Husband uti

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Hi. My husband had a radical cystectomy 5 weeks ago. So far, we've coped fine, but there's two things that are worrying. He lost quite a bit of weight after the operation and he's finding it hard to gain some back. He eats 3 meals per day and snacks between them. But the weight hardly goes on. I talked to his doctor and she told me that the calories are being used up by the healing process. Has anyone come up against weight loss? 

The second thing is trying to cope with his fear. He's on anti depressants since the operation, but he's impatient and wants to be able to do more than he can. When he pushes himself, it tires him out and, after he sleeps, he becomes withdrawn. I try to keep his spirits up, but sometimes I have to walk away. This leaves me feeling guilty. He's going through an awful time and I feel for him. Also, we haven't seen our daughter or grandson for 10 days because they've had covid. We're isolated and trying to get through this. Has anyone any ideas how we can cope better? Most days are okay, but there's always the day when we both need our own space. 

This disease has turned our lives upside down. I think we're getting there, but any suggestions are welcome. Thank you.

  • Hi there, this all sounds familiar. At 5 weeks, it is still very early in recovery, which can seem frustratingly slow. All depends what you usually do, and expect to be doing. Took me 3 months before a phased return to work, 6 months before full normal diary, but 8 months before end of the day fatigue lifted.

    We all lose weight from the op & if he is able to eat plenty, that is good. Concentrate on protein (for healing) & carbs (for energy), ditch the usual healthy eating diet & go for cream, full fat desserts etc. Took me more than 3 months before I started regaining weight, I continued snacking until weight increased to a reasonable level.

    Depression is common post op, so good if that is being addressed. There's no requirement to be bright & jolly all the time. He's probably at a stage where he is starting to feel able to do a bit, but frustrated at not being able to do more. As he has found, if you do too much, you pay for it afterwards. I used to keep a diary of each small achievement of tasks resumed/tackled, so I could look back & see how far I'd come. Perhaps plan one activity for each day - try to space things out, with plenty of rest in between. Continuing to build up walking will help. You always need time & space to yourselves & it is hard for the 'carer'. After I was a lot better, Mr T remarked that I was a bit 'snappy' sometimes - I thought I'd been very self controlled ( eg when he shrank my favourite linen trousers). 

    Does your husband have any interests or hobbies that he usually does that can be tailored to short bursts? Even when family/friends can visit, he may find it tiring to have people around for long periods. I wanted lots of peace & quiet, did a lot of reading/watching TV/DVDs. 

    Have patience, things will improve. Hopefully when there is better weather, getting outdoors will help. Best wishes.

  • I filled in the progress chart that came with the stoma info.On bad days I kept saying it will get better and it did but the first couple of months were hard.On the positive side I feel it does strengthen you mentally to go through a tough surgery.Jane 

  • Lbel. You may find a high grade protein drink may boost recovery. I have used the attached. There is evidence out there that supports these supplements in your use case. However always best to check with specialist nurse, Dr or dietician. It worked for me.

    Leo

  • Oh yes, I had some complan in the cupboard & added spoonfuls to cups of weak gravy as a pleasant, nourishing drink, or to boost yogurt, custard etc. Sometimes liquids/soft foods are easier to eat in quantity compared with 'normal' meals. I actually found it an effort to use knife & fork, so preferred stuff that could be eaten with just fork or spoon. 

  • I’ve used Complan and Build up in the past.I was down to 6 stone 10 after gastric problems and I was 5’ 7 then,have lost some height now through arthritis.It took a while to regain weight after the cystectomy.