Hi everyone,
Yesterday I wrote a long involved post and lost it all when I tried to log in. Very frustrating.
I think I mainly described my ostomy, a one piece that I replaced every 4 to 5 days. I had problems with odor which I was trying to solve in different ways. I think most people can replace their own. MY husband helped with placement of the new one, otherwise, I was on my own. I had a system of plastic sheets that I'd tape to my stomach on 3 sides for showers. I didn't want to get it all wet and then have to dry with a dryer. That worked well. I swam with it and exercised with it and it would get a bit sweaty. I think I had a hard time of it overall-mentally that is. The antidepressant helped. The ostomy site helped, this site helped. I enjoyed B's post after she first got hers, being new to ostomyland. Ha. You have to find humor somewhere. My sister is a nurse and found it to be no big deal but then it wasn't hers. It's a whole other ballgame when it's you. Definitely try to have insurance pay. It took a while but they finally payed me back a big chunk of my ostomy expenses.
Hope all is well with you B and Bea. Hoping for good surgeries for both of you. I'm spending my time eating Activa and BranBuds with phyllum (SP).I have this Friday off so I'm excited about that. In a few weeks I go to the Cape with my sis, ysy. I hope the ocean is swimmable. When I had my ostomy I felt very courageous swimming with it even though I know people who do it all the time.
take care,
Penny
Yesterday I wrote a long involved post and lost it all when I tried to log in. Very frustrating.
I think I mainly described my ostomy, a one piece that I replaced every 4 to 5 days. I had problems with odor which I was trying to solve in different ways. I think most people can replace their own. MY husband helped with placement of the new one, otherwise, I was on my own. I had a system of plastic sheets that I'd tape to my stomach on 3 sides for showers. I didn't want to get it all wet and then have to dry with a dryer. That worked well. I swam with it and exercised with it and it would get a bit sweaty. I think I had a hard time of it overall-mentally that is. The antidepressant helped. The ostomy site helped, this site helped. I enjoyed B's post after she first got hers, being new to ostomyland. Ha. You have to find humor somewhere. My sister is a nurse and found it to be no big deal but then it wasn't hers. It's a whole other ballgame when it's you. Definitely try to have insurance pay. It took a while but they finally payed me back a big chunk of my ostomy expenses.
Hope all is well with you B and Bea. Hoping for good surgeries for both of you. I'm spending my time eating Activa and BranBuds with phyllum (SP).I have this Friday off so I'm excited about that. In a few weeks I go to the Cape with my sis, ysy. I hope the ocean is swimmable. When I had my ostomy I felt very courageous swimming with it even though I know people who do it all the time.
take care,
Penny
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Hey Penny,
Just wanted to say hello. Had a few nervous days about upcoming surgery..., but then went with friend and fam. to a museum today and dinner and it was so nice.... It is so easy to get worked up when you don't stay busy... I go for presurgical testing this week, then it will be soon and I will be at the next step....ha. I am glad you are enjoying the summer!
All-be good, hang in there. b
Just wanted to say hello. Had a few nervous days about upcoming surgery..., but then went with friend and fam. to a museum today and dinner and it was so nice.... It is so easy to get worked up when you don't stay busy... I go for presurgical testing this week, then it will be soon and I will be at the next step....ha. I am glad you are enjoying the summer!
All-be good, hang in there. b
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Hi everyone, been off i net a few days, family visiting from N.C..............I ventured out in public for the first time with new friend attached me, she behaved, had a long lunch and a nice afternoon.....I am waiting for my Doc to let me go back to work, been off since June 10, thankfully I work at the local University and they are very understanding......most people are....and the ones tht aren't...well, may they never have any health problems in thier lives......remember, what goes around comes around, I say. ..don't push yourself I am 45 and learned the hard way to take my time.....
CJ....I had a cut end colostomy.....NOTHING has been passing thu the lower colon and into the rectum, it all discharges into the bag, I use a drainable one, as I tend towards runny stools so that works best for me, haven't really had much gas yet.....I was never a gassy person before either. I am finding out that how you process food and how often is pretty much the same as before the colostomy...mine is on my left side below belly button.....of course, right where the waistband of most of my clothes rests.....But I managed to find a few slacks and I can wear my daughter's low rise jeans. i am just waiting for the swelling to go down so i am not so puffed from that, I can't change out a bag without changing the whole things as pushing on the wafer is not fun right now.....I have been changing out the wafer/pouch every 3-4 days. Bea.... if it leaks, will I know right away? I really am watching it.
