Dealing with Incontinence

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Barry
Posts: 12
Joined: 3 years ago

Dealing with Incontinence

Post by Barry » 1 month ago

INCONTINENCE WEAR IN HOSPITAL

In 2013 an accident left me with spinal injury at C4/5, paralysis, severe spasticity and double incontinence. I have a suprapubic catheter and district nurses give me bowel evacuations on alternate days.

I spent the first 7 months in a spinal injury hospital here in the UK, where remarkably little was achieved: no treatment was offered for my spinal injury, little progress with alleviating spasticity. The hospital never offered me any kind of incontinence wear. I had a bowel evacuation every morning, and for the first 5 months before a suprapubic catheter was installed, intermittent urethral catheterisation by nurses.

Hospital policy dictated that men's foreskins should be kept forward. I do not know the reason. It came across as another loss of freedom - I always keep mine back - although not all nurses insisted on it. I remember a regular night nurse who tried to make catheterisation a fun experience. She would flick my foreskin backwards and forwards 'to make the catheter go in more easily' she would say with a smile as she could see the result of her efforts. Early one morning she came twirling a suppository on a string around her finger: 'I've got a present for you' she said. 'I'm going to stuff it up your bum'. Leakages or accidents were left to chance. In the first 2 or 3 months I did occasionally leak urine via the normal route, but hospital policy preferred washing sheets to issuing incontinence wear.

For the first 7 weeks I was on 'bed rest' - I was confined to bed and turned from side to side every 3 or 4 hours, day and night. I wore no clothes. Not being a matter of choice, I did not find this a pleasant experience.

After 7 weeks I got up into a wheelchair, gradually up to about 8 hours per day. Although I wore outer clothing, underwear, including that for incontinence, was frowned upon. I guess that was to give easier access for urethral catheterisation at first, but even after a suprapubic catheter was installed hospital practice remained the same.

I got on well with one of the occupational therapists. One day, we had been talking about hospital policy on incontinence and underwear when I was practising writing (my hands are affected by paralysis). I wrote something like 'Does anyone in this hospital wear knickers?' She assured me that she usually did but sometimes enjoyed the fresh air 'commando style' when wearing a uniform with a skirt in summer. Next morning, when she was helping me to shower, I noticed that she was wearing a skirt .... I didn't ask.

Not long before I left, a thoughtful nurse intervened. When dressing me she found my underwear and reinstated some kind of normality, as she said at the time, but still no incontinence wear.

Looking back, the lack of incontinence wear in this hospital was a serious fault in nursing practice. Being a specialist spinal injuries hospital, many of the patients would have become incontinent only recently and would be unlikely to know much about how to deal with it. The hospital did not prepare patients for living with it after they were discharged. I thought that their policy towards underwear, or lack of it, was unnecessary and demeaning.

AFTER RETURNING HOME

I first began to wear an incontinence pad and fixation pants soon after returning home from hospital. A district nurse noticed I was wearing no protection and normal underwear which was not really sufficiently stretchy for her to pull down for bowel evacuation. 'We'll soon fix you up with some pads and knickers' she said. And so she helped me deal with what can lead to embarrassing and distressing situations put me on another step towards normality.

Since then I have worn a pad all the time. These are available in many shapes and sizes and with different absorbencies. I wear Abri San Premium 6 (approx. £10 for 34) ref:9378. These are for moderate to heavy incontinence with an absorbency of up to 1,600 ml. Overall, mine measure 63x30cm. The absorbent part is about 55cm. in length and 18cm. wide, widening to 25cm at the front and back. Inside are two elasticated expanding pockets about 2.5cm.deep 18cm. apart extending the whole length of the absorbent area to prevent spillage. The absorbent area is surrounded by a strong margin 2.5cm. wide for gripping to adjust the position of the pad.

