Hi all,
Can I firstly thank you all for your supportive posts after my last post. You are such good friends to have out there and it meant so much to me. It helps me keep positive and focussed on forwards.
I am very pleased that Beegirl and Penny seem to be on balance, doing well - basically if I could be stoma-free and with much reduced synptoms I think I would be Ok with that. I can't see how I am going to be 100% based on your experiences - but maybe things can get a lot better.
FLower- I am so sorry to hear your news. My heart goes out to you. YOu have described the thing I dread - that we go through this thing of the stoma and still have a problem afterwards. I hope that as you get used to the reversal and start to come to terms with what has happened that you find it is at least better than before. If it happened to me I know I'd flip - I'd completely lose it - I'd be screaming and tearing the place down. THough we need to be positive as much as we can - there is also a place for acknowledging the sheer awfulness of what we are going through. I wish I could hug you - I wish I could make it better. The only bit of info I can provide is that I had a barium enema after my first repair with the stoma. This was a very diluted barium solution (like water) which they put up you backside. They x-ray you and then take most of it out. They then get you to expel the rest. This last bit is the most useful. The action of using the muscles pushes the enema where the fistula is if any. They x-ray you again to show if that has happened. That might help them find the fistual if it still not clear.
Meanwhile I visited St Marks for the first time. This was just for tests - endo anal ultrasound and physiology tests. I did learn that my fistula has moved - it now in the anal canal and not in the rectum where it was before - how can this have happened? I am confused and dreading now what the news will be. The only slight glimmer of hope is that it does mean that the rectum bit must have healed ...
For Kitty who asked (I think) I have had 3 vaginal flap (layered) repairs and one from the rectum side. Second two of these repairs was done with a stoma in place.
I think of you all even though I don't post so much these days. I hope there will be some more good news storys soon. Flower - hope you take care and look after yourself.
Bea
Can I firstly thank you all for your supportive posts after my last post. You are such good friends to have out there and it meant so much to me. It helps me keep positive and focussed on forwards.
I am very pleased that Beegirl and Penny seem to be on balance, doing well - basically if I could be stoma-free and with much reduced synptoms I think I would be Ok with that. I can't see how I am going to be 100% based on your experiences - but maybe things can get a lot better.
FLower- I am so sorry to hear your news. My heart goes out to you. YOu have described the thing I dread - that we go through this thing of the stoma and still have a problem afterwards. I hope that as you get used to the reversal and start to come to terms with what has happened that you find it is at least better than before. If it happened to me I know I'd flip - I'd completely lose it - I'd be screaming and tearing the place down. THough we need to be positive as much as we can - there is also a place for acknowledging the sheer awfulness of what we are going through. I wish I could hug you - I wish I could make it better. The only bit of info I can provide is that I had a barium enema after my first repair with the stoma. This was a very diluted barium solution (like water) which they put up you backside. They x-ray you and then take most of it out. They then get you to expel the rest. This last bit is the most useful. The action of using the muscles pushes the enema where the fistula is if any. They x-ray you again to show if that has happened. That might help them find the fistual if it still not clear.
Meanwhile I visited St Marks for the first time. This was just for tests - endo anal ultrasound and physiology tests. I did learn that my fistula has moved - it now in the anal canal and not in the rectum where it was before - how can this have happened? I am confused and dreading now what the news will be. The only slight glimmer of hope is that it does mean that the rectum bit must have healed ...
For Kitty who asked (I think) I have had 3 vaginal flap (layered) repairs and one from the rectum side. Second two of these repairs was done with a stoma in place.
I think of you all even though I don't post so much these days. I hope there will be some more good news storys soon. Flower - hope you take care and look after yourself.
Bea
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Penny
I saw this on St Marks website - I expect you have tried all these things but in case it helps. (you might need to copy it into your browser)
Bea
***edited by moderator*** web addresses not allowed
I saw this on St Marks website - I expect you have tried all these things but in case it helps. (you might need to copy it into your browser)
Bea
***edited by moderator*** web addresses not allowed
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Thank you Bea for thinking of me. There are a lot of good reminders there and I plan to reread and take notes. I find even the kid's flushable wipes I use can be too much sometimes. I like the water spray idea. I wouldn't have that available outside of home but just leaving home for the day feels much better if you're not contending with an itch or irritation. Again, many thanks.
