Tears But No Fears

So I got in touch with the Stoma nurse yesterday and mentioned my sore skin, leak and the fact my stoma seems to have fallen slightly. She asked if I would like to go in and just be checked over as everything she needed was there rather than a home visit. So off we toddled to the Friarage, 00Steve and Ra-Ra stayed in the car watching Mickey Mouse (much to his dismay)

I literally sat down in the consultation room and cried. Just all the frustration of the watery output and the pain/pressure I’m having in my bum just came out. She is pretty damn excellent at consoling me quickly is my nurse, she does help me feel at ease.

She explained that the leak was probably caused because the “spout” had dropped, which is apparently common so she said she would bring down some convex bags which are designed to pull the stoma out and into the bag.



But just in case of dehydration I had to be seen by a registrar. At first I thought yep fine no problem but then I remembered all my surgical consult team were in theatre. Huge face palm moment as I was sat in hospital for 6 hours.

I was asked if I could walk down to x-ray which in the grand scheme of things isn’t far. I said that I probably could and slowly wandered down, whilst in the waiting room I thought I smelt my output but didn’t feel damp. I just put it down to being self conscious about it after that morning. I got up to walk the short distance to the x-ray room and just before the door I got a wave of intense heat course through my body up towards my head. My eyes went black my body tingled and I just froze. The student radiographer bless him stood next to me and asked if I was okay,  the big burly radiographer practically dived out of the room to grab me. Thankfully I didn’t hit the deck, I try and shake the energy out of my hands, it’s something I did when I was still a runner don’t know why mind. They had me sit down before laying me down to do my abdominal x-ray. I was worried that it would be hard to see with my ileostomy bag but they reassured me I would be fine.

Afterwards I was asked to sit and wait for the porter to take me back up. I did until I smelt my output and felt damp. Absolutely gutted I got up and slowly walked into A&E, a poor patient was walking towards the toilet when I asked the nurses could I use their toilet to wash my hands and get some tissue as my bag had leaked. That patient without a seconds thought just let me go ahead of them, to that lady I am entirely grateful. I quickly washed and placed a bit of paper towel to my leak and went and sat back down, thanking the lady as I passed.

I started getting paranoid about my leak so I just got up and walked slowly back to the ward. My stoma nurse had been to drop off the new bags whilst I was downstairs but thankfully said she would come back up. I pulled the curtains around my bed and started to cry. Because I honestly thought about bringing another top and low and behold I didn’t, lesson learned. I had already sent 00Steve home as I couldn’t leave him sat in the car park for God knows how long and I was going to stay at my parents.

A nurse came in and desperately tried to console me but I didn’t want to tell her I leaked, then the nurse practitioner came in and offered pain relief. I accepted that gladly. When my stoma nurse came in she just straight away offered to change my bag for me. Because I was hooked up to IV I chose to lay on the bed for my change, what a mistake that was. I forgot to lift the back of my dress up and my bag leaked all over it. I managed not to cry and held it together quite well.

I’ve now got a powder to put on the sore areas to help dry them out and heal them and a belt to clip either side of the bag to help press it down for a couple of hours if I want the added confidence which I may use the next time I change the bag. She also precut some more bags as I suck doing it! So jaggedy as she does them lovely and smooth circles. She made sure I was okay and then said she would ring me tomorrow (today now)


I got a gown to wear so I didn’t feel disgusting in my dress. I decided to try the only low residue sandwich they had tuna on white. I hate tuna, I managed 1/2 of it but I figure I guess I showed willing right? It was 5.5 hrs since being sent to the ward that my registrar was able to get out of theatre, I wasn’t angry hell I knew they were in theatre and that is more important. She came and apologised the daft thing, I said I had decided to give till the day unit closed at 8 and then I was discharging myself. For the sole reason, I was being kept in for suspected dehydration and would be admitted to a surgical ward which in my eyes wasn’t really fair. My mam had persuaded me not too and just wait on the off chance they reserved the right to refuse to see me again if I needed them over the weekend. The registrar smiled and said they wouldn’t have done but I was right in not wanting to waste a surgical bed when I could just go home. She has prescribed some loperamide and sent me on my very happy way.

I ended up feeling like a flasher though, walking round Tesco with my dad! I had my large neck scarf on and my mac buttoned right up! First thing I did was change into my newly bought pyjamas then eat a cream cake ha ha! I managed to have 4 hash browns and a slice of toast although both my parents wanted me to eat more. 00Steve was just happy I ate something at all. My output FINALLY became thick again after a few hours. My issue now is that it is the output has chosen to I guess the term is “pancake” around the stoma. I can gently smooth most of it away through the bag and down. I’ve messaged the nurse just to see if it’s worth changing the bag and cleaning the stoma or just wait until tomorrow.

2 thoughts on “Tears But No Fears

  1. You poor thing! I’ve been there and feel your pain. Things I learned with an ileostomy: always bring a change, and wear that belt! My ileostomy shrank too and seemed to be very active almost right at the skin level. The belt pushed it out a bit. I found I only got leaks when I wasn’t wearing the belt…or the belt wasn’t tight enough.

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