Spincter injury, fistula - support eachother?

[Cyee]

Hi everyone,

Wonderful weather we're having

I am propped up in bed post-hospital and I was wondering if anyone out there knows of, or would enjoy/benefit from, a thread or support site for people who have experienced the above (sphincter damage, fistula etc.) as a result of childbirth.

In my own experience, this whole area is a bit taboo. In fact the consultants reckon there are many women who have some symptoms related to the above, who never seek treatment. The thought of women embarrassed to discuss these matters is awful, yet that seems to be the case.

So - this (while souped up on painkillers) is a call to arms:

• Is there a site out there for women like us?
• If not, would you like there to be?
• Would a thread on MN especially for this, be useful?
• Would it be useful to share experiences with consultants/physios/hospitals/procedures?

If these matters resonate with you or anyone you know, it would be great if you could point them in this direction. I'm going to post in the 'health' and 'childbirth' sections too.

I know too well the taboo around this. I posted on MN when I got my diagnosis and used a different name...

Hope to hear from some people soon.

Cyee
(successfully repaired as of last Wednesday (fingers/legs crossed))

Cyee, glad your appointment wasn't too horrific - no poking etc - lucky you.
Nothing too exciting with me.
Have a good Halloween

Hi,

I've never posted on a site before so please bear with me... I've had a scan through the posts and have almost wept with relief. I thought I was the only one out there with these problems as I keep being told how rare it is.

I have a recto-vaginal fistula caused by failed ventouse and forceps delivery in Feb this year. I pass wind and small amounts of stool though my vagina/perinium. It's the wind issue that's really driving me crazy as I'm going back to work in a couple of weeks and am dreading the embarrasment. I've already had surgery on 6th October for an advanced flap replacement and sphincter repair but after 4 weeks, my symptoms have returned just as bad as they were before.

My next NHS appointment was for December but I'm too distressed to wait that long and have booked a private consultation with the same consultant. I would really appreciate any advice in respect of what further treatment people have had. I've been told the worse case scenario is permanent colostomy bag but hopefully I'm a way of that.

Hi there, Imnotalone

Sorry to hear you had a crap time, like the rest of us. And yes it is good to find a thread with people in the same sort of situation as you, it has been a great help to me as well.

4 weeks post op is not that long, i am now nearly 12 weeks post op (sphincter repair and the rest!) and I am getting there. Physio is impt for me now to regain control of the sphincter and it seems to be getting a bit better, I did have an accident or 2 around 5 weeks which nearly crushed me. But nothing since.

Not sure if you should be having probs from the fistula area, if small amounts of stool are still coming out (it could be normal as the repair hasn't fully healed yet - you are only 4weeks post op), i would contact your doc, explain the situ - be dramatic if necessary, and say you need an immediate appwith the consultant, if they can't help/get you one...go privately (I did).

My GP was great he contacted the consultants and got me to see them that week cause i was in a bad state. But after app, i had no fistula (just all the rest - if you read my previous notes), so i was put on waiting list like everyone who wasn't dying and coul dmanage with being housebound etc. So i went to see the same consultant from NHS privately and my care has been excellent. POst op i could ring the hospital (nuffield) whenever with concerns and the nurses would talk me through things and if they werent sure they brought me in to see the consultant that day (which i did twice but all was ok TG).

So hopefully this helps a little, as for returning to work, i havent returned yet , and do not intend to til after xmas, until i am 100% fit again - which i am not at the mo.

I had my baby in march so he is prob similar age to your lil one! Good luck. X

Hey Imnotalone... you are definitely not alone. I am so sorry to hear about the experience you've had. I'm glad finding this thread has helped. It has helped me a lot.

I had exactly the same problem as you - recto-vag fistula. I don't think you should be experiencing problems with your fistula post-op - especially as you say they were worse than before? I know occasionally I have a bit of escaping wind that travels around the outside to my vagina now. But once the op was done, I had no connection between the two. Are you sure they're definitely the same symptoms? For example, I didn't have urge incontinence before the op, but I did for a little while afterwards. I also was a bit more complicated to wipe which made me worry if there were any traces of stool in my underwear? Hopefully the symptoms you have experienced are post-op and unpleasant, but linked to recovery? I really hope this is the case, but I'd imagine you just know whether this is the case or not.

