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I had a fistula too I had a fistula too

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Unread 03-14-2003, 10:06 AM
I had a fistula too

I had my repair on Jan 15th, I had only the supra after the surgery for 2 weeks. I worried every day that the leaking would start, I even wore a poise pad for about 3 weeks after the surgery, just in case!

My doctors told me that I shouldn't have to worry after the two month mark-which I just passed! My belly still swells occasionally, and if I don't drink enough, my bladder is a pain! I gained so much weight while I was catherized-I've lost all but 5-but my pants still don't fit over my swolen belly! I have to wear tunic-type shirts 'cause I swear I look like I'm pregnant! I kept both my ovaries and I notice I get PMS still, which is not fun but it's better than the hassle of taking hormones! I still get the occasional pain if I'm on my feet too much or do alot of lifting at work, but otherwise I feel pretty good.

take it easy at work-don't do too much at first!
Where are you in CA?

Hugs, Louise
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Unread 03-14-2003, 12:55 PM
I had a fistula too

Hi Renee

Hey have a great time with your hubby. Hope you feel better today.

I'm sure your repair will be fine! did you mean you will be catherized for 6 more weeks? or not- I'm sorry but sometimes I am dense lately. Did you have a cystogram to check for leaks?? or do they wait until April??

I know the waiting is the hardest part- but just take it easy- from what I have read and researched that is the most important thing- and don't yell to much that hurts too-I know that from experience

Have a great weekend

Unread 03-14-2003, 05:11 PM
I had a fistula too

Louise and all,

I'm in the bay area CA, near San Francisco. Where are you all?

It sounds like we're about the same timing. I had my fix Feb. 4th. Did you have an abdominal fix or vaginal? I was too afraid to go vaginal because having had 2 prior C-sec's and the "botched" hystectomy abdominally on Nov. 4th (which happened to be my first borns 22nd birthday and I'll never have surgery on a bday again) I knew what an abdominal recovery was like. I didn't want to face a vaginal unsucess and wake up to vaginal pain/incisions AND the abdominal cut. My urologist couldn't guarentee a fix vaginal because the fistula was up too high. I knew the recovery would be longer but I felt I had a "better" chance of the fix. He told me I may not be fixed in one surgery. Did anyone here have to have their entire bladder cut to get to the fistula to fix it? To me it sounds like the bladder cut is more "critical" than the fistula. AND that suprapubic catheter sight....what about THAT hole....will that heal? YIKES!

Okay off my panic....I actually had a good day as it turned out. I went out! Yes...I actually got into some "real" clothes. I barely fit into a pair of jeans. I guess the swelling is better today.

I think being busy is good. I am actually looking forward to gettin back to work next week. I haven't worked since Nov. 4, 2002!!!!
I'm starting on Wednesday....to break in the week short. AND I hope my NEW (yes brand new) employers will "allow" me to go home if I pee my pants!!! OR feel ill.

ANYway....I've rambled on enough....thanks for all the support. I am sooooo glad I found this website. I WISH I found you last year and thanks to whomever is doing this.

Renee<in CA>
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Unread 03-14-2003, 05:15 PM
I had a fistula too

It's me again. Hi Karen. Yes I had a cystogram last week and my bladder looked good. No I'm finally not catheterized anymore.
Had a transvaginal one since the Monday before Thanksgiving (Hysterectomy Nov. 4th) Noticed leaking about 10 days post op.

Then I had the bladder fix on Feb. 4th and had two caths. One transvaginal and one suprapubic for 2 weeks post op. Then urologist left in supra (I don't know what's so super about it) in for another 2 weeks and I was JUST set free last Wednesday....


I'm peeing.

Unread 03-14-2003, 06:33 PM
I had a fistula too

Hi Renee

So glad you are a free woman now- the sad thing is now I am actually used to the foley- and next week I get to have 2 of them(yikes)- I heard about the supra- NOT looking forward to it at all!!

Glad no leaks!!! you can now cheer me on!! Again have a great weekend to all. I am off to bed- I have to stay well!!

Unread 03-15-2003, 09:27 AM
I had a fistula too

Hi Karen,

Yes, take it easy you don't want to get sick before your surgery because that will just delay it. Is your doctor doing the surgery abdominally? Sorry if I keep asking the same questions. I will be sending you good thoughts for your surgery next week. It's almost over. How long did the doctor say you'd be in the hospital? I had to stay 3 nights and 4 days. I know exactly how you are feeling and I wish I could say something that would ease your mind. You do have a lot of support here and I know we all will be thinking of you and a successful surgery. Ask any questions as it looks as though a few of us are ahead of you a bit.
HUGS to you Karen.

Dancing last night was exhausting. Hubby & I do country line dancing and I could barely last 30 seconds of a slow song. This morning my legs feels like lead. We are going out tonight too. I will listen to my body....it isn't strong yet.

I'm sure I'll be posting later. I am so happy to have found you woman. You all know exactly how and what I've been feeling since you've or you are experiencing it too. The nightmare will end.

Take care,

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