Waiting for diagnosis—how to cope w/ early satiety?
Hi everyone, I originally posted in the support group but I figured a new thread might be a better idea. I am so relieved to see this forum and know that I'm not alone, after a year of googling my symptoms and feeling utterly crazy…Can't believe how tricky GI diagnoses are, for us all to be in the same boat.
A bit about me—I'm a 21 y/o female college student. A year and a half ago while living in southeast Asia I developed stomach pain. I called it "pain," what it really was was fullness/pressure that I'd never experienced in my life and began to notice lack of appetite. I've always had bloating and pain and diarrhea after eating, since I was a little girl, but assumed it's because I'm lactose intolerant/sensitive stomach and never really thought much about it. That was in fall 2014. Moved back home that winter.
Flash forward spring 2015. Stomach pain worsens and I start to notice fatigue. That is normal I figure, I have anemia and low blood pressure and I'm a stressed university student, right? So I don't think much of it. That summer 2015 the pain is becoming unbearable and my appetite starts to dwindle even more. I finally drag myself to GP because my partner is yelling at me that I have parasites from Asia. Fine. So they put me on a scale at the doctor and it says 123 lbs. I was surprised, having been 135 or so the month before! But again, thought little of it, assumed I was simply eating better and this was a healthy kind of weight loss.
My GP didn't think so. She ordered stool cultures, CBC, full ultrasounds (pelvic, abdominal) etc. All normal, of course. I come back in July 2015 (3 weeks later). I'm 118 lbs. She is alarmed, puts me on omeprazole and refers me to a GI, thinking I have stomach ulcers.
At this point, it's late summer and early fall 2015, I'm starting to get a little frustrated and skeptical. I'm kind of the opposite of a hypochondriac—I always think I can cure myself at home, that doctors are out to make money etc. So I throw that little referral in the back of my desk, choosing instead of focus on my studies.
But I'm not feeling better with the diet and med changes. I cut out dairy, alcohol, soda, carbonation, caffeine completely. It helps for a time, long enough that I can finish my fall semester. That was 3 months ago—October 2015. I finally dig that referral out and beg for the next GI appointment available with my insurance (I have horrible insurance…) They say I'm in luck to see one of the top GIs before the year ends (a bit of a drive, but worth it).
So I see him in November 2015. He's alarmed by my weight loss as well, puts me on carafate, and immediately sends me for thyroid and celiac panel+bloodwork and an upper GI series with small bowel follow-through. I'm really confused at this point, thinking he's nuts—it's my stomach, not my intestines, right?! Bloodwork comes back fine. I go in for the x-rays (that barium solution is hell!!) The tech finds nothing in stomach, to my frustration, then double takes at the screen during the small bowel follow-through. He pushes on lower right abdomen and asks "does that hurt?" Well, yeah, I told him. It always hurts. But I thought that was normal. He gives me a look and cleans me up.
Flash forward to early December—I'm traveling abroad to visit family, and symptoms are taking an absolute nosedive with severe fatigue. That's when I receive multiple calls from the GI office, telling me I urgently need to take a capsule endo before my next follow-up with GI. I check my x-ray results, though I have no idea what they mean:
"The distal ileal loops are distended and there is an increased number of folds demonstrated in the distal ileum. The terminal ileum is normal in appearance. Contrast reaches the colon by about 45 minutes.
IMPRESSION:
Distended distal ileal loops with increased number of folds. This finding can be seen in malabsorption syndromes such as celiac disease."
Well, as I said, I already tested negative for celiac, so that can't be it. At this point I finally start to believe that my GI knows what he's doing—with the x-ray they had finally found SOMETHING. I do some googling because my next follow-up isn't until new year. That's when I start to connect the dots, but I'm still a bit in denial at that point.
I go in for the pill cam before Christmas Eve 2015 and am disappointed, but not surprised, when that test GI finds everything "relatively normal." My main GI clarifies that this means nothing life-threatening, so now he can start to narrow down the diagnosis.
And that's when everything got 100x even worse. The past few weeks have been me crying in bed, low grade fevers, forcing myself to drink even 800 calories a day in smoothies, Ensure, gatorade, etc. That is by FAR my most severe symptom—what I now learned is called "early satiety." I often have this severe hunger pain, as if my body realizes it's starving…so I go to eat a bite of food, and then I cannot possibly eat anymore. At this point I finally put the last puzzle piece in and wonder if this could be IBD?
So finally the day arrives for my follow-up with the GI — Jan 8th 2016 (last Friday). I went in looking like death on legs and utterly desperate to get back to my normal life. I weighed in at 110 lbs (25 pound weight loss since late July). After reading some of your stories, I am so thankful I have a team who takes my symptoms seriously and seems committed to investigating the diagnosis, but I am still so frustrated that this has become my life!! GI prescribed me "IBS meds" (Levsin) but wasn't able to schedule my Colonoscopy/Endoscopy until late Feb.
So I have to live with this debilitating starvation and fatigue for 2 months, unless the IBS meds miraculously work. He admitted they probably won't—IBS doesn't cause weight loss as I've experienced. But he doesn't want to rush into more "harmful" treatment. I think I know what he means by that—some type of IBD meds. Steroids, Immunosuppressants etc. I understand the process, and am grateful for his caution. But I am so frustrated with my own body in the meanwhile!! I can barely function, let alone go to work and school, I've already drastically had to cut down my activities and my relationships are being affected by this stupid illness.
So, I guess that's the gist of my experience so far. If you have any tips or advice about the upcoming Colonoscopy/EGD, or how to eat in the meanwhile, I would so appreciate it. If nothing comes of those scopes, I don't know what I'll do, to be honest. I'm starting to get depressed about the whole thing. I just feel sick. Just…completely, utterly sick to the bone
Hi everyone, I originally posted in the support group but I figured a new thread might be a better idea. I am so relieved to see this forum and know that I'm not alone, after a year of googling my symptoms and feeling utterly crazy…Can't believe how tricky GI diagnoses are, for us all to be in the same boat.
