Recto-Vaginal Fistulas - Part 5

Scatterkit,

I have never had a vag. infection. I don't pass stool very often, but when I have I have never had an infection. I think trying to keep clean is the best thing to do when you notice stool.

I hope your appointment goes well. Keep us posted. I know it is a tough decision. I had a failed repair. Fortunately, mine doesn't seem to be worse. I am planning to just live with it for now. I don't want to go through surgery again anytime soon!

CJ

Hey ladies,

just checking in and it is quiet-hope that means good news for all. All good with me... Best, Beegirl

Things have been good for me, beegirl. Hope you're enjoying the weather, school vacation :-D , and feeling like your old self. Sometimes I look back and feel like I've been through a war. Glad you were there to help me through.
Penny

Penny-ditto, this board was a life-saver for me, especially when I was really down. I am so glad you are doing well. Gosh, it is such a long waiting game.

Bea-how are you?

CJ-any news?

All-be well-there are good outcomes, it just takes time. beegirl

Hi Penny and Bee girl,
I'm OK but still in the thick of it. I'm glad you girls sound so good. I saw my new consultant on Monday. Apparently my anal canal is held together by scar tissue now and in order to stand a chance some reconstruction is needed. I think the thing that Penny had to do with the sphincter muscles is what is proposed for me (penny - I hope I am remembering correctly here) - cutting them and sort of wrapping them round over the hole (which is now in the anal canal not the rectum). In addition she proposes to use some fatty tissue from one of my labia to help with the reconstruction. She rates my success chances as 50%. If it doesn't work then she proposes one more attempt - provided the damage is not to bad. After that, it is a permanent stoma. Bascially each operation causes scar tissue which reduces the chances of the next operation. In addition, the fact my fistula was caused by an infection rather than physical trauma (child birth) also reduces my chances. I think it suggests something about my body being prone to infection in that area.

As you can imagine I rather shocked by all this, but this news is not her fault. I am going ahead with the operation because there is no other 'better' alternative. I have to accept the low chances - no other operation has worked so why should this? however, at least I have some honesty and good information which I felt I did not have with my last surgeon. Flower if you are reading this, you helped me find a good hospital.

My spirits are OK with the sun and warmth we have here and even if this whole awful thing is going to leave me with a colostomy, then maybe it is coming to an end and that is almost as good as getting to the right conclusion. Don't get me wrong I hate the prospect of the likely outcome but if I am to get my life back properly I need to stop having operations. I'll let you know when I get my date.

As for you two, this site has kept me sane and the support has been fantastic. Anyone new reading this - please get a consultant who will talk to you and explain the real chances of success for your operation.

Bea

Oh Bea, I think you are dealing with this so well. I know everyone's experience is unique, but I remember when I thought that the ileostomy may be forever (as my second surgery was not successful, at first, but ended up healing well) so I accepted the idea and I was ok with it-because you do get use to the ostomy. And really, like you know, it isn't the end of the world. You are incredible- and you never know what can happen. Just need to tell you how much respect I have for you. and also how much I care... My thoughts are always with you. Beegirl

I've been reading this thread for a couple of months now. I've got a fistula as a result of giving birth to my first child, George, on Xmas Eve 2009. The care I received at the hospital was non-existant, I had an episiotomy, and 4th degree tear, it was on Christmas Day that I first noticed that liquid faeces was passing through my vagina. That and Georgie being in intensive care made for a horrendous Christmas. I saw the consultant who delivered George on the 27th December, and she said a I had a recto-vaginal fistula and may need a colostomy to repair - I'd never even heard of this as a result of childbirth and was truly shocked. I've seen another gynae since then, and been referred to a colorectal surgeon who arranged for an MRI and physiology tests. He has referred me to his colleague for the repair and I met with him last week. He says that there is a 90% chance of repair with a colostomy (or ileostomy not sure which he would do) and 80% without. He is erring me towards the stoma, but I'm really not sure it's worth it for 10%? My symptoms vary, between hardly noticeably when my stools are hard, to not great at all when they are runny. But they have got much better, at least until he put a sigmeidescope or whatever it's called up my rectum when I say him last Monday, seems to have made the hole a little bigger. My sphinctre was left largely in tact, inner muscles ok, but outer weaker, I don't have the same control as before George was born, but certainly not incontinent.

