Couldn't find what you looking for?

TRY OUR SEARCH!

Pergamom,

First, I want to say again eveyone is so different... Fistulas are hard to heal sometimes...consider the fact that that area never rests... and is dirty.

I did have a flap surgery (rectal) repair 8 mos. after my daughter's birth. It failed about a week later, and then the hole did get bigger...pinsize to fit a finger through it size...my fistula was low. This does not happen to everyone!!! It is just what happened to me.

I think the area is just dificult to repair, I switched Dr. because I met another women through a friend who had a fistula...and had success with the Dr. I am using now, after several failed attempts. So I went with him and the ileostomy, for me, seemed logical. The area needs to heal and there isn't a tom of skin down there, so I juat wanted to do what would be the best for me...living how I was, was very, very difficult...

So a few weeks ago, I got my ileo. it has been tough....but, I am ok...whatever, it is a small part of my life. I still can not life (6 weeks, at least) But in the larger sense, I am not going to let how I get rid of waste rule who I am or what I am going to do... Live is too short and living with an ostomy is far from the end of the world...I am less that a month out of surgery, I am back at work (light work), I am writing, I hang out with my friends and family, go places, etc... I love life! It is a lifestyle change, but it is like anything else, you can sit around and dwell on it or just get on with your day.

I do have bad days, you can read my posts and see. I am lexpro for my blues. It helps. I have had days I felt like "why did this happen to me?" all that stuff, but why does anything happen to anyone? I am not dying...and the prognosis could be worse...

I can't tell you what is right for you. I know I was in your shoes and it was hard to make the decision that I made. I did not like the initial outcome, but hopefully this will work. I know you feel horrible, but it will get better. Because what choice do you have?

For me getting on with my life helps. I have projects I do...with writing...my career...my baby...she said "bath" tonight...how cute? I play pool... I read...etc. to help me get my mind of me...Seriously try ordering Susan Johnson's book. It helped.

Have you thought about anti-depressants? Have you talked to your MD about stress relieve? ETC.... DO!!! It really helped me to admit I needed a little support.

DO you have health insurance? Call your plan and see if they can help you locate a Dr.

Do you live by a big hospital? Call and ask questions....

As far as constipation, don't strain the area...all your doctors will probablly say that...but try to stay regular.... constipation is not good! Nor is the opposite end of the spectrum, if you have a fistula.

YOU CAN DO THIS!!! YOU ARE NOT ALONE... try to put it into perspective, when I finally did I felt better.

ASK ANYTHING YOU WANT! I would be happy to answer, but remember that I am just one situation. Many women get fixed and never come back to this board... I could not lift for 6 weeks...but after mine failed, I did...nothing heavy. Same thing now, and I am not liftting, at all!!!!!!!!!!!!!!! but no bed rest. My first surgery was out patient- 23 hrs.

I will check back later.... Best, B

Penny-just wanted to say hello. I made it another day...I love this new waterproof seal...I feel so much more confident at work. Just wanted to say that... I hope you are doing well and not worrying too much about surgery! Be well, B

Loading...

Perga-excuse my spelling errors, etc..I post, then read them over...duh, I hate when I do that....tom being ton, etc, and other stupid punctuation mistakes....blah, I just spill thought, too quick, like a fistula. ha. B

Loading...

Hi, B,

oh i understood everything you inputted, oh forget about the spelling mistakes, we have fistula that's just the last concern we have.

i really can't thank you enough for your reply, thank you!!!
i think i'm willing to have it fixed to undergo surgery, but same as i don't believe in lottery, i'm not a risttaker, so i don't know how i can handle all these if i became unlucky again, i mean, having fistula after child birth is being extremely unlucky, so the chances of me being just unlucky are pretty high. i know i should look at the bright side of stuff.