The pad is held in place by unisex net fixation pants - Abena Abri Fix large (£4.00 - £5 for 5) ref:9251 or Allanda iD Expert Ultra Large about £6 for 25. Nurses and carers refer to them as pants, nets or knickers. They are similar to women's full-sided net briefs without gusset; because they are high waist and stretchy they can be pulled up past my navel to accommodate a full erection; so too can the pad when positioned forward. I sleep wearing only knickers and pad. My knickers can be washed many times and last more than a month. I rarely pass urine through my penis - occasionally just a small amount which is soaked up by the pad. I have faecal leakage only occasionally, most usually immediately after a bowel evacuation which has not fully emptied my bowel. I am not sure why I have been prescribed a relatively high absorbency pad but I have never questioned it as I feel it is better safe than sorry. My knickers tend to be tight around my groin and often the leg band digs into the area between the top of my leg and my pubic triangle: so I buy a size larger than what would appear to be my size from my waist measurement.

At home, two nurses are needed for bowel evacuation (only one nurse or carer in hospital). One nurse takes my blood pressure and pulse rate. I am turned onto my left side and held there by the nurse. Then the other nurse, suitably gloved, takes my knickers off, pulls my pad aside and inserts her finger into my lubricated anus and into my rectum. Despite having very little surface sensation below my chest, I can feel this clearly, although of course, I can not compare it with what I would have felt if it had been carried out before my spinal injury. She removes as much faeces as she can, cleans me up and inspects my bum for any developing pressure sores. Before replacing my pad and knickers, she inspects the site of my suprapubic catheter and cleans it if necessary. My blood pressure and pulse are taken again. Usually my blood pressure has increased and I have become very warm and sweaty because of nerve stimulation.

FINDING INCONTINENCE WEAR WHICH SUITS US

Many people are reticent to talk about incontinence. Finding the best kind of protection is a big concern for those of us who are incontinent. Brand names are often used instead of generic names; even generic names are not always precisely used with the same meaning. I am often left confused about what kind of wear is being referred to. The sex of the intended user is not always specified on the packet: are we to assume it is for everyone? Sometimes the variety available looks bewildering; so what can be done to give us guidance on how to identify what is best or at least good for each of us?

Something that gives us the protection we need is essential but is not the only consideration: there are also issues of comfort, appearance and cost.

Comfort: our incontinence wear touches some of the most sensitive parts of our bodies most, if not all day and in my case, all night too. My genitals rub against my pad giving a feeling of well-being. Although a pad can not create the excitement of a G-string rubbing my anus, it is nice to have something to rub against without soiling my knickers.

Appearance: many concerns are expressed about whether incontinence wear will be detectable beneath outer clothing; some feel restricted to clothing which will hide the fact that we are incontinent; so a less bulky alternative might be preferable so long as it does the job. There is also the issue of how we feel about the appearance of our incontinence wear when it is seen by nurses, carers, partners or whoever. Certainly manufacturers pay attention to making their products look attractive, in many cases, as close in appearance to normal underwear as they can.

For some, life style will influence the significance they attach to appearance. I spend all day in a wheelchair and all night flat on my back in bed. More active people are likely to be more concerned about whether their incontinence wear is hidden by their outer clothing.

Cost: why pay more than we need to for something that does the job and is of acceptable appearance?

