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

Pre-takedown concerns

Tue, September 18, 2012 8:28 AM

My second takedown surgery is a week and a half away (had to go back to an ileostomy for a few months due to leaks in the j-pouch) - and have some concerns about symptoms/sensations I've been experiencing:
1) Phantom rectum *several* times a day - passing a lot of mucus, and need to do so urgently at times. This is much more frequent and severe with the loop ileostomy than it was with my previous end ileostomy. Worried that if I feel so much pressure and urgency when there is just mucus in the j-pouch, how bad will it be when the j-pouch is actually functioning as intended?
2) When I've been sitting for a long time, I feel the sensation of a weight dropping in my lower abdomen when I stand up. This concerns me because it is similar to what I was feeling (although to a *much* lesser degree) when I had the j-pouch leaks. Also, when I have tried to jog, it feels like everything is bouncing around in my abdomen (I picture marbles being shaken in a jar).
Has anyone dealt with similar symptoms/sensations and can put my anxiety to rest? I think I may be expecting too much, and that there is perhaps a "new normal" that I'll need to assimilate to.
Thanks in advance for any feedback and/or words of encouragement!

amandanl82
Joined Sep 10, 2012

Sun, September 30, 2012 8:27 PM

Reply posted for AmandaNL82.

1) I had the same concerns with the phantom rectum and thankfully it was not worse after takedown. Maybe because now something was actually coming through but the urgency issue did not stop for me until at least 4 weeks post takedown. The first month urgency was a big issue for me but now only 3 month post takedown I do not have any problems.

2) I'm not sure I know the feeling your describing when sitting and then standing but I did also feel like something was bouncing around on the inside when I wore my bag. Once I had surgery the feeling went away. I was obviously sore in that area but I no longer felt like my insides were moving all around. I am currently 3 months post takedown and I exercise with no restrictions including running and stomach exercises and I do not have the feeling anymore.

lisaqh
Joined Nov 18, 2011

Related Topics

Small bowel resection

jess123
Joined Jan 9, 2022

Hi, I'm preparing to have an ileocecal resecti....

read more

Flap Surgery

Kwarner1charter
Joined Feb 14, 2023

Had surgery on 10/27 after being in the hospital m....

read more

Jpouch Surgery

guillermo80
Joined Oct 11, 2016

I just had my first surgery out of three stage sur....

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.