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IVP Test for fistula IVP Test for fistula

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  #21  
Unread 07-08-2003, 08:04 PM
SP Cath question

so where does the sp cath come out of? From just above the hairline? And do you use the same catheter bags that's used with a foley - a leg bag & night bag?

And how does the SP compare to the foley? I know that the foley can cause quite a bit of discomfort if pulled down accidently.

How long were you out of work after having your surgeries?
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  #22  
Unread 07-08-2003, 10:23 PM
IVP Test for fistula

Julie,

My supra came out right below the hairline on the left (right above my pubic bone) I used the same bags but for some reason, I felt better when I used the big bag, so I used it all the time when I was home. I liked the supra better (less irritation) but some of the others preferred the foley. I tolerated it much better once I put a little neosporin around the tube after my shower. You really have to keep the supra taped good because if you don't it gets kinked up and the bladder spasms (for me) were HORRIBLE when that happened! I have three little scars on my upper thigh where I taped-I like them because they remind me that I made it through a very tough time and I'm proud of that.

I had a MUCH harder time recovering from the fistula surgery three months after my hyster. I had another abdominal incision (vertical from my belly button to BELOW my pubic bone) and it just took it's toll on me having 2 major surgeries so close together. It was a very rough 2 weeks where I honestly thought I wouldn't make it (I'm sure Terry remembers all my pm's to her!) but the point is, I made it and so will you. I was out 7 weeks after the repair and then returned to work with no restrictions. I am a dept store manager, so the first month back was very hard, I had a few set backs because I tried to rush into everything too fast. Take your time and give yourself time to heal. My drs would've given me more time off, I was just sick of sitting at home after being out so long (5 months total!).

I hope the info helps.
Louise
  #23  
Unread 07-09-2003, 06:19 AM
IVP Test for fistula

Hi Julie,

The supra will be implanted in your bladder just above your pubic bone. Keep Neosporin around the site so it doesn't crust up. After Louise gave me that tip it was better, at least better then the other. The same bags are interchangeable. I have a belly bag in my catalogue for supra cath's that looks interesting. As far as going back to work that depends on your body. I am not working even now but if my surgeries had been successful I would have been back to work in 6-8 weeks, I had a physically demanding job. But as you can see some ladies are still having problems as long as 3 or more months later so don't rush it. I am feeling good these days & am actually giving the house a much needed cleaing. Dr. told me to hold off a few more weeks but just couldn't stand it any longer. I was told 3 months before I would start feeling better but I am just short of 6 weeks post op so I must be a fast healer. I feel better then I have felt for 3 years but still keeping my fingers crossed. I am hoping you will be one of the lucky ones & bounce right back but don't beat yourself up if you take longer. Your body will decide your pace!

God Bless!
Terry
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  #24  
Unread 07-09-2003, 09:50 AM
IVP Test for fistula

Hi Julie,

Your're getting great advice here as usual among we fistula sisters.

I can repeat what Terry & Louise said. The supra site tube came out about an inch above my pubic hair line....it was a big tube that was connected by a "Y" tube that also connected to the foley output and all urine went into one bag.....did that make sense. That's when I had both for the first two weeks after surgery. Uro removed foley after 2 weeks and I only had the SP left for another 2 weeks AFTER repair surgery.

I had a hard time with the SP because I could not keep it taped down and it tugged along the hole on my abdomen...but neosporin is helpful...and I found that staying in the BIG bag was the most comfortable and that way I just wore a long shirt with nothing around my belly. It was not pleasant but I knew and hoped it would be the end of my long road....

I do have a picture of me with the SP (not a very attractive picture) and if you want to see it PM me your email addy and I'll send you a picture.

I went back to work at 6 weeks post op from the second major surgery in 3 months because I do taxes and was going to lose my job if I didn't return....I went back to work and was soooo sick that I was never able to perform up to my standards and was "let go" after tax season.....<sigh>

I am 5 months post op now and still am building up my stamina and I have been having nightmares about leaking and bleeding....weird....The doctor says I have post tramatic stress disorder and now I'm seeing a shrink....

