Bel's Story

Struggles with a broken bladder

How it all started...

My story started back in 2016 when I had my 3rd back surgery however this time the operation was a lot bigger. After the operation I just couldn’t go to the toilet, at first I thought I was just imagining it and thought it was all the drugs which I had been given to help with the pain. I was given a catheter to try and help the situation but as the days went on things just didn’t get any better. As the time went on I would sit on the toilet and try to push to go but nothing came out. The surgeons said they couldn’t find anything wrong with my bladder so I was discharged from hospital without the catheter as they believed my bladder would start working again on its own.

Things just got worse

Over the weekend things got really bad, it got to Sunday and I hadn’t passed any urine all weekend. I rang 111 and said I don’t know if I should be worried but I haven’t passed any urine since Friday. They became quite panicked over the phone and sent an ambulance out to me. By the time I got to hospital I had just under 3000mls of fluid in my bladder.

After a lot of visits back and forth to the hospital, my Urologist decided to insert a SPC (Super Pubic Catheter) as I struggled with a catheter down below. I had also tried the intermittent self catheterisation but my bladder was so painful it was pretty impossible.

I was later diagnosed with detrusor failure (under-active bladder) and nerve damage in my bladder and surrounding area. I was constantly in and out of hospital with infections and I also contracted sepsis. I suffered so much chronic pain with my bladder where I would sit on the floor rocking in pain, it felt like my bits were on fire and that is how I used to describe the pain to the nurses and doctors as I didn’t know how else to describe the pain.

The SPC was a living nightmare for me and the first one I had fell out . The district nurses used to have to change it every four weeks due to the amount of infections I was getting which caused a crazy amount of spasms.

Failed Treatments & Surgery

Then in 2021 I decided to have the Mitrofanoff procedure done, unfortunately I went through the whole procedure and in the end it didn’t work for me, in fact it failed massively leaving me soaking wet in urine that leaked out of my belly button for 7 months.

In November 2021 I eventually had my stoma surgery which was difficult as it was done during Covid, I had to go into hospital on my own with little support which was tough. During the surgery I decided to have a hysterectomy at the same time but they left my ovaries intact to stop me going into early menopause.

The surgery took 12 hours in total and when I woke up I was in a lot of pain which is why I was moved into Intensive care, I was there a full week as I was so poorly. I ended up with a blockage in my bowel known as Ileus- this is when the intestines become paralysed or occluded, preventing the forward movement of intestinal contents. I was treated with a NG tube to drain anything from my stomach and was nil by mouth for the whole of my ICU stay. I spent a further 4 weeks on the Urology ward due to loss of blood due to a bleed and an infection inside of me.

I have had further investigations done by the gastric team but they have said due to having my bowel cut twice they seem to think that is what has caused all my bowel pain problems. I have just had an appointment with gastric dietitian who is concerned I’m not getting enough Nutrition in my diet as I get a very unsettled belly as food can pass straight through me. I am still seeing the gastro team and continue to try new medications / supplements to see if it improves things for me

Since having my Stoma I still get a lot of infections which lead to kidney pain and spasms, I am waiting to be seen at the infection clinic to discuss a management plan. Another side effect of the surgery is bowel and stomach pain which comes on pretty quick when I eat anything, I take medication for this but it is a misery to have to put up with.

Do you regret your Urostomy Surgery?

If I’m honest I do have days where I regret having my urostomy especially when I’m having bad days with it. I sometimes wonder what is worse bladder pain or bowel pain but I can now wear a pair of jeans which I couldn’t do before due to having a spc. I do get a little anxious when I’m out and about wondering where the nearest toilet is so I can empty my bag when I need to but at least I can go out and not have the bladder pain which I had before.

Any advice to someone thinking about Bladder Removal?

If someone asked me for advice about having a urostomy, I would tell them to make sure they have really looked into it all and spoken to there consultant and team an make sure they know everything about the surgery as I didn’t know everything. Speak to others who have had it done and make sure you have support from your stoma nurse. I joined social media groups after I had the surgery but it would be good to join them before you have the surgery so if you have any questions, there is a lot of people out there who can help and answer them.