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Nov 11, 2015
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Hi everyone,

This site has been a true savior for me recently and I'm grateful for all of the support and stories shared...
For those of you that don't know my story, the cliff notes version is: recurring abscess (6x) July through end of September. MRI showed transphicteric fistula, had seton placement 2 weeks ago. The amount of pain I endured post seton surgery was almost debilitating... I had about 3 "good days" or more hours during those days but mostly it was pretty intense, pain, and truthfully I can withstand a lot. I tried moving it a number of diff ways, nothing seemed to help. Yesterday I saw the surgeon and when he went to touch the area to view I screamed so loudly and emotionally he said this isn't normal, this should not be nearly this painful, most people do not even know it's in, and he took it out right then. He had me sit and asked how that felt without it and I said it felt so much better... He really had no idea as to why the pain was that severe and I must admit it leaves me wondering what the F happened??? Has anyone experienced this?
Secondly, he said we should schedule the Flap procedure next. He admitted his patients have told him it is pretty intense pain the first few days and that he worries that if the seton placement was so awful for me that he is concerned about the level of pain I could have with the FLAP.....
I have three kids under 4.... Which makes this so much harder. I have read many post about how important it is to rest after and how three laid in bed for weeks... No matter how much help I will be able to get, that will never be an option and this all worries me as well.
The surgeon left it up to me to decide when to schedule surgery as I had said the last few months and mainly the last 2 weeks have been hard on my girls, they're missing "me" and I said I don't want to ruin their holidays and can we push the date off? He said I can have it as early as I want or wait until January... We are due to travel with my whole family for thanksgiving for the week and the kids are pumped to see their cousins... Providing I start feeling better than I do currently we could still go and do that, but truthfully I'm in a huge funk, I don't feel like myself lately and don't know how much fun I would even be to be around everyone.
I have no idea what is best and I know the decision is in my hands but I am reaching out to you and asking for any guidance possible!!!!! Thank you so very much.
~ Kelly
 
Hello Kelly
You are having a terrible time of it and I can't believe this is the best thing for you to cause even greater pain....have you considered another opinion.
I have no experience at all with setons and hopefully you will soon be joined by others on this forum who have the experience and advice you need.
Feel better soon
Hugs and best wishes
Trysha
 
I've been in the same boat and am there now. I've dealt with perianal fistulas for 30 years, since I was 15. The biologics have helped over the years but now I'm at a point where nothing is helping.
I had a couple of drains and setons put in in August and the pain was much worse than normal.
I'm barely holding on now. I'm sleeping a lot and not functioning. I have a 6 year old little girl and my wife is stressed beyond
The I've thing I did that has helped was go to a pain management dr. It allows me to get through the day.
I can relate to what you are going through. The surgeon wants to do an ostomy and give my butt time to heal. This would be my 3rd and I can't say it was fun. I have a 6 year old little girl and I don't want to do this but I'm afraid I'm at the end of what I can tolerate. I'm barely functioning and it's not fair to my wife or daughter.
Have you tried the biologics? (Remicadee, humira? ) for many people they will dry fistulas up and Humira gave me 5 good years.
I would wait a few weeks and see where you are. It's possible that the seton hit a nerve or just was put in a lousy place. That happened to me with the drains last time.
 
Thank you ALL for your replies and my apologies in delayed reply as I just found all of these emails in my junk mail! I had wondered why no one responded ha!!!
The pain has lessened without the seton however I still have dealt w considerable pain and some additional symptoms that I am praying are only a side effect and not sign something else has developed... I have not been able to continue running which has been tough for me mentally but I know I will get there!
I am at the hospital now for Advanced Flap procedure. Please send positive thoughts for a successful surgery and easy recovery!!!

Echodog: I have heard about Remicade and Humira but only through this forum, my Dr has not mentioned to me and I am assuming it's because i don't have crohns? Pain management center is very interesting, good for you for being your own advocate and finding somewhere to help you find SOME relief... I will look into that as well.
I am happy to be back in touch with you as it really has been a tough 5 months... I look forward to filling you all in later this week on some GOOD news 🙏🏻🙏🏻🙏🏻

All the best,

Kelly
 
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