Hey. Just wanted to drop a note that I finally got a diagnosis. It's microscopic lymphocytic colitis. My colonoscopy looked normal, but once the biopsy results came back, they described half a page worth of inflammation stretching all the way from the terminal ileum down. Currently on Budesonide 3 x3 mg for 6 weeks, sticking to Modulen, some basmati rice, and fish broth—just water for me since meat upsets my stomach. Still feeling pretty rough, though. Had a massive bleed, but my OB/GYN managed to stop it with birth control. We'll see how things go; my GI mentioned maybe adding Imuran if this doesn't work. Just wanted to share that we finally have an answer!
Home ›
Steven Cox5 › Posts
Posts by Steven Cox5
15 posts shown.
I know Crohn's is a pretty weird, unpredictable beast, and I've been dealing with some random symptoms that are hard to pin down. Like, about an hour after eating, I get these super dry hands, greasy discharge, and I can't even pass gas without it being awful. It's gross. Modulen helped a little bit over the last two days, though—less pain.
On top of that, my thyroid is killing me because I've lost so much weight that they can't seem to nail down my Levothyroxine 100 mcg dose.
My specialist actually reached out privately to say he'll start me on a new therapy after the holidays, and then I've got a colonoscopy with biopsies scheduled around Jan 15th, maybe even Jan 5th.
You just can't get this kind of care anywhere else; these guys will do it right.
Just hoping I make it through until then.
On top of that, my thyroid is killing me because I've lost so much weight that they can't seem to nail down my Levothyroxine 100 mcg dose.
My specialist actually reached out privately to say he'll start me on a new therapy after the holidays, and then I've got a colonoscopy with biopsies scheduled around Jan 15th, maybe even Jan 5th.
You just can't get this kind of care anywhere else; these guys will do it right.
Just hoping I make it through until then.
My doctor in San Diego says it's Crohn's, claiming they saw some dilated loops in my intestines on the ultrasound or whatever. Honestly, I have no clue how I managed to carry a healthy baby through all of this while dealing with that.
The capsule endoscopy showed terminal ileitis. My Calprotectin 500 is up, along with bile acids and serum amylase. The whole clinical picture screams Crohn's—terminal ileitis is basically just another name for Crohn's, though some international studies say about 10% of cases aren't actually Crohn's. Honestly, I don't have the time, the nerves, or the energy to deal with this pain and bleeding, let alone undergo another colonoscopy. If my hospital won't approve the treatment because the professor overseeing me is being difficult, I’m going private tomorrow. Otherwise, my mom will probably just let me buy my own Medrol and Imuran (since that's the next step after Pentasa), but I have no clue what the dosage schedule is. I don't get why they're making this such a struggle when everything is so obvious. Modulen and therapy. A human being isn't an animal meant to suffer like this. I know these meds have massive side effects, but I'm out of time and options. At this rate, I might as well just call the funeral home (being ironic, obviously).
That’s exactly my point: they need Medrol or Decortin and Imuran right now. But people act like it's nothing. How are you supposed to handle a colonoscopy and biopsies when your gut is already bleeding like this? And don't even get me started on the Moviprep prep. My clinical experience says otherwise—like, you guys might have MDs, but why won't you just let us doctors actually treat you? I told her straight up: we've been waiting a year and nobody is doing anything.
First, they kept me running in circles for a year. I’ve burned through about $6667 between private specialists, travel, and all those useless supplements, probiotics, and vitamins. Finally, the scan shows terminal ileitis, and now I'm stuck dealing with agonizing pain while trying to feed and change my 7-month-old. I was literally crying at the grocery store just trying to find food for her. And I'm just sitting here waiting... waiting... waiting. No private doctor will dare prescribe the actual therapy without a biopsy because it isn't "officially" Crohn's yet. By the time I get the colonoscopy results back from the pathologist, another 20 days will have passed. And how is my poor gut supposed to handle the prep? I can barely stand the bloating and pain, let alone a colonoscopy. If they don't start me on therapy by Friday, I'm hitting the ER and going straight to the hospital director if I have to. I'm not leaving until they give me what I need.
