b.thanks for all the insight...i think I can handle this, got all my self pityout last night while all alone....you make it sound bearable, so again,thank you.............
I will ask Bea and Penny for their insight too.....ladies hint hint !!
Is showering a problem,I guess it's the little things I wonder about, I need to gain weight so that would be a plus and I am already on an anti depress for my aniexty that I have that produces even more diarehea thus multlple trips to bathroom......I did learn to stay on soulable diet as opposed to an insoulable one to help slow up the transit time after I eat so there are less trips to potty !!
when is your reversal scheduled for? I need positive remarks and thoughts and I told my sister NOT to act like the world is coming to an end or she can stay away..!
we'll all get well................
flower
I will ask Bea and Penny for their insight too.....ladies hint hint !!
Is showering a problem,I guess it's the little things I wonder about, I need to gain weight so that would be a plus and I am already on an anti depress for my aniexty that I have that produces even more diarehea thus multlple trips to bathroom......I did learn to stay on soulable diet as opposed to an insoulable one to help slow up the transit time after I eat so there are less trips to potty !!
when is your reversal scheduled for? I need positive remarks and thoughts and I told my sister NOT to act like the world is coming to an end or she can stay away..!
we'll all get well................
flower
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Flower,
I am glad I kinda helped. WIth diarrhea, the ostomy will be a dream!!!!! Neh, it is not the end of the world, just a change...and if you have a good sense of humor, it makes it easier. They have plastic cover, so yes you can shower...I will tell you more about that later--I wash up until I change it because I am always worried that it will make the system weaker or easier to slip (my own fears) then shower the day I change without the system on--which always feels like heaven.
My reversal is scheduled for the beginning of August, but again I wouldn't be surprised if i woke up with the ostomy still...so i am trying to just say what will be, will be.
With your crohns this will probably be a cake walk...
Be so well and remember so many people have them... I am 32, married, with a small child.... I am fine, our society is just not aware of this--it sounds gross.... but in reality it saves lives and helps people live better lives.
Have a great day, B
I am glad I kinda helped. WIth diarrhea, the ostomy will be a dream!!!!! Neh, it is not the end of the world, just a change...and if you have a good sense of humor, it makes it easier. They have plastic cover, so yes you can shower...I will tell you more about that later--I wash up until I change it because I am always worried that it will make the system weaker or easier to slip (my own fears) then shower the day I change without the system on--which always feels like heaven.
My reversal is scheduled for the beginning of August, but again I wouldn't be surprised if i woke up with the ostomy still...so i am trying to just say what will be, will be.
With your crohns this will probably be a cake walk...
Be so well and remember so many people have them... I am 32, married, with a small child.... I am fine, our society is just not aware of this--it sounds gross.... but in reality it saves lives and helps people live better lives.
Have a great day, B
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I am so glad i caught up with you !! I am feeling better already....a thought, what happens to the fistula and the drainage and all those problems "down there" that are the cause of everything once i get the ostomy? It doesn't effect your periods every month does it? Right now that too is sooooo gross to deal with.
I am 45 with 2 grown kids who are so supportive.....my daughter came home from college to be with me instead of staying and working the summer.....miss the money, but we'll make it, means more to have her here to help! And I have a husband that is great, very understanding and supportive, doesn't act like I am this grossed out creature to be not touched.....he always hugs me, heck he is the one who found the painful lump that sent me to the Dr. oh My CRS gave me the ok to go ahead w ostomy, so now it's a matter of when, sooner than later. i hope......
where does one purchase the ostomy supplies? Did you have this stoma cover to use?
Isn't it amazing, we can discuss heart disease, cancers, diabetes, but mention colon and people literally excuse themselves from the situation and run......you are right about the lack of knowledge in our society.......
I am 45 with 2 grown kids who are so supportive.....my daughter came home from college to be with me instead of staying and working the summer.....miss the money, but we'll make it, means more to have her here to help! And I have a husband that is great, very understanding and supportive, doesn't act like I am this grossed out creature to be not touched.....he always hugs me, heck he is the one who found the painful lump that sent me to the Dr. oh My CRS gave me the ok to go ahead w ostomy, so now it's a matter of when, sooner than later. i hope......
where does one purchase the ostomy supplies? Did you have this stoma cover to use?
