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Hi Bea,
I want to welcome you to the site. It does feel so good to have someone to share your experience with and if feels good to help others even if it's to listen and comisserate!

You have certainly been dealing with this a long time. I thought I was in this for a long time but mine came about in July of '07. I have only had one repair that failed. The rest of the time has been spent in waiting to see my next MD and preparing to leave work for 6 week. There is definitely something wrong with the health care in our countries to be having such a hard time with this.

A couple of us have ostomies, too, and that in itself is such a big change. It's been so good to talk to b, another poster, to share that experience. I hope that's going well for you. There's a good ostomy website that I referred b to that is helpful. Speaking of barium enemas. I just went to my colorectal surgeon because my other gyno surgeon saw an "unidentified object' in my rectum and wanted me to get it checked out. It was a mass of barium material, from my barium enema, almost a year ago. Ahh. It's been there for a year. Yuck. I hope things go well for you this year and you make some progress. We shouldn't need all this patience that's required of us!

Hope you're doing well B. Do things seem somewhat normal for you? I'm hoping you're feeling better also, pergamom. Talking and sharing is good. Did you have your MD appointment yet?

Penny

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Penny, I think I hit new topic when i posted. Hopefully, I will be healed by the time I get the hang of this site. Like I said in my last post, I am having a bad weekend...nervous about my appointment Monday, knowing the fistula is still there...Penny, did you have some gas coming out of your fistula when you had the ileo., and or blood leaking through your bottom during your period. Ugh, I guess I am just scared of knowing that I may have to have another operation and or have this ileo. forever. ugh.

Bea, welcome.... sorry I am a bit on the down side, but I know this too, shall pass. I have an ileo. and I noticed Penny mentioned me, as well. I am sorry you too are dealing with this... I check in pretty regularly and also use the ostomy sites-the one Penny uses and ostomyland. There are a few women on those who have dealt with rvf's and/or are dealing with them. I hope you are well, usually I am in a much better mood, just down; I think it is also because I have my period and know my surgery failed and go to the Dr. on Monday and don't want to hear the truth. Anyway, I will probably post after I hear from my Dr.

MY BEST TO ALL OF YOU!!! SORRY I AM SO DOWN TODAY! B

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Hi Penny and B,
Thank you for your kind words - I saw the new thread and posted there first. Will move to that thread from now on.
B - so sorry you are down. The check points with the Drs always remind me that things are wrong and so I get down too. The rest of the time I find easier as I concentrate on other things. Thanks for your suggestions about the other sites - i'll look there too.
Bea

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hey Bea,

Is the last repair you had holding up? B

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Hi b,
I'm so sorry you're having a bad weekend. I totally understand. When I went to my first, inept MD, I'd spend the waiting time, which was substantial, walking up and down the hall outside his office. It seems like every time we see the MD's we get not good news and it makes it hard to be hopeful.
I still have the ileo and gas isn't something I had there. And I'm afraid I haven't had my period in a long while. I graduated from college in 70 and just turned 60 this year. Ironically, it was the tear I had from my 27 year old's birth that lead me to a shincteroplasty and then the fistula. I really wish I had left it alone. Even if I have no fistula, I still have doubts about my sphincter muscles. Since the barium stuff is now gone I've had some matter come out without feeling it. Doesn't seem like a good sign. But, I think I'm being too negative. I go that way very easily so have to remember it's not the end of the world and I'm leading a fairly normal life right now.
Good luck on your appointment. I hope there are some positives. Hand in there!!

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Ladies...I wanted to write to let you know I had the surgery back late Nov 08 and I believe I am repaired. I wanted to post this because it seems that anyone that has gotten through this ok hasn't given any hope to the rest. I was in your same spots just a few weeks ago. I had major issues during labor and should have been given a c-section. I begged for one throughout my 2 day labor but they reassured me natural was the way. Anyhow..I too found out days after labor something wasn't right..went to the dr and they rushed me a few days later to a specialist. Surgery was scheduled at that appt and the surgery went well. I think I still feel a tad of gas now adn then but if that is all...FINE BY ME. I am still in pain, I can't have sex and that is where I am now. It was so hard, so humiliating and there is NOTHING online other than this string of support available to us. I wanted to say there is hope. I have read so many people having multiple surgeries, etc....but seems I have been fixed first time around. I hope everyone is dealing ok and keep positive. XX

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Hello ladies!

