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))

Oh DMCT - I so so feel for you, I really do! I also had the recon jobby - something about lengthening my anal canal?! Honestly, the water and lactulose really helped me. My GP pal also recommended that I take something like Movicol which is gentle (no explosions) and works in a different way to lactulose. Maybe this is the same as fybogel/senocot? Oh I reeeeally feel for you. Suppository and enema after your op.... oh words don't describe...

The first 2 weeks were the worst for me and then it was a bit up and down.

What painkillers are you on? They had me on codeine for a few days before some bright spark realised they have a constipating effect. Doh!!!

Take care of yourself - you will feel SO much better very very soon.

x

Bump!

Hi Cyee,

Starting to feel a bit better, had to go back to hosapital last week and was losing alot of b;lood, but ok now.

Drugs - was on codine after first repair, in the hospital i was on tramil/tramadol & paracewtamol(which i think are a waste of space) and ibruprofin (sorry about the spelling). Now on diclofeinic and paracetamol and antibiotics. After my constipated day I am afraid to take aything strong and would prefer to be in pain than go through a day like that again!!!!

I have to go back on Tuesday for follow up - on my discharge note it says suture removal - and I am beginning to feel sick - i thought they were disolvable - I hope to god they are otherwize they'll have to knock me out. Im afraid to ring and ask in case to say - Yes you have to get them out! Did you have to get your stiches removed?? After the first repair they used disolving ones.

Anyway better go and have a glass of water! And maybe I'll build up the courage to ring and ask. Hope you are well and chat soon.

Hi Cyee

I'm due on 8th January so I'm just halfway through. Am beginning to panic about the financial side of being on maternity leave and having two kids but should have thought of that sooner!

Hi there DMCT an FiBee (and anyone else!),

DMCT - my sutures dissolved... hope yours have too and they maybe just want to check you out? If there are any to remove I imagine they'd be on the surface so maybe not as horrible as you might think (can you tell I'm trying desperately hard to be optimistic here?!!). If it was invasive, surely they'd knock you out/let you know in advance. Sounds like we were on the same drugs programme. Those tramadol are funny old things aren't they? Hope your bowels are behaving themselves. Sorry to hear about the blood loss.. sounds scary. Sounds like you are being a right trooper. I can't believe you are having to go through all this so soon after the birth - I was struggling through mine and LO was nearly 1!

FiBee - know what you mean about the financial worries!! Hope you get them sorted. It's especially difficult at the moment with all the doom and gloom about the economy as well. Hope the pregnancy continues to progress well!

From my side, all well. Still bit slack when it comes to my pelvic floor exercises. Spoke briefly to my GP friend who assures me that few people post-birth or even just those who're a bit older have 100% fart control (sorry for less than gracious description!). I have my follow up with the consultant towards the end of Sept, and I have a long long list of questions for him.

Anyway, more importantly I'm in lovely lovely Ireland for a long weekend. Yey!

Hope you're all ok. Enjoy the bank holiday weekend and fingers crossed for nice weather.

Where in Ireland are you?
Im Irish...
Have a good one and have a pint of the black stuff for me xx

Hi DMCT - how are you doing? I'm in Derry/Donegal this weekend - I'm from Derry. What about you? Weather drizzly, but black stuff more than makes up for it You should see the state of my hair though. Magheraroarty beach has ruined me

I'm from Co. Longford. My Dad's from Donegal though. Living in England for 4/5years (i've lost count) but moving back in Dec after this fiasco of a birth, shows you that it's nice to have fam round at times like these.

Anyway hope you had a good weekend!

By the way the sutures are disolving ones THANK GOD!

Great news about the sutures and I think you're the first person I've ever 'met' from Longford!

Yes you really miss not having family around when you have children and when times are tough. Thankfully my dad has been over loads, but I'm a bit jealous of your return to Ireland! I've been over here about 14 years now... gulp!!!

I'm off to bed soon... I was up past 2am every single night when I was away and am absolutely ruined! Been in bed by 9.30pm every night since I got back on Tuesday

Bump

Glad to hear you had a good weekend!
Co Longford - yep, not a bad place, nothing fantastic, but it's home (not longford town).

How long was it before you were back doing things after the op?? I went to see the colorectal specialist the other day - post op checkup and he said everything looks good and is healing well. he said it's ok to start lifting the baby (who is 5months and about 20lbs or so. havent seen the gynae consultant though and am wondering what she will say. Was you back - lowerback really sore afterwards?

