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fistula concerns :( fistula concerns :(

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Unread 07-25-2003, 04:41 AM
fistula concerns :(

I've been reading the fistula posts and have to admit..I'M SCARED!!! I had a TAH 4/22/03 and bruised my stomach the day after surgery on the IV pole which left a hip to hip bruise. Then 2 weeks after the surgery my incision got infected and came open. I had home health care coming in for about a month and about the time the incision healed I was diagnosed with a V V Fistula. Right now I have so many concerns I don't even know where to start. I'm single, live alone and with my last surgery I had to depend on so many people to help me. I had no appeitite, lost weight and got very weak. I have to go in for another cysto with a new doctor and then the date will be set to have it repaired. I told my doctor that I wanted to do whatever it took to get it fixed the first time. She said the best chance would be going through the stomach again. She said it was very technically challenging to do it vaginally. I have a lot of questions and have been reading the posts but would like to know what recovery will be like. What will my needs be and will I need someone with me all the time, and if so for how long, assuming I get cut again. I am so greatful for all the help I had with the last surgery....I have been blessed with a lot of very good caring friends. So sisters be honest what can I expect so I can prepare myself for it. Also how has this been for you mentally....lately I've been a mess. I cry very easily and that's not me. I'm guessing that a lot of that has to do with my hormones but worry that I may be starting to become depressed. I worry about everything but mostly about the please help me out here.

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Unread 07-25-2003, 05:07 AM
Welcome New Friend........


First please catch my big to you Dear Fistulasister.... I feel awful that this has happened again, but thank goodness you found us here as we WILL get you thru this...You said you have been reading alot- please do a search here under fistula and you can find a wealth of info...alot of it is just chatter, but alot will tell you what can expect and you will be prepared.. also has alot of info and you can read up there also...

You have seen a URO and are having another cytogram...are you cath'd right now?? when are they planning surgery? or are you still waiting for that? Please Shelly make sure that the URO you see has done ALOT of these repairs- as they are very tricky to fix, I cannot stress how important this is- as these fistula's have a way of going on and on sometimes...

It is OK to cry, be depressed and very upset- I can remember all of these things with me..I cried so much I made myself for 2 is a very hard issue to deal with and we have all been there and is wonderful that you have terrific friends, cause you will need them when you come home...I had a vag fix and it was successful the first time..I looked long and hard for my URO and ended up driving 45 minutes away for him at Yale/New Haven Hospital- but he was experience was to search out the best URO you can did take me about 1 week to get to him, I called all the DR's I knew for help- and my kids Pediatrician was how I found him...he deals only with women and specializes in these surgeries, so please take your time and ask so many questions...take a pad and paper with you and better than that is have someone else with you to hear what they have to say...

I am doing GREAT now, it has been 4 months and I feel good...I do still get tired and my bladder lets me know if I have done to much, but I do all the things I used to and ask away and try and rest, gather your strength and know all the fistulasisters here are wonderful...if it was not for them, during my time of surgery/recouperation I think I would have lost my know you are now in a wonderful supporting place and we will do everything we can to help you....I hope I have helped and sending a big to you Dear Friend!!! You are in my prayers and I look forward to hearing from you soon!!!
Unread 07-25-2003, 06:27 AM
fistula concerns :(


Thanks for your kind words. As far as the doctor goes...I tried getting into Johns Hopkins in Baltimore (about 2 hours away), at first I couldn't get an appointment until Sept. then they rescheduled it for Oct...just for the consultation. So I ended up getting in with a doc who specializes in female urology and bladder reconstruction in Philly...which is still about 1 1/2 hours away from my home. She's only done about 20 fistula repairs but many other types of repairs to the bladder. Personally I like her but I do wish she had more experience with fistulas. I don't want to wait to see the other doc because they may reschedule me again and if he's that busy I don't have any clue when surgery would be scheduled...I just want to get on with my life.

I had the initial cysto with a local urologists and now the doc in Philly wants to do one so she can really see whats going on. That's scheduled for next week and after that they'll schedule the repair. No, I'm not cath'd, that hasn't been an offered to me yet. I'm trying to keep an open mind and whatever the doc suggests I will do....within reason.

Mentally I'm hanging in there but at times feel very close to a meltdown....things just seem to be piling up but I'm strong so I'm sure I'll get through this with support from my friends and hystersisters.

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Unread 07-25-2003, 07:08 AM
fistula concerns :(


I do so feel for ya...

1- as for referral to John's Hopkin's(as they are the best in the country)...did your DR call them directly to try and get you in earlier??? also if you call everyday and become "friendly" with the office staff- sometimes that helps- it did for me....your Uro in Philly sounds good to- she hasn't done like 1 or 2- ask her what her success rate URO has never had one reopen after surgically fixing it..

2- why are you not cat'd- maybe you don't want to be/or the leakage is not alot... if you are uncomfortable they will do that for you- I was so happy to get cath'd I was peeing all over the place..true it is hard to get used to, but you do and I didn't leak with the cath...I drove, went out, shopped and pretty much did OK with it...

The new cystogram is for the new URO to have her own records for you- that is normal and at least it doesn't hurt....I wish I could make it better, but please know it does get better- each and everyday is a struggle and sometimes you want to just run and hide- but remember we are all here for you and come and vent ANYTIME you want...sending a warm and keep the questions coming!!!!
Unread 07-25-2003, 09:41 AM
Hi Shelly

I am so sorry that you are going through this. I just had my V V F surgery on Monday. So far everything is going good.