Penny
Penny
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Bea, I did get to read the info once through before it was taken off. Can you share some key words that might help me get back there? I wish I had copied it down.
Penny
Penny
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Hi Penny
Didn't realise I couldn't post a link ... The leaflet is called "Advice on Skin Care for people with Bowel Problems". If you type that in to Google and add St Mark's it should come up OK. There also seems to the same info produced by something called TrustPlus which that search brings up.
If that doesn't work search for St Mark's Hospital, Northwick Park UK. You will get their website - look for patient information menu across top and then select patient infomation leaflets. You might want to do this anyway as there are loads of them and I found some quite interesting - like one on bowel function - very general but interesting. Good luck - there might be some tips which help.
Bea
Didn't realise I couldn't post a link ... The leaflet is called "Advice on Skin Care for people with Bowel Problems". If you type that in to Google and add St Mark's it should come up OK. There also seems to the same info produced by something called TrustPlus which that search brings up.
If that doesn't work search for St Mark's Hospital, Northwick Park UK. You will get their website - look for patient information menu across top and then select patient infomation leaflets. You might want to do this anyway as there are loads of them and I found some quite interesting - like one on bowel function - very general but interesting. Good luck - there might be some tips which help.
Bea
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Hi Ladies
I've been out of the loop for about a month. I needed some regrouping time and some time to reevaluate where I want to focus my life. I've decided it will not be on this fistula, hence my absence from the site. I'm trying a new approach to dealing with the hole, and have been feeling mentally better for the last week as a result. That said, it just broke my heart and made me cry to read your situations, Flower and Bea. I give you both so much credit for your strength and perseverance through all this and hope and pray for a positive result for you both. For all of us, really.
Tisha- You asked a while back about my doctor. I went to Dr. Jennifer Ayscue (colorectal surgeon) at the Washington Hospital Center. She was very nice, but you should know that my repair didn't work. She was surprised about this and said that it hasn't happened to her before (or at least not much). Someone from another site recommended Fairfax Colon and Rectal Surgery, which is where I plan to go for a second opinion if I ever decide to get this thing fixed again. That said, I would still consider going back to Ayscue if I decided to get another surgery. My OB also recommended s Dr. Stein in Silver Spring, but she wasn't covered by my plan. Hope this helps.
CJ- The dilators seem to be working. I got mine on the website. I'm up to the third biggest now, so one more to go before I attempt my husband again. I usually feel a little pain when I'm moving up a size, but it subsides by the next time I try it. How is it going for you?
Have to go put the little one down for a nap, but hope you are all doing well. Keep your chins up and know you're in my prayers.
All the best,
RLWMom
***edited by moderator*** web addresses not allowed
I've been out of the loop for about a month. I needed some regrouping time and some time to reevaluate where I want to focus my life. I've decided it will not be on this fistula, hence my absence from the site. I'm trying a new approach to dealing with the hole, and have been feeling mentally better for the last week as a result. That said, it just broke my heart and made me cry to read your situations, Flower and Bea. I give you both so much credit for your strength and perseverance through all this and hope and pray for a positive result for you both. For all of us, really.
Tisha- You asked a while back about my doctor. I went to Dr. Jennifer Ayscue (colorectal surgeon) at the Washington Hospital Center. She was very nice, but you should know that my repair didn't work. She was surprised about this and said that it hasn't happened to her before (or at least not much). Someone from another site recommended Fairfax Colon and Rectal Surgery, which is where I plan to go for a second opinion if I ever decide to get this thing fixed again. That said, I would still consider going back to Ayscue if I decided to get another surgery. My OB also recommended s Dr. Stein in Silver Spring, but she wasn't covered by my plan. Hope this helps.
CJ- The dilators seem to be working. I got mine on the website. I'm up to the third biggest now, so one more to go before I attempt my husband again. I usually feel a little pain when I'm moving up a size, but it subsides by the next time I try it. How is it going for you?
Have to go put the little one down for a nap, but hope you are all doing well. Keep your chins up and know you're in my prayers.
