Losss of taste and appetite

[angie26]

my husband had his prostrate and bladder removed, 10 weeks ago now, he lost his taste and appetite, he is not eating or sleeping, he’s lost 6 1/2 stone! No one has any answers!! I have tried with food of all sorts and he just cannot get it down, he is just about managing a protein shake but that’s it, anyone been here?? He is also diabetic!

[sassy59]

I’m so sorry to hear of your poor husbands predicament but you really need help from the medical profession including a nutritionist. You are struggling to help him understandably. Can he eat any soup perhaps? Insist a doctor sees him and checks him over as he’s losing weight at an alarming rate.

Please let us know how things go. Wishing you both well. Xxxx

[angie26 in reply to sassy59]

yes I have taken him to gp, one sent him to local hospital, kept him for a week on IV antibiotics then sent him home until they could get him a date to do a procedure which would unblock his kidneys, he went back 2 days later and had dye through his stoma which showed no obstruction, sent home, obs all satisfactory although crp 40, I questioned this and was told it wasn’t a worry, taken him to another gp in the practice on Monday and he says he will write to the hospital as we have had no news about biopsies taken 10 weeks ago at time of operation, he also said that he would speak to dietitian! My husband was a very fit quite a large man who played golf 3 times or more a week and the other days he would be out walking for hours! He struggles to get up out of bed and losing so much weight anything he does just exhausts him, he was a 3XL in shirts, I am now buying large!!

[sassy59 in reply to angie26]

That’s dreadful and you must be pulling your hair out in frustration. Keep pushing until the doctors do something. We have to fight for everything these days. I’m carer for my husband and know what it’s like to fight his corner. Here for you. Xxxx

[angie26 in reply to sassy59]

Thank you xx

[Turnipgirl in reply to sassy59]

Too right we have to fight for every little thing these days!

When I was being evicted I sat for 3 hours on a phone line to fight to get the help I needed and also kicked and screamed at the council office and made a fuss as no way was I being marched out by the bailiffs when I had done nothing wrong!

Thankfully I left the day before the bailiffs were due to come in after I got offered the place I am at now and now feel that was the best thing that could have happened to me but it was a disgrace though having to have fought to have got what I needed!

[sassy59 in reply to Turnipgirl]

Everything has turned out well for you thank goodness. That’s good xxxx

[Turnipgirl in reply to sassy59]

Today we enjoyed a walk round the district and the rhymney trail which I hadn't done for years and it felt strange not going back down the hill to the old place and going in the opposite direction!

[Ern007]

Hi Angie26.

I take it your hubby had a Cystectomy? A rough operation. I was offered a Cystectomy for Bladder Cancer, they wanted to remove my Bladder.Prostate and Lymph Nodes. and fashion a stoma to wee from.

I said no unless all other options had been exhausted - was given BCG Treatment direct into bladder, It changed the grade of my cancer but, a tumour has come back and I have to have it removed shortly.

I understand Bladder and Prostate removal takes some time to get over, can take 3 months or more.

I would get in touch with the urology or oncology team that removed your husbands bladder and prostate and tell them the full effects of the effects of the operation.

I have not had that Cystectomy but was pressured to try and get me to have one, and it was all explained so I can see where you are coming from.

I think you need help, try your GP and he/she may referr your husband to urology or oncology if not contact them yourself.

I wish your hubby well and hope he has a full recovery soon. .

[angie26 in reply to Ern007]

Thank you for your input, my husband had brachytherapy some years ago, more recent 3 different sessions of chemo, radiotherapy, scraping of the bladder and latterly bcg, they talked about removal for some time and then said it was now time, it’s awful to see him, a shadow of his former self, we have been back and forward to doctors and hospital, he’s seen stoma nurses and urology rings every week, he tells them all how it is but very little feedback!

[Ern007 in reply to angie26]

I really hope he starts to eat,that's what will give him strength - That operation can take a while that's to be expected, but I hope his symptoms can be helped. Please let us know and hope he starts to be able to eat again.

[angie26 in reply to Ern007]

Thank you

[janedivney]

The poor man must be so weak, and obviously you’re worried sick. He won’t heal & recover without nutrition. That level of weight loss is ridiculous! It sounds as if he really ought to be in hospital. I don’t know how old you are but caring for such a sick person must be a terrible strain. My old boss had a similar procedure and a very slow & traumatic recovery - he ended up being fed via a PEG tube. That way he was getting nourishment but could eat very small amounts at his own pace, and slowly recover his strength (he’s fine now btw). I don’t know whether that’s a possibility for your husband. Obviously here we have no experience of bladder & prostate conditions - is there a more relevant HU site? Have you tried phoning the Macmillan helpline?

