Newly diagnosed Systemic Scleroderma

Hello, I have Gastrointestinal problems amongst many other things! Due to my oesophagus not working I am on permanent Total Parental Nutrition (TPN) and am not able to eat normal food at all. The only thing I can drink is water. Eating is such a social thing, it makes me very depressed.

Is there anyone else out there in the same situation??

12 Replies

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  • Hi shani60,

    I Also have gastroparesis but mine is currently manageable with medication & a very restricted diet. I understand the sadness you have around losing the ability to eat. It is very isolating. I hope you're having a nice day today I am only recently diagnosed with the gastro problems after 2 years of incompetents callin g it IBS! So I have not got my head around it yet

  • It really beggars belief that in this day and age somebody could have Scleroderma that long and that seriously. I know I am being harsh but it makes me cross. I am sort of in the same boat, it took from my first gastro attack when I was about 11 until 59years to get a diagnosis, by which time my bowel was rendered useless and my stomach was giving me trouble. Not as bad as you but I have Achalasia and have had times when I was sure I was going to be heading down the TPN road.

    I don't know how I would cope with that eventuality, but even for me eating is something that all my friends know is a problem for me. I tell them how it is and in most cases they are so solicitous and careful about what they offer me that it makes all the difference to me. But I can still eat fairly normally so I am sorry you have such a problem and I hope somebody comes along who has a good idea or two.

  • Hi judyt

    Thank you for replying to me. This time last year I was in Orlando on holiday and one year later I am not able to eat, in a wheelchair as the skin on my feet and legs is so tight I can't flex, bend or stretch them! Had a cardiac arrest last July and well, you name it I have it!

    But trying to keep positive and grateful the TPN is keeping me alive.

    Shani60

  • Thank you for your kind reply. Apart from not eating I am also in a wheelchair because my skin on my feet and legs is so tight i have no flexibility. Like you, I haven't got my head around it either, its a horrible disease and no one seems to have heard of it either!

    Look after yourself.

    Shani60

  • Hi, I know how you feel. I have EDS and gastroparesis as a result. I eat liquid/semi liquid food in small amounts. even having drink of water is painful, and I feel like I've had a 10 course meal on even a small snack. I have 24/7 pain as a result of both the joint elements and the food elements. I work in a school and don't eat or drink until I get home, as I would be in too much pain, and feel too sick to drive home. I am exhausted all of the time. Work keeps my mind off the pain, but colleagues eat and drink all day, talk about food and meet up in cafes and restaurants etc. I weight 5 stone 11, while they go to weight watchers, and think I'm the lucky one. I wear 7 layers of clothes most days, as I feel conscious about my thin body. I have no social life, as I am too exhausted and also cannot eat out anyway. My partner and I therefore don't go out for a meal or anything like that. I also cook his meals etc, but we never eat the same. I have had the same main food for five years now, as if it is relatively 'safe' I fear changing it. It does get frustrating not having the luxury of simply buying food ready made, a pack of sandwiches etc, like others. Also not having a social life is lonely, although I do have a partner. My condition is getting worse, so I am having a PEG fitted, and will no doubt feed in the future via it and the have TPN after that. As regards my EDS, the pain is so great that I know that a wheelchair is my future too. Life is tough for some and seems so easy for others. It's impossible to stay positive all of the time, and we can';t help but compare ourselves and our lives with others. Yes, I count my blessings etc, but I know what you mean about feeling depressed, but that is a slippery slope, so I am determined to keep it at bay! Try and remember that no matter how bad it gets, someone somewhere is like you, no doubt thinking the same and feeling they are alone... together, we can take away the loneliness, if only to share on sites like these. Take care x

  • Hi Disc

    It was so good to read your message and know that I am not the only one whose social life is affected. It was my husband's birthday over the weekend and we didn't go out for a meal or anything because I can't eat! I am in a wheelchair now and my poor husband pushes me around, dresses me because my hands are riddled with RA as well. I am not able to drive now and so miss the independence but do feel better knowing there are other people out there who understand what this condition does to you.

    Take care

    shani60

  • Hi I had similar problems my scleroderma stopped the muscles working in my stomach and I could only eat a few mouthfuls before I was full. My food stuck for days then I'd spend a day in the bathroom I went down to 5 stone as I could keep no vitamins inside me. In Dec 2013 I had an ileostomy and went on Tpn I now weigh 9 stone and they are gradually reducing my Tpn. I feel so much better and can now eat although only small meals. I don't know if this is a possible route for you?

    Good luck with what you do

  • Hi Gillig, thanks for replying. sorry to show my ignorance but what is an ileostomy and how does it work? I seem to have lost my appetite, guess the TPN is keeping me full and also my taste buds. If I try a little soup, I can only manage a couple of spoonfuls and don't enjoy it and then end up being sick!

    Shani60

  • Hi sorry didn't think about you not knowing. The ileostomy means I have a bag on my side and waste goes in there instead of using the toilet. It's not ideal but gives me a bit of life back as I was afraid of being more than 2 mins from a loo before. The doc is talking about dropping my Tpn a bit as a time which will be good. I find ive got a bit more appetite as I have less Tpn. I'm Sorry to hear you are in wheelchair my ankles are getting tighter all the time but I'm managing at moment. Take care. X

  • I have limited system sclerosis and have just started having problems with my gullet, or shall I say I now know what it is. It first started around 18 years ago at a family wedding and I felt so ill but I just thought it was indigestion after having rich food. It happened every time I went to a wedding or for a Christmas night out wth the girls from work. It got far worse around 9 months ago and sent me to the gp who referred me back to my rheumatologist who then sent me for a barium swallow and then I was referred to a general consultant who told me that the epistalitic wave wasn't working properly and kept sticking. I went on to have a gastroscopy which diagnosed a hiatus hernia. I am still waiting to hear from the consultant again. Nothing has been said about diet and although I feel very poorly when I have an attack which can last for weeks, I usually try to eat a little often. I do feel for you not being able to eat properly and it must be very depressing. I just hope that I will not reach that point for a while but who knows. It is certainly something no rheumatologist tells you can happen. All I know is that it makes me very tired and lacking in energy when it happens. Nobody else who doesn't suffer has no idea how debilitating it actually is. Good Luck to everyone who suffers.

  • Hi Paleindian2

    I know what you mean about being tired and having no energy. Everything I do I find exhausting. This time last year I was walking my dog for an hour a day and now I am in a wheelchair. I do all my shopping on line, no longer able to drive and so it goes on. My days are filled with hospital appointments but fortunately I have a caring husband who looks after me and good friends who keep in touch although they must be shocked at my decline. But you have to keep going and hope for a remission at some point!

    Take care

    Shani60

  • Hi Shani,

    Have you considered a Stem Cell transplant? I know it is a radical solution but the research that is being done is so intense that I am starting to hear about folks who have gone down that road and it has been successful. Particularly for Diffuse which is moving fast. My Systemic has been slow and relentless all my life and the only recourse for me is to deal with each problem as it comes along. Ask your Rheumy and see what they say.

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