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fistula concerns :( fistula concerns :(

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Unread 07-28-2003, 07:07 AM
fistula concerns :(

Hi Shelly,

So glad you had a nice weekend. You need a good mental attitude going into this surgery as it will help with the healing. When I had my fistula repairs they were done both abdominally & vaginally due to location with 2 surgeons. My expected stay was 4-7 days. I was out in 4 both times. I was hooked up to a morphing pump but disconnected within 24 hours as I would stop using it. As soon as the pump was gone they weaned me off IV antibiotics & from there things went quickly. It will depend on how you tolerate food & both times as soon as I had a bm I could go home or at least the next morning. I always have told my dr's when I was ready to go home. They don't like to send you home too soon. I always got out of bed the day after surgery & took short walks in the hallway. Not far & with help. If you don't get up & move then you risk blood clots or worse pneumonia. The first time out of bed is difficult, especially with the incision but you will feel better when you are up. At first I had both the supra cathater & urethral cathater. Urethral was removed second day post op. I always took care of myself with help from my dh as far as bathing, walking etc. He knows better then a stranger plus I didn't like hospital beds. However the nurses will help with all that & take really good care of you. Home health was offered but I didn't need them until urostomy surgery. I turned them down but shouldn't have. I have never had any packing because most of my surgery was done abdominally. Last surgery I had both a J-pratt & a hemovac pump to pump out excess fluid so don't be surprised if you should have one or the other. They don't hurt when removed (normally). IVP tests & cystograms were hard for me because my bladder was so sore & tender. I have no veins left for IVP. I have lost count of how many I have had but am not scheduled for another until October. I am seeing a therapist to prepare me & will probably take something prior to relax me as they may have to mainline me. Right now I have loop-a-grams which are a piece of cake after the first time. I believe Renee & Louise had the surgery abdominally also & will probably be along to share there story. It is really rough the first 2 weeks but then things will start to improve. Stock up on broths & soft foods along with cranberry juice & ginger ale just in case you are nauseaus when you come home. Percocets mess up my stomach so I have always taken Darvocets for pain. Also apples or apple juice will help soften your stools although your dr will prescribe something. I took Milk of Magnesia once a day for a few days but didn't have any problem in that area. Have to go, Good Luck.

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Unread 07-28-2003, 09:54 AM
fistula concerns :(

Shelly....I'm a fistula sister too. Sorry you joined "our" group but hey we are here to help you get through this. I wasn't fortunate to have found this site while I was going through my nightmare....

I was lucky that I had/have a very good uro. He wanted to try a vaginal fix but I was scared of that because he couldn't guarentee me a successful fix because the fistula was up high and big....I wanted to make sure I got fixed the first time so I went with abdominal surgery again.

I was in the hospital 4 days. Came out with two cath's. One is the transvaginal (foley) and the other is suprapubic (SP).

It took a good 6 weeks to have not so much pain and was not allowed to do anything but take slow walks. Basically I listened to my it STILL tells me to slow down.

I was cath'd 10 days after my TAH and remained cath'd for nearly 5 months. Glad that's behind will be behind you too. Just take each day as it comes or hour if need be. It's okay to cry. YOU have been through a LOT.

We are here for you. WE KNOW what your're going through so ask ANY questions. Please know you are in my thoughts for a sucessful repair.

Hang in there.

Unread 07-28-2003, 07:43 PM
fistula concerns :(


Hi! I gues I am the "old-timer" here, I had my fistula repaired abdominally and vaginally on Jan 15th. I am living proof that you can survive a fistula and go on with your life. I have been back to work for almost five months, about 60 hours a week and I feel better than I did before my hysterectomy. Don't get me wrong, I am still not 100% where I want to be, but every day gets better, really.
All the things you've read hear are true from the individual's perspective, but everyone is different and handles pain and healing in their own way. Just listen to your doctor's, and your body, and take every day one at a time.
It's better to not dwell on what might happen, be positive and tell yourself YOU WILL MAKE IT THROUGH!
Ask whatever questions you want, come vent when you need to, and cry if you need to.
Lots of hugs to you!
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Unread 07-29-2003, 10:16 AM
fistula concerns :(

Hey Louise,

Glad to hear your're doing so well. Wish I could say the same for me. As you said though each person is different, and each surgery is different. My uro went through abdominally and had to completely open my bladder because the fistula was posterior.
I am better most definately but not 100% either.

