Beegirl,
I am so happy to hear you are doing okay! If you don't mind me asking... how is sex? I know you said your life is getting back to normal. Does that include sex as well? Do you have any problems with your fistula when you are with your husband?
RLWmom,
How are you doing with the dialators?
Bea,
I am so sorry about your situation! You are so positive and I am glad you are not giving up!
Flower,
Things seem to be working out for you. If for some reason your fistula is still there but really small.... do you think you can live with it?
Hope your are doing well too Penny!
CJ
I am so happy to hear you are doing okay! If you don't mind me asking... how is sex? I know you said your life is getting back to normal. Does that include sex as well? Do you have any problems with your fistula when you are with your husband?
RLWmom,
How are you doing with the dialators?
Bea,
I am so sorry about your situation! You are so positive and I am glad you are not giving up!
Flower,
Things seem to be working out for you. If for some reason your fistula is still there but really small.... do you think you can live with it?
Hope your are doing well too Penny!
CJ
BEA-I AM SENDING YOU A BIG, BIG HUG!!!! At one point mine was super huge too--I will keep checking back--This stories are so hard-and I found when I had the ostomy toward the end, I was coming here a little less... I hate all of this!!! Just know I think of you often.
Kitty and Flower-Yes as successful as can be, I guess. Remember, I am not 100 percent, but as close as I care to be-never want to risk another repair-ever!!!! Have faith....
BE GOOD, Beegirl
Kitty and Flower-Yes as successful as can be, I guess. Remember, I am not 100 percent, but as close as I care to be-never want to risk another repair-ever!!!! Have faith....
BE GOOD, Beegirl
CJ-
I am still VERY nervous--my rvf is low, so I get nervous that something could happen-Once after we had sex- the next day I noticed a tiny, tiny bit of fecal matter come out but I had diarrhea, that made me nervous- but i think it was just because I had diarrhea- I get it a lot since the reversal....in general we are so busy that we aren't crazy active either-How about you? Do you notice any issues?
Be good, B
I am still VERY nervous--my rvf is low, so I get nervous that something could happen-Once after we had sex- the next day I noticed a tiny, tiny bit of fecal matter come out but I had diarrhea, that made me nervous- but i think it was just because I had diarrhea- I get it a lot since the reversal....in general we are so busy that we aren't crazy active either-How about you? Do you notice any issues?
Be good, B
Beegirl,
I haven't really had sex since my failed surgery since july. I have been too scared. My doctor says I have vaginisums, which means I tighten up and it makes things difficult. I have been trying to overcome this. I guess I was just wondering if your fistula hurts at all when you have sex? Can you feel it or tell that's it's there during sex? Did your doctor say anything about sex making it worse? Mine said that it wouldn't... but I still worry. I think if I know for sure that the fistula won't hurt or make things worse than i will be able to relax more. Anything you can tell me about that would be great.
I am starting to think that I will just live with this small fistula for now. I rarely get diarrhea so I don't pass stool. I still know it's there though because I will pass gas occasionally. UGH just when I think it could be gone I will pass gass! I just don't want to risk anything getting worse or having to deal with surgery. I just want to enjoy being a mom and my life. That's why I want sex to get back to normal too.
Thanks Beegirl for your help and any more advice you can give me about sex would be great.
Thanks,
CJ
I haven't really had sex since my failed surgery since july. I have been too scared. My doctor says I have vaginisums, which means I tighten up and it makes things difficult. I have been trying to overcome this. I guess I was just wondering if your fistula hurts at all when you have sex? Can you feel it or tell that's it's there during sex? Did your doctor say anything about sex making it worse? Mine said that it wouldn't... but I still worry. I think if I know for sure that the fistula won't hurt or make things worse than i will be able to relax more. Anything you can tell me about that would be great.
I am starting to think that I will just live with this small fistula for now. I rarely get diarrhea so I don't pass stool. I still know it's there though because I will pass gas occasionally. UGH just when I think it could be gone I will pass gass! I just don't want to risk anything getting worse or having to deal with surgery. I just want to enjoy being a mom and my life. That's why I want sex to get back to normal too.
Thanks Beegirl for your help and any more advice you can give me about sex would be great.
Thanks,
CJ
CJ.
