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Gastric Bleeding- Does It Ever Stop?


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#1 Wendy

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Posted 26 May 2007 - 05:59 PM

Hi,

Thank you those who welcomed me after my first post. This time I am posting a question. Does anyone have long term experience of gastric bleeding as a sclero symptom? I have had numerous argon laser treatments over the past two years but everyone time I go back to the hospital for a check up endoscopy I have to have more treatment. I would imagine the floor of my stomach is a mass of scar tissue by now. Do you ever get to the point where you don't need further treatment? Is there any long-term problems caused by the repeated cauterisations? And are there any drugs that would help in some way?

It seems I have to have the treatments because the bleeding causes severe anaemia despite iron injections and pills but it would be nice to know there is an endpoint or some other options.

Wendy

#2 WestCoast1

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Posted 27 May 2007 - 04:40 AM

Wendy,

That is a great question. I am very interested to see what others have to say on this subject.
*WestCoast*

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#3 jefa

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Posted 27 May 2007 - 06:45 AM

I have no personal experience with gastric bleeding, though there are a several members who have had such problems. I am sure they will join in the discussion. It is a three day holiday weekend, so there may not be too many people around, but be patient. In the meantime, you may find some useful information in our page on Gastric Antral Vascular Ectasia (GAVE), commonly known as Watermelon Stomach. There are some patient/caregiver stories at the bottom of the page which may help you, as well.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 barefut

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Posted 27 May 2007 - 10:15 AM

Wendy,

I recently met another woman in my town who also has diffuse sclero and told me about her gastric bleeding problems. She said she doesn't have much of a stomach left!

I asked her if she ever visited this site but she has not. I can give her a call and encourage her join as I think she would be a very helpful person to many people here.

If nothing else I can at least ask her your questions and relay her answers to you.

#5 nan

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Posted 27 May 2007 - 10:18 AM

Hi,

I am a fellow bleeder. I too have watermelon stomach technically known as Gastric Antral Vascular Ectasia. It was discovered before I knew I had scleroderma. I had a major GI bleed in October of 2004. When I was scoped my GI doctor diagnosis me with watermelon stomach. I was put on iron until February 2006. I was so constipated at that point and my hemoglobin was 14 so the GI doctor took me off of iron.

Oh, I forgot to say that when the GI doctor went in in 2004 he didn't cauterize the lesions because I wasn't actively bleeding. He told me if I ever bled that heavily again he would have to cauterize. This past month I had another bleed and was cauterized He told me that I have to have it done indefinitely every 4-6 weeks. I am on iron again and my last hemoglobin level was 11. I feel very fortunate that I went for almost 2 and 1/2 years without a major bleed. The way I understand it is that these vessels bleed spontaneously and the only cure is to take out that part of your stomach. I am not sure how much they can cauterize you. I do know that I met a person on this site that is cauterized monthly and her hemoglobin hasn't been above 8 for a whole year. I hate to be negative, but I don't think there will be an endpoint. I am so sorry that you are having to suffer so much. Hang in there and I send good vibes your way. Might I ask you what kind of scleroderma you have? I have CREST (limited scleroderma), Sjogren's, and Fibroymyalgia.

Nan

#6 WestCoast1

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Posted 27 May 2007 - 11:39 AM

Hello Nan,

I was wondering if it was at all painful to have the stomach cauterized? Also, did you become constipated from the IV Iron treatment, or the Iron pills?

Thanks~
*WestCoast*

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#7 nan

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Posted 27 May 2007 - 01:17 PM

Erin,

I became constipated with the iron pill. The cauterization itself wasn't painful. The after pain wasn't any worse than menstrual cramps I used to have. It really isn't too bad. Do you also have watermelon stomach?

Nan

#8 Wendy

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Posted 27 May 2007 - 01:41 PM

Hi,
Thanks everyone for our replies and support. To answer some of your questions:

1. My diagnosis is limited systemic scleroderma. At this stage I have typical shiny, swollen sausage fingers and toes with little movement left in my first joints, some calcium nodules on my fingers, Raynauds, the gastric bleeding, pronounced fatigue and various itches and pigmentation marks. I also have significant muscular weakness that may be caused/partly caused by another genetic condition which may or may not be related.

2. The stomach cauterisation is not directly painful in the sense the area burnt has few nerves but can be sore for several days afterwards while it is healing and pretty painful when gastric juices burn the wounds and when your stomach churns. I had acute gastrisitis after one session which was hugely painful. Taking losec to limit gastric juices for a while afterwards helps, as does avoiding all but small meals and rough food for about five days.

3. I have not found iron tablets constipating. I take Ferrugradumet tablets, which seem very good in this respect. Maybe I am just lucky. I do find the bleeding seems to make me a little loose anyway for some reason and I am also on some other tablets for my other condition that contain an artificial sugar that makes some people loose anyway. I also have a high vegetable and fruit diet because this is what I like eating and what makes me feel the best overall. But I do sympathise with those who have to deal with constipation. It can make you fell really yucky.

Thanks again, Wendy

#9 WestCoast1

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Posted 27 May 2007 - 01:42 PM

Well Nan, I truly don't know. My GI doctor can't seem to find where the bleeding is coming from. I have gone through an endoscopy and a barium swallow and it has shown everything but signs of bleeding.

How did you finally find out that you had watermelon stomach?

I will start my first Iron Infusion treatment on Wednesday, so I am a little aprehensive, but you seem to have made it through this with no side effects, so that makes me feel a whole lot better! :)
*WestCoast*

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#10 nan

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Posted 27 May 2007 - 04:40 PM

Erin,

Mine was discovered by upper endoscopy. On the xray my stomach looks like the outside of one of those watermelons that has lines on it. I wish you luck with your first iron treatment. I am sure you will do well.

Nan

#11 Wendy

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Posted 29 May 2007 - 02:56 PM

Erin,

My bleeding although bad was not picked up on my first endoscopy. I suspect it depends a bit on the skills of the person involved. These days there is technology involving swallowing a small camera that takes photos as it goes through your system which is used to pick up bleeding that doesn't show up by other means, such as endoscopy and colonoscopy. Maybe it would help in your case if they can't find the bleeding otherwise.

Wendy

#12 WestCoast1

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Posted 29 May 2007 - 03:35 PM

Hi Wendy,

That is good to know!!!

Right now, getting all of these I.V. Infusions seems like running a hose into a leaky pool! Wouldn't it be smarter to just fix the leak?

I hope that finding the cause or source is the doctors goal....guess we'll see.

I get an infusion tomorrow, so I will ask his thoughts are.

Thanks.
*WestCoast*

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