Bea, Thank you, thank you, it feels endless, doesn't it? How are you feeling? Are you back in a good place, mentally? I hope so... I wish you didn't live a continent away. By thoughts are always with you. b
Penny-thanks, thinking of you, i just posted above an update...trying to be careful with diet... be good, B
RLW- how big is your fistula now?
B
Penny-thanks, thinking of you, i just posted above an update...trying to be careful with diet... be good, B
RLW- how big is your fistula now?
B
Loading...
B- I'm not really sure how big the fistula is now. My CRS says it's smaller than before, but that is pretty obvious to me since I'm not passing through nearly as much BM. Since my sphincteroplasty, I have been passing a thick, liquidy stool through or sometimes just specks of stool in mucousy discharge (sorry, gross). Prior to the surgery I was passing large olive-sized poo, so this is a step in the right direction. The CRS will be doing an anal ultrasound in October to get a better look to gauge size, etc. I'm hoping (praying!) it will be closed by then. I haven't had anything come through in a few days, but when I do my kegels it feels like something is stuck up there - like if you do kegels with a tampon in. I hope this doesn't mean that there is a piece of poo lodged in the fistula, but don't know what else would account for this feeling. Who knows? This is all so confusing.
B- I'm hopeful that your burning pee is only due to a UTI or something. Never thought I'd wish a UTI on someone, but they are so much easier to treat than a fistula, so let's hope for that. Have you been to a doctor yet?
Bea- my thoughts are with you. I lived in the UK for a few years and was so confused by the whole medical system. I don't know how you navigate it, but hope that your body heals itself and you don't have to revisit any of this again. Keep us posted on everything.
Baby's asleep. Time that mommy rests too. Take care of yourselves!!
Praying for miracles for us all,
RLWmom
B- I'm hopeful that your burning pee is only due to a UTI or something. Never thought I'd wish a UTI on someone, but they are so much easier to treat than a fistula, so let's hope for that. Have you been to a doctor yet?
Bea- my thoughts are with you. I lived in the UK for a few years and was so confused by the whole medical system. I don't know how you navigate it, but hope that your body heals itself and you don't have to revisit any of this again. Keep us posted on everything.
Baby's asleep. Time that mommy rests too. Take care of yourselves!!
Praying for miracles for us all,
RLWmom
Loading...
Hi everyone, boy, site has been busy !!
Cj, I too suffer from diarrhea all the time, more so when I get worked up or anxious...so I try to stay on the insoluable fiber diet which sounds alot like what you do. lots of "white, starches" and no fresh veg and fruit if I can help it. I still have very liquidy stools flowing thru the ostomy. I eat benefiber too, and take lactinex and pretty much accepted that this is my suped up body's way of digestion, which is why I have Stella Stoma. I like coffee though.....not good ! I am planning on a return trip to CRS next month to see what fistula is doing. My MD said she couldn't see a hole on the vag end when I had her do the lady exam....so hope?
beegirl...what the heck is going on? no no , we can't have you worrying that RVf is back, try to think positive, I know it's hard, we all been there and sometimes I think the nerves wear on you while you are on constant guard with these buggers....Call your Dr to ask the questions....please. the vag burning may not be fistula related, so rule out all the other pssibilitie first...no jumping to conclusions just yet.....
Penny, I researched the loop ostomy too, how odd is that? I have a cut end one that is tied off underneath the tummy, I guess the idea behind the loop vs the cut end is the loop is to be easier to reverse when the time comes. But since I have already survived a complete resection, I know what to expect when my time comes, whenever that will be.
Bea, are you making progressive? Feeling a lttle moe like you have a handle on this situation/ Plese let us know as we do care.
everyone else, stay tough and think happy thoughts, that'll get you thru some down times....
