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Hello lovely people
Just wondered if anyone has any tips or advice for me in regards to Charlies illeostomy tomorrow? Just wondered if there is anything i can get or do to make him more comfortable? Good food choices when he gets home from hospital?
@Kareno62 thanks for this, i will look into the aloe bags!!
Yes i do not know why the hospital said 3x, it seems so unrealistic, so basically he has been only drinking isotonic drinks, as he felt like he was emptying it too much!! I`ve told him to go back to normal now, and we can keep the drinks if he needs them
Hi @charleyb @sweetcheeks
As @Kareno62 would tell you, it is easier for a female...no planning ahead, you just empty when doing a wee, no problem at all.
The main thing is to drink more, as you have realised, to stop that giddy light headed feeling. The output should be like porridge apparently, but don't get too worried.
Hi @charleyb I'm so late to this thread so I'm sorry. But just wanted to say I'm so glad you're husband is beginning to get to grips with his Ileostomy. I had mine done at the end of March so it's just beginning to feel a little more routine like. I agree with all the fantastic advice. I tend to find my stoma area a bit itchy in the afternoons sometimes... or the skin around it. That's because I'm just a little out on getting the bag right round the edges of the stoma and because my output is a little more loose. But it tends to pass. I find porridge a really good start to the day with some banana. Really thickens my output up. For lunch pasta with some protein and veg seems to work and then in the evening I try to have some good fish/chicken with rice or mash and a little veg. Small helpings as I can't manage much still. Some veg like asparagus and tomatoes goes straight through me and as the others say tea can do too as well as fizzy drinks.
It's probably so annoying to hear but we are all so different so what works for someone might not work for someone else but I hope this helps. I definitely empty my stoma more than 3 times a day. Maybe 6. If I'm feeling naughty and am at home then I might have an extra cuppa that goes like liquid through me but I just take loperamide and wait half an hour before anything else. Has he been prescribed those ? Really helps. I also drink lots of lucazade sport to reclaim lost electrolytes if output is high. As others have said we are prone to dehydration if not careful.
I lost a load of weight too as couldn't start eating for ages and then stomach rejected food so had to start all over again with NG tube and everything 👎 I had a third of my stomach taken away too. But 18 weeks on or so I've put on 2.5 kilos. So it will happen. He can enjoy lots of little treats too. I saw the dietitian last week and she said the most important thing is to try and add protein to meals if possible as it will help in recovery and help build muscle. Also to keep on trying things and keep a diary to see what works.
Oh and although those build up drinks are good too. I hated them but after i began to feel a wee bit better they were a good way of adding calories and minerals. Also really good advice way back was when someone said, take things slowly if lacking any energy. He's been through so much, oh and one more thing, my stoma farts all the time especially at night!!! Sorry I've gone on and on but hope some of this helps
@HopsiFAP this is amazing thankyou!!
Finally we have a decent consistency and so far touch wood he has felt really good the last two days. Definitely eggs are a no go. But he tried a roast dinner last night and was ok, even if the veg was a measly portion of soggy carrots!!
Hopefully if we keep going like his he will gain weight in no time. He starts chemo tomo so i that may affect it, but we shall see
Hi @charleyb that's great to hear. Yes the dietitian said they can constipate you but I think they go through me too?!! Great news on the roast even a small dose of carrots is fab!
I hope his chemo goes well. I had mine front up so can't unfortunately say how it was through that but I actually had quite a healthy appetite on chemo because the steroids can give you the munchies so hopefully he won't lose any more weight. Did I see he was operated on at the Marsden by the way? I had my op there and they were amazing
@HopsiFAP no he was operated on in Bedford, but we have asked to be refererd to the Marsden. We are trying to contact a consultant there, as second opinion letter has been sent but heard nothing.
I really wanted the tumours out first, but due to rectal tumour about to block, and its size, and also the lung met we need to do chemo and radio first.
Yes i have heard that about the steriods!!! He is used to being such a big bulky man, always in the gym, and he has lost all that from the Ileostomy op, hopefully like you say he will gain it back quick
Hi @charleyb ok yes that makes sense. I had to have treatment first up too actually. i hope you hear back from them soon. If you need a consultant's name I am under Mr Rasheed who works on the team with Prof Tekkis. He's an amazingly kind man and brilliant surgeon.
Oh bless him! I was an exercise junkie too so miss that but I did exercise every couple of weeks with a PT on chemo so I hope after a while he can get back into his gym work too
Wow i have just read your bio @HopsiFAP you have been thru it!!! Thanks for the consultants name, we have been referred to Dr Chau for a second opinion. Whilst our local hospital have been great, i want hubby to go to a cancer specialist, esp as it is slightly diff in that the primary is big and the lung met is large, but both are isolated and contained and no lymphs involved. His Onc hasn`t seen this, and rather than be all positive she keeps trying to find reasons why it is so different but all her ideas are unfounded,i.e she said most likely para aortic involvement, and sent us into a spin that he may be palliative, but actually the PET was clear! I just would rather hear facts, and i don`t feel safe with her. I want an Onc that i feel i trust!!