[Patk1 in reply to janedivney]

I agree with janedivney,contact macmillan nurses.he needs to be fed to have strength & to aid healing..their input may get him help he needs.all the best x

[battison]

you must be frantic with worry. My brother went through same op 3 years ago and lost huge amount of weight (diabetic levels went right down!) Major surgery has a massive traumatic effect. I’ve found this twice, first with cancer then with open thoracotomy. My surgeon advised those little live yoghurt drinks. Probiotics are good, it’s protein you gulp it down. Also those protein puddings you can get. I couldn’t face eating for months on end. Everything smelt wrong. I used an essential oils vapouriser both for calm & to rid hospital smell that lingered on and on. Recovery can be slow business. My brother slowly built back up as I hope your hubby will. Hang on in there! Wishing you both all strength rest & peace x

[battison in reply to battison]

If it’s of comfort my bro (76 and 3 years on) - having had initial scary stoma issues - after long haul of recovery - is now going on cruises & just bought a whizzy sports car! X

[Shirazmataz]

Hi Angie. Im sorry to hear about your husband loosing so much weight. There is a UK charity called Fifth Sense that supports people with taste and smell disorders. I belong to it as my taste and smell have been affected by covid a condition called parosmia. They are very supportive. You might find some help there. You will find them on line. All the best for his recovery, Sally.

[Fresco]

Dietics Team urgently and GP , sometimes quantity is the ussue

[Ergendl]

Yes, urgent referral to a dietitian and request PEG tube feeding. This needn't be permanent and can be reversed when eating is re-established.

[Nula2]

Hi Angie, sorry I can't offer any further advice from what's already been given but just wanted to say hope you get some proper medical help asap xxx

[Snackjack]

I also losr my taste and appetite when I was given Chemo for terminal cancer back Jan/Feb 2024, now in October and no improvement. I get Actagain 600 on prescription and buy Fortisip myself (total of both is 900 Calories) which has helped maintain my weight. perhaps worth discussing with your medical team or your GP. There are several flavours.

[Dottie11]

I have been drinking Fortisip due to recent weight loss. Check what the Gp can prescribe as some protein drinks are suitable for Diabetics and some not so good. Others on hear have posted great advice and have more knowledge than me. Take care this must be so difficult for you both. xx

[angie26]

I would like to thank everyone for their very kind help, I will let you know how he gets in with the various suggestions you have all made, thank you sincerely xx

[Alberta56]

Just to send very best wishes tp both of you. xxx

[Germantara]

Sorry to hear off you're husband having a bad time I hope he gets sorted and on the mend it will be very worrying for the both off you keep badgering the docters till you feel happier with treatment take care

[katieoxo60]

Angie 26, That is not right for your husband the weight loss is over the top and his appetite should be returning by now. GP should be able to give you a prescription for energy food drinks they can be bought in a chemist too but are expensive. All the replies make sense the only other thing that might be hindering recovery is past radiotherapy treatment side effects. liquid diet is the only slow way back . I feel so deeply for your dilemma if he is that weak your GP should be coming out or at least a community nurse if only to support you. How's he managing to walk or are you using a wheelchair? My thoughts are with you.

[Xrossstich in reply to katieoxo60]

My husband has eating problems as well, he’s on prescription 3 Fortisip drinks per day and now he’s been prescribed 3 Calogen extra shots. (High protein & energy) to try and increase his weight. He’s struggling to eat food now. Good luck.

[angie26 in reply to Xrossstich]

Is his eating problem due to an operation?

[Xrossstich in reply to angie26]

Hi Angie 26, my husband has pulmonary fibrosis, the almost constant coughing bringing up phelgm has ruined his taste buds, he’s also got dementia which doesn’t help. Also heart disease from heart attacks & a triple by pass 20 years ago plus another heart attack, plus the food isn’t going down the tube as soon as he starts to eat it comes back. We have a nurse coming out to see him this week prior to the Doctor coming out to assess him. He has no energy at all he’s 8-3lbs now. We see the lung specialist on the 10th I’m hoping for some answers. We’re 86 years old so have had a good life. Thank you Crassstitch

[angie26 in reply to Xrossstich]

Oh I’m sorry to hear that you must be really sad ! My husband was playing golf the day before they removed his prostrate and bladder, 10 weeks ago, we have those drinks too it’s the only thing he can get down, all the best xx