I think I could live with a small fistula if only I didn't have diarrhea as my normal b.ms....That is what scares me, you all only have stool coming thru when you have that, but it's not the norm for you where it is for me. So I would have stool coming thru 5-6 times a day when I move my bowels, or try to hold it in. That is what scares me....I really don't want to risk another repair attempt either, but I am not sure I have much of a choice IF this is indeed not healed. It will be checked alot more intensive after I am under anthest. before the reversal. Went and had the blood work done today and now it's a waiting game until next Tues..........I'll be in touch
flower
I think I could live with a small fistula if only I didn't have diarrhea as my normal b.ms....That is what scares me, you all only have stool coming thru when you have that, but it's not the norm for you where it is for me. So I would have stool coming thru 5-6 times a day when I move my bowels, or try to hold it in. That is what scares me....I really don't want to risk another repair attempt either, but I am not sure I have much of a choice IF this is indeed not healed. It will be checked alot more intensive after I am under anthest. before the reversal. Went and had the blood work done today and now it's a waiting game until next Tues..........I'll be in touch
flower
Hi Flower,
Just to let you know we're thinking of you. I'm imagining you post reversal since the 9th of February. HOpe you made it home for Valentine's Day but if not hope they're treating you well at the hospital. Hoping too for positive news. Remembering my own experience I think everyone's very loose after the reversal. I had my ileo for over a year and a half so maybe that's why it took a long while to get to a more normal. Just recently things have improved with a probiotic and one wafer metamucil. Am debating over using something more or just giving this a chance. Every so often things get really firm over night so I hate to rock the boat, if you know what I mean. Keep us posted. Sending good vibes...
Penny
Just to let you know we're thinking of you. I'm imagining you post reversal since the 9th of February. HOpe you made it home for Valentine's Day but if not hope they're treating you well at the hospital. Hoping too for positive news. Remembering my own experience I think everyone's very loose after the reversal. I had my ileo for over a year and a half so maybe that's why it took a long while to get to a more normal. Just recently things have improved with a probiotic and one wafer metamucil. Am debating over using something more or just giving this a chance. Every so often things get really firm over night so I hate to rock the boat, if you know what I mean. Keep us posted. Sending good vibes...
Penny
Hi Penny, Well, I went in to hosp., Doc poked , prodded, checked things out and after almost an hour, decided the reversal was a go and did it. Woke up with no NG tube, cath, or anything other than my I.V. He said he wanted me to have a quick recovery and get out of hosp due to the increase in flu patients starting to come in, that was great !! had surgery Tues afternoon, up peeing, walking tues night, on a clear liquid diet Wed, bowels kicked in Wed a.m and guess what.. Wed night found stool in the vag.......................I flipped, Doc examined me and saw it too, and was really shocked....So, Thurs he did a more thorough exam ( unpleasant) and still can't find a hole, so we are at an impasse.where the heck is it coming from ? Went home Thurs at noon and as far as the surgery, I am getting along fine, mentally is a dif story of course. So far the amt has been minimal, only when I have a big liquid b.m, so I am trying to control my urges to go bathroom w anti-anix meds and the diarrhea w immodium. I did pass some gas thru the vag while I was in hospital too....not a good thing, so not sure where we are now, time to recover, regroup and think. How long as it been since your reversal? Things tend to firm up more(soft) overnight for me too, so I know what you mean by rocking the boat, it's tough to know what to do. Maybe this is a different fistula, maybe I still need to heal from the original one.....who knows, So wait and see...I hope everyone else out there is hanging in there with their own little piece of hell and know that we are all there for each other....thanks so much for the good vibes, I need them......
Flower
Flower
Hello Flower,
I am so sorry that there seems to still be a fistula. I don't understand why they couldn't find it under anesthia (sp). Does it seem better than before you had your ostomy? Even if you still have it maybe it will be better if it's smaller and you can control your bowels. Don't give up! You have come a long way! I will be praying and thinking about you!
CJ
I am so sorry that there seems to still be a fistula. I don't understand why they couldn't find it under anesthia (sp). Does it seem better than before you had your ostomy? Even if you still have it maybe it will be better if it's smaller and you can control your bowels. Don't give up! You have come a long way! I will be praying and thinking about you!
