Starting two weeks before Christmas ‘23 I have had over eleven weeks in hospital and am now on total parenteral nutrition, scleroderma resulting in failed small intestine.
Following each hospital stay I have had to get my strength back, the last week was end November ‘24 and I am still using a rollator and finding movement very difficult. Any experience of how to regain mobility would be much appreciated.
You poor thing - that’s a lot of time in hospital - no wonder you’re deconditioned. I was asked to start TPN prior to urgent stoma surgery last year. Fortunately I managed to gain just enough weight that my dietician allowed me to go through with the surgery for colostomy without it and since then I’ve gained another kilo. I’m assuming you have access to a physiotherapist while in hospital but if not then could you perhaps request that they come to you and get you started on regular exercises to build up muscle tone?
I lost a huge amount of weight from gastroparesis and slow transit of scleroderma and became very decondotioned. I now have a Fitbit and walk our dogs each day - try to build up my steps and keep my cardio workout levels at a reasonable level. Ironically a lot of my daily exercise is going up and down the stairs to the toilet to empty stoma back down again to my work room! I try to turn this into a keep fit challenge and have an average personal best of 10k steps. It usually pans out at more like 7-9k steps though but I’m quite competitive with myself! The best way to is to be realistic and make it a form of exercise you enjoy and can build into your daily routine, whether in hospital or home or with or without a mobility aid. My rolator is now just for moving around the house and special occasions eg museums, galleries, public transport, holidays or if I need to know I can sit down
Thank you Old Ted - Stirling stuff. Physio calling by today - I am a poor adherent to exercise regime, but will persist.
Hello Parenteral, sounds to me like you would benefit from some physio therapy, could you ask at your doctors surgery ? I know many let you self refer now. Sounds like you use some exercises that you could do in your chair to start to get some strength back. I do know that it will take time so anything you can do regularly will help, even if it’s just a few steps round the house a day. Take care.
Thank you Clangerscat - will take your advice. I’m too good on avoidance tactics.
I was exactly the same 3 years ago, spent 6 weeks in hospital and then TPN nightly once I got home due to severe weight loss and intestinal failure. Muscle tone completely gone and unable to do most household tasks. I set myself small daily tasks I.e. wash dishes, feed dog etc. The fatigue is really bad but just do what I can when I can. Don't beat yourself up that you can't do things and accept as much help from family and friends. I'm still not back to what I was and don't suppose I e ve r will be but do what I can, take care xx
Hello Lorfal
My fear is that the scleroderma is progressing. My drugs - esomeprazol, prucalopride, and erythromycin, only things I take. Guess I need to get that idea out of my head. Hopefully the fatigue not too soul-destroying for you. Best wishes
I am on high doses of vitamins, magnesium, calcichew and vitamin D to compensate for the gut not absorbing food properly maybe something you need to talk about with your doctor as with intestinal failure we don't get what we need from normal food xx
Hi Lorfal
Am now 100% intravenous nourishment, overnight, with bespoke infusion worked out by nutrition team from failed intestine unit. (Eating now a spectator sport) Have assumed that would cover all my needs - but will raise your suggestion with them at next appointment. Many thanks
I would think, being on TPN, they are testing your micronutrients regularly? They test mine annually because I’m low in thiamine and sodium so my neurologist requested these for me when I was getting IVIG. I’m prescribed B1 to take orally. I only take supplements if I’m prescribed them. The ones they take annually have to be kept out of direct light so you’d probably know as they usually wrap them in tinfoil or paper as soon as they’re drawn.
Hello Old Ted
Thanks for your advice. I think you have a good supportive team. So far I’ve been taken on by the gastro specialists, also lungs as they’re affected, but rheumatology is keeping it all low key. However, I have been impressed by what has been dealt with.
That is good. I’m in the opposite situation. Lack of GI input means I’ve had to lean heavily on general rheumatology (good but out of their depth) and neurology (same). I’m not paranoid that it’s just me as I have made a really good friend with systemic sclerosis and she has experienced even worse than I have over the years. None of them know a lot about systemic sclerosis here.
Impressed that you found Prof. Denton helpful. I didn’t find solutions from the RFH. Friendly but not enough investigation. My guts became my main problem. Dealing with diarrhoea so saw a gut specialist privately which finally led to NHS gastro team. 2022 X-ray revealed faecal compaction, despite the runs, only acknowledged as a problem and dealt with last year.
I didn’t need to ask much of Prof Denton because I already had all my blood test results, letters, echo and PFTs, pics of my Raynaud’s and my Scottish rheumatologist had already done the upper GI legwork in getting Gastroparesis and SIBO confirmed and colorectal here had confirmed slow transit and I reported fecal impaction and also overflow incontinence.
So all he had to do was check my nailfold capillaries, do a physical exam confirming I’m hypermobile in my skin as well as joints - and that was that, diagnosis unequivocal as they say.
I think I’m going to ask my rheumatologist to refer me to RFH gastro team because mine here just don’t seem remotely interested unless it’s cancer or severe IBD. And i have worsening symptoms of some sort of colitis since my stoma so I think I’m going to need to go elsewhere - even if I have to pay to get a second opinion. I’m bleeding a lot from my stoma and rectally yet told I may have long wait for a colonoscopy - which can’t be right. But then again, thanks to systemic sclerosis, I’m quite a bleeder these days!
Abnormal ECG
Scared, Muscle Aches, Progression
Seen rheumatologist at last