Isn't it amazing, we can discuss heart disease, cancers, diabetes, but mention colon and people literally excuse themselves from the situation and run......you are right about the lack of knowledge in our society.......
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Flower- ask your doctor all these questions too, please... Write them down... I don't think there is any link between a change of periods and the ostomy, however mine has been dif. since I had the ostomy, maybe because of the dif. vitamins absorbed, I have no idea--it is lighter, for me... not sure why.
I get my supplies through edgepark- you can go directly through hollister or wherever- I use Convatec... because there is no cutting--I would suggest them to everyone--The first system I used was Hollister and it leaked--the system given to me (with paste) instead of the eakin was really intended for someone with a colostomy--not the ileo. which is more active...An ostomy nurse should walk you through this all.
ANd none of us are freaks, just unfortunate.
Danni-hang in there!!! You will get an answer eventually.
Bea and Penny-how are you guys?
Best, b
I get my supplies through edgepark- you can go directly through hollister or wherever- I use Convatec... because there is no cutting--I would suggest them to everyone--The first system I used was Hollister and it leaked--the system given to me (with paste) instead of the eakin was really intended for someone with a colostomy--not the ileo. which is more active...An ostomy nurse should walk you through this all.
ANd none of us are freaks, just unfortunate.
Danni-hang in there!!! You will get an answer eventually.
Bea and Penny-how are you guys?
Best, b
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Hi B...yes I am currently writing down all sorts of questions for both the doc and the nurse who will teach me to take care of this thing. My husband and my sister both want to learn also...I think they are afraid i am going to leave them forever.....I swear !!
My surgery is set for Tues 7-14....I am trying to learn and gear myself up here. Any advice for the hosppital stay? i am having this done at a local hospital vs the Cle clinic and I am a little nervous as CC is excellent when it comes to caring dr and staff....
What position does anyone, everyone find that is the best for sleeping, I do not want this thing to come undone....and I know my Westies won't be able to cuddle up against me either after I get this.....but I'll live. Maybe just maybe I can get some enjoyment yet out of this summer.....i will be anxious to hear how things turn out for you too...............
Flower
My surgery is set for Tues 7-14....I am trying to learn and gear myself up here. Any advice for the hosppital stay? i am having this done at a local hospital vs the Cle clinic and I am a little nervous as CC is excellent when it comes to caring dr and staff....
What position does anyone, everyone find that is the best for sleeping, I do not want this thing to come undone....and I know my Westies won't be able to cuddle up against me either after I get this.....but I'll live. Maybe just maybe I can get some enjoyment yet out of this summer.....i will be anxious to hear how things turn out for you too...............
Flower
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Flower,
Let's see-when you get the right system, leaking will not be so scary. In the beginning for me, I thought I would always be nervous...but as soon as I began using convatec and realized how well it worked for me; I was no longer nervous. I can now, sleep through the night without worrying, but it is sooooo full when I wake, so I have to run to the br to empty.... Again, you will find your comfort level quickly.
Hospital stay was three days, I believe. I was out of it on pain killers...it took about two weeks before it really hit me, *I know that sounds weird* but when the painkillers were done, I was like oh wow, I have an ostomy... You won't be able to lift, as it can compromise the repair and the stoma.... Get stoma powder-I will check the name of mine--it is awesome for healing... um, I had some fecal matter that must have still been stuck in my lower system, so I did expel a good deal of times in the first four mos. then it stopped. I did have some come through the fistula, and i swore it was a failure, but it seems to have healed over time and may be completely gone (yeah) ummm. you will still get an urge to go--and mucous-every-so-often too.
Wow, Tuesday is so soon. I am here if you have any other ?'s.... Be good! B
Let's see-when you get the right system, leaking will not be so scary. In the beginning for me, I thought I would always be nervous...but as soon as I began using convatec and realized how well it worked for me; I was no longer nervous. I can now, sleep through the night without worrying, but it is sooooo full when I wake, so I have to run to the br to empty.... Again, you will find your comfort level quickly.
Hospital stay was three days, I believe. I was out of it on pain killers...it took about two weeks before it really hit me, *I know that sounds weird* but when the painkillers were done, I was like oh wow, I have an ostomy... You won't be able to lift, as it can compromise the repair and the stoma.... Get stoma powder-I will check the name of mine--it is awesome for healing... um, I had some fecal matter that must have still been stuck in my lower system, so I did expel a good deal of times in the first four mos. then it stopped. I did have some come through the fistula, and i swore it was a failure, but it seems to have healed over time and may be completely gone (yeah) ummm. you will still get an urge to go--and mucous-every-so-often too.