Just not sure what to do now. I see that some failed repairs made the hold bigger, I certainly don't want to risk that. I also really really want to avoid a stoma if I can, I've done a lot of googling and a lot of sites say that colostomies are rarely used in the repair, that's not what he inferred to me. Georgie is 4 months old now, and weighs just over 15lb, it's bad enough that I won't be able to lift him for 6 weeks after surgery without a colostomy, but with the bag, and the abdominal damage that is done and requires rest for repair, it will be nearly impossible to look after my son. My mum will help, will probably move in, but she's 70 next week and it's really not fair. Hubby will take some time off work, but can't take too much as he had most of January off to look after us both. I'm also supposed to be going back to work on 5th July. I should probably have a repair, but I really want to avoid the stoma, I'm seeing the stoma nurse on Friday, and the surgeon again next Tuesday, so can ask more questions, but wondered what you might think? I'm half tempted to say I'll go on a clear liquid diet for a couple of weeks after surgery to see if that helps some healing without too much faeces going in the bowel .. I can certainly do with losing 28lb or so! help!?!?

Hello Everyone.....I was just thinking about you all.... am still holding my own, some days I think I am healed and others...not quite there yet, but have been told that it does take time to heal and now that I no longer have the colostomy , it will take longer, so I have patience, enjoy my walks, my life and am so thankful for having come this far, I too feel like I fought a battle and have the best "army" of friends to help support me. I think if I would have kept the colostomy a few months longer.....but it's a c**p shoot either way. I love getting out and being able to mow and do yard work after not doing it last year. Bea. you are giving this your best shot to correct it and I truely hope and pray that the outcome is good and if you have to have a colostomy then know that you have given it all that you could have. You are fighting harder than I think I could, so if anyone deserves closure on this , it's you !!

Guest with the new baby...george...I wish that I had the colostomy when I had my 1st surgery, When I did finalyy have to have it, things in my life improved...I was able to sit normally, walk, shop and after the 6 weeks I was able to lift my dogs and do anything except play football !! I was doing sit ups by the 4th week post op. So don't completely rule out a temporary colostomy......talk to your dr and be very frank and honest with him and he should be with you too, that is what is important. education and knowledge is the key here and of course having a great support group helps.

Take care all and stay in touch, Bea...I am rooting for you !!

Bea

Can you recommend a colorectal surgeon in the UK? I commented as guest above with baby George.

Teya

Hi Teya,

I don't know where you are based but I am currently seeing Carolynne Vaizey at St Marks Hospital in North London. I've only just met her but the hospital is dedicated to bowel disorders - it does nothing else. It's on the same site as Northwick Park Hospital. It takes national and international referrals and also has a private wing if you have insurance (and you can mix and match - I've just had a private consultation but she has referred me for NHS treatment as the insurance I get with my current employer won't cover it yet). Bascially your GP can refer you from where ever you are. Flower who posts on this site asked her surgeon in the States and he recommended Robin Philips who is also at St Marks. I'd suggest looking on their website and reading the consultant profiles as you might 'warm' to a different one. I have to confess that although I have no problem with male doctors, there is something nice in seeing a female (this is my 4th consultant ....). The Hope Hospital in Manchester also has a good reputation on the bowel front - someone I met at St Georges goes there now she has moved North. If that is nearer you let me know and I'll ask my friend to get you a name.

I read your post yesterday and I don't know what to advise. Based on Miss Vaizey's comments to me, the fact yours is the result of childbirth increases the chances of success. As each operation will cause scar tissue and that will reduce the chances of each successive op, the stoma option, while awful at first (I remember how I felt when it was first mentioned to me) should be considered. It may be worth trying one repair without - but as you'll see from my last post things can get worse and worse and with the chances of success getting less and less. I would encourage you to try and get referred to St marks or the Hope straight away because fistulas are difficult and you need the best straight away. How I wish I'd met Ms Vaisey before. Please keep posting of you want to talk. Also feeling really down with this thing is common. Don't beat your self up - it attacks your sense of being a woman. Friends are good but there is no shame in asking for some sort of help if you need it. I see a counsellor - others are on antidepressants.

I hope this helps.

Flower and beegirl - thank you for your support - you are so good and it really helps, it really does. Keep us up to date with your news.

Bea x

Bea

I'm in Romford, Essex. Had my baby at Queens hospital and was originally referred to a consultant there, who then referred me to a Professor Dorudi who practises at the Royal London and Barts. Saw him privately as work insurance covers complications but not childbirth, he said I needed to heal a little first, I then had the tests in Feb and he then referred me to his unit leader, professor norman williams, he seems to have lots of experience, but just not warmed to him as much as the first prof. Will see how it goes and find out if my health insurance will allow me to have a second opinion. Its just so hard to know what to do for the best, if there is an 80 % chance this can be fixed without a bag I'm so tempted to take it. If only the NCT antenatal class leader had said not to push for more than an hour and half, midwife care was poor, no surgeons or anaethetists available, so nearly 4 hours after starting to push, georgie was born, forceps delivery that left him in intensive care for 5 days and me feeling like sh*t, literally.

