RLW-I have had my period come through the other end...just a little...b
CJ-My Doctor said that he doesn't see the fistula, but my symptoms show it is there-He told me to try to keep regular and hopefully it will heal over. I said I do NOT want anymore surgery, I can live with this...I only have a tiny bit of stuff come through if I have really watery stools. It does not really bother me. especially compared to how large it was... so, for me I am fine... Hope this helps. B
hi all-the board has been quiet-hope everyone is good....
Guest, sometimes they can heal or get smaller in time.
Michelle-yes, you are posting right!!!
CJ-hope you are well... hope it is getting smaller-- Today I had some leakage the wrong way, which is sad after going all through all that I have, but in the larger picture, it isn't that much-and I don't want to even think about anymore surgery. Ugh. How often do you notice leakage? How much? I am just glad I can make it to the bathroom without anything coming through and it not leaking all the time as it did before... and i had to always wear a pad, now it is not like that at all! I am still hoping it will heal over more in time.
Bea and Penny-how are you?
B
Guest, sometimes they can heal or get smaller in time.
Michelle-yes, you are posting right!!!
CJ-hope you are well... hope it is getting smaller-- Today I had some leakage the wrong way, which is sad after going all through all that I have, but in the larger picture, it isn't that much-and I don't want to even think about anymore surgery. Ugh. How often do you notice leakage? How much? I am just glad I can make it to the bathroom without anything coming through and it not leaking all the time as it did before... and i had to always wear a pad, now it is not like that at all! I am still hoping it will heal over more in time.
Bea and Penny-how are you?
B
Beegirl,
Since I had the surgery in July I have been trying to eat a low residue diet. My BM's don't seem to be as big and they are more formed. I also usually just go once a day. I have started though to eat other foods. But I am avoiding caffeinne and fried food. Anything that I think might make me sick to my stomach. I only seem to have leakage if I get diarrhea and can't get to the toilet fast enough. I had diarrhea about 4 weeks ago because I got really anxious and upset about some things and when I felt like I needed to go I tried to hold it in and that's when it leaked some through the fistula. If I had just gone to the bathroom and let it out I may not have had it leak through. So, I seem to be okay with not really having stool come through which I am happy about.
I do however still get gas! It seems to mainly happen in the morning when I get up from laying down. Throughout the day it doesn't seem to happen much. This is weird... but before the surgery, if I did get gas and try to hold it in it would go through the fistula. Well, now I seem to be able to hold it in and it doesn't go through. It's so hard to know how the fistula is healing because I can't see it. I have no idea how big it is. I posted before that the doctor had a difficult time finding it because it was so uncomfortable for me when he was trying to look.
Do you seem to leak even if you don't have diarrhea?
I don't know what I am going to do.... I just want this to be gone. It makes me so angry that I have it. I am afraid too though that another surgery could make it worse. I even wonder if I should see a urogynocologist. I do like my CRS, but wonder if I should seek another opinion. He talked about having my Gyn help with the next surgery since it would need to be a vaginal approach. What do you think about that?
Hope everyone is doing okay!
CJ
Since I had the surgery in July I have been trying to eat a low residue diet. My BM's don't seem to be as big and they are more formed. I also usually just go once a day. I have started though to eat other foods. But I am avoiding caffeinne and fried food. Anything that I think might make me sick to my stomach. I only seem to have leakage if I get diarrhea and can't get to the toilet fast enough. I had diarrhea about 4 weeks ago because I got really anxious and upset about some things and when I felt like I needed to go I tried to hold it in and that's when it leaked some through the fistula. If I had just gone to the bathroom and let it out I may not have had it leak through. So, I seem to be okay with not really having stool come through which I am happy about.
I do however still get gas! It seems to mainly happen in the morning when I get up from laying down. Throughout the day it doesn't seem to happen much. This is weird... but before the surgery, if I did get gas and try to hold it in it would go through the fistula. Well, now I seem to be able to hold it in and it doesn't go through. It's so hard to know how the fistula is healing because I can't see it. I have no idea how big it is. I posted before that the doctor had a difficult time finding it because it was so uncomfortable for me when he was trying to look.
Do you seem to leak even if you don't have diarrhea?
I don't know what I am going to do.... I just want this to be gone. It makes me so angry that I have it. I am afraid too though that another surgery could make it worse. I even wonder if I should see a urogynocologist. I do like my CRS, but wonder if I should seek another opinion. He talked about having my Gyn help with the next surgery since it would need to be a vaginal approach. What do you think about that?