First, they kept me running in circles for a year. I’ve burned through about $6667 between private specialists, travel, and all those useless supplements, probiotics, and vitamins. Finally, the scan shows terminal ileitis, and now I'm stuck dealing with agonizing pain while trying to feed and change my 7-month-old. I was literally crying at the grocery store just trying to find food for her. And I'm just sitting here waiting... waiting... waiting. No private doctor will dare prescribe the actual therapy without a biopsy because it isn't "officially" Crohn's yet. By the time I get the colonoscopy results back from the pathologist, another 20 days will have passed. And how is my poor gut supposed to handle the prep? I can barely stand the bloating and pain, let alone a colonoscopy. If they don't start me on therapy by Friday, I'm hitting the ER and going straight to the hospital director if I have to. I'm not leaving until they give me what I need.
Just got my capsule results back. In medical speak—not gonna bore you by typing out the whole thing—it says follicular hyperplasia with denuded mucosa, which fits perfectly with a specific type of inflammatory bowel disease in the terminal ileum. Diagnosis: terminal ileitis (aka Crohn's). So, on top of my gut being wrecked and me ending up in the ER every other day because of the pain, now they want *another* colonoscopy with a biopsy of the terminal ileum just so some pathologist can officially confirm it's Crohn's.
They didn't even give me a diet plan. My private doctor gave me a brochure and told me to stick to Modulen until we get a final diagnosis (Modulen is $50 and lasts for 2 days). I called the place where I did the capsule to see if they could just give me some steroids or Imuran as first aid because I honestly can't deal with this anymore. My main doctor isn't available until January 7th. They just tell me, "If you feel bad, go to the ER" (so I go to the ER, they decide it’s not an acute emergency, toss me some Spasmex and painkillers, and tell me to follow up with my GI). I tried calling some doctors privately, but some won't see me until tomorrow or Saturday, and the hospital in my city said to come in Friday. (Fine, I guess I'll survive another two days).
Seriously, for God's sake—if the report says terminal ileitis and you see someone wasting away, bleeding, and hitting the ER constantly because of the pain, just give them the meds already. Why the extra torture? And why another colonoscopy and biopsy right now? Calm the inflammation down first, then do the scope. I'm exhausted, I'm hurting, I'm losing weight, and my baby doesn't care if I can physically handle things or not, but all these doctors just shrug their shoulders... like maybe I have to actually die before they'll help. As for my doctor, I'm speechless. Apparently, it's not even Crohn's until the pathologist signs off on it.
They didn't even give me a diet plan. My private doctor gave me a brochure and told me to stick to Modulen until we get a final diagnosis (Modulen is $50 and lasts for 2 days). I called the place where I did the capsule to see if they could just give me some steroids or Imuran as first aid because I honestly can't deal with this anymore. My main doctor isn't available until January 7th. They just tell me, "If you feel bad, go to the ER" (so I go to the ER, they decide it’s not an acute emergency, toss me some Spasmex and painkillers, and tell me to follow up with my GI). I tried calling some doctors privately, but some won't see me until tomorrow or Saturday, and the hospital in my city said to come in Friday. (Fine, I guess I'll survive another two days).
Seriously, for God's sake—if the report says terminal ileitis and you see someone wasting away, bleeding, and hitting the ER constantly because of the pain, just give them the meds already. Why the extra torture? And why another colonoscopy and biopsy right now? Calm the inflammation down first, then do the scope. I'm exhausted, I'm hurting, I'm losing weight, and my baby doesn't care if I can physically handle things or not, but all these doctors just shrug their shoulders... like maybe I have to actually die before they'll help. As for my doctor, I'm speechless. Apparently, it's not even Crohn's until the pathologist signs off on it.
Not 4 months, more like a year and 2 months of them playing me for a fool. I traveled all over the US and nothing worked until the capsule finally figured it out. 30 kg less bleeding and nobody believes you—all that struggle while dealing with a tiny baby.
They found Crohn's on the capsule
They ran some flora status tests for me through Proimmun, including testing for Candida, which came back negative. Sure, there might be some leaky gut stuff going on... but this kind of weight loss and food intolerance? It’s gotta be some sort of non-specific enteritis. The symptoms are mirroring Crohn's in the small intestine or even a small bowel tumor. A capsule endoscopy should clear things up either way.
