We’ve been aware that Linda seems to be thirsty, drinking plenty of liquids and also goes to the toilet frequently… so much so that we asked the GP to check her out for diabetes. That’s a quick dipstick test in a sample of urine – tricky to get the urine, simple to do the test! Fortunately she doesn’t have diabetes but it left us wondering why is she going to the toilet so often?
Recently, Linda has had more difficulties, not just in frequency of visits but in getting to the toilet on time. It’s really tricky when someone has a learning disability – how much are they just being lazy/distracted/just not going when they should and how much is a real “can’t keep it in” problem?
We tried being encouraging, supportive and propmting frequent visits but still didn’t know if it was a problem we could do something about so we decided to seek support from a Specialist Incontinence Nurse.
It was great to work with someone who really saw this problem for what it was…. at one and the same time, a slight encumberance and a huge inconvenience. I suspect that for Linda there was also an element of severe embarassment – after all, which of us would choose to let the world know we had bladder weakness issues – and when you carry spare clothing everywhere, that’s difficult to disguise. However, it wasn’t in the least bit embarrassing discussing this with the nurse who was just delightful!
We talked through the symptoms – going to the toilet frequently and always in a desperate rush – before we were sent away for a period of monitoring and measuring. There were two specific questions to try to answer: how often and how much?
The first is by far the easier question though it did require some organisation to always have the notepad to hand, in and out of the house. Apparently it’s normal or typical to go to the toilet between 4 and 8 times a day – Linda was paying at least 12 visits… The principle of urinary frequency is established beyond doubt!
The second question of how much urine was passed each time was altogether more challenging to assess.
After many days deliberating, exploring toilet training aids, looking at every household receptacle to see if it could be used in a different way, we finally went to the Disabled Living shop. Having explained that we didn’t want to buy a commode we were presented with a ‘slipunda’, a discrete, plastic version of a bedpan! We’ve since discovered that you can buy these amazing devices very discretely on Amazon – UK…
or Amazon – USA…
I’d highly recommend them!
What’s particularly useful about this device was the plastic rim of the slipunda allowed it to fit neatly under our toilet seat so that it could be used during normal toileting and contain the urine to be measured more accurately in a plastic jug later. Practical, with the least amount of intrusion, disruption or embarassment. Job done!
It would seem that the volumes are normal, tests reveal normal chemistry so we now have to deal with the problems of freuqncy and urgency… and yes, there is a potential treatment – Vesicare.
We’re now waiting to see if Linda’s irritated bladder will respond to the first line medication recommended. A period of 12 weeks further monitoring, but thankfully no more measuring, is now in progress!
I came across your article in my research (of a different nature) and had a suggestion.
I have both Type 1 Diabetes and Hashimoto’s Thyroiditis (form of Hypothyroidism). I mention this because I have had those exact symptoms recently myself – urinary frequency, urinary urgency, increased thirst (very embarrassing when there isn’t a bathroom close enough fast enough) along with a variety of other seemingly “unrelated” and “odd” symptoms. Sugar levels were all normal or even low, so we were able to rule out diabetic complications.
Wikipedia has a page under “Hypothyroidism” and “Hashimoto’s Thyroiditis” to see the full list of symptoms, as I understand that those with Williams Syndrome can also have Hypothyroidism (I’m not sure which types specifically, but Hashimoto’s, the Dr’s say, is typical for 20-40yr old females).
I recently learned that with Hashimoto’s, because the thyroid is inflamed and under attack by the body’s immune system, a person has Hypothyroidism – too little thyroid, with possible episodes/bouts of Hyperthyroidism – too much thyroid (it leaks thyroid hormone). However, it is usually diagnosed first with Hyperthyroid symptoms. Wikipedia has a page under “Hyperthyroidism” as well, with the symptoms listed.
Rest assured, those of us without learning or communication difficulties, have faced similar situations (I have had to run to find bathrooms, barely able to undress in time, sometimes failing and having to get home and change clothes, etc), and relate to the frustration, embarrassment, and confusion that results in trying to figure out what is “wrong” with us.
Hope this may help in the search for answers.
Hi Karen,
Thanks for this information and insight. More to read and something else to discuss with the nurse. The medication – early days I know – is beginning to have an effect so things are better all round. As an able-bodied and “normal” adult I guess, frustrating as these episodes are you know full well that you need to get to the doctor.
My frustration – and shame – is that it took several months for me to get to the same conclusion with Linda simply because it is more difficult understanding somebody else’s symptoms.
The biggest lesson for me is get over the embarassment and get something sorted – sooner rather than later. These problems can be treated and there are obviously a number of different options, but only if you actually are persistent in seeking help.
Thanks for sharing!