Wow, Tuesday is so soon. I am here if you have any other ?'s.... Be good! B
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Hi B,
It's me chiming! I just got back from my vaca. Still wish I were there but-what can you do. I've been thinking, b, about your next surgery. I went in to my second to last not knowing if I were going to have another sphincteroplasty, my memory of which is hell, really, or just an exam if the reversal was gone. I just assumed the worse, in my case I assumed the splasty hadn't healed so it was a good surprise when I discovered it was. Perhaps you could assume that your surgery will just be a quick look see and then it will be a pleasant surprise if they do the reversal. Will they do any xrays to see if they can see anything? I hope you can destress about it. Worst case, you'll still have the ostomy which you seem to be doing really well with for now. It would just take a bit longer.
Welcome everyone else who'se found this site. It's a place you can share the frustration and fear or any other emotion you might have. I'm not sure I have everyone straight but Flower I am glad to hear about your support with family. I am older, 60, and have 2 daughters that were able to help me through my surgeries. I also had work friends that helped me with the mental health part of it. I'm on the anti depressant, too. What kind are you on, if you don't mind my asking. I am trying to solidify things and wonder if my anti-d, Lexapro, might be contributing to loose stools. And what kind of diet are you on to slow things down? I've been able to eat most things but I had a real disastor, in my exagerated terms, while on vaca with frozen yogurt. I think it can take up to a year for your colon to get back to normal after an ostomy reversal.
I had a one piece bag that I changed every 4 days. My husband helped with the placement but otherwise I was on my own. They get you started with supplies at the hospital and if you're lucky you'll get an RN that will know something about the different kinds. It may take a few weeks to figure out what's best for you. It really helped my fistu;a heal but it took me a while to get used to it.
take care all,
Thinking of you, too, Bea. Are you taking any vacation time this summer? It felt so good for me to get away from home and think of other things.
Penny
It's me chiming! I just got back from my vaca. Still wish I were there but-what can you do. I've been thinking, b, about your next surgery. I went in to my second to last not knowing if I were going to have another sphincteroplasty, my memory of which is hell, really, or just an exam if the reversal was gone. I just assumed the worse, in my case I assumed the splasty hadn't healed so it was a good surprise when I discovered it was. Perhaps you could assume that your surgery will just be a quick look see and then it will be a pleasant surprise if they do the reversal. Will they do any xrays to see if they can see anything? I hope you can destress about it. Worst case, you'll still have the ostomy which you seem to be doing really well with for now. It would just take a bit longer.
Welcome everyone else who'se found this site. It's a place you can share the frustration and fear or any other emotion you might have. I'm not sure I have everyone straight but Flower I am glad to hear about your support with family. I am older, 60, and have 2 daughters that were able to help me through my surgeries. I also had work friends that helped me with the mental health part of it. I'm on the anti depressant, too. What kind are you on, if you don't mind my asking. I am trying to solidify things and wonder if my anti-d, Lexapro, might be contributing to loose stools. And what kind of diet are you on to slow things down? I've been able to eat most things but I had a real disastor, in my exagerated terms, while on vaca with frozen yogurt. I think it can take up to a year for your colon to get back to normal after an ostomy reversal.
I had a one piece bag that I changed every 4 days. My husband helped with the placement but otherwise I was on my own. They get you started with supplies at the hospital and if you're lucky you'll get an RN that will know something about the different kinds. It may take a few weeks to figure out what's best for you. It really helped my fistu;a heal but it took me a while to get used to it.
take care all,
Thinking of you, too, Bea. Are you taking any vacation time this summer? It felt so good for me to get away from home and think of other things.
