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Hi,
I have Crohn’s and recently started to flare again and got tested so that I could be started on some form of biologic. My tests showed that I had multiple fistulas connecting different systems. I got told that to treat these I had to have surgery really soon but I am still waiting to talk to the surgeon for details, so my question is what should I expect and is there anything I can do in the meantime to feel a little bit better?

Reply posted for redheadtn.

You’ve had a lot going on.    I’ve had a number of surgeries to put in drains.  That has given me relief.  These fistulas are the damnedest things.  I had to have several more surgeries because they started draining into my testicles, which swelled up to softball size.  When I went to my urologist, he did surgery that same day.  Thankfully, I’ve been doing pretty well lately except for an abscess on my hip that flares up often.  I’ve been either blessed or cursed with a high tolerance for pain.

Reply posted for lady275.

It’s so funny that I visited this site for the first time tonight and this is the first post I read. I am currently recovering from my fifth surgery related to fistulas and a perirectal abscess. It’s 1:30am and I am taking a warm bath, which is really the only place that I am comfortable. I hope your procedure went well and your condition is improving. 

If anyone else is reading this post and looking for similar answers, I hope this helps. I was diagnosed with Crohn’s in April 2, 2018, 3 days before my 25th birthday. 4 days later I had emergency surgery to drain a huge perirectal abscess and the surgeon placed a seton drain, which I like to personify and treat like a friend because it saved me from a lot of pain. I had another surgery in July to clean things out and place a new drain, a new friend. At the beginning of December, I had surgery to remove the drain and close everything up. I thought that was going to be the end of the abscess chapter in the book of my life. Fast forward to now, the surgery failed and I have since had two emergency surgeries to drain abscesses that had reformed. I thought I was going to be starting 2019 drain free, instead I have 2 new seton drains. More friends to love I guess. And I think that’s the biggest lesson I learned. You never know what’s going to happen and, in the words of some reality show host, expect the unexpected. I’ve missed a total of 6 weeks of work and counting due to these procedures and recovery, so I think it’s important to build some sort of understanding with your place of work or school because you never know what’s going to happen.

Also, not to be a downer, but these things are really painful and it takes a while to heal. Don’t get frustrated with yourself or your body. It’ll take time, but things will get better and if they don’t, talk to your doctor. Find a GI doctor and colorectal surgeon that you trust and who will give you the attention you need. Don’t be afraid to ask questions, none of them are dumb. My one warning to anyone out there is: you are going to want to spend a lot of time sitting on heating pads, heated blankets, seat warmers, etc. Be careful!! You can develop something called erythema an igne. It’s a rash caused by prolong exposure to heat sources like the ones listed above. It can cause permanent skin damage. Both of my butt cheeks look wild. I’m hoping it goes away, fingers crossed. I think it can also increase your risk of skin cancer on a more serious note, so be careful. 

I am so so sorry to write an essay. I think this is just me venting. It’s late on a weeknight, so everyone is asleep and the internet feels like the best place to share the running monologue running through my head. I would love to hear about others experiences and what helped them most with pain management. 

Thanks!

Reply posted for charbs.

Hi, hope you are on the road to recovery. I had a peri anal abcess drained by surgery that is not healing and the doctor thinks l may have a fistula. There is not much discharge and the surgical wound looks like a pin prick now. How obvious were your fistulas? Was it quite apparent that they were there? Thanks.

Reply posted for charbs.

I have multiple fisculas with Chrohns.  I had surgery last Nov that was supposed to be 4 hours that took 9.5 and they didn't inform my family what was going on.  They put in a temporary illeostomy that i was supposed to have for 6 weeks.  I have now had it for 10 months.  I take Remicade every 6 weeks.  I have been on antibiotics so long that my joints were killing me and i am in my 40s walking like im 90.  The feeding tube drain site closed almost immediately.  the Gtube closed after they put clamps down my thoat via a EGD after 2 failed fistulagrams to fill in the jp drain site that evidentally now has a fistula.  They were supposed to do tests in oct and meet with the surgeon to reverse but my "emergency ct" that was done in August was JUST NOW read and they have pushed back and said i might need to drive 4 hours to the dr to discuss another medicine.  I am ready to find a new doctor and new surgeon as I feel like a human guinea pig... they are throwing spaghetti against the wall trying to see what will stick..... its just so depressing.  Please exhaust every single possibility before doing surgery!

Reply posted for lady275.

Fistulas are tough. There are a few newer treatments, but bowel resection (surgery) is the most common and most effective. Are any of the fistulas external, meaning they leak on to your skin? If so, you can use ostomy appliances to collect the drainage in the meantime. Getting into a colorectal surgeon, specifically one who specializes in IBD is critical. I hope you can get to someone soon!

Reply posted for lady275.

I had multiple fistulas that caused a lot of problems.  I had to doctor shop before I found a colorectal surgeon who would handle the problem.  He put drains in my butt, which for the most part have helped.  I needed that to work before they would let me get on biologics.