Hope everyone is doing okay!
CJ
Hi all - Penny, Beegirl, Flower, CJ, RLW and new posters,
Sorry I have been a little quiet. I have reading posts quite a bit of the time but haven't been able to add much to what has already been said.
At the moment I have been taking immodium to try and reduce what gets passed through to the back passage (ie what the stoma doesn't output) and then when it does get there to make it firm so it doesn't go down the fistula so much. This seems to be working because the slower the stoma is in outputting the less it 'disappears' down out of sight and I think that is what is making stuff get through.
I have also been having a bath everyday. Someone else mentioned that they noticed their 'failed' or failing repair was smelly (not just in a poo way) and I did too. I figured that nothing is worse for the fistula than poo so bath water (no bubbles - its so long since I had bubbles!) was unlikely to make matters worse. And gradually the stuff from the fistula got less smelly and less. I also think that the fistula has got smaller as I had about 10 days without passing anything via the back passage. The recent happenings have resulted in less coming through the fistula. I know that doesn't make it healed but makes me feel less bad about the failure. As beegirl knows the thing can get bigger after the op and I dreaded that. I also haven't posted as I have been trying to do normal things and not think about it too much. I have been back to my salsa class and I walked 10 miles for charity a couple of weeks back - that felt so good. A real achievement. It was walking up one side of the river Thames and then back again with all the sights and landmarks of London to admire both sides - two good friends by my side too. Another friend of mine who has been trying to get pregnant for about 10 years has just done it - and I am so happy for her.
Bee girl I really feel for you. You seem to be taking it well but I dread exactly the same - that they reverse the stoma and then it comes back. At least it seems much smaller. I hope it stays that way. Like you I am weary of the ops. I don't know how much more I can take.
Anyway I hope everyone else is OK. I do think about you all and it is great to have this place to keep in touch. Who else can we talk to so frankly?
Bea
Sorry I have been a little quiet. I have reading posts quite a bit of the time but haven't been able to add much to what has already been said.
At the moment I have been taking immodium to try and reduce what gets passed through to the back passage (ie what the stoma doesn't output) and then when it does get there to make it firm so it doesn't go down the fistula so much. This seems to be working because the slower the stoma is in outputting the less it 'disappears' down out of sight and I think that is what is making stuff get through.
I have also been having a bath everyday. Someone else mentioned that they noticed their 'failed' or failing repair was smelly (not just in a poo way) and I did too. I figured that nothing is worse for the fistula than poo so bath water (no bubbles - its so long since I had bubbles!) was unlikely to make matters worse. And gradually the stuff from the fistula got less smelly and less. I also think that the fistula has got smaller as I had about 10 days without passing anything via the back passage. The recent happenings have resulted in less coming through the fistula. I know that doesn't make it healed but makes me feel less bad about the failure. As beegirl knows the thing can get bigger after the op and I dreaded that. I also haven't posted as I have been trying to do normal things and not think about it too much. I have been back to my salsa class and I walked 10 miles for charity a couple of weeks back - that felt so good. A real achievement. It was walking up one side of the river Thames and then back again with all the sights and landmarks of London to admire both sides - two good friends by my side too. Another friend of mine who has been trying to get pregnant for about 10 years has just done it - and I am so happy for her.
Bee girl I really feel for you. You seem to be taking it well but I dread exactly the same - that they reverse the stoma and then it comes back. At least it seems much smaller. I hope it stays that way. Like you I am weary of the ops. I don't know how much more I can take.
Anyway I hope everyone else is OK. I do think about you all and it is great to have this place to keep in touch. Who else can we talk to so frankly?
Bea
Hello everyone,
Just a quick post before I head out to acupuncture. I'm trying everything people recommend to improve bowel function but I have to say this doesn't seem to be doing anything at all. Has anyone else tried it?
It is good to hear from you Bea. It sounds like you're getting on with living which is what we all want to do. I have signed up for Tai Chi and Pottery Class, both as a very beginner and it feels good to get out of my head and away from the 'problem'.