Im Still in alot of pain and if i feel good i do things and then am uncomfortable for the rest of the day..... Wont take any more painkillers as I was constipated for three days and I nearly died again, same as when i was in the hospital - the pressure... i thought it would rip the stitches but thankfully after lotsa lactulose, prune juice and senocot it worked. The PAIN though was ...WORDS CANNOT DESCRIBE IT as you know.

Yea Ive been thinking we'd move back to ireland at some stage, but this has just pressed the rapid fastforward button!! I dont have a job arranged and i believe teaching jobs are few and far between in NI (we are moving perhaps to Fermanagh???! Do you know it well?) I have friends in Down and then my bro lives in North Sligo so it will be close to people. My husbands ENglish but loves Ireland so I hope it will be ok for him ther too.

Anyway my mother in law is here now looking after the lil monster - funso better go. I hope you are enjoying this lovely weather we're having, chat soon..

I've been meaning to read my way through this thread for a while but shitty things keep coming up and distracting me.

I'm gatecrashing a bit, really, as my fistula is not from childbirth. Mine is a result of cancer. I had surgery to remove a tumour around my rectum and my vagina ended up getting damaged. The surgeons thought they had done a good job, and that they'd avoided damage, so it took a while to get a diagnosis. It's not their fault - it was far more important to get the tumour out intact. I had to have my rectum and anus removed, so already have a large perineal scar.

They've had a look at it under anaesthetic and it can be mended by plastic surgery. This decision was made in March but I'm still waiting as I've had other treatment which was more pressing. Since then I've had at least one burst abscess, one of which created a sinus through my perineal scar. Sitting is uncomfortable or painful and walking more than about a mile is not fun.

I've had a succession of infections and I've now been oozing thick green pus for nearly two weeks so need to get a swab so doctors can work out what antibiotics to give me. I'm meant to be restarting chemotherapy soon but an infection like this puts that in question.

I'm finding the whole thing increasingly distressing. It's now nearly nine months and I still don't know when it will be mended (there are still apparently more pressing things!). I'm beginning to get phobic about the whole area. I picked up courage to investigate earlier this week prior to a GP appointment and I was nearly sick. I've been crying several times a day since. I can't sleep and then I am tired and incapable all day. It's really hit me for six.

I can't google as that is an absolute no-no for cancer patients. You just end up thinking you are going to die.

What on earth do you guys do for pain relief? I get some relief from codeine (at least I don't need to worry about poo!) but I'm reluctant to take it long term. I keep forgetting to ask my GP as there is always so much to talk about.

Hello ThingOne - welcome

So sorry to hear about everything that's been going on with you. Sounds like you've had a torrid time.

This is just a quickie as I'm at work, but in terms of pain relief, immediately post-op I was on Tramadol - that was the only non-paracetamol/Brufen/Codeine drug I was given.

I found the combo of para and brufen quite good (I previously didn't know you can take them together and that they work in different ways), but sounds like your pain is worse than that.

Hope they get to the bottom (sorry!) of that infection soon. I'm sure you probably just want to get cracking with the chemo.

Also - just remembered I hired one of those Valley cushions designed for perineal injury. Have you seen them? It's like a cushion plus an inflatable option and it has a valley in the middle so you're not sitting on your perineum...I also got some relief from sitting on a gym ball. Sorry if you know all this already..

Sorry this is a bit all over the place. Will get back on later.

Cyee

Bump.

Hello everyone - hope things are going ok.

DMCT - sounds like you have it all worked out and it sounds great. Fermanagh is gorgeous - I don't know it as well as Donegal etc. but what I have seen is beautiful. I spent a great weekend at Lusty Beg. I have heard teaching is a bit of a closed shop at home, as there are just so many people with the qualifications who would rather teach there than elsewhere in UK. Very different to over here! My husband is a teacher... and also English... and also loves Ireland! I hope the plans all go well.

More importantly, I hope you feel on the mend soon. With me, I was starting to get really down about my perceived slow progress after a few weeks. Then one day it was like magic and the pain was vastly reduced. My physio reckoned the bruising was the main course of my pain, not the op itself... doesn't really bear thinking about, the op and all the shoving and yanking etc. Yuck.

In terms of lower back pain, with me it felt like right at the top of my leg/bum bone. Nowhere near the op. Hence the physio thinking it was severe bruising. I'd imagine your back pain is the same - probably a result of the position you were in and the way they do their work...

