sherrytrifle

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About sherrytrifle

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  1. Dear Sandy, I've been away from the site for a long while and just logged on today. Very sad to hear your news. Really wanted to write a few words. It's hard to know what to say. You have always been a positive and valuable member of this forum. I wish you timeless bliss and tranquillity. When you get there say “oy … I want a WORD.” Relieved for you that the radiotherapy wasn't as dreadful as feared. The way you have handled yourself has shown me I can learn a lot from you. Sherrytrifle
  2. Hi Chris I read your post with interest. I also have bowel issues. Are you seeing a gastroenterologist maybe your rhematologist will point you in that direction. I echo what Joelf has said. I have bacteria overflow, which increased in velocity over the months to the point where I was feebly weak emotionally and physically. At Addenbrookes I am now on a 3 week rollover of 3 antibiotics with a weeks break in between. This has really changed my life and allowed me to put on 3 stone, I look a lot healthier, and my haemoglobin blood count is stable. I now include foods I previously couldn't eat, ie rice pasta etc .. Some foods maybe upsetting the balance of bacteria in your gut? Some foods make life harder and you'll find out by trial and error which ones are causing trouble.. I chose to eat one different thing a day and wait to see if there was an upset to find the culprit. Oil present in meats, double/single cream, butter or margarine on bread (no matter how slight), soggy pastry in pies, spices, curries, crumble in puddings, grease, apples, the onion family and probiotics can all ferment in the gut. And that list isn't exhaustive. And it all depends on what colony is in the gut at the time. Anyway ask for a gut doctor. :emoticons-group-hug:
  3. Hi Sandy welcome back. So sorry you had to go through such a terrible ordeal in hospital, and sorry you lost your mum. Am delighted you are slowly on the mend. Your granddaughter will be a bundle of fun and will keep you occupied for sure. Glad you made it home for holiday. Keep us posted :emoticons-yes:
  4. Sandy All the best. Your'e on the road to recovery :emoticon-congratulations:
  5. Many thanks joelf
  6. Hi everyone I kept my lung function appointment. Because I didn't have a current haemoglobin result to hand TLCO 57%, however was told its probably over 60%. VA - volume (total lung surface available for gas exchange) 81%. KCO (rate of carbon monoxide uptake) 72%. I was told my reduced lung performance is probably due to restriction of lungs by muscles rather than any scarring of tissue. Seems consistent since 09. So no worse
  7. Hello Sandy I'm also very sorry to read your news, but am pleased that they can create a new oesophagus, and that the disease hasn't spread. You seem to have the right attitude. Many best wishes
  8. Hi everyone As you know I have diffuse scleroderma with polymyositis since 2005. I finally had my colonoscopy at Addenbrookes yesterday. I was told the camera (sigmascope) would be travelling all the way up to the hip. I gulped silently. My consultant told me I wouldn't need an anaesthetic as it would only take 10 minutes. I was taken to the recovery ward and was prepared for the enema. The first attempt didn't work. The doctor came and said they weren't going to go up very high; there was something in particular he needed to see so it didn't matter. Relieved. Wondered what I'd set myself up for by refusing anaesthetics. It did take 5 minutes, some moments were very uncomfortable verging on pain, but it was over very quickly. Verdict was there was nothing nasty up there and everything was satisfactory. I next see the gastro doctor in the Autumn. More good news, I also have just seen my rheumatologist There was a gasp of surprise because of my vast weight gain. She was beaming as she looked at me, The last time she saw me I was 7 stone 5 in winter 2010. I am now 9 stone 4, with a good appetite. The rheumatologist made a point of saying that I have gained a good and honest weight because I no longer need prednisolone to do it. We gradually reduced the prednisolone over the years. Another Rheumatologist had seen my condition and it was claimed that my condition has improved and my body is trying to get better. There is a gradual incline up in improvement in my lung function tests (one of which I have next month). My skin test is mostly graded as now normal, compared to how thick and shiny it was in the beginning and also a surprising improvement in heart output. I can't remember the factual terms used, but I was told most sufferers output performs from 50 – 55 and then plateaus, my test reveals it's trying to head for 60 (what these numbers represent I don't know). But 60 was classed as normal. I was really pleased and surprised. Whether it reaches it or not we'll see. Although scleroderma affects us all differently I hope this gives some of you some hope. I am on mycophenalate, I had 6 pulses of cyclophosphamide and 40mg of prednisolone in the early days. My swallowing is now normal, I'm not particularly breathless, and I am on anti-biotics all the time now for bowel involvement. However, I still have poor mobility. Will keep you posted more regularly. Sherrytrifle
  9. Thanks everyone for your replies. You've been very helpful. I needn't be so scared. I'll probably take the sedated option, both procedures are being done on the same day. I've been given a liquid to induce my own enema at home, I will be right near the toilet. Will let you know when I've had it done. (not for a few weeks yet). I'm so glad this forum exists!
  10. Hi everyone It's been a long time since I was here. I'm due to have a colonoscopy and the other one where a camera is put down the oesophagus. Can any one who has had this tell me what to expect? Thanks
  11. You've all been so helpful. I take your point Jeannie about the bleeding even though it is only a little bit first thing in the morning, and will mention it. Shelley and Amanda, your suggestion really rings true for me, the reflux is really under poor control, I just remembered that years ago my local general practitioner's surgery took away the original prescribed anti reflux pill, pantoprazole that my own rheumatologist had recommended and put me on omeprazole and at a much lower dose too, this was to help manage their finances (cheaper for them). The rheumatologist was very unimpressed at the time and said "mm if it works". So I'm booked to see my general practitioner soon to correct this issue, will keep you informed. Due to see rheumatologist next month although I have lung function and ECG sooner.
  12. Hello again, I sometimes have blood in my reflux in the morning has anyone else noticed this. I think the consultant was only concerned if the blood was a very dark colour.
  13. Hi All, I was a stable 10 stone 6 before I was diagnosed five years ago. I was 8 stone but recently I've lost an incredible amount of weight and am now 7 stone 5. I've been prescribed special drinks. Like everyone else bones protrude which makes sitting in hard backed chairs very uncomfortable.
  14. Hi Deb1million Thanks for your reply. I'm sorry to hear you have so many conditions, It must drag you down at times, but yes gardening is a life saver and home grown veg are the best. Possibly the more ailments that brings us down the more intense and blissful those few precious moments are. We are hardy planters. None of us relish hospital appointments and doctors surgeries, as soon as possible I'm thinking, "I just want to get back to my garden, leave me alone". this summer is Open garden visiting time, if my body or the weather will let me. I wonder what other types of escapism other sclero friends use I would have sent a pm but I've got to work out how to receive one. sherrytrifle.
  15. Dear Amanda Pleased to read your news is better than expected. Sounds like you're in good hands. They know so much about the workings of the heart these days. sherrytrifle