My IC/cystostomy saga continues

The last thing I posted about my bladder issues here was in November 2015 ( when we confirmed interstitial cystitis and I had the emergency catheterisation at my urology appointment because, surprise, surprise, I couldn’t pee! I said the urology department was going to teach me to self-catheterise when I couldn’t urinate to avoid the pressure on my kidneys. I’m going quite far back in my memory now but I’ll see what I remember (and find my tweets from that period!).

The first appointment about intermittent self-catheterisation was in December 2015. The amazing urology nurse–who has been my absolute rock throughout this whole thing, I tell you!–gave me a bag of catheters for my Christmas present, lol. She got the catheter in much more easily than at the cystoscopy appointment because the emergency catheter and scope had stretched my urethra quite a bit. Still painful though. I managed successfully myself at home the first time but soon I was spending as long as an hour struggling and left bleeding, still only getting it in rarely. Around the start of 2016, I had another urology appointment and I was to keep practising with the intermittent catheters. Indwelling catheters were mentioned but as I didn’t need the intermittent catheters every single time I needed to urinate, it was more of a last resort thing. I had a renal scan to double check my kidneys weren’t damaged due to the pressure from backflowing urine (kidneys are at risk with lupus anyway) but they looked quite good, thankfully.

In November 2016, I still had no more success with the intermittent catheters, but my urologist and I agreed I wasn’t quite at the stage for a suprapubic catheter/cystostomy, especially because the surgery would be particularly complicated for me. I was in limbo for quite a while with my issues, where it just seemed like I had to live with it, and perversely “hope” it got worse to the point where a cystostomy would be indicated.

In August 2017, I was put on the list for the suprapubic catheter. Despite the extra complications, the urologist and I agreed that it’s my only option now. So I basically just had to keep going as I was until then.

Or not! In October 2017, my bladder decided to fail a week or so before the pre-op assessment for the cystostomy surgery. I went to the hospital in the middle of the night before things got really bad as I remembered the horrendous pain from last time and didn’t want to repeat it! There was about 600 mL of urine on this occasion, which is still pretty significant–normal bladder capacity is usually quoted around 300-500 mL–but I’m glad I hadn’t waited until it got worse. For comparison, I saw one quote that the “OMG I must find a bathroom NOW” point is about 400 mL.

As usual, it was a lot of trouble for the docs to get the emergency catheter in, but we got there in the end and I was sent home. Apparently I would see my urology team in a week or so and get the catheter out, but it was decided that it was too risky that I would need emergency surgery if we took the catheter out and then my bladder retained again. I’m not going to lie–the first week or two with a urethral catheter was horrendous, but most of that was probably the UTI I got pretty quickly! I was having constant agonising bladder spasms which in turn were causing urine to leak around the catheter (called “bypassing”). The constant leakage was burning my skin. I practically sobbed down the phone to the district nurse for her to come to my house and take it out. I didn’t leave the house until I had the pre-op assessment for the cystostomy anyway, but of course that was just the usual pre-op questions and tests.

While I’d been at the hospital that day though, I popped into the day surgery unit hoping my urology nurse would be there. She was and she saw me despite me not having an appointment. She is an absolute life saver. She changed my leg bag to a valve, which was much easier for me to deal with. (Also I had my Masters graduation the next week and I’d been very paranoid about graduating with a bag of urine strapped to my leg! As I use a wheelchair, as the bag got full, it would be visible hanging out below my trousers.) The valve has various benefits over a leg bag, such as allowing the bladder to keep its tone as it fills until you empty with the valve rather than constant drainage into the leg bag. This can decrease infections as you’re flushing out the sediment from the bladder as well. I had basically been discharged from the emergency department the night it happened without any info, but the urology nurse got me all sorted with all the equipment I needed, with plenty of valves, spare leg bags, night bags as well as a night stand. She also told me she’d write to my consultant so I could get the cystostomy surgery before the urethral catheter would need changed in 3 months, as it is such a difficult and painful procedure for me.

Alas, this is where I am now. The catheter is due to be changed in a week or two and I haven’t heard anything so I will chase it up with my doctor. I don’t have a date for the surgery yet so it’s extremely unlikely it’ll happen before I need the urethral catheter changed! I am coping much better with the urethral catheter though. Although it does get difficult every now and then, if I was to have this forever, I wouldn’t mind too much. One major benefit of the suprapubic catheter though is fewer infections! I’m currently taking anti-cholinergic tablets for the spasms and they do help although it’s miserable combined with the Sjögren’s as the pills exacerbate it! I’ve had lots of the problems: leakages, forgetting to close the valve (of all days, I did this the first time at my graduation! Felt wetness on my trousers and just though Uh oh!!!!), spillages when changing the valve, spillages when emptying the night bags… I still have blood clots and blood in the urine quite a bit now.

I will detail the surgery here when it happens; you can all go through the journey with me. 🙂 I have watched many videos of others with all sorts of conditions who have a suprapubic catheter and I feel like I have a good idea what to expect although you can never be completely sure until it happens!

Honestly, I never thought that the lupus would affect my bladder this much and that I’d have a suprapubic catheter ever never mind within about five years of the onset of my bladder issues. Sometimes with this disease it can feel like “Oh, God, what body part is going to stop working next?” But we just have to do what we can with it and deal with things if and when they come.

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