Has anyone had to have a vagatomy or pyloroplasty?

[btkinga]

I have had ulcers for the past 13 years.  My first ulcer was when I was 17 and it was the size of a quarter.  Since then, I have been on different PPIs continuously, except when pregnant or nursing.  I have been hospitalized three times for gastric bleeds and was most recently hospitalized last Friday for 6 days after having severe belly and back pain along with black, tarry stool.  I knew that I was dealing with another ulcer but was shocked to learn that my cbc was 5.7.  I was admitted immediately and received 2 units of blood.  I had also had a significant weight loss in the past month with frequent vomitting.  I ignored the pain and just kept taking PPIs with Pepcid Complete (a note on that - too much calcium like that in pepcid complete can cause kidney stones, another unpleasant feeling).

On Saturday, they performed an upper endoscopy and discovered multiple (5+) bleeding ulcers.  I was referred to a surgeon who is insistant that I look to surgical options.  I have always tested negative to h-pylori and they have been unable to confim Zollinger-Ellison syndrome, although I am going to have an EUS (endoscopic ultrasound) in 2 weeks to look for gastronomas (acid-secreting tumors).  At only 30 years old, I am worried as to what a vagatomy and pyloroplasty mean for my quality of life but at the same time, I know that the severity of my bleeds were life-threatening and as I don't respond to PPIs, something has to be done.  The surgeon believes that this time round I had a micro-perferation in the lining of my stomach or small intestine, causing additional pain from irritation to my pancreas.  I was on a large amount of pain medication in the hospital (10 mg of morphine every 3 hours along with zofran 4 mg and benadryl for itching due to the pain meds).  I have to wait for the EUS for 2 weeks b/c my GI doctor is concerned that the larger/thicker scope used for this proceedure will irritate the ulcers and cause more bleeding.  I have to go weekly for CBCs to check my blood levels and they want me to have surgery by Christmas. I was wondering if anyone has experienced anything similiar?  My grandfather had to have 2/3 of his stomach removed in 1975 but that was before PPIs.  He was also a heavy smoker.  I stay away from all NSAIDS/aspirin along with alcohol and I definitely don't smoke.  I am a teacher and a single mom of three so I really need to get healthy.  The doctors tried to really drive in the point that if I had waited a few more days to go to the ER, I might have had respititory complications or even gone into cardiac arrest.

Any comments, suggestions, advice, etc. would be appreciated.  I have never had major surgery like this and am not looking forward to it.  My family and doctors all seem to feel that it is my only option.  I have tried every PPI available and am currently on 40 mg of protonix 2x/day (have been for 3 years).  

[btkinga]

Thank you so much for your response.  Just knowing that I am not the only one going through this is so helpful.  There have been so many times over the past few months when I really thought I was going crazy.  I was irritable and have had almost no patience.  This is really bad when you are a mother of three young children and a teacher.  It sometimes took everything I had just to get out of bed in the morning.  I think the doctors just thought it was depression and response to high levels of stress. While that could be part of it, knowing that my continually low hemaglobin levels have something to do with my mood and emotions makes me feel so much better.  I know that there is a light at the end of the tunnel and my children might someday soon have their mother back.  Thank you.  I am scared at the prospect of such invasive surgery but finally having a plan for recovery makes it so much more bearable.

Good luck with your mother.  I can definitely sympathize with her pain.  She is lucky to have you.

[Jaybay]

God bless you.  I can imagine just a bit of what you're going through as my mother is facing similar problems.  In her case, she has multiple AVMs (arterio-venous malformations) throughout her stomach and small intestines.  She's been bleeding slowly for years as these vessels give up and explode, but since March it's been ridiculous.  She has to be transfused with 2 to 3 units every couple of weeks - sometimes more often, sometimes a bit less.

I so wish I had some words of wisdom for you, but your story is helping me better deal with my mom's condition.  Somehow, someway, something can be done to help.  At least we all know how to recognize the symptoms when her hemoglobin gets dangerously low.  She actually goes crazy.  All logic is gone and she gets flat-out mean.  Her all-time worst hemoglobin was 5.2.  What a disaster.  Mom lashes out at everyone: family, doctors, nurses, orderlies, volunteers, janitors... anyone at hand.

On the surgical side, I can say that no surgery is exactly fun.  I've had too many to count over the years both abdominal and orthopedic.  Where the abdominal surgeries were concerned, I can say the best thing you can do afterward is to take it very easy on food.  Go very slowly from liquids to solids and consistently monitor your body's reaction.  Stock up on yogurt smoothies from the grocery store or make your own for the first week.  When the stomach and/ or intestines are surgically treated, it can take some time for normal peristalsis to resume.  Better to go slow than end up back in the hospital for pain management because your guts aren't ready to function yet.

Best of luck to you, and I'm hoping someone who has a similar issue will see your post.  You just can't be alone in this!  :-)