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))

Hi everybody, hope things start going well for us all soon.
imnotalone, hope this time is completely successful for you! I am not looking forward to the anaesthetic as well, I am pretty sure I will be sick again on that. I am still undecided wether to use the stoma or not, but thinking it might maximise my success rate. I went for a second opinion, but unfortunately the consultant has only carried out 2 fistula operations, so i might have to stick with St. Marks which has very good reputation.

Poor fluffy cat, despite what I have said in earlier messages, I would highly recommend you have a bag. I wish they'd have just done it last Wednesday because every day I'm constantly fearful that it hasn't worked. Yesterday I spotted a bit of brown staining after I wiped and went to pieces. If it fails again, I can only have it done once more before the chances of success dramatically decline.

Last time, it was 3 weeks before I realised that it had totally failed. I've got another 2 weeks of total mental agony which may have been easier had I had a bag as I would know there was literally nothing else that would increase the chance of success - whereas I'm still wondering...

Thanks for your words of support Jacksfirstchristmasmama (blimey what a lot to type!). It means a lot to know there are people out there who totally understand and don't just sympathise.

hello to everyone on this thread.

i haven't dared step onto this thread before, because i've not felt upto facing my problems until now.

feels a bit like coming on and saying hi am songbird i am an alcoholic.

i had a 4th degree tear 18 months ago, and it still causes me problems

only today after chatting to the automatic and special offer on childbirth last night.i phoned pals at he hospital where i gave birth and am arranging to see my notes hopefully
they said its going to cost 50pound which is alot to me to get a copy of my notes or i think i can go in the hospital and view them. i think thats a tenner.
i was a bit upset when i called so i can't quite remember what she said.
i think i am going to find this process difficult and quite scary but i am sick of having nighmares about the repair operation.

anyway i am going to try and read this thread now.
its going to be difficult to even read this but hopefully it will be a step in the right direction of recovery

so sorry for every single person thats been through these kind of problems its horrible.

Hello Songbird! I know what you mean about it feeling a bit like AA... but hey most of us can still have wine which is one good thing in the midst of all this.

I am sorry to hear about the problems you've had. How have they affected you? Have you gone through a repair process? Our little ones are about the same age. Mine is 17 months.

Well done on starting the PALS process. I have also heard good things about the birth trauma association.

Please do post on here and stay around if you think it will be helpful.

Imnotalone I SO feel for you. You must be on a constant state of alert. I remember at one point I farted and was convinced it had come from the 'wrong' hole and therefore that the op had failed. Thankfully it was just a weird wind episode (first of many!). I really hope it has worked this time. It's a horrible time worrying and every toilet visit is fraught... as if it isn't sore enough. How have the last few days been?

Interestingly, while I didn't have collagen (that I know of) I also barely had enough tissue to knit together for the repair. I suspect this is probably one of the reasons we suffered these injuries in the first place.

On a positive, it's pretty much 6 months to the day since my op and touch wood things seem to be getting more and more normal... as long as I avoid week day curries and fizzy drinks!

Hugs to you and to us all. We bloody deserve them!

Bump! Hi everyone

Welcome to the thread, Songbird. It's terrible that you have to pay for your own notes, what's NI for? also it's NHS Neglegence. I managed to get a copy of my notes, but they didn't want to hand them over.
Iamnotalone, I really hope your operation will be successful this time, fingers crossed. I have contacted with a colostomy association and they have sent out some information, it seems it's a major procedure to have one installed, so I might try without a stoma for my first operation(hope it's the one and only!).
Cyee, I am glad to know that you are on the mend and hope to copy you in six months time.
I have had a second opinion from a general hospital, she is a excellent surgeon, but only carried out this procedure twice. so I can't make my mind up if i should go for St. Marks who specialise in this but they treat me with contempt and haven't even bothered to write to me after the consultation in October.
My baby now refuses to take my breast milk, but I am so scared in case my period start again with all my damage down below, just afriad will get infected, currently i am expressing. so ladies, how did you all cope with this before and after the operation?

Hey Poorfluffycat,
Your period (if it comes soon... mine took a fair while to return once I stopped breastfeeding) shouldn't cause infection in itself. If you haven't had infection issues to date, I would hope you don't start having any whether or not you get your period back. I got my period the day after my operation! And it was no problem at all to be honest. Obviously I was stressing in case I was bleeding from the op and not noticing, but it was completely fine. Bear in mind (if/when you're having internal exams) that your bits are super sensitive if you're breast feeding. My gynae said it's like examining an old woman, as there's hardly any natural lubrication. Just what you need when you're traumnatised, eh?!!
I don't envy you having to decide where to have your procedure. However I guess all surgeons have to start somewhere and if you like her and trust her then that's half the battle in my opinion. As has been described on this thread, even the most experienced surgeons don't get this procedure right first time.
Take care and keep posting!

Thanks a lot, Cyee. It's very helpful. I really hope whatever the decision is, it will be the right one. You take care!

Hello all. I haven't been on because I've been in hospital again I'm afraid. Last Thursday, I passed a bit of poo the wrong way so went straight back to hospital where my consultant admitted me as an emergency surgical patient to have a stoma. After being starved and cancelled all day Friday and over weekend, I finally had the colostomy on Monday.

