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))

Thanks Thingone and Cyee! I feel so much reasssured after reading these messages! No worries about the embarrassing questions - its an embarrassing topic all round isnt it! Getting quite used to it! No, I don't have any staining when I've got diarreah (sp) and I've just had really bad week long bug too, so I can be certain of it. That said, I did have the staining you mention for a few days after I had just given birth and I was really worried but that stopped quite soon afterwards. I also used to get the front bottom wind we're talking about quite bad, where it vibrated the whole fanjo! but this was just for a few weeks after the birth. Now its very rare I get the little leak of wind into the front bit. And from reading your post Cyee - that even after repair you still get it occassionally, I am even more inclined to leave it until I decide to have more DC and then the damage can be assessed after the next birth as to what I would need done next. (If anything! eeek!) Will stick with this thread though! It's been great so far. Thank you.

Hello Minorbird!

Staining after the birth could well be the end of your normal post-birth bleeding... they call it "loss" don't they? So dramatic!

My money would be on it not being a fistula because the stress of the runs/tummy bug etc would surely open up any fistula and you'd have noticed staining every time you went to the loo or soon after. That said, it may be worth mentioning to your GP on your next visit. That way they can put your mind at rest or advise you on whether you should get it seen to before next pregnancy. Not everyone is the same and I wouldn't want you to ignore your symptoms and then have the situation cause you pain/discomfort in the future.

Make sure you do your pelvic floors VERY regularly. Whether it's a fistula or not, the health of your pelvic floor will be closely linked to the severity of the symptoms you experience.

Glad you've found the thread useful. I know I have! Keep in touch!

Bump - Hi there everyone. How are you all doing? Are any of you early posters out there? How are you feeling? How have the various appointments/treatments gone?

I keep having to resched. my consultant check up because of work, but hope to have it in a few weeks. Does anyone know what these check ups usually involve? This will be the first time I've seen him since my op (which was in May). Any input much appreciated so I can psych myself up!

Hello All

Just had a quick read through some of the posts.

DMCT, I am shocked to hear that they allowed you to get so constipated following a sphincter repair. It is well known that certain painkillers have that effect and you should have been more carefully monitored.

Cyee, If your follow up appointment is anything like mine, then they usually do the ultrasound again and a bit of physiology before you see the consultant who just tells you how improved things are. I would have to say it took a year for me to feel fully confident, it certainly isnt an immediate fix.

ThingOne, You might be interested in another forum called Ostomyland. I still go on there and it isn't all doom and gloom like some sites.

Hi Guys,

Cyee, bet you are looking forward to your consultation?!?!?!?

Mine involved, fingers, squeezing, looking and talking. No shame left. But it's not as bad as the first /second time you were there, i think you get a bit desensitized. My colonrectal guy still says 'no flinching' - God it's really hilarious.

Have my 3rd gynae consultation next week and I'm not looking forward to that - she said i have to RELAX..easier said than done.

Anyway Good Luck with yours I'm sure it wont be all that bad.
Oh yea put the house up for sale!! SCARY! Im not 100% sure I'll settle back into life at home, Ive been away for so long (not just here in England). ESp with the job situ etc, I suppose the guinness will be better than here in Yorkshire!?!?

Hi 4Jen, yea consitpation is now my worst nightmare, I dont think ill ever take painkillers again.

HAve a good weekend everyone

Lordy I could defo do without another... ah.. intimate exam! I was hoping he'd just ask me how I was doing!

What's your gynae consult for, DMCT? How exciting about the house. Wow - must be starting to feel real now. Peeing myself at 'no flinching'!!! You're right though.. no shame. At least I'm not going to have to worry about passing bum issues to my daughter - she'll be letting it all hang out!

Hi 4Jen - good to see you.

Hope everyone is well..... I need to go and do my expenses now...... ahhhhhh.......

Hello everyone, havent posted since this thread started but have been following it. Pleased to hear about all the successful operations and treatments some of us on this thread have had. Long may it continue!

I am still suffering It seems never ending. Have another appointment tomorrow which i am of course absolutely dreading. This time to see a dermatologist to see if theres anything that can be done with the sore skin around my bum. Have been told I could have scar tissue or it could be a rash which needs strong steroid treatment to clear up. I no longer know what to think. Initially was told the pain could be due to stitches which hadnt been dissolved but after having a camera stuck up my bum was tole by consultant there was no way this could be the case. It seems I am an enigma, sigh. Three years on and counting still in pain. Bloody horrific.

