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GAVE Treatment and Recovery


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11 replies to this topic

#1 rlbrussell

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Posted 07 August 2008 - 05:43 PM

Hi Everyone,

I have a question for those of you with GAVE. I recently underwent laser therapy because I started to actively bleed again. I was stable for 18 months. The recovery has been horrible. I have had so much pain in my stomach and heartburn that is unbearable. I am 10 days out now and starting to do a little better, but I was wondering what others have experienced. They need to go back in a few weeks but my recovery has been so painful that I told the doctor I was considering bleeding to death as an alternative to undergoing the endoscopy procedure again.

Rosa
Rosa
Diffuse Sclero
dx Jan 2006

#2 barefut

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Posted 07 August 2008 - 07:35 PM

Hi Rosa,

Man, I am so sorry you are having so much trouble with your poor tummy :( I don't have any experience with GAVE but wanted to say welcome back to the forums and let you know I'm sending you healing wishes to feel better SOON!

I'm sure someone who has experienced your pain will chime in soon. Hang in there!

#3 Cheryle

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Posted 08 August 2008 - 03:09 AM

Rosa,
I'm sorry to hear what a struggle you are going through. I'm glad you feel a bit better at the 10 day point, I hope each passing day you will feel more and more relief.
Cheryle

#4 nan

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Posted 08 August 2008 - 03:46 AM

Rosa,
I have GAVE and have had two major bleeds. The first time by the time he did an endoscopy I had stopped bleeding so he didn't treat it. The second time he had to treat because I was really bleeding. I had a treatment done in May then again in June. I remember feeling horrible for quite awhile. I have horrible nausea and heartburn daily so that might be why I didn't feel too badly. I do remember feeling pretty yucky for about ten days. Hopefully, your pain will soon go away. I am so sorry you are going through this. Please take care of yourself. Feel free to email or pm me if you'd like.
Nan

#5 Peggy

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Posted 08 August 2008 - 05:49 AM

I just wanted to send my good thoughts your way. I'm sorry you are having to battle such pain and heartburn. I have the reflux issues and have had really painful flare-ups with the acid reflux so if you are battling heartburn all of the time it must get really old. Would maybe taking nexium or aciphex or some type of liquid prescription stop or help this? I'm on a number of them and I haven't had a flare-up for quite a while. The gastro that I see I think did a great job of stabalizing my acid problem with the meds that he has me on and when I take them.

Again, I'm sorry you are in such distress. I hope you get to feeling better soon.

Warm hugs,

Peggy

#6 smac0719

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Posted 09 August 2008 - 12:02 PM

Hi Rosa. I have GAVE, but have not had to undergo any treatment for it yet. I hate to hear that you are in so much discomfort and hope you start feeling better soon.
I may have Scleroderma, but Scleroderma doesn't have me!

#7 Nina

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Posted 10 August 2008 - 03:29 PM

Hi Rosa ~ I too have GAVE, not sure if you have seen my posts regarding my treatment. Unfortunately, I have many (4 or 5) endoscopys along with "argon laser treatments" on all the blood vessels that were bleeding. I remember a day or two of pain and general fatigue, but 10 days sounds a bit much. Is it the gas that is causing pain? That's what mine was, I'm thinking maybe it is just taking longer to get out of your stomach.
My bleed was slow ~ my hemo would drop as low as 6 before anything was done. This was over a seven year period. Finally, this past January, a surgeon suggested that the part of my stomach that was bleeding be removed. It is my understanding that this is an extremely rare disease.
Please don't ever ignor your symptoms, it really is not worth it. If you have to have the endoscopy, have it, but tell the doctor about your problems, maybe there is something he could suggest. Maybe even try a different doctor. Ten days just sounds like a long time to have that much pain.
I do hope you are feeling a little better now ~ keep in touch and do tell your doctor about the pain.
Much love,
Nina

#8 rlbrussell

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Posted 14 August 2008 - 05:13 AM

Thanks for all the encouragement. I am feeling much better, finally! The doctors think the complications were related to poor wound healing. They were very aggressive with the laser and covered a large portion of my stomach. I need to get a cbc this week and hopefully everything is moving in the right direction.

Rosa
Rosa
Diffuse Sclero
dx Jan 2006

#9 jefa

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Posted 14 August 2008 - 06:11 AM

Rosa, I am so glad things are starting to look up with your stomach problems. Keep us posted on your CBC results. Hugs to you.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
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International Scleroderma Network (ISN)

#10 Snowbird

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Posted 14 August 2008 - 10:30 AM

Hi Rosa

I'm a little late chiming in...sorry to hear what a nasty time you've had but really glad to hear things are getting a little easier for you now!
Sending good wishes your way!

#11 smac0719

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Posted 14 August 2008 - 02:54 PM

Hi Rosa. I'm glad to hear things are improving and you are feeling better.
I may have Scleroderma, but Scleroderma doesn't have me!

#12 janey

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Posted 14 August 2008 - 04:20 PM

Rosa,
I'm very glad to hear that you are doing better. Your first post wasn't too encouraging, so it's very good to hear that you've had a turn around. I hope you continue to heal and that you feel better and better every day.

Big Hugs,
Janey Willis
ISN Support Specialist
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International Scleroderma Network (ISN)