Teya
x

Teya
It has to be a personal decision as to what you do - because we can't predict what will happen and only you know what you feel comfortable with. I went with a repair without the stoma first but mainly because the repair with a stoma wasn't offered. I get the general impression that one repair without a bag is normal. But if it doesn't work I would say to really consider the stoma then because as I said before your chances will diminish with each op (probably). Another thing to seriously consider is whether you want any surgery at all. This might sound strange but surgery can make things worse and I am facing a permanent colostomy now unless my luck suddenly changes. Generally doctors will take the view that if you are sitting in front of them you want surgery so make sure they cover the risks with you (in particular damage to your anal spincter muscles which might make you incontinent). I don't expect that you will refuse surgery but make it a positive decision rather than a default as you can't undo the damage once done. I think I would have still had surgery despite what has happened as my fistuala was large with poo coming through every time I opened my bowels. That wasn't really acceptable on a number of fronts. So I'm not saying don't have surgery, just consider it an option.

What I wish I had done was got referred to St Marks sooner.

Re the second opinion - it cost £200 for an initial consultation with Miss Vaizey. If you wanted simply to get another view and you can manage that cost then it might be worth it even if the isnurance doesn't cover it. Best thing would be if you get your GP to send copies of the letters he/she will have received from your other consultants. Plus any results of scans - have you had an endo anal ultrasound? Do you know how high up your fistula is?

Meanwhile try to hang in there. Your story sounds familiar in that there are a lot of 'what if's. I feel for all the mum's who have to face the fistula at a time when you are already tired and with so much to deal with a baby. It should be a time of joy. I can only say that hopefully things will improve soon - there is a really good chance that the first op will work whether you have a stoma or not. If it does please let everyone know as it tends to be those of us who have the bad experiences who post. And we need hope!

Bea
x

Bea

Not sure where exactly my fistula is, I've just requested and received a copy of my mri and physiology test results, and will look to see a second opinion, it can't help to have a little more information (or maybe it can, sometimes I wonder if the internet is such a great thing!!). I'm still erring toward repair without a bag, 80% chance of success is still pretty good odds? Having said that, only 0.1% of vaginal births end in a fistula in the western world, so I've not been so lucky so far. I will also ask whether or not repair should be carried out, or given that my symptoms aren't too bad most of the time, whether I should leave it at least a little while longer to see if the hole gets any smaller.

Have my fingers crossed for you.

Teya
x

Hey Ladies:

I have been doing okay! I have noticed a few specs here and there come through when I have had a softer BM. The other day, I supressed a soft BM and I had leakage come through (more than specs). It made me really upset! UGH! But then that same day I had horrible diarrhea! I think i had food poisioning. I was on the toliet for and hour with diarrhea. Nothing came through!! Beegirl- I thought of you because I know you have said that you will have diarrhea and nothing comes through.

So, I guess for me, if I don't go to the bathroom when I need to I will have leakage! I guess the diarrhea bypassed the fistula because it came out quickly! I don't know. Any thoughts about this??

I really don't want to go through surgery again! I think I can live with this for now. BUT I do worry that the older I get that things could get worse! Penny and Flower why did you have sphincter problems to begin with?

Bea- Keep us posted on your next surgery! I will be thinking of you! : )

CJ

Hi everyone,
Bea, thanks for keeping us posted. I wish things were much better for you but I'm glad you found someone you can trust and she's being honest with you about your chances. Do you feel the damage you have now with your sphincter is due to the surgeries or has more to do with your original abscess? I often feel that my urgency is a result of my first surgery and the resulting impaction. The MD made like it was nothing but the result was more damage than what I started with.
CJ, my original problem came at the time of childbirth, 28 years ago. I went on for 25 years with no problem and then began having staining and pain. I think the pain may have been a hemorhoid (my spelling is atrocious). Now I have greater urgency and have occasional leakage which I never had before. Things have improved lately because I've tried to make sure I empty out as much as possible every morning and I use Align, fiber pills and imodium. But still there are times during the day that I have to go again and if I dont' hit a bathroom there can be leakage by just walking. This is all because of the sphincteroplasy not the fistula which was a byproduct of the surgery and eventually healed on its own. If it hadn't I was ready to have a GYN try a second repair which would have been another sphincteroplasty, a very hard decision.
Good luck to everyone who is still on the mend. I occasionally think of trying another surgery but for now I'm trying to work with what is. Glad to hear, Flower you are enjoying life again. That's certainly the goal for all of us.
Penny