I'm not sure whether the op you describe is what DMCT and I had? Ours was something like an overlapping sphincteroplasty?

I agree that you need to be seen sooner rather than later - even if it's just to put your mind at rest.

On the work side - I was back at work for about 3 months before I had my operation and I was absolutely frantic before I went back specifically about the wind side of things. In my experience it wasn't remotely as bad as I thought it was going to be. My only tips are to try and get a handle on any (if there are any) foods that make you more windy than others. For me it's fizzy drinks and curries! I made sure to avoid these things and I didn't have any of the 'major farting incidents' that I had so dreaded.

Please keep posting on here if it helps and I really hope you get good care. I wouldn't remotely think about the colostomy right now. I was told that the great thing about this type of injury/tissue is that they can go back in and try again.

OK - now for the 20 questions! Did you have anal mammometry (sp?) scanning before your procedure? ie did you have an internal scan? Do you know where your fistula is? Is it low down/high up and do they think it's large/small? I don't know where you're based or how large your hospital is/how good their colorectal department is, but maybe worth asking them why they carried out that procedure and what other techniques they use. It might be your consultant is very experienced but not with post-natal injuries like this?

I hope all these questions aren't OTT. Just really hope you're being well looked after.

Please do keep in touch and let us know if there's anything we can do to help. Take care

Sorry to hear about your fistula, imnotalone.

Although I agree with the others about not even thinking about a colostomy now, can I just say I have one (because of cancer) and it really is not the end of the world or anything to get worked up about. Of course it's not what I'd choose but you just get on with it. It's all very straightforward these days. But, as they said, don't even think about it now!

I was hoping you'd come on and say that ThingOne!

I hope the chemo is going ok and you are coping.

Thank you all so much for all the info. I could really cry with happiness after spending all these months trying to cope on my own (my husband and family are fantanstic but they can never really understand what a shock it is to have this happen).

To answer Cyee, I did have a scan before I was put on the waiting list. My pressures weren't that bad and the scan showed that the fistula was quite low down. They didn't say if was big or small. I live in Warwickshire but have been referred to Oxford where I have been having my treatment. I've been told that the consultant is excellent but to be honest, I still don't really understand what it is going on. I took a list of questions with me to my last consultation before the op but I still came out feeling a bit bewildered.

When I had the op, I explained that I thought recently the stools and wind were coming through the perinium, not the vagina. Maybe it had always been like that and because they're so close together, I just assumed it was the vagina - but then that seems at odds with the fistula.

I definitely have the same symptoms post op. It's only slightly worse in that the staining occurs for a little longer but it's never been great amounts, just a small amount of soft stuff when I go to the toilet. I am having a bit of urge incontinence first thing in the morning which is a pain because then I'll need to go at least once, sometimes twice afterwards. But having scanned the posts, I have been doing my pelvic floor excercises which I have neglected to do for some time.

I think you are right Cyee about the work issue. Last week I saw the clinical psychologist as I felt properly depressed for the first time when I realised the surgery had made no difference. She gave me a chart to note down the particular times of day I pass wind and it really isn't as often as I thought. Especially as a lot of the time, I get away with it being silent! It's just the panic of having no control I guess.

Thanks to Thingone about your post. I went to see the colostomy nurse at my local hospital some time ago as it was mooted by the colorectal surgeon there that I may end up with a bag (but to be fair, by his own admission, my case was beyond what he could deal with hence being referred to Oxford). They were really nice and showed me a video e.t.c. I'm sorry if I made it sound like the end of world - it certainly wasn't my intention and if that's what it takes then so be it.

DMCT, I haven't been to see a physio for months. I did initially at my local hospital and had a lovely lady helping me but she has gone off for an operation herself. I will give them a call I think and see if there's any help they can offer me in that department.

Anyway, I'm sorry to have blahed on! I have a private appointment with the consultant next Friday so I will take another list of questions and hold him prisoner until I understand exactly what's going on and what my options are!

Thanks again, I'm so glad to be able to talk to people that understand.

