Hi everyone. I got my J-pouch back in 1997 because of UC. Things were pretty good for years except for some pouchitis episodes here and there. Then last year in April the doctors told me I have Crohn’s disease in my pouch now. I’m getting Entyvio infusions monthly.
Everything got worse this summer. First I had terrible cuffitis in June. By late July I developed a really deep abscess near my rectum that needed to be drained. Then another abscess formed on the opposite side and they were connected somehow. The surgeon put a Penrose drain through both spots and stitched it in place to keep everything open.
A third abscess appeared under the first one. I got an MRI but it didn’t show any fistula at that point. They drained the third one and connected it to the other two with more drains. During one procedure my colorectal surgeon used hydrogen peroxide in the drainage sites and found a small fistula going to my anal canal. It’s located below my pouch and the connection area. She put in a seton drain and wants to send me to another specialist.
The scary part is she made it sound like getting a permanent ostomy might be my only choice. But from what I’ve read online that doesn’t seem right, especially since my pouch looks really healthy and isn’t affected by the fistula.
Has anyone dealt with something similar? What treatment choices did your doctors give you? I’m really tired of dealing with these abscesses. I’m not even taking antibiotics right now. I can’t use Ciprofloxacin because I have Ehlers Danlos syndrome and there’s a warning about connective tissue problems. Augmentin doesn’t help much but I feel like I should be on some kind of antibiotic. My first abscess was two months ago and still hasn’t stopped draining. I just had another one drained yesterday.
Twenty-six years with your pouch and it’s still healthy? That’s actually remarkable - means your tissue quality is still good for repair options. I dealt with similar cascading abscesses about four years post-surgery. What you’re describing - one abscess leading to another, then connections forming - happens when infection finds the easiest path through inflamed tissue. Your surgeon found the fistula with peroxide because imaging often misses these small connections until they’re bigger. Here’s what nobody told me: Crohn’s changes everything compared to UC cases. Healing takes way longer and needs aggressive medical management alongside surgical planning. That Entyvio needs time to work. Most fistula specialists won’t attempt definitive repair until your Crohn’s inflammation is controlled. For antibiotics with EDS, I’ve seen patients do well with metronidazole plus something gentler than Augmentin. Find what suppresses infection enough to let the seton work without causing tendon issues. Two months of drainage isn’t unusual for complex cases, but you absolutely need antibiotic coverage to prevent spreading. Push hard for that specialist referral - someone who specifically handles IBD-related fistulas, not just general colorectal surgery.
What you’re dealing with sounds incredibly tough, and I get why you’re concerned about the ostomy recommendation. I went through something similar about eight years after getting my pouch, though mine was UC-related rather than Crohn’s conversion. The big difference was I had multiple specialists look at my fistula tract before making any major moves. You absolutely need that second opinion from a fistula specialist. Some colorectal surgeons are pretty conservative and jump straight to ostomy recommendations with complex cases, especially when Crohn’s is in the mix. But there are other options - fibrin glue injection, advancement flaps, staged repairs - depending on your anatomy. For antibiotics, I had good luck with metronidazole when cipro wasn’t working, though I know it’s rough long-term. That continuous drainage really needs antibiotic coverage to prevent more complications. Have you talked to your gastroenterologist about alternatives? They sometimes see the medical management side differently than surgeons when it comes to exploring other surgical options.
The Problem: You are experiencing recurring abscesses near your rectum, connected by fistulas, following a J-pouch surgery in 1997. You have Crohn’s disease in your pouch, are receiving Entyvio infusions, and are concerned about the possibility of needing a permanent ostomy. Your current antibiotic options are limited due to Ehlers-Danlos syndrome.
Understanding the “Why” (The Root Cause): Recurring abscesses and fistulas often indicate persistent inflammation and infection, particularly in the context of Crohn’s disease. Crohn’s disease, unlike ulcerative colitis, tends to involve deeper tissue layers, making healing more challenging and increasing the risk of complex fistula formation. The fact that the abscesses are interconnected suggests a pathway of infection spreading through the tissues. While imaging techniques like MRI can miss small fistulas, the use of hydrogen peroxide during a procedure can effectively identify these small connections. The persistent drainage and the need for repeated drainage procedures indicate a failure of the infection to fully resolve. A permanent ostomy might be proposed as a last resort if other treatment options fail to control the infection and allow for successful healing.
Step-by-Step Guide:
Seek Specialized Expertise: The most crucial step is obtaining a second opinion from a specialist experienced in treating IBD-related fistulas. A colorectal surgeon who specializes in Crohn’s disease and complex fistula management offers the best chance of finding a non-ostomy solution. Their expertise extends beyond general colorectal surgery, focusing specifically on advanced techniques to preserve the J-pouch whenever possible.
Document and Quantify: Before your consultation with the fistula specialist, meticulously document your symptoms. Track daily drainage amounts, pain levels, medication timing, and any observed changes in your condition. This detailed record provides the specialist with objective data, enabling more informed decisions and treatment planning. Consider using a system to automate the collection and organization of this information.
