I’ve talked about my bladder issues before, but for the purpose of this post, I’ll do a recap.

Bladder symptoms and backstory

Since my last surgery, to remove my Jpouch in 2018, I’ve struggled with a frequent and urgent need to pee. Because I’d already had six bowel surgeries, AND because my surgeon had seen the mass of adhesions and scar tissue inside my abdomen during the previous surgery, the decision was made to put ureteral stents in prior. This meant the surgeon would be much less likely to catch them during the excision when separating my Jpouch from the surrounding organs and tissue. I’d woken up from the surgery with an indwelling catheter, which is pretty standard.

I’d had a rough time with the stents, so I didn’t know whether my bladder troubles were related to those, or maybe even the catheter.🤷‍♀️ For a while, I assumed it would settle over time like it had after previous surgeries.

If you read my blog about healthcare anxiety, you’ll understand why I kept ignoring it. Hoping it would improve. It didn’t. In fact, I then started to feel like I couldn’t always empty it fully either. I have to get up multiple times every night to urinate, on top of having to get up to empty my ostomy bag.

Getting in touch with the GP about bladder symptoms

In March this year, I’d had enough of being anxious and stressed about outings, travelling, or even going for a walk, so I contacted the GP. He wanted a urine sample and said I’d need to go for an ultrasound if the urine came back clear. Of course, it did. It took me another 20 days to even get a follow-up appointment, just to say that I could see on the online system that the urine sample was fine. He said he would arrange an ultrasound. I’d already told him that it was impossible for me to hold my urine for any length of time because it’s really painful, so how he thought I’d be able to complete a full bladder scan is beyond me… Anyway, I went, and my bladder wasn’t full even though I’d attempted to fill it. The irony! All we could do was check if it was empty when I tried to empty it. So all I learnt from that scan was that I could fully empty my bladder, on that occasion. Obviously, I ended up desperate for a wee on the way home! 🤦‍♀️

As usual, no one from the GP practice thought to follow up with me, and I chose to leave it for a few months whilst I mustered the strength to talk to another moron.

I started researching and talking to people in online IBD and ostomy communities. I began to think that interstitial cystitis may be the cause, as it’s more common in people with IBD

I saw a GP again in August who agreed that it was most likely interstitial cystitis. She said that there isn’t a definitive test for it; more a process of elimination, so she’d rather just refer me for bladder training. I figured I’d try anything at this point.

When I looked into bladder training, it didn’t seem relevant considering I don’t actually have incontinence. I do yoga every day and focus on my pelvic floor during my practice. I felt pretty sure that the problem wasn’t going to be solved by doing more pelvic floor work and trying to hold it for longer periods. What did they think I’d been doing all this time? However, I’m definitely not an expert so I figured I’d have to wait and see.

The continence clinic

I had my first appointment with the continence nurse on August 13th. She asked about frequency, urgency, volume, pain, and discomfort, and then did a quick bladder scan. Then she asked a bunch of lifestyle questions about sexual activity, daily fluid intake, caffeine, alcohol, exercise, diet, smoking etc. I’m sure you know the drill. She and I were both pleased that I was doing everything right. Of course, this is what I do – nerd out with science and education and try to fix myself before actually asking for help!

We discussed my surgeries, and she talked about the extra space (where the rectum and colon usually reside), and the mass of adhesions being a very valid reason for my bladder issues. She did the usual: “Oh you poor thing. You’re so young” and then we moved on to what to do going forward.

Not a single mention of bladder training. I am starting with a medication called Tolterodine and seeing her again in December to review. She talked about other options down the line such as bladder botox and self-catheterisation, but I’m not really thinking about that at this point. One step at a time!

I didn’t realise until I came away that I didn’t have an actual diagnosis. When I accessed my medical records, I found it had been labelled bladder muscle dysfunction- overactive. 

Just in case you want to learn more:
Interstitial cystitis
Overactive bladder