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Posts posted by Susannah

  1. Hello again, and thankyou all so much for your encouragement and well wishes. Its really so nice to post something that has gone well for a change as so much doesn't with this disease.


    Nina - Sorry to take so long to reply to you. Im sorry to hear of your trouble, its such a pain isnt it!. I will try to contact my gastro doctor over the next few days and find out as much as I can about the 'banding' technique for you. Im not aware of anything online, so far at least I havnt been able to find anything, but will keep trying. My own bleeding seemed to come from the centre to lower part of the stomach. I can no longer recieve any more argon treatments as the scar tissue left behind is closing up the passage to the duodenum, so if the banding didn't work, i have no idea what the next step would be, so thankfully it did so far! Hopefully I will have some news for you soon Nina!


    Many Hugs


    susannah x

  2. Hi All


    We moved house and I just couldn't seem to get the connection here again, then when I did I couldn't remember my password etc. I'm a bit slow at times and realized I could send an email to one of our lovely experts and hey presto, finally success!


    Its been a while since I posted and I'm happy to say there's no major dramas for 7 months, yippee. Just to refresh some memories, I'd gone through 18 months of blood transfusions and stomach treatment usually in the form of a laser (APC) for GAVE (Gastri Antral Vascular Ecstasia) or in short Watermelon Stomach. I've had more than 20 transfusions and 8 trips across the strait by plane to Wellington for the treatment. In February this year was my second to last appointment (although I didn't know it then) for treatment and they used a new technique called 'Banding' which is like tailing a lamb. While the tube and camera is down the throat, the tube gently picks up a portion of stomach skin and puts a band around the base which in time the little grape left behind falls off and leaves a much deeper and wider healed patch than laser could ever do. Two bands were added at this appointment. In April I needed more blood with a trip to Wellington that always follows, so more banding was done and I'm thrilled to say I haven't been back nor needed any blood since. I'm not sure if this technique is used in other countries, but for those who have struggled with blood loss like myself, it may be worth investigating. I can't believe the energy I have now, its been such a gift!


    I've been looking forward to getting back on here and catching up with you all, and seeing who is new. I'd like to welcome all the new ones whom I haven't met yet and are glad you found us here, there is nothing like those who understand exactly what its like!


    Susannah x

  3. Hello


    I only just discovered that I have a dangerously low vitamin D count. It showed to be 14 instead of being within the 50-100 range, so have been put on tablets (add another one to the pile hehe) once per day for 1 month, then 1 per month for 2 months. Ive no idea what happens after that. I have 3 weekly blood tests via port-a-cath, so it will be re tested each time to see how its going. I haven't read a whole lot about vitamin D deficiency but gather it is the cause of a lot of issues. I wouldn't have had any clue that I have this kind of deficiency as there was nothing really obvious to show it. The reason my physician called for a test was due to not being able to be out in the sun too much and being pretty well covered with clothing because I'm always cold, so its definitely something for us with this condition to be aware of.

    Hope that helps! : )


    Susannah x

  4. I used to push my self in more ways than just excercise and truly believe this has played a huge part in my becoming ill. Now days I am learning to listen to my body and it is working. Im learning to give up the 'shoulds' and 'should nots' and just do whatever I feel at that given moment, which ultimately adds to the peace and rest in my body and is very healing. I have never felt better (since becoming ill that is - hehe). So yeah, as Omaeva said, Balance is the key. There is no magic fomula, just what is right and works for you. Ive come to Accept that I can no longer do what I used to do prior to this illness and that was alot. Ive skydived, biked mega miles, triathlons, gym work, swam, tramping , gardening (oh how I miss the garden! ) just heaps of stuff. Now somedays I settle for a walk down the driveway to collect the mail or a few jobs spread out over the week in town, its just Reality! I hope I dont sound harsh, i certainly dont mean to, this just comes from my own hard experiences and would dearly love to save others from going through the same.

    Thats my 2 cents worth anyway. I hope it helps alittle :rolleyes:


    Susannah x

  5. Hi Debra

    Sorry to hear you are going through this, it is certainly a very challenging sympton of this disease to experience and not easily solved.

    Ive had a port-a-cath in for a year now. I have GAVE too, quite severe. I have a blood test fortnightly, and the odd iron infusion. I just came home tonight from a 5 day course of an Illoprost infusion. Ive had over 20 blood transfusions in the last year whilst trying to treat the GAVE. Unfortunately after 8 laser treatments on the stomach, it still isnt cured. I have another lot in 3 weeks. I love my port for convenience sake and ease of pain, the veins in my arms are pretty much stuffed now, and I highly recommend one for anyone in this situation. I take it, you are looking at having one inserted. I have alot of skin involvement too and have had no issues with healing. I hope this helps

    Susannah x

  6. Well heres another version to add to the confusion. I always thought it was pronounced ' Ray-Nowds' and everyone I know here in NZ sounds it the same. Boy, we really need to be re-educated :lol::lol::lol:

    Susannah x

  7. Hello All

    Ive had the itches from the beginning of my symptoms 2 1/2 years ago and are pretty much used to it now. Im definately with peanut regarding not showering so often. I itch like crazy afterwards, and have gotten used to not having one daily. The skin changes have slowed down/elliminated my oil and sweat production which makes it possible to skip several days and just have a daily sink wash of major areas. I never get wiffy :lol: my hubby washes my feet each night as I can't even reach them anyhow! I got an emolient cream from my dermatologist which is thick, almost as thick as petroleum jelly, which is great for laying down a barrier. This post has reminded me though about the oatmeal based products Ive been meaning to try, so thx for the reminder! One thing I have noticed is, if Im in a different city from where I live, Im hardly itchy. Where I live is wine country, so therefore, there are alot of chemicals in the air and pollen etc. I recently stayed in Wellington and Palmerston North and neither cities grow anything to the scale that is grown here in Marlborough and itching was not an issue at all. Its just interesting to note. I'll try drinking more water too!

