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))

[Jacksmama]

You're so welcome. I am eternally grateful to Cyee for starting this thread, it saved my sanity on a few occasions,
For what it's worth, we still co-sleep but that doesn't stop me from having a glass of wine or two. That's not enough to make me drunk, and I don't sleep well enough to ever be under fathoms deep so I'd roll over on DS. I really think co-sleeping means that 10% of your awareness if constantly with your baby. So... have some wine. Or come over to The Tea Room and have some virtual wine.
More ((((((((((HUGS)))))))))!!!

[Cyee]

Oh my what am awful day you have had. What a total and utter witch! I am so so angry at what happened today. Your mum is a total legend. It makes me so cross - I mean, you shouldn't need to have your wonderful mum there to make sure you get treatment.

When this is done and dusted and if you're up to it I would send a letter to her/her boss. I think it's outrageous.

That said... she is not a colorectal specialist which means we care not what piffle she comes out with. So I know you're down... (I left my first appointment bawling my eyes out).. but you're not out. And you deserve a good one this time.

I am truly flabbergasted. What a horrible woman.

[DMCT]

"but its what anyone wants to do about it"
"I'm not sure what we can do about it"

They are bloody idiots, FIX IT might have been the term to use there. Try not to worry about it, I know thats easier said than done. The colorectal surgeon will sort it out and retore your faith in life and what not. Plus I think i balled my eyes with every consultant I saw....on more than one occasion. I was a snivelling wreck for a long time. One gynae consultant said - give it time, physio will help...not really when you have practically no muscle there at all. But the consultants I finally had my op with, gynae and colorectal were really good, understanding and efficient and it worked. TG>

You will get sorted, make sure and take your mum/somebody to your next app, my husband did most of the pushing with consultants/docs etc as I really wwasn't mentally able for it at the time. (I wasnt a nutcase or anything, just traumatised)

Good luck, drink lots of wine in the meantime, I had a 4th degree tear and I'm nearly 100% sorted (also 31 - well on Sunday), that is of course apart from the bedroom situ , but i'll get there eventually..

[DMCT]

Hullabalulu, that last post was for you , \God I do go on a bit when I GET GOING, SORRY

[BexieID]

I haven't read the whole thread but I had a 3rd degree tear when I had Tom in April 2006. My waters broke at 5am and i'd had him by 9:22am. There was a sense of urgency in the air as there were quite a few people in the room and forceps were mentioned and I kinda went for it, which I realise now was stupid.

Anyway, i'm 12 weeks pregnant with DC2 and my consultant has said it would be probably wise to have an elective section at 39 weeks. My BMI is 47, so I have all that extra weight against me for recovery. I'm really annoyed as I never really had any aftercare and no one mentioned that it may not be wise to have another VB again. It really would have given me a kick up the backside to loose weight!

My recovery wasn't too bad, except for not having a bowel movement for 6 days then suddenly exploding! Having to take that retched fibogel stuff. I wouldn't say I felt 100% though down there though.

[kentmumtj]

thanks jacksmama i have just spent some time reading on that........... i guess another docs visit is due..........im really really fed up with it i wish i had never had the op it was such a mistake and i am regretting it big time at the moment.........its so unfair i just want a normal life with my dh and its just not possible

[Cyee]

Kentmumj - sorry you are feeling low. Woeth getting the doc to have a look with Jacksmama's info in mind. How annoying if you've been suffering through something that was linked but not completely to the op.

It's wretched and stressful when you can't have a normal sex life. I was completely stressed out about it... convinced my DH was up to no good (think I actually made him question his manliness because I went on so much about it, yet he was being his normal marvellous self!). Hang in there.

Welcome BexieD - really sorry to hear about your experience. That's so frustrating to be given that 12 weeks into your pregnancy! Most ladies on here have also been recommended to have an elective c-section, but might be worth getting a second opinion because I've also heard of plenty of people who have had VB's after tears... though you don't say if you had to have surgery etc.? So far it seems it's the surgery folks that are being encouraged to have E-CS... Congrats on your pregnancy though and welcome to the thread!

[Cyee]

And another thing...

Seriously - what ARE we going to call the next thread??? Need something informative, not too off-putting (Sphincter anyone?! - though didn't put you lot off!)

I am up for Pervwatch... with some helpful information afterwords (ie we are not trolls perving on ladies talking about fanjos!).

Hope you're all ok.

[DMCT]

Hi Cyee,

Yea I think the nxt thread has to be something informative - because when it happens to you, you generally type things like sphincter injury; 3rd/4th degree tear; fistula; etc into search engines. And in general you're not up to any hotstuff in the bedroom dept at that particular time.

But you guys could also have yer perv watch aswell - to keep ye giggling!!!

