Weight

Laulau1

Hi guys

I hope you are all doing okay. I wondered if anyone has advice to get weight back up in a healthy way using healthy foods?

chelle_16

Hi Laulau1

I can only respond based on experience which is that if you have had a significant amount of weight loss then from what I am aware of it would be reccommended to consume healthy high calorie foods but you can do this in a balanced way. I know post treatment the reccomendation is to get your weight back to what is ideal for you then worry about perfecting a healthy diet you want.

However i am not saying eat rubbish. There are plenty of dense high calorie meals that can be balanced and healthy.

When i got diagnosed I had already lost nearly half my body weight and dropped from 83kg to 55kg. After trannsplant I weighed 48kg and didn't eat for several months but with dietician support I got back to 60kg by which time i had a better appetite.

I think seeking advice from your team and dietician is the best step. You don't have to be significantly deprived of nutrients to seek advice or support from a dietician. They help many post SCT to help gain weight in a healthy way and re-establish eating routine/life style.

I had dietician support in the early days of diagnosis too and they suggested high fat foods too. I spent several months being encouraged to eat bacon, eggs and sausages. I am unsure of the full reason I think they see it as bulky food.

I had body image issues throughout and still do due to how I was looking and often got trapped in this idea that i wasn't eating healthy and tried going on salads and fruit only then i discovered i had no energy. So there is good reason for maintaining a good balance with fat, protein, carbohydrates. Of which can all be consumed in a healthy manner and provide you with the energy your body needs.

I am now 2 years post and have only just started to find a eating lifestyle that is both healthy but not damaging to my energy levels.

Dieiticians can work with you in developing a perosnal plan to help you to gain weight in a healthy way. I hope this helps.

Best,

Michelle

Laulau1

Thanks Michelle that's really helpful I will contact the dietician.

chelle_16

Glad that is helpful.
Let us know how you get on.

Meerkat

Hello
I would agree with what has already been said, though think different dieticians have different thresholds, depending on their clinical backgrounds. I too lost substantial weight during my acute illness and treatment. I remember the dietician at my transplant centre being relatively quite relaxed when I commented that I could only manage a quarter of a biscuit, reassuring me that that was ok, and that it wouldn’t be too long before I could manage half a biscuit! She was quite right! But I was admitted to my local hospital four months later following a fall, and the dietician there was much more anxious about my low weight. They really pushed me hard with supplements which I struggled to tolerate. I guess what I’m trying to say is that the the dietician on the trauma ward was less familiar with the significant weight losses and challenges seen in transplant patients. (By the way my weight is sadly now back to pre-illness days).

chelle_16

Hi Meerkat

Thankyou for your post. This is very insightful and helpful.

On reflection I remember when I was between diagnosis' Non Hodgkin Lymphoma and Histiocytosis. The dietician on the liver ward (which is where i was taken due to liver faliure) didn't come to see me, just pushed hard on the suppliment drink which are high calorie and full of all the nutrients. (They where not horrendous baha)

Then moved to Haemotology once my diagnosis' where confirmed and the dietician there was wanting to do a NG tube. But I was avoiding it and thats when I was educated about the food I needed to help with muscle mass and healthy weight gain.

The dietician at my transplant hospital was very different and as you have mentioned Meerkat, they where relaxed and reasuring about things picking up on their own.

It took a little while to gain weight but when I did it came on gradulally as I got back to a balanced diet with their support.

Best,
Michelle

AH67

Hi Laulau1,

I hope you’re winning and starting to put some weight back on.

I’m not a patient, and definitely not a health professional, but have watched my partner go through the cycle of dramatic weight loss (and slower return to normal) a couple of times. I think it is really admirable to want to gain weight in a healthy manner. But I think that there is also a balance to be struck between gaining weight in a healthy way, and just gaining weight. If you don’t feel like eating, or are eating well below your calorific needs then it seems to me that any calories are good calories.

For my partner he lost about a third of his weight a couple of times during stays in hospital. The hospital food was not great (and he refused a feeding tube), but he also came back from intensive care not wanting to eat - the physical action of chewing made him sick. Despite trying the mashed up foods etc. his diet consisted mainly of Meritine (?) shakes made with full fat milk, and the fortisips. Gradually he managed to eat cheap iced sponges - easy to eat ‘treat’ food normally denied (but these are, a success of Government and the food industry, surprisingly low in calories). I would go to the supermarkets searching out the highest calorie value food so that the smallest amount of eating was necessary. Being well, I just wanted him to eat chunks of cheese, nuts, anything that was very high in calories, but for him all of it was impossible. In the end we alighted on traditional fudge - about 500 calories per 100g with minimal chewing. A terrible diet, but it provided the necessary nutrients through the supplements and sufficient intake of calories, to just get to the next stage.

As chelle_16 says, once you get out of not eating and put a little bit of weight back on, it then becomes easier as you are healthier and are keener on eating. My partner said that stopping eating became relatively easy, once you stop, the hunger and craving don’t seem to kick in, you need to re-educate your body to want food (and later for you to enjoy it). Before then it’s then a matter of just getting energy on board, even if unpleasant or not what you’d normally want to eat, but it’s the one part of your recovery that you really own.