All the best,
RLWMom
***edited by moderator*** web addresses not allowed
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RLWmom,
It is so good to hear from you! I have wondered how you are doing. I am exactly where you are at with the dilators. One more to go! I have not wanted to move to the last one just yet. I do usually feel a little discomfort when I put the dilator in, but after I leave it in for awhile it feels better and goes all the way in fine.
Hopefully soon everything will be okay! Please keep me posted on your progress. I am glad to be able to "talk" to someone else that has the same problems as me! How are things with your fistula? Do you still pass stool or has it gotten better?
You are exactly right that we can't focus on the fistula. We have to move on with our lives. When I was at the hospital checking in for my surgery, the woman checking me in asked me why I was having my fistula fixed. I thought this was very odd of her to ask me. I told her why and then I asked her why she wanted to know and if she had one. She told me that she did, but that she also has a brain tumour and other health issues and that the fistula is least of her worries. I have been trying to remind myself of what she said. Yes, I still have mine and the symptoms are minimal for the most part and it does bother me that I still have it, BUT it could always be worse! We live in an imperfect world! We all have problems here on this Earth. I just pray that one day I will get this fixed, or I can somehow deal with it and that it will remain minimal if I never attempt surgery again.
Thanks again for your post and please keep in touch!
CJ
It is so good to hear from you! I have wondered how you are doing. I am exactly where you are at with the dilators. One more to go! I have not wanted to move to the last one just yet. I do usually feel a little discomfort when I put the dilator in, but after I leave it in for awhile it feels better and goes all the way in fine.
Hopefully soon everything will be okay! Please keep me posted on your progress. I am glad to be able to "talk" to someone else that has the same problems as me! How are things with your fistula? Do you still pass stool or has it gotten better?
You are exactly right that we can't focus on the fistula. We have to move on with our lives. When I was at the hospital checking in for my surgery, the woman checking me in asked me why I was having my fistula fixed. I thought this was very odd of her to ask me. I told her why and then I asked her why she wanted to know and if she had one. She told me that she did, but that she also has a brain tumour and other health issues and that the fistula is least of her worries. I have been trying to remind myself of what she said. Yes, I still have mine and the symptoms are minimal for the most part and it does bother me that I still have it, BUT it could always be worse! We live in an imperfect world! We all have problems here on this Earth. I just pray that one day I will get this fixed, or I can somehow deal with it and that it will remain minimal if I never attempt surgery again.
Thanks again for your post and please keep in touch!
CJ
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CJ-
No it doesn't really bother me-but I am still nervous-mine is low, so I am slightly fearful that the friction could cause issues... but it hasn't yet. I use lubrication and am cautious... Things seem to be ok, not having any really major issues, which makes me feel better. I feel like I am really getting back to my life...and you know what your post is right, there are so many other worse issues that people have to deal with. I hope this helps!!!
Ladies-be good, keep the faith!
Beegirl
No it doesn't really bother me-but I am still nervous-mine is low, so I am slightly fearful that the friction could cause issues... but it hasn't yet. I use lubrication and am cautious... Things seem to be ok, not having any really major issues, which makes me feel better. I feel like I am really getting back to my life...and you know what your post is right, there are so many other worse issues that people have to deal with. I hope this helps!!!
Ladies-be good, keep the faith!
Beegirl
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Hello Everyone....well I am 100 % healed from the reversal...so back to shovelling, and all the fun stuff !
However both of my docs are mystified as to how the stool is finding its way into the vag.....neither one can locate the hole, if there is one they say.....I give up, they now think its transfer from when I have B.M.s.....I don't think so but.....I am so over this, that I agree with you CJ...your post is dead on..there are so many others out there worse off and there are those out there with what we see as perfect lives and health and you know what ? they too have issues.
Mine seems to be low also beegirl and if I can deal with the small inconviences than I will. I worry too that sex will make the situation worse. I am back to work, planning my vaca, walking my dogs, pretty much trying to get on with my life, just watching my diet closely to minimize the diarrhea and frequency of it too. I guess the gas is what irks me the most....can't control it, but if I catch it, I can release it thru the rectum and I feel normal for that micro-second !! Yay for me....Beegirl, I have to think that there is still some healing that needs to happen even after the reversals.
My CRS wants to see me in a few months, but I am not sure if I will go back or not....The docs tell me that I have no pain, no fever, no infections, therefore no fistula....as those are all symptoms of fistulas....huh? I am so confused right now thus is why I am not doing anything for awhile....just living and enjoying my life as I can.
