Just cannot hold on for the toilet...what is going on?

I suffer from inflammatory bowel with my Behcets, and that normally involves incontinence in episodes of diarrhoea. However, for the past couple of months I have been totally unable to hold on to my number 2s at all. I get no warning, then a few cramps and gas and whole firm balls just pop out my other end.

This weekend just gone by I got the gas and knew I needed a toilet immediately but the cafe would not let customers use their toilet. I had to walk to some public toilets of about 5 mins walk and half way there, just knew I was not going to make it. I had to dive into a bush in a very busy public park, near a car park too, and just pull down the trousers and it all popped out....very, very humiliating. Pads are not the answer for that. Pads work if the faeces is soft or liquidy if I leak, but if whole large solid bits come out...it just squashes everywhere. I did not have a suitable pad on anyway (Tena lady mini) and so had no option but to defecate in public.

I have contacts with Crohns who have had to do the same thing and stop the car and go to the loo right by a road side. Have any of you who have bowel problems had this?

I cannot help but think that perhaps I have something anatomically abnormal that I can no longer hold on and it just comes out when ready. Have spoken to docs about my bowel incontinence for years and not got much help to be honest. Other than wearing pads, or being given laxatives so strong it makes me have the runs in order for easier maintenance of clothes with pads.

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  • Bless you hun, I do suffer with bowel problems with BD, but not on the scale that you do. I have been caught short on occasion and know how humilliating it is. Thankfully with my BD under control, my bowel is stable too.

    There must be something that can be done for you. Having to live your life not knowing when your body is going to catch you out certainally isn't something that you should have to live with in this day and age. Hugs. Clare x x

  • Hiya...sounds a bit like Faecal impaction...which once it gets moving is real hard to stop. The popping out description makes me think that. I would speak to your GP as I think you would probably be better using an enema at home or something so that you now when you go out this isnt going to happen....a little like self cathertarising...at least you can do it befre you go out so no accidents. I think a referral from the GP is needed...big hugs xx

  • I was wondering whether perhaps I had a bit of a prolapse. Normally with faecal impaction, it is very hard and constipated....this is quite normal in consistency, but it is just not waiting further up to come down. I have had problems with sphincters not working from neuropathy, and failure of parasympathetic nervous system etc...and I also have a large anal tag on the anal sphincter, which makes it a little difficult. This does not feel normal, but my GP just says well its part of my condition and I have not been examined or referred. I would not be able to use an enema at home anyway, my arms do not reach to allow me to get to that area which makes it extra difficult. The reason for the tag is that I have to use bottom wiping equipment that drags over that surface and so after 15 yrs it has done quite a bit of damage. I cannot see a way of getting an enema in. When I have had enemas before in hospital before a endoscopy, I remember that although it encouraged going it would not stop...once I had the endoscopy cancelled and went home, and I still kept having an urge for days.

  • With regards to the impaction theory I just wondered as poop can sometimes bypass the impacted part....hence the sudden appearance.

    However, I really don't think that you should accept this as being something you should have to put up with. In this day and age it just isn't acceptable and I am sure that there are things that can be done.....I think your GP would want something done if it were him/her living like this

    . It really is quite s*** service on their part I think you should insist on a referral to the relevant Specialist...(I have no idea who deals with that area) xx

  • Yes, you mean constipative overflow...I had that when I had bowel obstruction but that is entirely different from this. When I had that, faeces that was not at all ready or fully formed pushed past a blockage in my colon and came out, it had a small bowel smell to it not unlike illeostomy bags and a consistency of runny porridge. With this, it is almost as if what is in my colon is dropping down too soon then staying there, and my anal sphincter does seem a bit loose and stuff just pops out unannounced. Seems to be getting better over past few days thank goodness. Am still eating and drinking normally, so hopefully will settle. Could also be the pancreatitis playing up, if I eat any fats at all sometimes I cannot digest it and the oiliness of it could make it slippery and come out as if it was an enema...but something feels wrong down there.

  • Hi,

    It really made me want to cry when reading your question because I am the same and I really feel for you. Don't have wind problems or ever get constipated but have had to live with having the runs for the last ten years or more. Sometimes get a warning by having the most terrible pains from all around my back to the front of my stomach and know not to risk going anywhere, but sometimes there is no warning and it is literally like water and is very difficult to hold in. I get extremely distressed if this happens when I am already out somewhere. So basically I avoid having any type of social life and never go to weddings, christenings etc as I don't want to put myself in a position that is so embarressing as well as degrading. All my hospital tests are an hour and a half away so take a lot of immodium just so I can get to them. Even that doesn't always work though. I had a colonoscopy 6 years ago before they diagnosed me with Behcets and was told it was IBS. My consultant thinks now that it is part of Behcets and going over my medical records I have obviously had this illness for years. I have so many other problems due to this illness she wants to sort through the urgent ones before sending me off to yet another consultant. She thinks that it is probably inflammatory bowel disease caused by the Behcets.