I wasn't offended imnotalone - don't worry. This isn't that kind of thread anyway!

Hi everybody,

I am new to this thread and feel so comforted and yet sad reading everyones stories. I am just starting down the same journey as all of you are on or recovering from. Its so helpful to read your views and share your experiences.
On 13th September I gave birth to my beautiful daughter but also suffered a recto-vaginal fistula caused by failed ventouse delivery. I was discharged from hospital and 13 days later after noticing I was passing wind and small amounts of stool though my vagina/perinium I went to A&E and the next day was diagnosed with a 3rd degree perinium tear.
Eventually I have been referred to a
Colol rectal surgeon at St Marks hospital in North London who specialize in Cololal rectal procedures. I have seen a consultant here and she has told me that it will take at least another 4 months untill I have recovered enough internally to take the stitches in an operation, she also told me that I should have a stomer (colostomy bag) fitted to improve my chances. Does anyone know how long it should take until you have surgery and also do I need a colostomy bag for 4 months before my opeation and one month after operation? Any help is gratefully received.
many thanks

PoorFluffyCat

Poor Fluffy cat

I had my surgery at St Marks, probably same consultant. Didn't have a fistula though, just sphincter repair. They aim to get you in within 3 months if your surgery is classed as urgent. I also had to have a temporary colostomy and although i was told it would be 3 months, it was actually 6 as reversal isn't treated as urgent and I was on the waiting list. As ThingOne said earlier having the colostomy is not that bad and If they think it will improve the healing process then well worth it IMO. They will send you to see the Stoma Nurse prior to any surgery and they will explain it all to you. St Marks is the UK Centre of Excellence for anything bum related.

Sorry to hear this Fluffycat.

The actual opening is called a stoma, with an "a". A colostomy is when you have a stoma a long way down on the bowel, towards the end (meaning you have fairly normal poo and can live a normal life, eat an essentially normal diet). There are also ileostomies and urostomies in different places.

You can manage five months with a bag if it comes to that. I'll be here to egg you on.

There are also a number of websites. I've used ostomyland in the past, which has a related ostomy lifestyle guide which I found very useful. There was a list of some other sites in the recent edition of the Colostomy Association's newsletter "Tidings". You could email them and ask for a copy. It's free. Gosh, I read interesting magazines...

ThingOne about your interesting magazines!

Welcome Fluffycat - I'm sorry you've had this experience but congrats on your baby!

Imnotalone - definitely keep them prisoner until you get answers to your questions! Keep posting to let us know how you're getting on. Your situation sounds exactly like mine - decent pressures, fistula that's low down etc. I know my surgeon a) couldn't find the fistula in surgery and b) barely had enough tissue/muscle to cover the gap he made. Hope you get good care and let us know how the appointment goes. Big up to physio and pelvic floor exercises - they really do help.

Now as maybe is obvious, I have been out tonight for a few vinos.... fabulous I hope I have made some sense regardless.

Speak/post soon, and thanks ladies for being such great support to me and I know lots of other people on here.

xx Cyee

Hi thanks for your advice, I am trying to come around to the thought of having a Stoma if it will help. My sister-in-law works for a different hospital and has arranged for us to have a 2nd opinion with a different consultant who has said this type of injury doesn't need a stoma anymore. I am so confused but will have the 2nd opinion.

bye
Poo Fluffy Cat

Fluffycat, congratulations on the birth of your daughter. I'm glad you found this thread so quickly as I can already see that it offers a lot of support.

I know you probably just want it dealt with but waiting for the op has it's advantages. For me (at 8 months post delivery) I had stopped breastfeeding so my husband managed admirably whilst I was on hospital. I was also mentally stronger I think.

I didn't have a stoma. The surgery itself was through the vagina and my consultant specialises in conducting as least invasive surgery as possible. So it's obviously not a given that a stoma is needed in every case. I think you are right to seek a second opinion.

4jen, I was told that Oxford was a centre of excellence for this sort of thing so I guess there are a few around the country.