I`ll tell him you had a PT he will love to hear that!!! How did you find chemo? he wants to go back to work and gym and i keep saying see how it goes!!
@charleyb Yes actually I've heard of him. Initially the Marsden recommended more chemo for me after surgery as a kind of belts and braces approach but both he and my oncologist agreed that it wasn't necessary in my case. He looks to be amazing reading by his bio too. I can totally understand your frustrations with your local oncologist and agree whole heartedly that you need to be able to trust the person who is in charge of your husband's care.
That's such good news the PET scan was clear and that there are no nodes involved either.
Oh gosh yes it's been a proper rollercoaster over the past year and a half but I've been so lucky in that they were able to operate and remove the tumour and have no nodes involved. Massive life change as I have two bags now...they had to take my bladder too. But I'm getting there. Unfortunately I have to have a whipple's op and liver resection next month, this bloody FAP business.. I've got pre cancerous polyps in my duodenum and an Adenoma which is benign but growing in my liver so that's coming out too! But i feel like one of the lucky ones really.
I actually found chemo ok. What is having chemo on? His lung or bowel or does it work on both? The reason I ask is the side effects are a little different for each drug. On folfiri I felt a little more nauseous but they csn up your anti sickness whereas on Folfox I suffered a wee bit with peripheral neuropathy but again keep,mentioning that and they can adjust dosage if bad. Exercise once a fortnight when I began feel a little less tired was so good. Even if I couldn't do that much, mentally it really helped to get out there and do it. I've heard from many people,that exercise improves how people,deal with the side effects of chemo so yes I think he will really benefit. However I do agree. It will take it out of him, so he should maybe see how the first few cycles go. I was lucky because I went into chemo relatively well whereas he has already had surgery so I think being sensible and finding his own routine first will help.
Hope this helps
@HopsiFAP hes is having 6 cycles Folfox and 5fu, hopefully to target both sites. He then has radio and chemo tablets for 5 weeks. This is again why i want him to go the Marsden, i wonder if they would agree with this. Our Onc was happy to refer us, i was a bit worried how to go about it. But now i think, so what, i need the best care for Charlie, so if it means stepping on toes then so be it! His prognosis is good, yes it is all large, but being so contained and islolated means he stands a really good chance!
Charlie has found that he has got used to the bag quite quick really. In all honesty from how he was before, it is a million times better!
Did you have your chemo at the marsden too? have you always been under their care?
Yes he wants to get strong. The ileostomy really zapped him! And obviously in all that you have to deal with the fact you have cancer, its such a massive diagnosis, mentally and physically it has drained him. But he feels in a good place now. Glad to be actually starting treatment and better after the op!
@charleyb I'm so pleased Charlie has adjusted so well to his bag. Good for him! Yep totally agree, I think you just do you have to do and if that means stepping on a few people's toes then so be it. I'm so glad that the prognosis is positive for him too. Sounds like you've got a good handle on things and that really helps because as you say, it really takes it out of you mentally and physically. Brilliant he has you for support too although it must be tough for you too.
No I was referred to the Marsden from my local hospital as although the tumour wasn't huge it was in a really challenging place to remove so I was lucky that they felt they could operate. All my treatment was done at Charing x hospital. I've my next op at the Marsden.
When does he start chemo? Let me know how he goes but yes exercise and feeling strong can only help,
@HopsiFAP chemo starts today! So i will let you know
@charleyb , good luck today
@charleyb Good luck
@charleyb how did the chemo go?
@HopsiFAP it went really well (should i say that out loud, will it jinx next cycle eeeeek!!)
The centre was lovely, very serene and calm. All the nurses were great. So far no real side effects but then they have given him so many drugs to combat those! Hes had a small amount of the wierd cold sensation, and some fatigue but that is it. Slept well, and looks great today. We`ve just been for a little walk after i got back from work, and before the little people get home, and he managed fine!!
How are you?
@charleyb I'm so pleased. Those nurses are just so lovely aren't they? I'm good thanks. I'm away for a week or so from tomorrow for a wee break so I'm really looking forward to it. Next op on 11th Sept so nice to get away before that
Thats sounds lovely @HopsiFAP where are you off to? I think we may go away between chemo and radio, or perhaps half way thru chemo depending how Charlie feels
@charleyb just off north to see my Dad and then over to Northern Ireland with friends for the week. Since first long break since all this began so it will be so lovely and such a boost. That's a good idea to get away at some stage. Definitely recommend it. I'll prob be off line for 10 days or so but catch up when I'm back. Lots of love to you both
Thankyou @HopsiFAP oh and forgot to say we have an appointment at The Marsden next week.........fingers crossed crossed he will take charlie as his patient