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4th surgery for Anal fistula, may need 5th. help
I am so over these surgeries. I just had my 4th surgery for a fistula and this one did not work. The Dr. did an extensive flap repair and stiched the flap over the tract. Went yesterday for follow up. Infection settled in the flap area and he is talking about a seton placement. This surgery was one week ago. I am getting very depressed as he said the tract is way up in the rectum. I have had the 4 surgeries in 4 months. Can ANYONE help me with this or direct me to a web site for me to look at.
I don't want to spend the rest of my life dealing with this. Thank you
I don't want to spend the rest of my life dealing with this. Thank you
Hi Everyone,
Hope, thanks for your kind words. Yes, living with Crohns is an ongoing struggle. I am taking medication (Pentasa) which my Dr says I need to stay on indefinitely. If these don't work then steriods or immuno-suppressant next. Anyway, I am having a Seton placed tomorrow so I will have more news about how that feels soon. I'd rather avoid having any intervention but we all know we have to live with this. One person at work told me that she has a similar problem and it was wonderful to talk to someone who understands! At present I am fortunate enough to be able to work and get on with living but I recall and empathise with everyone stuck at home recovering. I remember a time when misery ruled my days but recently I have changed my attitude and I am holding onto every good moment I have! There are moments when I am distracted, when I forget about this wretched fistula. Try laughing out loud at least once a day even when you don't feel like it. Laughing changes brain chemistry and promotes healing - so give it a go :) Hugs to all. iJo
Hope, thanks for your kind words. Yes, living with Crohns is an ongoing struggle. I am taking medication (Pentasa) which my Dr says I need to stay on indefinitely. If these don't work then steriods or immuno-suppressant next. Anyway, I am having a Seton placed tomorrow so I will have more news about how that feels soon. I'd rather avoid having any intervention but we all know we have to live with this. One person at work told me that she has a similar problem and it was wonderful to talk to someone who understands! At present I am fortunate enough to be able to work and get on with living but I recall and empathise with everyone stuck at home recovering. I remember a time when misery ruled my days but recently I have changed my attitude and I am holding onto every good moment I have! There are moments when I am distracted, when I forget about this wretched fistula. Try laughing out loud at least once a day even when you don't feel like it. Laughing changes brain chemistry and promotes healing - so give it a go :) Hugs to all. iJo
To answer your question, a seton can be a rubber band that has a small clamp on it. You realy do not know that it is there except when you bath or wipe. A silk seton is just what it says. Silk sutures put in. I don't know it is there except when I have to pull on it. and I do this every other day hoping it will cut through. Very important! Take atleast 2 sitz baths a day. Morning and night. Stay in the water for about 15 minutes. (Will seem like eternity). I work and I find time to get up earlier to do this and take my last bath before bed.
Good Luck!
Good Luck!
Hi Hope!
I am sorry that I have not responded to your questions.
Hope to be of some help.
I didn't have the fistulectomy/otomy because I have a complex fistula. It is horseshoe shaped and any fistulotomy can cause incontinence. (Loosing your bowels). Some people can get this done if it is a simple case. What you are describing, about your recurrent abcesses means you need to do something. I was so sick with mine. My white count was up to 18, which is high and I was so sick. It can also cause you to feel ill, tired and not want to do anything. This is because the infection is in your body. I was almost toxic by the time I decided to get mine drained. I have had the advancement flaps, drain tubes put in, 2 setons, one with a rubber band and now a silk one. This allows for drainage. If you can tolerate alot of pain, my suggestion to you is to have the cutting seton. This will be tightened over a period of time and will cut through so you can heal from the inside out. I could not tolerate the pain. I wanted to die! I couldn't work. All I did was cry. I did try the "Fibrin Glue" They mix this in the operating room with your own blood and it forms a patch like clot which aides in healing. I thought mine was healed after that, but got a bad stomach virus and it came back.
If you have had one opinion, seek another and someone that is a colorectal surgeon. Not a general surgeon. Colorectal surgeons have more experience with these. Believe me, I could write a book on this. I am not out of the woods yet. My doctor is now talking a cutting seton, which is basically the same as the rubber band because we have used all our options except the fistulectomy. And because alot of my muscle was cut, I stand a chance to be incontinent. But, he said he could fix that. Reconstructive surgery in the future.
