Thanks for the responses. My gastro doctor doesn't want to be involved - he just said to let the colon-rectal surgeon handle it. I did see one other colon surgeon to see if I could find someone that would talk to me, but she got mad and mean when I mentioned that I was very anxious about all this. She said "let's just stick to the physical facts and not get involved with any emotional issues" in a very mean and abrupt way. Did not go well, obviously. I like my colon doctor and suspect she won't talk to me because the last time she said we had to do surgery again, I shed a few tears, and I think it made her uncomfortable. I don't think she really knows how all this will go - good or bad - and she doesn't want to upset me talking about the "unpleasant" possibilities - just a guess, but she is nice and is a partner with one of the most respected colon surgeons in the area.
Based on what I've read on this forum, these things can take much longer to heal than I had assumed. I had thought I would have the surgery and be just fine in 4-6 weeks, but this area must be different than surgery in other parts of the body - lucky us. I need to figure out a way to be a "big girl" about this, but I don't handle surgery well - the IVs are always a disaster and I don't recover well from anesthesia.
One other question - does anyone know if it's ok to exercise a little when you still have setons in? I'm way overweight and can't do anything really drastic, but was just wondering if it would be ok (like walking slowly on an elliptical) or if exercise would upset everything down there. Thanks for your input and suggestions. It means everything to know you're not alone - it's certainly not a condition you can go around sharing with everyone.
I just wanted to say welcome and that things will get better, they just take time. You are lucky to have had a seton inserted, I was left with a negligent GI who had me returning to the ER again and again to have it drain a bit and then re-abscess, I was in excruciating pain for months and could barely walk before I took it upon myself and tracked down a great colo-rectal GI. I’m 23 and was trying to hold down a fulltime job so it was difficult, to say the least.
I have just come off antibiotics (flagyl and amoxicillin) which I have been on for about 7 months. My abscess first appeared in November of last yr and never really left me alone, kept coming back. After a long journey, it is doing well (I ended up having a mushroom drain inserted into the abscess cavity as it continued to gather sepsis even after the initial seton was inserted). Those setons are wonderful things. I pleaded with my old GI to let me see a colo-rectal surgeon (my GI didn’t even know about setons and their existence, he told me ‘we don’t do that in australia’!) – I am glad you have one in there because they are blessings in disguise. Mine is bright red! My mushroom drain is a large tube and it has been in for a couple of months, it helps things heal from the inside out, and hopefully, if all goes well, my drain and mushroom will be coming out in the next couple of months.
My advice would be to monitor the situation (my initial seton worked for a week and then more abscess began to form, so I got in there quick-smart and got another drain inserted) – and try to track down a colo-rectal surgeon who specialises in crohn’s/inflammatory bowel diseases…. They really understand. As for the meds, I am surprised they didn’t put you on any anti’s to lower infection and help control it – I have been on antis for months. Maybe It would be worth asking your dr next time why they did not think this was necessary?
How is your pain level at the moment?
My abscess was large too, and I also had to have a second drain put in because there was left-over sepsis. My seton has been in for over 4 months now and I don’t even feel it there. I have heard they can be left in as a life-long thing too, just changed every few years, but it sounds as if yours are being put in as temporary measures.
I initially had 2 setons, but one was a ‘cutting seton’ (looked just like other one), and it laid open a bit of skin in between the abscess and my top skin…. I didn’t even realise it was doing this until it came out during my 2nd surgery.
I do think the lack of antibiotics is strange. When I was recoving from my 1st surgery, one of my drs told me I could come off the anti’s, so I did, and man, in that week I went downhill and fast – the infection grew at such a faster rate, I could see it blackening beneath the skin, and things got worse so much quicker than they would have if I’d been on the antis.
A GP could prescribe you flagyl and amoxicillin if you are worried about asking your GI again, but I am not a dr so I would definitely ask them first why they have not put you on antis to help control the inflammation. I know with abscesses they are pockets of infection, so the antis can’t get to them like they can get to normal infections, but I am sure they can still help control the sepsis. They did in my case and I’ve been on them for months.
Mr drs were also hesitant to cause damage to that delicate area, the muscles are very tricky I do believe. In my case they were worried about unnecessary damage causing incontinence. At least your dr sounds like she’s being cautious and not just going in gung-ho and cutting away at things. I hope you find some answers and relief soon; these things are just awful to deal with.
Since my doctor gives me no info, I need to ask a couple of more questions. When you have had an abcess and then on a 2nd surgery, the doctor puts in seton drains, is it normal when you press on that area with damp toilet paper to not really wipe hard but just to sort of clean, that there's a small amount of blood every single day. Her nurse said not to worry about it unless it was a lot or not bright red, but I was wondering about actual other patient experiences. Every day it really upsets me and I start freaking out and my anxiety just skyrockets, because it seems like there shouldn't be any blood six weeks after the last surgery. But maybe since the setons are still there and supposedly things are staying "open" it is ok. But does that mean that nothing is healing? I feel like I'm losing my mind with worry.......aaaaaaggggghhhh. Also, does anyone else find that the drainage, even though small, irritates the skin down there even with the gauze which also feels kind of irritating. Everything down there kind of burns all the time.
Thanks for your help.