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Posts posted by summer

  1. I also have low blood pressure, it has times dropped to 85/60 or thereabouts, my Cardiologist who I see for Tachycardia, wants me to eat more salt. Since having my Ileostomy, I have been told to add salt and also a banana into my diet, for pottasium.


    I constantly feel light headed and sometimes shaky, so I also drink plenty of fluids, which helps sometimes.

  2. I have swallowed a nasal gastric tube recently, or I should say forced to swallow, the tube went through the nose, into the back of the throat into the stomach.


    I had complications following a Loop Ileostomy, had an obstruction, and it wasn't very pleasant. I was awake during the procedure, wasn't sedated, due to the urgency there was no time for sedation or anything.


    I'm not too sure though, whether this is similar to what you are going to have.



  3. Thank you all so much for all the good wishes, it is much

    appreciated. :thank-you:


    I am starting to get nervous now, only 5 more days to go :emoticon-insomnia: . I think

    waiting is the hardest, so much to think about, I shall be glad when it is over. I start the

    bowel prep on Tuesday and again Wednesday, nothing to eat only fluids, so I shall be well and

    truly exhausted for Thursday operation.


    I shall let you all know how I get on.


    Best wishes



  4. Hello everyone, I haven't posted on here for sometime, but do pop in and read

    the posts from time to time.


    Next Thursday, I will be having an Ileostomy, hopefully that will resolve

    some of my bowel issues. I just got back from seeing the stoma nurse, and

    she has marked the site for the stoma.


    I wish next week would come sooner, I am getting nervous now, and know I

    am in for a horrendous week. I have to take bowel prep. for 2 whole days,

    fluids only, before the Ileostomy. I keep telling myself, this will be the

    last time, I have to take it.


    So goodbye toilet, goodbye nausea/vomiting, good bye cramps, good bye to all of the problems

    I have had to endure the last few years.


    From next Thursday, hopefully I can get some of my life back, and will look forward.


    Thanks for listening.


    Summer :emoticon-hug:

  5. I am on a waiting list to have a loop ileostomy, hopefully within the next 3 months, and am just wondering how many people on this forum that have had to go down this path?. And also their experiences, pros and cons.


    I have Limited/crest scleroderma diagnosed in 2007.


    Many thanks


    Summer :emoticon-dont-know:

  6. I have never heard of Valley Fever, I live in Australia, and have had Q fever over the last few years. I had a blood test which tested positive for that, but never had any symptoms.


    I have just looked on the internet to see what Valley fever is, it sounds like the Australian version of Q Fever. I had the health department call me when I tested positive for it a few years ago, asked me whether I had been around livestock and goats. At that time, we were living in an rural area with a lot of acreage, and I do know that goats were living on the land at the time.


    Strangely enough the doctor that tested me, mentioned that I was the fifth Scleroderma patient to test positive for Q Fever.


    Take care


  7. I am applying for disability, and getting my rheumatologist to fill out the necessary paperwork in a couple of weeks. Apparently I will also need to have an interview with Centrelink about all the issues that I am having.


    Does anyone have any advice for me, and also what to expect?


    Thanking you all in advance,


    Summer :thank-you:

  8. I haven't posted for some time, but I have CREST/Limited Scleroderma, with

    bowel involvement.


    I take it that there is a lot of bowel problems with people on this forum, and am wondering, what treatment you have had, and whether you have had to resort to having an ileostomy?


    Thanking you in advance.



  9. I watched the documentary last night on SBS. I was disappointed that they didn't go into more depth about the lady with scleroderma. They barely touched the surface.


    I don't know whether it was me, but I found that there was more coverage on the other two cancer patients, then the lady with Diffuse Scleroderma.


    I'm interested to know, what others thought of it.


    Summer :VeryHappy:

  10. I'm not too sure, whether I am allowed to post this.


    Next Tuesday on an SBS one channel on television at 8.30pm, Melbourne time, there is a documentary on TV.