Flower
Cj, I too suffer from diarrhea all the time, more so when I get worked up or anxious...so I try to stay on the insoluable fiber diet which sounds alot like what you do. lots of "white, starches" and no fresh veg and fruit if I can help it. I still have very liquidy stools flowing thru the ostomy. I eat benefiber too, and take lactinex and pretty much accepted that this is my suped up body's way of digestion, which is why I have Stella Stoma. I like coffee though.....not good ! I am planning on a return trip to CRS next month to see what fistula is doing. My MD said she couldn't see a hole on the vag end when I had her do the lady exam....so hope?
beegirl...what the heck is going on? no no , we can't have you worrying that RVf is back, try to think positive, I know it's hard, we all been there and sometimes I think the nerves wear on you while you are on constant guard with these buggers....Call your Dr to ask the questions....please. the vag burning may not be fistula related, so rule out all the other pssibilitie first...no jumping to conclusions just yet.....
Penny, I researched the loop ostomy too, how odd is that? I have a cut end one that is tied off underneath the tummy, I guess the idea behind the loop vs the cut end is the loop is to be easier to reverse when the time comes. But since I have already survived a complete resection, I know what to expect when my time comes, whenever that will be.
Bea, are you making progressive? Feeling a lttle moe like you have a handle on this situation/ Plese let us know as we do care.
everyone else, stay tough and think happy thoughts, that'll get you thru some down times....
Flower
Loading...
Thank you guys, all of your comments are helpful and reassuring... Today, I had a little fecal matter there--but then I had really bad d. and nothing came through, so it must just be there small, like you said CJ. Oh well, it is just tough--I am speaking to the choir. Ha.
CJ- I am gonna do low-residue again...as my period comes on, it usually (no matter what) makes me have d. ugh... but like i said today pure water basically came out- and nothing that I noticed via the fistula-
I know about where it is-mine was once huge-that is the only reason I know where abouts...
Thanks flower, I am gonna stay positive, I know it is there, but it may still heal over or as long as it doesn't get bigger...
I think I am just super sensitive because of everything I went through, I wanted not to go back to this...oh well. such is life.
Bea and Penny-hey ladies.
Be good all. B
CJ- I am gonna do low-residue again...as my period comes on, it usually (no matter what) makes me have d. ugh... but like i said today pure water basically came out- and nothing that I noticed via the fistula-
I know about where it is-mine was once huge-that is the only reason I know where abouts...
Thanks flower, I am gonna stay positive, I know it is there, but it may still heal over or as long as it doesn't get bigger...
I think I am just super sensitive because of everything I went through, I wanted not to go back to this...oh well. such is life.
Bea and Penny-hey ladies.
Be good all. B
Loading...
Hi B,
Wanted to ask if you saw my last longish post at the bottom of page 19? When they end up at the bottom and other people add to the thread right away I think they may get lost. I hope you're doing okay. I know it's tough. I think a call to the MD or a quick visit might be reassuring to you. We are all hoping that it is a false alarm and things will improve soon. Maybe the MD will give you something for the d. Let me know what it is as I could use something, too!
Hang in there, try to be positive and know even in the worse case you can take charge and get it done.
Penny
Wanted to ask if you saw my last longish post at the bottom of page 19? When they end up at the bottom and other people add to the thread right away I think they may get lost. I hope you're doing okay. I know it's tough. I think a call to the MD or a quick visit might be reassuring to you. We are all hoping that it is a false alarm and things will improve soon. Maybe the MD will give you something for the d. Let me know what it is as I could use something, too!
Hang in there, try to be positive and know even in the worse case you can take charge and get it done.
Penny
Loading...
Hello everyone!
I have been gone a while; had my operation Aug 20th (7th operation) and complete muscle reconstruction..o my; it was not only the most complicated operation but the most painful but I am three weeks post op now and doing a little bit better with the pain; not sure about the healing yet. Go to the doc next wed which will be four weeks out and praying for good news.
