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))

sawyer i had sudden bleeding and had to go to the hospital thats when they discovered i had an infection, ring up the ward for advice first thats what i did. and surely you must have you appointmnet booked very soon to see the consultant mines 9th april.

and yes it was a little bit silly of me to jump off the wall. i didnt actually go ot in the garden with that in mind just that my garden is on different levels and my washing line is on a higher one. I was being lazy and instead of walking to the end and down the slope i jumped off the wall. trust me i wont be so silly again. think i must have just pulled or twisted something dunno really but DH has banned me from hanging out washing.

I wasn't given any follow-up appointment at all.

I haven't seen any doctor since I came home,apart from an Out of hours doc,who had a quick look,but didn't touch me as I was reluctant to be examined.

We have probably all done stuff we shouldn't.I have been lifting DD2 (2) very occasionally,but sometimes I have no choice. She's very good really,she climbs into her Car Seat and her Cot by herself.

I shall ring the ward for advice.Thanks for yours.

very quick one from me for Sawyer to say that I was told I'd be having some kind of follow up but they didn't contact me for an appointment for ages and I ended up seeing the consultant's junior colleague about 5 months after the op... Not ideal but in fairness I know they'd have seen me if I'd have been having any problems.

I did ask when I was leaving if i needed a letter for GP etc. and they said i didn't need anything.

Maybe they just send an appointment later then.

thats very odd as i have been seeing my Gp every 2 weeks and was sent my 6 weeks appointment with the consultant/surgeon days after my op.

otherwise how will you know it is all healed as it should very odd if i were you i would def ring them.

i attempted to drive today with a large padded cushion. stillhurts too much so will leave another 4 days before trying to drive again

Hi to you all, I'm new to MN and have been reading through this thread, haven't managed to read the whole thing yet but i'm really pleased to meet you all. I had a 4th degree tear 16 months ago which didn't heal and developed a fistula which i had surgery to repair in october - this didn't work so i'm heading back in june for another go this time i have to have a colostomy bag to help the healing which i'm not really looking forward to. I've found reading all your posts so helpful and a real comfort. i think this experience really affected how i felt for ages after giving birth, emotionally and physically it's been quite hard to recover from. I'm feeling so much better now but finding somewhere to talk about it is fantatsic especially with so much surgery still to go.
hope to chat soon

Hi MamaBL, and welcome to this thread! We're sorry you had to find us but glad you did, if that makes sense.

I hope you got to the part in the thread where it says "there is no such thing as TMI (too much information) here" because we mean that. I've personally talked about things affecting me on this thread that I would never in a million years mention to my RL (real life) friends. Probably everyone has. So if you have any questions, bring'em on!!

(It's probably more appropriately Cyee's job to welcome you, since she started this thread [grateful emoticon], but since I saw your post, I just wanted to jump in and say hi.)

Haha Welcome MamaBL! I may have started this thread but it's a true community enterprise. The community of sore arses I like to think... though that's perhaps too much for a Monday morning

Bring on the questions indeed - it's why we're all here. Sorry to hear that repairs to date haven't worked. There are a few ladies on this thread who've either had a colostomy bag pre-op or have a permanent one, so hopefully they'll be able to help with any questions you have.

Take care of yourself and keep coming on here to post

must say im sore front and back hmmm do i get extra points fro that lol

Hi mamaBL. I haven't been on for a while so just catching up and have seen your post. I've had 2 failed repairs for a fistula caused by forceps during my sons birth just over a year ago. After the 2nd repair in December 2008, I had a temp colostomy. I had also been dreading but I can honestly say, it beats having to deal with poo coming the wrong way every time I had one.

Yes it does change your life but it is very manageable and it hasn't stopped me doing a thing. I started running again at the end of Jan and noone would ever guess it's there. I was recommended www.ostomyland.com/ostomyboard/ by Thingone and I have found it a great source of help. There a few others just like us which makes it so less lonely...

I'll catch up on the other posts later...Hope you're all o.k.

Running? Imnotalone you're a legend! I confess I have been such a lazy bones since my daughter was born. Have just splashed out on a treadmill so hope that makes s difference (ie I shrink!).
Great to see you on here again - what's the next step for you in terms of repairs? Take care.

Kentmumtj you do get extra points for that

but i dont want them lol

am off to see doc tomorrow morning and am wondering what she will say about whether i can go back to work or not.
Must say the thought of spending a whole day at my work place is filling me with dread for some reason.

Could you go half-days for a while? That's what I did when I went back to work.

Hiya everyone, thanks for the warm welcome, i'm delighted to have somewhere to come with all my questions - so far i think i've done a great job of putting it all out of my mind in a denial type way - last night was the fist time i goggled it and thats how i found my way to you all - result ! i think i am a wee bit worried about the bag but i hope it's one of those things thats a "bummer " (sorry ) to get used to but once you do it's ok. i'm glad to hear you can go running with it. have you been able to swim at all ? i think i'll have more questions once i've actually accepted that it's happening but i'm sure it'll all be ok.
i'm not always on the pc regularly so i might be a bit sparodic with replies.
hope to chat to you all soon
xx

Hi MamaBL. I have a permanent colostomy. Feel free to make as many shit jokes as you like!

