Connect
Stomach pain undiagnosed for 3.5 months
I’ve had a hiatal hernia, gerd, and Barrett’s esophagus for 12 years. I’m a 48 year old woman and a Kindergarten teacher, and avid exerciser. My symptoms have been managed by a daily PPI of 20 mg until March of last year. I got a bad stomach infection, was given quadruple therapy with 2 antibiotics and it cleared up immediately. (Wasn’t tested for anything) Following that incident I was sick for most of the year with various coughs and chest infections and was given tons of antibiotics and steroids. Plus I took a lot (probably almost daily) of Motrin for knee pain-which my Ortho dr told me to do. Come November of 2022 I got what felt like another stomach infection. Was given the same quadruple therapy (both times I was never tested for anything). I got extremely sick, vomiting and nausea. In and out of ER with various meds being shoved at me. Nothing helped. Finally GI dr decided to do a scope on me and told me to stop taking the quadruple therapy. As soon as I did the stomach pain was still there but the side effects stopped. Scope showed same previous symptoms-plus no h pylori and no celiac. Said I had gastritis. Told me to take a PpI 40 mg twice a day. It’s not helping. Told to take probiotics-caused excruciating pain so stopped. When I saw my gynecologist about a year ago she told me I had the lowest vitamin D she’s ever seen. Had me start taking a high dose and then we’ll taper. Besides that none of my GI drs have ever checked my vitamin D, B12, or magnesium levels. Stomach pain has not stopped. My stomach is pretty flat in am and by end of day it’s really bloated. Some days are worse than others with the inflammation I can feel and bloating. I’ve changed my lifestyle completely since beginning….no caffeine, no gluten, no sugar, no dairy, no citrus, no fried food. Eat the same things basically daily. 30 grams of fiber (I do poop daily- don’t have issues with constipation or diarrhea). I have an adjustable bed so I can sleep upright. I’m a side sleeper and haven’t since November-if I lay on my side for even a few seconds I get stinging cramping. I eat small meals every 4 hours. I’ve lost 10 pounds so far.
I’ve had a stomach CT scan and it says I have an umbilical hernia-however a recent dr said they don’t think so. I have a scar on my right side of stomach from pyloric stenosis as a baby and a big bulge above it that looks like a hernia….however I’ve had this for years. I can’t sit upright, I can’t wear any type of pants because of construction. I wear dresses daily. My stomach pain moves on a daily basis and is not consistent. Sometimes it’s under my breast bone-gerd. Sometimes it’s across my stomach about an inch above belly button which is along my scar line/hernia line. Sometimes it’s my whole stomach and I feel like I’ve been punched. This week shooting pains started happening from lower stomach shooting up, plus in my left breast.
My drs here are awful. No help at all. Don’t touch me, no exam, don’t test for stuff, just throw medicine at me. I live in FL and am going to Mayo Clinic in Jax in March. If this was anyone else-like my husband-they couldn’t live with the pain. I have a high pain tolerance but am miserable and it’s turned my life upside down. I keep a daily diary just in case. I’ve also never been asked to do an colonoscopy. Anyone else with a similar experience? Any ideas/suggestions?
Like
Helpful
HugInterested in more discussions like this? Go to the Digestive Health Support Group.
Connect
The only thing I can add is ibuprofen is very hard on the stomach, only take Tylenol for pain. No booze or soda. You got Barrett’s at a very early age. Have you been scoped every 3 years?
-
Like -
Helpful -
Hug
2 ReactionsYes with scope. Everything stays the same except stomach cells ARE changing. Since Nov no pain killers at all. I don’t drink alcohol.
-
Like -
Helpful -
Hug
3 ReactionsSoda is bad on the stomach too.
-
Like -
Helpful -
Hug
1 ReactionOh goodness melindanorman!!!!
I'm so sorry that you are having to deal with so many mystery illnesses & the pain. I can't help but think of myself & compare symptoms. I had esophageal cancer and after treatments Mayo / Rochester, MN removed most of my esophagus, rearranged my stomach (my stomach is no longer located horizonally (at an angle), the surgeon stretched it up and attached to the remaining esophagus. Works great for the most part. Learning how to eat, what to eat and how often was a bit of a learning curve.
