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Continued support for SPHINCTER INJURIES, FISTULAE and other CHILDBIRTH INJURIES - the Ragged Bits Thread

952 replies

Jacksmama · 22/06/2009 20:12

Hi all,
old thread here.

Cyee started this thread in May 2008 after her op, and it's been a haven of support for so many of us who have injuries to our bits from childbirth. Especially with respect to sphincter injuries, fistulae and incontinence after childbirth, there seems to be such a lack of support for women, and the entire subject seems to be taboo. It's as if most MD's think that "a certain amount of damage is to be expected after birth and you just have to live with it". Well, that is simply not the case - and this attitude is unacceptable.

There are all kinds of Ragged Bits stories on this thread. Be aware that THERE IS NO "TMI" HERE - this is the one place where you can spill it all. If you read through the old thread, which is nearly full, you'll see that someone, somewhere, has probably experienced it - whatever it is! So don't be embarrassed or ashamed... we'll tell our poo stories if you'll tell yours.

And also - there are success stories here. Several of us who have been through the medical mill have been successfully "repaired" and are "fully functional", so to speak or even expecting again. In those cases, please join us for Pervwatch - the "after action" report for anyone who is once again venturing into marital relations!

Welcome everyone. We're sorry you had to find us, but we're glad you're here.

OP posts:
soapy4 · 14/11/2011 13:17

jeec Thanks for that sounds like your having a rough time also cannot help you one that one as I have not much knowledge about a fistula but they seem nasty things.

Nannasylv · 16/11/2011 15:23

Hi, I recently joined MN, after finding a related subject. I have recently been diagnosed with a rectocele, but (at the time of the consultation, with a colorectal surgeon) he just ended with "use a glycerine suppository every day, and digital/manual evacuation". I didn't know, until researching, that it can be repaired. I have since seen my GP, who is trying to get it sorted, but keeps coming up against surgeons who are basically just saying, carry on as you are! Now I know what it is (after multiple appointments since 1996!), I don't know how to get the repair done. I have pain across both buttocks, into upper thighs, and various issues with intermittent incontinence (which I am trying to keep to a minimum). Can you take any route to insist on a repair?

JECC · 17/11/2011 14:56

Hi everyone, Update...
Went to get the stitches removed today from where they reshaped my vaginal opening. Hurt a bit but now it is more comfortable to sit etc without them. Doc says it looks ok and will continue to improve in appearance. Hooray!
Saw the surgeon about the fistula and he has cleared up a few things I was concerned about.
Seems I had misunderstood what he had actually done down there. I was under the impression that I still had a separate fistula and that he had just taken out the healed tissue to let it re heal and hopefully close. What he actually did was pass a cutting thread through the fistula and out of the anus, tie the two ends and pull tight enough for it to cut through the tissue inside the loop. Because the fistula was fairly low he could do this. That basically means there is no fistula anymore, just an anus with a kind of v shaped extension to one side that will heal gradually. I am so relieved that the stool I have sometimes been seeing was not in fact coming down a separate tunnel but is in fact a normal occurrence, given the shape of whats there. I am so happy and relieved and am just praying there will be no infection, nothing to make the slow healing progress go off track again, after 9 months of problems I am tentatively hoping this is the beginning of the end.
So there's a hopeful success story for you all to cling on to! I will have a check up in December so will pop back to update then. Good luck and hope to you all xxx

Jacksmania · 17/11/2011 21:10

14k - thinking of you. I bet you're scared as anything - the pituitary condition just complicates things, doesn't it. :( I have nothing useful to say except I know how you feel (minus the pit. thing) and I'll be virtually holding your hand on the 21st. Much love to you - the anticipation is the worst, I hope you're hanging in there.

JECC, I'm so happy for you! Crossing all my fingers for you that everything heals beautifully.