Bea....hang in there and get yourself to the best place where you can live with this.
Flower
However both of my docs are mystified as to how the stool is finding its way into the vag.....neither one can locate the hole, if there is one they say.....I give up, they now think its transfer from when I have B.M.s.....I don't think so but.....I am so over this, that I agree with you CJ...your post is dead on..there are so many others out there worse off and there are those out there with what we see as perfect lives and health and you know what ? they too have issues.
Mine seems to be low also beegirl and if I can deal with the small inconviences than I will. I worry too that sex will make the situation worse. I am back to work, planning my vaca, walking my dogs, pretty much trying to get on with my life, just watching my diet closely to minimize the diarrhea and frequency of it too. I guess the gas is what irks me the most....can't control it, but if I catch it, I can release it thru the rectum and I feel normal for that micro-second !! Yay for me....Beegirl, I have to think that there is still some healing that needs to happen even after the reversals.
My CRS wants to see me in a few months, but I am not sure if I will go back or not....The docs tell me that I have no pain, no fever, no infections, therefore no fistula....as those are all symptoms of fistulas....huh? I am so confused right now thus is why I am not doing anything for awhile....just living and enjoying my life as I can.
Bea....hang in there and get yourself to the best place where you can live with this.
Flower
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Hello Ladies,
You sound good Flower! Keep it up and encourage me! I am feeling a little down.
i have been suffering with anxiety lately over some job related issues and when I get like this I feel like I could have a panic attack and then I feel like getting diarrhea which stresses me out more because of the fistula. It's been really bad lately and I have had softer stools and have noticed some stool like specs coming through vaginally. I had been fine for months passing no stool and now that I have been having anxiety issues it's making me looser. Then when i see the specs I am reminded again of my fistula. Today, i thought I was going to have a Bm and it went away and when I went to the bathroom later I was leaking stool vaginally and through the rectum. UGH! It seemed like there was alot more vaginally then what normally happens when I have passed stool or specs. I felt terrible and was worried maybe the fistula was getting bigger.
Bee when you sometimes pass stool how much is it? Is it mainly just specs or is it sometimes a little more? My email might not make sense.... but basically i think becuase I didn't go and try to have a BM it just leaked out because I was kind of holding it in and then that's why it leaked vaginally. I was just shocked that it seemed more than just specs and it scared me! I hate this!
Talk soon,
CJ
You sound good Flower! Keep it up and encourage me! I am feeling a little down.
i have been suffering with anxiety lately over some job related issues and when I get like this I feel like I could have a panic attack and then I feel like getting diarrhea which stresses me out more because of the fistula. It's been really bad lately and I have had softer stools and have noticed some stool like specs coming through vaginally. I had been fine for months passing no stool and now that I have been having anxiety issues it's making me looser. Then when i see the specs I am reminded again of my fistula. Today, i thought I was going to have a Bm and it went away and when I went to the bathroom later I was leaking stool vaginally and through the rectum. UGH! It seemed like there was alot more vaginally then what normally happens when I have passed stool or specs. I felt terrible and was worried maybe the fistula was getting bigger.
Bee when you sometimes pass stool how much is it? Is it mainly just specs or is it sometimes a little more? My email might not make sense.... but basically i think becuase I didn't go and try to have a BM it just leaked out because I was kind of holding it in and then that's why it leaked vaginally. I was just shocked that it seemed more than just specs and it scared me! I hate this!
Talk soon,
CJ
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Hi CJ,
CJ, I am so sorry you're having to deal with what seems like things getting worse instead of better. I wonder if dealing with the anxiety would help as it seems to be the start of a chain reaction when it comes to diahrea and then spec's etc. I went through something very similar when I first had my fistula and then ileostomy. When things start feeling hopeless you can't help but feel anxious and panicky. I had difficulty eating and sleeping, too. I found that talking to someone and medication for anxiety/depression really helped. I think flower mentioned that she's taking antianxiety meds of some kind to help with her diahrea, too. It won't necessarily help with the fistula but it certainly will make you feel better while you try to decide what to do next. Good luck to you and hang in there.