I also developed some stomach problems and still have UTI's.....but each day is better and each day will get better and I hope by next tax season I will be strong and ready to work again....

I hope I didn't scare you. Each person is different....and it's amazing how well you will do BECAUSE.....you have to....you have NO choice....and we are woman and we are strong....

Good luck and YOU are in my thoughts.

Renee
  #25  
Unread 07-09-2003, 07:13 PM
Thank you, but now I'm nervous!

Ok, SP catheter sounds quite interesting. Not looking forward to it. That whole tugging & spasm thing is very scary!

Anyway, another question. I'm sorry.

Doesn't having a SP make ANOTHER hole in the bladder? Do they just remove the SP and the hole heals on its own. Confusing!!

Also, did anyone have the fistula repaired vaginally? That's what I am praying for!!!! But sounds like I'm in the same boat as you guys - 2 major surgeries in 3 months. This surgery will be the 4th time I will be put under since March. That can't be a good thing!

I appreciate all of you! I keep each one of you in my prayers at night.
  #26  
Unread 07-10-2003, 04:42 AM
IVP Test for fistula

Hi Julie,

The supra site is not a fistula. When they pull it out it will just close up. Mine fell out on it's own during the night after several months.

Several of the women here have had it fixed vaginally. They didn't have to have the incisional wound to heal but seem to have all the other things that go along with surgery. It also doesn't seem that recovery is any less or in some cases I notice even longer! Some have problems even today where as many abdominal surgeries recovered & are moving on quite easily. So I personally don't believe that vaginal is any easier regarding fistula repair. Also as far as a fistula goes (especially where mine is located) I would prefer the way they did it. They went in vaginally & abdominally so that they could get a good look around not that I had any choice in the matter. Having 4 surgeries in such a short time will definately slow down your recovery. If your dr feels he can repair it vaginally it must be low on your bladder & not endangering the ureters. When is your surgery? I have a friend in Australia suffering from Crohn's Disease. She has over a dozen fistulas inside & outside her body. I have been talking with her for months & didn't know that until yesterday!

Good Luck!
Terry
  #27  
Unread 07-10-2003, 07:19 AM
Terry -

My surgery is July 21 - a week and half away. The doc said that the whole is quite high up, but he "thinks" he can reach it without an abdominal cut.

And the hole is very close to the ureter tubes. That is why the uro here in Columbus wouldn't do my surgery. He was didn't want to cause me any further damage. So I'm off to Cleveland where they are very experience with this type of surgery.

I'll be calling the Cleveland doc today to see what he has decided about my surgery. He was waiting on the the results of my cystogram & IVP to see how close the fistula is to my ureter tubes.

I'll keep you posted. And thanks for your input. It means a lot!
  #28  
Unread 07-10-2003, 08:00 AM
IVP Test for fistula

Hi Julie

How are you Dear Sister?? Sounds like you are getting ready!!! Try not to worry to much as the end is in sight!! I was very relaxed for my surgery and it went VERY well. I had the fistula fixed vaginally- even though it was very high up- My surgeon was skilled in this way of doing the procedure and always tries vaginally first before any abdominal cut.. It depends on how the URO is trained and skilled as to which way they prefer to operate. I did not of course want another abdominal incision and luckily that is what happened. I had minimal pain afterwards and was in the castle for 2 nights and then home. The supra did NOT bother me much at all- the most problems I incurred was the taping issue to my leg- and as I said earlier I found the paper tape 1 1/2 inch to work the best. Get plenty of it before you leave the castle as I was unable to find it at any drugstore around home.

I also just had a spinal for the surgery and was awake and then drifted off to sleep- I did not fare well after anesthesia after hyster and was very sick from it- they could not wake me up etc.- I do not remember fistula surgery and woke up in the recovery room very easily. after surgery I had both supra and foley, but only went home with supra as it all was draining into that bag. I had no more bladder spasms with supra as I had with the foley, which was a great relief.