i'm covered by my hubby's insurance, and again i'm new here, so if my hubby doesn't help me i can't find my way to anything, and he sometimes doesn't help me until i push him to. i mean, he could have searched for things about fistula, like how to have it fixed, or contact insurance company to consult in this regard... plenty of things he could have done, but he just wouldn't do. i don't know whether it's me being overdemanding or ... i hate to be so pushy, but... whenever he saw me being bothered by the damn thing, he'll just say we'll get it fixed. and then that's it, finito, no more word or action!

i did have some melting-down moments, like once we had lunch together, i was angry at what he said, i just threw everything on the table onto the ground. so when i mentioned your suggestion about the anti-depressant, my husband couldn't agree more on that. but the problem is that i'm still nursing my baby girl, so i wanna wait until i'm done breastfeeding.

mine is pretty low too, like when i use my finger to push a little bit again the perineum i can feel the fistula 'tube' beneath it, so low is it.

if the flap surgery worked out, then we don't have to undergo any repair surgery any more? i mean, the flap thing only blocked one end of the fistula, the fistula is still there, don't we need to have tbe whole fistula 'tube' sewed up after the flap surgery?

yaa, i think my fistula had orginally only one opening at the vagina end, but then because of the constipation thing, because i was being too stupid, i pushed too hard while having bowel movement, cause i thought at that time, i couldn't do more damage down there 3 months after child birth however much i pushed, i just wound up finding poo there one day.


beegirl1 wrote:

Perga-excuse my spelling errors, etc..I post, then read them over...duh, I hate when I do that....tom being ton, etc, and other stupid punctuation mistakes....blah, I just spill thought, too quick, like a fistula. ha. B

Loading...

Pergamom-can you contact his insurance-you should have your own card? If you do call the number on the card!!! I understand he's nonchalance because my husband would have been the same if I had to depend on him to get this done. It is hard t understand if you are not going through the situation.

The Dr. can explain the surgery better than me...but with a flap, they cut the fistula tract (deep skin) then sew a flap of skin over it.... so, when you think about it, the fistula would get larger....but again, this hasn't happened to most of the women I have talked with.

Have a great weekend and post if u have any questions.

Best, B

Loading...

hi,B,

i'll contact the insurance after the doc's visit in 2 weeks.
i just want him to participate more in this whole issue, cause i want to feel being taken good care of.

thank you for the explanation. i really appreciate it.
and i'll keep you posted after the doc's visit on 21st.

thank you!

Guest wrote:

Pergamom-can you contact his insurance-you should have your own card? If you do call the number on the card!!! I understand he's nonchalance because my husband would have been the same if I had to depend on him to get this done. It is hard t understand if you are not going through the situation.

The Dr. can explain the surgery better than me...but with a flap, they cut the fistula tract (deep skin) then sew a flap of skin over it.... so, when you think about it, the fistula would get larger....but again, this hasn't happened to most of the women I have talked with.

Have a great weekend and post if u have any questions.

Best, B

Loading...

Perga,

You sound so much better. That's great!!!! I really hope you get the care you deserve. Make a list of questions and bring them...I always do that now, someone suggested it to me....

Be so well and take care of yourself and your little one.

B

Loading...

hi, B,

could you pls tell me the name and how i can reach the colorectal surgeon who treats you right now? a friend of mine lives in your area, she mentioned that i can live at her place if i couldn't find any colorectal surgeon here and decided to have it fixed in your area. cause as many mentioned here the first surgery is vital.

thank you again.

wish you all the best.

Loading...

Perg-
NY? Albany Medical? Is that the area that you are talking about....
B

Loading...

Hi B,
Just wanted to get back to you about your new confidence with your seal. sounds like it's working well. I'm impressed. My wound care nurse had very limited knowledge of what might help with my leaks. At first it was "What are YOU doing differently" to cause this to happen. Then she began looking at my diet. She had nothing but the basics to offer and this was at the biggest hospital in Western Mass. What I learned from there was pretty much at that website I mentioned. I'm glad you got what you needed when you needed it.

