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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fistula surgery with seton- Pls help!



01-06-2016, 11:11 AM   #1
Czechwife
 
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Fistula surgery with seton- Pls help!

Hi Everyone, I wrote before but did not get any responses.. just as well I suppose.
I am deathly.. like uncontrollable crying scared of what is going to take place next Wednesday. I went to the CRS yesterday and he did a looksy in there and saw that I had some granulation tissue? And since I had an abscess that drained last week.. he thinks I have a fistula. If so it will be a complex one that will most like require a seton. If he gets in there and its not complex like he is thinking.. he will just do a fistulotomy.

Either way.. I am not ok with having gaping holes in my body oozing blood and pus and possible poo coming from the holes. I guess all the horror stories are online and I know setons are fairly common. The unknown is always so scary.

How long will I hurt? How every time I go to the bathroom I was told to squirt water down there whether pee or poop to rinse off and pat dry. Ok so as a lot of you know... softer poo creates more of a mess than firm. How the heck am I going to be able to pat that dry if I cant scoop it off with a wiping motion?

I don't have short term disability at work, so that is another reason I am freaking. I am so beyond upset. I can't even function until next week. I cried myself to sleep at the thought of what is going to happen. I have been on so much antibiotic lately too and I am broke out in a rash (maybe from stress) ... Anyways I am going to my PCP office today and I pray he can give me something to ease this anxiety.

I am beyond scared for a 28 yr old female. Also, what about when I go on my cycle? Keeping that area clean is a full time job when the cycle comes! Oh help me Jesus.
01-06-2016, 03:12 PM   #2
ronroush7
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I would recommend getting a sitz bath. You can usually buy them at a drug store.
01-06-2016, 03:38 PM   #3
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Hi Czechwife,

I'm sorry you are going through this. I felt exactly the same before I had my seton placed in Feb last year. To be honest, I didn't feel that great after I'd had it done but as the weeks went on and the area healed a bit it became much easier to deal with.

Obviously you don't know yet what you'll come out with and that must be the scariest thing. I knew in advance I was definitely getting a seton, but wasn't prepared to have a big hole which needed daily packing by a nurse for about 2 weeks. The wound looked pretty scary at first, but please remember that it will heal and get better over time.

It will depend what you have done and how much pain you are in afterwards, as everyone is different, but I would be prepared to have some time off work. How long has your surgeon told you you might need off? I am a full-time student and had about 3 weeks off classes after mine. I've seen other people on here saying they had less time off than that though.

As for keeping the area clean, my surgeon told me to spray it with the shower head twice a day. At first when you are at home you will probably want to wash it in the shower after each BM. Now I find it easy enough to clean up with wet wipes when I'm out and about. With a wee I just pat with tissue, but it's a right pain as it sometimes goes on the dressings (I need these as it still drains a bit). Some people say they carry a little bottle around with them to spray it with. You can put all your bits and pieces to deal with it in a little wash bag.

After you have the op, you'll probably get some codeine or similar which should help to constipate you so you have fewer BM. This can be a good thing if you normally have lots of loose BM. Will you be getting any other treatments for your crohn's after they place the seton, like Humira or Remicade?

Hope this helps a bit. I can totally empathise as I was in the same position as you this time last year. It will get easier xx
01-07-2016, 08:14 AM   #4
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Hi Czechwife,

I'm sorry you are going through this. I felt exactly the same before I had my seton placed in Feb last year. To be honest, I didn't feel that great after I'd had it done but as the weeks went on and the area healed a bit it became much easier to deal with.

Obviously you don't know yet what you'll come out with and that must be the scariest thing. I knew in advance I was definitely getting a seton, but wasn't prepared to have a big hole which needed daily packing by a nurse for about 2 weeks. The wound looked pretty scary at first, but please remember that it will heal and get better over time.

It will depend what you have done and how much pain you are in afterwards, as everyone is different, but I would be prepared to have some time off work. How long has your surgeon told you you might need off? I am a full-time student and had about 3 weeks off classes after mine. I've seen other people on here saying they had less time off than that though.

As for keeping the area clean, my surgeon told me to spray it with the shower head twice a day. At first when you are at home you will probably want to wash it in the shower after each BM. Now I find it easy enough to clean up with wet wipes when I'm out and about. With a wee I just pat with tissue, but it's a right pain as it sometimes goes on the dressings (I need these as it still drains a bit). Some people say they carry a little bottle around with them to spray it with. You can put all your bits and pieces to deal with it in a little wash bag.