Nansylv, I'm glad you found this thread. Unfortunately I really don't know what to say to you - I am beyond shocked that any surgeon would think it's ok to just leave a woman having to manual clear her bowels every day and that incontinence is something you just have to put up with.
If it were me, and if I had a GP who was willing to go to bat for me, I'd just keep repeating: I am not prepared to live like this. I have pain, which is getting worse, but the emotional struggle of living like this is wearing me down. Rectoceles can be fixed. Do your job and bloody fix me!

I don't know what else to tell you. Welcome to the thread, please keep posting.

How are you all?

soapy4 · 18/11/2011 18:31

Hi all has any one had steriod injections for the pain??? I have a 4th degree tear which went unnoticed !!!!! how is everyone?

l4k · 19/11/2011 12:58

thanks for the thoughts,Jacksmania.

At this stage I'll feel lucky to simply survive.
I've got a problem,I have an infection in my finger. the GP has put me on strong antibiotics (flucloxacillin 500mg) 4 x a day but its a weeks course and I'll only have had 5 days by the operation.Really don't want it to be cancelled so think I'll have to tell the hospital I've finished the course.
My finger looks much better already.
I might do another a new thread to get more opinions on this.
really very concerned,I don't want to put myself in danger but we are all geared up for this to happen now.

Jacksmania · 19/11/2011 15:11

I really think five days is enough, plus you'll be getting intravenous antibiotics during your op (I think that's pretty standard?) so you'll be covered that way.
It's Monday isn't it? Will be thinking of you. xxx

l4k · 20/11/2011 08:23

I go in on monday,op on tuesday. (i hope)
Thanks.x

soapy4 · 22/11/2011 08:37

Good luck 14k

PrancingBuffalo · 23/11/2011 19:43

I posted here ages ago - under TheBuggerofSuburbia I think. I've just got so down with going backwards and forwards to hospital, having tests, etc, that I couldn't bring myself to keep posting.

I've had urodynamics, rectal ultrasound, manometry, and some other horrid tests, but nothing has been diagnosed. I don't feel anyone has listened (apart from the fab physio I saw months ago). I've had loads of investigations for urinary incontinence (but that's not my major problem) ending with a bit of stroppy registrar who told me there was nothing much wrong. I know there's not - well not as much in that department. I'm convinced I have a rectocele - I have all the symptoms, problems with BMs, need to support myself to empty my bowel, etc - but how the hell I am ever going to get it diagnosed? I thought the ultrasound was to diagnose, but afterwards I was told that it wouldn't show up.

It's 15 months since my first hospital referral (my records got lost at one point as well) and I'm no further forward. I had an appointment for a joint colorectal/gynae clinic next week, but it's cancelled because of the strike action. Sigh. I'm feeling really down, and that all the tests have been a waste of time. Can I ask those of you with a rectocele, how was it identified/diagnosed?

I'm sort of glad to see the thread is still going strong - I lurk a lot - but sad that we're all here anyway. Sending you all unMN hugs.

DoomBar · 23/11/2011 20:57

This reply has been deleted

Message withdrawn at poster's request.

messmessandmoremess · 24/11/2011 20:51

Seems to be a lot of us with a rectocele deemed not bad enough to treat.
If I stopped splinting it would soon look bad enough but can't quite bring myself to go that far.
Also I am apparently too young (40) and repair not likely to last.
Is this attitude a cost cutting method do you think?
I'm done having children and would dearly love to just poo!
Surely it is unreasonable to expect some one to have to manually push their poo out every time?
I'm luckier than some that perinial pressure does the job.
Fed up having to check if rectum is full especially if husband is expectantly hopeful.

PrancingBuffalo · 25/11/2011 18:55

Thanks DB - when I finally get to see the next consultant, it sounds like I'm just going to have to keep insisting that there is one there. It's the standing up that makes a difference I think. Mess - it's not fair is it? - I think I'm going to ask the consultant if they'd think it was ok for them (or their partner if it's a bloke) to have the problems we do! I'm 40 next year - so we have to get older and worse before they'll treat? That's rubbish.