Advocate for Appropriate Antibiotic Treatment: Given your Ehlers-Danlos syndrome, find an antibiotic regimen that effectively combats the infection without causing adverse effects on your connective tissues. Metronidazole (Flagyl) is a frequently used option for treating anaerobic bacteria associated with these types of infections and is a gentler choice compared to Augmentin or Ciprofloxacin. Work closely with your gastroenterologist and the fistula specialist to determine the most appropriate and safest antibiotic strategy.
Explore Treatment Options: Discuss all available treatment options with the specialist. These may include:
Seton Placement (if not already done): This is a temporary measure to allow drainage and reduce pressure.
Fibrin Glue Injection: A minimally invasive technique to seal the fistula tract.
Advancement Flaps: Surgical procedures that use healthy tissue to cover the fistula site.
Staged Repairs: A multi-step surgical approach that allows for healing between procedures.
Manage Crohn’s Disease: The underlying Crohn’s disease needs to be effectively controlled to allow for healing. Work closely with your gastroenterologist to ensure you are receiving the most appropriate medical management for your condition. This may include optimizing Entyvio infusions, other medications, or dietary adjustments.
Common Pitfalls & What to Check Next:
Delaying Specialized Care: Don’t delay seeking a consultation with a fistula specialist. Early intervention significantly increases the chances of preserving your J-pouch.
Insufficient Antibiotic Coverage: Persistent drainage indicates the need for aggressive antibiotic therapy to control the infection. Don’t hesitate to discuss alternative antibiotic options with your doctors.
Ignoring Medical Management: Crohn’s disease needs to be managed actively. Work with your gastroenterologist to ensure optimal control of inflammation before and during any fistula repair procedures.
Unrealistic Expectations: Complex fistulas often require multiple procedures or staged approaches. Be prepared for a longer healing process and anticipate the possibility of setbacks.
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Complex fistulas suck but they’re fixable most of the time. Had a similar nightmare 6 years post-op when my ‘healed’ UC turned out to be Crohn’s all along.
That hydrogen peroxide flush was actually brilliant - maps the tract better than MRI half the time. Only one small connection to your anal canal? That’s honestly good news.
Your surgeon jumping straight to ostomy talk is a red flag. Most specialists try repair first, especially with a healthy pouch. The seton’s just buying time while inflammation calms down - it’s not actually fixing anything.
Took me three tries. Advancement flap failed. Plug failed. Finally did a two-stage where they cleaned everything out, let it heal for months, then tried another flap. That one worked.
With your EDS, try pushing for metronidazole over Augmentin. Flagyl tastes like death but it hits the anaerobic bacteria that thrive in these deep infections.
Get to that specialist ASAP. Don’t let this drain much longer without proper antibiotic coverage - the longer it goes, the harder it gets to close.
My pouch’s still going strong 8 years later. Yours will too.
Oh man, this sounds awful - sorry you’re going through this. I had similar issues, but mine started about 5 years after surgery. Don’t let them scare you into the ostomy yet! My first surgeon said the same thing, but Cleveland Clinic was way more optimistic about repair options. Setons can stay in for months while the inflammation calms down, then they can try an advancement flap or other techniques. Definitely push for that specialist referral and maybe try to get seen at a major IBD center if you can.
Your situation sounds just like mine about three years after my J-pouch, though I stayed UC the whole time. The big difference here is your pouch is healthy - that opens up way more treatment options. I had similar drainage problems and keeping everything completely clean and dry between procedures was a game changer for healing time. That continuous drainage needs aggressive treatment because it creates this vicious cycle where nothing can heal properly. For antibiotics with your EDS, metronidazole worked great for my deep infections when other stuff wasn’t an option. Tastes awful but it targets exactly the bacteria causing trouble in these spots. You really need that specialist referral. Regular colorectal surgeons often jump straight to ostomy recommendations because it’s their safest bet. A fistula specialist has way more experience with techniques that save your tissue. Since your fistula is below the pouch connection, you’ve got better repair options than if it hit the pouch directly. I’ve seen people with way more complicated cases keep their pouches through staged repairs and proper Crohn’s management.
Understanding the “Why” (The Root Cause): Recurring abscesses and fistulas often indicate persistent inflammation and infection, particularly in the context of Crohn’s disease. Crohn’s disease, unlike ulcerative colitis, tends to involve deeper tissue layers, making healing more challenging and increasing the risk of complex fistula formation. The fact that the abscesses are interconnected suggests a pathway of infection spreading through the tissues. While imaging techniques like MRI can miss small fistulas, the use of hydrogen peroxide during a procedure can effectively identify these small connections. The persistent drainage and the need for repeated drainage procedures indicate a failure of the infection to fully resolve. A permanent ostomy might be proposed as a last resort if other treatment options fail to control the infection and allow for successful healing.
Step-by-Step Guide:
Common Pitfalls & What to Check Next:
Still running into issues? Share your (sanitized) config files, the exact command you ran, and any other relevant details. The community is here to help! Let us know if you’re trying to use Latenode for this!