Because losing weight like this and passing undigested food just isn't normal.
Because losing weight like this and passing undigested food just isn't normal.
Hey everyone,
Back here again because I’m honestly at a total loss. Since my last post three months ago, I’ve dropped 26 lbs (went from 194 down to 136). I'm dealing with bleeding after eating sweets—thick, dark blood mixed with mucus—plus greasy stools and undigested food. I went through a massive battery of tests; everything was up, including Calprotectin 500, amylase at 140, and urine at 1200 (normal is up to 400). Allergy testing showed a reaction to gluten and wheat, though Celiac was ruled out. My MR enterography looked fine, and now I'm just waiting on the results from a video capsule. They started me on Pentasa for immediate relief, which brought my Calprotectin down to 50 and normalized the amylase levels. But despite eating a ton, I’m still wasting away. Stools are heavy, and there's this constant pressure in my lower abdomen and around my anus. I can't even pass gas; I'm just constantly bloated. Colonoscopy and gastroscopy with biopsies came back clear, though they only took a biopsy at 15 cm during the colonoscopy, and my GI doc wouldn't take other biopsies even though it was noted in the report.
Basically, I'm visibly deteriorating and my whole family is devastated. I have a 7-month-old baby to think about. They've diagnosed me with malabsorption, but they have no idea why. No matter how much I eat, the weight keeps falling off. I'm feeling pain and changes around my anus too (not sure if it's fissures or something else), along with dizziness. I used to deal with nausea and vomiting, but Pentasa helped settle that. I'm exhausted all night long. It's hopeless because I don't know what's happening; my GI doesn't know where to send me next. The MR enterography didn't show Crohn or UC, so hopefully, this capsule is smart enough to find something.
The doctor listed Crohn's small bowel, non-specific enteritis, or protein and fat malabsorption deficiency.
There are at least 25 different causes for malabsorption according to the literature I've read.
I’m really begging for any insight or direction because I am clearly fading. People I run into—neighbors, coworkers, friends—are horrified by how I look, like some starving kid from a war zone.
So please, any thoughts or advice... is this Crohn's or something else?
Thanks so much.
Back here again because I’m honestly at a total loss. Since my last post three months ago, I’ve dropped 26 lbs (went from 194 down to 136). I'm dealing with bleeding after eating sweets—thick, dark blood mixed with mucus—plus greasy stools and undigested food. I went through a massive battery of tests; everything was up, including Calprotectin 500, amylase at 140, and urine at 1200 (normal is up to 400). Allergy testing showed a reaction to gluten and wheat, though Celiac was ruled out. My MR enterography looked fine, and now I'm just waiting on the results from a video capsule. They started me on Pentasa for immediate relief, which brought my Calprotectin down to 50 and normalized the amylase levels. But despite eating a ton, I’m still wasting away. Stools are heavy, and there's this constant pressure in my lower abdomen and around my anus. I can't even pass gas; I'm just constantly bloated. Colonoscopy and gastroscopy with biopsies came back clear, though they only took a biopsy at 15 cm during the colonoscopy, and my GI doc wouldn't take other biopsies even though it was noted in the report.
Basically, I'm visibly deteriorating and my whole family is devastated. I have a 7-month-old baby to think about. They've diagnosed me with malabsorption, but they have no idea why. No matter how much I eat, the weight keeps falling off. I'm feeling pain and changes around my anus too (not sure if it's fissures or something else), along with dizziness. I used to deal with nausea and vomiting, but Pentasa helped settle that. I'm exhausted all night long. It's hopeless because I don't know what's happening; my GI doesn't know where to send me next. The MR enterography didn't show Crohn or UC, so hopefully, this capsule is smart enough to find something.
The doctor listed Crohn's small bowel, non-specific enteritis, or protein and fat malabsorption deficiency.
There are at least 25 different causes for malabsorption according to the literature I've read.
I’m really begging for any insight or direction because I am clearly fading. People I run into—neighbors, coworkers, friends—are horrified by how I look, like some starving kid from a war zone.
So please, any thoughts or advice... is this Crohn's or something else?
Thanks so much.
