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Scared with Fistula Scared with Fistula

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Unread 06-02-2003, 04:34 AM
So Sorry!!

Hi Casey

I am sooooo sorry this latest repair does not sound successful for you.. I was praying as I know you were for it to work. But the bright side is that you will have it fixed definately on 6/19 and have the summer to get a great tan- be it only on one side!! As I did sweetie- you take it ONE day at a time and you will get there..I thought my road would never end, but it did and I feel great now.

I am sending a big warm and am thinking about you.. I hope school just flies by and you can keep busy with all the end of year stuff and then you can heal. I am with you sister and do take care!!
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Unread 06-02-2003, 12:35 PM
Scared with Fistula

Thank You. You are right about the one sided tan! I have been leaking like crazy today. I called the DR. from work. He suggested that I pull the catheter out a little bit to reposition it. But not too much that it hurt. Well I tried but its not helping, but I also don't know what I'm doing! I'm trying to smile. One hour at a time...You are right that this will end and there will be a time when I am catheter free! Casey
Unread 06-02-2003, 02:28 PM
Scared with Fistula


Do feel better- be careful pulling on the cath- don't hurt yourself..thinking of you sweetie!!
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Unread 06-12-2003, 07:45 PM
Scared with Fistula


I met with my surgeon the other day. This fistula repair sounds a bit overwhelming. I go back to the castle on June 19th. Dr. expects I will be n the castle for 4-6 days. Now I thik I know what a supra catheter is. He tld me that he is going to insert a tube that will come out just above my pelvic bone, this will bemt new catheter. After three weeks I may be able to have it removed. He said six week recovery. But since this is my second major abdominal surgery within the year, I think it may take longer. What was yur experience? Hysterectomy recovery Vs. fistula repair. I'm scared but also very ready to have this thing repaire so I can stop wearing depends! I appreciate any advice or insight you may have. I finished school today with the students. I have one more day of paper work, and then I can focus on my surgery and getting better. I hope al is well with you.
love, princess Casey
Unread 06-13-2003, 05:39 AM
My thoughts......

Hi Casey

Oh sooo good to hear from you!!!! I was getting worried Dear Friend. OK- here we go with hopefully some answers and advice. First of all make TOTALLY sure you are comfortable with your URO- not only emotionally, but also that he has done Many fistula repairs(this is the MOST important thing)- also go over the stats ie: how many have you done, vaginally or abdominally, how many have re-opened (mine has never had that happen) etc. and I cannot stress the importance of this, as you have seen in other threads- they are VERY tricky to fix. If he has not done alot of them- please move on to see someone else. It took me finding my own URO when I had mine repaired. Some of the best info I got was from his staff when I called and came in for office visits- they were very willing to tell me everything about my URO- and it made all the difference for me. OK enough on that.
I had my fistula fixed vaginally- my URO does this for obviously an easier recovery and easier on the patient- if he cannot do it vaginally he will open you up right there, but I did not have that happen. I also had a spinal and was awake (sort of) for the surgery. I had an awful recovery after my hyter from the anesthesia. I would recommend this if you are like me, now totally afraid of being put back to sleep. This also makes you feel much better alot quicker. You have to be experienced to do it vaginally, so that was another plus for him. My URO specializes in women also- so you might want to check around for that- I had mine done at a large teaching hospital Yale/New Haven Hospital- that is where in larger institutions you find these specialists. I see you are in Michigan, so I am sure you can get to one if you need to. I did drive about an hour, but it didn't matter to me.
Now surgery recovery- I was in castle 2 nights and then home- I really was not to sore- just uncomfortable as they say. I had no bleeding at all, had the supra cath for 3.5 weeks- this catheter actually feels better- at least for me because it is not "hanging" out of you so to speak and irritating your urethra. So my spasms did subside- and you get used to it- no more regular cath was a blessing for me as I could not walk with it anymore after 4pm my spasms were so bad. My recovery took about 3 weeks before I felt alot better- I was very tired and just the emotional toll on me was the worst. I basically stayed at home in bed- after a few weeks I did go out, just to keep my sanity. But it also was winter time here- so I was snowed in alot with my kids. I got the big OK from my URO on 5-8-03 about 7 weeks after surgery. One thing you MUST do after this surgery is to do whatever the URO tells you to do for followup/home care. Absolutely no lifting, bending alot, straining etc.- I did not lift anything at all and still do not unless I have to. Everything you do runs thru your abdominal muscles, which is where your bladder is near, so my friend you must be careful. I still have twinges and twangs as I call them, but overall I feel great from this surgery- it is just now my HRT issues are keeping me busy.

So you WILL be fine, I hope I did not scare you- just gave you what I feel will help and my experience. If you want any more info/details let me know or you can e-mail me thru the site. I know it all seems overwhelming and it is- there were times I thought I would never get there, but I did with alot of help from everyone. also don't be shy about taking help- you will need it as you will feel like doing nothing at first. Sending a big and know I am here for ANYTHING you might need. Rest well sister and I am praying for you!!!
Unread 06-13-2003, 09:17 AM
Scared with Fistula

Hi Casey,

Glad your teaching is over and now you can focus on YOU.