PrancingBuffalo · 25/11/2011 18:59

Thanks DB - when I finally get to see the next consultant, it sounds like I'm just going to have to keep insisting that there is one there. It's the standing up that makes a difference I think. Mess - it's not fair is it? - I think I'm going to ask the consultant if they'd think it was ok for them (or their partner if it's a bloke) to have the problems we do! I'm 40 next year - so we have to get older and worse before they'll treat? That's rubbish.

PrancingBuffalo · 25/11/2011 19:00

Oops, not sure how I posted twice!

l4k · 26/11/2011 09:29

thanks soapy, I'm all done and home again.So far so good!! bit tired atm so will come back later.Already posted on down below stitch up thread,if anyones interested.
x

Jacksmania · 28/11/2011 19:00

Hey 14k - glad to see you're home! Looking forward to an update from you.

Buffalo and everyone with rectoceles and other "not believed by male gynaes" issues - I have had great luck with my own referrals, never not taken seriously, but have gone with friends who have felt unable to be assertive, and the question "if this was your wife, would you be equally as dismissive? I think not" tends to have a sharp-pulling-up effect on consultants. I find it much easier to stick up for friends than myself thanks in large part to MN and asking that question has made a difference a few times.

Cyee · 28/11/2011 21:11

Glad you're home l4k - hope you're managing to get some rest.

I feel so cross for those of you who've struggled to get a diagnosis. I had a little of that myself, no one could feel the fistula so I did think I was bonkers at the beginning, however bloody hell, you guys are having to manually poo... they have to see there has to be a reason for that. GRRRRRR emoticon. Take care of yourselves and well done for keeping going in the face of this ridiculous situation.

soapy4 · 01/12/2011 14:46

jecc
Great news

Achnaha · 01/12/2011 21:47

Hello. I've been lurking and reading these posts for a while and feel really moved by your experiences. So glad to find this after initial internet searches come back with 'only happens in underdeveloped countries' etc.
To try to be brief, I've a lovely 13 month old but experienced some trauma with a 29-hour delivery, augmentation, episiotomy and forceps, with SPD making things extra painful. Had months of referral to physio for pelvic floor double incontinence then in August had anorectal tests done which showed damage to external (phew?) sphincter muscles and an undiagnosed 3rd degree tear and a small fistula.
I've felt pretty calm about this until about two weeks ago when I discovered my GP hadn't been sent the results of my tests. So I phoned the hospital and the lovely assistants faxed things over to her. My GP then faxed the results to my gynaecologist and I have a follow-up meeting next week. Am 40 soon and would like another baby so want to know what's going on and what implications might be, particularly as I'm an oldie!
So, my question is really, what kind of things should I ask my gynaecologist next week? I'm likely to just nod and say 'yes' to whatever she says!

Nannasylv · 02/12/2011 12:42

Cyee, you said "no-one could feel the fistula", and it made you feel you were going bonkers. Snap! I am still trying to get someone to look properly, and can't believe a surgeon told me to use Glycerine suppositories, and manual evacuation daily (no need to fix the problem then!), as a solution to what he has decided is just a small rectocele. Apparently I should just be grateful he didn't find Cancer! Is there anything I should be asking, when I get my next appointment (with a Gynae surgeon this time)? Can they know if a fistula is present, without doing a virtual colonoscopy (or something comparable)? I'm having a bad few weeks here, and am so desperate! It's currently affecting my Sciatic nerve, and a degree of incontinence also, so no decent quality of life at present.

Nannasylv · 02/12/2011 14:14

I just found this in another talk thread, and I needed a good laugh. I hope it cheers someone else up!

ABOUT THE WRITER

Dave Barry is a Pulitzer Prize-winning humor columnist for the Miami Herald.

Colonoscopy Journal:

I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy.

A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis.

Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner.

I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, 'HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!'

I left Andy's office with some written instructions, and a prescription for a product called 'MoviPrep,' which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America's enemies.

I spent the next several days productively sitting around being nervous..

Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor.

Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons). Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes - and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, 'a loose, watery bowel movement may result.'

