Two years later, after a routine endoscopy, I started to bleed from the dilated blood vessels in my weakened and damaged stomach lining. Now the doctors tell me I have watermelon stomach, a condition where the blood vessels burst and bleed and I become very anemic.
The first time this happened I required four units of blood and then another two before the specialist cauterized the bleeders. That was in January 2004. Since then I have had two more endoscopies with cauterization.
My doctor says I am a mystery.
I cannot find a support group.
What is my future prognosis? Can it lead to other problems and is this condition aggravated by stress? If anyone has some answers for me I would love to hear from them.
Since posting my story here, people have been writing to me about watermelon stomach or GAVE. Many people suffered for months before diagnosis and some still require transfusions, iron injections, several laser treatments during endoscopies and more testing. The sad part of it all, little can be done for GAVE and some people have had to stop working because of the effort it requires to do things, and even to think or to concentrate. Constantly being anemic takes the fun out of life.
Since November, I too have been off work trying to build my body's iron supply so that I have some stored in my bone marrow as well as take in enough for the days supply for my red blood cells to carry. My ferritin is well below the normal range of 12-150. My hemoglobin slowly rose to 119 (11.9) two weeks ago from 85 (8.5) in October. However, I have had two treatments since October, one thermo coagulation and one plasma laser treatment. This week my hemoglobin is dropping again even though I have been taking iron tablets and watching what I eat or drink.
My new specialist insists that the H-pylori had nothing to do with the damage to my stomach lining. He also said that the bloating and the pain and discomfort can't be from the bleeding, and that stress and anxiety did not play a part in the bleeding but would make me experience more pain and make it difficult for my stomach lining to heal. I am more confused then ever as my gut tells me pressures and anxieties increases pain from the additional acid. Otherwise why would I be taking Pariet and Sucrafate which are acid inhibitors and protectors?
On February 15th another plasma laser treatment is scheduled and a biopsy will be taken from my duodenum to determine if any iron is being absorbed.
To those of you wanting to monitor your hemoglobin, get your doctor to give you a standing order for a weekly blood test and have the doctor's office phone you.
Please keep the emails coming. It is so encouraging to know that others out there are experiencing some of the same frustrations as I am. My saving grace is that in Canada we have an excellent health care system where I do not have to pay for anything except for prescriptions.
I have not written for quite some time, but I continue to get emails from other GAVE sufferers. Their stories are so much like the rest of you who have a written to me in the past.
So far I am managing my GAVE problem by monitoring my CBC on a regular basis. When I notice that there is a monthly decline and before I can actually feel it, I see my GP and say lets do something about it. My GI specialist agrees that my monitoring has saved me from serious episodes. I go to him for an argon plasma laser treatment about once a year, get the pictures and see if there is any changes to the streaks of red vessels. I take 60 mg of iron daily with another 30 mg every other day.
I am at a stable condition according to the GI specialist. I was able to travel overseas to France in 2006, and I am going to the United States for three months for this winter even though I have to have a treatment prior to departure.
I don't believe we have to be imprisoned by this largely unknown stomach ailment. If we can control it then we can enjoy life to the fullest.
Email: [email protected]
Story edited 11-01-04
Story posted 11-03-04 SLE
Story update posted 01-25-05 SLE
Story update edited 12-04-07 JTD
Story update posted 01-14-08 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: