Last hospital one for a while I promise. It was just easier to do it in 3 parts for each time Ben was hospalised long term. My mind works chronologically.
Honestly you couldn't write this.
So Ben came home on just Fortisips before starting the Modulife diet- please see tomorrows blog for this.
When he came home he had appointments everyday for a couple weeks just to change dressings- one of his scars started to come undone it was gross, but it was fine.. On the days he couldnt get appointments I actually changed his dressings and cleaned the wounds. Something I had experience with before as I used to change my Grandads when he had his accident.
Honestly Im pretty good at it- if my career in communications fails or I get bored I'm going to be a HCA or a Nurse, by then I would have had a lot of practise.
We started to get back to some sort of normality again which I find difficult after hospital stays, because each time he comes home something is different. We was trying our best to sort things out to make life easier for ourselves and we were just getting our heads round the new ways.
Then I was cleaning the car for Ben like I do anyway, it's a chore but keeps him happy right? I was bored anyway so it's really not an issue. Trust you get used to the heavy lifting after a while. Ben started to get pain whilst I was cleaning the car so he went to sit and chill.
Long story short, his bowel twisted. Like W.T.F, how why? I mean come on. I know is not Crohns related and it literally is the worst luck. But wow. Hadn't we been punished enough? I felt like we took 10 steps forward and 100 steps back.
This meant 2 more weeks in hospital and an emergency surgery to remove more bowel.
This scares the crap out of me. Ben now only has 2.5m of bowel left. Which is incredibly short for someone with no Colon. Short Bowel Syndrome was another issue that would need faced.
This round of hospital was extra stressful for a number of reasons. Thank you covid, once again I couldn't be with Ben to hold his hand and reassure him. I spent nights awake calling him and texting him to make sure he was doing okay.
Communication between us and the hospital was incredibly difficult. Doctors told us the wrong things.
Ben was in for literally in hospital for 6 hours before I had a call from him to say having he was emergency surgery. I had no sleep. I was petrified. Soon as I was out of bed I was back on the phone calling the hospital. By the time I was up he was in recovery.
This is where the confusion started. So I spoke to surgeon he said it was fine everything went well. THANK THE LORD. Then I spoke to someone else, no idea who at this point and I was told 15 cm of bowel was taken. Which was a lie or a mistake. It was definitely the wrong information though. It was 1.5 meters of bowel that was taken. We was also told he was in a coma for a few days. Im absolutely besides myself, broken and confused. Then Ben called me and he wasn't in a coma!! Sound confusing? Yeah try living it.
It was scary it was horrible, it was one of the worst things to have to go through the anxiety was horrific. It still is now. I keep imagining Ben laying on the tables cold, alone and in pain. It's an awful image. It's hard to comprehend.
I was calling his ward (HDU) and him about 20 times a day the ward were lovely and couldn't apoligise enough for everything we were told. Finalllyyy after another stressful week got permission to see Ben. I bought him a gift to cheer him up. He eventually got moved to a ward which Im sure he was sad about because HDU were amazingly supportive and then eventually he started eating again and came home!
So we have restarted the diet. Yes both of us. Now we have to be so so careful. This is scary for us because what will happen next tome he has a flare or partial blockage? They cant keep cutting away. I keep having anxiety attacks because I am so so scared for ben and so so scared for myself because if I don't know if i could handle it again so soon.
We need a break, so we can crack on with our lives. We've said after 5 years this stoma will get a name.
Everything scares me now- Ben has extremely short bowel. We have to be careful. I am petrified because I love Ben so much it hurts. It's been an incredibly stressful year, and im worried for the future of this bowels.
What even is there left to do? Living with an illness like this- both of us worry like hell. But we just have to enjoy what good we have left and make all the steps to be well .
We just got to appreciate the small things and look after each other. We DO have a very strong relationship. We are stronger than your average couple. We built a special force of love not to be reckoned with. We will beat everything. It is not easy though.
Living with an illness. It takes it out of you and really does test you. Appreciate the small things and make good memories last while you can.
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