In terms of doing stuff. I was off work for 4 weeks and there's no way I could have gone back before then. I expected to be absolutely fine after 2, hence feeling low when I was so debilitated. Within that 4 weeks I had quite a few good days, but I wasn't feeling consistently better until about 3.5 weeks post-op, then back at work almost exactly 4 weeks later. Once I was back at work the main thing for me was getting toileting organised. I generally hate going for a number 2 at work (I can't actually believe I am typing this) but these days I am much less reticent. In fact I think I am much more like a bloke now - natural bodily functions and all!

Lordy what an essay. I think it's time for a glass of rose in the sun. Does that make me a lush?!!

Hope everyone's well.

Hi guys,

Thingone - I was also on what Cyee was on for pain, Tramadol, codeine (co-codamol?)etc

They were good but constipating so , then took dichlofeinic (helps to reduce inflamation also)but also found it constipating. So as Cyee said above paracetamol and brufen were good. If your not concerned about the constipation side of things go for the strong ones! I really do hope things get better for you!!!

Cyee - glad to hear you are doing ok. Funny that your husband is a teacher too and English! And loves Ireland (well that's not hard!

I am over four weeks post op and am nowhere near better. they said they would hopw me to get back to work after the october half term. But Ill have to review when it gets closer. Considering a walk round the block wipes me out - it may be wishful thinking.

Anyway motherinlaw gone home and now brother here to help. I will laugh about this one day! HAve a good week.

Just a quickie before bed to say hello DMCT You need to remember I was 10/11 months post-birth when I had my op. I think that made a huge difference. You are much closer to the birth so I would completely expect you to feel zonked, especially with a younger baby and physically I don't think you'd even have recovered from the birth properly, never mind additional 'work'.

Take care and I really hope you feel better soon!

C
PS you will laugh about this some day!

Feeling a bit brighter about my prospects now, thanks. It's been agreed I'm to go pronto to the surgeon and I have an appointment next Friday. I suppose it'll be a case of how soon the plastics team (which I think only visits our hospital) can deal with me. I'm going to say I'm prepared to go to either of the big towns near us if that can make things happen sooner.

So what do I need to ask about surgery? My fistula is low down and I think it's quite big. I can put my finger through it easily - it was doing this that really freaked me out.

Glad to know how long post op I need to expect for recovery. It does help to know or you do get so downhearted. Because I was expecting lots of chemo and my DH really needs to spend more time working than looking after the kids, we've got full time nannies from Monday which will help deal with not being able to do the school run for a bit.

Hope you feel better soon DMCT. Are you making sure you eat properly/aren't anaemic and so on? Eating your greens ?

Hello, I had a 3rd degree tear with my DD (shes 3.5 now) My midwife & physio at the time, said that my stiches were the best they'd seen and I thought everything was fine.No pain/ no problems with sex etc... HOWEVER, around 1 time out of 10, when I pass wind, it slips out the wrong enterance. I didn't think much of it, as it happens so infrequently. That is until last night when I posted on a thread about farting and discovered its not normal!

I've been reading about fistulas today and feel quite faint. I really don't want to go to my doctors or to be interefered with in anyway! I had a awful birth, which I found really traumatic at the time. Namely, I was in shock at tearing from front to back. (None of my baby mags warned me about that!) This has just bought it all back to me and I feel really down about it. I'm not sure I could bare an surgery or any of the intrusive things they have to do to test. I would be prepared to live with it, since it must only be small, since I havent had any other problems. But I do want more children... So I guess I will have to face up to it sooner or later... Can anyone help or offer any advice?

Hi Minorbird,

Sounds like a fistula, or maybe its just air entering and then exiting - you never know. The best thing about my surgery (ie the one i had 4 weeks ago) was that i was knocked out. No real trauma, most of the investigative stuff happened when i was under general anesthetic. After my son's birth, i can absolutley say it was the WORST day of my life, i wouldnt put a non- living thing through what i went through during the birth, and I have been slightly mental about anyone going near me since...

I'm not mental by the way (at least not most of the time).

But my surgery and recovery has been much easier than first time round. In saying that it wasn't easy i had some seriously scary moments, but NOT as bad as the horror of the birth.

Anyway i've had a few glasses of wine so Im rambling...

Cyee still feeling a bit zonked - but the wine is helping . Hope all is well with you. Hope this repair is working - not 100% sure to tell you the truth, but i am hoping it is just the sphincter trying to get use to working again?!?!?

