Does this sound at all like Crohn's to anyone? Please help

Hi everyone!

I'm new to posting here but in all the relentless research i've been in pursuit of lately, this website has come up frequently so I figured I'd give it a shot. I'm going to tell my story here in a nutshell, but i've been suffering for quite some time now.

I've been sick in mysterious ways for years now, but only in the last two months have my GI symptoms really progressed, which began my putsit of a diagnosis and here I unfortunately still stand. Beginning in elementary school I developed recurrent, unexplainable mouth sores, which my mother & I first believed were simple canker sores. (I'm 24 now) however, they progressively got worse in High School & then in college - at their worst I had 6 different lesions in my mouth that I could count. They only ever occur on my bottom gums and are only internal - no outer lip involvement ever. They are so stupidly painful preventing me from being able to eat, talk properly, sleep, etc. Nothing can explain why or when I get them because they're so sporadic. At age 16 I developed "bad knees" which were diagnosed as being joint problems chalked up to being cause be gymnastics, which I promptly quit. Although I had participated in gymnastics for years, I can't ever say I was an "athletic" child - I was not overly active. My neck has also always been a pain for me & since I was a child, I can't seem to put my head back without pain. Fast forward to when I first developed severe heart palpitations (Taychardia) in 2014, which eventually landed me getting an EKG, with no conclusive cardiac results. My general doctor said I was just too thin and should gain some necessary weight. Last summer my GI symptoms really took off running and my palpitations came back. I visited a cardiologist this time and got another EKG, an ECHO, a stress test & had to wear a 24-hour holter monitor - everything came out normal. Then my doctor sent me to my (excellent) GI who diagnosed me with GERD in September, & I started taking Omeprazole daily, which I still do. I saw him again in Feb, where we discussed my progressive symptoms of frequent diarrhea which sometimes is bloody, constipation (in the same sitting as diarrhea - I only say constipation to mean I don't always use the restroom every day, but every time I do it is loose and watery), hemorrhoids, pain in the lower right quadrant of stomach, floating stools, inability to absorb fats, and the list goes on. I can't "wait" to use the bathroom when I have to go - it's absolutely an emergent situation. So, in March, I got an upper endoscopy which was clear. At the beginning my doctor and I were looking for either Celiac or Crohn's and the former has been ruled out by upper- endoscopic biopsies. Then, this past Wednesday May the 3rd, I had a colonoscopy, which included biopsies all clear. Here's where I stand now..

We then moved on to the possibility of Crohn's and I just had a colonoscopy May the 3rd (this week), which showed no gross findings & my biopsies were negative. Although this might be good news to some; I am utterly & completely devastated. My GI dr said there was an 80% chance Crohn's would appear on my colonoscopy & obviously I seem to fal in the 20% category. I am so exhausted searching for an answer that I feel is within my reach but not yet met. I really, really, truly feel in my heart that I have Crohn's disease. A friend's son of mine has the disease & was recently diagnosed via Pillcam after both an upper endoscopy and colonoscopy were negative/normal (showing nothing). Let me ask, how common is this? In my relentless research that keeps me up with racing thoughts most nights I keep seeing patients say it took "years" to diagnose this disease because it is notorious for "skipping" or disappearing & then reappearing. I have been sick for years & suddenly it's getting worse & I feel i'm on a downward spiral. I've lost 3 lbs in 3 weeks approx. that, at 113 lbs to start, couldn't afford to lose to begin with. I'm 24 & am beyond exhausted with my eyes rolling back into my head at 9pm after doing nothing but going to my stress-free (really) desk job at while most people my age are out & about into the early hours of the morning. I can't even fathom I could have the energy to participate in that..

I feel as though I am currently in a flare right now with two serious mouth ulcers leaving me unable to eat anything except jello, yogurt shakes, mashed potatoes.. you get the deal. This is along with my GI symptoms (diarrhea, blood in stool, stomach pain in right quadrant, etc. same old). Is it possible to be in a flare & it STILL not show on a colonoscopy? Even a biopsy? I know the colonoscopy leaves feet & feet worth of unexplored territory in the small bowel, which Crohn's can occur in. The mouth sores is really what almost convinces me that is Crohn's. I have heard of no other disease or illness in conjunction with GI issues like the one's I describe that cause similar problems outside of Crohn's. UC was up in the air for a moment's time, however, I wasn't at all convinced because I've only seen Crohn's patients discuss oral ulceration on forums in my research, not those plagued by Colitis.