Will provide update tomorrow, really hope appointment will help me on the way to recovery, though to be honest am losing hope. Theres a thread in childbirth about women suffering years and years on due to tearing, episiotomies etc. Seems there are so many of us out there whos bodies have been damaged by giving birth. Why does no-one mention this in antenatal classes..

Sorry for the depressing post, feel really down about things.

Hey Janey - so sorry to hear how you're feeling. Sounds terrible.

I was actually thinking of you over the summer. My DH's cousin is suffering from something I think sounds like what you described... though maybe I have it all wrong. She basically finds it horrifically painful to touch the skin around her vagina and surrounding areas. She literally can barely deal with having clothes touch that area. This is a reasonably recent thing, ie she had a baby about 6 years ago and this has started recently. They seem to think it's a nerve complaint. Is this what it's like for you, but around your bum? She's actually pregnant now and absolutely panicking about the birth. She has struggled with her relationship with the father because of this - sounds absolutely terrible.

My thoughts are with you and I hope you stop being an enigma soon. Sounds romantic but I'd imagine you'd just rather be bloody sorted out!

Please keep posting

Hi Cyee, how are you feeling?

some of the symptons your DH's cousins experiencing strike a chord. Wearing knickers triggers the problem- they rub against the area, and although I can get away with going knickerless at home, cant really get away with it at work! Any form of movement, like walking makes the problem worse, due to the skin rubbing against itself. Wiping myself after going to the loo can mean pain all day long. I've tried using wetwipes which makes it worse, tried cotton wool and water, doesnt seem to help and tried various cooling creams like aloe vera. After the camera up the arse appointment saw a general surgeon who patronisingly suggested I take a week off work to "really crack this problem" I'm sure he was trying to be helpful but everything he suggested ie not using bath foam, using dermatologically approved washing powder I've already tried.

Interested to know what your DH's cousin has been advised to do? Has she been offered any treatments?

Thanks for thinking of me, its very difficult for me to talk about this in real life, infact most of my friends and family dont even know I'm living with this, though they probably wonder why I've been so bloody miserable over the last few years!

That sounds really hard, Janey. My skin isn't as bad as yours by the sound of things. When my skin is sore I wash with water on a soft cloth and then pat dry with another one. I bought them as cloth wipes for my little ones when they were in nappies but they have been very useful for me over the past year.

Can you get seamless knickers? Or make some? I have gone knickerless when my skin is sore if I don't have too much disharge but I'm not at work. It's so annoying when the surgeons don't appear to understand the practicalities of dealing with things, isn't it? I don't think they understand how sapping persistent soreness is.

I had a little fix done on my problem last week to try and stop it getting infected. There were two ladies in the next two cubicles having a new plug inserted in their fistulae. One had had problems for 19 years. The other for three or six. It put me in my place a but, especially as I don't have to deal with the poo side of things.

4jen - I used ostomyland a lot to start with and then forgot about it when I changed computers. Thanks for the reminder.

Thanks Thingone, will try using a soft cloth, willing to give anything a go! Might just have to go commando for while, and risk it... Had another appointment today and have been prescribed no less than three creams to use. I really hope it works, this condition is wearing me down. How are you? Hope you are recovering well with no infections and are on the road to recovery.

There is a barrier cream made by a company called Coloplast. I was given a sample of it when I had a colostomy, to stop skin getting irritated. I never needed it and gave it to my friend for her LO who had very sore skin on her backside and it was the only thing that cured it. Might be worth a try.

Hi all,

Janey, I'll find out more about DH's cousin. Another rellie told me the story, but I'm sure she'd happily share the info, especially if there's anything she can learn from your experience and vice versa.

Thanks for asking about me. I'm good thanks - I haven't had a 'near miss' in a while now. And really seem to be managing my public windiness (!) by avoiding fizzy drinks and curry of all things. I'm seeing my consultant next week, so will be good to hear what he thinks.

Hello ThingOne - glad they've done something to deal with the infection. Have you had any dates for your chemo? Hope you're feeling ok.