I have been gone so long and it is so late and I am just blah that I kinda just browsed what I missed and I saw several things about stoma issues. I also have a colostomy and have had problems from recessed stoma, to trips to the er for blockage and so on but I want to encourage everyone that in my opinion it is worth having as a temporary thing until your fistula is healed. it honestly becomes second hand. if you gain weight or have some stomach swelling you may notice that you are leaking more or constantly changing your wafer or your stoma is right level with your skin and even sometimes kinda like a crater hole around it...this happens to me if i bloat up and i know it happens when you gain weight. i use convatec moldable products and they are awsome and the thing i love the most is that you can call them and speak with their nurses explaining your issue or what you are having problems with and they will send you samples of different things for you to try that may work for you. I found this very helpful and is also how i resolved having a recessed stoma and constant leaking because of it with a wafer that kinda is like a bowl that goes down into that "hole" around the stoma helping to prevent the leakage and is so far working but have changed products several times due to changes and yes your stoma will continue to change shape and size and time goes on. O and if you have sensitive skin and the prep wipes or spray burns your skin the 3m cavalon prep wipes (or spray which i like better) is awsome...no sting or burn!!
i know this isn't really a page on stoma's but just noticed a lot...i have had mine since oct 08 if anyone wants to contact me for questions or advise i will be glad to share the knowledge i have which may or may not help you.
i pray that everyone is doing well. and really hoping i am healing this time. i don't think i can take much more mentally or physically. i do feel little air bubbles pass through my vagina but i think it may be kinda normal until completely healed from what i understand...any advise on this one?? one of the parts i hate the most is that the wound smells...my husband says he can't smell it except for everyone once in a while but i can all the time and it's awful to me but the doc said it is normal as long as i am running no fever with it.
they finally got my pain pretty comfy putting me on percacet 10mg every four hours and the 75 mg fetanyl pain patch...without it i can't move..literally!! I have been wearing gauze panties from the hospital since the operation on aug 20th because mine were too tight making pain worse with all the abd pads but today was the first day i wore panties, lol...yeah!!!
any advise on what age to start potting training a little boy? he knows where his peepee is and squats now when he stinks and is 15 months old. not sure what to do, how to do it, or even how to start...what kind of potty and so on??? any advise??
okay ladies...i know i covered a lot and am going to go for now..very tired!
night to all
Jess
***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use
I have been gone a while; had my operation Aug 20th (7th operation) and complete muscle reconstruction..o my; it was not only the most complicated operation but the most painful but I am three weeks post op now and doing a little bit better with the pain; not sure about the healing yet. Go to the doc next wed which will be four weeks out and praying for good news.
I have been gone so long and it is so late and I am just blah that I kinda just browsed what I missed and I saw several things about stoma issues. I also have a colostomy and have had problems from recessed stoma, to trips to the er for blockage and so on but I want to encourage everyone that in my opinion it is worth having as a temporary thing until your fistula is healed. it honestly becomes second hand. if you gain weight or have some stomach swelling you may notice that you are leaking more or constantly changing your wafer or your stoma is right level with your skin and even sometimes kinda like a crater hole around it...this happens to me if i bloat up and i know it happens when you gain weight. i use convatec moldable products and they are awsome and the thing i love the most is that you can call them and speak with their nurses explaining your issue or what you are having problems with and they will send you samples of different things for you to try that may work for you. I found this very helpful and is also how i resolved having a recessed stoma and constant leaking because of it with a wafer that kinda is like a bowl that goes down into that "hole" around the stoma helping to prevent the leakage and is so far working but have changed products several times due to changes and yes your stoma will continue to change shape and size and time goes on. O and if you have sensitive skin and the prep wipes or spray burns your skin the 3m cavalon prep wipes (or spray which i like better) is awsome...no sting or burn!!
i know this isn't really a page on stoma's but just noticed a lot...i have had mine since oct 08 if anyone wants to contact me for questions or advise i will be glad to share the knowledge i have which may or may not help you.
i pray that everyone is doing well. and really hoping i am healing this time. i don't think i can take much more mentally or physically. i do feel little air bubbles pass through my vagina but i think it may be kinda normal until completely healed from what i understand...any advise on this one?? one of the parts i hate the most is that the wound smells...my husband says he can't smell it except for everyone once in a while but i can all the time and it's awful to me but the doc said it is normal as long as i am running no fever with it.
they finally got my pain pretty comfy putting me on percacet 10mg every four hours and the 75 mg fetanyl pain patch...without it i can't move..literally!! I have been wearing gauze panties from the hospital since the operation on aug 20th because mine were too tight making pain worse with all the abd pads but today was the first day i wore panties, lol...yeah!!!
any advise on what age to start potting training a little boy? he knows where his peepee is and squats now when he stinks and is 15 months old. not sure what to do, how to do it, or even how to start...what kind of potty and so on??? any advise??
okay ladies...i know i covered a lot and am going to go for now..very tired!
night to all
Jess
***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use
Loading...