My fistulas are there, they drain a little bit, but I flush the RVF one and keep it as clean as I can, they have settled down quite a bit since the Colostomy, so that is good, Now I wait.............Am trying to find a good Doc that has a better record of repairing these things....
So all in all, learning what to eat, what not to eat and finally able to sleep with out taking a pain pill !!! i agree this site posts things in a weird order......
take care of you all
Flower
CJ....I had a cut end colostomy.....NOTHING has been passing thu the lower colon and into the rectum, it all discharges into the bag, I use a drainable one, as I tend towards runny stools so that works best for me, haven't really had much gas yet.....I was never a gassy person before either. I am finding out that how you process food and how often is pretty much the same as before the colostomy...mine is on my left side below belly button.....of course, right where the waistband of most of my clothes rests.....But I managed to find a few slacks and I can wear my daughter's low rise jeans. i am just waiting for the swelling to go down so i am not so puffed from that, I can't change out a bag without changing the whole things as pushing on the wafer is not fun right now.....I have been changing out the wafer/pouch every 3-4 days. Bea.... if it leaks, will I know right away? I really am watching it.
My fistulas are there, they drain a little bit, but I flush the RVF one and keep it as clean as I can, they have settled down quite a bit since the Colostomy, so that is good, Now I wait.............Am trying to find a good Doc that has a better record of repairing these things....
So all in all, learning what to eat, what not to eat and finally able to sleep with out taking a pain pill !!! i agree this site posts things in a weird order......
take care of you all
Flower
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Hi All
Been quiet on this end. I've started to do the positive visualization thing. When I'm nursing the baby at night and it's quiet, I focus in on the fistula and envision it closing up. Here's hoping it'll help. I'm game for anything. I'm also thinking about trying Arnica Montana. A friend of mine said it's a pill-type thingy that can help with healing. Any thoughts?
Happy Monday!
RLWmom
Been quiet on this end. I've started to do the positive visualization thing. When I'm nursing the baby at night and it's quiet, I focus in on the fistula and envision it closing up. Here's hoping it'll help. I'm game for anything. I'm also thinking about trying Arnica Montana. A friend of mine said it's a pill-type thingy that can help with healing. Any thoughts?
Happy Monday!
RLWmom
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This site is driving me batty. I've been trying to post and I keep getting a message that I've been trying to get on too often so I need to wait 30 minutes. Is anyone else having this problem? I haven't posted for a week, I think, so I'm not sure what's up. I've sent 3 emails to their contact us place and never had a response. I know other sites are so easy to use, maybe we could all bolt en masse to a new site?
My suggestions to RWLmom is that I took zinc to promote healing and people told me to eat a lot of protein. Not sure how much healing could be directly tied to those things but just an idea.
Thinking of everyone and hoping for better times.
Hi B and Bea, hoping August is the definitive month for you.
Penny
My suggestions to RWLmom is that I took zinc to promote healing and people told me to eat a lot of protein. Not sure how much healing could be directly tied to those things but just an idea.
Thinking of everyone and hoping for better times.
Hi B and Bea, hoping August is the definitive month for you.
Penny
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Bea-How are you???? It is coming up quick... I have less than a week before the next step....a little nervous, of course. trying to stay busy. I hope you are good and ready...
Hey Penny-I am not having too many posting issues.... How are you, How is the summer?
All-be well, thinking of you. b
Hey Penny-I am not having too many posting issues.... How are you, How is the summer?
All-be well, thinking of you. b
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Hi B,
I'm OK - It's rushing towards us isn't it? I am quite excited and apprehensive all at once. I wish I didn't feel so hopeful - I should know by now that my chances aren't great. I seem to be getting more and more stuff through as BM (and consequently through the fistula which is as big as ever) and I don't know how to reduce that. Otherwise like you I am keeping busy. If I don't post again I will be thinking of you and hoping it all goes well. I'm sure you will be fine and I hope you get the reversal. Post as soon as you can.