With all that said: in the course of the surgery for some reason my diaphram had a small hernia in it. Did not give me problems at all at first. We all knew it was present but "if it's not broken, don't fix it. "
3 years later I am now once again going to Mayo to have that now expanded hernia repaired. When I over exert: walk too much (stomach muscles), eat too much, etc. It makes that diaphram / muscle very angry. My upper intestine protrudes up into my chest cavity via the hernia. Very very painful and like you the pain seems to move around. Middle of stomach, below the chest / sternum, rib cage both back & front. Sometimes the pain almost feels like my right kidney is screaming. So when I say: "I feel your pain. " I literally DO!!!
Makes no sense but......... if I put a warm pack on my stomach it seems to help. One would think it would make it worse. I'm sorry I cannot offer you much help nor answers. I'm at a loss for words regarding the fact that nobody ever bothered to even run any diagnostic tests!!! My blood tests all came back normal except showed slightly elevated white blood (infection), and very high inflammation but the blood does not say what is inflammed. I wish you luck with your on going search for answers and hopefully a diagnosis. I'm confident that Mayo will be your Godsend.
(p.s. beings I'm very aware of the amount of pain pills I need to take just to manage (tylenol 650mg & Oxycodone 5 mg), I also rely heavily on Lidocaine pain patches (4%).
Sorry I got a bit chatty with my response.
Good luck,
Lori
-
Like -
Helpful -
Hug
8 ReactionsI have the same problems after antibiotics! They really mess with stomach bacteria and it takes me at least 3 months of a strict diet before it gets back to somewhat normal. Sounds like you’ve had a lot of them. I also have an
umbilical hernia that was removed once and is now back and have a Linx device for the severe gerd I’ve had. It will take about 6 weeks of bad stomach issues after going off PPI’s from the rebound effects. Sounds like you’ve had a lot of meds. Once I got off all of them feel much better but there was a lot of suffering before it got better!
-
Like -
Helpful -
Hug
7 ReactionsPraying all works out for you.
-
Like -
Helpful -
Hug
4 ReactionsMy daughter was recently diagnosed with Mals. Have you looked into Mals? She is also having low chronic pain that we have no dilution to at this point.
-
Like -
Helpful -
Hug
2 ReactionsGod bless you I hope you're better soon do you have to take them very much Omeprazole or the equivalent
-
Like -
Helpful -
Hug
3 ReactionsVery sorry you are dealing with this. Prayers. Would be interested in knowing what you found. I too am wondering if I need to go to Mayo for gastric issues. Is one Mayo clinic known for specializing in gastric issues? Did you get referred in or make an appt? I hope you find an answer.
-
Like -
Helpful -
Hug
3 ReactionsMy wife is 58 years old. She has bad stomach pain. She has lost 70 pounds in last year. She's very weak and has a hard time eating, because it makes her sick and or makes her have more stomach pain. She can hardly get around by herself. So she's has fallen several times. She fractured her pelvis about 5 months ago. Recently fell and fractured her collar bone upper arm and tore her rotator cuff. So can't use left arm. She says stomach pain is worse than shoulder pain. Had CT scan of pelvis and stomach and scope last week. It ulcers were healed up, there's some scaring. But no answer on pain , nausea, rapid weight loss. She drinks soda but they said that is about the only calories she gets so let her have it. I'm scared I'm going to lose her. She has had a lot of health issues like hip replacement at 36 years old, back surgery, gallbladder removed and complications from that that about killed her. Yet always been a good caretaker of family and home. Now can't bathe herself or take care of house. That is hard on her too . I'm not the best help . Had my right lung removed in January 2021. I'm oxygen dependent. She ran herself into the ground taking care of me. I'm doing better now that I have to do more. I hope Mayo can help her. Sorry for going on so long. First time I commented on here. I'm sorry for your pain and you get better and answers.
-
Like -
Helpful -
Hug
3 Reactions