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Can anyone give advice on fistula surgery results

In November 2009 I was diagnosed with Perianal Crohns, I have an anal fistula. I am about to have a fistulotomy.

I am terrified....S

Reply posted for suzie.

Thank you for introducing me to this subject through your article. I want to introduce you to a game that I really enjoy. 

Surgery for an anal fistula usually takes around an hour, but a person will need to spend some time in the hospital before and after to prepare and recover.

If the fistula is small and shallow, a person may only need a local anesthetic during the procedure. Otherwise, a surgeon will put them to sleep using a general anesthetic.

During the fistulotomy, the surgeon will make an incision to open up the fistula.

 Reply posted for lizchurch03.

Thank you for that information! I will ask my surgeon about that as well. It's nice to have some help with this site. Taking control of your health is such a huge part in how well we can control it.

 Reply posted for Jamiemack.

Jamie~

I also had that type of fistula surgery about 8 years ago before I was diagnosed with Crohn's.  You're right, it is the most painful thing I have ever experienced.  However, since being diagnosed and going to a surgeon that deals with Crohn's patients, I have had setons put into the fistulas to let them drain without cutting the tissue.  Much better to deal with.  I had almost no pain after the surgery and it keeps the tissue from being damaged.  It's safe for Crohn's patients.  Thanks!

~Liz

 Reply posted for Suzie.

Glad to hear you are doing better Suzie.  I am doing well.  Just keeping up with my Remicade infusions to stay in remission.  I have seen some people on here talk about the Aloe Vera juice, but I don't know anything about it.  I'll have to check it out.  Take care!

~Liz

 Reply posted for Suzie.

Do not get Fistula Surgery if you have Crohns Disease! I unfortunately had a fistula and a few hemmroids removed over a year ago and it was the worst thing I ever did! It was the most painful experience of my life. I was literally screaming at the top of my lungs every time I had to go to the bathroom. I am shocked that my neighbors didnt call the police on me. It sounded as if I was being murdered! My doctor said I would only need 3 days to recover and it ended up taking me almost a month.

After that, I went to a new doctor ( a much better one!) and a new surgeon only to find out that people with Crohns disease should never have surgery to remove any fistulas or hemmroids. We do not recover like most people because we have a disease that makes us go to the bathroom more frequent. It can also weaken and damage the anus permanately and cause leakage. It was the worst experience of my life and I am paying for it everyday. PLEASE GET A SECOND OPINION!

 Reply posted for lizchurch03.

Liz how nice of you to check on me. Thank you

My apologies for not getting back with the  good news. I do not have to have surgery. I am not going on Remicade yet

I have Chronic Active Proctitis along with Perianal Crohns. The Doc says it would not be wise to have surgery at this stage.

Amazingly this past two weeks, the fistulae are no longer painful, they have stopped draining all the time, only occasionally now. They appear to be shrinking and I feel better than I have done in over a year.

I cannot figure out what it is. It could be the antibiotics Cipro and Flagyl.

The only other change is, I am taking Aloe Vera juice daily. Often 3 x 2oz with OJ. I also use pure Aloe Vera Gel on my bottom to soothe the irritation which is continually there. It has practically cleared up completely.

I go back to the Doc in 3 weeks for a check up.

How are you doing. Are you having some good changes for the better.

It would nice to hear from you to know how you are.

Take care...and thx so much for checking in. All the best....Suzie

 Reply posted for Suzie.

Hi Suzy!  Just checking in to make sure that everything is going ok.  I hope you are doing well!

~Liz

 Reply posted for lizchurch03.

Many thx again Liz, your information is so helpful.

I am going for an MRI tomorrow 3rd March.

I will then have another appt with the Gastroenterologist on 10th March

He has already suggested using Humira in preference to Remicade for my treatment.  So I will have to wait a little longer for a definite answer. I am now back on the antibiotics Cipro and Flagyl..I must say with in but a few days of taking them, I do feel less pain and there is not as much drainage coming from the fistula.

I will definitely let you know how all this goes for me and what the final treatment will be.

Glad you are there Liz. Many many thanks and kind regards S

 Reply posted for Suzie.

Hi again Suzie!  I hope I answer all your questions below.

1) I started Remicade soon after I was diagnosed so I didn't really have any other meds to stop taking.  I did take some antibiotics (Flagyl and Cipro) for a little while, but I had a lot of problems with yeast infections so I didn't stay on them too long.

2 & 3) No, I do not feel the seton at all.  And it does not interfere with BM's.  Since the seton keeps the abscess open, you will have drainage.  I usually wear a pad.  Even with the pad sometimes I would have chafing from the drainage.

4) No, I'm not British.  My surgeon always referred to it as my "bum" and it caught on.  :)

Let me know if you need to know anything else.  Good luck!

~Liz

 Reply posted for lizchurch03.

Another BIG thx Liz for the valuable information. That has made me feel more confident and more aware of what to expect.

I just got the news today that I will be able to see another surgeon this coming Friday, my colon surgeon would like to get some procedure going sooner rather than later.

When you started the Remicade, did you stop taking other medications, like the Asacol etc.,?

Two more questions, can you feel the seton? Does it interfere with Bm's

Are you British, it made me smile when I read the word 'bum'

I am British you see....look forward to your answers, many many thanks. Best regards S

 Reply posted for Suzie.

Yes, I have been on Remicade for about 18 months and I think it has helped me a great deal.  My last colonscopy showed so much improvement, you couldn't even tell I have Crohn's.  Although that is encouraging, I saw my surgeon a couple of weeks ago to see if she was going to remove my last seton (I had a total of 3 at one time).  She told me it was my choice, but it is likely that I would re-develop another abscess in 6 months-2 years.  I chose to keep the seton.  I don't want another abscess and if having a tiny tube in my bum is going to save me from that then it is a small price to pay.

The Remicade infusions are not bad at all (though costly, check with your insurance company).  I go every 8 weeks and watch TV and talk to the infusion nurse while my IV drips.  Since it lowers my immune system, I just take extra precautions to stay away from sick people and use hand sanitizer, but I don't let the worry run my life.  I have only had one 24hr stomach bug and one cold since starting Remicade and I think it is because I am cautious.  Let me know if you have any other questions.  It's nice to know that you are not alone and someone else understands your situation.  :) 

~Liz

 Reply posted for lizchurch03.

Thx Liz for the encouraging reply.

I am not sure which surgery I will undergo. After my visit yesterday, there is another fisula to contend with. I will see another doctor at the beginning of March, he is a gastroenterologist. He and the colon surgeon are working together to eventually help me.

Do you take Remicade? I am currently taking Asacol 6 x 400mg per day. The doctor has recommended Remicade. Any advice or comments on that procedure? I appreciate your input. S

 Reply posted for Suzie.

I have had several fistula surgeries.  Eight years ago (before I knew it was Crohn's) I had surgeries where they basically cut into the fistula to let it heal itself from the inside out (left the incision open).  Post-surgery was horribly painful.  Every BM was the worst pain I have ever had.  The largest incision was 4 inches long and took weeks to heal.  Because of that experience, I lived with the pain of abscesses for 7 years until I couldn't take it anymore and went to a different colon-rectal surgeon.  This time the surgeon inserted flexible plastic tubes (setons) through the abscess to help it drain and heal on the inside.  This was a miracle because I had almost zero pain after the surgery.  It is also less harmful to the anal tissue.  Do you know which procedure you are going to have done?  I definitely recommend the setons.  Good luck!