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.

Previous Topic Next Topic

Need Advice or Opinions

Thu, April 14, 2016 8:51 PM

So I have UC and I have tried multiple pill medications and failed due also to having a serve gag reflex, recently have been on the remicade and prednisone but my immune system is so low now I practically have no immune system. Recently been in the hospital due to cellulitis on the right side of my face, mersa in the nose, vre in th butt. I've also had c diff 3 times. I've been in the hospital about 7 times , 5 colonoscopies. So due to my recent hospital visit my doctor classified me as a remicade failure. Just got out of the hospital a day ago and they did a flexi colonoscopy and they said my colon looked better but its still bad so the surgeon wanted to hold off because it was giving miss signals plus ive gained 10 pounds. Now there saying they want to continue remicade double my dosage and make my immune system even lower than what it already is. This is where I've hit a snag. They say it's my decision to either continue remicade or do surgery. If I do the remicade I get seven lower immune system, there taking me off the prednisone, I'm having an imense amount of pain every time I go to the bathroom where I'm crying , shaking, sweating, but my stool is forming, being mushy, liquid. They can't give me anything for the pain because anything they give me either leads back to c diff or even lower immune system. Or I can do the 3 part surgery for the j pouch and deal with a bag for a short time, pain after surgery, eventually be able to move on with my life with no constant pain, but I've never had surgery befor, once it gone and you can't go back, and I'm only twenty. So I'm trying t decide what in the world to do .

criggs
Joined Feb 21, 2016

Tue, June 07, 2016 1:46 PM

Reply posted for criggs.

Hi Criggs, Hope you are doing well. I'm not sure if you have made your decision but I just wanted to share with you I recently just had my colon removed two weeks ago. I suffered from UC and all the meds and biologics were not working. I am still tapering off prednisone which was the only thing keeping me from flaring again. After 20 years I finally made the decision to do the j pouch surgery. I had the option of surgery or try entyvio. My body is still healing and it's not an easy journey but I'm hopeful it will work out for the best. I have a temporary ileostomy right now and it's def an adjustment but it's also liberating from not being on the toilet in pain most of the day. I wish you the best in whatever you decide.

goofygutz
Joined May 24, 2013

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.