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.

upcoming surgery

Sat, November 01, 2008 12:00 AM

Hello,

I am new to the forum, but old to Crohn's. I was diagnosed in 1983. The disease has impacted almost every aspect of my life. I have tried all of the meds, and had about three good years with Remicade.

Nothing is working at present and they have thrown the kitchen sink at me as far as meds go. I saw the surgeon with my wife and it looks like a proctocolectomy.

I'm really hopeful that this will help me get my life back.... I know it is a last resort. The surgery is scheduled for December 15th and I'm nervous as can be. Any support or feedback would be greatly appreciated.

Thanks,

Rob

robbiec
Joined Nov 1, 2008

Wed, November 12, 2008 2:29 PM

Reply posted for mtmcdaid.

I read your blog and I too have severe UC for 13 yrs. Can't wait to get off prednisone and then consider surgery. I was told there a re a few ways to do it. A one step procedure w/ a j pouch or an outside bag for a short time and then another surgery to put the pouch inside. I need to understand more about your great success and procedure.

Your blog has been encouraging but I am soooo scared.

satriale
Joined Oct 16, 2008

Mon, November 10, 2008 1:00 AM

Reply posted for robbiec.

Rob,

As someone who had UC for 16 years, I can tell you that surgery CAN be a blessing for you and life CAN be TOTALLY fulfilling.

I have had my ileostomy for 36 years, since age 18 and there is NOTHING I cannot do. Itravel, play sports, have a wonderful intimate relationship with my wife, work full time and volunteer for a variety of causes.

I am an officer with the United Ostomy Associations of America and suggest that you contact us to see how WE can help YOU.

I can be reached at 312-466-3683

The United Ostomy Association of America is an organization that helps people who have had diversionary surgery cope and adjust to life afterwards. Their # is 1-800-826-0826. Call to see if there is an affiliated sup[port group in your area

Dave

rudyman22
Joined Nov 10, 2008

Tue, November 04, 2008 7:22 PM

Reply posted for robbiec.

Rob,

I am empathetic to your situation. I was initially diagnosed with UC in 1996 but was re-diagnosed with Crohns when I developed fistulas. After years of going through all of the meds and never knowing how I was going to feel from one day to the next, surgery was the only thing left. Although I was nervous, I actually felt OK about it because I knew it was the only thing left to do. In January, 2007 I had a total colectomy with and ileostomy.

There is no doubt in my mind that the surgery was the right thing for me. Today I am 41, married with two young kids and I am very active. I participate in triathlons, umpire baseball and referee basketball. I eat and drink whatever I want. I can confidently say that I would not have been able to do any of that pre-surgery. The first couple of months after the surgery are tough trying to get into the routine of things and figure out what works best for you but once you have it down, it’s pretty straight forward. There is definitely a learning curve and my experience is that most of the stuff I learned I figured out on my own.

If you have any specific questions, I’d be more than happy to tell you what I know.

I know it’s a trying time but you can be confident 2009 will bring better times!

-Mike

mtmcdaid
Joined Nov 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.