FIVE KINDS OF INCONTINENCE WEAR
There is some imprecision in defining what is incontinence. From puberty until my accident I wore paper towels in my underwear to soak up any dribbles after peeing and leaks of semen. I did not think of myself as being incontinent. (This was long before a spinal injury made me doubly incontinent in 2013.) How much dribbling makes someone incontinent? How often must a considerable accident have to occur for someone to be incontinent?
Many kinds of normal underwear, both male and female, have a double layer or gusset where there is likely to be a small amount of leakage.
Protective wear for those more heavily incontinent seem to fall within five types:
1 There are many kinds of underwear on the market adapted for heavier leakage and marketed as incontinence wear: there are many brands of washable or disposable pants and knickers adapted to take pads or with absorbent areas. Most seem to be single-sex. The pads when sold separately can be single- or unisex.
2 Fixation pants: non-absorbent, used only to hold a pad in place; unisex - no front exit for men; nurses and carers usually refer to mine as nets, pants or knickers. The manufacturers often just refer to them by their brand name chosen to give a hint of what they are, with a pictogram to give a further clue, announcing that they are fixation pants for incontinence pads in microscopic print in 20+ languages on the back of the packet.
Another minute pictogram showing how to determine your size shows a figure of indeterminate gender, leaving the sex of the intended user equally uncertain.
They are more stretchy than is usual for ordinary underwear and so can be expected to take a pad more readily. The pad can be unisex or single sex. It is to be expected that the difference would be in the length at the front. To take an erection, my pads have to be pulled up as far as they will go. The packet does not clear up the mystery of the gender of the intended user.
3 Pull-ups: an expression used in the USA for both children's and adult products; similar to normal underwear but with pad fixed inside and are made of waterproof material. They can be unisex or single-sex.
4 Diapers: can open out flat; large absorbent pad to cover area likely to be affected by urine or faeces; plastic sides with one or two adhesive tabs on each side to hold them securely around the body between the groin and the waist. A term used in the USA for both children's and adult products. These too can be unisex or single-sex.
5 Cloth diapers (USA)/nappies (UK): square, absorbent, washable material held in place by safety pins or something more modern. There are many brands of cloth diapers/nappies shaped like plastic ones with fastening studs at each side. Occasionally they are referred to as 'napkins' but in the UK this is more usual for smaller squares of lighter material used at the dinner table to clear up stray bits of food from around the mouth or fingers or to prevent the soiling of clothes - similar in purpose to nappies but at the other end of the alimentary canal.
Pants made of plastic, rubber or other waterproof material can be worn over any of these types of incontinence wear for extra protection.

Diapers, pull-ups, fixation pants, nets or knickers with many brand names are really all variations of ways to hold a pad of absorbent material in place and to be able to get access to it as needed. The differences between the variety of incontinence wear amount to a few features:

amount of absorbency;

whether they open with tapes or studs (diapers), usually at the sides or whether they are sufficiently stretchy so that no opening is needed (pull-ups or fixation pants);

material used: waterproof (usually plastic or rubber) or textile.

washable or disposable. This is likely to affect cost. My washable fixation pants cost very little. I use only about six per year. The last pack I bought cost £6 for 25. I use one disposable pad per day costing around 30-35p.

Whether the pad is fixed to the pants, such as in a pocket, or just covered by them might be significant for those who have an active lifestyle. Some fixation pants, including mine, allow the pad to be moved in them.

Gender: neither the pads or pants that I use indicate on the packets which gender they are intended for; presumably they are for both. This seems to be quite common. The difference in position of the urethra perhaps makes that surprising. My pads are long enough to reach past the entry point of my suprapubic catheter if not placed too high at the back. Some brands of pad are clearly female.



So how can we find what incontinence wear suits us best or at least well enough? A good starting point would be an estimate of urine leakage, and if applicable, faecal leakage, per day. This will set limits on what would work, frequency of changing and whether disposable or washable would affect the cost. Having a suprapubic catheter reduces a great deal the capacity needed for my pad. Bowel evacuations result in faecal leakage being unusual for me.

Some of the advertisements for branded incontinence wear give quite good guidance on questions such as level of absorbency, method of opening, material used whether washable or not and other issues raised here.

Is this in line with what others have found? Do any readers use incontinence wear not covered here?

Lost-in-thought
Posts: 3
Joined: 1 month ago

Post by Lost-in-thought » 1 month ago

"There is also the issue of how we feel about the appearance of our incontinence wear when it is seen by nurses, carers, partners or whoever."

I'm currently dealing with problems involving my kidneys not draining very well. As a result I currently have both kidneys draining into a bag on either leg. It's taking up more head space than I'd prefer, worrying about what other people are going to think. It would be more practical for me to ONLY be worried about actual real problems like kidney failure, but my brain also really wants to go and worry about what other people are thinking. I know nurses are professionals, but I still sometimes wonder what they're really thinking.

Barry
Posts: 12
Joined: 3 years ago

Post by Barry » 1 month ago

I try not to worry about things I can not change. My condition is such that nurses and carers are required to do many potentially embarrassing procedures for me but they chose the job and I can't help being as I am.

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