It's really not as bad as I thought it was going to be although clearly it's early days. I don't know how the repair has been affected as my consultant went abroad the day after he admitted me but his registrar was there for both procedures and seems to think that it's still healing so it's just a waiting game.

Anyway, I need a good long rest so I'll check back in in a couple of days...

Oh imnotalone - (((((BIG HUGS)))) to you!!!!

Hugs Imnotalone. How are you feeling? Have you got a stoma nurse? Did I mention ostomyland before? There's a forum at www.ostomyland.com/ostomyboard/ which should have a link to the ostomy lifestyle guide, which is a realy good guide to get you going.

Don't hesitate to keep speaking to your stoma nurse if you are getting leaks, or itching, or something is uncomfortable. If you have sensitive skin you can use both a wipe (I use cavilon) on your skin before you put on your pouch, and a spray to remove (I use appeel).

Do you have to pay for your prescriptions? Or have you been signed off for free ones? If you pay, you do need to get a pre-payment card asap.

I'm here if you have any questions. My stoma is now a year and six days old and I never wished it happy birthday .

Imnotalone, I really hope that it's healing as the registrar said. lots of hugs.

Thanks guys.

I still have a maternity exemptions from prescriptions until Feb so that will come in handy, then I'll get a pre-pay. Because I had my procedure at Oxford, I dealt with the nurse there but my local stoma nurse hasn't made contact as yet. I spoke to them a few months ago just in case it would ever happen and they seemed really friendly so I feel quite comfortable about the support they offer.

I was given a little vanity case with the spray e.t.c in and I think I will order supplies from Salts instead of going to the chemist as it seems easier.

I do strangely feel relieved as there is no fear now. The 'worst case scenario' was to have a bag and now it's done, so I know there is nothing else that can be done to help the healing process. Hopefully it will be temporary but already it's just a way of life.

Thanks for the web link, I'll have a look now...

Imnotalone

Sorry to hear about your emergency surgery. Get yourself on Ostomyland as ThingOne suggested, I still go one there now even though I don't have a stoma anymore, very helpful and caring people on there. If you have a decent stoma nurse they should recommend that you don't pay perscriptions anyway as (and I sincerely hope this is not the case with you) they say temporary ostomy doesn't mean anything and they treat it as permanent until reversed. I never paid perscriptions charges for mine. Apeel spray is a must and get free samples of bags from all the suppliers on the web to find what suits you. Hope you heal soon. X

TMI Alert!

A question for those who have had sphincter repair surgery, do you ever get constipation and how do you deal with it?. I find it slightly ironic that after having surgery for incontinence, I know can end up with the opposite problem. It seems that due to the surgery, I am unable to pass anything remotely firm without the aid of Movicol or suppositories. It is not something that was ever a problem before, anyone else have this?.

Hi All,

Imnotalone - SO sorry to hear about the op. But glad you are feeling ok about it. I know what you mean about 'what's the worst thing that can happen?'... Hope you heal well and get great care.

Hi ThingOne - how's your treatment going?

4Jen - For a few months after the surgery I had these problems and did keep taking lactulose for some time. Otherwise I am probably superaware of fibre in my diet and drinking gallons of water, but don't know it that's the reason I haven't had many problems. I can't remember how long ago your surgery was though. My physio said that it takes months and months for your bowel to recover, much longer than the superficial work has healed. It might be that the repair has made the opening smaller than a standard stool and that anything other than very soft gets a bit stuck? Have you spoken to your GP?
Hope you get some answers/support for this as it's really horrible, isn't it? And yes, very ironic.

Take care all and if I'm not on have a really lovely Christmas.

My bloods weren't good enough for chemo last week, so it's been postponed until 31st, then four more after that. I think they may have got on top of the worst of the sickness but it's still horrible!

And I need to push for a date for my whatever-it-is-fistula-thingy repair. They're planning it but I want it asap after my chemo which ends early March if all goes well.

Hi everyone. Despite the sh**t time we've all had this year... Merry Christmas!! I really hope that 2009 is a better year for us all. x

Merry Christmas everyone!
I have a couple of sphincter questions but will save them for after Christmas... feeling a bit for posting them because they are nothing compared to what the rest of you are going through - but this is the only thread where I feel I could ask... anyway... have a lovely couple of days all!
Big Christmas smooches!

Blimey Jacks...mama that's why this site is here! You should post your questions if you have things troubling you.