It sounds like we're all still contending with something but overall I think things sound better for you Bea and Bee, too. I've tried to view my morning, mostly, issue of leaking kind of like having your period. An inconvenience but doable. Just mine is every morning for 2 to 3 hours instead of once a month for a week. Most times i have 20 hours or more of no issue at all so the percentages look good! It can be hard to stay positive but sometimes lowering expectations is a good thing and has to do until we decide otherwise. I'm thinking of those surgeries, too, Bee. We've been through so much. Time for some normalcy. How is school going? Do you have a good class this year?
I'm off. Thinking of all of us,
Penny
Just a quick post before I head out to acupuncture. I'm trying everything people recommend to improve bowel function but I have to say this doesn't seem to be doing anything at all. Has anyone else tried it?
It is good to hear from you Bea. It sounds like you're getting on with living which is what we all want to do. I have signed up for Tai Chi and Pottery Class, both as a very beginner and it feels good to get out of my head and away from the 'problem'.
It sounds like we're all still contending with something but overall I think things sound better for you Bea and Bee, too. I've tried to view my morning, mostly, issue of leaking kind of like having your period. An inconvenience but doable. Just mine is every morning for 2 to 3 hours instead of once a month for a week. Most times i have 20 hours or more of no issue at all so the percentages look good! It can be hard to stay positive but sometimes lowering expectations is a good thing and has to do until we decide otherwise. I'm thinking of those surgeries, too, Bee. We've been through so much. Time for some normalcy. How is school going? Do you have a good class this year?
I'm off. Thinking of all of us,
Penny
Hi everyone, been awhile, but i try to get on to read up when I can, been busy at work, filling in for the day gal who was and still is sick....
I go back to CLE Fri to have a check and find out what this fistula is doing, if anything, not getting real excited as you all can understand...CJ..sounds like you are on the right path to healing, what kinds of foods do you eat on this low residue diet?
I can't tell if the fistual is still there or not as nothing gets thru to that area from the colostomy, I have "pooped" out mucus a few times, but so far I haven't noticed any going thru the vag....and of course I had the yeasty beasty, so that complicated things.....So other than dealing with my colostomy and I am getting quite good at taking care of her....life is ho -hum, Oh I did foster a West Highland White Terrier dog from the Westie Rescue Foundation, and have decided to adopt him, he has some health issues too !....so that makes 3 westies wunning thru the house !! My cat is ticked off !! So after my trip to CLE, I'll let you all know what transpires...
take care and stay hopeful
Flower
I go back to CLE Fri to have a check and find out what this fistula is doing, if anything, not getting real excited as you all can understand...CJ..sounds like you are on the right path to healing, what kinds of foods do you eat on this low residue diet?
I can't tell if the fistual is still there or not as nothing gets thru to that area from the colostomy, I have "pooped" out mucus a few times, but so far I haven't noticed any going thru the vag....and of course I had the yeasty beasty, so that complicated things.....So other than dealing with my colostomy and I am getting quite good at taking care of her....life is ho -hum, Oh I did foster a West Highland White Terrier dog from the Westie Rescue Foundation, and have decided to adopt him, he has some health issues too !....so that makes 3 westies wunning thru the house !! My cat is ticked off !! So after my trip to CLE, I'll let you all know what transpires...
take care and stay hopeful
Flower
Flower,
I try to not to eat anything fried or have much caffeinne. I also eat a banana everyday, yogurt, and a plain bagel. I haven't been eating many vegetables... which is bad I know. I do eat salad and baked potatoes throughout the week. I also try to avoid anything greasy. I eat eggs too for breakfast. I am starting to eat more whole wheat bread and i added apples into my diet this week. My bowels seem to be okay. I still take a stool softner every night. I also drink LOTS of water.
Hope this helps! You seem to be doing better not getting anything coming through! : )
CJ
I try to not to eat anything fried or have much caffeinne. I also eat a banana everyday, yogurt, and a plain bagel. I haven't been eating many vegetables... which is bad I know. I do eat salad and baked potatoes throughout the week. I also try to avoid anything greasy. I eat eggs too for breakfast. I am starting to eat more whole wheat bread and i added apples into my diet this week. My bowels seem to be okay. I still take a stool softner every night. I also drink LOTS of water.
Hope this helps! You seem to be doing better not getting anything coming through! : )
CJ
CJ,
Just wanted to mention that I was going to have surgery by a gynocologist when he couldn't find the fistula. Not sure just how that happened. He was supposed to do a balloon/water type test but decided not to. That was one visit I wish I hadn't canceled. The post op visit even though I didn't have an operation I would still have like to know what he found or how he looked. HE was going to do a layering technique and said he had 100% siccess rate with it, which I question but that's what he said. Thanks for the info on the diet. I think I could be more conscientious (sp?)there.