Penny
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hello Penny...nice to meet you, I am lucky to have a great support team, I have told them all including the mom in law (MAJOR stress factor) that if anyone wants to act grossed out, negative or have smart comments then they need to stay the heck away from me. I need positive and happy supportive folks around me......
anyway, I take Lorazepam for my aniexty and to control the frequent trips to the bathroom which are all diarhrea...I try to eat a soluable fiber diet.....white bread, white rice, oatmeal, white potaotes, apples...no skins of any kind and I chew on Benefiber and/or Fiberchoice tablets through out the day. Stay away from what most people call fiber....broccoli, whole grains, wheat.....that PROMOTES loose stools....research the difference between soluable and insoluable fiber and you will be surprised. Diary, I have found, is a personal bane...either you can have it or not. somedays I can eat it,other days no way,it's run to the bathroom and fast.
So your one piece was one that you emptied, cleaned out and re-used...? that sounds like the most sensible thing as I get the feeling these things are not cheap... How far out does the stoma protrude? I think mine is going to be on the left side....I have had past resectons done on the right side and want to leave that area alone....I'm taking beegirl suggestion and writing down all sorts of questions.
I worry whether I will get a educated ostomy nurse to teach me too, my surgeon says she is good, so we will see. right now all I want is for the fistual ridden area to settle down, poop to quit comng thru the vag, and the new one.....so I can maybe be able to sit like a normal person.....once things settle down, then I will look into having them repaired or at least attemped again. Do these things ever heal on their own?
i am so sick of hospitals, the smell and the surgeries.........
i am so glad to have found this site.....flower
anyway, I take Lorazepam for my aniexty and to control the frequent trips to the bathroom which are all diarhrea...I try to eat a soluable fiber diet.....white bread, white rice, oatmeal, white potaotes, apples...no skins of any kind and I chew on Benefiber and/or Fiberchoice tablets through out the day. Stay away from what most people call fiber....broccoli, whole grains, wheat.....that PROMOTES loose stools....research the difference between soluable and insoluable fiber and you will be surprised. Diary, I have found, is a personal bane...either you can have it or not. somedays I can eat it,other days no way,it's run to the bathroom and fast.
So your one piece was one that you emptied, cleaned out and re-used...? that sounds like the most sensible thing as I get the feeling these things are not cheap... How far out does the stoma protrude? I think mine is going to be on the left side....I have had past resectons done on the right side and want to leave that area alone....I'm taking beegirl suggestion and writing down all sorts of questions.
I worry whether I will get a educated ostomy nurse to teach me too, my surgeon says she is good, so we will see. right now all I want is for the fistual ridden area to settle down, poop to quit comng thru the vag, and the new one.....so I can maybe be able to sit like a normal person.....once things settle down, then I will look into having them repaired or at least attemped again. Do these things ever heal on their own?
i am so sick of hospitals, the smell and the surgeries.........
i am so glad to have found this site.....flower
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Hi All,
Sorry I have been away for a while - partly just v busy and then not v well - some virus making me dizzy - nothing to do with the fistula.
Danni and flower - welcome to the site. I'm sorry about your problems. I think beegirl and Penny have been doing well answering questions. Danni, it sounds as though it is early days for you - something seems not to feel right for you but it is not clear that it is a fistula. I'd certainly keep maing a fuss until someone listens to because if you don't feel right then your body is telling you something. If it is a fistula it may take a little time to fully reveal itself. Mine was gradual - I had a Bartolin cyst which ruptured and caused mine. The fistula grew over 2 years from very little stuff coming through to quite a lot.
Flower - I haev a colostomy and the experience is different to an ileo. I don't know why an ileo is given in the States for RVFs as in the UK the received wisdom is that a colostomy is easiest unless you can't have one. colostomy output is more like normal output (pretty much the same) and is less because more water have been reabsorbed by the body. Also the motions are less continuous. Nothing when you are asleep - usually quite a lot first thing then another less active patch in the evening. SOme mornings the bowel is very active and fills a bag quickly. The more active it is first thing the less comes through the rest of the day = if I am lucky I change it before I go to work and then very little comes through the rest fo the day. I then change the bag a second time just before I go to bed so I am clean during the night. Other days it is active throughout the day more. Even so I am unlucky if I change the bag more than twice a day. I used closed pouches which are thrown away each time. Although I hated the idea of it once you get used to it - it really isn't too bad - especially as it is a temporary measure. The only down side with a colostomy is the sounds - farts unpredictably and sometimes (very seldom) loudly. I find it is worse in the evening (which at least is not at work and with friends who know if socialising) and also when more constipated - when output is more runny it is not so bad. I dread meetings at work in quiet rooms! I wouldn't mind if it sounded more like your tummy is rumbling but there is no gettting away from it. Overall from reading PEnny and B's posts I think I haev a good deal. I have never had an 'accident' with it leaking and only rarely ever any smell because I've managed to get the bag not to seal well enough.
