The Forgotten Stoma

I live in the North East of England with my Husband and two dogs Dolly & Bertie.

My hobbies are hanging out with my friends, doing crafts like embroidery and sewing, listening to music and podcasts especially the crime ones.

My health has been up and down for many years but unknown to most I was suffering with Bladder disease and chronic pain from a young age. I was first seen by a Urologist when I was 16 and it took around 11-12 years for them to diagnose me with- Interstitial Cystitis/ Painful Bladder Syndrome.

IC/PBS is incurable and in some cases becomes unmanageable, I was one of those cases after nothing but failed attempts of trying to manage it. My Urologist advised the only option I have is to have the bladder removed and a stoma formed.

If your interested in knowing more about my story then please read on...

My Journey

From a very young age I remember suffering with recurring Urinary Tract Infections. They were always painful and got worse as I got older. I was referred to my first Urologist at the age of 16 for further investigations to try and determine what was causing these constant infections. The test were very invasive and very uncomfortable leaving me in intense pain for days.

My symptoms became worse over time and more permeant, I could suffer for a matter of hours to a matter of days. All of the tests kept coming back clear which was really hard to hear as sometimes it made you feel it was all in my head.

I had horrendous pelvic pain where it felt like there was a bowling ball in my bladder, when I urinated it burned my urethra, I had the feeling I needed the toilet over and over again and the fatigue that came along with it was debilitating. Antibiotics offered me little relief at the beginning but over time they were pointless. My symptoms were leaving me bed bound, I wasn’t able to go out and enjoy my life with my friends. I was desperate for answers and used to sit researching for answers, this is when I came across Interstitial Cystitis / Painful Bladder Syndrome.

I was diagnosed with IC/PBS after Chronic Urinary Infection was ruled out. I went through treatment where they inserted catheters into my bladder and administered medication into my bladder weekly to try and repair any Bladder lining damage. When this failed and only gave me actual infections I was referred to a specialist. In 2021 at the age of 28 I was offered Bladder removal. I was told the surgery was major and that there were risks if I was to go ahead. At this point in my life I had no life and was taking a range of medications ranging from morphine, nerve pain meds and antidepressants so I welcomed surgery with open arms.

On 8th February 2022 I went through 7 hours of surgery where they removed my Bladder in two bits. My surgery was open so a large incision was made from below the belly button to the top of my pubic bone. Recovery was hard and surgery has left me with a few little issues but I no longer have any IC pain. When they removed my bladder it was in a bad state, they sent it off to the lab and the results showed the bladder lining was haemorrhaging.

What is Interstitial Cystitis/ Painful Bladder Syndrome?

Interstitial Cystitis (IC) is a chronic inflammation of the bladder wall, which can also be diagnosed as Bladder PainSyndrome (BPS). The cause of IC/BPS is not yet known, research continues to find the cause. Indications suggest the condition could be due to a defective bladder lining, or an autoimmune disorder. IC/BPS may resemble a bacterial bladder infection, however short term antibiotics are not effective.

Patients may experience some or all of the following symptoms:   

FREQUENCY - Day and/or night frequency of urination.  

URGENCY - The sensation of having to urinate immediately may also be accompanied by pain, pressure or spasms.  

PAIN - Can be in the abdominal, urethral or vaginal area. Pain is also frequently associated with sexual intercourse.

How is IC/PBS Diagnosed?

Usually via elimination or diagnostic tests such as Urodynamics or Cystoscopy. It can take time to obtain a correct diagnosis as symptoms of IC/BPS can be similar to other conditions for example, Overactive Bladder or Bacterial Cystitis or Chronic UTI.

How can you manage IC/PBS?

When you have been diagnosed by a specialist as having BPS (Interstitial Cystitis), there are several treatments that may help.

Not one single treatment works for everyone and you may need to try several treatments to find the one that works for you.

• Medication taken via mouth or passed directly into the bladder via a catheter.

• Physiotherapy, Acupuncture, Talking Therapy, TENS or Pain Management.

• Surgery including cauterisation, Bladder Distension, Botox injections and Neuromodulation.

• In rare cases when all methods of managing the disease fails it may be necessary to remove the bladder.

• Changes to your diet, removing acidic foods and increasing fluid intake.