So please take everyday slow and after surgery, you just have to rest, rest and more rest. You will not be able to do much, so be prepared to let everything go and take all the help you can get. I felt much better in about 2 weeks and had the supra for 3 1/2 weeks after surgery. My URO prefers to leave it in a little longer so everything can heal as much as possible before it is removed. It was well worth the extra time as I have had no problems since except for the occasional spasms if I do not drink enough water.

I know you will be fine and if you have any other questions/concerns please let me know. If you want to e-mail me feel free thru the site and I can give more details if you need them!! Sending a big warm from me to you and thinking and praying with you sweetie. Keep busy- that will make everything fly by until next week!!!

  #29  
Unread 07-10-2003, 08:52 AM
IVP Test for fistula

Hi Julie,

Surgery is right around the corner. I never get along with tape so I buy elastic bands with velcro straps to go around my thigh. They have velcro that holds the tubes down tight. You can buy them at any medical supply store for less then $3.00 & they are washable. The don't irritate my skin. Hospital will even give you one if you ask them. Called a leg strap. I had my pouch taped around the edges & changed yesterday. I had 2 little holes in my skin from the tape. I had taped it because I had a loop-a-gram Monday & wanted to make sure my flange didn't come off during the procedure. Big mistake but thank goodness I had 3M Cavillon spray that takes care of skin irritations. Also I now have a night drainage bottle but you could use this tip for the bags also. I place mine in an antique 2 gal crock so that it won't tip over also takes care of accidental leaks. I also purchased a few protector pads for my bed. If I have an accident I don't have to change the mattress pad or bottom sheet. Of course when I had the supra I still wore diapers 'cause I leaked. Like Renee I usually wore the big bag under my dresses or nightgowns. Even if I went to the store I placed it in a big bag & hid the tube so that it came out a button hole & held bag in front. No one even knew I had a catheter, not that I cared if they did. Even now with a urostomy, no one would know I have one unless I tell them. I hope your surgery is a successful uneventful one.

God Bless,
Terry
  #30  
Unread 07-10-2003, 09:34 AM
IVP Test for fistula

Hi Julie,

You know when the uro explained the supra to me and hubby we had the SAME question. Isn't the hole you're making for the supra AS BIG as the fistula and HOW will IT heal. GOOD QUESTION.

I didn't believe the uro until it happened but he explained to me that the hole that was in my bladder for the SP would heal on it's own with NO problem and the hole in my abdomen would close up too with no problem. I was so freaked about the removal I had my hubby go with me, hold my hand, and I even took a valium and it didn't hurt AT ALL pulling it out....it just felt funny.

I was a bit embarrased I had made such a big deal of the removal of the SP.....but after what we've been through being poked and prodded well WE deserve FEAR!!!!

So your SP hole WILL heal and the hole on your abs will heal too unfortunately left a pretty nasty scar and is numb though. Oh well.

I opted for the abdominal cut. I was scared to be messed with vaginally as I feared he'd start out vaginally and I'd end up with an abdominal cut anyway because he said he couldn't guarantee that he could reach the fistula and that my ureters may be involved....I KNEW what abdominal surgery was and the healing involved AND I didn't know what vaginal healing was about. I had 2 prior C-secs (and the two ab surgeries for hyst, and fistula)

I must reiterate that EVERYone heals differently. I was in EXCELLENT shape. But let me tell you the second surgery in a 3 month span wipped me out. BUT each day is better.....even though I'm dealing with "other" issues I'm working through that too....

Hang in there Julie....we fistula sisters are here to help you.....ASK away ANY questions.....I was unfortunate and didn't know about this website during my ordeal....I found out about it AFTER the operations.....it's been a godsend.

Take care and (((((((((((((((((((HUGS)))))))))))))))))))))
Renee<in CA and about to try for a 3 mile jog before it gets HOT>
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