If your doctor thinks a small amount of muscle is involved, then go for the gold. Get it over with. But remember, they can come back. 50% of rectal abcesses will be fistulas. I was one of the unlucky ones. And fistulas can come from over abuse of laxatives, hemorroids, constipation and anal sex.
So, I wear cotton balls or gauze everyday because of the leakage and a pad just in case. And now, if this heals, I think I will have lost something cause I am so use to it. I went into deep depression because it can interfer with your relations with your spouse. I didn't feel much of a woman after all of this, but I had a understanding husband and doctor that pulled me through this. Not saying that I won't get that way again.
Please do something soon! Get a second opinion.
Please respond and let me know what has happened and what you have decided to do. Do your homework. Look at sites on the internet, library or what ever to understand this. It helped me and it will help you.
Good Luck my firend!
I am sorry that I have not responded to your questions.
Hope to be of some help.
I didn't have the fistulectomy/otomy because I have a complex fistula. It is horseshoe shaped and any fistulotomy can cause incontinence. (Loosing your bowels). Some people can get this done if it is a simple case. What you are describing, about your recurrent abcesses means you need to do something. I was so sick with mine. My white count was up to 18, which is high and I was so sick. It can also cause you to feel ill, tired and not want to do anything. This is because the infection is in your body. I was almost toxic by the time I decided to get mine drained. I have had the advancement flaps, drain tubes put in, 2 setons, one with a rubber band and now a silk one. This allows for drainage. If you can tolerate alot of pain, my suggestion to you is to have the cutting seton. This will be tightened over a period of time and will cut through so you can heal from the inside out. I could not tolerate the pain. I wanted to die! I couldn't work. All I did was cry. I did try the "Fibrin Glue" They mix this in the operating room with your own blood and it forms a patch like clot which aides in healing. I thought mine was healed after that, but got a bad stomach virus and it came back.
If you have had one opinion, seek another and someone that is a colorectal surgeon. Not a general surgeon. Colorectal surgeons have more experience with these. Believe me, I could write a book on this. I am not out of the woods yet. My doctor is now talking a cutting seton, which is basically the same as the rubber band because we have used all our options except the fistulectomy. And because alot of my muscle was cut, I stand a chance to be incontinent. But, he said he could fix that. Reconstructive surgery in the future.
If your doctor thinks a small amount of muscle is involved, then go for the gold. Get it over with. But remember, they can come back. 50% of rectal abcesses will be fistulas. I was one of the unlucky ones. And fistulas can come from over abuse of laxatives, hemorroids, constipation and anal sex.
So, I wear cotton balls or gauze everyday because of the leakage and a pad just in case. And now, if this heals, I think I will have lost something cause I am so use to it. I went into deep depression because it can interfer with your relations with your spouse. I didn't feel much of a woman after all of this, but I had a understanding husband and doctor that pulled me through this. Not saying that I won't get that way again.
Please do something soon! Get a second opinion.
Please respond and let me know what has happened and what you have decided to do. Do your homework. Look at sites on the internet, library or what ever to understand this. It helped me and it will help you.
Good Luck my firend!
Also wanted to comment on everyone's individual situation:
Therin, I have also been experiencing terrible fatigue. I get extremely tired during the day to the point of almost falling asleep. My energy is way down. I don't know specifically what you mean by "brain fog" though. I have had trouble making decisions and have become somewhat forgetfull but I attribute that to the fact that I am so anxious about all this.
Bliss32, did you get the seton? How is it working out for you. Did the doctor indicate whether it was permanent? Hope your doing well.
IJO, I'm so sorry that you have been diagnosed with Chron's disease. How are you feeling? Is the Chron's manageable? Have you been experiencing terrible symptoms bcse of it and are they able to control it?
Cheryl74, I hope you're doing ok and that surgery for the second fistula worked. Please write back and let us know whether it was successful or not.
Tcipress, how are you doing? You've been through so much, you're in my prayers along with everyone else. Please write back and let us know how it's going.
Silk, you've had a seton for two years! Wow. Is it still there? Did the doctor say it would be there permanently? I've never heard of it being in place for so long. What is your doctor's plan? Hope your doing well.
Kimbacat, my heart goes out to you. You too have been through so much. Please write back and let us know if you've had any success with any of your recent procedures. You mentioned fissures around your labia. Did the doctor say it would get better or keep recurring?
Therin, I have also been experiencing terrible fatigue. I get extremely tired during the day to the point of almost falling asleep. My energy is way down. I don't know specifically what you mean by "brain fog" though. I have had trouble making decisions and have become somewhat forgetfull but I attribute that to the fact that I am so anxious about all this.