Hi Jess,
Good to hear back from you and glad you're past your surgery enough to be out of the worst pain. Just reading your post brings back so many memories. Let's hope this surgery is your last. What did they do exactly? My fistula came from a sphincteroplasty that didn't go well. Luckily the fistula is gone but I have good and bad days with continence.
So I'll focus on potty training. Some children train early but I think most people wait until they're closer to 3. You can always get a kid's potty chair and put it where he can see and use it. If he starts to make facial expressions like he's thinking about it you can direct him to it and give him lots of praise. Don't be surprised if he starts to use it and then gives it up. If he doesn't take to it readily I'd give it up til he's a bit older. Sometimes boys take a bit longer but not always!
Penny
Good to hear back from you and glad you're past your surgery enough to be out of the worst pain. Just reading your post brings back so many memories. Let's hope this surgery is your last. What did they do exactly? My fistula came from a sphincteroplasty that didn't go well. Luckily the fistula is gone but I have good and bad days with continence.
So I'll focus on potty training. Some children train early but I think most people wait until they're closer to 3. You can always get a kid's potty chair and put it where he can see and use it. If he starts to make facial expressions like he's thinking about it you can direct him to it and give him lots of praise. Don't be surprised if he starts to use it and then gives it up. If he doesn't take to it readily I'd give it up til he's a bit older. Sometimes boys take a bit longer but not always!
Penny
Loading...
Hey Penny! glad to hear from you also; making friends here mean so much as you yourself already know this because this is a hard thing that even though my spouse tries to be there for me he has no clue or understanding of how it has really effected me and made me feel unwanted, my self confidence down the drain and just ugh...you know?
i'm not exactly sure what the operation was called...too many technical words for me to keep up with but he made incision right at vagina going up all the way almost to the top of my butt crack and a couple of other in between along side and was able to find good muscle to bring down to fix the wall...i think it may be called something like a what you said...sphinteroplasty...not really sure though. what happened to finally get you fistula free? my biggest fear is that this one won't heal either because i have had so many failures but keep praying that it will and that i can have my colostomy reversed.
I will sure have to get a potty....that is when i get the money..my family has been paying our bills the last 15 months and everyone is at the end of having a hard time helping us so not sure what we are going to do anymore ....we have learned to go without and just wear the stained up, fadded, some with holes clothing we do have compared to us used to be able to dress nice and buy whatever we wanted anytime, ya know? i will have to start looking online for some good reviews on potties and you think if he is interested what should i do...use the diaper or go to pullups or what?? i am clueless but maybe i can learn some from baby forums!
thanks for your response Penny, it means more to me than you know!!
take care and will talk soon!
Jess
o yea, i am scared of the continence too when i get my colostomy reversed if it ever happens, did you ever have one? well, it has got to be better than with the fistula, right or no??
i'm not exactly sure what the operation was called...too many technical words for me to keep up with but he made incision right at vagina going up all the way almost to the top of my butt crack and a couple of other in between along side and was able to find good muscle to bring down to fix the wall...i think it may be called something like a what you said...sphinteroplasty...not really sure though. what happened to finally get you fistula free? my biggest fear is that this one won't heal either because i have had so many failures but keep praying that it will and that i can have my colostomy reversed.
I will sure have to get a potty....that is when i get the money..my family has been paying our bills the last 15 months and everyone is at the end of having a hard time helping us so not sure what we are going to do anymore ....we have learned to go without and just wear the stained up, fadded, some with holes clothing we do have compared to us used to be able to dress nice and buy whatever we wanted anytime, ya know? i will have to start looking online for some good reviews on potties and you think if he is interested what should i do...use the diaper or go to pullups or what?? i am clueless but maybe i can learn some from baby forums!
thanks for your response Penny, it means more to me than you know!!
take care and will talk soon!
