Double incontinence

[StillSuffering]

Hi, I've posted on here in the past but have changed name.

I just want somebody to talk to really. I'm struggling with this so called life that I'm living.

I had my 2nd baby 5 years ago now. 'normal' vaginal birth. Left with anal & urine incontinence.

I've been through physio & have just been signed off as there's nothing they can do. I had an op with the colorectal team which stopped a lot of the pain, & reduced my skin tag so I'm incredibly greatfull for that. But I still poo myself. When I questioned this I got told that it was never supposed to stop the pooing myself. (I thought it was)

I was discharged from colorectal as 'Its just what happens after birth'.

I've just been re-refered to them.

I saw urology for about 5 seconds where the consultant sat down, drew a woman & explained that I could have the tape to stop the urine leakage but they aren't available right now & anyway I have to sort my weight out as I'm getting fat. He yawned the entire way through.
When I told physio that he didn't examine me they paused then said... 'He would of examined you' !?

I've just been re-refered to him again & seeing his name fills me with dead.
I'm not seeing him again. I refuse.

I did the urodynamics test which by some miracle I didn't wee myself. So that was useful.

I wee myself constantly. I can't wear pads all the time as they rub & make me sore. So I'm often just 'wet' down there. I often go to the toilet for a wee, wipe & there's all poo there. I sometimes have diarrea where it suddenly comes out & goes all over myself, in my vagina & everywhere so I have to clean all that.

I've lived like this for 5 years & it's fine, it's just my life. I will never meet anybody, for obvious reasons. It's just me. I'm so lonely.

I was reading another thread about a man who now dribbles urine & 'Stinks of piss' & he has so much sympathy. I got my baby so I get no sympathy.

I'm on another forum & people say that if you don't want sex in a relationship then all you can hope for for the rest of your life is friendship.

I don't even have any friends.

I hate my life & I spend a good portion of every day wishing that I weren't alive anymore.

My kids would have a happier time if our days weren't restricted to where has a toilet, panic If a toilet is shut, having to wait in the toilet while I try & dry myself, having to rush to the toilet when I need to go, & me hobbling around at home covered in sudocrem as I'm so raw down there from the pads.

They would have a happier life with somebody else.

i don't suppose there's anything that anybody can say, this is just a pity party really.

Is it possible to be put to sleep for a colonoscopy does anybody know?

Have a read about Beneden health. It's about £12 a month and after 6 months you are covered for lots of things, even pre-existing conditions.

Yes you can definitely be sedated for a colonoscopy (and you’ll probably fall asleep bit even if you don’t, you won’t care what’s going on).

Benenden is excellent - it’s only for diagnostics tests though, not treatment I think.

OP I’m so sorry you’re going through this. What medication are you taking currently?

Thank you Lipolass. He prescribed me some cream to take for 6 weeks before the colonoscopy but I don't see how that's going to help if it's just too tight.

I'm supposed to be taking AD's but I havn't done for a while, & I'm on 20mls Oxybutinin to help with the urine incontinence but it makes no difference. & 2 movicol sachets daily.

@StillSuffering I've been wondering about you.

A colorectal surgeon should absolutely know better, sounds like he knew he was too rough. You are absolutely entitled to refuse further digital examination without sedation.

As pp said, you can absolutely have sedation for the colonoscopy - don't be afraid to ask for lots and (just in case) don't feel pressured to go without. It's no problem for them at all.

Did you just stop taking ADs? From experience, if so that won't help. Would you consider speaking to your gp about starting again? If they weren't doing anything for you you can try something else. True, they don't solve the issues but they might help you cope.

There are extra strong deodorants you might be able to use on your upper legs, I think they're applied once every few days, but your skin will need to be completely dry during application to prevent stinging and not broken or irritated.

Have you spoken to colorectal nurses about a barrier cream or spray? It will protect your skin from the wet. Nurses really are a great port of call to help with the skin issues you have there. If you have any sores, a wound specialist nurse can work miracles.
💐

Hi 007DoubleOSeven I imagine there's a strong fear reaction there now because of how awful the last exam was, but that fear isn't going to go away when they continue to hurt. He said 'I won't go any further' & I thought he meant he was going to stop but then he carried on for which felt like absolutely ages

I havn't spoken to anybody about a barrier cream, I've been busy working out what was going on there tbh, it took a while for it all to click into place, (That the itching on the edges is due to dry skin & the pads aren't sticking not because I've wee'd so much but because of sweat) I'm going to try & get an appointment with the nurse at GP & talk all this through.

Surgeon today asked if I'd consent to a colonoscopy & I said 'Only if it won't hurt like that' & he said try this cream for a few weeks before the appointment & then it shouldn't hurt, but 'Shouldn't' hurt isn't good enough for me now. I have to come home & be mum to my kids & it's obviously harder when I can't sit down properly due to being sore.