    People don't realise how much of an impact this has on your life and confidence. I have had to give up work and have missed out on seeing the children play in rugby/football matches, parent evenings and the list goes on. I am very fortunate that my husband is really amazing and supportive.

    If ever you want to message me for a chat please do. Take care xx

  • My lack of bowel and bladder control, as well as pain, means I cannot attend crowded places even if there are loos. I just have to arrange other leisure things but do miss going to gigs and music festivals. What makes it doubly hard is I do not have normal length/stretch in my arms so cannot reach to wipe or use equipment properly, and that makes it difficult. When I used to get the runs, it was actually easier because the pad would absorb it....but this last Sunday was a proper pile of fully formed poop, and no pad will contain that or it squashes out the top.

  • Hello there. I'm sorry to hear about this. I've had a few episodes of bowel incontinence, 1 lone episode and a run of a few episodes together but fortunately it stopped. I don't know what can be done about it but I did want to mention that I think if you suffer from incontinence I think you can get an id card of some sort that you can show to shop keepers and the like, and they are obliged to let you use their toilet facilities, even if it is their staff toilet. I think you might be able to acquire one from your GP ... I will certainly investigate this if or, my incontinence returns.

    I hope this helps. Good luck !

  • There used to be a 'can't wait card' years ago that Crohns Society issued, but have heard since that its not available any more. I have asked shopkeepers before, and they have said no despite knowing my disability and me showing them my BD card. To be honest, sometimes there is absolutely no time to even ask or wait for a reply, and going to their toilet would literally be a clean up operation. On Sunday I managed to last just over 3 mins from start of rumblings if that.

  • I've just read the other replies and your further information. I have an anal tag and a small rectum prolapse. I had an endoscope following a prolonged episode of compactation. This was before I was diagnosed with Behcets. At a later date I had an MRI of my lower spine that showed quite a lot of damage. I did have suspected fracture some years ago and it was decided that all thesethings contributed to the constipation and incontinence. I've left it for now as I'm concentrating on other symptoms at the moment .

    I hope you can get more control over this. I definitely understand how debilitating these types of problems can be.

  • I suspect it could be sphincter problem. I had to have a sphincterotomy near my pancreatic ducts, and I also suffer really badly from stuff coming up through the stomach too. I reckon it is probably related to a lot of neuropathy I seem to be getting with Behcets. I dont like how the lack of control seems to be creeping along and things are getting slowly worse. I am due for an MRI of the spine, I don't really think I can ask my neurologist to do lower, he would probably just ask me to get another GP referral for it, he isnt that easy to relate to.

  • Hi I'm not diagnosed with Behcets as yet but thought I would tell. You that I have many problems ,one being I self catheterise ( urine )and I have a prolapsed bowel..so WAS just in the same position as you .Which is just horrible..I am un able to have it operated on for many reasons,which for some people is an option.and cures the problem.

    I go to many hospitals but I'm under Dr Emanuel at UCH Euston rd london..for that end of the body!.and after many tests I went to see a continence nurse who taught me how to use a Peristeen anal irrigation system...it is easy to get the hang of and like 'good life ' above says its stops you getting impacted and runny stuff leaky suddenly..you should not have to put up with this quality of life .. There is an answer...

    Google Peristeen anal irrigation and photo copy the info ..then show your GP or Any consultant you see ,who can write to your GP to encourage action to help you

    Best wishes ..donna

  • Anything that requires use of hands is not an option for me, I cannot reach my private parts or grip with my hands and lots of other problems. That is why its extra difficult. Even an enema is not possible for me, and I cant use tampons either. I suspect that my anal tag, which goes part way inside, is stopping that part of my sphincter closing and working properly as a circular muscle should....but I do suspect that I might be prolapsed....I am going to try and get a referral soon.

  • There's no harm in asking ! There are only 2 replies... yes or no.

  • hi. I have a heavy bowel involvement I've been on humira and that's helped a little its not helped the anal ulcers as well as they hoped. I still have to wear pads after a rather disgusting accident in the middle of M&S and me wearing light trousers at the time.. thank goodness I knew most of the staff and they were aware of my problems.

    I did go and see professor darzi at St Marys about maybe having a bag but the General feeling was any stoma would endup like all the other wounds not healing and would be worse in the long term.

    It has helped I got a RADAR key they the loos are in much better condition than normal public toilets

  • What is a RADAR key, and can you get one in the UK? Also, what pads do you wear for bowel accidents? I have large ones that are bigger than my pants, and then smaller ones for bladder....but to be honest, the larger ones are only good for when I get liquid seepage and not for the fully formed stuff....also being overweight, there is not much room between my buttocks and it seems to travel up my back! If it ever comes over the top of my waistband it will be a step too far! Have to maintain a healthy sense of humour. Could not help but go bright red when my local dog trainer told me to watch out for human poo in the bushes, I thought oh no she knows! But it was a different park where fishermen cannot be bothered to walk to public loos so they go in bushes near the lakes.

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