First off, rule out anything infectious—bacteria, parasites, viruses, all of it. You’ve gotta look into colonoscopies and GI workups too. It could be anything from food allergies to some kind of gut dysfunction. Usually, stomach viruses don't drag on for more than about 15 days. Make sure to rule out celiac, Crohn's, ulcerative colitis, and microscopic colitis. Honestly, I'd recommend Dr. Vucelica over at the Amrusev clinic. The guy is a total pro. If you go through the hospital system, they'll glance at you for ten minutes and if they don't find anything immediately, they'll just try to send you to a psychiatrist. After dealing with diarrhea, fatty stools, and dropping 23 kg in just two months, I finally found someone who actually took me seriously.
Heading to the hospital. They’re looking into some kind of allergic enteropathy, just gotta prove what it actually is first. Thanks for all the advice, everyone. It's a malabsorption issue, but they aren't sure why yet. Targeted testing is on the table, along with a consultation at a nutrition center. That's how the pros handle it.
GI and the colonoscopy ruled out Crohn's, unless it's hiding in the small intestine. Just waiting on the capsule now, but it’s clearly food-related since I react to everything. Bleeding whenever I eat anything too heavy. Worst part? My little one is dealing with the exact same thing—all the inflammatory markers spike after eating. For me, we still have the capsule, an endoscopy, and an MR enterography to clear the small bowel, then we're out of options. My large intestine is inflamed, the duodenum is too, but the small intestine is still a question mark. When Calprotectin 500 is high, something is definitely going down. Looks like food just absolutely wrecked my gut. Maybe a dose of corticosteroids for a few days (whatever the specialist decides) will help.
Hey everyone, any GI specialists in the house?
I really need some help here because I’m feeling terrible and I have no idea what's going on. I've posted on the Crohn and IBS boards, but I still don't have a diagnosis. This has been going on for a year now—dealing with loose stools every single day and occasional bleeding, but doctors can't figure it out.
Keeping this brief: during my second month of pregnancy, I started noticing heavy, greasy stools. Then the abdominal pain kicked in, along with undigested food in my stool, vomiting, dizziness, and diarrhea. After my C-section, things actually got worse. My stools turned yellow or green, and basically everything I eat comes out completely undigested.
I lost 19 lbs in just two months. There's blood in my stool—thick, dark blood mixed with mucus after bowel movements (hemorrhoids have been ruled out). About two hours after eating, my hands get dry, my skin changes, and I deal with dizziness, nausea, and sometimes vomiting. I get this cramping in my groin like a muscle is seizing up, and I can't even pass gas. I'm constantly bloated. My OB/GYN even noted some unusual vaginal discharge/oiliness and was confused by it.
I went from 88 lbs down to 68 lbs in two months postpartum. It’s clearly a malabsorption issue or some massive reaction to food since everything flares up right after I eat.
We've done a ton of testing: Colonoscopy looked fine without biopsies (the GI doctor was supposed to take them but didn't, so I had to go private for an anorectal biopsy at 20 cm; still waiting on those results). Duodenal biopsy showed inflammatory changes in the lamina propria lymphocyte cells. Urinary amylase was 1400, serum was 200, but lipase was normal. Abdominal MRI showed a fatty liver, but everything else was okay. Small bowel transit was normal. Celiac is ruled out. Abdominal ultrasound was fine, and bloodwork (CBC, CMP, liver panel...) was mostly normal. On the bloodwork side, bile acids are high, ferritin is low, and amylase is elevated. Everything else seems okay. Calprotectin 500, fecal elastase is normal, chromogranin A is normal. They've ruled out any pathology related to the fatty liver. I react to absolutely all food, and even when I follow an intolerance diet, everything passes through undigested. Stool cultures and all other microbiology came back clear. The next steps suggested are a video capsule, small bowel enteroscopy with biopsy, and MR enterography. My doctor barely even examines me; they just read the results and are currently labeling me with Malabsorption syndrome and IBS (even though every medical paper says Calprotectin 500 is an inflammatory marker used to distinguish IBS from actual intestinal inflammation).
Bottom line, the problem is the food and how I'm absorbing it. It has to be somewhere between the duodenum and the small intestine.