Penny
CJ, I am so sorry you're having to deal with what seems like things getting worse instead of better. I wonder if dealing with the anxiety would help as it seems to be the start of a chain reaction when it comes to diahrea and then spec's etc. I went through something very similar when I first had my fistula and then ileostomy. When things start feeling hopeless you can't help but feel anxious and panicky. I had difficulty eating and sleeping, too. I found that talking to someone and medication for anxiety/depression really helped. I think flower mentioned that she's taking antianxiety meds of some kind to help with her diahrea, too. It won't necessarily help with the fistula but it certainly will make you feel better while you try to decide what to do next. Good luck to you and hang in there.
Penny
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Hey CJ...yes nerves and aniexty will make for diarrhea and looser stools and more leakage thru the fistula...that is my main problem too. I have Lorazepam (sp) to take for the attacks, but thankfully haven't taken them in awhile...I drink peppermint teas and that soothes me. When I have leakage it is flecks and when I pass gas it's just like a mucus that leaks thru. I can dab that out easy enough. But...if I have an all out diarrhea b.m....more comes thru. I watch my diet, eat lots of liquid absorbing foods...take immodium if need be and try not to supress the urge too much to have the b.m. I am thankful that my spchinters are working now, that helps so much, that is MY bright light in all of this so I try to focus on that.
Not stressing is a hard thing, but try try not to let things get to you...everything is do overable ( is that even a word?) everything can be fixed or replaced, I survived a 10 hour day at work with just one officer yesterday and I did quite well....when 5 phones started ringing all at once, I just said, oh well, doing what I can! For every pretty decent day I have, I am thankful, I do have those rotten days and I am angry and disgusted and depressed too. I wonder if the hole will get bigger too? Will having sex make it bigger? anyone have any thoughts on this? Will healing still occur even without surgery and the ostomy? Who do I ask since both my docs are convinced I don't have a rvf anymore...? Take it easy Ladies and smile at the sun when she shines on you !!
Flower
Not stressing is a hard thing, but try try not to let things get to you...everything is do overable ( is that even a word?) everything can be fixed or replaced, I survived a 10 hour day at work with just one officer yesterday and I did quite well....when 5 phones started ringing all at once, I just said, oh well, doing what I can! For every pretty decent day I have, I am thankful, I do have those rotten days and I am angry and disgusted and depressed too. I wonder if the hole will get bigger too? Will having sex make it bigger? anyone have any thoughts on this? Will healing still occur even without surgery and the ostomy? Who do I ask since both my docs are convinced I don't have a rvf anymore...? Take it easy Ladies and smile at the sun when she shines on you !!
Flower
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Penny and Flower,
Thanks for your encouragement! I am trying not to get down about things since that makes me get diarhea. I do see a counsler and I might talk to her about getting medication for these panic attacks. Today I had a softer bm and it was fine. Nothing went through! I really think that I had a problem the other day because I was sort of holding it in and that's why there was leakage. I just need to get it out when I need to go so that it bypasses the hole I guess! UGH!! So glad I am not the only one with this issue!
Hope you all have a good weekend. Please stay in touch!
CJ
Thanks for your encouragement! I am trying not to get down about things since that makes me get diarhea. I do see a counsler and I might talk to her about getting medication for these panic attacks. Today I had a softer bm and it was fine. Nothing went through! I really think that I had a problem the other day because I was sort of holding it in and that's why there was leakage. I just need to get it out when I need to go so that it bypasses the hole I guess! UGH!! So glad I am not the only one with this issue!
Hope you all have a good weekend. Please stay in touch!
CJ
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Hi Everyone,
I just found this post - it is wonderful. Believe it or not, I have had a fistula for 19 years. I have had 3 surgeries. My fistula is at its smallest now, but I still pass gas and stool thru my vagina. I am now 48, and wondering if technology has changed. It does not sound like it. I'm afraid to get it addressed, for feat that it will get worse. i wish you all luck,and it helps knowing that I am not alone.
I just found this post - it is wonderful. Believe it or not, I have had a fistula for 19 years. I have had 3 surgeries. My fistula is at its smallest now, but I still pass gas and stool thru my vagina. I am now 48, and wondering if technology has changed. It does not sound like it. I'm afraid to get it addressed, for feat that it will get worse. i wish you all luck,and it helps knowing that I am not alone.
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