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Issues after complete surgery

Sun, February 25, 2024 6:00 PM

Hello,

I have had all 3 surgeries to complete my J-Pouch. This April will be 2 years since the last surgery. I have been having excruciating abdominal pain off and on every few weeks to a month. The only thing that seems to help is antibiotics. I can’t keep taking antibiotics. Has anyone else gone through this and can recommend a solution?

My other issue is I go 6 to 10 times a day and it takes a minimum 20 minutes on the toilet. Sometimes it has taken over an hour. Any suggestions would be greatly appreciated. I am basically stuck in my house because I have to have access to a bathroom at a moments notice. Sometimes there is urgency so I need an open bathroom.

Any advice, suggestions would be greatly appreciated as my GI and surgeon haven’t seen all these issues at one time. My GI is recommending biologics. There has to be someone out there going through what I am going through to help me.

Thank you,

Rolo

Rolo
Joined Feb 25, 2024

Wed, October 02, 2024 4:34 AM

Reply posted for Hanswnsend.

There are numerous athletes who are able to engage in physically demanding sports despite having an ileostomy or jpouch.

slope game

Hanswnsend
Joined Oct 2, 2024

Mon, July 22, 2024 11:02 PM

Reply posted for Rolo.

Also have you recently received an enterography? Make sure plumbing is looking good? Discuss with MD.

Sharadams1
Joined Jul 22, 2024

Mon, July 22, 2024 11:00 PM

Reply posted for Rolo.

Hi I have not had that surgery but I am shocked you are not on biologics. Get a second opinion with GI and Colorectal surgeon.
I've tried 4different biologics. Finally Rinvoq worked for me. It targets inflammation. I stayed on Stelara for too long and was having accidents 2-6 per day. M second opinion doctor is the one who told me to change meds. Thankful for him but sadly a day late and dollar short. Too much damage and now need proctectomy. Rinvoq stopped this inflammatory output. Good luck.
How is your eating? See a nutritionist. There are live probiotics daily pills to take. Your gut micro biome is hugely important.

Sharadams1
Joined Jul 22, 2024

Thu, May 30, 2024 3:15 AM

Reply posted for Nikhil9313.

Recovering from surgery can be challenging, and post-operative issues are not uncommon. It's crucial to communicate openly with your healthcare team about any concerns or complications you're experiencing. Many hospitals have a patient feedback system in place to address such matters promptly. Don't hesitate to voice your concerns and seek support – your well-being is the top priority. https://lazymonkey.in/healthcare-hospital-patient-feedback-system

Nikhil9313
Joined May 30, 2024

Tue, February 27, 2024 7:58 PM

Reply posted for administrator.

Thank you for the info. I was hoping to find someone that has gone through this that could tell me what worked for them. Maybe someone will read my post and be able to help. In the meantime I’ll check out what you provided.

Rolo
Joined Feb 25, 2024

Tue, February 27, 2024 12:02 PM

Reply posted for Rolo.

Hi Rolo,

Sorry to hear you are going through this. You are doing the right thing by keeping your surgeon and GI updated on your symptoms. We have a few resources for you to review if interested:
1. J-pouch webpage: J-Pouch Surgery | Crohn's & Colitis Foundation (crohnscolitisfoundation.org). This also includes a video and other information.
2. We have a Facebook group for J-pouch patients with IBD, here: (20+) Crohn's & Colitis Foundation J-Pouch Support Group | Facebook

If biologics are a new consideration that your doctors are proposing, here is some information that can help: www.ibdmedicationguide.org

administrator
Joined Oct 12, 2017

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