fistula

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  • garden gal
    garden gal Member Posts: 212 Member
    #22
    Kaleena said:

    Kathy:I am sorry you have
    Kathy:

    I am sorry you have to go through this. Although I have not had major surgery while on chemo, I did have an open wound while on chemo. I had my hysterectomy and then they found cancer so they a month later did staging surgery going over the same incision from before wherein I developed an infection. I ended up having a 3 in deep open wound which I had packed everyday for at least five weeks until it healed. During that time I also had a port put in place.

    Anyway, all surgeries should be taken seriously. As with police officers, there is no such thing as a "routine traffic stop". Your doctors didn't say that wouldn't do it they just have to tell you the possible consequences (as with any surgery). Did your doctor say that the operation could kill you or that if you don't have the surgery done it could kill you? I know when at the doctors office getting news it can get quite confusing once we focus on one part of the news.

    Sending you comforting hugs.

    Kathy

    thanks everyone
    Doctor said the surgery could kill me, so hearing those words where very hard.
    they will have to remove my bowels,untangle them. the small bowel will be cut and put back together, hernia will be repared and then a mesh liner will be used to hold everthing in place.will keep you updated thanks everyone kathy
  • Mwee
    Mwee Member Posts: 1,338
    #23
    garden gal said:

    thanks everyone
    Doctor said the surgery could kill me, so hearing those words where very hard.
    they will have to remove my bowels,untangle them. the small bowel will be cut and put back together, hernia will be repared and then a mesh liner will be used to hold everthing in place.will keep you updated thanks everyone kathy

    so sorry you're going through all this
    we're at our end waiting for further updates....... (((((HUGS)))) Maria
  • garden gal
    garden gal Member Posts: 212 Member
    #24
    Mwee said:

    so sorry you're going through all this
    we're at our end waiting for further updates....... (((((HUGS)))) Maria

    forgot
    to add they will repair the fistula that came out through the hyst. wound, which never totaly healed over.
  • carolenk
    carolenk Member Posts: 907 Member
    #25
    garden gal said:

    forgot
    to add they will repair the fistula that came out through the hyst. wound, which never totaly healed over.

    So you've been dealing with
    So you've been dealing with a wound that hasn't healed since your surgery--it's about time you got this situation straightened out!

    Put those horrible words out of your mind "the surgery could kill you." What a thing to say! You could also do just fine after surgery.
  • garden gal
    garden gal Member Posts: 212 Member
    #26
    carolenk said:

    So you've been dealing with
    So you've been dealing with a wound that hasn't healed since your surgery--it's about time you got this situation straightened out!

    Put those horrible words out of your mind "the surgery could kill you." What a thing to say! You could also do just fine after surgery.

    fistula
    carolenk, the wound I've been dealing with is from my hyst. wound care from N.H to Boston have done all they can for it. The chemo prevents that last layer of skin to grow. As for the surgery because of the amount of repair work needed to fix this fistula 3 surgeons have now said it is a very risky surg Feelery for me right now. If I go into remission again they will consider it.For now they put a catha.down the opening of the fistula and attached a feeding tube. Hard for me to except all this because I feel so good. Now they are trying to come up with some kinda dressing to go over the fistula for all the drainage from it, so far nothing has worked all have leaked. Feel like crying all the time. Kathy
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #27
    garden gal said:

    fistula
    carolenk, the wound I've been dealing with is from my hyst. wound care from N.H to Boston have done all they can for it. The chemo prevents that last layer of skin to grow. As for the surgery because of the amount of repair work needed to fix this fistula 3 surgeons have now said it is a very risky surg Feelery for me right now. If I go into remission again they will consider it.For now they put a catha.down the opening of the fistula and attached a feeding tube. Hard for me to except all this because I feel so good. Now they are trying to come up with some kinda dressing to go over the fistula for all the drainage from it, so far nothing has worked all have leaked. Feel like crying all the time. Kathy

    Hugs...it is so hard when
    Hugs...it is so hard when you feel ok, and stuff like this happens. I have hope that this will work out. Some of these gals have had some complicated surgeries and are still with us today.

    Honestly I would be crying too...but then just hold on and fight....I pray that they will find something to stop the drainage. One step at a time...
  • carolenk
    carolenk Member Posts: 907 Member
    #28
    Radioactive34 said:

    Hugs...it is so hard when
    Hugs...it is so hard when you feel ok, and stuff like this happens. I have hope that this will work out. Some of these gals have had some complicated surgeries and are still with us today.

    Honestly I would be crying too...but then just hold on and fight....I pray that they will find something to stop the drainage. One step at a time...

    Kathy
    Have you tried using
    Kathy

    Have you tried using ostomy-type bags? It sounds like you have a sort of ileostomy situation.
  • garden gal
    garden gal Member Posts: 212 Member
    #29
    carolenk said:

    Kathy
    Have you tried using
    Kathy

    Have you tried using ostomy-type bags? It sounds like you have a sort of ileostomy situation.

    bags
    you name the size bag and they have tried it. they have a fistula vac on me right now and they are having a hard time getting it to stay sealed. Dr does not want to operate right now.
    but if all fails no choice but surgery.
    would you believe I just had a nurse tell me if this vac fails it would mean rehab.for good.what the hell is that. sorry for my lanquage but I'd find a dr who would operate and take my chances. thanks for all the support. Kathy
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #30
    garden gal said:

    bags
    you name the size bag and they have tried it. they have a fistula vac on me right now and they are having a hard time getting it to stay sealed. Dr does not want to operate right now.
    but if all fails no choice but surgery.
    would you believe I just had a nurse tell me if this vac fails it would mean rehab.for good.what the hell is that. sorry for my lanquage but I'd find a dr who would operate and take my chances. thanks for all the support. Kathy

    Don't apologize for using
    Don't apologize for using strong language, Kathy! I'd be cussing up a storm if I were in your shoes. Having any kind of ostomy is a burden to live with & your leaky situation just sounds like a nightmare to me.