I've had mine for 15 months following surgery for cancer. Obviously it's not what you would wish for but you can live a normal life with it. You have to make some practical adjustments but they aren't generally life-changing.

You can swim with a colostomy and do all kinds of sport. But don't do sit ups until/unless you are told you can as your stomach muscles can be weak and there is a risk of a hernia. This is a parastomal hernia, given the hole in your tummy is known as a stoma, and those who have them known as ostomates. This should help your googling.

As well as ostomyland, you could try ringing the stoma nurses at your hospital.

Hi guy's sorry not got time to read whole thread..

Poor you BTW thingone

I had a 3rd degree tear with Dd 3 years ago and I'm 25 wks pregnant now. I have finally decided after much deliberation to have a planned section this time as found out a few eeks ago that the tear was half a cm away fromleaving me with a colostomy bag. DD was 7.5lbs and i was fully dilated and had reallt controlled pushing and hse came out the right way and with no limbs sticking out my her head...basically there is nothing I could do differently next time except hope a MW would give me an episotomy if it looked likey I would tear although this never happened last time and an elective episotomy isn't even guaranteed to stop a bad tear.

I just don't want to risk any further damage to my bum!

Good for you Gillyan. I'm sure the decision didn't come easily, but now you can relax and know that at least your bottom will be ok after you have this babe!

Hi guys

just wondering if Solo came back with any news of her Cleo experience.

I have things that need dealing with but the idea of surgery scares me more than living like this for the next 50 years.

sorry for the hijack

hello all

have just spent the past 3 hours reading this thread all the way through! Very helpful and important thread. (My own experience was nothing compared to yours - 3rd degree tear plus mild rectocele - but was looking for info to help me choose re delivery choice - vb vs CS of number two in July).

But having read the thread through I would like to encourage Cyee in her idea to establish some sort of web resource with summaries of some of your experiences on it... I was supposed to be working this afternoon but became quite engrossed. Not often you come across such honest and useful discussion. Thank-you all for contributing. There is too much silence about the complications from childbirth.

Hi drr - welcome!
Have you come to any sort of decision from reading all our TMI?

Hi
Thanks for theinfo Thingone, sorry to hear about your experiences. i agree that a permenant discussion board for this would be great, it's a fantatsic source of info, it can all be a bit intimidating and i never thing of the right questions to ask when i'm actually infront of the docs.

feels even stranger with the new post created on just posterior repairs i feel torn where to write lol

i went back to see my doc yesterday and he examined me very very gently thank goodness. He said i was still very sore, swollen and infected..........great........this is the reason i am still unable to sit down. Am now on my 2nd lot of antibiotics and they seem to be upsetting my tummy. here goes TMI lol at least when im opening my bowels at the moment im not to scared due to the consitency oppps sorry guys.

Anyways he's told me i cant go back to work yet as he wants this infection cleared up first. So he has signed me off work for another 2 weeks and i couldnt belive it but i have to go back next week to check progress. He said the infection is hindering the healing.

I also spoke to him about my erm er erm problem that i can not 'hold in' and have to 'go' to the toilet rather quickly when i feel the urge to open my bowels. He told me the op may have damaged the muscles in my rectum and will need further investigation.

Great............

Hi drr i agree this is a very taboo subject and i had my op without asking to many questions due to embarrasement. I have one very good friend who i have managed to speak to but she also agrees it can be uncomfortable to actually speak the problems so much easier writing them on here lol.

drr in was offered the op i have just had done 15 years ago following the birth of my 2nd dd however i was told i would not be able to have a vaginal delivery if i went ahead with it. I chose not to have the op as i had not finished having my children.

2 more kids and a few years later here i am now

im surprised you have been given the option?

Blimey, things are really getting going on here now!!

Thanks for the welcome back Cyee, I will try and visit more often! I'm on a waiting list now for my 3rd repair. I had some more physiology tests a couple of weeks ago to see if there is any scar tisue that can be pulled into the fistula. The consultant seems optomistic that it will all be fixed eventually...

I'm glad people are finding this forum more easily now.

Thanks for the welcome Jacksmama!

Kentmum - I haven't been offered any options yet! My rectocele is only mild (physio and better diet helped) and doesnt need surgical repair. But I am worried that labour will make the rectocele worse. Am also worried about tearing badly again during second labour. I cant find any info/data to help me make informed choices.

What was your experience? Did your rectocele get worse with subsequent labours?

I probably have a rose tinted view of elective caesarians, but at the mo CS seems a better choice than risking another tear and rectocele getting worse. I was so angry after DS birth that no-one in any of my antenatal classes had even mentioned tears or any 'things that can go wrong' scenarios. I felt tremendously isolated/ ignorant for months after the birth. The midwifes did not know enough to help me (or even examine me properly). After a while I felt more comfortable about mentioning my tear to others and - surprise, surprise - it turns out that at least 3 other women I knew had also had 3rd degree tears. There needs to be better sources of information so that when you leave the hospital with your lovely baby and your wrecked body, you have good info to be able to follow through on problems, questions etc. Thanks goodness for the internet!

Lots of what Cyee said much earlier in this thread rings bells with me. I think I have a genetic/physiological propensity to damage and would like to learn from the lessons of my 1st labour rather than risk making longer term probs for myself. My mum lost her continence by 65 and I wonder if she had undiagnosed tears/prolapses with her labours...