This is a detailed account of the 27th July 2015, when I had my bladder removed, an Ileal Conduit (Urostomy) formed and revision on my Ileostomy prolapse. Although I did acquire a few complications I still believe that it was the BEST DECISION I have ever made!
**Disclaimer: - Not everybody will have these complications after surgery. I do not want this post to scare anybody but I felt I needed to write a detailed account of what I experienced, how I overcome it and why I have NEVER regretted making this decision **
Briefly my life before my Urostomy Surgery
For the last 7/8 years, I have had an SPC and have suffered from horrific spasms that felt like my bladder was given birth to it! The year before Surgery, I was on my knees physically, emotionally and spirituality. I could not use the SPC with a flip-flow valve because the spasms were too much so, I attached a leg bag and allowed for the urine to flow free.
The beginning of 2015 I was getting bad haematuria (Blood in the urine) and after a Cystoscopy and biopsy, they discovered my bladder was extremely small and very damaged. The biopsy showed that the cells had mutated and I had early stage Bladder Cancer so I needed to have the bladder removed. Usually, I don’t tell people this bit due to it being caught so early and I don’t think of myself as having cancer but see it as a consequence of long-term catheter use and how my body had reacted to it. I would just like to point out that not all people develop cancer because of having a catheter. In my circumstances, it was the amount of damage that I had and my rare illness. They also told me that the way they removed my bladder and peeled it away from the uterus and the lymph node removal that I can never carry a child. So 2 weeks later after the biopsy results came back I was scheduled to have my bladder removed and an Ileal Conduit formed.
I arrived at the Sandbanks Suite with 2 crutches and I was in so much agony unable to walk properly. I was very anxious that day but mainly I couldn’t WAIT to get rid of the SPC and my bladder. I knew deep down everything would be better and I would get a portion of my life back.
The surgery took 8 hours and my body struggled due to the Autonomic Neuropathy and POTS my blood pressure kept dropping during surgery and my heart stopped a few times, I woke up in ICU. When I first came round after a few days my bp was 50/35 and Jules my anaesthetist said it was touch and go during the op and I scared him a few times but I pulled through with my 3 consultant surgeons, registrars, 2 anaesthetist’s and nurses.
Eventually, I got transferred to HDU and I started to come round. A really vivid memory I have is waking up and thinking there was a ghost at the bottom of my bed due to the curtains having red hands on them. It scared me so much!! I was sad because my dad couldn’t come and see me because he had the flu and they wouldn’t let him in but because of what happened in surgery.My brother surprised me and flew down from Durham to be with me for a few hours and that was so lovely. I was recovering fairly well and after a few days I moved to a Urology Surgical Ward and even managed to sit out in the chair for a bit.
Ward 15 Urology Surgical Ward
This was my home for 3 months but at the time I didn’t realise I would be in for this long.
After 10 days I was doing really well getting out of bed and walking around, changing my Urostomy and I started to feel stronger. I was about to be discharged when I caught Clostridium Difficile (C-diff) off a patient and so here began the complication after complication which resulted in my isolated/lock down stay.
After I had contracted C-diff the Infection & Control Team were present on the ward every day for a couple of months and put very strict rules in place to make sure it didn’t happen again. I appreciate that the staff were honest with me and put their hands up instead of brushing it under the carpet.
C-diff is short for Clostridium Difficile and is not a very nice hospital infection for the average patient, let alone if you have an Ileostomy and Short Bowel Syndrome.
The medical definition is a bacterium which infects humans and other animals. Symptoms can range from diarrhoea to serious and potentially fatal inflammation of the colon. In order to diagnose C-diff, there needs to be a stool sample and blood test. In my case, I was positive for the toxin enzyme A& B toxins. Also during my Glutamate Dehydrogenase (GDH) test, it detected the presence of an antigen that produces high amounts of C-diff. So I was given 3 IV antibiotics to treat it. These were Metrondiazole, Vancomucin and Fidaxomicin along with lots of fluids and potassium/sodium infusions.
So...that day I was packing to get ready to leave the hospital the next day when I started to feel horrific and my bag was filling up every half an hour and that morning I had 6 accidents. I felt so weak and sick that I couldn’t even change the bag myself. The smell was HORRIFIC and I started losing consciousness, I had a temperature, was dehydrated and just felt like death warmed up.
