Had my cystectomy on 17th August and was told it would take time. I feel so overwhelmed by tiredness. It's such an effort just getting dressed. I do hope my energy levels improve soong
Hi jenlids,It does get better.That seems hard to believe in the early days post surgery.If you need to sleep/rest then it’s important to do so.I found the first few weeks were the worst for fatigue but gradually the energy levels start picking up and you can do more.It is frustrating but you just have to go with it.How are you feeling apart from the fatigue ? Love Jane x
Thanks Jane. I'm OK other than fatigue. Stitches now out. Was a bit put out because had to go back twice as first nurse missed some. My breathing is a real problem too. I have copd so am constantly having to use my inhalers. Loose bowels still. Doc said to take immodium Melts to help. Cut my first bag yesterday which was a bit nerve racking. Love to you. Jenny
Hi Jenny,I had the same problem with stitches.I hope the Immodium helps.I had the opposite with dreadful constipation.The bowels should settle with time too.My surgeon said they dislike being handled so tend to play up.You will get more confident with the stoma.I was all fingers and thumbs at the beginning but that went quickly.You get into your own pattern regarding stoma care.Just remember to measure the stoma until it shrinks down and you should be fine.It will settle to its eventual size.I used the paper template in the stoma supplies to measure and cut the bags to fit.Once the stoma has adjusted you can get pre cut bags if you prefer.Take care love Jane xx
It's 10 weeks today I had my cystectomy. Although everyone was saying about being tired I certainly hadn't realised quite how tired I would feel. As Jane says though it does get better and I feel much less tired now and have done for weeks.
Everyone seems to underestimate the level of fatigue. Remember how much healing your body is doing inside. Make sure to eat little & often, concentrating on protein & carbs. Drink plenty & rest frequently. Definitely a marathon rather than a sprint. but you will gradually improve. Just pace yourself & avoid overdoing things. Soon you will be able to look back & see how much more you can do than immediately post op. Best wishes for a smooth recovery.
Jenlids, 10 weeks is very early! I was told 1 month recovery for every hour of the operation. At 10 weeks, I was still nearly fainting all the time & had to lean against walls.
About stoma cutting, my stoma nurse in hospital cut my first bag with me & she also made the template. In fact my stoma remains the same size & this gets checked every few months in my regular stoma nurse visits. I now cut 5 bags at once, so I always have a spare cut bag in case my stoma dribbles as I put on the bag. I also carry a few cut bags in my emergency pouch in the car.
I remember reading posts on here about how fatigued people were and couldn't imagine it until I went through it. I was tired after just going to the kitchen to get a glass of water. Couldn't believe it.
Just roll with it, it's major surgery. Don't knock yourself and just let your body heal