I had 2 major surgeries in 3 months. I had the TAH in Nov, 2002 and the fistula repair in Feb. 2003. I had both procedures done abdominally.

I felt I had a better chance of a sucessful repair if done abdominally. Just my gutt feeling because the uro couldn't guarantee he could reach the fistula vaginally.

I had BOTH cath's after the fistula repair. The uro wanted no pressure on my bladder at all. I also woke up to a little drainage tube on the other side of my abdomin as well. That tube was taken out on day 2 or 3 in the hospital. I spent 4 days in the castle. I couldn't wait to get home. I had the foley cath removed at 2 weeks post op leaving only the supra in for another 2 weeks.

I want to be honest with you. I hated the supra cath. Especially when the stitch the uro had that was holding it into place pulled and my skin stretched and it was a constant painful tugging on a very sore tender spot. I saw the uro a few days after I was home and he clipped THAT stitch and it was sooooo much better.
The supra (in my mind) was uncomfortable because it was almost impossible to keep it taped down so it got tugged on a lot. OUCH.
I suggest for you that you wear some lose fitting dresses because it's almost impossible to wear pants around the supra hole. I was freaked when uro removed the supra....but to my surprise it didn't hurt. I have been having UTI's and get tired easily and depression is a biggy....and I lost my job....but it made me realize how important family is. My husband IS my rock. I still have crying episodes....

As far as recoverery....well as you have heard it's different for everyone. I was in EXCELLENT shape. I jogged 3-5 miles a day....I was recovering GREAT from the hyst. until the fistula occurance. It take longer to recover from a second major surgery....just think.....your muscles are healing and then BAM you get cut open again....

Let's see I'm 4 months post op from the fistula repair and I am dancing some....don't have all my strenth back and I still can't jog an entire 3 miles...I have to jog/walk. I have "other" complications too. I developed RLS (restless leg syndrome) which I feel happened because I went to being such an active person to someone who barely moved.....hence the RLS. I am being treated for that with Klonapin....<sigh>

Well I hope I haven't scared you but I really wanted to be honest.....and again EVERYONE is different with pain. I had a lot of complications from the second surgery. Another thing that happened to me was at 10 days post op from the fistula repair....I had been having heartburn and was not eating much...LOST a LOT of weight. I started vomiting (10 days post op) bile and belief me holding my abdominal incision and my supra site while vomiting bile every 20 min. was NOT FUN. Finally I was so weak and down to 101 pounds I had hubby call 911 as I knew I needed IV fluids and something to stop the wretching. I was taken to the hospital by ambulance (first time for me!) and in the castle they gave me IV fluids and meds to stop me from I'm on an ulcer medication too.....<another sigh>

Your body goes through a LOT of stress during best advice is LISTEN to your GUTT feelings....feel sorry for yourself when needed and WE ARE HERE for you. I didn't find this site until after my fistula repair....I'm so glad I found it. We woman are strong and can get through anything....because.....well because you have to.

Good luck....PLEASE email me or PM me anytime. I will be thinking of you for a sucessful repair...and it's true....take care of will need to heal completely.

Best Wishes and ((((((((((((((((((((HUGS)))))))))))))))))
Unread 06-13-2003, 10:49 AM
Scared with Fistula

Hi Casey,

I wanted to add my 2cents worth in there. Now that I have a solution I can now say that I had & have the best dr's for the job but my body due to prior complications didn't want to cooperate. Everyone's body is different & heals differently. Like Renee says listen to your body & don't beat yourself up if you don't heal as fast or faster then someone else it is OK.

Good Luck,
Unread 06-13-2003, 04:09 PM
Scared with Fistula

Dear Sisters-

Thank you so much for the gift of your wisdom. You didn't scare me at all. My DR speciaizes in women with incontinence, I do trust him but there is a part of me that feels like I won't trust another surgeon again no matter what. This is surgery #13 for me. I've decided that thirteen is going to be my lucky #. DR has to do the repair abdominally because the fistula is too high for a vaginal repair. He said I would have the supra for 3 wks., a foley for a few days and a drainage tube for a few days. I should be out of the hospital around the 23-4th. I'll e-mail as soon as I'm able. Thank you all again. Casey
Unread 06-25-2003, 05:14 PM
Home t Last!

Dear sisters- I'm finally home from the castle. The Dr repaired my fistula abdominally. It hurt like hell but he let me have a morophine drip for a few days. The Dr says the repair went well. I'll find out nest month when I have my catheter removed. I've been thinking of you all a lot. I'll write again when I can sit longer.
Unread 06-25-2003, 07:07 PM
Scared with Fistula

Hi Casey

Oh Dear Sister- glad you are home and feeling at least a little bit better- remember to rest ALOT and don't do anything to strain yourself- it can all wait until you feel better.. let us know how you are doing when you feel up to it!!!

Thinking of you sweetie!!

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