Cyee, I was interested to learn that your surgeon couldn't find the fistula - another question to go on the list!

p.s, I forgot to say - how on earth did they miss the fact that you had a 3rd degree tear? It may not be what you want to think about right now but it's certainly cause for complaint. It's an individual thing but it helped me a little to make a formal complaint to the hospital to try and thrash out why this had happened. This was only a few weeks afterwards. In the end I felt it was a bit of a cover up but at least I got to confront the people involved - in a calm manner of course...

Hello everyone, just a quickie from (a now sober!) me. Definitely worth getting a second opinion, Fluggycat. I know people who have had colostomies put in as part of a two-stage procedure, but in general people don't. It's worth saying that I think colostomies are more usual if/when the fistula is higher up. The aim is to totally disable the bowel before the procedure. In my case that wasn't done and both my surgery and recovery were fine. I was intending to ask my consultant why do some people get colostomies but I didn't get round to it in my last session.

Fluffycat - I had my procedure about 10 months after I had my LO. I do think I recovered more quickly because of the gap between the birth and the operation. While it is probably horrible to consider experiencing these symptoms for any longer than necessary, I certainly felt that I was back to my 'old self' when I had the op. Birth (even the non-horrific variety) take a while to recover from. That said, you will make the decision that's right for you!

In terms of leaving hospital without anyone noticing, the same thing happened to me! I'm a bit of an oddity because I had a brilliant birth (pushing for 11 mins etc.) and left hospital without a stitch. Fistulas aren't like normal tears and smaller ones are very very difficult to see. I was well checked around the vagina at the time of the birth as I had a small graze, but considering my consultant couldn't find my fistula when he knew it was there and had a scan to direct him... they're clearly hard to spot.

That said, I absolutely agree that if you feel in anyway unsure or aggrieved about your treatment, you should use the PALs process. I've heard great things about it.

Not such a quickie afterall!

Take care all and keep posting

Fluffycat not Fluggycat - I really am sober!

It seems there are a few of us with misdiagnosed tearing. You can complain to the hospital but chances of them admitting they made a mistake (if that is the case) are nil. You can also get a copy of your notes, Pals can assist with this.

As for the colostomy situation, my consultant told me quite plainly that they would have to make the repair so tight I wouldn't be able to go normally for awhile!.

My surgery was 11 months after my dd was born. I was just about feeling normal by then, no point rushing in to surgery when you have had a traumatic birth and small baby at home.

Yep I agree 4Jen (hello!). At the very least those who have had traumatic deliveries should be advised about what symptoms to look out for. I kind of understand that I was missed because my birth was so straightforward and I didn't really have any obvious damage. I don't feel the same for those of you who had clearly suffered very obvious damage.

I can understand that the medical guys may not want to worry lots of people unnecessarily when the reality is that these injuries are very rare. However I experienced a complete lack of awareness about fistulae etc. from GPs and even the gynae. I'm sure they deal with conditions that are far more rare than our 1%... That was kind of my thinking behind this thread and the possibility of setting a web site up - ie to raise awareness and provide a supportive environment for people who are hitting a brick wall with their medical teams or who just experience the loneliness and fear that so many of us have expressed on this thread.

Hi eveyone I hope your all well, I have complained to the hospital trust and now they treat us with a kind of contempt. I managed to get my notes but its so difficult to obtain any information from NHS staff, one General surgeon told me he hadn't seen this type of case since a girl fell out of a tree and impailed herself on a branch. I was so glad to have been transfered to St. Marks as an out-patient. I dont know how you all coped with the physical and emotional pain for so long.
The midwifes should explain the risks and what to look for afterwards as standard practise, Thanks for the Advise Cyee, 4jen, imnotalone and ThingOne. I feel so much stronger knowing I can talk about it with others who are going through or recovering from the 1%

Cyee, I think these injuries are becoming more common than 1% unfortunatly. The crisis in maternity care and that fact that lots of women are becoming mums later in life all adds to the risk. As you mentioned, nobody wants to be scared out of a natural birth by medical professionals talking about fistula's or incontinence, however there should be more information given about the risks of an instrumental delivery. Signing a consent form for use of ventouse etc ,when you are in the full throes of a difficult labour is hardly the way to provide this info and I expect that is the first most mums will know about it. I appreciate that this was not the case for you but for most, this is how these injuries arise. A website would be a great idea if you have time to do it. I felt terribly alone and depressed when this happened to me and talking to others on the net was a great help.