This makes me think the pillcam would really be my best option, which my doctor is going to schedule me for next.
Please, please if anyone out there has ANY source of information to lend to me, extend it my way. I am beyond desperate and feel tears on the surface of my eyes when I think about how long this is taking, how much I'm missing out on, etc. I feel going into the colonoscopy my dr & I were sure he'd find evidence of Crohn's & I feel he is discouraged for not only his professional sake, but for the sake of my well-being as well that he still could not provide a concrete diagnosis. I accept any & all testimonies or opinions you may have for me, especially if it is first-hand experience regarding a diagnosis of CD that sounds similar to my case.

I feel like I sound pretty text-book in regards to medical criteria, however, my doctor said rarely is any case a text-book one in the field of medicine, which points to the event nothing gross is showing on any of my tests thus far.

Thanks again to anyone who read all of this - it means everything to me.

When the diarrhea is bloody, is is bright red fresh blood or dark/black blood? Did the doctor see anything on the colonoscopy that could explain the bleeding - something like an anal fissure or internal hemorrhoids?

Have you had blood tests run? To check for anemia? To check CRP and ESR? To check electrolyte levels, B12 levels, folate levels, etc?

Do you have any family members or extended family with IBD?

Have you had a fecal calprotectin test done (stool test looking for calprotectin, which shows up with colon inflammation and to a lesser degree with small bowel inflammation)?

All of that should be done before a capsule endoscopy.

Also, before a capsule endoscopy, you should have a small bowel MRI or CT scan. The best version of this includes oral contrast drink plus IV contrast and is called an MR Enterography or CT enterography. It can give really good images of the small bowel. The reason this should be done before the capsule endoscopy is that if you do have Crohn's, there is a chance you could have a narrowing (stricture) in your small bowel. IF that were the case, and IF you did the capsule endoscopy, it could get stuck and you would need surgery to remove it. It's not likely, but it's not worth the risk. If small bowel Crohn's is suspected, the MRI or CT should be done before the capsule. The capsule is sort of a 'last resort' test if small bowel Crohn's is suspected but the MRI or CT scan comes back negative or inconclusive.

For what it's worth, most people with Crohn's do show something in their colon. But maybe 20% or so have ONLY small bowel disease, have clear colonoscopies and even clear biopsies of the colon. So it's possible.

That brings up another question: When they did the scope, were they able to enter the small bowel end (called the terminal ileum) and biopsy there?

beave said...
When the diarrhea is bloody, is is bright red fresh blood or dark/black blood? Did the doctor see anything on the colonoscopy that could explain the bleeding - something like an anal fissure or internal hemorrhoids?

Have you had blood tests run? To check for anemia? To check CRP and ESR? To check electrolyte levels, B12 levels, folate levels, etc?

Do you have any family members or extended family with IBD?

Have you had a fecal calprotectin test done (stool test looking for calprotectin, which shows up with colon inflammation and to a lesser degree with small bowel inflammation)?

All of that should be done before a capsule endoscopy.

Also, before a capsule endoscopy, you should have a small bowel MRI or CT scan. The best version of this includes oral contrast drink plus IV contrast and is called an MR Enterography or CT enterography. It can give really good images of the small bowel. The reason this should be done before the capsule endoscopy is that if you do have Crohn's, there is a chance you could have a narrowing (stricture) in your small bowel. IF that were the case, and IF you did the capsule endoscopy, it could get stuck and you would need surgery to remove it. It's not likely, but it's not worth the risk. If small bowel Crohn's is suspected, the MRI or CT should be done before the capsule. The capsule is sort of a 'last resort' test if small bowel Crohn's is suspected but the MRI or CT scan comes back negative or inconclusive.

