weight loss

[Anniw]

Hello everyone

I am having weight loss and having had this last bout of flu my weight which was a bit steady has decreased. The respiratory specialist is concerned and hence I am not sure what to do. I think I am eating ok I started including back some milky products as I had eliminated all and used mostly vegan foods. I am thinking of having vitamin booster infusion to help my body with absorbing nutrients from foods but if anyone has anything that can help I would appreciate it. This one has me in a bit of a low mood.

[Castella]

Vegan is not always right for SSc people who may not be able to tolerate much fibre. Why not ask to see a dietitian ?

[Anniw in reply to Castella]

Thanks for your reply. My Gap sent a referral to the dietician I am yet to get a call or letter from them. The last time they had rejected the referral so am hoping this time they don’t.

[OldTed60]

I was consistently losing weight and, prior to surgery for stoma in June, my gastro and dietician wanted me on TPN to build me up. But I’m so immune-suppressed that I know I’m high risk for infections leading to sepsis from IV feeds. So I made a big effort to gain some weight. I managed to gain a kilo by eating chocolate (vegan) and drinking hot drinks with prescribed ENSURE plus added - I can only bear the coffee and vanilla flavours.

I also nibble rice cakes, vegan cheese slices with tahini or 100% pure peanut butter and marmite mixed up to help soften the rice cakes. So, although I’m not vegan, it’s possible to build up on vegan foods such as mashed avocado, vegan cheese and smooth nut butters. I’m on a low fibre diet as I have gastroparesis and SIBO and now, a stoma so the one child portion meal I eat daily contains a protein such as fish, chicken or lean mince or egg. Since surgery end of June I’ve put on another kilo thanks to not needing so much laxative or colonic irrigation - so I’m now nearly nine stone! I don’t want to gain or lose anymore, just stay at 56kg would be ideal. However sometimes we need to give our gut a rest and IV feeds or a nutritional supplement liquid diet become necessary. A good dietician should be able to help.

[Anniw in reply to OldTed60]

Thanks for this details explanation. I have been thinking that my gut needs a bit of healing and planning to ask for IV feed for the medication and I do have some supplement packets that the GP gave me that I am going to try and drink twice per day to see if that helps. My stomach feels sore but I am due to see the gastro this week so hopefully she can give me some suggestions. I had the chest infections so am on an extended course of antibiotics too. Hopefully everything will settle out shortly. I wish to be 70 kg ideally and I am off by 11 kg. Hoping for better results. I will drink hot chocolate and horlicks as I do have those at home.

[OldTed60 in reply to Anniw]

70kg - are you tall/ large frame I wonder? I’m only little 5’2” so 56 kg is fine for me. I used to be 86 kg before scleroderma gut wiped the floor with me during the pandemic. I’m glad that so far my lungs and heart are clear but no drugs work for scleroderma gut. Hope the gastro you see is more useful than mine! 🤞🏻X

[Anniw in reply to OldTed60]

I am 5’7” tall. Oh no I hope mine is good because I do not like how I look now and it is stressing when you are loosing weight because of the meds. I am hoping she will give me some relief or at least a plan than will work.

[OldTed60 in reply to Anniw]

I think it’s the rarity of Systemic Sclerosis that often means they wash their hands of us. Hopefully yours will know more about it than mine. Best of luck X

[Clangerscat]

Hi Anniw, it’s that time of year when your mood gets a bit low and you don’t need anything else to add to it! When I was struggling with weight loss some years ago my GP prescribed me some food supplement drinks which helped. They were not the most pleasant tasting drinks but not too bad if they were well chilled. Might be worth you asking your doctor if you have some. Hope you feel better soon.

[Anniw in reply to Clangerscat]

Thanks! I got some and you are right they do have a bit of a taste but I mix mine with almond milk and try to add some fruit to make it like a smoothie. Thanks I will use them up. How many times per day did you drink them?

[Clangerscat]

long time ago so not sure, think twice a day.

[Anniw in reply to Clangerscat]

Ok got you. I do twice per day as well.

[Halfwayuphill]

Hi Anniw

I’m not much of a good example as I’ve struggled with this problem without gaining much weight but at least mine has stabilised. For years I was around 60 kg but I started to loose a lot with SIBO etc a few years ago. I’m now 46kg. I think I’m now about 5ft 6 but was taller (osteoporosis in my back). Ive never really found a supplement I like but I’ve started making my own smoothies and I found this website:

healthline.com/nutrition/pr...

You can swop the honey for maple syrup which I find better for my tum at times. You could use vegan milk but I use organic full cream with lactase added as it has more fat. Arla do a lactose free one but use mixed sourced milk some from factories. You can also buy protein supplements to add such as whey.

Daylesford is lovely milk. Not homogenised and they look after their cows. It’s not cheap but can get from Ocado. Probably cheaper than a bought supplement!

Hope you find something to help