When My Crohns Went Wrong Part 3

So this is when My Crohns Went Wrong Part 3. So I’ve already written about my experience on ITU & HDU. This is now the rest of my 9-week stay on the Mcculloch ward. I got moved down to a side room from the HDU Unit quite late in the evening after my mum fought for me to have my daughter in hospital with me. The reason being for this is that at the time my ex-mother in law was trying to get social services to take Maisie whilst I was in the hospital as it was too much of an inconvenience to certain people’s time. My lovely mum bless her looked after Maisie all this time to stop this from happening. I will always be grateful to my mum who intervened when I wasn’t at my best.

Mcculloch ward timeline

I got moved to this ward late on Friday night and experienced my first ileostomy leak and I was mortified, thankfully the nurses helped me and changed the bag and got me cleaned up. They got me settled down for the evening and gave me a sedative as I was still struggling to sleep. The next day I saw the Physiotherapy team (Sadists) as I had to learn how to walk again and they had me up and down the ward on a wheelie zimmer frame. I also got my first outing outside in a hospital gown and a wheelchair to see my dog Albert as he had been pining for mummy.

Sunday afternoon I got the biggest surprise. My mum visits and comes bearing a Maisie and a months worth of baby clothing, bottles, nappies, a Moses basket and a buggy. I was so happy and bemused trying to work out what was happening, My mum and specialist care nurse explained after much bending of the rules that Maisie was going to be staying with me until I was eventually Discharged from hospital. The next 2-3 weeks are pretty uneventful. I was still undergoing daily physio to build up my leg muscles and re-train my muscle memory. I was starting to introduce foods back into my diet. The dietician was ordering me food from the visitor’s cafe and not the hospital ward food, to this day I still can’t eat scrambled egg.

Maisie Growing up

Maisie spending nearly 3 months growing up in hospital with mummy

My dressings on the open wound were still being changed daily but over the course of 6 weeks tissue had been trying to grow over the biological mesh but wasn’t taking. When this happens they have to debride the tissue. Now they have several options for this.

  1. Manuka Honey and surgical maggots to eat the dead tissue, suffice to say I completely freaked out at this idea and chucked my water jug at my consultant – I’m not proud of this but the size of my wound at the time measured at 3 cm wide at the top and 12 cm at the bottom pretty much in the shape of a triangle and you could fit your fist in it deep. The psychological issues this would have caused me I can’t even think about due to having a clear dressing on I would have been able to see them. So I refused that course of treatment
  2. To be taken back down to theatre and have general anaesthetic and have it scrapped out, That wasn’t allowed due to the amount of surgery and anaesthetic I had already endured
  3. Was to wing it on gas & air and have the debridement performed in my side room to remove all the dead tissue so they could fit me up to a machine to speed up the healing. I went for this option and laid there for an hour with the medical professionals delving about in my abdominal cavity yet again as the tissue needed to be removed or it would have hindered my healing – rather proud of this as I really wasn’t fazed and gas & air is brilliant

I also discovered that even though I had an ileostomy and my large bowel was on an extended sabbatical that I still had what they call mucus bowel movements from the rectum, they don’t tell you this will happen after the surgery. I’ll be honest and I had a slight panic and meltdown emotionally as I wasn’t warned that this would happen and I was panicking that something untoward was happening.

I finally had my TPN and Hickman line removed in the first week of November and due to the sadists that were my Physio team I was managing the stairs again and due to Adult social services help they had been out and Installed a hand rail on my stairs in the house and had Installed a high bathing chair in front of my bathroom sink as wasn’t allowed to shower or bathe in the bath due to the severity of the open wound. I also had the vac machine attached to my open wound to aid the healing and close the wound more quickly

Then the real fun began. They let me home on weekend release over the course of a month to rehabilitate me back to home life. But I was only allowed home for one night and had to be back on the Sunday at 12 pm or they would hunt me down and drag me back. The first day and night back home were surreal and to be honest I didn’t sleep as I wanted to be safe back in the hospital after 8 weeks in there. The second time got easier, the third one was brilliant and the last time they let me home on weekend release for 2 nights and I really didn’t want to go back. They set what I refer to as my release date for the 10th of December. The reason being for this is because they had to sort out a day time carer and the district nurse team to change the Vac Machine on an every other day basis.

Weekend release from hospital

Weekend release from hospital

I will always be thankful to the nursing team on that ward. They moved heaven and earth to make me comfortable and feel like I was doing well being a new mum even though I was hindered due to the events and constant doctor input and discussions. I also remember the night nurses arguing over who was going to sit in with me during the night feeds so they could play with Maisie. As much as I hated being in the hospital it is one of those things, Shit happens and unfortunately, it picked me and I learnt from it and that is an Innate fear of it going wrong but dealing with it as it comes because I can’t change what happened or what is going to happen.

So that’s the worst of what’s happened and my life has continued on as if it never happened. Its now more like a bad dream rather than a nightmare and I’m thankful that they saved my life even if I do still have ongoing issues with that surgery.

I will continue this journey on in another post about myself managing full-time work, being a mum and 20 months of open wound management and then the fun and games when I had my reversal.

Please feel free to leave any comments

 

4 Comments
  1. I admire you So mucg for sharing this. I know it would have takena lot of strength to do so. Hugs ❤

    • Hi Shell,

      Thank you for taking the time to read my blog. It has been a struggle but its better out than in. It did take a lot of time to come to terms with what happened but I’m now out on the other side and apart from the odd panic attack or night terrors regarding this, I’m pretty much ok. Writing it out and having out in the open is like my form of counselling. Hoping you are well.
      Louise xx

  2. such a strong lady sweetie, i admire you so much, just stay strong and you know im here if you need a chat or a moan lol xxxx

    • Awww Thanks Kayleigh. Yes, I know where you are lol. How are you? Thank you for taking the time to read my blog, You’ve heard enough over the last few years lol. Have they given you a definitive Diagnosis yet or are they still aiming for the Fibromyalgia?
      Much Love
      Louise xxx

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