For what it's worth, most people with Crohn's do show something in their colon. But maybe 20% or so have ONLY small bowel disease, have clear colonoscopies and even clear biopsies of the colon. So it's possible.

That brings up another question: When they did the scope, were they able to enter the small bowel end (called the terminal ileum) and biopsy there?

Hi & thank you for your reply,

When I experience diarrhea it is both red blood & dark blood - kind of like tar if that makes sense? I was diagnosed with hemorrhoids when I had my colonoscopy. Not sure if just internal, external or both - I was too drugged when he came back to see me, so I'll have to ask him that when I see him.

I have no family members with IBD, however; a grandmother does have other autoimmune diseases & I know they tend to show comorbidity. I didn't receive a blood panel that could suggest Crohn's because my GI feels they are widely inconclusive, however, all blood tests i've ever had in my life showed high WBC count and low b-12, which I know is common in Crohn's. When I had my first experience with heart palpitations my doctor immediately said I had to be anemic, which I wasn't severely but I may have been slightly.

I will have to look into the CT enterography - I know my GI mentioned this to me months ago, but when I alerted him about the bloody stools he scheduled me for a colonoscopy immediately & said that had to be performed first. Most of the ileum can't even be seen in a colonoscopy, I know, which makes me think I need the pillcam. My GU took two biopsies of only my colon, and unfortunately none of the little bit of my terminal ileum he could see. Gross images suggested it looked fine, but there's no biopsies of the area to rule out Crohn's. I kind of wish I could re-do the colonoscopy to get a biopsy of that area, but I know the pillcam is better at giving answers.

scifigal2k said...
Oh yeah, the bloody diarrhea is definitely a thing for me, as well as abdominal pain.

I'm a bit concerned that he put you on two weeks of antibiotics. Have you taken a probiotic at all? Have you had any stool samples done at all? Especially after the antibiotics? I strongly urge you to get those done. C. diff. is a common problem with antibiotics, and it's symptoms are pretty identical to Crohn's. Not saying you don't have Crohn's, but c. diff. mixed with Crohn's can be pretty awful.

I get mouth sores. Not to the extent that you do, but I get them when my Crohn's flares up. Also, several years before I had any Crohn's symptoms, I developed strictures in my esophagus that we just chalked up to GERD. With the benefit of hindsight, I think it may have been the start of Crohn's for me.

I was diagnosed very quickly, but that was because I went from perfectly healthy to literally overnight having over 20+ very bloody BMs per day. That got me into a GI within a couple of days, and a colonoscopy the week later. I was originally diagnosed with UC, but got an abscess that turned into a fistula a couple of years later, so the diagnosis was changed to Crohn's.

@beave has some excellent points. I would start taking iron, vitamin D, a probiotic (Florastor is one of the best), and vitamin B. That might help a bit with energy levels.

Well it's certainly nice to know you were able to be diagnosed so quickly as your symptoms seemed to have progressed rapidly - mine have been more gradual and chronic as opposed to acute. I am afraid they will all of a sudden progress, which is my greatest fear & is what is pushing me for a faster diagnosis.

I have had no stool tests done to date but don't know if my GI will recommend anything. I'll ask him about a probiotic - thanks for that input as well.

The mouth sores have got to be the most debilitating symptom outside of the bloody diarrhea. I know in doing research mouth ulcers are a common symptom of Crohn's, however, I haven't heard too many personal testimonies saying they actually suffered from them. I've had them nearly all my life and they are progressing.. I refuse to continue living thinking that I "just get mouth sores" like the loser ENT I visited years ago said.

Have you had the pillcam yourself? I am really confident this will show Crohn's, but I'm interested in other diagnostic tools I haven't yet had performed on me if it means i'll (finally) receive my diagnosis. The progressive weight loss is the other symptom that's really causing me relentless anxiety.. I'm sure most would be thrilled to lose weight, however, at only 110lbs i'm a really petite person to begin with and can't afford any more weight loss, let alone the weight I've already lost. Plus, it appears to be on a trend considering I've lost 3lbs in the past 3 weeks.