CJ
Hi Flower,
I am sorry, too, to hear things aren't 100%. I'm glad though that it sounds like your MD is determined to keep looking. Did I tell you about a test that my Gyno had planned to do, but didn't, that involved a balloon and water that they put in the rectum, I think, to see if any water then comes out the vagina and hopefully, then where. You may have already had it done but it was the first thing to come to mind. It would be great if you could keep it in check with finding a good way to firm things up. My reversal was just over a year ago and I'm just now feeling like I've made a little progress with the firming up thing. Align, taken for 2 months before the results kicked in, and then one metamucil wafer seem to help. I'm thinking to change the wafer to a pill if I can find one. I do think on occasion I have gas come through but I have to say it doesn't bother me at all since that is the extent of it. My biggest problem lately is the constant rash and irritation I seem to have almost all the time. I've tried so many things, I think I'll just head out to the derma's office and see if they can come up with something I can use daily that's not too strong. Do you think you can get to that point of firm stools? I know that's not typical for you. My CR surgeon told me after my reversal that if it was a small fistula she would work with me on dealing with it as is but I have to say that was very discouraging to hear. I can understand your flip! Who wants to deal with even a little bit of the problem after all that we've been through. How is your sphincteroplasty results? I hope I'm remembering right that you had one. If good, I envy you that!! I'm trying hard to be thankful for what I have but often find that hard to do. Let us know how you're doing and what you decide to do next. It does take a long while to get to what you can look at as typical for you. Like I mentioned it took a year for me so I wouldn't think that what you have now, consistancy wise, is what you can expect forever. Take care. We're all rooting for you! Penny
Penny
I am sorry, too, to hear things aren't 100%. I'm glad though that it sounds like your MD is determined to keep looking. Did I tell you about a test that my Gyno had planned to do, but didn't, that involved a balloon and water that they put in the rectum, I think, to see if any water then comes out the vagina and hopefully, then where. You may have already had it done but it was the first thing to come to mind. It would be great if you could keep it in check with finding a good way to firm things up. My reversal was just over a year ago and I'm just now feeling like I've made a little progress with the firming up thing. Align, taken for 2 months before the results kicked in, and then one metamucil wafer seem to help. I'm thinking to change the wafer to a pill if I can find one. I do think on occasion I have gas come through but I have to say it doesn't bother me at all since that is the extent of it. My biggest problem lately is the constant rash and irritation I seem to have almost all the time. I've tried so many things, I think I'll just head out to the derma's office and see if they can come up with something I can use daily that's not too strong. Do you think you can get to that point of firm stools? I know that's not typical for you. My CR surgeon told me after my reversal that if it was a small fistula she would work with me on dealing with it as is but I have to say that was very discouraging to hear. I can understand your flip! Who wants to deal with even a little bit of the problem after all that we've been through. How is your sphincteroplasty results? I hope I'm remembering right that you had one. If good, I envy you that!! I'm trying hard to be thankful for what I have but often find that hard to do. Let us know how you're doing and what you decide to do next. It does take a long while to get to what you can look at as typical for you. Like I mentioned it took a year for me so I wouldn't think that what you have now, consistancy wise, is what you can expect forever. Take care. We're all rooting for you! Penny
Penny
Hi Cj....we are all confused as to why it dr couldn't find it while I was under the anest. He is too, and both him and ny CRS from Cleveland Clinic knew excatly where to look. So far it seems to be smaller than before I had the ostomy and YES Penny my spchinters are working from the spchinteroplasty, thank goodness for that. The one test the CRS did was to give me a blue dye enema while I had a tampon in, I held my muscles real well and when the tampon came out there was nothing on it except at the very end where the string attaches to it, and we figured it was just transfer from having the b.m. I even put in one before I have b.m and the same results, the stool is below the tampon and shows up right at the string part, so it is a low one !!
Now, it seems that I have stool lodged up in the vag as far as my fingernail can go in. Dr says there is a ledge or pocket right in there that the stool lays on also. I mean he visually saw it. Maybe it is transfer but to me that is up a little too far for that! so I am trying to firm up the stools and not go as often. My hubby says maybe it's still in the healing process and we did the reversal too soon and it still needs to heal, so I have to keep it clean.....so many theories and yet no one can confirm any one....Align....what is that? a probiotic? I am on a soluable fiber diet and it seems to help firm me up a bit.
Penny, what is the rash the direct result of? leakage? I had that and I used dipaer rash ointment after a b.m in that area to protect from the harsh irritating stools. I will have to find the patience to deal with this and adapt I guess, I really don't want anymore surgeries as the fistulas seem to get bigger after cutting....thanks for all the good thoughts and we'll be in touch. Has anyone heard from B and beegirl...how are they?
flower
Now, it seems that I have stool lodged up in the vag as far as my fingernail can go in. Dr says there is a ledge or pocket right in there that the stool lays on also. I mean he visually saw it. Maybe it is transfer but to me that is up a little too far for that! so I am trying to firm up the stools and not go as often. My hubby says maybe it's still in the healing process and we did the reversal too soon and it still needs to heal, so I have to keep it clean.....so many theories and yet no one can confirm any one....Align....what is that? a probiotic? I am on a soluable fiber diet and it seems to help firm me up a bit.
