Fistula

I don't have experience with fistulas that are sneaky and stay on the inside like yours, but I've been through the surgeon routine enough to throw at least a couple things out there.... hopefully someone with a case closer to yours will follow along soon.

#1 How invasive is the surgery being performed, and what are the IMMEDIATE risks (i.e. puncturing something or the likes) I never feel bashful about asking the surgeon directly how many times he's performed the procedure and any complications that he's experienced. A surgeon is, in the end, a businessman, and you have the right to "shop around" if you don't feel comfortable. I can't stress enough how important it is that you feel COMFORTABLE with your surgeon if at ALL possible. A sore bum is enough to worry about, so you don't necessarily have to LIKE your surgeon, but you need to trust him/her.

#2 How successful is this surgery method for the problem at hand? I would get recurrence rates, for sure. SO many of the surgeries that are popular for crohnies seem to start a never-ending cycle of surgeries, so make sure this one is going to GET you somewhere.

#3 Get a defined "title" for the surgery (i.e. my experience is with peri-anal "Incision and Drainage" surgeries. Make sure you have a name for the surgery in case you feel like "googling" it or asking more surgery-specific questions. It sounds like a no-brainer, but there are so many different methods and names for this stuff... and surgeons like to look like they're in a hurry, but I don't care - take the time to get the answers, darn it... I've used the following line three times myself: "I realize that you are over-worked and spread really thin, but this is my body, and it's the only one I get. I have more questions."

#3 What medications are going to be administered in relation to the surgery and what are THEIR possible side effects (i.e. are they gonna shove you on steroids and if so, for how long... antibiotics, etc.) It's always good to know what they're "brewing up" for your belly and make sure that you're comfortable with their prescription plans.

#4 What alternatives to surgery do you have? The surgeon might think it's a "done deal", but you have a right to know if there's a chance that 4 months of a certain medication could accomplish the same end result, or if there is an alternative of ANY kind to this surgery. Getting sliced is usually a last resort, so make sure they're not jumping the gun.

I'm sure I'm forgetting stuff, but the last thing I can think of is to get all these questions answered, do some more homework, and then decide if you're ready to proceed. Don't let them boss you around and tell you that you have to schedule it for this week if you're not comfortable and prepared to do so. If you've got a good surgeon, and he answers all your questions and you feel confident that this is what needs to be done - then by all means go for it. But if you're hesitant, or still have unanswered questions, keep badgering someone until you have all the pieces you need.

I had a resection where they found a sneaky fistula like yours and had to remove it a year ago. The plan was a laparscopic surgery, simple resection at the terminal ileum and get rid of the appendix too. They got two of the four incisions done and saw what a mess I really was and had to open me up completely, about 10 inches. The surgery was supposed to be 2 hours, turned into 4. It helped alot, and I would do it again if I had to, recovery was about 6-8 weeks. But I'm sitting here waiting for insurance approval for Humira because the disease is back, active disease in my colon now. If I did have to have surgery again, there are few things I would make sure of this time: I want to be put on diflucan for yeast infections right away because of the antibiotics; I want orders in my chart that when I feel ready or have too much discomfort, then the catheter can be removed early (I had to threaten to rip it out myself last time, it caused a lot of bladder irritation that took longer to heal then the incision); I want to know what pain meds they will be sending me home with and I want it written in my chart (I had to deal with an on-call guy who discharged me. when I said I wanted percoset because it worked so well, he said it worked too well, he doesn't believe in prescribing them! He sent me home with 10 pills to last for 12 days!) I will make sure the surgeon sees my point of view that I have had enough pain and that pain wears me down, I can't heal effectively so I need good meds; I would make sure that the doc understands that I don't want to be rushed back to work full time, I could have used a week or two at part time.

I had fistula surgery a few years ago and I was told it was a success. Of course, I went for a second opinion just to be sure and that surgeon got pissed at me because he couldn't find any signs that I had a fistula at all...he thought I was some kind of weirdo :)

NBT

Hello I'm due a resection and also my bladder and lady parts has fused to my bowel too so I understand that horrific leakage thing!

I'm also waiting, still! for an operation.  As a fellow Brit I just wanted to wish you the best of luck with yours

BuzyBum--fistulas aren't likely to get better on their own...does your doc know about it? You may want to let him/her know it's worse and see what their course of action is.

hey you wishIwas and missuk, there no complaing about goverment run healthcare! why one of our politacal parties ahs that as a main goal for this country. any complaining about long waits and bad service wont get them very far....... just kidding of course ! ;0)... the more our country hears about things like that, the better chance we have of staving it off. like " my dad died waiting for his operation , but heck it was gonna be free!"

Hi Ivy, thanks I will email the site administrator. Just for the record, I wasn't trying to promote my website, i was just trying to help other people with fistulas, and I guess the more information and support they get, the better... I obviously don't make money off my website so don't need to promote it, just spreading the word and trying to help :)

I had a fistula and have a seton. My does not leak like everyone else's. Is something wrong with mine?