And I have to agree with Karen. You do want to find a Uro who has done this surgery many, many times. That was the advice that I even got from my local uro. He called for me to the Cleveland Clinic and got me right in to see the Head of Urology. I did have to wait three weeks for surgery, but knowing that I was in great hands made it worth the wait. Unfortunately, there are many women who have to have repairs more than once. So make sure you have an experienced doc on your side.

Ask any questions you can think of. We'll do our best to answer them. These group of sisters are great!

Take care and I'll be keeping you in my prayers!
Unread 07-27-2003, 04:19 AM
fistula concerns :(

Hi Shelly,

I just wanted to put in my 2 cents worth. I won't reinterate about a good dr as why would you pick a bad dr, duh? So many people told me the same thing. I wanted to ask them then why they chose a crappy dr for their hyster? It doesn't make sense. Anyway you wanted honesty so I will be honest. Many fistula women have said the test didn't hurt. Well for me they did & still do. I have a very large hole divided in 2. I also have major scar tissue on my bladder & many years of endo that was scraped off. Also when I had my cath's I was pretty much confined to home. You have had a lot happen to you so you may not bounce right back or be able to drive, shop etc. etc. etc. IT DEPENDS ON WHAT IS GOING ON IN YOUR BODY! The main advice I can give you is listen to your dr's. They know all your history & what is going on inside, noone else does. My dr's didn't want me to do anything but take short walks around my house for awhile. Yours may give you different instructions. When you read some of the fistula threads you will see that some have said oh yeah piece of cake & I'm just fine one minute then the next telling you they are having pain 6 months later. The surgery is rough. Not rough enough that you will need any special equipment such as a hospital bed or anything but you may want home health for a few days since you are single. Your friends & family will need to help you for the first couple of weeks. As for vaginally or adominally depends on the results of the tests & what your dr feels more comfortable doing. I never had the vaginal option because of the location & type of repair I needed. By the way I still have my fistula after a dozen dr's. I am the first failed fistula repair for any of my dr's so what does that tell you & they are pretty experienced. Of course I have been told that they should not have attempted to fix mine at all because it had no chance of healing. As far as I know there is only one dr in the United States that has had success with a fistula such as mine & she is in Houston, TX. I haven't searched outside the country but understand there are successful repairs like mine out there. I have a urostomy now as I needed to be dry, #1 priority with me so that I can search. I haven't given up but I need an oncologist/urologist specialist but even if they repair the fistula it doesn't mean my bladder will return to pre hyst condition. Hope I didn't scare you but you need to know that as with any surgery there are complications. Hopefully yours will be a smooth & easy repair.

Good Luck & God Bless,
Unread 07-27-2003, 04:40 AM
fistula concerns :(

Wanted to add one thing. To this day when I search for the miracle urologist the one that keeps getting recommended to me is the very first uro that did the 1st repair & assisted in the 2nd repair. I am always told of all of his miraculous surgical successes but not one mention of my failed surgery. I have an appt next week with a new dr & I keep hearing how wonderful he is but when I ask if he has failures they just look at me & say of course I am sure he has but don't know of any. It is always interesting to hear what a new dr has to say. I know that I will get referred back to the same dr as always but I wouldn't let him operate on a pet rat let alone me. I don't care how many successful fistula repairs he has had because I don't trust him. Just wanted to vent 'cause can't get to IHOP today! Thanks for listening.
Unread 07-27-2003, 07:22 AM
Checking In....

Hi Shelly

Just want to stop by and check how you are doing today??? I was thinking of you and want you to know I am around if you need anything....sending a big and hope to hear from you later....
Unread 07-28-2003, 05:01 AM
fistula concerns :(

I just wanted to report in. I had a great weekend...even spent some time at the beach...on the boardwalk...not in the water...I'm wet enough. I'm feeling a lot better mentally than when I wrote the inital post but I do tend to go back and forth on that.

I appreciate all your posts and I do want matter how bad it may seem. I do best if I know what to expect. I go next Monday for my cysto and after that I should have a plan of action. I've had a lot of support from my friends and so many have offered to help...the only problem is almost all of them work full-time but I'm sure they'll help when they can and I have no choice but to let them.

A couple of questions.....
1) If it's done through the abdomen approximately how long is the hosp. stay?

2) This may seem like a dumb question but....I read about packing after surgery....what do they pack? (I really hate the word packing).

Thanks for your support!!!

Unread 07-28-2003, 06:06 AM
fistula concerns :(


So good to hear from you!!! Glad you had a good weekend and got to the beach....even if you were wet enough to go swimming...

You just take it one day at a time and do remember, everyone does have different experiences to draw from... I prefer to always focus on the good things that have happened and learn from them and go fistula saga was difficult, but I DID come out stronger and better and try to pass that on to you the best that I can. I have always looked at the glass as half full- I have had alot of sickness in my family as of late, but being upbeat and happy is how I have to be to survive...You sound like a wonderful person and I am here for what ever you might need..

I had my fistula repaired vag- and was in the castle 2 nights..could have come home next day but decided to stay as castle was about an hour away..I think you might stay 3-4 nights but your DR can tell you to..the packing is put in the vagina after surgery for blood loss and to keep things stabilized..they removed mine the next was just uncomfortable- did not hurt me- just felt like a big fact I didn't even know I was going to have it until the Dr came in and removed it after the fact..I just thought I was sore from surgery..but when it came out what a big relief

So if you need anything else please let me know- I am here thinking, praying and knowing you will be fine very soon. What day is you appt. with URO this Monday or next??? Stay well and so happy your friends are by your side...they sound wonderful!!!

Be well sis and I will talk to you soon!!!

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