www.incontinentsupport.org

I am fully bedbound and live alone. I have carers coming in 4 times a day. I really need care all the time but they're just not following through with that. I can't use a toilet or commode. If I need to have a bowel movement when nobody is here I sometimes have an accident (depending on how urgent it is and how long I have to wait. It's 12 hours overnight). I have a catheter so my bladder is sorted save the odd spasm and wetting accident - so I don't usually wear more than a thin pant liner to catch dribbles from the catheter. So far I've always had enough warning to grab a large pad, get my trousers down a bit, do it in to the pad, clean up a little and move the pad out of the way. This is tiring and not very nice when I have no way of washing my hands. I also can't guarantee doing it well....but my bowel movements are so big that without moving it out of the way I would end up unable to roll over or lie on my back. I am then stuck with a poo in my room. Which is gross even before you factor in the smell sensitivity that comes with my condition.

Anyway I've had 2 accidents at different times in the last 3 days and I don't know what to do. The first time I wasn't on antibiotics, this time I am so maybe that's a factor. I suffer from constipation and have been using manual evacuation to eempty my bowels. Even if I don't need to go - if there is anything in my rectum. I remove it. I don't think this is particularly healthy and probablymeans the muscles are getting sluggish but I have been trying to prevent needing to go when there is nobody here. I have been managing my constipation so that I Stay slightly constipated, and I don't think this is that good. Problem is that when I manage my constipation properly I need to go when I need to go, and sometimes that is urgent!

Id really like live in care but I just don't know if it will happen. My solicitor is fighting for all day. I bet they will just say to use pads - but also who wants to be wearing pads when the problem is mainly a lack of assistance and not full blown incontinence? There is another option which is NHS care but this is hard to get and nobody is pushing it forwards!

Any thoughts or ideas? I ordered some fecal pads and might start wearing them (instead of grabbing one to use when needed) and I might stop attempting the big clean up and knackering myself + to hammer it home to social services that I need the help.

Anyone here in the UK have bowel urgency and help from social services or nhs care? Thanks.

One of our members, JD, manages fecal incontinence with daily enemas. If you could convince a caregiver to administer enough enemas to give you 12-18 hours during which you can feel free from fear of an accident, your life might be easier.

I too have difficulty with bowel management; however, my situation is so different from yours that there is little in it that would be useful to you. Good luck.

What's getting to me at the moment is that I think if I had access to the toilet or assistance on hand to get my bedpan I'd be fine. I'm going to use it as more evidence for always having someone herr to help. I also would like to find a way of managing things where my bowels don't get lazy and I am still the one initiating the movement rather than an enema. I've emailed the district nurses so hopefully they will come out soon to discuss it.

When it happens it is a very big bowel movement so I think my bowel might be getting quite constipated/impacter and then at a certain point the movicol does its job and my bowels spasm to release it. If I could get to a point of a regular routine of normal sized bowel movements it might help.

I don't think I've been managing my constipation brilliantly. I take enough movicol so that I am still slightly constipated and then use manual evacuation techniques to manually empty the rectum....but often this is just small amounts of very hard poo and I still do it just because I don't want to risk needing to go when there isnt someone here to help.

Currently I'm house/bedbound so I think it is more of an urgency issue and I would make it on time if I had the assistance. Of course if I am still like this when I get well enough to go out, I will be at more risk of accidents anway - especially if I stay needing to use a hoist. There are some toilets in the uk with hoists, special toilets and adult changing benches, but not many. Best to get it under control before then I guess. It has occurred to me that the constipation could actually be doing damage.

Are you able to eat and drink normally (i.e., not using a feeding tube)? If so, your constipation may be a result of your diet. You may not be eating enough fiber. You may want to discuss that with a dietitian. Also, inadequate intake of liquids can cause constipation.

Do you work with a physical therapist and/or have a program of exercise appropriate to your bedbound status?

What is your diagnosis/prognosis? Are you expected to be able walk at least with a walker or cane at some point? I wish you the best.

Wetters

No specific prognosis. Some improvement likely.i am improving. I don't know about walking because I have severe orthostatic intolerance. Before this I used a tilt and recline powerchair for a few yearsI've been bedbound 2 years.

I have severe ME/CFS AND that caused an intolerance to any excertion which basically means I wouldn't be able to tolerate any physio right now.

I do eat orally. I am on a special diet which has no grains except occasional oats but a lot of vegetables so that should be ok fibre wise. I want to increase the veg intake though. I think my constipation is due to immobility, med side effects, and ibs. I drink a lot of water. 3.5-4l a day.

As I am on antibiotics I am hoping that the second accident of the week was just due to that but I have asked my district nurse for input. Hopefully they will get back to me!

tangerine,

Patrick mentioned that I use daily enemas to manage my bowel incontinence very well. However, please do not have a caregiver attempt to give you an enema unless you receive prior approval from your physician. If your physician gives you the go-ahead, you may wish to have your caregiver read my white paper on the use of enemas to manage fecal incontinence that is in the articles section of this site. Otherwise, send me a PM and I will be pleased to send you a copy.

Best wishes,

--John

Update is that im back to having hard constipated poo after the antibiotics. District nurses say I shouldn't be doing manual evacuation so much and should aim for getting my stools soft enough. Problem is that means risking accidents between care visits. It's healthier for my bowels though so in going to try and become less constipated and I've been advised to take the rest up with social services. Hopefully it won't be as many accidents as I fear. I also need to discuss it with my gp. Basically feel overwhelmed at the amount of layers to this issue. 6 accidents in 10 days. 9 of which could have been prevented if I had timely assistance.

Tangerine, I don't believe you've mentioned what kind of diet you've been maintaining. Like the others mentioned, adding fiber (even if it's just fiber pills) can go a long way in making your bowel movements easier and more regular.

Try and eat more vegetables, absolutely stay away from processed foods, refined grains, sodas, and sugary foods. All of these will absolutely make you have harder and less consistent bowel movements.

I eat a stone age diet. No grains, lots of vegetables so low of veg fibre, high fat, normal protein, low carb. My problem is slow motility and meds making that worse I think. I'm averaging one accident every 2-4 days. I've been advised not to let myself get constipated but that means accidents if no carer is around. Apparently that is a social care issue not a health issue so nurses can't do anything. I need to talk to my Dr about it asking for help and for him to contact my social worker but not had guts yet. I can't find the words. He's not very supportive.

Balancing how much movicol to take is super hard. I am trying dulcoease too. Definitely not as constipated following the antibiotics so part of this is my gut being unhappy. Lots of probiotics.

I wish you great success in managing your situation. In many ways your problem is just the opposite of mine; however, reading this thread has been very useful for me. If your doctor is supportive, use that support to get the assistance you deserve. Keep us informed.