Large stomach ulcer, hemoglobin still lowto h

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Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted 4/19/2016 5:23 PM (GMT -6)   
Hi Everyone. You may remember that my endoscopy showed what my gastroenterologist called "a gigantic stomach ulcer." Well I've been taking iron for a few months and currently my body can just keep up with the blood loss. As of last Sunday my hemoglobin isn't rising. I see my internist tomorrow and have another endoscopy scheduled May 13. I hope my GE is gathering his thoughts on how to repair this.

I hate that I can't take any NSAIDS because they aggravate the ulcer. That leaves me with Tylenol, Tramadol, and Nucynta (narcotic that can make me itch), but I know that some of you don't even have 3 pain relievers from which to choose. If anyone else has experience with gastric ulcers and lupus, I'd like to hear from you. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted 4/20/2016 7:41 PM (GMT -6)   
Just the update from todays internist visit. I gave him all of my most recent lab results from my rheumy and infectious disease doc. He is doubling my oral iron tablets hoping it will start to raise my hemoglobin again and he said my stomach may not be able to absorb the iron until the ulcer heals. He will see me again after my next endoscopy May 13 and if the ulcer hasn't healed I will be given IV iron. At least there's a solution! Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 4/20/2016 10:13 PM (GMT -6)   
Yikes! Losing enough blood to make you low in iron sounds like a really, really bad ulcer. I hope they can gets things under control quickly so you can start feeling better.

I will have to read up on treatments for low iron so I can make more educated comments! Hang in there!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

cilly
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Date Joined Aug 2014
Total Posts : 1491
   Posted 4/21/2016 4:38 AM (GMT -6)   
Try presc iron pills and they are strong.You will be fine once they decide how to fix it.

Did they check you for H .pylori for reason of ulcer?

Hope they do in endoscopy.

Good luck !!
Cilly

PattyLatty
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Date Joined Mar 2006
Total Posts : 2607
   Posted 4/21/2016 9:55 AM (GMT -6)   
Make sure you don't have the h pylori bacteria which can cause an ulcer, and is treated with a combination of 3 antibiotics. Getting to the root of the problem, and healing the ulcer should help with your iron deficiency.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 4/22/2016 3:01 AM (GMT -6)   
Hi Ladies. My gastroenterologist took biopsies during my endoscopy and had them tested for H. Pylori and cancer and all tests were negative. Kinda wish it was Helicobacter cause it's relatively easy to treat. I've been on prescription iron for almost 3 months and all it's currently doing is keeping my hemoglobin at 10.0 which is better than 9.2, but we had hoped it would be higher by now. So doc put me on stronger prescription iron yesterday. My insurance didn't cover it because it's so unusual, but it wasn't outrageous- $38. Thank you so much for your replies. It's always nice to know y'all care. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 4/24/2016 12:49 PM (GMT -6)   
I am currently going through a similar situation, I had a endoscopy 6 weeks ago in which my gastro doc discovered I have a pretty good size gastric ulcer and thrush in my esophagus. I went for my follow up 2 weeks ago and told him I continue to have tremendous abdominal and esophageal pain. He told me it was protocol to redo the endoscopy when the pantoprozole is not providing any relief, especially in someone who is immunosuppressed because either the medicine has stopped working or what they thought (and biopsied before, that came back negative) could actually be cancer in regards to the ulcer. In regards to the thrush I have been on the flucananze so much over the last year or so my body has most likely become immune to that, and with being so immunosuppressed I just can't fight it. I am able to take Norco, but it does not help. I have my follow endoscopy this Tuesday.

Melissa

Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted 4/25/2016 11:58 AM (GMT -6)   
It's good to hear from you Melissa D. I've had esophageal thrush and they treated me with a swish and swallow anti-fungal solution. My endoscopy showed two erosions in my esophagus, but they're minor. I've been on pantoprazole for years for GERD, 40 mg twice a day, but now I need to often supplement with Tums. I don't get much abdominal pain, but I read that's not unusual. I have lots of nausea and take both Zofran and promethazine.

The microbiologist in me is saying that your body has not become immune to all your antifungals, but the fungi has become resistant to your antifungals. I don't know if your docs can come up with an antifungal that your fungus is sensitive to and also improves your symptoms. That's a tough one Melissa. I really want to know how your endoscopy goes so when you're up to it, please post okay? Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 4/25/2016 2:09 PM (GMT -6)   
I've been on both the swish and swallow and the oral tabs many times, especially this last year. It did clear the thrush in my mouth, just doesn't seem to be getting the esophagus. I'm in agreement with you, I'm sure my body is not resistant to all antifunals, just the ones I have been on so often. My son has a masters in microbiology as well, and I have quite a bit of understudy education, enough to understand the methodology anyway.

I've been on 40 mg, twice a day of the pantoprozole for awhile now, before that it was Prilosec for years. I've had GI problems for as long as I can remember, I mean as young as 5; so I'm used to this rat race, just gets tiring doesn't it?

I will for sure post an update after my endoscopy and let you know what the doc says. Thanks Butterflake!

Hugs,
Melissa
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 4/27/2016 1:40 PM (GMT -6)   
Well I had my endoscopy yesterday, it was mixed news, good and bad. Good being the ulcer is healing and thrush is gone. Bad being that my gastroparesis is getting worse, he just failed to discuss this with me 6 weeks ago, but yesterday it was very evident my stomach is not emptying and the medication to help is no longer assisting. So, more biopsies were done to test for infections and so forth and when they come back my Gi doc and I will discuss my options left for my stomach and how to treat the now apparent nerve damage in my esophagus as well (I have moderate to severe pain in my esophagus and abdomen).

I am relieved that the ulcer is clearing and there appears not to be any cancer trust me. I am also happy that the thrush is gone, I just wish for once that was the end of the story and I could move on....sigh 😔 But that's life with Lupus right?

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 4/29/2016 10:42 AM (GMT -6)   
Hi Melissa. I've finally come to accept that Lupus will always be a big part of my life. It would be nice if I could confidently say that someday I'll go into remission, but I'm not the optimist I once was. Although I do have "good" days and appreciate every single one!

I'm glad your ulcer shows signs of healing. I don't get much pain with mine, but I'm bleeding from somewhere and the docs generally agree it's my ulcer. I take anti-nausea meds daily and still vomit on special occasions (like yesterday). I frequently get bloating and gas, but the pain I get daily is from GERD. I'm so sorry that your gastroparesis is worsening and that you are having so much pain. You must feel miserable. I've read that gastric ulcer pain can refer to different areas of the abdomen and I do get some of that, but it's mild.

Thank you so much for posting your update. I'll let you know in 2 weeks how my endoscopy goes. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry
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