Jess
o yea, i am scared of the continence too when i get my colostomy reversed if it ever happens, did you ever have one? well, it has got to be better than with the fistula, right or no??
Loading...
Hello...sure hope everyone is doing well !!
beegirl, I was telling my husband about your recent surgery and he asked how did you know it was safe to have the ostomy reversal done. What was the indicator that the fistula was gone before you went ahead with the reversal? I really want to be as sure as I can be before I have my reversal that the stupid thing is gone, healed and a thing of the past.....
What tests or what was the deciding factor with anyone on this site that led to the decision to as to when to get reversed from the ostomy?
Jess. Don't rush and put too much pressure on yourself or your son to get pott trained too soon. If you stress out, then that feeling gets transferred to him and he will get stressed too. My son was a bear to train and everyone was telling me at age 2 he should be 100% trained, but as it was he wasn't ready until age 3.....just like some kids suck the binky longer and use bottles longer than others....Each child is different. not right or wrong.
Bea........how are you? holding up ok?
stay positive ladies !
flower
beegirl, I was telling my husband about your recent surgery and he asked how did you know it was safe to have the ostomy reversal done. What was the indicator that the fistula was gone before you went ahead with the reversal? I really want to be as sure as I can be before I have my reversal that the stupid thing is gone, healed and a thing of the past.....
What tests or what was the deciding factor with anyone on this site that led to the decision to as to when to get reversed from the ostomy?
Jess. Don't rush and put too much pressure on yourself or your son to get pott trained too soon. If you stress out, then that feeling gets transferred to him and he will get stressed too. My son was a bear to train and everyone was telling me at age 2 he should be 100% trained, but as it was he wasn't ready until age 3.....just like some kids suck the binky longer and use bottles longer than others....Each child is different. not right or wrong.
Bea........how are you? holding up ok?
stay positive ladies !
flower
Loading...
Hey all,
Penny, I did see your post and appreciated it greatly-I am doing ok, I had a few spells of diarrhea, bad, and noticed some leakage, a little bit, so I am accepting what is and dealing with it-it is much better than it was and maybe will heal completely, plus I made it to the rest room each time and it was like pure water, so atleast I have control to that extent...How are you?
Flower-my doctor did a visual inspection and then did the reversal... I believe Penny had a dye test. I would recommend something...as maybe if I waited longer-it would be fully healed-Penny's did. Don't rush the ostomy and ask about the dye test.
Bea-how are you?
Be good everyone, B
Penny, I did see your post and appreciated it greatly-I am doing ok, I had a few spells of diarrhea, bad, and noticed some leakage, a little bit, so I am accepting what is and dealing with it-it is much better than it was and maybe will heal completely, plus I made it to the rest room each time and it was like pure water, so atleast I have control to that extent...How are you?
Flower-my doctor did a visual inspection and then did the reversal... I believe Penny had a dye test. I would recommend something...as maybe if I waited longer-it would be fully healed-Penny's did. Don't rush the ostomy and ask about the dye test.
Bea-how are you?
Be good everyone, B
Loading...
Hey!
Flower, thank you for the advice. I am thinking about doing my research and working on getting the funds to purchase a training potty being that me and my husband are both unemployed from this physical mess. Then set it out and introduce him to it and the one thing I learned or not really learned that came so natural to me as a first time mother is to never push the new things too much because there are so many changes going on at once on it's own that to change things for them make it even harder but if it is there and an option maybe he will be interested as he is extremely smart (that still doesn't tell us how long it will take him to pick the whole idea up) but he is very interested in it I think so I thought i would try at least that and with us being at home except for doctor visits I don't think it should be too bad and I surely won't stress about it...I learned that too from him refusing baby food to brushing teeth...i have learned to make everything a kinda smily/funny or singing tone to get these things done make it "fun" and his whole attitude changes because mine does...am I making any sense at all, haha!