After you have the op, you'll probably get some codeine or similar which should help to constipate you so you have fewer BM. This can be a good thing if you normally have lots of loose BM. Will you be getting any other treatments for your crohn's after they place the seton, like Humira or Remicade?

Hope this helps a bit. I can totally empathise as I was in the same position as you this time last year. It will get easier xx
Thank you so much for your response. I will be off work at least two weeks but I am hoping my boss will bring me a laptop and let me work from home the last week so I can save my paid time off for the second surgery if I need it (if seton is placed). The CRS I see leaves setons in for three months... goes in on a second surgery removes it and then does a fistulotomy with a possible LIFT procedure at that time. I need to follow up with my GI, whom I haven't seen in 5 years almost since I have been symptom free. So I am not sure if I will need to follow up with the GI as well. I need to ask the CRS that I guess. I did ask the CRS to draw me how big my hole will be because I am scared of how big it will be ... its about the size of an O so I hope that means he will use the string like seton rather than the rubber band. Did you bleed a lot after getting yours? That is another fear of mine is a lot of blood, I have a pretty weak stomach . I can deal with ooze since my abscess had yellowish liquid ooze a lot .

Again, thank you from the bottom of my heart.
01-07-2016, 08:36 AM   #5
ronroush7
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Best to you.

01-07-2016, 06:39 PM   #6
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I think I was doing a bit of study from home after my op before I went back. It will be good if you can manage to work from home, but don't push yourself too much as you need to rest and recover

I would suggest you follow up with your GI. Some meds like remicade and Humira, can help to heal fistulas.

The size of an O does not sound too bad. My wound was 2 or 3 cm diameter and had had to be packed. Actually I don't know how big it was as I was scared to look at it until it had healed up a bit! It did bleed a bit, but remember blood spreads out and always looks more than it actually is.

You can ask your surgeon which type of seton he will use. I had the rubber band one (silastic) initially and my current surgeon suggested I change to the green string one (ethibond) to be more comfortable and as it wicks better so helps it to drain. I think it is slightly more comfortable. There's not a lot in it. It's certainly thinner.

I hear ya with the ooze! It's a right pain. It's a good idea to get a stock of surgical swabs (I use the non-woven ones which are softer than gauze) in to deal with things after your op. They might send you away with some supplies but I would want to be prepared just in case. I think there's a thread on here where people mention the different types of dressings they use to catch the drainage.

Take care and let us know how the op goes. Xx
01-07-2016, 06:41 PM   #7
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Yes, let us know.

01-12-2016, 04:30 PM   #8
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Czechwife,
Best of luck for your surgery tomorrow. Thinking of you
01-12-2016, 04:35 PM   #9
Czechwife
 
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Czechwife,
Best of luck for your surgery tomorrow. Thinking of you
Thank you so much Kat. I'm nervous and trying to get everything ready. I'm not in hysterics. I realize I need this surgery and they will do what is needed. My abscess popped again this morning at work ! Talk about embarrassing. My coworkers covered me in a blanket and helped me to my car. Must have been those baths I've been doing to try to relax.

I'm worrying cause I'm scared I won't be able to walk to the bathroom or be in so much pain to do the dressing changes or showers. I'm trying to stay strong in my faith and pray I'm a lucky one who has minimal pain. I know to expect drainage. Lots of thoughts going through my head today. Thank you for thinking of me.
01-12-2016, 04:44 PM   #10
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Do you have someone to help you at home afterwards? I was never in too much pain to walk to the bathroom, but it's helpful to have someone to cook your meals etc. I had to get mine packed so the nurses were doing the dressings, but there were issues with the packing fallling out etc. which was quite scary and my mum and sister changed the dressing for me a few times.

they will give you painkillers at the hospital, and if they don't ask for them! They've always given me paracetamol and codeine for mine.

I agree that it sounds like the right course of action for you. You can't go on having abscesses pop at work. I had that happen too, and yuk!

xx
01-15-2016, 06:36 PM   #11
Czechwife
 
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Do you have someone to help you at home afterwards? I was never in too much pain to walk to the bathroom, but it's helpful to have someone to cook your meals etc. I had to get mine packed so the nurses were doing the dressings, but there were issues with the packing fallling out etc. which was quite scary and my mum and sister changed the dressing for me a few times.



they will give you painkillers at the hospital, and if they don't ask for them! They've always given me paracetamol and codeine for mine.