Pergamom, I wish you continued progress on getting to where you'll feel confident in your care and hope for full recovery. Hopefully, good things will start happening after your doctor visit.
Penny

Loading...

hi, B,

my friend is in NY. the name of the doctor?
thank you!
Guest wrote:

Perg-
NY? Albany Medical? Is that the area that you are talking about....
B

Loading...

hi, Penny,

thank you!
and i just wish that less and less women will suffer from what we are suffering now.
good luck on 26th, and we are waiting for your good news.

Penny70 wrote:

Hi B,
Just wanted to get back to you about your new confidence with your seal. sounds like it's working well. I'm impressed. My wound care nurse had very limited knowledge of what might help with my leaks. At first it was "What are YOU doing differently" to cause this to happen. Then she began looking at my diet. She had nothing but the basics to offer and this was at the biggest hospital in Western Mass. What I learned from there was pretty much at that website I mentioned. I'm glad you got what you needed when you needed it.

Pergamom, I wish you continued progress on getting to where you'll feel confident in your care and hope for full recovery. Hopefully, good things will start happening after your doctor visit.
Penny

Loading...

Perga- Dr. Edward Lee.

Hope life is treating you well.

B

Loading...

Hello everyone,
Possibly positive news to share. I went for my preop appointment yesterday and the MD couldn't find the fistula. I'm hoping that is a good thing and it's not that it's there and he can't find it. Either way there's a possibility that it's gone and I could have a reversal next instead of another surgery and another sphincteroplasty. I almost hate to think about it because now it would be just such a big disappointment if it isn't true. There is something in my rectum the MD couldn't ID so he wants me to see my colorectal MD within a week before my scheduled surgery to see what it is and I'm thinking possibly have it removed. Trying to be hopeful that it's nothing outrageous and can just be removed. I would be thrilled. I told my husband there something positive about having to wait for 4 months to see an MD, you end up curing yourself!

I will let you all know if indeed I'm moving forward quickly. On the 26th I'll have the procedure to determine whether or not the fistula is there. If not I get sent home. If they do find it he'll do the surgery we had planned.

How are you doing B? It sounds like you're in a good place with your ostomy. Having one is difficult but it's got to be good for healing. When do you see your MD next?

Pergamom,
Are you feeling better about things? Hope so. Would you take your daughter with you when you move? How is she doing? I can't remember how old she is.
Take care. I'll keep you posted!!

Loading...

Penny-That is so great...my fingers are crossed for you...I am doing good...you are so right that this help heal...I go back to the Dr. on Monday... I will keep you posted....

Perga-hope all is well. b

Loading...

Hi all,
I just want to thank you for your posts which have been supportive (because who else do you meet with RVFs?) but also a bit dismaying because I can't believe you are also having multiple procedures. I wonder if mine will ever heal...

I've had mine for nearly 4 years, 3 repairs - the third with a colostomy. I'm in the UK so I'm also dealing with the NHS - good in some ways but slow at first. It took 8 months to get anyone to believe me. I had a bartolin cyst which caused it and that makes it an unusual cause so even less likely that anyone believes what you are telling them.

My repairs did not make my fistula much worse when they failed despite a very bad infection with one of them, but I almost wish I'd had the colostomy straight away because looking back I can't see how the repairs were ever going to work without one. Maybe you have to try the repair without a stoma before you can face the colostomy. I had to wait 2 and half years for my first repair and in that time my fistula continued to grow in size - quite a lot, from barely visible to pencil size at the front and 'quite big' in the rectum according to my consultant. My fistula doesn't come out in the vagina but between the vagina and the perineum (sp?).

I hope the person who is having the procedure on the 26th gets good news. I think we all need it to be good news as hope for the rest of us. I had an x ray with a barium enaema on Monday and the fistula is still there. I just hope they think it has got smaller at least.

Very best wishes to all of you. And thanks again for all your posts. A great help. I've never heard from a fellow sufferer of an RVF before. (I have met someone with Crohns who has other fistulas but it is the difficulty in healing the RVF which is the nightmare - if only a simple operation would heal it).

Bea

Loading...