CJ - just spotted that you asked me a question a while back - don't know why I didn't see it before. In answer - I had a Bartolin cyst which ruptured and caused the fistula. As a result the front end is not actually inside the vagina but tucked just behind it (but still in front of the perineanum (?sp). I had what I think are called layer repairs first - they went in from the front and cleaned it all out, used a vaginal flap to cover the fistula and then backed out closing it all up. The last time they went in via the back passage and just stiched the flap over the hole but did not try to close the fistulous tract, That was left to "heal over". I had a big infection with the first repair, a small infection with the second and no infection with the third but the third seems to have only recently stopped bleeding - something very strange happened with it. DOn't know if that helps? I'm hoping they revert to the first type of repair this time as with the stoma I think it might work.
Hope everyone is OK Flower, Penny, RLWMOm ....
Bea
I'm OK - It's rushing towards us isn't it? I am quite excited and apprehensive all at once. I wish I didn't feel so hopeful - I should know by now that my chances aren't great. I seem to be getting more and more stuff through as BM (and consequently through the fistula which is as big as ever) and I don't know how to reduce that. Otherwise like you I am keeping busy. If I don't post again I will be thinking of you and hoping it all goes well. I'm sure you will be fine and I hope you get the reversal. Post as soon as you can.
CJ - just spotted that you asked me a question a while back - don't know why I didn't see it before. In answer - I had a Bartolin cyst which ruptured and caused the fistula. As a result the front end is not actually inside the vagina but tucked just behind it (but still in front of the perineanum (?sp). I had what I think are called layer repairs first - they went in from the front and cleaned it all out, used a vaginal flap to cover the fistula and then backed out closing it all up. The last time they went in via the back passage and just stiched the flap over the hole but did not try to close the fistulous tract, That was left to "heal over". I had a big infection with the first repair, a small infection with the second and no infection with the third but the third seems to have only recently stopped bleeding - something very strange happened with it. DOn't know if that helps? I'm hoping they revert to the first type of repair this time as with the stoma I think it might work.
Hope everyone is OK Flower, Penny, RLWMOm ....
Bea
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Hello all,
We're getting some hot muggy weather here in the Northeast. I tend to stay indoors with the AC which makes me feel like I'm in a bubble but much preferable to sweating it out.
b, do you have a plan for post surgery, whichever way it goes? Is someone going to be available in case you need help for a couple of weeks? Have some books/videos or writing planned?
Bea, sorry to hear you're having more come through but hopefully, this surgery will help with that. Do you know what kind of surgery you'll be having. Forgive me if I've asked this already. I've been doing more forgetting than remembering lately. What time will you be taking off of work? Do you have help around? I don't recall if you have a spouse or family nearby.
I continue to try different probiotics. Nothing too awful happening. I really need to continue my kegels more religiously and going on a healthy diet wouldn't hurt. My husband just got put on a diet and he's like 6 pounds overweight while I'm probably 25 and ignoring the fact. I need some motivation!
take care to you all, enjoy the weekend,
Penny
We're getting some hot muggy weather here in the Northeast. I tend to stay indoors with the AC which makes me feel like I'm in a bubble but much preferable to sweating it out.
b, do you have a plan for post surgery, whichever way it goes? Is someone going to be available in case you need help for a couple of weeks? Have some books/videos or writing planned?
Bea, sorry to hear you're having more come through but hopefully, this surgery will help with that. Do you know what kind of surgery you'll be having. Forgive me if I've asked this already. I've been doing more forgetting than remembering lately. What time will you be taking off of work? Do you have help around? I don't recall if you have a spouse or family nearby.
I continue to try different probiotics. Nothing too awful happening. I really need to continue my kegels more religiously and going on a healthy diet wouldn't hurt. My husband just got put on a diet and he's like 6 pounds overweight while I'm probably 25 and ignoring the fact. I need some motivation!
take care to you all, enjoy the weekend,
Penny
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Hi Penny,
I am lucky that my Mum is coming to stay to look after me when I first come home and a neighbour will do any shopping after that. The doctor usually tells me 'not to move around too much' for 2 weeks after the operation so I will take off 2 weeks as usual but I have also decided to take a week's holiday afterwards as I'm due some and I hope that might help promote more healing if I am not at work - you do end up pushing yourself more at work. BUt who knows? At least I will have a rest and hopefully a change of scene depending how things go.
It sounds as though you have to manage things quite a lot still diet-wize which must be a pain.
Enjoy your weekend too - it is grey here and will probably rain ...