Poor fluffy cat, I had great difficulty getting my notes and didn't bother making a complaint as I could see it would get me nowhere, the trust will be hearing from my solicitor instead!. You are in safe hands at St Marks, they restored my faith in the NHS, as I was terrified of ever going near a hospital again.

4jen I fully agree with your point about the consent. It's not true consent and to be honest, I'd have signed anything at that point. At my hospital, the midwives were too concerned with trying to get the baby out 'naturally' which is why they let my labour go on so long when it was clear that my baby was not making sufficient progress. We had decided beforehand that we would totally trust the professionals and take any advice that they had to give.

The registrar that delivered my son went way over the top, inserting and reinserting the forceps four separate times after the ventouse came flying off after the 2nd pull. I had an episiotomy which cut an artery before he actually realised that my son still wasn't making progress. He couldn't do anything about the loss of blood due to the fact my son was in severe distress and had to be pushed back up by the midwife in order for a caesarian to be carried out. He was born not breathing and fitted a number of times so was taken away by the crash team. I eventually had 3 units of blood and spent 2 very lonely hours being stiched up with no-one telling me what was going on, shivering cold. My husband didn't know where to go but our son was very poorly so he went with him. I didn't get to see my son for the first time until 8 hours later when my husband came back to hospital and sourced a wheelchair. The midwives were too busy and I was too tired and in shock to demand they take me.

No-one even told me how bad the tear was until 2 days later when I wondered why my bum was so sore. The lack of information before and afterwards was astounding. We covered instruments in the antenatal class but did not discuss any associated risks. I know there's a balance to strike between advising and scaring but at least people would be able to make an informed choice when signing consent forms.

I too have sought legal advice because my injuries and the traumatic birth my son went through could have easily been avoided had they conducted a caesarian earlier. They seemed suprised when he was 10lb and seemed to put some of the blame onto that. However, my measurements during pregnancy were always way over the top line, I'm 5'4'' and weighed 9 1/2 stone before getting pregnant and I was huge at the end. It didn't take a lot of detective work to realise I was carrying a big baby!

Oops sorry I've ranted on... My son is absoultely fine now. We have quarterly checks at the hospital which have been fine... and even though I would slate my care, my son was extremely well looked after in special care.

Anyway, I would like to offer help with a website. I have no I.T knowledge but if I can help, I will.

Reading the latest posts has made me so sad and angry. There is a crisis in maternity care and it's bloody awful the consequences some of us are dealing with.

I was annoyed enough about my own situation even though I can understand why my injury was missed.

Sounds like the first port of call is to establish how many people are suffering injuries like this. I think I will get back on the case with a web site.

Grrr... I am so cross.

Have a good weekend everyone.

Iamnotalone - I feel so sad reading your story and very glad that you son is doing fine. Our situation's are both similar but I feel yours is more upsetting than mine.
I asked for a C section I was a size 8 before pregnancy and my DH was a big baby, but the midwifes said they only do C section in emergency's so refused. I had a 36 hour labour and when they told my DH they would use a ventouse and if it didn't work then they would use foreceps. I also had to wait over 5 hours until they could remove my placenta in Theatre. They should use logic deciding where and when to use C sections.

Cyee - a web site would be a great help for eyeryone in the same predicament.

4Jen - I think Im going to get a solicitor involved, once I have had my operation. Also did a stoma make the pain easier to manage and how long do you have to suffer the belly pain because i know they have to insert a pipe through the belly.

Also ladies how did you all cope with the constant pain day after day before your operations, and what tablets did you take because I have an infection/swollen area below and am in constant pain everyday.

Poor fluffy cat, upset is very subjective! I know everyone one this thread has been through an awful time and no-one's is worse that anyone elses as we have all suffered.

I don't know about anyone else, but I don't suffer from any pain normally. Obviously there has been some discomfort post op but I wouldn't say it's painful now so maybe you need to go back to the docs and find out what is what is causing it. Clearly I'm no medical expert but it doesnt sound right to me. Have you got medication for the infection?