    It is about 3 terminally ill people, who have basically, been diagnosed with different diseases. One of them is a young lady, with children, who is diagnosed with Diffused Systemic Sclerosis, (Scleroderma).


    That is basically all I know about this program, but what I can gather by the adverts on tv, it is a sad story, so It may not be suitable for some people, who have just been diagnosed.


    If anyone requires anymore information, they can PM me.


    Many thanks


  11. Thanks for all of the replies; sorry it has taken some time to answer.


    The good news is, that I only had the jaw pain stiffness for 3 days, now it has disappeared. My cracked lips have also healed.


    How do our mouths get smaller, with scleroderma? Does it shrink inside or outside or both?


    Many thanks

    Summer :emoticon-hug:

  12. Hello everyone, I haven't posted here for some time, but do check in and read posts on a daily basis.


    For the last couple of weeks, I have been waking up in the morning, with cracked lips, on the sides of the mouth. I do put lanolin on my lips every night, especially the corner areas, but it still doesn't stop them from cracking. I have also noticed that my mouth is getting much smaller these days.


    This morning I woke up to a stiff jaw, on one side of the face, near the ear. It doesn't hurt if I open my mouth, but does hurt, when I close my mouth, or clench my teeth. It is a weird feeling.


    I am wondering whether anyone else has experience this. By the way, I have Limited//crest scleroderma, and was diagnosed in 2007.


    Thanking you all in advance :thank-you:



  13. I finally made it down to the hospital to see my Gastro doctor. My bowels and digestive areas, have been terrible for the last 2 years. Numerous times in the toilet, every few days, with nausea, vomiting, cramps, constipation with diarrhea, and also hemorrhoids. I have experimenting with my diet, low fat, high fat, low fibre, high fibre, and also many other diets. I have had Colonoscopy/gastroscopy, last year, all was normal, biopsies and Celiac testing, all fine. So I told my gastro, I had had enough, I have no quality of life left. When I go out, I'm always searching for the toilets, sometimes am stuck in a public toilet for 2 hours, at a time, as I can't drive home, because of the urgency to go every couple of minutes. Enough is enough, I want something done regarding surgery to my bowels, he has referred me onto a surgeon. Then I can discuss with my surgeon different options, regarding Ileostomy and other things.


    As much as I am sad, that things have come to this, I am also relieved. Hopefully I will be able to see the light at the end of the tunnel.


    I would be interested in all those that have had surgery on the bowels,and there opinions please.


    I was diagnosed in 2007 with Limited/Crest Scleroderma, and have the RE, in the crest, and have Fibromyalgia, Gerd, Tachycardia and other things.


    Many thanks



  14. Finally made it to the dentist, I had an xray taken, decay in the centre of the tooth right down to the roots :temper-tantrum: . I was asked whether I was in any pain, so I said no, only slightly if I eat on that side of the mouth. So, I had it filled, the dentist put a child's block into my mouth, so I could relax my jaw, and even that block was too big :( .


    The dentist mentioned that I hardly had any saliva in my mouth, which I suspected anyway, so It looks like I have Sjrogren's, I also have dry itchy eyes. Later on in the day, my tooth started to really throb, so I called the dentist, and she mentioned that there was a lot of trauma, with the filling and all to the tooth, and to give it some time to heal. If the tooth was still throbbing in the next 24 hours, I may have to have it pulled out. So I zonked myself out with pain medication,and slept all night, and woke up this morning, with no pain. So, hopefully things have started to settle down.


    Best wishes



  15. Hi Joelf,

    It is morning here in Australia, I hope to go to the dentist in one more hour. That is if I can get there. I know I am going to have bowel problems today as well, so I am hoping I don't need to go to the toilet :temper-tantrum: .


    Also, I need to see my Gastro doctor today, in the afternoon, and have to take my son with me. It is no fun for him, with me stuck in the toilet :emoticon-bang-head: .


    I'll let you know how I get on.


    Many thanks



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