    Susannah x

  8. Hi Dave

    As soon as I was first given my cocktail of medication for this illness, I was told, NEVER to eat or drink Grapefruit Juice due to the reaction it can have. Back in my athletic days, I drank water til it came out my ears, but now I just dont like it much, mainly I think because of my stomach issues, it makes me nauseous. I love 'Apple and Pear Juice' and 'Apple and Nectarine Juice', the latter is also esp good for the bowel :rolleyes: . But im not too aware about which juices contains citric acid sorry.

    Susannah x

  9. Hi nan


    Ive had more than 20 blood transfusions over the last 18 months, and 8 sessions of lazer treatment, 9 counting this coming Thursday. Half of those were done with APC and the rest, also my doctors favourite method was done with 'The Snare'. Its his own invention and it definately seems to have a better effect. Unfortunately I can't remember why exactly it is different and better than APC, but I can find out. He says he doesn't understand why its not practiced worldwide because it is so much easier! Im just glad it works! Mind you, with this disease, Im finding its never ever fixed, I seem to still have to keep going back. It has meant though that I dont need transfusions so often, so thats got to be good. Im glad you dont have the same issues, nan, lets hope it stays that way :D


    Take care


    Susannah x

  10. Hi Hilda


    Its so nice to meet you!


    By your post I understand that you are having Illoprost infusions every 6 weeks for 4 says, is that correct? I have it once a year for 5 days, but as my disease gets worse my rheumatologist is increasing it to more often. I understand it is suppose to you warm up the body by opening the blood vessels of which I did feel for a couple of days whilst having it, but looking back I realise I havnt had any raynauds flares/attacks for the whole year that make the hands go white and numb under certain conditions. Some people do need this more often and that is normal for them. I dont think there are any rules about how often the treatment can be had, but its between the doctor and the patient.

    I see you also have Watermelon Stomach - I do too. Mine has caused me to need blood transfusions regularly and lazer treatment on my stomach. I hope yours isnt that bad! There arnt many of us around with this symptom, so Im always interested in those who do.

    I dont know if any of this has helped you but its nice to be able to share experiences all the same.


    Take care



  11. Hi Peggy


    I also have had a port-a-cath in for just over a year now. Mine is in my chest on the right side, just above the breast. It was used the very next day after it was put in as I have regular blood transfusions for GAVE, so of course it was very tender at the time. Now... Im not familiar with IVIG, but I have had Illoprost, which I recieve through my port and is a treatment that lasts for 8 hours a day for 5 days. If this goes through the port too fast, it is agony (I had pain all over and the headache was dreadful). So Im wondering if this is the same for you. As soon as the pump is turned off at the end of the day, the pain subsides until I go back the next morning for the next lot. We did find out though, that it does not have to be this painful, and the doctors should turn the speed down which we got done in the end, and discovered its just to get me out of the hospital alot quicker, needless to say, I wasn't impressed. So, if it is only painful while the treatment is going in, then my quess is, it was going in too fast, and you are within your rights to request that they slow down. Other than that, Im not sure. That is the only experience I have about that. I hope it helps. Do keep us posted as I would like to know for sure what it is.


    Take care Peggy


    Susannah x

  12. ced - I just read your post - I had been on prednisone for over a year and juat weaned off it in the last 2 months. I too didn't realise how well it worked until I came off it, now im so sore and slow and feel like such an old woman, at 37 years old Im tempted to go back on it again just to feel semi normal. Its quite upsetting that the only thing that works so well also has some very dangerous side issues, honestly, what do ya do?

  13. I agree with you KarenLee about the pedicure. I can't reach my toes to clip nails etc as my body is so constricted in the hip and knee joints, so have for the last 9 months gone and got them done professionally. My first treatment consisted of a soak in a foot spa, massage then nails clipped and finally polished but usually I only have the nails clipped and polished, which is cheaper too. I love choosing a different coloured nail varnish everytime.


    Celia - I personally dont recall sensations of tightening, but have found the tightening has been gradual for me over the last 2years since my symptoms

    first showed. The tightening began with my hands first, then crept up the arms and through my neck and chest, it is only slightly firm over my

    trunk, but then is more severe on the inner thigh.


    Susannah x

  14. Wow Barbara


    Ive just been sitting here at my computer reading your blogs and just looked at the clock, its 1.21am. I just LOVE your writing, its so entertaining and honest :lol: . Thank you sooo much, such a delight to read. Your mini zoo sound like such a crack up.


    Keep Warm :D


    Susannah x

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