Good hearing from an "old timer"

Unread 07-29-2003, 04:08 PM
fistula concerns :(

I want to thank all of you who have responded to my post...I do appreciate all the information. I'm sorry that all of you have gone through this but I'm happy I've found a place where I can get support from experienced people. Mentally, I'm doing better and looking forward to my appointment next Monday so I can find out what the plan is. I have had so many offers from people to help me out after my surgery. I consider myself truly blessed.

A funny little story here.....I was at the beach with my boyfriend and a young lady with a wet bottom walked past us and my boyfriend looked at me and said "look she has a fistula too". She apprently put her shorts on over a wet swim suit. Got a chuckle out of me.

Thanks again for all your does make a difference!!!

Unread 07-29-2003, 05:17 PM
fistula concerns :(


We are so happy we can help- there is nothing better than being able to think I really eased someone's pain...glad you are doing I said everyday is better and a brand new beginning...when I was done with surgery I considered it the beginning of a great new life...and it has been....
Unread 07-31-2003, 03:53 PM
fistula concerns :(

Ok sisters...need to vent here. My cysto/exploratory is schedued for this coming Monday 8/4. I got a call this afternoon from the doc. office that she's not covered by my insurance. She's listed in my HMO booklet printed this past Spring and was told she was covered but it has something to do with her Tax the insurance system she's listed under 2 active and one inactive. I got the call after I got home from work and the lady from her office said there was another doc in the practice who is covered. I informed her that I didn't want to have surgery by a doc I've never laid eyes nor know anything about. So basically I have one day (tomorrow) to get this cleared up or I'm out a doc. and will be out doc shopping again. (To be honest I don't know how I had the initial visit and hope I don't have to pay out of pocket for that one).

This has really been a day from hell....I handle the finances for a school district and have two auditors in all day basically questioning everything I've done for the last year. Haven't slept well for the last 2 nights and it seems my leaking is getting worse....on top of that the hot flashes have been OUT OF CONTROL!!!! Then the phone call from the docs office....really didn't need that.

Ok...I'm feeling a little better already..guess I just needed to vent. I'm gonna have a glass of wine, take a little nap and hopefully I'll be feeling better after that.

Thanks for listening.

Unread 07-31-2003, 04:15 PM
fistula concerns :(


Hope the wine and the vent helped. We're here to listen. It can be so frustrating. We all know. Waiting is hard. All the poking and prodding, etc.

Know you are NOT in this alone. Let us know if you have any questions. You will as time goes on.

Unread 08-01-2003, 01:11 PM
fistula concerns :(


I hope you feel better today...there is nothing better I have found than a nice glass of wine to calm yourself down...I hope you got the insurance info straigtened out- what is that 2 # thing??? Never heard of that, but I swear they make up stories as they go along to suit themselves...

Did the billing person in the URO's office try and help??? They should be doing there thing to as well as you.. I have dealt many a time with insurance issues and the key is to find someone who knows what they are doing (hopefully)...

I hope the leaking subsides for you and you get some relief over the weekend..please let me know and know I am thinking of you Stay well and have a glass of wine for me, if I was closer I would come over and have one with you- better yet I'd have a whole bottle!!!!
Unread 08-02-2003, 06:14 AM
fistula concerns :(

I'm very happy to report that the surgery is still on. I went to work yesterday and started making calls....I was like a mad woman on a mission. I went to the top at the insurance co. and had them talk to the doc's office directly....told them a sob story and I think they knew I wasn't going away so at 4:45 I finally got word that they straighten everything out.

The Uro's office also told me that they got the results back from my urine test and I have another UTI and I did't even know it. Of course they put me on an antibiotic. I know some people continue on atibiotics until they have their fistula repair....I opted to treat them as they come but apparently I don't always know when I have one. Any suggestions???

Well it's the weekend and I'm gonna make the most of it and as strange as it sounds I'm looking forward to Monday so I can find out what the next move is.

Thanks for all your support!!!!


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