Beegirl,
I have a colostomy and my doctor has checked progress several times to check the progress so we would know when it was completely healed and the reversal could be done but so far I still have the fistula and my crs sent me to another more experienced in more fistula repair types/ways a few hours away and if we can get me better i will also get the reversal. I say all of this to say that my doc always put me under light anestisia and put a scope/camera in and looked to make sure he could see everything..then again I guess it could vary on how hard things are to see from what area the fistula is in.
Good luck, will you be having this done anytime soon? I will be glad to be rid of mine but have all the anxiety of if I will have to learn how to go to the bathroom again and so on....well hope I helped.
Jess
Flower, thank you for the advice. I am thinking about doing my research and working on getting the funds to purchase a training potty being that me and my husband are both unemployed from this physical mess. Then set it out and introduce him to it and the one thing I learned or not really learned that came so natural to me as a first time mother is to never push the new things too much because there are so many changes going on at once on it's own that to change things for them make it even harder but if it is there and an option maybe he will be interested as he is extremely smart (that still doesn't tell us how long it will take him to pick the whole idea up) but he is very interested in it I think so I thought i would try at least that and with us being at home except for doctor visits I don't think it should be too bad and I surely won't stress about it...I learned that too from him refusing baby food to brushing teeth...i have learned to make everything a kinda smily/funny or singing tone to get these things done make it "fun" and his whole attitude changes because mine does...am I making any sense at all, haha!
Beegirl,
I have a colostomy and my doctor has checked progress several times to check the progress so we would know when it was completely healed and the reversal could be done but so far I still have the fistula and my crs sent me to another more experienced in more fistula repair types/ways a few hours away and if we can get me better i will also get the reversal. I say all of this to say that my doc always put me under light anestisia and put a scope/camera in and looked to make sure he could see everything..then again I guess it could vary on how hard things are to see from what area the fistula is in.
Good luck, will you be having this done anytime soon? I will be glad to be rid of mine but have all the anxiety of if I will have to learn how to go to the bathroom again and so on....well hope I helped.
Jess
Loading...
Hellooooooooooo
Jess, good attitude with the son, but remember you are the parent and not his best friend !! makes a big dif when they get older and you need them to toe the line with their attitude with you.....Ask around with other parents/family if anyone has a potty chair they would like to get rid of.....When did you get your colostomy? Is it a loop or cut end one?
Beegirl, after reading your advice, I will wait as long as I need to, my husband says so too, he plans on being right there when CRS checks things out so he can see too.....he is so ready for this saga to be over as I am too. My MD that did a visual on the vag end and she prescribed an estrogen cream to perhaps build up the wall between the rectum and vag to try and help the progress, for she couldn't see the opening just redness from where it is. Has anyone out there gone that route? She won't do long term as the heart factors into my health too.....
Penny, Bea...hope you are both doing well
flower
Jess, good attitude with the son, but remember you are the parent and not his best friend !! makes a big dif when they get older and you need them to toe the line with their attitude with you.....Ask around with other parents/family if anyone has a potty chair they would like to get rid of.....When did you get your colostomy? Is it a loop or cut end one?
Beegirl, after reading your advice, I will wait as long as I need to, my husband says so too, he plans on being right there when CRS checks things out so he can see too.....he is so ready for this saga to be over as I am too. My MD that did a visual on the vag end and she prescribed an estrogen cream to perhaps build up the wall between the rectum and vag to try and help the progress, for she couldn't see the opening just redness from where it is. Has anyone out there gone that route? She won't do long term as the heart factors into my health too.....
Penny, Bea...hope you are both doing well
flower
Loading...
Hello everyone,
I have been reading everyone's posts for several months now. I can identify with everybody. Before I get into details about my surgeries I want to make it clear that I have had anal crohns for years. So, my tissue has not been that healthy. I do not in any way want to discourage anyone. This problem is so difficult in so many ways. The physical and the mental. I feel like I need some support now from people who actually know how it is. Don't get me wrong, my family supports me but they really don't know what I am going through.