I did stop the ADs just like that but it was a while ago. I might speak to them about some more, I'm not sure.

Thank you for your support, as always!

Surgeons aren't always the most compassionate unfortunately :( nurses can be much better as they witness patients suffering more.

Stopping anti depressants suddenly can lead to rebound symptoms so if you've been feeling mentally worse lately, that might be why. Since I've learned to become consistent with mine, not only has the consistency allowed them to work properly but I also notice symptoms flaring up if I miss a few doses, which is why doctors keep banging on about weaning off them 😄

With the colonscopy: sedation should mean you're unaware of pain while it's being done, with any luck you'll fall asleep for the duration. Given what you've described, it might be best to prepare for discomfort in that area afterwards..HOWEVER - colorectal nurses are still (I think) best placed to advise you on this and hopefully provide reassurance/ give you further tips for reducing discomfort.

For example, if you think sitting is likely to be a problem you could get a ring/doughnut cushion which would hopefully mean you can sit without putting pressure on the area.

If you're still liaising with your surgeon, ask him to refer you to the colorectal nurses to set up an appointment with them, which would save you the hassle of doing so yourself.

Nb - with sedation, you'll need someone to drive you home and be with you for a few hours after the procedure as the hospital won't discharge you unless they know you'll be accompanied until sedative effects have worn off. I've had sedation for gastric procedures before and usually am fine by the time home but once I stayed pretty sleepy until the next day so having someone to lend a hand if you just in case is helpful.

I'm so sorry to read your post. I have urine issues after giving birth but can't imagine both
No advice really, other than to not give up finding the right help.
I came across a podcast called at your cervix which talks about a lot of this stuff. They may be worth contacting for some specialist advice?
Xxx

I have no advice, unfortunately, but I'm so sorry this is happening to you.

No advice other than to say have you considered period pants? I get real bad irritation from incontinence pads but period pants are great. You can get them from £7 on cheeky wipes.

Also yes you will definitely get sedation for a colonoscopy. Doctors will never give me sedation (I needed a spinal for a gynae procedure as they wouldn’t sedate me and wouldn’t let me have one for my endoscopy) but even then I was given one for my colonoscopy.

Thank you all for the kind words.

I wonder why he didn't suggest sedation & just told me it should be ok after using the cream.

Would it be the same consultant who does the colonoscopy or would it be done by somebody else? (Generally)

He seemed nice before we got to the exam part & then he just seemed in a rush to get it done. He was feeling my tummy & muttered something about surgery so i said I'd had surgery for an ectopic & he kind of snapped 'I was looking for your C-Section scar but it's not easy to find'. (I was just trying to help)

Also, during the exam, whilst I was crying, he said 'Is it painful?' I thought that was obvious.

Anyway, it's feeling better today.

peanutbuttertoasty Thank you. I hope you are able to recover from yours.

007Double0Seven I know what you mean about the ADs but I honestly feel ok, no different to when I was taking them. Thank you though. I hadn't thought about the being driven home etc, I probably won't be able to get it done then

Browsing2023 I think I'd have to go for incontinence pants, I've just been looking but they are very pricey for me, also, I just recently bought myself some new knickers to try & cheer myself up a bit. They are lovely & comfortable compared to my old ones that I'd had since being pregnant & were all stretched/full of holes

OP I haven't read the full thread but firstly, , and secondly, ask to see another doctor. My mum did this with a medical issue after a dr was similarly dismissive of her & it improved the situation

Push. You deserve better.

Thank you mumyes I'm glad your mum get things sorted.
Unfortunately I've seen several different consultants/physio etc over the years (this has been going on 6 years) & they never really come up with any solutions.

This one yesterday did have some kind of a plan instead of just saying 'Its caused by childbirth' (& even though he was rough as hell)

Hi OP,

This whole thing sounds like a total nightmare. I think I would start by asking formally if it's possible to have the colonoscopy under sedation. It sounds like it was all very painful but I think it sounds like they think it would be a useful diagnostic tool.

Secondly, and this is a practical question - do you have a radar key? It won't fix any/many of the issues but it might make them easier to manage in public?

Thirdly, I wonder whether it's worth asking about someone to help you advocate for yourself? I don't know if it's possible, but the healthcare system is so difficult to navigate. They definitely exist for some people but not everyone so I don't know if you're eligible but might be worth asking.
https://www.pohwer.net/suffolk-advocacy-service

I wouldn't write off explaining your situation even if you don't technically fit one of the categories as I think the totality of it is such that they might well make an exception for you.