Having a bbq at w'end for me bday, but NI weather is pi**ing it down at the moment -joy. I'm sure the champers will brighten my day though.

Have a good week..

[HullabaLuLu]

DMCT, Cyee & Jacksmama thank you. I am to report further developments. I went to meet another mum for lunch and in the middle of Debenhams I suffered an episode of faecal incontinence. Not like the other though, this was liquid!!! . I don't think it was diarrhea - I feel fine and had nothing since.

I was mortified, called dh to leave work & pick us up and then I had to leave dd with my friend while I went to the loo, put my underwear in a nappy sack, put one of dds nappies where my underwear should be and tied my coat around my waist.

I've called my consultants secretary and she has added it as a ps to my colorectal referral letter and asked for an urgent opinion.

I don't know else to say. I think I am in shock.

[MamaBL]

Hi to everyone, I checked in a couple of months ago when i found this thread (which has been so greatthank you) but haven't been able to read or post much as i hardly ever get on the computer so sorry to be a quiet but very interested member of this group :-} anyway i just got out of hospital yesterday after having 2nd go attempt at a 4th degree tear repair, they've attached a colostomy bag this time to help the repair and i really hope it'll work. i'm getting used to it but it's been a bit of a journey to get there. Anyway my question was about payment for all the supplies - they waited till the surgery was over the thing actually attached before mentioning how unbelievably expensive all the bags etc are (90 quid per box and i'll probably need 2 boxes a month they said !!!) i wondered if anyone else has a bag and if they have to pay for this themselves ? thanks for any advise on this or bags in general
thanks so much bxx

[HullabaLuLu]

Hi MamaBL, we haven't met but I am so shocked by your post.

Do you live in the UK? Shouldn't these supplies be provided by the NHS or are they likened to prescription charges? How long do you have to wear the colostomy bag for?

You sound like you've been through an awful lot and I don't have anything to say to help you but am very shocked.

I hope you are recovering well.

[Jacksmama]

lulu - just a quick (((((((((((((((((HUG))))))))))))) - I feel so for you. I have never had as many upset tummies as I did after DS was born, and there was many a time when I didn't make it to the toilet in time. One memorable night there was a five foot trail of poo to the toilet - that was probably the lowest and most awful I've felt in a long time. I wish I'd known about this thread last summer - the worst was not being able to tell anyone who would understand and sympathize (rather than be uncomfortable with TMI and disgusted).

MamaBL - my MIL has a bag and she has to pay for her own supplies. I think that's horrible. I hope this works for you.

I think we should call the next thread "Continuing Support for Sphincter injuries, Fistulae and Ragged Ladybits" and mention the Pervwatch in the opening post so people are warned about "no TMI" etc.

[kentmumtj]

i agree with the title good idea jacksmama

im confused with the info i read as i didnt have any problems with my sex life before my operation so think it has to be linked to it.

mamabl ....... my heart really goes out to you and to have to pay for them well thats awful imo

[BexieID]

Oops, would help, yes I got wheeled into theatre and had a spinal and got stitched up. I remember there were loads of people in the room, lol. The anaethestist was a lovely German guy that chatted to me the whole time. It only took them about an hour and my DP arrived after a 7 hr drive down from Scotland just after I got back to the delivery room, which was nice.

I spoke to my mum today and she just said that she wouldn't want to be left incontinent. But it doesn't mean I would be. Grr, hate having to make decisions!

[ThingOne]

Sorry not been around for a bit - I've upgraded my browser (haha) and I can't click on individual topics, only active convos and I'm on. And I'm going on holiday for a week tomorrow!

Hullabalulu, sorry you've been through all this. It does sound shite.

MamaBL. If you have a permanent colostomy like me you get all your prescriptions free for ever. If you have a temporary one you don't. Some stoma nurses are nice and write permanent by mistake on your form, on the grounds that it may be permanent.

What you need to do is to apply for an annual prescription card, which costs around £100. This will cover all the costs of your colostomy bags. I use the ones that are £90 a box too. I hate to think how much I cost my surgery.

If you are otherwise fit and healthy you may be able to irrigate it rather than walk around with a bag of poo on your tummy. Please call the stoma nurses at your hospital and they will help you out. If you're not well yet they can come and see you at home, you can go to see them at hospital or you can talk to them on the phone.

When I first got mine I found lots of useful information on ostomyland. There's a good lifestyle guide there. You can also try the colostomy association.

Anything else you want to know, do ask.

[Cyee]

Hullabalulu - for you. Like Jacksmama... I also have been there and I remember feeling totally and utterly wretched and dirty and embarrassed and out of control. Awful ((((HUGS))))

MamaBL I cannot believe you have to pay? Sounds like madness. If you discover you do have to pay, then I know there are various schemes/cards that bring down the cost if you need regular prescriptions. Really hope the op works out for you this time

Kentmumj - you sound really down. Hope you're ok. It really sucks about your sex life. Get ye to the doctor and see what they have to say. Don't be ruling things in or out based on t'internet.