I have had 14 surgeries since May 2006. I started with a colostomy and a flap. Had the colostomy reversed in Aug 06 only for the fistula to come right back. Since then I have had numerous flaps, tissue either side of vagina grafted. December 08 I had the muscle taken from my leg and an ileostomy. Another failure. In June I guess you what have to say I was dissected as another poster said. I was taken apart in between the vagina and rectum and put back together. I am three months out from that surgery. I thought I was doing great. The surgeon said he didn't see a hole (my fistula is low). I am scheduled for a dye test on Oct 2. But the last couple of days I have had the dreaded discharge from the vagina. I told my dr. that I am paranoid about anything coming out the vagina and he said I have reason to be. I am so scared about the test. My nerves are getting the best of me. I am tired of suffering, as I know you all are. I want to say again, I have had anal crohns. I do not want to discourage anyone. Sometimes I just want to give up. But I keep thinking it will be alright. After all, there are a lot of people worse off than me. I have learned to deal with the ileostomy pretty pretty good. I even took a trip on an airplane. You learn to adjust. It gets to be second hand. Better than having all those accidents in your pants when the imodium didn't work.
Anyway, ladies I feel your pain as they say. I hope everyone gets straightened out. I especially feel for the young mothers. I have 13 month old twin grandsons that I have missed so much of their lives from recuperating. Can't pick them up...I know you all know the score. Take care everyone and I wish you all the best.
I have been reading everyone's posts for several months now. I can identify with everybody. Before I get into details about my surgeries I want to make it clear that I have had anal crohns for years. So, my tissue has not been that healthy. I do not in any way want to discourage anyone. This problem is so difficult in so many ways. The physical and the mental. I feel like I need some support now from people who actually know how it is. Don't get me wrong, my family supports me but they really don't know what I am going through.
I have had 14 surgeries since May 2006. I started with a colostomy and a flap. Had the colostomy reversed in Aug 06 only for the fistula to come right back. Since then I have had numerous flaps, tissue either side of vagina grafted. December 08 I had the muscle taken from my leg and an ileostomy. Another failure. In June I guess you what have to say I was dissected as another poster said. I was taken apart in between the vagina and rectum and put back together. I am three months out from that surgery. I thought I was doing great. The surgeon said he didn't see a hole (my fistula is low). I am scheduled for a dye test on Oct 2. But the last couple of days I have had the dreaded discharge from the vagina. I told my dr. that I am paranoid about anything coming out the vagina and he said I have reason to be. I am so scared about the test. My nerves are getting the best of me. I am tired of suffering, as I know you all are. I want to say again, I have had anal crohns. I do not want to discourage anyone. Sometimes I just want to give up. But I keep thinking it will be alright. After all, there are a lot of people worse off than me. I have learned to deal with the ileostomy pretty pretty good. I even took a trip on an airplane. You learn to adjust. It gets to be second hand. Better than having all those accidents in your pants when the imodium didn't work.
Anyway, ladies I feel your pain as they say. I hope everyone gets straightened out. I especially feel for the young mothers. I have 13 month old twin grandsons that I have missed so much of their lives from recuperating. Can't pick them up...I know you all know the score. Take care everyone and I wish you all the best.
Loading...
Dear Guest,
You say you have anal Crohns.....Does it ever go into remission? I have Crohns also and got it into remission via drugs and a resection, mine was (is, it never goes away) in the ileum though. Once you have an ostomy, won't the crohns, over time go into a state of remission with meds ? I feel so bad for you to have gone thru so much, it's heartbreaking. Healthy tissue is the key to the RVF healings in all of us, and w the Crohns...yikes ! Hang in there and wish you too all the best.
flower
You say you have anal Crohns.....Does it ever go into remission? I have Crohns also and got it into remission via drugs and a resection, mine was (is, it never goes away) in the ileum though. Once you have an ostomy, won't the crohns, over time go into a state of remission with meds ? I feel so bad for you to have gone thru so much, it's heartbreaking. Healthy tissue is the key to the RVF healings in all of us, and w the Crohns...yikes ! Hang in there and wish you too all the best.
flower
Loading...