Because i am in the UK, we have NHM Stoma nurses who look after us and advise any problems. The NHS provide the bags on prescription and it the company delivers to your door they don't even charge you the prescription fee so I am lucky. I have no idea how much you they really cost. The problem about re-use is that the bag is stuck to your skin and the worst thing is getting stool on your skin. So removing the bag and cleaning the skin is important. That is why I use one piece pouches so I can clean the skin everytime I change. But I also can not re-use the pouch. Another restrictor is the filter in the pouch which stops it blowing up like a bollon and stops smells. I find the filter fails quite quickly and sometimes I change the bag simply because I have a ballon stuck to me and not for any other reason ...
Anyway, I am glad you have found this cupport group. I have found it really helpful. I am about to have my fourth repair - the thrid that I had with the stoma has not worked....
B and PEnny - sorry I've been quiet. I hope you are both well.
B - we might be recovering at similar times. I really hope you get the reversal.
Bea
Sorry I have been away for a while - partly just v busy and then not v well - some virus making me dizzy - nothing to do with the fistula.
Danni and flower - welcome to the site. I'm sorry about your problems. I think beegirl and Penny have been doing well answering questions. Danni, it sounds as though it is early days for you - something seems not to feel right for you but it is not clear that it is a fistula. I'd certainly keep maing a fuss until someone listens to because if you don't feel right then your body is telling you something. If it is a fistula it may take a little time to fully reveal itself. Mine was gradual - I had a Bartolin cyst which ruptured and caused mine. The fistula grew over 2 years from very little stuff coming through to quite a lot.
Flower - I haev a colostomy and the experience is different to an ileo. I don't know why an ileo is given in the States for RVFs as in the UK the received wisdom is that a colostomy is easiest unless you can't have one. colostomy output is more like normal output (pretty much the same) and is less because more water have been reabsorbed by the body. Also the motions are less continuous. Nothing when you are asleep - usually quite a lot first thing then another less active patch in the evening. SOme mornings the bowel is very active and fills a bag quickly. The more active it is first thing the less comes through the rest of the day = if I am lucky I change it before I go to work and then very little comes through the rest fo the day. I then change the bag a second time just before I go to bed so I am clean during the night. Other days it is active throughout the day more. Even so I am unlucky if I change the bag more than twice a day. I used closed pouches which are thrown away each time. Although I hated the idea of it once you get used to it - it really isn't too bad - especially as it is a temporary measure. The only down side with a colostomy is the sounds - farts unpredictably and sometimes (very seldom) loudly. I find it is worse in the evening (which at least is not at work and with friends who know if socialising) and also when more constipated - when output is more runny it is not so bad. I dread meetings at work in quiet rooms! I wouldn't mind if it sounded more like your tummy is rumbling but there is no gettting away from it. Overall from reading PEnny and B's posts I think I haev a good deal. I have never had an 'accident' with it leaking and only rarely ever any smell because I've managed to get the bag not to seal well enough.
Because i am in the UK, we have NHM Stoma nurses who look after us and advise any problems. The NHS provide the bags on prescription and it the company delivers to your door they don't even charge you the prescription fee so I am lucky. I have no idea how much you they really cost. The problem about re-use is that the bag is stuck to your skin and the worst thing is getting stool on your skin. So removing the bag and cleaning the skin is important. That is why I use one piece pouches so I can clean the skin everytime I change. But I also can not re-use the pouch. Another restrictor is the filter in the pouch which stops it blowing up like a bollon and stops smells. I find the filter fails quite quickly and sometimes I change the bag simply because I have a ballon stuck to me and not for any other reason ...
Anyway, I am glad you have found this cupport group. I have found it really helpful. I am about to have my fourth repair - the thrid that I had with the stoma has not worked....
B and PEnny - sorry I've been quiet. I hope you are both well.
B - we might be recovering at similar times. I really hope you get the reversal.
Bea
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BEA- so glad to hear from you, yeah, we can discuss recovery right??? I am doing good, enjoying summer. Are you nervous about next procedure? I am.