Finally, and this might or might not be one to execute now. If this gets stuck again, try complaining to PALS - I'm pretty sure both West Suffolk and ESNEFT (Ipswich and Colchester hospitals) have PALS teams. If they aren't helpful, once you have tried PALS etc to resolve, try (if you can bear it) emailing your local MP to ask for their support. They have a team of case workers who can send things through directly to the local commissioning organisation and then try and get support that way. It's usually quite effective.

The other people, who I'm not sure if they could help, but they care very much about all the ladies they deal with so might be worth asking if they have any ideas, is Suffolk Babies. It's not properly their area I don't think but they might have some contacts in the right places.

Sleek incontinence knickers .
they work for sweat and wee .will keep u dry and stop wee on your clothes .
in your situation I’d have a bag fitted to redirect the poo .
you need someone pushing these doctors on your behalf .
have you a relative you could confide in who could push to get things moving .

Autumnsoon Thank you but I really don't want a bag fitted &, with all the things the consultant mentioned yesterday, he didn't mention a bag.

Thank you Augend23 After reading up on it, I don't even know what I need the colonoscopy for, I mean all of this started due to childbirth so what is it going to show?

It's probably a moot point as I have nobody to pick me up, nobody to stay with me if I did have it under sedation & I'm not having it without.

The Advocacy service sounds good, I'll have a look.

You have to be your own cheerleader with the NHS and in getting anything done. If you should be on ADS then why are you not taking them? It might give you the impetus you need to tackle this ( again) going forward in a positive way.

With a colonoscopy they offer you mild sedation which means for many people that you feel nothing. This procedure might help to establish that you have an issue eg Bile Acid Malabsorption which causes diarrhoea so that is a positive thing. This can be treated.

Have they said you have a prolapse with either? A friend of mine has just had both fixed.

Re barrier creams - you don't need anything fancy. Sudocrem or similar will do.

Are you planning on having any more children because this could well be something you should make clear to them.

I feel that the father of your children needs to step up and take some time off work to allow you to go to these appointments. After saying that I have had a colonoscopy on a Saturday - many of these units work 7 days now.

You seem to have issues with any of the people you see - do you think this is just your sensitivity and not being on your ADs? As I said initially you need to push for anything in a clear and positive way. I understand you must be really down with all of this but you have to not just accept this. Sorry if this bit seems harsh on you but you do have to fight your corner.

You should allow any investigations that may help. Dr Google is not your friend. Don't close down your options.

KPops22 Well yes it is harsh & it's not needed right now. I can't even remember if I was on AD's when the previous consultant put his hand on my naked hip & said 'Its just what happens after childbirth' but if you are telling me that, if that happened whilst I was on AD's then I'd of been happy with it? Well I don't see that. AD's aren't a magic cure to make women accept pooing themselves for life without being upset.

I've seen lots of lovely, kind, compassionate people but they still haven't come up with any answers. Clearly. Otherwise I wouldn't be on here saying that I'm still incontinent would I? Because it would all be fixed. So I'm not sure the relevance of AD's there either.

I'm doing the best that I can do.

If you know a way to make dad's step up with their kids then post it as I'm sure that I & plenty of other women on this site could use it.

KPops22 I've never refused a single thing. I've tried everything they've offered.

I'm allowed to ask a question about a colonoscopy.

He actually said that he'd put me down for a shorter version or something (can't remember the words) & I said 'No, let's do the full version & do it properly'. (Even though I was crying)

So I'm allowed to ask questions on here. That doesn't mean I'm closing down my options.

Back off.

Ah well there you go then. Good luck going forward.

You need to start to advocate for yourself.

Try deodorant on your legs / groin.

I am so sorry you are going through this. firstly get some proper Canesten intimate wash it soothes and is brilliant for cleaning too I buy multi-packs off Amazon it's cheaper
secondly, Sudocrem won't stop the soreness get your doctor to prescribe Timodine cream I have splits and soreness in my vagina and it works like a miracle.
thirdly if you can take someone with you when you see the specialist if you are near me I will come they don't leave me in the waiting room and they damn well listen to me too
Pads do make you sore but do investigate other options I think I am right that you can get incontinence pants you can use without pads.
Losing weight may help but I am guessing you are not in the right place right now but do check your diet too much sugar fizzy pop etc will make your bowel over work too.
lastly I am sending you a big hug and pm me anytime if you want a friend

Just a note about barrier creams - traditional creams probably aren't going to cut it as anything more than a temporary solution given that your skin is in constant contact with irritants, which is why I'm saying speak to colorectal nurses who have a whole heap of products very specifically designed for skincare in situations like this - gentle sprays that leave a protective film etc.

The difference is important not simply to protect your skin but because creams such a sudacrem will prevent adhesive sticking and might increase sweating.

I'm not in touch with them anymore unfortunately but I had a close friend with a lot of problems in this area and they had invaluable help for skin protection.