I completely agree that it is unbelievably frustrating when people (especially doctors) don't get the issue. And persistent pain is one of the most debilitating conditions. It really wears you down. I think some people still have the 'just get on with it' attitude... as if we wouldn't all love to be able to do just that!

Take care all

Can you get a barrier cream in the UK called Acid Mantle? Has worked wonders for some, err, delicate problems dh had in the past.

The barrier creams for ostomies are different and far more limited as you need to be able to stick a pouch on. They may work though.

Heading off for my consultant appointment. Argh! Will update later

Cyee Hope it went well! And wasn't too uncomfortable!!
I was at a physio today, doc has referred me to muscoloskeletal unit for my back, but thought i'd go to a post natal physio & pilates instructor to see if she could start to get me back into action.

She examined my pelvis which straight away she could see it was twisted out of alignment. Ie one hip bone was protruding forward - wierd. She tried to work it back into place, to some success, and pain (actully it didnt feel that painful at the time). But pretty sore now. She said it can happen with a violent birth where they have to pull the baby out. Have exercises to do and go back again in a couple of weeks.

I feel like a hypochondriac. But still feel a bit better.

Oh yea and i think you asked why i see a gynae consultant, she did the op with the colorectal surgeon, combined op, perenium and vagina (internal & external) reconstruction.
BUT APPARENTLY IT ALL LOOKS GOOD NOW [GRIN]

LIFE IS LIKE A BOX OF CHOCOLATES - I THINK I GOT ALL THE STRAWBERRY ONES - YUCK.

Better go, as you can see I am rambling....

[GRIN]

How did it go Cyee?

Hello everyone,

Well... I survived it! And I didn't even have to have an exam!

I was more than a bit irritated after the appointment though, because I saw the reg (who actually started my op) and not the consultant. I kind of expected this once I saw she was there because my appt was a follow-up. Anyway, she just had a really unfortunate manner and had no listening skills. For example, I started a sentence "I have worked out a couple of things that set me off (eg lemonade) do you know...." at which point I was interrupted with "the last woman asked me the same thing and everyone is different and you will just have your own list". I am grown up enough to see what she was saying, but by letting me finish and then replying "In my experience everyone is different and what may affect you may not affect others.." etc etc.

She also blurted out a few things about the procedure that I probably didn't need to know, like that she started the op and the consultant had to take over because she couldn't find any/enough muscle to do the overlap (so in my mind I was imagining a blood curdling scene from ER or something).

Her manner was just very blurty (word?!) and not particularly well thought out. Whereas my consultant is just the calmest, nicest, best-bedside-manner ever type of person.

Anyway, on the (very) upside, I have been discharged, but can go back to them anytime. I do feel great and know I just need to keep doing my pelvic floors. Hurray!!!!

Great news about your care DMCT, sounds like you have a fleet of people looking after you which is great! Loving your ramble except now I want chocolate. Thanks for that!

Have a good day everyone.

C

Bump- hello all - hope you're all well.

Hi Cyee. Is it tempting fate to say I haven't dribbled green puss for a week? Chemo has started .

Hi Cyee pleased to hear everything went well, great news! Does this mean no more ops or procedures? Bet you're glad its all over.

ThingOne- hope you are well and the chemo is going OK. How long do you have to have chemo for if you dont mind me asking?

I have been prescribed various lotions and potions for my bum problem and have been using them for about a month. Things have improved and at least the itching is slightly more under control.

Hello all,

ThingOne - how is the chemo going? Thinking of you and great to her about the pusslessness . Take care.

Hey Janey73 - nice to see you. Good to hear the lotions and potions are doing the trick - you must be feeling in the H'een spirit being able to write that! I haven't found out more about my DH's cousin. Will let you know as soon as I do.

It does indeed mean that there are no ops or procedures. Based on some comments on this thread I pushed a bit on the topic of 'how long with this procedure last for?' She said it was different for everyone and there was no reason why it couldn't last forever assuming I don't do anything to compromise it (another vb for example). Apparently they haven't been doing the procedure for long enough to give a definitive view and I guess we're all different, different shapes, sizes, states of health, pelvic floor strength etc. I certainly feel 'nornal' again thank goodness... well apart from the windy/urgey stuff. Thanks for asking!

Hope you're all doing well

clearly not so 'nornal'! Mean normal of course