This is kind of like saying that after you jump off your roof, you may experience contact with the ground.

MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but, have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

After an action-packed evening, I finally got to sleep.

The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, 'What if I spurt on Andy?' How do you apologize to a friend for something like that? Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked..

Then a nurse named Eddie put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep.

At first I was ticked off that I hadn't thought of this, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house.

When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point.

Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand.

There was music playing in the room, and I realized that the song was 'Dancing Queen' by ABBA. I remarked to Andy that, of all the songs that could be playing during this particular procedure, 'Dancing Queen' had to be the least appropriate.

'You want me to turn it up?' said Andy, from somewhere behind me.

'Ha ha,' I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.

I have no idea. Really. I slept through it. One moment, ABBA was yelling 'Dancing Queen, feel the beat of the tambourine,' and the next moment, I was back in the other room, waking up in a very mellow mood.

Andy was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.

On the subject of Colonoscopies...

Colonoscopies are no joke, but these comments during the exam were quite humorous..... A physician claimed that the following are actual comments made by his patients (predominately male) while he was performing their colonoscopies:

  1. 'Take it easy, Doc. You're boldly going where no man has gone before!'
  1. 'Find Amelia Earhart yet?'
  1. 'Can you hear me NOW?'
  1. 'Are we there yet? Are we there yet? Are we there yet?'
  1. 'You know, in Arkansas , we're now legally married.'
  1. 'Any sign of the trapped miners, Chief?'
  1. 'You put your left hand in, you take your left hand out...'
  1. 'Hey! Now I know how a Muppet feels!'
  1. 'If your hand doesn't fit, you must quit!'
  1. 'Hey Doc, let me know if you find my dignity.'

  2. 'You used to be an executive at Enron, didn't you?'

  3. Hello yourself!

And the best one of all:

  1. 'Could you write a note for my wife saying that my head is not up there?'

I hope that made you laugh out loud (I certainly have simply cutting/pasting it for you).

Good luck. It will be fine.

Cyee · 05/12/2011 22:47

Nannysylv - hilarious!!! (the article, not your situation :))

On the more serious note of your question, mine was only unequivocally identified when they did the scan, an ano??? cannot remember. It was like a thin vibrator/wand thing. That showed it up like an xray. Worth reminding your docs that you've been on this site and know that fistulas are unusual but not unknown in the developed world. My physio was the only person who was engaged enough to try to feel it and she said she could. When they're small I think they are very difficult to feel. In my case there was some staining that indicated there was some kind of 'communication' between back and front passages, so from there they kind of had to assume there was a fistula.... that said the staining was so slight they still made me feel a little bonkers. I hope this helps.

Hello to everyone else, and sorry for the brief visit...

Jacksmania · 06/12/2011 04:25

Achnaha, just briefly, will pop in again tomorrow - I'd be asking the surgeon several things:

  • can the tear and fistula be fixed
  • if yes, how long after will you need help looking after your toddler
  • if you have the repair, what effect will a subsequent pregnancy have on the repair
  • how long after the repair do you need to wait to allow the repair to mature before it's ok to get pregnant again
  • when you get pg again, will having the repair mean that you'll be needing a section or risk undoing the repair
  • is it better to have a second baby and then have the repair?

That's all I can come up with right now, I hope it helps. When is your appointment? Good luck!

l4k · 06/12/2011 19:27

Hi all. Really not up to reading all posts,sorry.
I was doing so well following my surgery (vaginal hysterectomy,perineum repair,anterior and posterior repair) but everything changed last weds (8days post op)

Long story short, ended up back in local hospital on thursday with pelvic infection . After scans and ct on Friday they discovered a hematoma which they couldn't drain because I was too ill to go to theatre and had an adrenal crisis (I'm steroid dependant )

They are hoping it will be reabsorbed within six weeks
I came home yesterday when my temp was finally normal. This has been so scary and I feel so much worse than I did when Id just had the op. I so worn out. Poor husband has almost gone grey!!!