Penny, what is the rash the direct result of? leakage? I had that and I used dipaer rash ointment after a b.m in that area to protect from the harsh irritating stools. I will have to find the patience to deal with this and adapt I guess, I really don't want anymore surgeries as the fistulas seem to get bigger after cutting....thanks for all the good thoughts and we'll be in touch. Has anyone heard from B and beegirl...how are they?
flower
Hey ladies... Oh FLOWER, I am so so sorry... Remember I am not 100%-I still once in awhile get gas coming out the wrong way depending on how I am sitting--and tiny, tiny bits of stool, not that often--the weird thing with me is that I have had massive diarrhea since the surgery and it doesn't really come through that much but if I have more solid stool, I get a little vaginal bleeding and stool coming through-like if I wipe only. DOn't ask-weird. Trying to keep clean and positive. Lady we are all here with you, chin up, you are far from alone. I truly believe that DR.s really do not know the answers with these things... not yet. someday... I have just been living and happy and trying to forget it all as much as possible--but i always check in.
CJ- did I miss your question?
Bea-How r u?
Penny-hey..
All-much love. beegirl
CJ- did I miss your question?
Bea-How r u?
Penny-hey..
All-much love. beegirl
Beegirl,
I had just asked you questions about sex. I wanted to know if you can feel the fistula at all or if it bothers you during sex. I am trying to move on in my life with getting that back to normal but have been afraid. If you have any advice or encouragement I would appreciate it. My doctor says it's fine to have sex, but I just want to know for sure that it will all be okay!
Glad to hear you are doing better!
CJ
I had just asked you questions about sex. I wanted to know if you can feel the fistula at all or if it bothers you during sex. I am trying to move on in my life with getting that back to normal but have been afraid. If you have any advice or encouragement I would appreciate it. My doctor says it's fine to have sex, but I just want to know for sure that it will all be okay!
Glad to hear you are doing better!
CJ
Hey, beegirl good to hear you are doing well. Things have been going somewhat better for me, also. I seem to be having skin irritation almost all the time, though. I have tried diaper rash stuff which doesn't seem to be helping, nystatin, which helps some but I don't think I should use it all the time and sometimes hydrocortisone. I think it's from leakage but I have been having less since using the Align, yes, flower a probiotic that seems to help emptying. I'm wondering if something else is going on. I think I need to check in with a dermatologist.
Flower, I hear you're trying to keep the area clean but can't imagine how. I'm thinking of the time in the hospital where the nurses were wiping manually through the wound which hurt like crazy. I finally asked them to use water to clean things up and that helped immensely. Hoping it's not a painful thing for you.
Penny
Flower, I hear you're trying to keep the area clean but can't imagine how. I'm thinking of the time in the hospital where the nurses were wiping manually through the wound which hurt like crazy. I finally asked them to use water to clean things up and that helped immensely. Hoping it's not a painful thing for you.
Penny
Flower....I am really sorry that your reversal has not been as successful as we all have been hoping for. I am in the same situation as you, however, I need my third attempt at an RVF repair first. After two failed RVF surgeries and a third surgery in a short period (within a few months), I am not in a rush for a third RVF repair and reversal. I need time to regroup and figure out what to do from here. I had been hoping for your success story because I know it's time for you to have a resolution to this ongoing medical issue. I'm sure that's how we all feel. It's amazing what medical science can do these days.....heart/lung/liver transplants, even face transplants, yet they can't fix a hole between two places. Sigh. Nevertheless, try to keep those positive thoughts and your future options open because there will be good things coming your way. I think we just need to be positive and have as much patience as we can hopefully maintain despite these setbacks.
Hi Kitty...thanks for the encouragement......I have along w my husband who agrees with me, decided as long as i am not in any pain, I will try to live with this fistula as it seems to be alot smaller that before and to risk it getting bigger via a surgery is not a fun thing right now to think about. I ate fish last night (lent) and not a good idea, had some problems with the digestion so no more of that, I will get absolution from the church to eat chicken on Fri if I have to.
As long as I can keep the stool some what firm(er) I think I can deal with this. I agree, all the medical miracles out there and yet this little hole evades the medical society brains....I really was hoping for a success too, but please don't let this set you back and discourage anyone out there, Do you have a small or larger RVF ? everyone else, we will all be strong and be here for each other,I really am so glad I found this site......love to all
Flower
As long as I can keep the stool some what firm(er) I think I can deal with this. I agree, all the medical miracles out there and yet this little hole evades the medical society brains....I really was hoping for a success too, but please don't let this set you back and discourage anyone out there, Do you have a small or larger RVF ? everyone else, we will all be strong and be here for each other,I really am so glad I found this site......love to all
Flower