Well imnotalone, compared to your colostomy my sphincter issues are nothing... I think that really puts it in perspective, that I could simply not have a sphincter... but here goes:
Jackbaby's birth was simply rotten. He was in there crooked, and they knew that from the first internal exam. Cue letting me go 36 hours in labour with 4 hours of pushing, then forceps delivery with definitely 2nd degree tear, possibly 3rd degree internally, and loss of lakes of blood, necessitating a stay in the special care unit after he was delivered, and a transfusion two days later when my cowbag of a midwife finally realized that my haemoglobin kept dropping (I hate her, I hate her... anyway - that more properly belongs on the Birth Trauma Support Thread).
In the first few months post-partum I had lots of urinary and occasional faecal incontinence. The faecal incontinence was not with solid stool (except that when I felt I had to go, I could NOT delay!!) but rather with the occasional unexplained episode of diarrhoea. There were a few times when I soiled myself and/ or was afraid to leave the house in case of accidents. I also had loss of sphicter sensation. I had only the vaguest sense that I had to poo, and (sorry, TMI) could not really feel any poo coming out of me. Also had that "incomplete evacuation" feeling lots. saw a pelvic floor physio, which helped with the urinary continence.
Jackbaby is now 10 1/2 months old, and most of the time I'm ok. I'm scheduled for a resection of my internal scar beginning Feb (and I'm scared of that... but hoping that at least sex will be something other than a painful thing I make myself do because I love my husband). But oocasionally, when something's upset my stomach and have loose bowels, I don't feel I have good sphincter control and then I again don't want to leave he house.
Question: will I ever get complete control back? How long does it take? It's been almost a year. The OP I'm scheduled for is not for the sphincter, it's just to resect the scar in my vagina from the tear which causes me pain almost every day and especially with sex.

Hi ThingOne and everyone else, TO just told me about this thread after I posted the following in general health:

OK, here goes. This is a bit horrible, and very embarrassing, but I really need advice.

Since having my lo I have very occasional episodes of faecal incontinence. (it's been checked and they can't find anything significant but have recommended a c-section next time to be safe)

Anyway, it happened the day before yesterday, in the middle of a motorway traffic jam (nightmare) so it was a while before I could sort myself out. The problem is I think some went up my vagina (I've had slightly funny bits of discharge on and off since). Not great at the best of times but we are ttc and so it's possible I'm just pregnant (bit too early to test but perfectly possible - will know in a few days.)

So now I'm panicking - I know vagina is self-cleaning etc but this can't be good. What should I do? The really stupid thing is I was at the doctor today about something else and ended up being too embarrassed to ask feel stupid about that now it's after hours and I'm getting really worried. Can see myself heading for a sleepless night.

OK i've plucked up a lot of courage to post this, hope someone can help. Thank you.

That was my post, had some reassuring replies but thought i'd come and say hi here too. I had a long labour (27 hours followed by 3 and half unsuccessful pushing, followed by ventouse, episiotomy and tear. I already had some issues with an overactive bladder but it went mad after the birth and I had a catheter for six weeks and then pretty bad incontinence. Now 18 months on it's up and down. The bowels are a more occasional problem - probably twice in close succession about every 8 weeks.

Would you have a c-section next time if you were me???

ps, also my wind is just EMBARRASSING these days. God. and the other thing to add is i'm convinced my pelvic floor damage was in childbirth and not during pg - they still seemed pretty strong at end of pg, and trashed after giving birth. they're 3 and a half now, which isn't bad. they were 1 at one point. (out of 5)

Jacks...mama, I'm really sorry but after encouraging you to post, I can't help!! It sounds mad to call myself lucky but I never had any problems with sphincter control as despite everything, the muscles were still good. I never had any embarassing moments, just leaking stools and wind via my vagina.

If I were you, I'd definitely try to get a referral for physio as they can really help with muscle control and might be able to refer you onwards if it's more than they can deal with. Are you doing bum exercises? (like pelvic floor but concentrating on closing your rectum instead?). They helped me with the urgency I felt after the 2nd Op. I did 8 sets of holding for 8 seconds then 10 sets of very quick tightening about 6-8 times a day.

Swingsandrounabouts, my advice for what it's worth is the same for you. It could really help and another pregnancy will only weaken the pelvic floor muscles further. So it could really benefit to see a physio. My honest opinion about a CS is definitely!! I personally don't feel any grief that I ended up having one and would not ever consider trying to give birth naturally again and go through the same risks, not only to be but my baby. However, I understand that not all people feel that way and it means a lot to give birth naturally.

Hi Imnotalone, oh well, not to worry, maybe someone else will see my post and will have some useful advice. I did go see a pelvic floor physio and she helped lots, but in the end she took me as far as she could and the problem still persist. We'll see what the OP does in Feb. But thanks!!

Swings, if I were you I would definitely have a C-section for #2!! Now, about your current problem, I don't know what you call it in the U.K., here we call it douching (using a cleansing fluid inside the vagina, they come pre-made at the chemist's or you can make your own). That's what I would do - a mild vinegar and water solution, and rinse myself out very thoroughly!! I do know that's not recommended when you're pregnant, but it seems to me that having bits of poo in there is a bit worse, and besides, if you are in fact pregnant, even if you're only five mintes along, so to speak, your cervix will have a nice little plug in it already to prevent anything going in there, that happens pretty quickly.
I won't be able to check in again until tomorrow night, so good luck!!!

Jacksmama and Swings

Have you both had an anal ultrasound scan and physiology(sp?) tests?, this will show any damage to the sphincter and how well the muscle is working. My surgeon told me that another pregnancy would not cause further damage but another vaginal birth would, I shall be having a C/S next time.

Cyee, Thanks for your earlier reply. The problem is definately a smaller opening following surgery just wondered how others were dealing with it.