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.

Thinking about surgery

Fri, May 15, 2009 12:00 AM

I was diagnosed with UC over 15 years ago. I have been on every medication you can think off. Just last week, my doctor started me on Remicade and it I think it went well. But I have been reading so many horrible side affects from it, I begining to wonder if its worth it. I will never be cured. I am to the point in my life that I have had it and I am done with UC running my life as well as spending all my time in the bathroom. I am ready to find a great surgeon so I can get my life back. The only problem is that I live in Montana, and there are no GI surgeons here. I will have to travel far in order for treatment. Money, like for most of us, is super tight. I am worried that with only one income for a few months will be even more devestating for myself and my family. We are at wits end already! Is there any grants or scholarships out there? I can't keep going on living like this. There has got to be something better out there. Thanks for listening.

lifebefore22
Joined May 14, 2009

Sat, May 30, 2009 11:21 PM

Reply posted for lifebefore22.

I am in your exact position. After 9 days in the hospital with a severe UC flair I am at the point of starting Remicade. Everything else has failed especially playing the steroid roller coaster. I am deathly afraid of starting Remicade with all its side effects and the life I will have taking it - will I always be sick with no immune system? What if the swine flu comes back - do I have to live the winter trapped in my house because I dont' want to be the patient you read who died because of an underlying health condition (due to the Remicade).
I'm seriously thinking that surgery would give me a more "normal" life.
But I am deathly afraid of making that "final" decision.
I am sooooo depressed at the choices left to me.
I've been dealing with UC for 5 years with not much remission and I'm at the end of the line, mentally and physically. It's funny how the "horror" of surgery a year or two ago suddenly seems like it might be the only thing to have my life back. This disease sucks.

hertelcl
Joined May 30, 2009

Sat, May 16, 2009 11:57 AM

Reply posted for lifebefore22.

I know exactly how you feel!!! I am in the same boat right now. I have been through 3 remicade treatments so far, but I am still pretty much the same. I have had some chest pains and shortness of breath since I began the remicade. I can't say that I disapprove of remicade as I have spoken to people that have had great success with it. It just doesn't seem to be working for me. I have opted to get the surgery and will be getting a 2 part surgery ( ileostomy - j pouch ) on Wednesday, May 20th. Have you tried a Probiotic? This has seemed to help me. I also would suggest a liquid vitamin B. This has helped me with dealing with the disease ( mentally ). They say that it takes 3 remicade treaments before you begin seeing results. Hang in there and good Luck!

rifles96
Joined May 7, 2009

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.