Jac

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Everything posted by Jac

  1. Hi Msjess and others :emoticons-clap: You are discovering what I have discovered - that the medics don't always believe you even though you know your body better than anyone and are fobbed off on a regular basis. It is so tough when you know what's going on but nobody takes you seriously. I presented with what I thought was rheumatoid arthritis in my hands 3 years ago and was told I was imagining it and I probably had wear and tear (at age 40, yeh) and to get used to it. I was denied a rheumatoid factor test because I didn't need it. Fast forward to March this year and my hands are worse, and my hips, knees, shoulders, elbows etc - I was given a rheumatoid factor test by my hospital and it was 'off the scale' apparently. I have gone 3 years with no treatment for a disabling condition. When I complained to the practice manager, the general practitioner I saw at the time denied I'd ever presented with joint issues and mysteriously there was nothing recorded on my medical records! You have to be quite assertive sometimes, medics find this disease hard to understand because it is so diverse. Also this site has been a valuable resource for information and I now go armed with information when I see the medics (tomorrow again - haematology this time) - I'm making it clear that I won't be pushed around and I want to treatment I need and deserve. Chin up love, and we'll help all we can. I hope you get some understanding in your journey.
  2. Loperamide is the one I got prescribed but it is basically the main content of Imodium and other over the counter stuff. If the bowel is overactive and going into spasm like mine does, try mebeverine which is an anti-spasmodic. My Dr prescribed this - 2 tablets 20 mins before a meal and it has helped. Also get some diet information - a dietician will help you to reduce discomfort and evacuation by eliminating foods that might be causing a problem for you. It never goes away but it does improve. Well mine has. I have also found cutting out coffee and other caffeine drinks has made a HUGE difference to my whole GI tract. Hope that helps Christine - sending a smile!
  3. Hi there Peeps! Wondered if anyone else gets tightening skin on the hands and wrists? I have dry skin to begin with, eczema diagnosis aged 5 and had it ever since to varying degrees - treated with hydro-cortisone creams and prednisolone from time to time. It has been not too bad over the last 2/3 years. BUT I have noticed recently that the skin on my hands and wrist and lower arms too a bit, has become dry to the point my hands are starting to claw and it is difficult to stretch them out. The skin around the knuckles and joints is particularly bad. And ideas on relief for this? Bear in mind I am allergic to lanolin so that rules out some stuff. No pain, no irritation as such, just dry hardening skin limiting movement. I'm guessing you seasoned professionals will offer more help than general practitioner does.
  4. Thanks - I think Amanda is at the point of needing an Oscar for her outstanding film performances! :D
  5. Hi there - (if this is in the wrong place, I apologise and please move it) - I wonder how people cope with some of the emotional backlash of this disease. I try and be positive but there are times - often at night when I can't sleep, I just dissolve and feel hopeless and useless and in pain and alone etc. I have a Mum who is a great support but she does not live with me - I live alone. So how do others cope at times when it really hits you and just knocks you for six?
  6. Hi, Yes I will let others know how the stomach thing goes. There is a high incidence in my family history of stomach and bowel cancers so I will need to be tested for that genetic disposition I suspect but it is because of this I'm considering ALL my options. I see the gastroenterologist in August and I am fortunate to have a super consultant who has so far been very understanding and helpful. Might go join the pity party next time I have a difficult day!
  7. Hi there, I have been told I am suffering from a variety of malabsorption issues. Gluten has been ruled out now, so we're starting the journey on finding the specifics out. Although I have realised coffee and orange juice causes me problems and since cutting them out have been a lot better. I wasn't aware you could have a fructose malabsorption so am interested to see your post. I am sure I will be tested for that at some point. I also discovered some foods, e.g. raw onions, peppers, rhubarb, pineapple cause abdominal discomfort but have realised I can eat them in small portions and be okay. It's hard when the 'healthy' foods cause issues. Good Luck charliehorse - and let us know because I'd be interested in results. THANKS!
  8. You guys are great! It is hard as I am discovering - I have several symptoms all of which are being treated at the same time and some are more severe than others. I have given up with people generally and I just say I'm okay if they ask how I am and then comment I hope that's what they want to hear! It's like you say, you come out of hospital after some treatment and the assumption is you are cured. But I did have a lift yesterday because I went for a blood test. I have been told because my veins keep collapsing I have to have blood taken by the senior practise nurse at my surgery. I had a 20 minute appointment and she was really nice and understanding about what I'm going through. Her first comment was - what a hard time I'd had. So I shared a bit of where I was and what I was doing and she told me not to be too hard on myself and that I was doing really well. I feel I could go back to her if I needed to -she was lovely and a health care professional who I felt did care and wanted to help me. Got 2 more appointments coming up at the hospital, mainly to do with the scarring and damage to my gullet and stomach. I wondered if anyone has had their stomach (or anything else) removed to reduce the chance of problems occurring - I'm thinking about it, given I have a pre-cancerous condition. It would be a preventative measure. Feel ok today and the sun is shining.
  9. Hi - thanks for that. I think what I wanted from my doctor was a logical response - a way forward to coping with the symptoms of this disease and also the side effects caused by the medication. I don't expect her to understand what I'm going through but as a professional with a duty of care towards me as a patient I expect either suggestions of how to deal with things or a referral to someone else who can help me. One of the difficult things is every time I have some treatment or go to the hospital people think - oh you must be better now. It's quite difficult explaining the concept of long term chronic illness, especially one that no-one has ever heard of. But on a more positive note - I have felt well enough this week to do a little bit of swimming and walking which always makes me feel brighter :emoticons-clap: - I figure if I can eat a good diet and exercise (gently) it will all be for the good!
