Having full bowel removal in 2 weeks need advice

Posted , 6 users are following.

Hi all ,

Im due to have the whole of my large colon removed in 2 weeks through key hole surgery. What i want to ask someone whos been through this is what should I expect as in what happens to you? 

When you wake whats it like?

Whats the pain like?

Who helps with the stoma?

What/when can i eat?

How long before i can go home?

Managing the first few days/weeks at home

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10 Replies

  • Posted

    Hi jasonjason - I’m sure you’ll get other responses here too. My experience is that I had an Ileostomy 2 and a half years ago and the Rectal Stump subsequently 12 months ago because of chronic Ulcerative Colitis. The operation for both was 5 hours and is major surgery. I was very weak after the first operation but had been seriously ill prior to the surgery. It was very scary when they explained the things that could go wrong when signing the consent form but off the record the Surgeon explained that it’s highly unusual for this to happen. I am a 60 year old man and recovered quickly; I drove after 2 weeks, walked the dog for an hour after 3 and started working the garden after 4. You will experience some pain, that’s inevitable but the drugs help. The Stoma Bag takes a little bit of getting use to but with the help of your local Stoma Nurse it really is straightforward once you’ve built up your confidence. You can order supplies that are delivered to home. I eat anything I did before but it’s a little bit of trial and error. I went home after 4 days and had my lovely supportive wife to look after me. This is important.

    Having had surgery has given me my life back, stopped the need for some fairly nasty drugs and I now go to the toilet using a Stoma Bag which in some ways is more hygienic than by conventional means.

    Good Luck 

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    • Posted

      Hi mate. Thanks for taking the time to reply. Its so refreshing to hear you were back on your feet so soon. Im hoping il be the same im very out going and dont like to sit and dwell on things. Am i right in thinking its what you make of it? The only real concern i have is sepsis or something similar after surgery as ive been on steroids ect to try and control it for some time. If you could do anything differently from last time what would it be ? 
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    • Posted

      Hiya - it is important to make the best of it, for sure. In my case the UC was going toxic and the operation was an emergency. So the bottom line is that I wouldn’t be around to tell the tail. To be honest I also welcomed the release from some of the drugs I’d been taking especially Steroids and Infliximab both of which can have nasty side effects. I was also on a full dose of immune-suppressants before the operation. Throw in a variety of suppositories and enemas.........get the picture? There’s nothing I would have done differently, the Surgeon was incredible as was the aftercare and support from the Stoma Nurse Team. I’ve not heard of Sepsis being an issue but as I said in my first response the menu of potential complications with any major surgery are terrifying but highly unlikely. They are obliged to make this clear to you. I really upset me but I was in a fairly emotional state in any case. The possibility of impotence for men or an inability to have children for a woman because of damage to nerves etc inside the pelvis makes you stop and think but the chances of this are very slim.

      Returning to would I do anything different? Perhaps eat and drink less as I’ve put 2 stone on and am perhaps a touch heavy at 15 stone.

      Good luck, I’m sure you reflect on it as liberating in 12 months time.

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  • Posted

    Hi Jasonjason,

    May I just take the opportunity to wish you well with your forthcoming surgery? It's not something I have needed to experience first-hand, so I cannot offer any advice, but I hope you will derive much benefit as a result. A friend of mine had his large colon removed at St Thomas', London, some years ago and has not regretted it; his life has been restored to a very great extent. 

    With kindest regards and thoughts,

    Peter A 

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    • Posted

      Thanks alot for taking the time to reply peter. Im not one of those people who worry too much what will be will be. But thanks again for you lr support.
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  • Posted

    Hi jason i was really weak and in horrific pain after surgery was in hspspital 10 days but I was really ill prior to operation And I got cut open to remove colon I never got key hole as I had to get emergency surgery so not too sure with key hole if you will feel lot better than I did I even got my girlfriend to bring me up 30/500 codamol tablets so I could get sleep at night cause the pain would keep me up and the hospital only give out paracetamol and oral morphine which believe me both are weak and do nothing to manage the pain but as I said your key hole so have no idea if you’ll experience the sever weakened and pain I did and you get a stoma nurse mate he/she will help you and show you how to change stoma bag and clean the stoma you also get a wee hand book tells you food to avoid because some food will or could bloke the stoma but to be honest I’ve eaten everything it says to avoid and I’ve been totally fine just chew it really well you’ll honestly be fine tho mate your not alone I was gutted at first I was a healthy 29 year old going to the gym 5 days a week and eating really good to having this bag stuck to side off me and losing 4 stone but you bounce back all this only happened to me 2 and half months ago snd am back at work back at the gym and nearly put back on the 4 stone I hope it all works out for you. Mate 

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    • Posted

      Hi, have you considered a reversal? Glad you are responding well after the surgery. My son is 4 years post j pouch reversal and doing very well. He is active, eats anything and no pain or meds.

       

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  • Posted

    Hi jasonjason 

    Im 61 year old female & had op to remove bowel & Stoma Feb 17, then had rectal stump removed & now permanent Stoma 5 weeks ago, March 18. Info based upon My experience of having op in two stages. My first op was 6 hours. I had keyhole, 5 places abdomen  & an incision across bikini line. I was not in pain but you’ll not have any strength in your abdominal muscles. So they’ll show you how to roll onto your side & slowly sit up the next day. Then you’ll get out of bed into a chair where I had a wash. I had a caphiter for my bladder for 3 days which meant I couldn’t wear anything on lower half so had hospital gowns on as had bought pjs. You should wear hospital socks to prevent  blood clots ( provided by hospital & standard when immobile). Your Stoma bag will be checked &  emptied by nurses at bedside first few days. That was the only thing I found a little difficult as Initially the smell & sight can be offensive. Aneasethic, medications, gas etc all going through you. The nurses don’t bat an eyelid & just empty it for you into a cardboard bowl as they need to check how much fluid your passing & how much your drinking etc. You will be offered small amounts of food , soup ,jelly, ice cream first day or so. The physio team will also want you up on your feet walking. Next day Stoma nurse changed my bag while I sat at bedside. I was Not worried to greet my Stoma for the first time, it looked ok. Your Stoma Will get smaller over time & mine shrunk a lot even by week 2! Remember that when you’re home & constantly check the size when you’re cutting the hole to avoid leaks in the early days. Any doubts ring the Stoma nurse. Day after that my caphiter was removed & I went to the bathroom & had shower & then Stoma nurse helped me changed my Stoma bag. Over the weekend I had to changed the bag on my own & then on Monday when the nurse was back in she observed again that I could manage ok before I was discharge from hospital. So that was Tuesday- Monday stay. By the time I left hospital I was eating meals but small amounts. Just take it easy & chew everthing really well. Remember it’s leaving your body much sooner than it would have done if passing all the way through large bowel so you need to help food break down into smaller size & also you need to be a bit wary of some foods that don’t break down easily ie sweetcorn, mushrooms, coconut. You’ll soon get used to it. It took my ages to shower & change my bag in the early days up to an hour but now I can do it in 5-10 minutes & I Never thought I’d say that! Op number 2 was to remove rectal stump & sew up below. Slightly more sore & discomfort but after 3-4 weeks eased & now 5 weeks I’m forgetting about it. Any more questions please ask. Go into op with positive attitude. You are going to get well & get your life back! B x

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  • Posted

    *Block the Stoma not bloke! Lol , sorry it’s late at night! 
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