Bliss32, did you get the seton? How is it working out for you. Did the doctor indicate whether it was permanent? Hope your doing well.
IJO, I'm so sorry that you have been diagnosed with Chron's disease. How are you feeling? Is the Chron's manageable? Have you been experiencing terrible symptoms bcse of it and are they able to control it?
Cheryl74, I hope you're doing ok and that surgery for the second fistula worked. Please write back and let us know whether it was successful or not.
Tcipress, how are you doing? You've been through so much, you're in my prayers along with everyone else. Please write back and let us know how it's going.
Silk, you've had a seton for two years! Wow. Is it still there? Did the doctor say it would be there permanently? I've never heard of it being in place for so long. What is your doctor's plan? Hope your doing well.
Kimbacat, my heart goes out to you. You too have been through so much. Please write back and let us know if you've had any success with any of your recent procedures. You mentioned fissures around your labia. Did the doctor say it would get better or keep recurring?
continued:
Giblett, you have also been through so much. Flap failures etc. How is the drain tube working for you? Did your surgeon indicate what his plan was? Also, have you had the fistulotomy or fistulectomy yet? I thought that the flap surgery was suggested only if a fistulotomy or ectomy failed and they had to explore another option. But I'm not certain. How is your condition and is there any other way you would have done this if you had to go through it again? Any regrets? Please write back and you're in my prayers.
Sweetcin, I'm so sorry you've had two flap failures as well. How is the seton placement working for you? Hope your doing well.
Also, can anyone comment on whether the seton placement interferes with sexual intercourse? How has everyone been dealing with that issue? I think that's a valid and very important question.
You're all in my prayers.
Giblett, you have also been through so much. Flap failures etc. How is the drain tube working for you? Did your surgeon indicate what his plan was? Also, have you had the fistulotomy or fistulectomy yet? I thought that the flap surgery was suggested only if a fistulotomy or ectomy failed and they had to explore another option. But I'm not certain. How is your condition and is there any other way you would have done this if you had to go through it again? Any regrets? Please write back and you're in my prayers.
Sweetcin, I'm so sorry you've had two flap failures as well. How is the seton placement working for you? Hope your doing well.
Also, can anyone comment on whether the seton placement interferes with sexual intercourse? How has everyone been dealing with that issue? I think that's a valid and very important question.
You're all in my prayers.
Giblett,
I am so sorry that you are experiencing all of this. You are in my prayers. I have just been diagnosed as having a fistula and I am terrified. My surgeon told me he wanted to perform a fistulotomy, but after reading all of your accounts I wonder if it's going to help or cause more problems. I don't know what to do..to have the surgery or not..not that I have much of a choice..the surgeon told me I didn't have much of a choice, and that not having it could cause a secondary fistula. So far I've had the abcess drained 3 times. One thing though, that I am not hearing anyone say that their surgeon mentioned. If the abscess is caused by an anal gland becoming blocked and filled with bacteria which then leads to the fistula forming...then it would seem reasonable to destroy the gland. If the surgeon can locate the anal gland that is the culprit, then why not destroy it? Also giblett1, did your surgeon give you any indication of whether there is an end in sight? Also, why did you decide to refuse the illiostomy?? Giblett1, please respond as soon as possible as I may be going through the same things soon. Any advice for me? I'm just as upset as everyone else here.
I am so sorry that you are experiencing all of this. You are in my prayers. I have just been diagnosed as having a fistula and I am terrified. My surgeon told me he wanted to perform a fistulotomy, but after reading all of your accounts I wonder if it's going to help or cause more problems. I don't know what to do..to have the surgery or not..not that I have much of a choice..the surgeon told me I didn't have much of a choice, and that not having it could cause a secondary fistula. So far I've had the abcess drained 3 times. One thing though, that I am not hearing anyone say that their surgeon mentioned. If the abscess is caused by an anal gland becoming blocked and filled with bacteria which then leads to the fistula forming...then it would seem reasonable to destroy the gland. If the surgeon can locate the anal gland that is the culprit, then why not destroy it? Also giblett1, did your surgeon give you any indication of whether there is an end in sight? Also, why did you decide to refuse the illiostomy?? Giblett1, please respond as soon as possible as I may be going through the same things soon. Any advice for me? I'm just as upset as everyone else here.
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