Thank you DMCT, I think I too would have to have general anetetic if I had to have anything done. I'm just apprehensive because I don't want to mess around down there or make anything worse. Cos everythings fine except for the odd wind thing. Its def coming from the rear though, cos I can hold the front and it redirects itself. God it's horrible isn't it? I darent even tell DH that I've discovered I don't think I'm completely fixed now. Don't know quite what to do! Will hang fire and read some more of this thread!

Sorry to hear this minorbird. Don't be embarrassed at going to the GP. They've seen it all before.

Hi all,

Hello and welcome Minorbird. I definitely agree you should get 'seen to'. I won't pretend it's not embarassing... because it is! However on the positive side, I'm not sure it is going to be a fistula. Brace yourself for uber embarassing question: since you noticed this, have you have diahorrea (sp!) and if so have you ever noticed any staining from your vagina? Even without the runs have you noticed any staining? With me I had a tiny fistula, but depending on the softness of my stools I had some staining that was so slight I thought it was brownish discharge for a while (ie it wasn't a big lump of poo - sorry TMI!). I also occasionally have what you experience in terms of wind, and when it happened after my repair op I was nearly in tears because I thought the op had failed. However it still happens very occasionally, but is definitely not a fistula. I think it depends on the way I'm sitting, the surface I'm sitting on and maybe is more common with us ladies because of the state our bits are in? So maybe if air leaks out it's easier for it to become trapped in our lady bits??

Anyway - worth chatting to your doc about, but sounds like you could be ok. In terms of future babies etc, that would all be fine regardless of whether it is a fistula and if so whether you get it seen to. I was given a choice between having the repair done now or after I'd completed my family, so I don't think they're overly worried about compound damage from further pregnancies.

Do come back on and let us know how you go - but don't panic. No point freaking yourself out about fistulas in case it's just your loose bedroom bits Keep doing your pelvic floor exercises too - they should help!

DMCT, after reading your post I had to pour myself a red wine... talk about being an advertisers dream! I am so suggestible (and I know that sounds ruder than I mean!). Glad you are feeling a bit better. You're absolutely right about the sphincter getting back to 'normal'. It's now about 4 months since my op and I still think it's not 100%. My physio told me that it takes a long long time for the bowel etc to recover from the op. So told me to expect a fairly long slog and not to worry if things took a long time to settle. I now realise that curries have become a bit of a no no (only allowed at weekends and not on 'school' nights!). I've also had one or 2 near misses where my body has decided that once it needs to go, it goes... but they have been very rare events. I think fizzy drinks set me off now as well. I won't have any of those at work either! When it happens I find it all really disheartening because even though I had the fistula and related problems, I didn't have these near miss events. Though as I say there have been less than 5 in the past four months I reckon.

Lord I sound like a right grumpy old bird! I better go and tuck into my wine... so much for this being an alcohol free day. My spirit is so weak!

Take care all!

Hey Thingone,

SO glad you're feeling brighter about things. How are the nannies working out?

I know what you mean about the very thought of it freaking you out - and it's not nice to be able to put your finger through it! Surgery-wise, will yours happen in 2 stages? I think you said you had a colostomy at the moment - so will they reverse that at or after the reconstruction? If you're the kind of person that likes detail, they can tell you exactly what they're doing. I like to know exactly (for the purposes of passing myself off as a colorectal specialist on MN ). With me, they cut out the fistula tissue and then used an overlapping technique to mend it.

I know what you mean about expectations re: recovery. I must have picked up the wrong end of the stick from my consultant because I thought 2 weeks was likely. As if! Which just made me worse because even though I knew I was recovering well, I felt that everything was taking too long. All I would say is do not scrimp on the lactulose, fibre rich foods and water (if they reverse the colostomy obviously). I was slack and boy I paid the price. The other thing to bear in mind is the bruising. I actually think this cause me more pain/problem than the op. I only really thought about how rough they'd have to be afterwards when the nurse pulled (what felt like) 60 feet of surgical ribbon/gauze out of me! I guess they really have to yank you about to do their work and this is what really left its mark on me. I had severe bruising in my crotch/buttocks. It confused the heck out of me because I didn't know why the hell I was experiencing such pain far away from the operation site. Anyway, I'm rambling.

Did you get your infection sorted out? When does your chemo start?

Keep us posted on how you are getting on!

Wooohooo - 200 posts - check us out!