Good luck,

AH67

Laulau1

Thank you yes my mouth has improved a lot and on steroids and nystatin so definitely hungry and yes with fortisip mixed with banana and 3 meals a day I'm steadily putting on weight. I hope both you and your partner are doing well

Dieseldrinker62

Hi Laulau.

I had difficulty putting weight on after my transplant and had a very poor appetite at first so was struggling to eat. What kicked it off for me was being put on steroids for my GvHD about 3 months after my transplant. They made me feel hungry at last and I was able to start eating.

I had very little interaction with a dietitian apart from whilst I was in hospital, where they gave assistance shortly after my transplant to prescribe nutritional shakes and soups to help me try and maintain some weight. I was 'threatened' with an NG tube by my consultant a couple of times to try and encourage me to eat but thankfully never had to have one.

I didn't stick to a particular type of diet to deliberately gain weight, but in my case I ate more or less anything and everything. I did a lot of snacking, and midget gems and pork scratchings became favourites! My sense of taste hadn't fully returned from my chemo which wasn't particularly helpful.

It still took a long time to get anywhere near my original weight though but being able to eat properly helped restore my energy and get some fitness back. Like Meercat my weight is back to my pre-illness days (and quite a bit over) so I'm currently trying to diet again to get back to something a bit healthier. Lockdown isn't making that easy but the weight is coming down slowly now that Christmas is out of the way too.

Hopefully the steroids will help your appetite and your mouth being sore won't have helped, so now that it is feeling better you will hopefully be able to eat better. Just take it steady and let the weight come back slowly, which it will. Balance that with some exercise too and keep yourself fit if your energy levels allow.

All the best,

Steve

Laulau1

Thanks Steve can I ask how long you were on steroids for? I've been high dose slowly reduced on them 3 weekish. I've had some disturbing side effects which my nurse told me was the steroids so hoping to finish this week on 5mg every other day.

My consultant happy for me to do this but is bit worried the fungal mouth infection/gvhd may get worse again.

She suggested taking steroid mouthwash 4 times a day with fluconazole once a day if I finish them this week.

She also suggested about immunosuuppressant myclofenulate which I've had before. To be honest I felt so much better when I finished this.

I know it's a case of balance the steroids are causing me a lot of anxiety. I'm also scared of long term effects of taking steroids.

Thanks

chelle_16

Hi Laulau1

I can't answer for Steve ? however i can empathise with your situation regarding the steroids and side effects combined with wanting to come off gradually but being concerned for any flares of GVHD.

I was on Dexamthesine prior to SCT at 60mg a day. Which gave me an insatiable appetite. Like Steve mentioned I ate everything in sight which was helpful to gain weight but it did lead to issues with self image. Which was a challenge throughout whilst on Steroids. The 'moon' face was a big issue for me.

I didn't have steroids post SCT orally just in creames for skin GVHD.

When I was on Dexamethasine and Prednisolone It triggered complex mental health challenges.

I wonder LauLau1 how did you find mycophenlate? You mentioned you felt better after you finished it. I struggled immensly with mental health issues which I am sure was a bad combination of high dose steroids (60mg a day) with Mycophentale and Cyclosporine.

I find that low dose steroids keeps things under control without disturbing side effects. It is a great drug to control a health crisis but i found that long term they where damaging in alot of other ways.

It is a balance between resolving a health crisis and mental health or lasting effects. Maybe explore the options with your nurse a little more and be honest about how you are feeling regarding long term steroids. Discussing how you feel is important.

I hope you find a helpful way forward.

Best,

Michelle

Laulau1

Hi Michelle

I'm really sorry to hear you have had long term effects from the steroids.

I just remember experiencing lot of fatigue and low energy the first 3 months with that. I was in intensive care for a week so they could of been part of it. My consultant started tapering me off them so I finished at about 3 months. After my energy levels picked up.

I hope your doing okay

chelle_16

Hi Laulau1

I am well now thankyou . I use my experience to support others now.

Yes! I relate to the fatigue. Glad you picked up after. Maybe the side effects of Mycophenlate out way those of steroids.(i am no expert)

Let us know how you get on and what you decide regarding your reduction of steroid and how your symptoms are.

Best,

Michelle

Dieseldrinker62

Hi Laulau,

To be honest I can't remember how long I was on the steroids, but like you I was on the highest dose of Prednisolone they could give to start with, which I think was 30mg twice a day. From memory they did try to wean me off them quite quickly, but this was tempered with monitoring my GvHD to make sure that it didn't flare up again so they weren't able to get me off them very quickly. Once they managed to get the dose down I do remember being on a low dose (5mg) for quite a while and this was maintained until I started ECP treatment for the GvHD. For the same reason it was also a slow process getting off Cyclosporin.

The only effects I had with the Prednisolone at the time was a raging appetite and struggling to sleep at night, but as far as I can tell there have been no lasting side effects from them.

Steve

Laulau1

Thanks Steve

I have those side effects