I’m now 2 weeks in from having my TPE. I was in ccu for 5 days post op. It was 19 hours long and my Crohen’s made it difficult to cut clean pieces for the stomas.
The job done by the ccu team is fantastic but I had a reaction to the drugs with constant nigh terrors (I thought I was a prisoner and being tortured)
Since coming onto the ward 9 days ago I’ve had a few issues with managing meds and laying on my side. I was introduced to fluids only diet last week. This is where everything started.
the NG tube was only removed on Sunday with the option to start on soft foods. Being wary I started with scrambled egg. I ate 2 mouthful. Lunch was solid free food soup and jelly. Evening meal plain omelette, 3 mouthfuls and apple juice. The last of tube feeding was done via a port.
later that night I felt my reflux start which I haven’t had for several years. Settled down for the night and slept on and off. Collectoral team visited in the morning and just as I moved I was so sick with bile. I was proud as every bit went in a bowl on the floor a bag was in. This happened 3 times in front of them. We went back to a fluid diet, but I have been sick 4 times today and all being over 400ml of green bile. On fluids for the night, still sick and in my own room now as part of infection control.
i feel this is a massive step backwards and I’m just sobbing my heart out.
Please tell m3 if this has happened to you and the outcome?
Hi Madge18
I’m so sorry to read how difficult things are for you right now after your surgery.
I didn’t have the extra complication of Chron’s to contend with which must make things more difficult. I was in high dependency for 2 nights before going to a 4 bedded ward. From the very first day I was put on the normal hospital diet, no ng tube and no period of fluids only as my surgeon wanted me to get back to normal as soon as possible. As soon as I tried to eat some mashed up weetabix I vomited, and continued to vomit multiple times a day every day, but they kept bringing me food I couldn’t eat.
I was in hospital in total for 14 nights and when I came home I couldn’t manage food and continued vomiting for around 6 weeks. I lost 3.5 stone before my appetite started to return and I managed to keep down some mashed potatoes. No-one in the hospital seemed to be concerned about the amount I was vomiting and I wasn’t given any diet plan on my discharge. I survived on water and fruit ice lollies. I couldn’t even manage toast.
2 weeks post op is very early. The recovery for me took a long time, even starting to feel better took a long time. Recovery isn’t linear-there are setbacks along the way I think for most people I’ve spoken to who have had this surgery. I had been warned about this but it was hard to accept.
For me, things slowly started to improve and I was able to eat small portions of food without being sick. Some things would make me sick instantly-anything fatty like a bit of cheese for example, but that improved in time by eating bland simple food and being careful.
It does get better but we need to give it time-your body has been through something huge and needs to heal. It can be very frustrating but you have to just go with it and accept it. I can still remember what it was like just after surgery and how difficult it was. Look for tiny improvements and take them as big wins. It was a very long time before I could lie on my side!
Sarah xx
Hi Sarah…. That sounded like the general advice you read online given by uk hospitals. My teams were very honest and up front about time frames being 4-6 weeks in hospital. I had terrors due to pain meds, but seems to be sorted now. The 2 leads are meeting this morning as neither are keen push me back to the ng tube, but also understand nutrition and the need for fluids. They’re going to pump as much they as they can today and come up with a plan.
after speaking with some of you here I went into this with a very open mind.
I will keep you updated. 
️
Hi Madge18
An added complication in my case was that Covid was just starting to kick off. To be fair, I was desperate to get out of hospital, and the staff were concerned about my risk of catching it in hospital, so I was discharged on the day that the first lockdown was announced.
I’m glad that things are different now going through the TPE and better for patients. I know a lot of women who have had the surgery, both here and abroad, and they seem to have had a lot more support than I had. I had no physio to help me recover for example-I just had to prove I could walk up and down a flight of stairs. There was no counselling arranged to help me come to terms with the massive changes I’d undergone. I was put on a gynae ward, and none of the nurses had ever known anyone have a TPE, so they didn’t know how to look after me or change my bags-staff would ask to come and have a look at me as they’d not encountered this before-they were lovely but it felt a bit like being a zoo exhibit! The hospital stoma nurses rarely came to see me, and neither my urology or colorectal surgeon ever came, not even once.
When I came home, myself and my partner were completely alone-I developed an infection in my abdominal wound, but the district nurses rarely visited-they would arrange to come, but not turn up, blaming Covid. That was actually pretty scary-trying to cope while being so ill without help. Looking back, so much of this was really outrageous but at the time I hadn’t learned to advocate and stand up for myself.
I’m glad things are better for you and there is a plan and the scan will happen today. Your care sounds so much better than mine was in 2020 and that can only be a positive thing.
Sarah xx
