New here! I've posted 3 times only to have them disappear! Long story as short as possible, I've been dealing with UTI's for 7 years. I've had 2 mesh slings (both now removed.)After the removal ,the abcesses began. First one was near the vaginal area but not inside. ExTREME pain!always relieved after the rupture. Unfortunately, they always return. They'now moved up toward the rectum and will not ever completely go away.
Finally found a doc that did a biopsy and cultured the abcess and I had a heavy growth of a bacteria called klebeisa oxytoco. I've been through 4 rounds of bactrim + flagy land this is rotated with cipro. Still, it returns. Symptoms (not to mention pain) is being extremey lethargic, can hardly make it through the days at work and count days unil Friday. Fridays are followed by weekends in bed. Feet swelling and sometimes I wake up shaking all all over. Even my insides.So, Dr.thinks it is a fistula. Concerns are the fact that the abcesses have been in other areas. He wants to use a seton.
This is embarrasing. I feel nasty and unworthy. Urine is cloudy and has a foul odor. And I'm SO tired. Dr. sceduled a fistulagram. I cancelled when Iwas told this test is $27,000.00. I have insurance but out of pocket would be 7,000.00I don't know what to do .I have to work. The information I've learned is from my own research.Can someone tell me if you had more than 1 fistula's. Did the surgery get all of them? Were you tired all the time? Was surgery outpatient? This has gone on way too long with many mis-diagnosises. How painful is the seton?

I'm in a small town with no CRS anywhere close. Help!

Kathy


zazzitupNewbie Posts:
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Hi Zazzitup .. sorry to hear of all your troubles... I only had one fistula (thank goodness) and they did a fistulotomy on me and also placed a seton. Not sure i am much help for you but didnt want you to think that no one is reading your posts or offering support. this site is great for info ... Diamond/Diamond2 is a lady on here who had 2 fistula's and she had multible setons in. She too struggled with mis-diaginoses too and had a long journey with her abscess/fistulas. I will find her thread and paste it here so you can read it there is a lot of info in her posts. My post is here in the same section titled Had surgery now on with recovery .... I did not have a CSR but my doc/surgeon happen to be the cheif of surgery and i was not the first case he has had with an abscess turned fistula... i hope things settle for you at least with the pain i know how painful it can be and I will admin one thing about eveything i have been through ... the pain i went through with the fistula was ALOT worse the the pain of the surgery and having the seton in for 6wks. Im here for support as best as i can be if you need to chat or vent.

third-fistula-surgery-positivity-t7108.html

that is part of Diamonds story hope you get some info in there :)

Thanks for your response. I did read Diamond's story. Helps to know you aren't alone!

Ironically, I spoke to the surgeon today. (the one I consulted with) He expressed his concerns about the possibility of more than 1 fistula and he fears this will be a complex case. I know, right? I'm glad he was honest. He is going to talk to a CRS that is about 3 hours from here. He feels the need to consult. I'm good with it!

Hello. I have been dealing with a fistula for a while had it lanced, seton, then yesterday I had the lift procedure done. So far I have had mild-moderate pain,but nothing like I thought it would be I was preparing myself for some major pain. I had hemmorhoid surgery 11 years ago and NOTHING can compare to that pain if you have any questions feel free to ask.

What is a lift?

Its where they close the end and beginning of the fistula with sutures they cut part of the area at the beginning of the fistula and take out some of the muscle its a fairly new procedure not everyone can get it done, but because where mine was at they did it this way because if they cut too much of your muscle inside it can make it to where you cant hold your bowels look if up under Lift procedure for fistula they can explain it better than me. Wishing you all the best fistulas are no fun at all.

Hi Kathy,
That sounds pretty horrendous - what you are suffering and the way it is making you feel......It must be so much more difficult when you live in a more remote area with hours of travel to someone who can help you get better. From what you say, it does appear that you have a complex issue to deal with and yes, multiple tracts are very possible but everything is treatable and in your case, it's clear that it can't be an overnight fix, but please persevere and you will get there.
No wonder you are completely exhausted - it's totally draining and shattering stuff to deal with & with everything that's been going on physically within your body, it's just totally running you down and making you unwell. Abscesses are nasty horrible poisonous infections and they will create horrid effects. Are you taking extra vitamins & minerals, friendly bacteria/ probiotics and doing all you can to boost your general immunity?
No one will know the extent of the healing that needs to be set underway until they are able to give you a proper diagnosis but a good surgeon will know exactly how to deal with your condition and how to take each issue and deal with it until the whole situation has been resolved. It might take time, patience and perseverance on your part, but it can be done and you can and will, feel better again at some point.
From research & posts on here, Setons seem to be initially uncomfortable and require adjustment but after a while people just get on and learn to live with them until they become less bothersome and totally manageable.
Try not to overwhelm yourself with the extent of what might or might not be & just take each day at a time....it's not your fault that this ever happened to you and sometimes it just happens, but you are in no way unworthy and you will feel much better again.
I truly hope this new CRS is able to provide you with the diagnosis and treatment you need to treat your condition & that you can start to get a clear picture of everything very soon. Wishing you all the very best with this and never give up your hope that you can get through this. Take care :)

I just read your response and tears came to my eyes bless you. I drove 3 hours today after work and I'm in the city where my appt is tomorrow at 8 am. My husband stayed home so he could take my granddaughter to school She lives with us. I'm really nervous so reading your reply was so much appreciated. Hopefully I will have a plan before I return home.