovery has gone well, although I have five abdominal incisions and they are still sore. I had a reconnection during the surgery - no bag! - and I only go to the bathroom once or twice a day. I eat a lot of fiber to slow things down, and seem to be able to eat anything I want already, even lettuce, without any nasty blowouts.

I think this was a real blessing in disguise, even though it's been tremendously scary.

Would your brother have to have the entire colon removed, and is a reconnection possible?

swimming girl
Joined Jun 17, 2009

Wed, June 10, 2009 12:00 AM

Reply posted for kandiced.

Before the surgery I could not gain weight and as time went on I was getting worst and worst. I had no energy. I was on a lot of medications, Humira, Asacol, Cipro, Flagy, Folic Acid, Fosimax, and Nexium. They were making me sick too. I had my colon and about five inches of my intesting removed. After the surgery I am 100% better. I can eat as much as I want. I have gained ten pounds, this is at week six after the surgery. I am back at work, I walk from two to five miles a day. I have no Corhn's simptoms today. I am off all the bad medications. I am on Nexium, folic acid and fosimax and vitamin suppliments. My quality of life really improved after the surgery. I hope your bothers will too.

ronkrson
Joined Aug 4, 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.