Hi there
I have stage 4 endo and due to have endo surgery, stoma reversal, bowel resection and partial bladder removal. This will be my first Endo surgery and will be open surgery.
I’d like some advice on what to expect and what to pack for my hospital stay. As it’s not a laparoscopy il be in hospital for a little while.
Any advice/ ideas welcome…
Hello
Nice comfy lose fitting pj’s is a must on my list. I had hysterectomy last October and it was amazing how much swelling I had. I also had an emergency colostomy as bowel was stuck to my womb. I had that many dressings on my stomach and drains there was no room for them to do the nightly blood thinner injection, they reluctantly did it in my leg. I was in hospital 11 days. I’m due to have the stoma reversed sometime in the next 6 months. I’ve been waiting since January and keep getting told the waiting time has moved. So for now my little gremlin has to stay put. You will be back to the diet you had when you had the stoma, nothing, water, tea then the usual jelly and ice cream (oh joy when they give you that at 8 am lol!) It’s a long road but we can walk it, we are tough, we are warriors, we’ve got this. Good luck.
Thank you so much for your response. How have you been managing with the stoma? I had a bowel obstruction due to the endo so they put the stoma in until I could have the main endo op.
I had a normal diet within a few days of having my stoma put on, I wasn’t given any dietary instructions. Mine is just up from my sigmoid so maybe that’s why.
I recovered fairly quickly from that op but I know this will be much harder and I’m trying to prepare for that. I’m anxious about it but I need my life back so I’m grateful for the chance to have the op.
Il take this as an opportunity to treat myself to some new clothes/pjs…any excuse!
Hello
I was in hospital 11 days, attached to many drips and morphine drip machine, two drains from stomach to drain blood, catheter and more dressings than a mummy! I didn’t move for 4 days. On the 5th day two physios got me up. My knees buckled. I had two drip stands, a walking frame and two drain bags and catheter bag to navigate, and they expected me to walk!!!!! But I did it only a few steps to the room door and back but I did it. The stoma was a complete shock and unexpected by anyone. It was only meant to be a “simple” hysterectomy. Bowel and womb were fused with a plaque of Endo so bowel had to be cut and emergency operation done. They called my husband twice to say I might not pull through. I went down to theatre at 9.30 I didn’t get back to the ward till 7pm. Ive had my consultant for many years and he actually cried at my bedside on the ward, he had to leave he couldn’t talk. I had low blood pressure and an infection somewhere but they couldn’t find where so I had special antibiotics that you can only have so many doses of. I had morphine drip, antibiotics drip, paracetamol drip, then tablet morphine, liquid morphine top up and paracetamol. I was in a pretty bad way. Then I got sent home with 0 pain relief even though they had given me morphine that morning. I almost screamed all night in pain and begged the gp for meds the next day and got oramorph. Stoma has been a pain, the gremlin, as I call it, plays up, hurts, I can’t eat hardly any vegetables as he doesn’t like it, I also have ibs on top of that so that’s fun. I’ve had sores around the stoma edge and granulated tissue that gets sore and bleeds. I have a great bowel surgeon and the nurse team are fantastic. I can wait for the gremlin to go, I want my life back. This thing takes over just as bad as the Endo did when I couldn’t leave the house from flooding everywhere every month or fainting or crippling pain and anaemia. Currently anaemic again due to being unable to eat properly, tried vegetable soup last week to get the veggies in, nope gremlin didn’t approve, stomach upset for 3 days, not going there again. He seems to only like carrots, potatoes, peas and broccoli, he only semi tolerated cauliflower in moderation. And something I had a while ago gave me a bad stomach for a month, so bad I had to go to hospital to see the nurses and then go for blood tests, which was where they found out I was anaemic. Oh the joys. I’m glad it was easier for you. I’ve been begging for diet advice for 9 months, I just get told eat what you want by some others say don’t eat this or that you will get an obstruction. All very confusing and at times scary. Hope all goes well with surgery.
Oh my goodness! I’m so sorry that you had that experience. It sounds really traumatic, like the endo itself is not bad enough. That has freaked me out!
Can your stoma nurse not provide you with info or a referral to a dietitian?
Oh bless you I didn’t mean to freak you out!!!! Nurse just says eat what you want I will soon find out if it likes it or not, I’d rather not find out if it doesn’t like me. Yes it was very shocking, unexpected and traumatic. There were lots of tears and tantrums in the early days. I still get annoyed with the gremlin and tell him he has to go 😊
Hopefully you will have your stoma reversal soon, it’s definitely not easy. I’ve been lucky as I’ve had very few issues.
Have you found your endo issues have gone since the Hysterectomy? I’ve read it doesn’t stop endo and some people don’t get much relief. I have not had children yet but I was offered a “full clear out”!
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