Current meds: Ursodiol 2 x1, iron, B vitamins, and Levothyroxine 100 mcg (for hypothyroidism).
Please, if anyone has any thoughts or suggestions, let me know. I'm losing weight drastically, and I just want to be healthy for my 5-month-old baby girl—she’s an angel and sleeps most of the time.
I'm begging for help. Please, don't suggest a psychiatrist or psych meds. Between the bleeding, the rapid weight loss, the vomiting, and the constant nausea, this isn't "all in my head" given these lab results.
Thanks for any advice!
I really need some help here because I’m feeling terrible and I have no idea what's going on. I've posted on the Crohn and IBS boards, but I still don't have a diagnosis. This has been going on for a year now—dealing with loose stools every single day and occasional bleeding, but doctors can't figure it out.
Keeping this brief: during my second month of pregnancy, I started noticing heavy, greasy stools. Then the abdominal pain kicked in, along with undigested food in my stool, vomiting, dizziness, and diarrhea. After my C-section, things actually got worse. My stools turned yellow or green, and basically everything I eat comes out completely undigested.
I lost 19 lbs in just two months. There's blood in my stool—thick, dark blood mixed with mucus after bowel movements (hemorrhoids have been ruled out). About two hours after eating, my hands get dry, my skin changes, and I deal with dizziness, nausea, and sometimes vomiting. I get this cramping in my groin like a muscle is seizing up, and I can't even pass gas. I'm constantly bloated. My OB/GYN even noted some unusual vaginal discharge/oiliness and was confused by it.
I went from 88 lbs down to 68 lbs in two months postpartum. It’s clearly a malabsorption issue or some massive reaction to food since everything flares up right after I eat.
We've done a ton of testing: Colonoscopy looked fine without biopsies (the GI doctor was supposed to take them but didn't, so I had to go private for an anorectal biopsy at 20 cm; still waiting on those results). Duodenal biopsy showed inflammatory changes in the lamina propria lymphocyte cells. Urinary amylase was 1400, serum was 200, but lipase was normal. Abdominal MRI showed a fatty liver, but everything else was okay. Small bowel transit was normal. Celiac is ruled out. Abdominal ultrasound was fine, and bloodwork (CBC, CMP, liver panel...) was mostly normal. On the bloodwork side, bile acids are high, ferritin is low, and amylase is elevated. Everything else seems okay. Calprotectin 500, fecal elastase is normal, chromogranin A is normal. They've ruled out any pathology related to the fatty liver. I react to absolutely all food, and even when I follow an intolerance diet, everything passes through undigested. Stool cultures and all other microbiology came back clear. The next steps suggested are a video capsule, small bowel enteroscopy with biopsy, and MR enterography. My doctor barely even examines me; they just read the results and are currently labeling me with Malabsorption syndrome and IBS (even though every medical paper says Calprotectin 500 is an inflammatory marker used to distinguish IBS from actual intestinal inflammation).
Bottom line, the problem is the food and how I'm absorbing it. It has to be somewhere between the duodenum and the small intestine.
Current meds: Ursodiol 2 x1, iron, B vitamins, and Levothyroxine 100 mcg (for hypothyroidism).
Please, if anyone has any thoughts or suggestions, let me know. I'm losing weight drastically, and I just want to be healthy for my 5-month-old baby girl—she’s an angel and sleeps most of the time.
I'm begging for help. Please, don't suggest a psychiatrist or psych meds. Between the bleeding, the rapid weight loss, the vomiting, and the constant nausea, this isn't "all in my head" given these lab results.
Thanks for any advice!
Hey,
Does anyone remember the username of that doctor who was always popping in here to answer questions? I can't for the life of me recall it and I need it ASAP. It’s not Ante Dubrikante, not velvetmoose9, and not hrvoje.dr. I totally blanked on his handle even though he helped out all the time. If anyone remembers, please let me know quickly.
Thanks a ton
Does anyone remember the username of that doctor who was always popping in here to answer questions? I can't for the life of me recall it and I need it ASAP. It’s not Ante Dubrikante, not velvetmoose9, and not hrvoje.dr. I totally blanked on his handle even though he helped out all the time. If anyone remembers, please let me know quickly.
Thanks a ton