(Lost first post so if this is a double up I am sorry must be late in the day)
Hi all, I have a VVF and was given the option to do the repair at week 3 or would have to wait till week 12. Week 12 meant less chance of reoccurence, and I have chosen to wait as 8 weeks is better than having the next 50 years with problems.
I was wondering all you lovely sisters who have had repairs, was your first repair successful and how long was it since your hyster that it was carried out?
I am just collecting info, my Uro is excellent, but basically here in little old NZ there has not been a lot of call fot this type of repair so he can only site me 2 cases that he has seen in the past 2 years, both waited and both successful.....
Any advice on the recovery would be lovely too, although after 2 c-sections I am hoping it would not be too much worse, although those were smiley face cuts and not vertical like he will be doing, using omentum also, he has not mentioned the labia use for repair, now I would have to say no to that!
Thanks fistula sisters you are a fountain of knowledge that I would be lost without right now.
I am feeling for you! I had my abdominal VVF repair 8 weeks out. I had a catheter put back in 1 week after the LATVH and then removed 2 weeks after the VVF repair. Total of 10 weeks with a catheter! The recovery for both was similar, but prob worse with the abdominal incision. Mine was a horizontal bikini cut with omentum used as well. This is my third day without the catheter and all seems fixed, but I am still cautious and not saying yet that I am sure I am fixed, although I am dry and peeing normally. It has been such a long road with ups and downs daily like a roller coaster! This has definitely been the biggest challenge of my life, but it will pass for me just like it will for you and we will all be more wise and more appreciative of the little things in life because of it!
Thanks for your post Erin, so great to hear you are dry at last, and without that catheter, I have pretty much had this in for the past three weeks already, and another 8 to go... The trouble is it keeps slipping through the hole in my bladder (bottom at the back) so I just want to pee normally, my Uro repositioned it yesterday after that happened and back to wet and going via the catheter again, then today was out this morning and went to empty only to find the cath tube totally full of blood, now that scared me, I rang him and he met me in 2 minutes at the private hospital (yes on a Saturday!) took a look and said it must be due to the cath going through yesterday, and to make sure I kept the fluids up. Has anyone else had that problem, I know I have had 2 bottles of water now and it is almost gone now.
Also I keep getting the urge to wee, and just have to release it, around the catheter as it is causing pain. Is that like a bladder spasm? Have something to combat that along with everything else too.
Better head off to bed soon I am totally shattered today, for some reason I seem to have forgotten about only being postop LAVH not even 3 weeks, due to this bladder trouble as everyday I am out at doctors/chemist or hospital.... Tomorrow is a complete day in bed.
Fingers crossed Erin that you are totally healed now, it is a long road to repair isn't it....
I know what you mean about all those problems! I had them all! Even 3 days before the catheter came out, there was some blood in my urine. For me, I think it was bits of tissue that broke away from the healing incision and colored the urine. Are you saying that the tip of the catheter inside your bladder was inside the hole in your bladder? That is something I never considered! Maybe that is why I didn't leak much vaginally. I thought it was because of the lack of bladder spasms. Not sure! I also had bouts where I would leak out around the catheter. What are you taking for bladder spasms? The meds will help that. I even experienced early on my catheter tube getting clogged with clots and had to rush to the doctor to have it flushed out. I shudder as I remember all I have been through with this. Those 8 weeks are going to crawl by. Be careful to watch for bladder infections! Keep drinking plenty of water. There is an end in sight!! Everything with me is going great so far! Keeping my fingers crossed! Get plenty of rest! My second surgery was also Feb. 20 so I know EXACTLY how you are feeling!
I waited the 12 weeks and I am healed now.
I am so sorry you are going through this. It stops your life. I had to work waiting for my surgury with a catheter and that was not fun at all. I had the cath for 4 months and had so many problems with it. I got UTIs and yeast infections from the antibiotics. I was always peeing blood and puss and who knows what. I was allergic to the latex cath and as soon as I got a silicone cath I got a little better. Its stiffer and hurts more to walk but didnt make me bleed as much and not as bad spasms.
You can click on my name and read my posts. My story is not fun to read.
I am better now. I am still having some problems but for the most part I am dry and not in any pain anymore.
Good Luck and please make sure your dr is qualified. With all the problems I had with my uro if I had to do it all over again I would have only let my urogyn do my repair surgury. My uro was very inexperienced and took my cath out too soon after both my repair surguries and the fistula opened back up. Both times a cystogram showed I was healed. After the second repair failed I got a urogyn who put back in the cath for a few weeks and then I finally healed.
I did have a horizontal cut, and my VVF was way up on top between my ureter. I would talk to your dr about the horizontal cut and ask why.
I would definatly wait the 12 weeks before having the repair.
My hyst was March 2; repair #1 (vaginal) in July; repair #2 (abd - vertical incision) was in October.
You want to give yourself the best chance at repair. However, while I was waiting for repair #1, I did not have a catheter, except for 2 weeks after the hyst. I decided I would rather change BIG pads frequently than use the catheter.
Depending on where your fistula is, your dr will decide which incision will work better. For instance, if someone has a fistula between the ureter and the vagina, it is lower down and a horizontal incision would work well. My fistula was high and on the back side of the bladder. My surgeon decided to get the best look he needed to do a vertical incision.
I was very fortunate that he did, because by then I had started getting adhesions, and my bladder was stuck to lots of stuff. So during repair#2, they also picked adhesions out for several hours.
My hyst was a "bikini" cut. The vertical incision maybe took slightly longer to heal, but in my case it was well worth it. So, after discussing it with your dr, you will have to take his best recommendation into account regarding which type of incision would work better in your case. I don't think the recovery would be any different than when you had a c-section, even though the incision is the other way.