Bea
I am lucky that my Mum is coming to stay to look after me when I first come home and a neighbour will do any shopping after that. The doctor usually tells me 'not to move around too much' for 2 weeks after the operation so I will take off 2 weeks as usual but I have also decided to take a week's holiday afterwards as I'm due some and I hope that might help promote more healing if I am not at work - you do end up pushing yourself more at work. BUt who knows? At least I will have a rest and hopefully a change of scene depending how things go.
It sounds as though you have to manage things quite a lot still diet-wize which must be a pain.
Enjoy your weekend too - it is grey here and will probably rain ...
Bea
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hello
bea and b..If i don't get a chance, i want to wish you both the best of luck here.....stay positive for us...
I am doing ok with the colostomy....it just keeps hanging with me ...ha ha ha , no really, I did go back to work last thursday....Only my immediate boss knows what I have and when I am dealing with students that come in or other police officers.....if Stella stoma burps, gurgles, whatever, I smile and say I'm sorry.....
I am having some gas issues...am using pouches that have a filter that is supposed to let gas, but not odor out......not working, I woke up one morning at 4 a.m and literally had a huge balloon stuck to me, I swear if I were to pass any more gas, it would have exploded....so off to bathroom to burp it....yuck, not pleasant.
So for now, I am researching doctors at Cle Clinic to see who has the best track record in repairing these RVF and am trying to plot my next move. No-one will touch me until Nov at the earliest, so I have time. The RVF doesn't hurt anymore and it has very little drainage now, if I didn't know better, I wouldn't know I even had one, so preoccupied with the colostomy and learnign a new way of life. Just wish and pray that this heals on it's own......as we all do and have......
take care and again, good luck and stay positive
Flower
bea and b..If i don't get a chance, i want to wish you both the best of luck here.....stay positive for us...
I am doing ok with the colostomy....it just keeps hanging with me ...ha ha ha , no really, I did go back to work last thursday....Only my immediate boss knows what I have and when I am dealing with students that come in or other police officers.....if Stella stoma burps, gurgles, whatever, I smile and say I'm sorry.....
I am having some gas issues...am using pouches that have a filter that is supposed to let gas, but not odor out......not working, I woke up one morning at 4 a.m and literally had a huge balloon stuck to me, I swear if I were to pass any more gas, it would have exploded....so off to bathroom to burp it....yuck, not pleasant.
So for now, I am researching doctors at Cle Clinic to see who has the best track record in repairing these RVF and am trying to plot my next move. No-one will touch me until Nov at the earliest, so I have time. The RVF doesn't hurt anymore and it has very little drainage now, if I didn't know better, I wouldn't know I even had one, so preoccupied with the colostomy and learnign a new way of life. Just wish and pray that this heals on it's own......as we all do and have......
take care and again, good luck and stay positive
Flower
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Hi all!
Bea and B - just wanted to wish you both luck and let you know I was thinking about you! I hope all goes well and is successful!
Flower - I keep seeing people talk about the Cleveland Clinic, and I feel like I'm missing something. Is there a reason people with our problems go there? Should I be looking to them if I need another surgery?
Had another day without poo coming through yesterday. That's three BMs without passing through my vagina since my surgery in May. A small victory, but I'll take it. Here's hoping......
Stay strong ladies!
RLWmom
Bea and B - just wanted to wish you both luck and let you know I was thinking about you! I hope all goes well and is successful!
Flower - I keep seeing people talk about the Cleveland Clinic, and I feel like I'm missing something. Is there a reason people with our problems go there? Should I be looking to them if I need another surgery?
Had another day without poo coming through yesterday. That's three BMs without passing through my vagina since my surgery in May. A small victory, but I'll take it. Here's hoping......
Stay strong ladies!
RLWmom
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Hi everyone,
Just wanted to wish b and Bea good luck also on their next surgeries. I remember when the time comes it seems to come quickly. Hope things go well for both of you. I have had some good days and found some helpful probiotics that seem to work for me. Don't ask me about my physical therapy exercises, though!! Post when you can to let us know how you're doing. I'll be thinking of you and sending good vibes.
RLWmom,
That's great about your 3 days. Every little bit gives us hope to bring to the next step.
Hang in there everyone,
Penny
Just wanted to wish b and Bea good luck also on their next surgeries. I remember when the time comes it seems to come quickly. Hope things go well for both of you. I have had some good days and found some helpful probiotics that seem to work for me. Don't ask me about my physical therapy exercises, though!! Post when you can to let us know how you're doing. I'll be thinking of you and sending good vibes.