    Maybe the TPN will help you gain strength to prevail over this adversity. I am surprised TPN wasn't suggested sooner.

    I had a very tiny incisional fistula after surgery. It really freaked me out as it was draining ascites even though it was about the diameter of a pencil lead. A tiny hole that stayed open whereas the rest of the incision was healed up.

    I dropped some strong iodine solution into the fistula & it was really irritating at first. Thankfully, the wound healed up after that. I had not started on chemo yet & was really worried that it would never heal.

    I think you would be better off having a surgeon give you a temporary ileostomy rather than what you are now dealing with. My heart goes out to you. This really sucks.
  • garden gal
    garden gal Member Posts: 212 Member
    #31
    LaundryQueen said:

    Don't apologize for using
    Don't apologize for using strong language, Kathy! I'd be cussing up a storm if I were in your shoes. Having any kind of ostomy is a burden to live with & your leaky situation just sounds like a nightmare to me.

    Maybe the TPN will help you gain strength to prevail over this adversity. I am surprised TPN wasn't suggested sooner.

    I had a very tiny incisional fistula after surgery. It really freaked me out as it was draining ascites even though it was about the diameter of a pencil lead. A tiny hole that stayed open whereas the rest of the incision was healed up.

    I dropped some strong iodine solution into the fistula & it was really irritating at first. Thankfully, the wound healed up after that. I had not started on chemo yet & was really worried that it would never heal.

    I think you would be better off having a surgeon give you a temporary ileostomy rather than what you are now dealing with. My heart goes out to you. This really sucks.

    good morning laundry queen
    everytime I see your post it reminds when my kids were young.
    asked about ileostomy and they are trying to do the least invasive procedure right now.They have let me start eating again along with a liquid used to feed me through the cathada(still don't know how to spell that}. I might add that a ct scan showed that I have responded to the chemo which was topo. although my ca125 is 465 right now maybe thats due to my situation right now with the fistula. Waiting to talk to my onocologist.
    they started giving me an injection and instead of this runny acid waste coming out it has slowed down and has gotten a lot thicker.
    So maybe just dressings are all I will have to deal with, wouldn't that be nice. crossing my fingers, praying for some good news today. Thanks for your reply and yes this realy does suck.keep you updated. Kathy
  • carolenk
    carolenk Member Posts: 907 Member
    #32
    garden gal said:

    good morning laundry queen
    everytime I see your post it reminds when my kids were young.
    asked about ileostomy and they are trying to do the least invasive procedure right now.They have let me start eating again along with a liquid used to feed me through the cathada(still don't know how to spell that}. I might add that a ct scan showed that I have responded to the chemo which was topo. although my ca125 is 465 right now maybe thats due to my situation right now with the fistula. Waiting to talk to my onocologist.
    they started giving me an injection and instead of this runny acid waste coming out it has slowed down and has gotten a lot thicker.
    So maybe just dressings are all I will have to deal with, wouldn't that be nice. crossing my fingers, praying for some good news today. Thanks for your reply and yes this realy does suck.keep you updated. Kathy

    Would your doctor let you
    Would your doctor let you use something like Kaopectate (which is a clay solution)? Maybe that would keep the drainage thicker. I have another idea: how about a colloidal dressing that would absorb that drainage since it isn't so runny now? Maybe ask the nurse about that.

    You are a real trouper! Ovarian cancer & chemo is bad enough. I really look forward to reading that you are no longer dealing with this mess.
  • garden gal
    garden gal Member Posts: 212 Member
    #33
    carolenk said:

    Would your doctor let you
    Would your doctor let you use something like Kaopectate (which is a clay solution)? Maybe that would keep the drainage thicker. I have another idea: how about a colloidal dressing that would absorb that drainage since it isn't so runny now? Maybe ask the nurse about that.

    You are a real trouper! Ovarian cancer & chemo is bad enough. I really look forward to reading that you are no longer dealing with this mess.

    Thanks Carolenk
    They are giving me these shots that are slowing down the drainage also they are putting on a fistula vac. so I'm crossing my fingers. I will be asking about this collloidal dressing. Thanks for the info will let you know what they say, and the name of the shots they are giving me. Kathy
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #34
    garden gal said:

    Thanks Carolenk
    They are giving me these shots that are slowing down the drainage also they are putting on a fistula vac. so I'm crossing my fingers. I will be asking about this collloidal dressing. Thanks for the info will let you know what they say, and the name of the shots they are giving me. Kathy

    Thinking of you..hugs and
    Thinking of you..hugs and prayers
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #35
    Kathy how are you doing? I
    Kathy how are you doing? I have been thinking about you. Praying and hoping all is going as best as possible.

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