Hi got my Seton in on July 12 after having it lanced and drained the week before.  It drained for a few days after the Seton was placed in.  I was on Cipro and Flagyl for 10 days.  Am now on long term Cipro and Prednisone.

Fistula healed!! One of my screen names for another forum is hope4.

"Faith is the confidence that what we Hope4 will actually happen; it gives us assurance about things we cannot see." Heb 11:1

Since I got my abscess almost two years ago, I went through so much mental and emotional ups and downs. Depression for a few months and then acceptance of the whole thing. I always felt like I was living in one of my nightmares and couldn't wake up. But then again I have seen and heard worse online and on this forum. SI prayed for all of you. And hoped for healing for all of us. And so I finally accepted this disease, but was not going to give up on HOPE4 complete healing. Even if it was going to be sometime in the far future.

So 2 years ago a CRS placed the seton and I remember the her telling me something about incontinence, and that she didn't want to risk that for me. When I asked her "when can it be removed?" She looked at me like I was asking the hardest question in the world. She didn't have an answer. Then a year later the other CRS told me to leave it alone. I too kept asking "Why did I let this happen. How could I have prevented it. And many tears later I just decided to accept it and be glad it was not worse. But definitely hating it every bit of the way, but also glad that it made me a more humble person. I had a lot of faith that I would eventually heal, somehow. But didn't know how. I still had some hope things would get better, but didn't have any idea how. I truly believed it would be in the far future, but how far?


I realized the seton needed to be there to heal the fistula (which was as large as a man's fist) but now that the fistula seemed pretty much healed the seton keep it from completely healing, right? I mean how can it heal completely with a seton there? My seton was not very thick and it was made of satin.

But, I have to tell you all YESTERDAY, just yesterday I realized something!! I didn't feel the seton like I normally do. Like I feel it irritating my skin. I feel it poking me sometimes. I sometimes bleed a little. It hurts sometimes (stinging sensations), but the last few days I felt nothing. Like it was gone! How? I thought they stayed there until a surgeon removed it? No one would touch me! I felt like a prisoner with the seton in me at times.

So I was very scared because my hope was growing and I didn't want to be disappointed. But I finally decided to get to the bottom of all this. I was going to feel for it as I normally do in the shower. So I did. And guess what? It was gone!!!!!! My seton is gone!!!!! It must have fallen out a few days ago I guess. Probably in the toilet during a long wiping session (as usual). I remember about a month ago it seemed to be hanging lower than normal. I even accidently yanked on it a bit by accident and boy did that hurt! And it bleed, and anyway, I was having issues again with it poking me and making me uncomfortable. So I decided to try and push the hanging part back inside a bit. That helped, but it would keep falling out again.

I am guessing one of the knots somehow loosened? Or maybe the seton began to fall apart? I don't know what happened but all I can say is "thank you Jesus!!" My hope was not in vain!

I feel no pain. No irritation. No bleeding. I don't think there is any drainage either, but not 100% sure. I haven't worn a gauze all day today and so far I feel no skin irritation so far. I am still in shock. I am still in awe. I feel that this is what I have prayed for for 2 years. I remember praying "God just take it out yourself. Let it just come out on it's own, please!" and my prayer finally came to pass. I am so happy!!!! I hope I am not celebrating too soon because I realize that CSR's probably believe I could get another abscess but somehow I don't believe that. I believe I am healed. And to top it off I am on a special diet for Crohns. I have been for over 2 years. And it keeps my symptoms away (except when I majorly cheated and got the abscess almost 2 years ago).

Anyway, I want to tell you that though I don't know all your situations exactly, I think that there is hope for you too. Maybe you don't have to have surgery (i never did) Maybe you just need time to heal? Maybe if you change your diet too it could help you heal? I made major changes without drugs and I am better. I feel like I just woke up from my fistula nightmare!!! I hope to God that I never get another abscess and I am going to keep hoping. But for now. I am forever healed of it. I believe!!

Love you all, and hope you all don't have to suffer much longer!

foxy48 said...
Fistula healed!! One of my screen names for another forum is hope4.

"Faith is the confidence that what we Hope4 will actually happen; it gives us assurance about things we cannot see." Heb 11:1

WOW! With your amazing faith and energy I'm surprised it took so long. I don't know you but I couldn't be happier for you if you were my own family. God has blessed you. Thanks for the enthusiastic message.

 

Good luck ren755 - let us know what happens. I have a pouch-vag. fistula and have had a seton in since June this year. Still draining a bit, but no more blood. My C/R surgeon (very well known, very experienced) does not think mine can be fixed with meds or with a plug or patch, etc., so I am dismayed. I'm very interested in hearing which surgeries you've had, and what you have had done on this third round.