Does your catheter have a little balloon filled with water inside your bladder to hold it in place? I know sometimes the balloon can deflate, causing the catheter to move out of position. Also, it is not unusual to be able to pee around it, especially when having a BM (T.M.I. !!) And, spasms can make can also cause the urine to push out around it.
There are meds you can take to help with the feeling you have to go all the time.
Hi all, will try to answer the posts in order, some great advice from you all and I am taking notes as we speak...
Erin, yes thats what did appear to be happening, the hole in bladder is low down and at the back, and it seems to be just the right place for the tip of the catheter to fall through as it has happened twice now. The 2nd time I was no longer incontinent at all as it had plugged the hole. Now back to wet wet wet, I am really feeling down today about it all and had a good cry (first time) at the extent and realisation of what is happening to me. Think I have just been on autopilot the last few weeks getting myself through this. Having had the LAVH, and in total 3 general anaestetics since 20 Feb, it is starting to catch up with me, all the hospital visits etc and no rest.
Today if my Uro had of phoned I would have said lets do it tomorrow. I'm glad now I have perked up slightly and know after tomorrow that I will just have to wait the 8 weeks now which is best anyway.
The catheter is causing me grief and discomfit, I will definitley look into changing to silicone as maybe this is some of the trouble. I feel inflamed right where it enters the uretha. The thrush is coming under control now slightly and the itching is nearly gone thank goodness.
I am having trouble with keeping dry at night, do you all have any suggestions? The continence specialist gave me loads of different pads and pants to try but still wet through sides at night rather than soaking whole pad if you get me?
I also find the catheter is dragging and causing the spasms too, the more clothes the worse it gets, and the tighter they are the worse off too, I am hanging about home in my PJ bottoms all day for comfort.
I have some meds for spasms and Uro told me to up the dose slightly to see if they will stop.
I am also wondering if the catheter is worth having, there is so much going through to the pads and I'm not sure if I should even bother with it, 8 weeks of irritation, it is even uncomfy to sit too upright. Feel like maybe I can deal better with the wet if not dealing with the discomfit of the cath too.
As you can see I have a million thoughts and questions, I have just told Hubby all about you wonderful ladies who can offer the support and shoulder to cry on, having been there yourselves. Anyway this was just a quick few thoughts going back to read your posts again and see if I have missed anything!
District Nurse comes Tuesday so may see if she has those cover protection sheets for the bed (not plastic) like they use under you after surgery, maybe save changing bed all the time too.
Also did you bother using your night bag? I find it a hassle to use it as then have to cart it around and often have to get up in the night anyway to the kids so just empty leg bag then... And finally where did you find the best position was for your leg bag (apart from on your leg LOL) high or low? Did one or the other help with the dragging feeling?
Wheeeew ok off to read posts now.... You will all need a rest after this!
Catlady, I just canot imagine going to work everyday with this cath in, I am a stay at home Mum which is easy when you find yourself needing a change of clothes.
Do you mind if I ask how soon your Uro was taking out your cath after the repair was done? Does it need a good few weeks to allow it to heal? Thats such a shame for you to have to face it all again, you were so near the finish line, I bet you were frustrated with your Uro after that.... I know I would be.
I am going to enquire about the silicone Cath now too, as the irritation is awful, what symptoms were you having to alert you to the allergic reaction?
I will definitely go back and read your posts, and Dee and Erin too, it is wonderful info for me to go armed and asked questions about before surgery etc.
Will enquire about the vertical or horizontal incision as have the 2 horizontal C-sections already and it would be nicer to have it down there once more so I don't look like a railway crossing. My tummy is such a mess of scars and stretch marks from big babies but still would be great not to add to the roadmap...
Dee I am really interested to hear about how you found using no catheter at all in between times? So did you leak completely into pad or were you also able to make normal wees too?
My trouble was that when I had no catheter in and drunk to much water (in the beginning) it was only a matter of a few hours and I would go to the loo and urine was going out the hole, and burning up inside my abdomen right up to under my armpits then the cramp started from pubic line to boobs, like one major labour contraction that lasted about 40 minutes, I was rushed back to hospital twice with this, once by ambulance and once Hubby drove me. Both times because my gynae was not listening and just removed cath and sent me home thinking I was only suffering retention due to major manipulation during LAVH. Bladder was stuck to Uterus well and truely so he had to do the adhesions then (laprascopic).
I am scared to have the catheter out completyely in case that happens again, although at that time there was no fistula so urine not escaping anywhere and bladder was filling. Now maybe it would be different as bladder still emptying just via wrong hole.... What do you think, will run it past Uro tomorrow.....
Very scared of having that awful pain ever again.
Will ask him to check the balloon, it was too full before, so maybe deflated too much now....
Off to bed now, in hopes of a better nights rest and no wets... I am trying to keep the water up for the bladder and to stop infections etc, but then don't want it all coming out at night time.... Did anyone find a good cutoff time to stop drinking to make the nights easier?
I started cutting back on fluids after dinner. Just a few sips here and there. I stuck strictly with a leg bag because I think the risk is greater for introducing infection if you are disconnecting and reconnecting the bag daily. The bag was on the inside of my left leg, and I put bricks under my mattress to elevate my upper body and help with drainage!! I also found that taping the tube to my inner thigh kept the tube stabilized. I could not stand feeling that tube moving around inside me! For that matter, I stopped wearing underwear because it pulled the tube to the side and hurt. For me, I slept on my back and then left side after about 6 weeks post-op. Again, I didn't leak at all. I think the catheter must have blocked my fistula as you described!
I had the catheter for 2 weeks after my repair. Then the fun of retraining your bladder. I never had such severe pain as you described. Sounds awful. I would be afraid to go through that again as well.
You are lucky you get to stay at home while you wait. Stay hopeful for drier days! They will return!