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Hello, Im Back (Watermelon Stomach)


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9 replies to this topic

#1 Susannah

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Posted 03 November 2008 - 09:07 AM

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

#2 lizzie

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Posted 03 November 2008 - 09:19 AM

Hi Susannah , so glad that you have found your way back. That's great news re the GAVE treatment- it sounds to have transformed your life.

Lizzie

#3 Shelley Ensz

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Posted 03 November 2008 - 10:12 AM

Hi Susannah,

It's delightful to have you back with us again. And I'm thrilled that your newest GAVE treatment for Watermelon Stomach has been such a success. That is wonderful!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Snowbird

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Posted 03 November 2008 - 12:18 PM

Hi Susannah

Welcome back...sure sounds like you've been through the mill and I'm so glad you've had success with your GAVE treatments and have more energy! I'm very happy for you! :) :)
Sending good wishes your way!

#5 janey

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Posted 03 November 2008 - 04:13 PM

Susannah,
WOW - you've really been through the ringer the last 18 months! I'm thrilled to read that it was well worth it. Having more energy sure adds a lot of quality to one's life.

Welcome back!

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#6 epasen

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Posted 03 November 2008 - 05:42 PM

Susannah, that sounds just great! I'm so happy for you. Thank you for shearing your experiences with us.
Emmi

#7 nan

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Posted 04 November 2008 - 02:34 AM

Susannah,

That's awesome news! I too have GAVE. I have only had two major bleeds in 4 years. My last argon treatment was June 18, 2007. I haven't heard of that procedure here. I am going to a GI doctor at Hopkins on New Year's Eve to try to get some help regarding motility and GERD.

I am so happy for you. You will feel like a different person if you aren't bleeding all the time.

Nan

#8 Gidget

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Posted 04 November 2008 - 02:40 PM

Susannah,
I am glad that you found something that works. I hope it will also work for others that have watermellon stomach as I know that it is very draining and painful. Regards, Gidget

#9 Nina

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Posted 06 November 2008 - 02:36 PM

Hi Susannah ~ I too have watermelon stomach (GAVE). I've never heard of the procedure that you mentioned. Sounds like it did the trick for you and that's wonderful. I've had a section of my stomach removed (the section that was bleeding), after 4 argon treatments and many, many transfusions. Right now I'm told that there is a small spot, near my esophagas, that is still bleeding. I was scheduled for yet another procedure (endoscopy) tomorrow, but could not arrange transportation and had to cancel. I'm not feeling real positive at the moment as my gastro. doctor said the only other thing he knows to do is remove the entire stomach. I can't begin to imagine what you do without a stomach....
I will have to talk about this procedure that you had and see what they know about it. But I believe my problem is more difficult because of the location of the bleed. Do you know if there is anything online regarding your procedure? I'll have to check that out. So glad the you posted, now I have something to at least think about.
I hope that you have continued energy and vigor ~ how wonderful for you. Keep up the good work!
Much love,
Nina (DE)

#10 Susannah

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Posted 10 November 2008 - 01:00 AM

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