A bit about me—I'm a 21 y/o female college student. A year and a half ago while living in southeast Asia I developed stomach pain. I called it "pain," what it really was was fullness/pressure that I'd never experienced in my life and began to notice lack of appetite. I've always had bloating and pain and diarrhea after eating, since I was a little girl, but assumed it's because I'm lactose intolerant/sensitive stomach and never really thought much about it. That was in fall 2014. Moved back home that winter.
Flash forward spring 2015. Stomach pain worsens and I start to notice fatigue. That is normal I figure, I have anemia and low blood pressure and I'm a stressed university student, right? So I don't think much of it. That summer 2015 the pain is becoming unbearable and my appetite starts to dwindle even more. I finally drag myself to GP because my partner is yelling at me that I have parasites from Asia. Fine. So they put me on a scale at the doctor and it says 123 lbs. I was surprised, having been 135 or so the month before! But again, thought little of it, assumed I was simply eating better and this was a healthy kind of weight loss.
My GP didn't think so. She ordered stool cultures, CBC, full ultrasounds (pelvic, abdominal) etc. All normal, of course. I come back in July 2015 (3 weeks later). I'm 118 lbs. She is alarmed, puts me on omeprazole and refers me to a GI, thinking I have stomach ulcers.
At this point, it's late summer and early fall 2015, I'm starting to get a little frustrated and skeptical. I'm kind of the opposite of a hypochondriac—I always think I can cure myself at home, that doctors are out to make money etc. So I throw that little referral in the back of my desk, choosing instead of focus on my studies.
But I'm not feeling better with the diet and med changes. I cut out dairy, alcohol, soda, carbonation, caffeine completely. It helps for a time, long enough that I can finish my fall semester. That was 3 months ago—October 2015. I finally dig that referral out and beg for the next GI appointment available with my insurance (I have horrible insurance…) They say I'm in luck to see one of the top GIs before the year ends (a bit of a drive, but worth it).
So I see him in November 2015. He's alarmed by my weight loss as well, puts me on carafate, and immediately sends me for thyroid and celiac panel+bloodwork and an upper GI series with small bowel follow-through. I'm really confused at this point, thinking he's nuts—it's my stomach, not my intestines, right?! Bloodwork comes back fine. I go in for the x-rays (that barium solution is hell!!) The tech finds nothing in stomach, to my frustration, then double takes at the screen during the small bowel follow-through. He pushes on lower right abdomen and asks "does that hurt?" Well, yeah, I told him. It always hurts. But I thought that was normal. He gives me a look and cleans me up.
Flash forward to early December—I'm traveling abroad to visit family, and symptoms are taking an absolute nosedive with severe fatigue. That's when I receive multiple calls from the GI office, telling me I urgently need to take a capsule endo before my next follow-up with GI. I check my x-ray results, though I have no idea what they mean:
"The distal ileal loops are distended and there is an increased number of folds demonstrated in the distal ileum. The terminal ileum is normal in appearance. Contrast reaches the colon by about 45 minutes.
IMPRESSION:
Distended distal ileal loops with increased number of folds. This finding can be seen in malabsorption syndromes such as celiac disease."
Well, as I said, I already tested negative for celiac, so that can't be it. At this point I finally start to believe that my GI knows what he's doing—with the x-ray they had finally found SOMETHING. I do some googling because my next follow-up isn't until new year. That's when I start to connect the dots, but I'm still a bit in denial at that point.
I go in for the pill cam before Christmas Eve 2015 and am disappointed, but not surprised, when that test GI finds everything "relatively normal." My main GI clarifies that this means nothing life-threatening, so now he can start to narrow down the diagnosis.
And that's when everything got 100x even worse. The past few weeks have been me crying in bed, low grade fevers, forcing myself to drink even 800 calories a day in smoothies, Ensure, gatorade, etc. That is by FAR my most severe symptom—what I now learned is called "early satiety." I often have this severe hunger pain, as if my body realizes it's starving…so I go to eat a bite of food, and then I cannot possibly eat anymore. At this point I finally put the last puzzle piece in and wonder if this could be IBD?
So finally the day arrives for my follow-up with the GI — Jan 8th 2016 (last Friday). I went in looking like death on legs and utterly desperate to get back to my normal life. I weighed in at 110 lbs (25 pound weight loss since late July). After reading some of your stories, I am so thankful I have a team who takes my symptoms seriously and seems committed to investigating the diagnosis, but I am still so frustrated that this has become my life!! GI prescribed me "IBS meds" (Levsin) but wasn't able to schedule my Colonoscopy/Endoscopy until late Feb.
So I have to live with this debilitating starvation and fatigue for 2 months, unless the IBS meds miraculously work. He admitted they probably won't—IBS doesn't cause weight loss as I've experienced. But he doesn't want to rush into more "harmful" treatment. I think I know what he means by that—some type of IBD meds. Steroids, Immunosuppressants etc. I understand the process, and am grateful for his caution. But I am so frustrated with my own body in the meanwhile!! I can barely function, let alone go to work and school, I've already drastically had to cut down my activities and my relationships are being affected by this stupid illness.
So, I guess that's the gist of my experience so far. If you have any tips or advice about the upcoming Colonoscopy/EGD, or how to eat in the meanwhile, I would so appreciate it. If nothing comes of those scopes, I don't know what I'll do, to be honest. I'm starting to get depressed about the whole thing. I just feel sick. Just…completely, utterly sick to the bone
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