RLWmom,
That's great about your 3 days. Every little bit gives us hope to bring to the next step.
Hang in there everyone,
Penny
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RLW mom
I chose Cle over Pgh, not sure why , Was Cle a better choice...can't say for sure as I am still looking inot a 4th attepmt to repair the RVF..
Bee girl, what type of repair did you have done that resulted in success in closing off the fistula? I am wondering if doing the vag repair would be better than going thru rectum?
Penny, any suggestions on what I can do and take as supplements to maybe help heal these on their own? I take a multi vitamin, vit c, everything I take is chewable for better absorption due to my Crohns and fast digestion/transit time or else the pills pop out usually whole.
My next thought is, my current crs is the one that did the spchinto-plasty and tried to repair the fistulas, should I stay w him as he knows the ins and outs of me literally or take the chance of someone else who is unfamiliar with the "plumbing"? I have time to think this over and want to make a smart decision here.................the colostomy is doing fine, finding out what I should eat and not...taking lactinex tablets to help with the noise and eruptions that occur !!
Hope everyone is hanging in there and doing well, stay postitive !
Flower
I chose Cle over Pgh, not sure why , Was Cle a better choice...can't say for sure as I am still looking inot a 4th attepmt to repair the RVF..
Bee girl, what type of repair did you have done that resulted in success in closing off the fistula? I am wondering if doing the vag repair would be better than going thru rectum?
Penny, any suggestions on what I can do and take as supplements to maybe help heal these on their own? I take a multi vitamin, vit c, everything I take is chewable for better absorption due to my Crohns and fast digestion/transit time or else the pills pop out usually whole.
My next thought is, my current crs is the one that did the spchinto-plasty and tried to repair the fistulas, should I stay w him as he knows the ins and outs of me literally or take the chance of someone else who is unfamiliar with the "plumbing"? I have time to think this over and want to make a smart decision here.................the colostomy is doing fine, finding out what I should eat and not...taking lactinex tablets to help with the noise and eruptions that occur !!
Hope everyone is hanging in there and doing well, stay postitive !
Flower
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Hey Ladies,
I go home from the hospital today... I had the reversal and so far so good. I have evacuated my bowels and had gas come out the right way, which is great!
Penny-were you really nervous after-thinking that stuff may be coming through all the time? Just wondering... I had that bloody ugh evacuation a few times and all seems to be holding up...I only feel gas coming out the right way... but i am so nervous-ha... and there was a little "blood" when I wiped vaginally, but i think it was only "splatter" from the evacuation, but I am just a bundle of nerves about that....
anyway, I will write more later, a bit groggy from the pain meds...
Bea-how are you??????????? thinking of you.
Flower-i will write more later-my last repair was a vaginal layered approach.
Be good, b
I go home from the hospital today... I had the reversal and so far so good. I have evacuated my bowels and had gas come out the right way, which is great!
Penny-were you really nervous after-thinking that stuff may be coming through all the time? Just wondering... I had that bloody ugh evacuation a few times and all seems to be holding up...I only feel gas coming out the right way... but i am so nervous-ha... and there was a little "blood" when I wiped vaginally, but i think it was only "splatter" from the evacuation, but I am just a bundle of nerves about that....
anyway, I will write more later, a bit groggy from the pain meds...
Bea-how are you??????????? thinking of you.
Flower-i will write more later-my last repair was a vaginal layered approach.
Be good, b
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B................think positive and be optimist about this now, I know it is nerve wracking, but hang in there.......praying for you !!
I too had the layered repair in June, didn't work though, so onto the next step. been in touch with a few dr from CLe and when my general surgeon here that did my ostomy checked things out said the newer fistula looks smaller, he flushed it out, so there is hope for that one to heal, the rvf is the one that I am nervous about, he can't see that one, but said to give it more time, went back on the flagyl for a week and I have noticed the rvf is draining more so that may be a good sign.....better out than in !!
Bea....how are you holding up? give us all good news !!
flower
I too had the layered repair in June, didn't work though, so onto the next step. been in touch with a few dr from CLe and when my general surgeon here that did my ostomy checked things out said the newer fistula looks smaller, he flushed it out, so there is hope for that one to heal, the rvf is the one that I am nervous about, he can't see that one, but said to give it more time, went back on the flagyl for a week and I have noticed the rvf is draining more so that may be a good sign.....better out than in !!
Bea....how are you holding up? give us all good news !!
flower
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