I agree that it sounds like the right course of action for you. You can't go on having abscesses pop at work. I had that happen too, and yuk!

xx
Well I'm on the other side now. The surgeon said they caught it in the nick of time as it was almost to the muscle. Thank God it didn't. So I've been spending my days in the bath tub. They only packed it the first time and it came out as the dr wanted with the first bath. I do have a quarter size open wound that is freaky as heck. But the seton goes through my rectum through the abscess cavity. I don't see how this open wound will heal ! How does skin regrow over a large open area ?!?
01-15-2016, 07:51 PM   #12
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I posted above - I had a cutaneous abscess back in July. Well done you. I know it's frightening. I'm a forty something baby and I bawled.

Eat protein - that promotes healing. So many people told me this constantly!

Please try and keep the wound dry unless they tell you otherwise. Really hard when you have an IBD to contend with and time of the month I know. I used to wear a plastic bag over my middle and was careful with the water from the shower.


I wish someone had told me about donut cushions. It makes sitting so much easier ! I have one at home and one at the office.

I had my dressings changed for over 50 days. I did manage to do this myself when the healing was almost done and I no longer required packing . It wasn't elegant - squatting over a mirror and being careful I managed to put a fresh dressing on.

Just take it a day at a time and be kind to yourself. Rest as much as you can. It may seem minor but it's surgery - your body needs to heal !! Don't feel guilty about doing nothing. You know what you have been through and what you need to get better.

Good luck my friend !!
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01-16-2016, 03:48 PM   #13
Czechwife
 
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I posted above - I had a cutaneous abscess back in July. Well done you. I know it's frightening. I'm a forty something baby and I bawled.

Eat protein - that promotes healing. So many people told me this constantly!

Please try and keep the wound dry unless they tell you otherwise. Really hard when you have an IBD to contend with and time of the month I know. I used to wear a plastic bag over my middle and was careful with the water from the shower.


I wish someone had told me about donut cushions. It makes sitting so much easier ! I have one at home and one at the office.

I had my dressings changed for over 50 days. I did manage to do this myself when the healing was almost done and I no longer required packing . It wasn't elegant - squatting over a mirror and being careful I managed to put a fresh dressing on.

Just take it a day at a time and be kind to yourself. Rest as much as you can. It may seem minor but it's surgery - your body needs to heal !! Don't feel guilty about doing nothing. You know what you have been through and what you need to get better.

Good luck my friend !!
Thank you. They told me to do as many sit baths as possible. I finally had a real bowel movement today and I was sore afterwards and it seems like I am still leaking fecal matter even after. I can only pat clean then take a sitz bath afterwards. I went back after I did all that and had some feces on my gauze. So I soaked again

I wish they would have given me a peri bottle to squirt back there. You are right. One day at a time. Sometimes one minute at a time. I'm so thankful for the Internet to connect to people going through the same thing.
01-17-2016, 08:10 PM   #14
Kat123
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Hi Czechwife,
Glad you are through the surgery ok. Don't worry, the wound will heal. I felt the same - how can it possibly heal up? But it does.

My surgeons told me to keep the wound clean by washing with the shower head twice a day. I guess the advice varies. The location of mine, it would be pretty much impossible to keep it dry, even if they'd told me to - so thank goodness they didn't! You can buy a little squirty bottle easily on the internet if that would help you.
01-17-2016, 08:17 PM   #15
Czechwife
 
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Hi Czechwife,
Glad you are through the surgery ok. Don't worry, the wound will heal. I felt the same - how can it possibly heal up? But it does.

My surgeons told me to keep the wound clean by washing with the shower head twice a day. I guess the advice varies. The location of mine, it would be pretty much impossible to keep it dry, even if they'd told me to - so thank goodness they didn't! You can buy a little squirty bottle easily on the internet if that would help you.

Thanks sweetie. Yes I bought some of those squirt bottles on Amazon and hopefully will have those soon. These baths are time consuming. Lol. I bought a sitz bath basin but much prefer the bath tub. You are so nice to encourage me through this. It's embarrassing to be sitting in this bath tub while I have a house full of guests. But I had to soak since I had a BM. Lol. Hope you are doing well and thanks for the encouragement. ((Hugs)))
01-17-2016, 08:31 PM   #16
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You have a houseful of guests?! Yeah, now is the time you don't have to worry about being the perfect hostess
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