I Can’t Hold My Pee!!

Lately, I find myself wanting to talk about the stuff we don’t ordinarily talk about. Things that might embarrass us.

Things that other people might be experiencing, and feeling alone with. I choose to share my journey so that no one has to feel alone on their own.

Incontinence of the fecal kind is sometimes expected in IBD. Not accepted, but expected, on occasion! Many of us will have been there.

More frequent and urgent urination

But today, I wanted to talk about my bladder; how I THINK I got here, and how that relates to IBD. (Obviously, I’m not a doctor.)

I had my first surgery for UC in 2007. I had an indwelling catheter for about five weeks. If you’ve had a catheter in for any length of time, you will probably know what I mean when I say that I experienced an odd pressure in my bladder and a burning sensation in my urethra when urinating once it had been removed. That’s normal.

It’s also normal to feel an urgent need to urinate for the next 48 hours because the bladder and urethra are weak.

However, for months after, I had to urinate more often, and the urge was often sudden. My mum said that my bladder would likely have shrunk because it hadn’t needed to hold urine for those five weeks.

Is this a result of constant catheters?

Do bladders shrink that quickly? I honestly don’t know, but that seed was planted so that’s what I went with. Over time, I was able to hold it for longer and longer, but I was never able to hold it for as long as I’d been able to prior to that initial surgery.

14 months after the first one, I had another surgery and another catheter. 8 months later, another. So, I assumed that it was simply a case of the constant catheters.

In later surgeries, I’d only had catheters for minimal amounts of time, so I didn’t notice any change. It was manageable, so in my mind, it was OK.

I didn’t do a lot away from home. I mainly socialized locally in pubs and cafes, and I worked a 20-minute walk from home. So I don’t think I realized that it was really a problem. As long as I emptied my bladder before I left the house, I was never really close to being caught short!

The impact of ureteral stents

In 2018, I had my j-pouch excised. The decision was made to put ureteral stents in so that the surgeon could avoid my ureters during surgery. He had done the previous one in 2014, so he was aware that there were a lot of adhesions in my abdomen, meaning everything was stuck together.

I had the stents put in a week before the surgery, and they removed them almost five weeks later. The entire time I had them, I could not hold my pee.

I would feel the urge and then have seconds to reach the toilet. If I didn’t, pee would actually escape! When I got there, barely anything came out. This was constant. All day and all night.

It felt like my bladder hated ANYTHING being in it. Fortunately, I lived in a flat, and the bathroom wasn’t far from the bedroom.

Trying to unplug my drip, grab my drain, and run to the toilet was a nightmare in the hospital. My abdominal incision and new stoma were not too pleased about it either.

Still struggling with this issue

Two years on, I still can’t hold it very well. I have to plan what and when I drink before journeys, but there’s still no hope of doing more than 90 minutes without a pretty urgent stop.

There’s often a blind panic that I’m going to p**s myself in my partner's car, which makes traveling pretty stressful. Not to mention the fact I’m often already stressed because I haven’t been allowed caffeine before we set off!

More recently, in the evenings, I’ve started feeling like my bladder isn’t empty, but I can’t force anymore out.

Google made a few suggestions, but they’re just not realistic with a stoma and the increased risk of dehydration that having no colon brings with it. I already wake every morning dehydrated.

There’s no way I can go without drinking for 3 hours before bed on top of that...I already limit caffeine to two coffees a day, and my second is no later than 2 pm.

I’m not certain I can even safely use a pelvic floor toner, and they are very expensive! At this point, I think I’m just going to have to accept that I need to buy incontinence underwear for longer journeys.

My next steps to figure out the issue

I know that figuring out what the issue is will be the start of trying to fix it. Do I have a small or overactive bladder? Am I suffering from urinary retention? Is bladder retraining the answer?

I know that I AM going to have to contact a GP about it. First, I am going to log my fluid intake and frequency of urination.

I will do another update when I have something to say!