Penny- Yeah, I am gonna think that way...You are right, the bag is not that bad for me... so that would be the worst, right? and it's not that bad.
Flower-hope you are well. I see Bea filled you in with the colo. The noises from mine sound like tummy growling, as I am a teacher and my kids have said, "you sound hungry," and we laugh. It has never really been embarrasing for me.
Danni-any answers yet?
Have a good weekend, B
Penny- Yeah, I am gonna think that way...You are right, the bag is not that bad for me... so that would be the worst, right? and it's not that bad.
Flower-hope you are well. I see Bea filled you in with the colo. The noises from mine sound like tummy growling, as I am a teacher and my kids have said, "you sound hungry," and we laugh. It has never really been embarrasing for me.
Danni-any answers yet?
Have a good weekend, B
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Hi Bea....so nice to meet you as well as everyone else on this site. What you said about the ileo vs. colost. makes sense and my husband was saying the same thing for a week !! I think I am having the colosto from what the Dr. indicated. I am waiting to talk with him to have him answer all my 200 questions I have come up with. I am ready mentally to have this procedure done and try to get on with life....I talked with my pharm. and he took me back to the supply room and showed me different products he stocks and says most of his clients use the Convetac instead of Hollister ? I will need to get educated on this as well.
Transit time for food has always been quite fast with me once I have eaten, will the same happen with the bag? Depending on what you eat, depends on the output and the frequency, correct? Oh and any suggestions on what to take to hospital with me to aid the recovery time for this? Did you still have a discharge from the RVF even though you have the colosto?
You are going in for # 4 wow. wish you all the best.............
These things are nasty, that's for sure
flower
Transit time for food has always been quite fast with me once I have eaten, will the same happen with the bag? Depending on what you eat, depends on the output and the frequency, correct? Oh and any suggestions on what to take to hospital with me to aid the recovery time for this? Did you still have a discharge from the RVF even though you have the colosto?
You are going in for # 4 wow. wish you all the best.............
These things are nasty, that's for sure
flower
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Hi Flower,
Everthing works much as before with the colosto - I have learnt a bit more about precisely what gets through the system quickly etc, and what stimulates output. Sadly becasue we have temporary colostomies (I mean it is good in one way) but the "downpipe" to your backpassage is still there and close to the stoma so some stuff still gets through and you still have bms from time to time - and yes I still get stuff through the fistula - that is why I know the repair still hasn't worked. Good thing is that it is much less often and as total volumes are less, amount through the fistual is less. I do think that my body is benefiting from that and the fistula maybe getting a little smaller - so maybe the repair this next time does have a better chance. Products - you tend to stick with the one you first go with, but do experiment. Basically the idea is that as we won't have ours for too long, getting the absolute best product is slightly less important. I use dansac one piece, but tried a hollister two-piece once. I think the type of appliance/pouch is the most important thing - one piece/two piece/drainable etc. Beyond that, things like how your skin gets on with the adhesive, the filter effectiveness, the bag size etc are factors but it is all a personal thing and the products are all very good now. We are so much luckier than a few years back.
Re recovery - I was kept in for a week until the stoma began to work properly. It made very loud noises at first and the cramps were bad but after a couple of weeks things got much better. The main thing is to try and get mobile as soon as you can as that helps with the bowel movement as well as general revoery. The worse thing is getting used to changing the bags becasue at first evrything is swollen and you are worried about touching it and possibly infecting things. they say if you get on top of the physical aspects of changing the bag then you usually cope well mentally - a positive attitude to managing it means you soon get on top of it and have some control over your life. You learn how to anticipate bag changes and daily life usually gets into a pattern. Don't be hard on your self or expect to achieve too much to quickly. There isn't much you need to worry about ther wise - stoma is helping the fistula just by being there.
Hope this helps - ask all the questions you need from the Dr. There may be dedicated stoma nurses who can help. Read all you can too - there are even videos of how to change a bag but in the end I didn't look at it before hand. In the end I just decided to cross my bridges when I got there.
