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

Is a bowel resection really the answer for me?

Mon, June 10, 2019 9:47 AM

Hello all

i was diagnosed in 2011 - first with a barium swallow then confirmed with colonoscopy/endoscopy- it’s a relatively small 10cm segment in my terminal ilium...I’ve been surviving on prednisone which has gone from 2-3 times a year to almost every month to the point now that I’m having to increase my normal dose just to get by.

I have been adamant that I don’t want to start taking medication for this so after 8 years of steroids, my doctor is suggesting a resection. I have no problem doing this if it’ll really put an end to this problem. I’m going in for a CT scan this week then meeting with my GI to potentially schedule the surgery.

What I don’t understand is that although my crohns is in the terminal ilieum, my pain during flare ups is in my upper abdomen almost in my sternum. I obviously intend on discussing this further but now that the idea of surgery has become “real” I would be absolutely devastated if we went through it all only to discover it didn’t fix my issue - does anyone have any thoughts or similar experience? It just doesn’t add up that I would be having chronic upper abdominal pain from a diseased segment in the very lowest point of my digestive tract

thank you

jon

JonfromLA
Joined Jun 10, 2019

Sun, September 29, 2019 8:46 PM

Reply posted for JonfromLA.

I was just diagnosed with crohn's in my small bowel. My pain is in my right side abdomen, like where your floating rib is. It feels like something is trying to burst out of my body, a horrible pinch. When the pain is really bad I cant find a position that is comfortable. Its scary' I am a tough women's birthed 4 boys naturally' but this can kick my ass. You are not alone. I am going to Stanford hospital October 1st to talk to the best and figure out my plan. I have a son with u/c and I have watched him go through so much, thank God it's not pain, but a lot of treatments and meds. I am at a point in my life where I just finished two medical certifications and I am finally able to work in a field I have be waiting for. And now I have CROHNS.

Jaime143
Joined Sep 29, 2019

Tue, July 30, 2019 7:49 PM

Reply posted for phmokda.

I am a retired MD who developed Crohn's colitis three years ago at age 67. I was not on steroids but have been on Stelera for 15 months. I just had a flare up with a partial small bowel obstruction. It resolved with IV fluids and pain meds. Suregery is the LAST thing I want to consider.This flare was likely my fault after ingesting seeds that my IBD doc had warned me not to do. I would urge you to disucss this treatment with your doctor(s). Your pain in the upper abdomen is not uncommon and is what we call "rerferred" pain. The anatomic location of the diseased body part is not always accurate for location of pain. For example heart pains or angina are "referred" to the neck or back or left arm.

phmokda
Joined Jul 30, 2019

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.