My mum was with me and luckily she pushed for them to do a stool sample because of the smell and was concerned that I couldn’t talk and had lost capacity. I was extremely dehydrated and that day Bob alone had emptied 5 litres of output. The nurses did not know what was wrong apart from one experienced nurse that recognised the C-diff smell and straight away bundled me into a side room and put me in Isolation. Isolation involves not being able to leave the room and when anybody enters they have to wear apron and gloves with no touching or hugs. Due to having C-diff then whenever I get admitted now I am put in a side room to start with because C-diff it never fully leaves your body. I quite like having my own room when I am admitted now so that doesn’t bother me. Apart from not being able to leave the room and get food!!
This is not an exaggeration but my output was actually BRIGHT GREEN and looked like methadone. I was emptying so much that the stoma nurse gave me a high output drainable ostomy pouch which I could connect to a 2-litre night bag usually used for urine. I was on my knees and never felt that awful in my life but having the night bag was such a godsend. I could sleep through the night and I didn’t need to empty it myself. The nurses did so I could just rest, sleep and recover. Not nice for the nurses because the smell was nothing I have ever experienced before in my life. Due to this Kevin, the Healthcare Assistant of the ward nicknamed me ‘Stinky Winky!’ His banter and humour kept me going through the 3 months isolation and I made good friends with the nurses during this stay.
Due to my output being so high. I was extremely dehydrated, vomiting and unable to eat they put me on TPN.
What is TPN?
TPN provides all nutrients and roughly 2000 calories that go straight into the vein, bypassing the usual process of eating and digestion. The TPN solution contains glucose, salts, amino acids, lipids and added vitamins & minerals.
My veins had collapsed so I need 2 PICC lines one in each arm. One for fluids/antibiotics and one hooked to up to TPN.
Vitamin k is given as a supplement infusion on top of the TPN to stop re-feeding syndrome that can occur. Every time I was hooked up to this I could taste the disgusting metallic taste in my mouth and did dread this infusion. Due to the TPN bypassing the stomach I still felt starving but I was so poorly it didn’t really matter. When eventually I was allowed to eat I remember just craving and loving the taste of peaches. It was heaven. Although I was taking 2000kals a day from the TPN I did loose a lot of weight.
Introducing food again was hard and I had developed pseudomembranous colitis because of the which didn’t help and can flare up today. We also believe that this episode is why now I have the colitis but also diverticulitis in my large bowel. Unfortunately, a colectomy isn’t an option for me because the surgery is too big and due to the kidney failure my body wouldn’t cope.
Other complications that occurred
I also developed sepsis twice which involved a trip to the ICU unit for a few days and I had a couple of cardiac arrests because of it.
As discussed in my last post during this stay I had Stenosis of my Stoma. After the treatment for C-diff while I was admitted my stoma went on strike and I didn’t have any output for a long time. Hence why 2 weeks after my discharge I had to go back in for more surgery on this. I believe I also went into kidney failure here as well but they did recover when I got better.
How it affected me emotionally and mentally
Being in isolation for those 3 months not able to hug or kiss my loved ones, everybody wearing aprons and gloves I felt....dirty. Even though I knew why they had to be gowned up I still resented it and the horrible c-diff smell didn’t help this feeling. This is something I still battle with today especially with the prolapse and accidents but I work through it. It was a hard time but I got through it and since getting rid of the SPC I can say from the bottom of my heart it was the BEST decision I have EVER made regardless of all the complications I acquired.
Being stuck in that room not allowed to leave for that long forced me to face myself and a lot of past issues came to the surface. After I got discharged I did start abusing the pain medication prescribed to me. But now I see it was to cope with the trauma of this stay.
I felt so poorly that I don’t think I read until the last month and only really managed to listen to music and try to get through a minute at a time. It was touch and go many times but I did it with help from my AMAZING friends and family that still came to see me when the smell was horrific and carried me through. I will always be grateful to my ex during this time who came up to see me every day sometimes twice a day. I cannot take that away from him and he did step up. Below is a picture of a very close male friend while I was in isolation, who has been my rock since meeting him.
When we are given decisions about removing organs and having a stoma regardless if it is for a urostomy, colostomy or ileostomy, it is always hard not knowing the unknown. It is easy to project but even though I had a hard time I would still say my life is 1000% better and I cannot express that enough!! The gratitude I have for ALL the hospital staff from the cleaners to the consultants is enormous. All of them helped me survive and get through this time and now I am thriving ☺
Thank you again for reading my post and please feel free to leave any comments.