Well I have my surgery scheduled for Feb 2nd 09 and I'm so excited.. I can't wait for this to be over with.. atleast hopefully over with. I'm hoping this surgery will fix my issue! I'm getting the Flap Repair done. According to my surgen I will be down for 3-4 wks.. is that pretty much the timing after this type of repair? Well I'm hoping for the best.. also hoping my hubby can come home from overseas to take care of me and my 10wk old daughter!

Thank You!

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Thank you for writing Heath. We need those positive stories.

Emmasmom, good luck to you on Feb 2. I have to say when I had my flap done I was down for 24 hours. I wonder if it was the same flap, seems not. Can you describe it to us? I wish you good results and fast healing either way.
Penny

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Hi B, Penny, Heath and Emmasmom,
Hope you are all bearing up OK. You are right Heath - we need the positive stories and good to hear them. You feel trapped in some nightmare that you can't tell other people about otherwise. SO hope is good for us all.

Emmasmom - welcome - I've just joined up myself and suddenly I'm not the new girl - Hey! Good luck for your op.

B - My last repair is not 100% - the barium enaema showed that last week but I don't know if it is improved at all. The radiologist showed me the x-rays and they were so magnified I couldn't really tell the size of the 'leak'. I see the consultant on Wednesday so he will doubtless examine me and tell all. Let us know how today goes. Hugs all round.
Bea

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Hi all, I got much better news than expected! My dr. said that the repair is holding up and seems to be healing as planned. He said that the leaking I had doesn't mean failure, that it is still healing...and feels secure. Next time, he will look using the scope. So, please cross your fingers for me ladies, as I do for all of you.

Penny-How are you? Thanks for your e-mail, this weekend was tough. I am glad that I got good news. Plus I can, carefully, lift my daughter...yeah...But we're still being very careful. With the Barium "deposit" I don't think it is that odd to have a little leaking etc...especially if it is fluid...DId you ask your dr.? I hope you get really good news!!!

Bea,
How long have you had the diversion? I hope that it may heal in time. What a mess, huh? I am glad you found this site...It is so very helpful.

Perga-hope all is ok.

Emmasmom-Glad you got the date...will be thinking of you. tell us how it all goes.

Be good, B

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B,
That is brilliant news. I'm so pleased for you. Maybe this whole healing thing is just a gradual job. The thing that winds me up is the fistula recurring after the reversal - which the consultant said might happen. So I'd rather wait longer to be certain.

I've had my stoma just over 3 months so I am newbie at it really (though it feels as though I've had it longer somehow). I wonder if my consultant should have waited longer before going for the enaema test. I fully expected to have it for a few months or a year so I was shocked he suggested it so soon. Ah well such is life.....
Hope everyone else is OK.
Bea

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That is good news b. I'm glad for you. It seems we so seldom get that opportunity to go forward!! Everything intact and holding strong sounds great.

Penguin, My first Md told me 6 weeks would be all I needed. Somehow that stretched to 3 months and he wouldn't do any tests to see if it had healed. Just said the outside healed so we were going to assume the inside had too. That's when I changed doctors. I think it does take time.

Hoping we all have good news soon!

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HI Penny,
Thanks for that info. I saw my consultant again today and he said come back in 4 months. The x-ray shows some healing but it still has a hole and so it isn't finshed yet. I feel OK about it really because I'm so glad it is making progress. And havng read all the contributions on this site I realise that it will take time - so it has really helped adjust my expectation. Just got to try and live life for a bit in the meantime. I can cope OK if things seem to be going forward.
Bea

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Hey Bea, That's great news too. I do believe it takes time; but the waiting is really hard. I am getting better with the ostomy each day. SO that is good... DId he say how big the fistula was now?

Penny, hope you are well...

Be good everyone. b

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Hi All - so glad to hear others have some good news. It gives hope to anyone else that joins this site. I do have another question - I hope you'll have some insight. So we've been through the bad labor and then the additional repairs needed, etc...well now I finally (3 months after giving birth) have gotten the OK to have intercourse. We gave it a whirl and it was incredibly painful. Almost as if I am too tight for him to enter in??? Sorry if this seems to personal but I am at a loss. Dr says I need time to heal but when i look online it is possible someone can be stiched too tight or a muscle is tightened and requires a lot of pre-work before being w/ my husband? I'm starting to get really down now because I felt I was on the mend to being normal. To top this off I am heading back to work monday - first time away from my little one. Life is hard ladies!!!!
Please let me know what you think. Thanks so much and keep positive!!! XO

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