When My Crohns Went Wrong Part 2

This is about When My Crohns Went Wrong Part 2. After the traumatic 3 week period spent on ITU then another 4 days being monitored. I was finally moved down to the HDU unit which is a unit designed to look after you on a one to one basis as you are still a high risk of going one way or the other.

This next instalment covers what I remember from that period along with some incidents my mother remembers vividly.

HDU Timeline

I used to get jealous of the nurse bathing her

I used to get jealous of the nurse bathing her

I spent the grand total of a week in the high dependency unit. This was quite a struggle for me as this was when they told me my leg muscles had lost all muscle memory. I  also had a few days to let everything that had happened to sink in along with all the visual open wounds, drains and lines coming out of me.

So for those of you that have had open wounds they are not a walk in the park. The size of the wound went from just under my breastplate in the shape of a triangle to my pubic bone. This wound had to be cleaned out and packed daily due to the size and the amount of exudate leaving the wound. Turns out during this time I’m allergic to the adhesives used in the wound dressings and the whole of my abdomen is covered in blisters. After a number of drugs, I was being pumped with. It was decided that I was to use Gas & Air for every dressing change as the majority of nerve endings were damaged. My one funny memory from all of this was me taking the pee out of the consultants changing the dressings with bottle green gloves and aprons as I was a high infection risk, I’m well known for wolf whistling them whilst on the ward.

Day 3 on HDU they finally decide to get me out of bed and into a chair. Bambi on ice is the only way I can describe it. My legs wouldn’t work and I actually face planted the floor with drains and catheter still attached and it took 3 nurses to pick me back up. The shame and humiliation I felt were upsetting and degrading but I outwardly laughed it off. Being 24 years old and being given a zimmer frame and needing a nurse either side to hold you up dents your pride but it’s part and parcel of the recovery process and was needed so I could get to my daughter more quickly.

Maisie living in hospital with mummy

Maisie living in hospital with mummy

Day 6 on the HDU unit and they tell me I’m being moved to the Mcculloch ward the next day. I wasn’t aware but my Mum & Nan had been going 50 shades of mental and protective mummy bear due to face plant incident and my mental breakdowns every time Maisie was taken home as was only allowed 2 hours of visitation a day and they were taken up by whoever was bringing Maisie in to see me. 

I was still only on fluids at this point and by now I haven’t eaten actual food for 5 weeks and they are talking above my head about reintroducing food whilst being on the TPN feed. My First experience with food that day was a yoghurt, it still had the bits in it and I managed to projectile vomit all over myself but at least I had some actual food of sorts.

The worst part of the HDU unit for me was learning everything all over again. Stuff that is so natural and part of everyday life and I couldn’t do it. The dressing changes, constant monitoring and overhead talking didn’t bother me. It was the loss of independence for me that upset me immensely.

The fact that with being ill and incapacitated and my daughter being taken away from me every day made me struggle mentally. I believe the crying everytime she was taken away is the only reason I ended up with a side room down on the ward and the only reason I got up and out of bed aided by nurses and zimmer frames. She is the sole reason I recovered the way I did. There’s no other explanation for it other than I’m stubborn, pig-headed and had a reason to fight after such a traumatic experience.

So this leaves the story to be continued with my shenanigans on the normal ward for a later date.

Any comments or questions please pop them in the box below.

 

9 Comments
  1. Hi Louise

    You are an absolute fighter and an inspiration. Well done you for putting this all down for us to read. There’s things I can relate to and others I can’t. I hope if I have to go though some of what you have that I’m brave enough to do it.

    Cheers

    Elaine

    • Hi, Elaine.
      Thank you so much for taking the time to read my post. My hope is that in writing all that I have experienced will in some way help others that may have been trough the same thing and not had the help that was needed.
      Hoping you are well. As for the Vedolizumab it is being a sod and I currently have conjunctivitis lol
      xx

      • Hi Louise

        I like the blog, it is definitely helpful especially since I’ve only been diagnosed just over a year. Sorry to hear about the conjunctivitis. I’m as well as can be. Realised last week that I’ve been on steroids for 3 months so hopefully the vedolizumab will get me off steroids without flaring. I’ve only been mildly flaring since January. Severe bloating tonight and feel shattered. Just another day with IBD really! 😊 2 weeks today and I’ll get my first vedolizumab infusion. Will keep you updated. Xx

        • Yes please do keep me updated Elaine. I have my third infusion in May, I’m also due to start Iron infusions due to being severely anaemic and my ferritin levels are through the floor. So another day on the infusion ward for me sometime soon. I’ll have had Crohns 14 years this December, So have my one year anniversary for my Stoma in November and another anniversary for my Crohns lol. Hoping they can get you off of the steroids with the aid of Vedolizumab
          xxx

          • Hi Louise

            Yeah I’ll keep you posted with the vedolizumab. I had an iron infusion 2 weeks ago and feel better for it. Fertility is something that does worry me. I’m 36 and now just think it’ll never happen.

          • Hi Elaine, If you are ever worried about your fertility then please speak to your consultant and see what can be done. 36 is never too old, Some women are having their first child at 40 years old. I’m so glad the iron infusions have made you feel better. Im waiting for confirmation to start mine.
            Many Thanks
            Louise

  2. Hi Louise

    That’s me on the waiting time after the vedolizumab. So will hopefully get out of hospital after 1pm today. Feel fine just now, just a bit tired. But still got work to go back to this afternoon so need to get myself moving and get on with it. Will let you know of any side effects kick in and how the next couple of days go.

    Cheers

    Elaine

    • Hi Elaine,

      That’s great to hear that you’ve started your vedolizumab treatment.I’m back tomorrow for dose 3, So will keep you updated as well. I just always feel really tired for 24-48 hours after the treatment and sleep. It’s why I always have it done on a Friday so I have the weekend to recover. Hoping all is well your end.
      Thanks Louise xx

      • Hi Louise

        I felt slightly achy on Tuesday afternoon after work and have had a headache every day since and felt slightly nauseous but other than that ok.

        Let me know how the 3rd one goes.

        Take care

        Elaine

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