Bea
Everthing works much as before with the colosto - I have learnt a bit more about precisely what gets through the system quickly etc, and what stimulates output. Sadly becasue we have temporary colostomies (I mean it is good in one way) but the "downpipe" to your backpassage is still there and close to the stoma so some stuff still gets through and you still have bms from time to time - and yes I still get stuff through the fistula - that is why I know the repair still hasn't worked. Good thing is that it is much less often and as total volumes are less, amount through the fistual is less. I do think that my body is benefiting from that and the fistula maybe getting a little smaller - so maybe the repair this next time does have a better chance. Products - you tend to stick with the one you first go with, but do experiment. Basically the idea is that as we won't have ours for too long, getting the absolute best product is slightly less important. I use dansac one piece, but tried a hollister two-piece once. I think the type of appliance/pouch is the most important thing - one piece/two piece/drainable etc. Beyond that, things like how your skin gets on with the adhesive, the filter effectiveness, the bag size etc are factors but it is all a personal thing and the products are all very good now. We are so much luckier than a few years back.
Re recovery - I was kept in for a week until the stoma began to work properly. It made very loud noises at first and the cramps were bad but after a couple of weeks things got much better. The main thing is to try and get mobile as soon as you can as that helps with the bowel movement as well as general revoery. The worse thing is getting used to changing the bags becasue at first evrything is swollen and you are worried about touching it and possibly infecting things. they say if you get on top of the physical aspects of changing the bag then you usually cope well mentally - a positive attitude to managing it means you soon get on top of it and have some control over your life. You learn how to anticipate bag changes and daily life usually gets into a pattern. Don't be hard on your self or expect to achieve too much to quickly. There isn't much you need to worry about ther wise - stoma is helping the fistula just by being there.
Hope this helps - ask all the questions you need from the Dr. There may be dedicated stoma nurses who can help. Read all you can too - there are even videos of how to change a bag but in the end I didn't look at it before hand. In the end I just decided to cross my bridges when I got there.
Bea
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I was reading and I have a lot in common with everyone! I am new to the site as of today but am also dealing with a rectovaginal fistula, now have a colostomy and waiting after four operations and a total of six proceedures..ugh..I posted my story under a new topic before I found you all..check it out and maybe I can join in with ya'll because I get really down and no one understands...they say it will be okay...they have no idea how I feel or how "alone" I feel.
Thank you all! :'(
Thank you all! :'(
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So maybe I can help with the dry spot....I was able to copy and past my info....
Hi! My name is Jessica, I am 27 and gave birth to my first precious baby boy on May 14, 2008 and he was only 6lb 8oz yet I had massive tearing and feces leaking through the vagina. I had one repair then two weeks later could hardly walk because I was in so much pain, went to the doctor and he admited me strait to the med center because I had an infection and another operation to clean it all up. The original wound looked good but the infection caused another tear. The first operation was in Aug 08.
In October I went into the hospital for a check-up..either I would be healing or if not I would wake up with a colostomy...I woke up with a colostomy...ugh..I hate it but have learned to deal with it but still not very comfortable with doing active things much less swimming..tried that..didn't work too well.
In Jan 09 I had another repair operation and all went well and had an outpatient proceedure in April 08 and my surgeon went in with a scope just to see the progress..all was looking good but I still had a hole, literally the size of the tip of a ball point pen. So we gave it more time and planned my last operation for this past June 25 which would also be the reversal of my colostomy just to wake up to find out that the ity bity pen hole wasn't healed.
The doc said that I was the first person in 15 years that he hasn't been able to "fix". He had deep sorrow in his face and said sorry at least ten times. He said what needs to happen now is...take muscle from my butt or thigh and fix the hole that way because if the scar tissue hasn't taken by now it isn't going to but he has never had this issue before much less done it so he is talking to other doctors and trying to find the "right" doctor for me.
At this point it has been over a year, I have missed most of my son's first year by being in the hospital, loopy on meds and/or not being able to even pick him up again besides the fact that I lost my job and it has just been overall the hardest year of my life with my health, mentally and the stress that the financial status and everything has taken on my marriage has all just been soooo hard. I have just wanted to give up. I sit here and just cry and cry very often but I always try to pick myself back up and keep going. I just want to be "normal" and have strength and just be me again.
At this point is there any hope that I will be "repaired"?
Please share your stories or any words of encouragement!
Advice??
Hi! My name is Jessica, I am 27 and gave birth to my first precious baby boy on May 14, 2008 and he was only 6lb 8oz yet I had massive tearing and feces leaking through the vagina. I had one repair then two weeks later could hardly walk because I was in so much pain, went to the doctor and he admited me strait to the med center because I had an infection and another operation to clean it all up. The original wound looked good but the infection caused another tear. The first operation was in Aug 08.