BexieID I don't envy you - really tough call.

Great thread title Jacksmama - I'll try and keep an eye on it, but if it's not me, whoever finishes this thread off sets up the new one - ok? Last one out turns out the lights

Take care all

[Cyee]

ThingOne! Nice to see you. I was about to volunteer you for the ostomy info but suspected you'd come to the rescue

Have a wonderful holiday!

[MamaBL]

Hi
thanks so much for all the info, thats been so useful. I've got a temp bag hopefully only a couple of months. I've arranged a call with my doc tomorrow to see if they will cover the charges otherwise i'll do the annual payment - i had heard about them but didn't know how much they were so thanks thats def worth it.
bxx

[jmontan27]

Hello everyone

I've been trying to get back onto this thread for ages, but everytime I try to read the thread or post a message, my computer crashes! I think because the thread so large now , my rubbish internet connection has trouble keeping up with it! Anyway, I'm trying again...

Firstly, congratulations Cyee - I'm so pleased to read you news . However, not so nice to see that lots of people are still suffering (really feel for you Kentmumtj. This is what I dread about surgery, that it will just lead to other things).

I finally went to my doctor this week (7 months post partum) and said I didn't want to be examined but told him I suspected I had a fistula as was passing wind vaginally and had one episode of diarrhoea that came out the wrong way (3 months ago). He said he thought it was highly unlikely I had a fistula because if I had I would be suffering serious symptoms by now like an "ascending uterine infection". For God's sake, everyone who I have spoken to about this has made it sound like a death sentence (I also suffer health anxiety). He suggested the practice nurse examine me and then report back to him (there's no female GP in our surgery).

Basically, I could see that he just doesn't believe that I could have a fistula. He said he would be very surprised if I did. Why is it so hard to believe? I gave birth to a baby with a head circumferance off the scale and had a forceps delivery. I don't know. I don't want surgery as my only symptoms are the occasional passing of wind vaginally. I seem to take so long to heal in that area that I know that if I did have an op something else would go wrong or I'd get an infection or something. Is there anyone who's not had an operation for this?

[MamaBL]

Hi jmontan27
i'm really sorry to hear your doctor has been so terribly insensitive and umprofessional, unfortunately it's a story i've heard from a number of friends with the same problem - i think it's much more common than anyone realises. i do have a friend who like you suffers with wind from the wrong place and pain from a scar and she isn't really planning to have an op, i can understand why you might want to do that. i hope you get some better care - i'd swap doctors if i were you
bx

[Cyee]

Hey JMontan27... almost my bed time but wanted to post a quick reply. There is MASSIVE ignorance about fistulae. I faced similar scepticism when I went to the doc... well... you know fistula only happen in developing countries, don't you?
What an idiot.

Hope it goes without saying that it's absolutely not a death sentence. And I had my fistula for nearly a year and didn't have one infection, no antibiotics.

Fistulae generally don't heal by themselves because they're generally in an area where there's a fair amount of traffic, but I would get referred, examined and see what they say/what you think? You don't have to commit to anything, but definitely worth finding out your options.

Yes fistulae are rare (way less than 1% of births), but clearly not so rare that colotrectal surgeons aren't expert at fixing them... GRRRRR at your doc's response.

[jmontan27]

Thanks MamaBL. The way this subject is brushed under the carpet or not acknowledged to be a problem by some GPs really irritates me. I'm sure for every person that does mention it, there must be more who do just suffer in silence, and who can blame them if they're going to be treated like that. Can I ask whether your friend ever sought medical advice, or whether it is just something she has chosen to live with?

[jmontan27]

Cyee, my last post must have crossed with yours! My GP said that not only would a fisula never get better of its own accord, but that it would get progressively worse. This is not something that I've experienced. And the fact that you had your fistula for nearly a year without any infections just goes to show how much ignorance there is about this. Anyway, thanks for the reassurance - hope you sleep well!

[MamaBL]

Hi my friend has been for investigations that have been inconclusive she's felt like she's had to push to be taken seriously all the way which is not nice when you're dealing with such a sensitive subject and probably just want to bury your head in the sand. i think she's reached the stage where she's just going to leave it as it's just wind and doesn't seem to bother her. she has more bother from pain which i think is to do with scar tissue ( i have the same)
i also lived with a fistula for over a year (son is 19 months now ) and haven't really had any bother (except embarrassing wind and messy stuff that i seemed to get used to - but thats the scarey part - what you can let yourself get used to !) my prof seemed to believe howeverthat these things can heal themselves - but then he also told me he doesn't believe in pelvic floor exercises so who knows haha
hope you feel better soon
bxx