Penny
Just wanted to mention that I was going to have surgery by a gynocologist when he couldn't find the fistula. Not sure just how that happened. He was supposed to do a balloon/water type test but decided not to. That was one visit I wish I hadn't canceled. The post op visit even though I didn't have an operation I would still have like to know what he found or how he looked. HE was going to do a layering technique and said he had 100% siccess rate with it, which I question but that's what he said. Thanks for the info on the diet. I think I could be more conscientious (sp?)there.
Penny
Thanks CJ, that sounds pretty much like the diet I was encouraged to go on and I was kind of, sort of, doing it, until I got this colostomy and then it's like, hey ! I can eat anything and I went off the low residue diet. I need to get back on track. Coffee being my weakest thing....
Penny, the layering tech.? Is this where they open up the fistula from end to end and stitch it closed layer by layer....? sort of like a BIG episiotomy? If so, that is what I had done in June and I started to develop another fistula that came out right thru the stitches, of course that was before I had the colostomy so I had tons of bacterium going thru too,which my local surgeon here said was the cause. I was told that this procedure usually works, but with any surgery there is always a fistula risk or a existing one getting bigger.
Bea and B, I sure hope things are improving in your lives as well, this is a great site to talk frankly about our bathroom habits !
I'll be in touch one way or another after Fri, I may need to vent.....
Flower
Penny, the layering tech.? Is this where they open up the fistula from end to end and stitch it closed layer by layer....? sort of like a BIG episiotomy? If so, that is what I had done in June and I started to develop another fistula that came out right thru the stitches, of course that was before I had the colostomy so I had tons of bacterium going thru too,which my local surgeon here said was the cause. I was told that this procedure usually works, but with any surgery there is always a fistula risk or a existing one getting bigger.
Bea and B, I sure hope things are improving in your lives as well, this is a great site to talk frankly about our bathroom habits !
I'll be in touch one way or another after Fri, I may need to vent.....
Flower
Penny,
Okay, I know you have posted this before... but just want to make sure I have your story right.
You were going to have a transvaginal repair done by a gyn... then he couldn't find it when you were under anesthesia. When was he going to do the balloon/water test? In the office, or while you were under anesthesia?
I don't know what my next move is going to be. I really would like to have another surgery and have this thing gone... but it's scary to think it could fail again. I don't know if I have the strength to go through it all again. I feel like you have to wait 6 weeks after surgery before you can feel safe again that it's healed. The good thing is is that I don't think mine is worse from my failed repair this summer. At least I don't think it could be too much worse since my symptoms are minimal.
CJ
Okay, I know you have posted this before... but just want to make sure I have your story right.
You were going to have a transvaginal repair done by a gyn... then he couldn't find it when you were under anesthesia. When was he going to do the balloon/water test? In the office, or while you were under anesthesia?
I don't know what my next move is going to be. I really would like to have another surgery and have this thing gone... but it's scary to think it could fail again. I don't know if I have the strength to go through it all again. I feel like you have to wait 6 weeks after surgery before you can feel safe again that it's healed. The good thing is is that I don't think mine is worse from my failed repair this summer. At least I don't think it could be too much worse since my symptoms are minimal.
CJ
Hi CJ,
YEs, he had decided to do it while I was under anesthesia. But I don't believe he did it. I got that impression from my CRS who spoke to him at some point after my surgery that didn't end up being one. He would have done the balloon check and another sphincteroplasty at the same time. I know other people have gotten fistula's from just about any kind of surgery. It just seems like total success is hard to come by but I know some people have it. Just how to get there without more complicatioins! I am lucky, I think, in that while I was waiting for this gyno to see me it healed with the help of the ileo. I'm still not sure about water not coming through but that doesn't seem to be a problem. My problem is the result of my initial sphincteroplasty which left me in less control then I had originally. Good luck on your decision making. I found patience helpful but also hard.
Penny
YEs, he had decided to do it while I was under anesthesia. But I don't believe he did it. I got that impression from my CRS who spoke to him at some point after my surgery that didn't end up being one. He would have done the balloon check and another sphincteroplasty at the same time. I know other people have gotten fistula's from just about any kind of surgery. It just seems like total success is hard to come by but I know some people have it. Just how to get there without more complicatioins! I am lucky, I think, in that while I was waiting for this gyno to see me it healed with the help of the ileo. I'm still not sure about water not coming through but that doesn't seem to be a problem. My problem is the result of my initial sphincteroplasty which left me in less control then I had originally. Good luck on your decision making. I found patience helpful but also hard.