In October I went into the hospital for a check-up..either I would be healing or if not I would wake up with a colostomy...I woke up with a colostomy...ugh..I hate it but have learned to deal with it but still not very comfortable with doing active things much less swimming..tried that..didn't work too well.
In Jan 09 I had another repair operation and all went well and had an outpatient proceedure in April 08 and my surgeon went in with a scope just to see the progress..all was looking good but I still had a hole, literally the size of the tip of a ball point pen. So we gave it more time and planned my last operation for this past June 25 which would also be the reversal of my colostomy just to wake up to find out that the ity bity pen hole wasn't healed.
The doc said that I was the first person in 15 years that he hasn't been able to "fix". He had deep sorrow in his face and said sorry at least ten times. He said what needs to happen now is...take muscle from my butt or thigh and fix the hole that way because if the scar tissue hasn't taken by now it isn't going to but he has never had this issue before much less done it so he is talking to other doctors and trying to find the "right" doctor for me.
At this point it has been over a year, I have missed most of my son's first year by being in the hospital, loopy on meds and/or not being able to even pick him up again besides the fact that I lost my job and it has just been overall the hardest year of my life with my health, mentally and the stress that the financial status and everything has taken on my marriage has all just been soooo hard. I have just wanted to give up. I sit here and just cry and cry very often but I always try to pick myself back up and keep going. I just want to be "normal" and have strength and just be me again.
At this point is there any hope that I will be "repaired"?
Please share your stories or any words of encouragement!
Advice??
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Dear Ladies....
This message is to let you know... please do not worry. I am writing this from experience.
I had an RVF for over a year, due to complications from a perforated bowel surgery. Over a period of 19 months I had seven surgeries, along with multiple visits to the ER, constant irritation and yeast infections, pain, discomfort, etc.... What we've all been through....
My advice to you all is find a good colo-rectal surgeon to fix this problem. I saw 5 surgeons before I decided on the person who performed my surgery. If you can find someone who specializes in women's problems, all the better. A gynecological doctor will not help you. Perhaps a uro-gynecologist may help, depending on the location of the fistula.
Re: the colostomy/ileostomy... do not let this deter you. I know it sounds horrible to have your poop hanging in a bag on your body. But it is worth it. I had TWO bags. First a colostomy bag, then an ileostomy bag. It is a horrible inconvenience and embarrassing, yes. But if it can fix your fistula, it is worth it. It is a small price to pay, to have your life back to normal. Believe me, NO ONE will know, unless you tell them. And if someone finds out, WHO CARES?
I am writing this from experience. I know how hard it is. I want you all to be better. I went through two years of hell, and I now am finally feeling better. I deserve it. We ALL deserve it.
Please know that this can be cured. I didn't think it was possible. IT IS. Find a good colo-rectal surgeon.
I wish you all the best, truly!
This message is to let you know... please do not worry. I am writing this from experience.
I had an RVF for over a year, due to complications from a perforated bowel surgery. Over a period of 19 months I had seven surgeries, along with multiple visits to the ER, constant irritation and yeast infections, pain, discomfort, etc.... What we've all been through....
My advice to you all is find a good colo-rectal surgeon to fix this problem. I saw 5 surgeons before I decided on the person who performed my surgery. If you can find someone who specializes in women's problems, all the better. A gynecological doctor will not help you. Perhaps a uro-gynecologist may help, depending on the location of the fistula.
Re: the colostomy/ileostomy... do not let this deter you. I know it sounds horrible to have your poop hanging in a bag on your body. But it is worth it. I had TWO bags. First a colostomy bag, then an ileostomy bag. It is a horrible inconvenience and embarrassing, yes. But if it can fix your fistula, it is worth it. It is a small price to pay, to have your life back to normal. Believe me, NO ONE will know, unless you tell them. And if someone finds out, WHO CARES?
I am writing this from experience. I know how hard it is. I want you all to be better. I went through two years of hell, and I now am finally feeling better. I deserve it. We ALL deserve it.
Please know that this can be cured. I didn't think it was possible. IT IS. Find a good colo-rectal surgeon.
I wish you all the best, truly!
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