Inflammation and an undiagnosed condition: Any advice?

Steven Cox5 said: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.

Switch doctors? Please. A diagnosis like this should take maybe a week or two at most.

Did they actually give you a list of approved foods, or are you just eating whatever happens to be around? Have you cut out fried stuff yet?
From what I can tell, you're still in the acute phase—you really need to get that inflammation under control first.
Do you have any support at home—a partner or family members helping out?

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.

Steven Cox5 said: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.

Tell her—you have to do these things while you're still alive. Seriously.
Switch doctors immediately—get to the ER. Can you actually push for hospitalization once you're there? Just tell them you're dealing with daily bleeding.

You need corticosteroids and targeted therapy—and you should have started that process yesterday. Honestly, why wait?
In the meantime—maybe just Google some Crohn's-friendly diet options?

Steven Cox5, I don't know which city you're in, but you should have been hospitalized and put on proper medication ages ago.
I have no idea what's going on at that ER, but showing up that often in that condition only to be turned away is just plain awful.

I'll send you a DM.

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.

Steven Cox5 said: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.

There is no way anyone should be forced into new colonoscopies while in an acute flare. When I was in an acute state, I only had one partial colonoscopy performed just to confirm the diagnosis, and I didn't undergo a full colonoscopy until fifteen months later once I had reached a stable remission.

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).

If you manage to score some steroids on the black market, the move is to hit a relatively high dose initially to guarantee effectiveness during those first 7 to 14 days—we're talking 32mg daily. From there, you taper down based on how you're actually feeling, cutting the dose by 50% every two weeks, so you drop to 16mg, then 8mg daily, and eventually 8mg every other day. You might find yourself staying on that 16mg to 8mg range for several months if that's what it takes.

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.

Jesus Christ. My dear, I stumbled upon your posts entirely by accident.
I used to think I had it rough because I've been dealing with loose stools for months, but what you're going through is truly terrifying. Honestly, I feel ashamed even mentioning my own struggles now.
In any case, I want to wish you a lot of strength, and please let us know how everything turns out.

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.

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!

Hi everyone... I was wondering if anyone might be able to offer some advice or perspective. I’m currently going through testing because they suspect I might have Crohn's disease. Since December, I’ve been dealing with diarrhea several times a day for about a month and a half straight. During that first week, it was brutal—maybe 12 to 15 times a day—mostly just bloody mucus passing through... after that, it settled down to about 5 to 8 times daily. My doctor initially thought it was just a virus, but since it dragged on so long, I finally managed to see a gastroenterologist. My CRP was elevated, and my Calprotectin 500 was at 1599. I had to undergo a colonoscopy with biopsies at the 30 cm mark. The pathology results showed significant chronic inflammation at the beginning of the small intestine. Honestly, the colonoscopy was barely survivable... The doctor wants an MR enterography next, along with follow-up blood work and another Calprotectin 500 test. I ended up paying for the enterography privately at a clinic in Chicago, since getting it covered through the standard system here can be such a headache. Because more than a month passed between the colonoscopy and the enterography, things have calmed down somewhat—though I’m on a very strict diet right now. It’s mostly just broth, rice, plain chicken, potatoes, carrots, toast, and tea... plus I've been drinking Ensure, a vitamin shake my doctor recommended since I lost quite a bit of weight, which seems to have helped stabilize things. I’m still dealing with abdominal cramps and several urges to go every day, and my joints are aching terribly... plus, the moment I try to eat anything outside of my restricted list, the pain returns immediately, followed by watery stools and bloody mucus. Currently, my blood levels look okay, my Calprotectin 500 is down to 9, and I haven't had a bowel movement in a few days. The specialist in Chicago who read my enterography told me my intestines look great—he even mentioned my appendix looks in excellent shape—noting only that the start of the small intestine looks slightly narrowed and mildly inflamed. How much weight can I put on that interpretation, though? Considering I actually had my appendix removed a year and a half ago, so I don't even have one... Now I'm just waiting for my turn to see my regular gastroenterologist so he can review all these new results.
What I'm really wondering is... is it possible that I actually have Crohn's and I'm just in remission right now, causing my Calprotectin 500 to return to normal? Or does Calprotectin 500 stay elevated in Crohn's regardless of what phase the disease is in?
Sorry for the long post... thanks in advance for any help.

Steven Cox5 said: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!

Hey Steven Cox5, how are you doing? Hope you're holding up okay... reading your post, I honestly can't believe everything you've been through. It's pathetic how incompetent those doctors were, and even worse that they didn't seem to care enough to act faster before things got this bad. It's insane how long it takes them to get a diagnosis. Which hospital did you go to? Let us know so we stay far away from there... Best.

Hey there,

So here's the deal:

Whenever I’m sitting down or moving around—basically anything involving my left side—I get this bloating or pain right under my left rib. It gets to the point where it actually feels a bit nauseating sometimes. Plus, I can hear this gurgling sound coming from that part of my gut... most of the time when I'm sitting, it just feels like something is stuck right at that bend where the colon turns. Honestly, I feel way better if I'm just standing up or lying down. The weird thing is, the discomfort and those mild pains or gurgles aren't just localized to that one spot; they spread out toward where my stomach meets the middle of my left colon and even over to the right side.

I had an ultrasound done and everything looked fine, except for this one note:
suspected renal formation vessel in the splenic flexure area
My blood work came back totally normal too.
Two out of three stool samples were positive for occult blood on the fecal test.
But looking at my actual movements, everything seems normal to me—no visible blood or anything.

Since I'm still waiting on my colonoscopy and some other tests, does anyone have any idea what might be going on?

Thanks, and catch ya later.

mellowskipper52 said:Hey there,

So here's the deal:

Whenever I’m sitting down or moving around—basically anything involving my left side—I get this bloating or pain right under my left rib. It gets to the point where it actually feels a bit nauseating sometimes. Plus, I can hear this gurgling sound coming from that part of my gut... most of the time when I'm sitting, it just feels like something is stuck right at that bend where the colon turns. Honestly, I feel way better if I'm just standing up or lying down. The weird thing is, the discomfort and those mild pains or gurgles aren't just localized to that one spot; they spread out toward where my stomach meets the middle of my left colon and even over to the right side.

I had an ultrasound done and everything looked fine, except for this one note:
suspected renal formation vessel in the splenic flexure area
My blood work came back totally normal too.
Two out of three stool samples were positive for occult blood on the fecal test.
But looking at my actual movements, everything seems normal to me—no visible blood or anything.

Since I'm still waiting on my colonoscopy and some other tests, does anyone have any idea what might be going on?

Thanks, and catch ya later.

What are your iron and hemoglobin levels looking like? And are you scheduled for an endoscopy right away too?

mellowskipper said:What are your iron and hemoglobin levels looking like? And are you scheduled for an endoscopy right away too?

Everything came back totally normal—within the standard ranges and all that. My gastroscopy was fine too; the doctor mentioned there was just a tiny bit of redness on the lining, but nothing else worth worrying about.