  10. Hi - I like the idea of any kind of party, as long as there is lots of ice cream! Had a really difficult appointment yesterday which has made things worse. I saw my general practitioner and explained some of the side effects of medication I'm on and how it is making other symptoms worse (in my opinion) - I didn't expect the following response - 'Well when you have a chronic long term illness it's easy to over-analyze every ache or pain you get and you even begin to imagine things that might not be there.' To which I responded - oh so this is all in my head then, the fact I have skin hardening on my arms, hands and legs is all in my mind, the mis-shapened joints on my hand are an illusion (because of rheumatoid arthiritis), the fact I spend most nights bringing up acid and having burning pains in my chest as a result, that's not really happening, I'm dreaming it am I? etc etc. I need to change doctors, I think - but it made me feel even lower and that nobody has any understanding of what I'm going through.
  11. Thanks for that. My diet and next Gastroenterology appointment is 14th August. I am finding ways of relieving some of the symptoms already - I have cut off coffee (I drink espresso) and that has helped quite a lot. I have cut down on tea and switched to green tea. I don't drink alcohol so that isn't an issue. I have cut out orange juice and switched to apple or cranberry juice. That has made quite a big difference. I have also found that raw peppers, onions and tomatoes irritate me, which is a shame because I love salad but I can't really have them raw. But I can tolerate them cooked so can maintain a healthy diet. So small changes are already helping and it's a bit of trial and error at the moment. And very much what works for me because I'm learning this disease affects us all differently.
  12. I think I'm still happy - :emoticon-dont-know: I got the results from all my GI testing:- I have gastro-oesphagus refulx disease (which I had guessed) and there is some scarring in the gullet which is hardening and may need some treatment (stretching I guess) at some point. A few problems with my stomach and duodenum which can be treated with meds (more meds). Some inflammation in the bowel too which he (gastro doctor) says is ulcerative colitis. So few problems but seemingly treatable. I'm waiting to see a dietician - I'm keen to control as many symptoms as I can through diet etc. I feel more relaxed about future tests now too,of which there will be many.
  13. Hi Everyone! Thank you soooo much because what I learned here helped me on Monday and the Dr said I was a model patient :emoticons-line-dance: . I had the local throat spray for the endoscopy and sedation for the colonoscopy. Both procedures went fine and the endoscopy even without sedation was ok - no worse than visiting the dentist. Initial results were encouraging - some damage but not too bad. I have to go back in a couple of weeks for biopsies results. TIP - If you're having a preparation for bowel cleansing - a sip of clear lemonade held at the back of the mouth whilst you gulp a gobfull of the 'stuff' and swallow - goes down a dream and you don't taste it so bad. I was a bit rough yesterday but feel better today and am going out for a nice lunch with Mum! Feel happy again.
  14. Hi there - THANK YOU! so much for that ,it was so useful and I feel a bit better. I have my date now of Monday 20th May to go and have all my tests done so am nervous but feel a bit more encouraged that it will be ok. The hospital have agreed that my Mum can be there before and after and that will help me a lot. Jac x.
  15. Hi Judyt - It would be good to read how others cope with appointments, particularly the more invasive ones like endoscopies etc - it's a big forum, you couldn't link me could you an entry or place to find some helpful stuff? THANKS!
  16. Hi Folks - Found this place at last. I was diagnosed with Systemic Sclerosis about a month ago although it took them 3 years to decide what was wrong with me. I have got Raynaud's and Sjogren's previously. Am now waiting for gastrointestinal investigations and lung stuff because I'm very clogged up in my lungs and something showed on X-Ray, probably fibrosis starting. I am also autistic which complicates things in 2 ways - 1) I have no friends or support so I do this pretty much on my own (I have an elderly mother but she is limited in what she can do for me) and 2) I am not good at hospitals and have some difficulty communicating and hate being touched which makes some procedures difficult and distressing for me and so far my local hospital have been less than understanding. I am very scared about my future and feel unwell a lot of the time and lonely too. Am hoping a forum like this will be good to be part of. If I post stuff in the wrong place, just tell me!
  17. Hey - no-one posted here for a while but I found it!! (Am still exploring) I had a good day today, the first for several weeks even though I am waiting in dread for hospital appointments, I managed to put them out of my head and enjoy some sunshine which was nice. When the sun shines, everything feels happier doesn't it?
  18. It's really important to see a dietician or nutritionist. I've always had a healthy diet but have discoverd I am severly anaemic due to this disease and associated complications and also suspected gluten intolerance (waiting for tests for this) and the diet guru helped me tweak my pretty good diet and it has helped. I eat lots of immune boosting foods like peppers, nuts (almonds especially), leafy green vegetables, oatmeal etc. I don't drink and I have cut down tea and coffee and started with herbal and green tea. After just 3 weeks I can see a difference in my joints, they are not as sore (I have rheumatoid arthritis) and a healthy diet keeps my weight down too which also is a good thing I have also been given an iron supplement for the time being but the diet guru noticed my diet was short in iron because I don't eat a lot of meat and not enough green stuff so I have corrected that and I hope for a healthier future. It was good to get that input - hope that help's you! Am dreading if I have coeliac disease because I love making and eating bread. Finger's crossed it ain't that!
  19. Hi there! I'm fairly new diagnosed too and have found this website and forum invaluable for info and stuff and am getting my head round forum posting now. It's a shock to get a diagnosis like this but a few weeks down the line I'm getting used to it and all it brings - folk here are great and I'm planning on asking loads of questions at some point and I know they will help - you'll get the same no doubt!
  20. Thanks everyone, it has really helped to know I have a place where I can ask questions and get some answers and support. Still waiting for next appointments and still taking the pills - lots of them but I think some of them are starting to work because I haven't had a Raynaud's episode at all this week which is the first time in a long time so that's good! But feeling lousy otherwise. I'll stay in touch - thanks guys!