Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi everyone hope everyone is keeping as well as they can, so i havent been on here a while went in th 3rd feb for my transplant, my transplant went well and my blood results have been coming back well, however i only got out of hospital on the 3rd april as caught a bad mouth virus and had ulcers, coldsores all over my lips, tongue, mouth and throat, i spent 4 weeks having to hav drips and tpn as swallowing was impossible i now cant take acyclovir anymore as my body doesnt react to it, i also had the CMV virus but that has cleared for now.
Anyway im just asking for advice, the first week i was out of hospital i felt quite well and fine, however this week i cant stop being sick and feeling sick, ive got ondansetron, cyclizine and some tablet ive forgot the name that i can take a quarter of at night none of these seem to work, is there any other tablets anyone has found work that i cud ask my dr for, also any suggestuons on what to eat that will stay down had to hav a 6hr drip yday becos of dehydration but then i eat and drink and im sick feel like im caught in a bad circle at the moment and im trying to do my best to not end up in hospital this week at least.
Its good to hear from you, although I’m really sorry to read what you have been through, you have been through so much.
Sorry, I have limited experience with sickness (my problem was the other end) but I do have experience of TPN, and what I will say is it took my body a good 6 months to fully get back to eating normally again. It is almost like your digestive system needs to learn how to do things properly again. I found one new food a day and sticking to bland foods was the way forward. There were lots of ups and downs and I was re-admitted on the path to recovery so don’t feel down if that happens to you too. Also, for me, there was a large psychological angle to it. I followed things like mindless eating (ie, eating while being distracted - ie, in front of the TV, whilst being busy doing something else - basically anything to make eating not a “thing”). Then, for me, longer term distraction was helpful so I didn’t think about whether my digestive system was going to work - so is there anything you could do immediately after eating to distract yourself - even for an hour or two as that will help you absorb at least some nutrients.
I really hope this helps in some small way Steph. Like I say, I had limited problem with sickness but hopefully someone will be along soon who may be able to offer more help on the medication side of things.
I’m really hoping that things sort themselves out for you soon Steph,
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Hi again Steph, well done getting through this and for some the hospital stay does get longer due to complications - but you are out and in your own bed.
Oh I feel for you, following my second SCT I was in that cycle of feeling sick or being sick. We tried every anti sickness drug but nothing could overcome this.
My Macmillan Nurse (who was great) said that I was most likely fighting a mental cycle about thinking I would be sick and in reality was not actually sick, but don’t get me wrong I was sick at times, but often it was as though I was reaching so much that I made myself sick........a very hard time.
At times I just needed to look at food and I would be sick or feel like being sick. The worst was looking at all the meds at the end of the day and again, even before they were in my mouth I was being sick........ this went on for a few months :(
As I was not eating well in the first days out of the unit my stomach had become reactive and would fight back when food was introduced. But I did persevere with (very) little and often goes at having soft food.
The main things I lived on was small cups of good home made liquidised soups with a touch of cream....... then moved on to include mashed potato with a little cream mixed in and scrambled eggs....... this took weeks to develop then one morning I woke up and asked for a bacon roll !!!!!!!!!! and that was basically that.
I do hope you can get break this cycle quickly as it it very tiring and holds back your recovery.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
sickness really is a bind, the replies you’ve had so far will hopefully help a bit? Even if only to say you’re not alone?
do think about ginger too in any form as it does help a lot with nausea.
Little and often is usually the key
my daughter had her SCT in October and was the same, she had very bad mucositis and she had nausea for a good 8 weeks afterward- don’t want to worry you but she was told it’s pretty normal- she had a few stays in hospital for rehydration but they said it was a mucositis in her gut so she was eating little and often, bland foods, milkshakes and the bottles of stuff from the dieticians. Then she got to about 8 weeks and it just disappeared! And just got better so although you’re in a cycle, it does get better very quickly
Hope this helps
So sorry Steph that you have had so many problems. I lost more weight after I came home than I did in hospital because I ate so little. I only wanted small amounts of food on my plate - seeing a lot of something put me off.
I agree with highlander about the bland food, but cream makes me worse. Peppermint tea is the most soothing thing I have found, even the smell starts to calm me down. Because we do start to get so anxious about the whole eating thing.
Even now at nearly two years post transplant I get caught out. I don't like noise or stress when I'm eating, and prefer not to have someone talking to me unless it is very calmly.
Thank you for th replys, been in hospital all morning, spent the whole day being sick yesterday, through the night so been on some fluid this morning and IV sickness which is the only thing that seems to work if only i could take that home, anyway plan is to go hone this afternoon and try some liquid anti sickness instead of the tablets.
I know exactly what you mean i just look at all my tablets in the moring and at night and the thought of swallowing them does make me feel sick so maybe some of this is in my mind too.
I also know i try to do to much having 3 kids under 11 i feel like im letting them down i was in hospital 9 weeks 3 and a half of that in isolation so i cudnt see them at all and now im finally out im so sick i cant manage to do anything with them and its been the holidays so relying on my mam a lot which she doesnt mind at all, the dr has told me to try rest and stop trying to push myself to keep doing stuff im not upto i just need to learn that myself.
Reading the replys on here has helped so much realising your not alone and it is still normal to be feeling this sick and also tips on what to eat and thank you very much for taking the time to reply.
Hope everyone is keeping well.
really hope this spell is going to help you to turn a corner, please never worry about needing to get back to hospital, they really are the experts and will, like now, help sort things out. Hopefully they will have a magic ‘potion’ that you can go home with.
facing the meds (especially the horse-pill- ciclosporin) is a mountain and will take concentration and mental effort. Try not to group that into a ‘food-type’ picture, separate meds and food totally even if they need to be tied into full/empty stomach.
Sending gentle hugs xxx
Katy struggled with her tablets as well so she took them throughout the day and the doctors told her which ones were absolutely essential and if there were any that could be omitted if there was a day she felt particularly sick, and she also found that iv sickness was sometimes the only thing that worked- do you take the ant sickness tablet regular? Or just when you have feel sick- as I’m a nurse I said to Katy to try taking the anti sickness regularly for a few weeks to try to prevent rather than wait until she actually feels sick and that seemed to work, but it does ease off - I bought Katy some queasy drops on the internet and she liked them as well to suck .
Just wanted to add to try not to worry about your kids too. I had 3 under 11 and was in for a similar amount of time, so sometimes I felt guilty for not doing more with them when I was back home. But try not to worry and rely on the support you have around you. They’ll be so happy just to have you around, and you’ll soon be back being the Mum you want to be - it just might take some time, but keep plugging away, you’ll get there.
All the best
That all sounds very familiar. So sorry you are going through this.
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