Penny
Penny...why did your spchinto plasty fail? I had one done and as far as I know it was successful except for the RVF that popped in front of it, so I am not sure it really did work or not. I do have to use the muscles when I have my mucus B.Ms. Doc said the muscles are intact from where he fixed them so time will tell on that....
I went to have Freddie Fistula checked out yesterday and Doctor says it is healed.....a very thin wall of tissue granted but he couldn't touch the scope thru the vag when he did a very thorough exam...ugh....It is still reddish at the site, and I don't think anything has been coming thru, but then again, everything is getting diverted thru the stoma. So we are resisting the temptation to have any surgery to try and re inforce and strengthen the thin wall, and will have it checked out agan after the first of the year to see if it has thickened to where I am comfortable enought to get the Colostomy reversed. My PCP said she couldn't see a hole when she did my annual pap on that side too, but could see where it was (is).. So all in all I am slightly hopeful, will live w Stella Stoma for another 6 months and take it from there.
So at least I now know what the future sort of holds for me, so I can make plans for the holidays and what nots !!
And yes...you can get fistulas from any type of surgery, even heart surgery, it's just more common in the rectum / intestinal as that is one of the filthiest, bacteria ridden areas in the body, and healing is a constant challenge. CJ, I would give it more time, as more surgery can make it bigger, penny is right, patience is a real benefit to these things.....It's hard, but when I see those out and about carrying oxygen, in wheelchairs, bald from chemo......I usually find the patience I need.
Chins up everyone and I hope we all make the right choices in our journey
Flower
I went to have Freddie Fistula checked out yesterday and Doctor says it is healed.....a very thin wall of tissue granted but he couldn't touch the scope thru the vag when he did a very thorough exam...ugh....It is still reddish at the site, and I don't think anything has been coming thru, but then again, everything is getting diverted thru the stoma. So we are resisting the temptation to have any surgery to try and re inforce and strengthen the thin wall, and will have it checked out agan after the first of the year to see if it has thickened to where I am comfortable enought to get the Colostomy reversed. My PCP said she couldn't see a hole when she did my annual pap on that side too, but could see where it was (is).. So all in all I am slightly hopeful, will live w Stella Stoma for another 6 months and take it from there.
So at least I now know what the future sort of holds for me, so I can make plans for the holidays and what nots !!
And yes...you can get fistulas from any type of surgery, even heart surgery, it's just more common in the rectum / intestinal as that is one of the filthiest, bacteria ridden areas in the body, and healing is a constant challenge. CJ, I would give it more time, as more surgery can make it bigger, penny is right, patience is a real benefit to these things.....It's hard, but when I see those out and about carrying oxygen, in wheelchairs, bald from chemo......I usually find the patience I need.
Chins up everyone and I hope we all make the right choices in our journey
Flower
Flower,
Good to hear that healing has taken place. Sounds like it is early days but once it has healed across hopefully it will strengthen more quickly. It seems to be getting it all to heal across at all which is the problem and you have achieved that! So I'm really pleased for you.
Bea
Good to hear that healing has taken place. Sounds like it is early days but once it has healed across hopefully it will strengthen more quickly. It seems to be getting it all to heal across at all which is the problem and you have achieved that! So I'm really pleased for you.
Bea
Hey all.
Just posting to say hello...say that my fistula is not leaking--yeah--so maybe it is pretty much gone!!!! I have had a lot of d. lately and it isn't coming through at all! There is hope with all this mess-just want to give you all some encouragement because there have many down times for me, hopefully they are mostly behind me, no pun intended. But I always think of you ladies and read up on how you are--Flower-how great that it is starting to look good-again the longer the better, I believe. Be good ladies, b
Just posting to say hello...say that my fistula is not leaking--yeah--so maybe it is pretty much gone!!!! I have had a lot of d. lately and it isn't coming through at all! There is hope with all this mess-just want to give you all some encouragement because there have many down times for me, hopefully they are mostly behind me, no pun intended. But I always think of you ladies and read up on how you are--Flower-how great that it is starting to look good-again the longer the better, I believe. Be good ladies, b