NiceCupOfTea said...
I had a pillcam done for the first time a few months ago. I had to swallow a dummy pill - a pill the same shape and size as the real thing, but without a camera inside. The dummy pill is designed to slowly dissolve if it does get stuck. I don't think from your symptoms it sounds likely that you have any strictures (narrowing), but if you are worried, either have the dummy pill first - or an MRI/CT scan like beave suggested. (An MRI scan is actually a pretty good test for visualising the small bowel and superior to the pillcam in a couple of ways - it can show thickening of the bowel walls and some other internal stuff that a pillcam can't show.)

Most people who get Crohn's start off by developing it slowly and gradually. It can explode overnight, but that isn't a particularly common beginning to the disease. In my case my symptoms couldn't have been milder and stayed pretty mild for 4 or 5 years. The only reason I'm certain it was Crohn's was because I just happened to luck out on getting an early diagnosis - my colonoscopy showed Crohn's, obviously.

PS: You should have had stool tests to rule out possible infectious causes of diarrhoea. Just dosing you with heavy-duty antibiotics and hoping for the best is being a bit reckless - particularly as antibiotics can have some horrible side-effects and increase the risk of catching c. diff.

Reply for @NiceCupofTea

First off - thank you so very much for your kind, detailed response.
I'm glad to read the pillcam showed Crohn's for you, as this is what I am ultimately hoping for. Now to read what you said about the MRI i'm stuck.. Is this a better predictor of Crohn's? I'm just desperate to get THE test that will most surely diagnose me so I don't have to go through more batteries of exams. This is all so frustrating, grr.

I will ask my GI about the stool test, however, my symptoms have remained somewhat the same since my round of antibiotics as they were before I received them, so I'm not so convinced it's caused by that.

Thanks a lot.

eleanor_rigby said...
Definitely get the stool test - specifically fecal calproctectin, which looks for inflammation in the intestines.

Thanks for this reply. I'll be looking into that as well.

If you don't mind me asking, how were you diagnosed? I see you have disease in your duodenum, which is kind of rare. I know colonoscopies can't reach this area, so were you diagnosed via upper-endoscopy?

I had a colonoscopy performed last week & unfortunately just learned that although my biopsies showed nothing, my GI only biopsied my colon & twice at that & NOT the small portion of the terminal ileum visible by scope. I am BEYOND baffled as to why he wouldn't have biopsied that area?! I'm most convinced that my disease is in my ileum, specifically in areas a scope wouldn't reach, so I guess it wouldn't have made a difference, but it would have been nice to know for certain, which now I don't. Annnd I don't really feel like "re-doing" that whole colonoscopy procedure. Call me crazy. I can't imagine why he didn't biopsy the terminal ileum.

Nikki83S said...
Hi,

First of all I am very sorry to hear about all your suffering. I know from experience (as many here do) how frustrating the quest for a diagnosis can be.

I am part of the apparently 20% that has Crohn's confined to the small bowel (did not know about this percentage btw). It took me a year to get diagnosed. The pill cam (had it twice) has been instrumental in getting the dx, as it was the only exam that very clearly showed ulceration. Apart from this, my bloodtest also gave a very good indication that they had to keep looking (CRP, WBC, ESR, HB).

It has been a very long ride, with many many tests, trials and misery. If I can help you by sharing my experiences I would be happy to do so. Feel free to PM me (i am assuming this is possible, if not let me know) with a list of questions and I will answer them based on my own experiences. If that is something you would be interested in of course.

Wishing you the best!

Hello & thank you so much for your reply,

I would love it if I could PM you with some questions as I'm really desperate here. I'm just unsure about how to do so? I'm sorry, but i'm fairly new to the website. Please let me know! If not, I see your email on your profile and I can shoot you an email, too.

Have a great day & thanks again,
Cait

I'm new here and only joined because I saw this post. I feel for you. I was diagnosed with Crohn's in March 2017 after 3 months of recurrent mouth ulcers. I'm a 39 year-old male who I thought was relatively healthy. I also thought they were canker sores. I actually had no digestive symptoms, but a barium study, calprotectin fecal test, and colonoscopy pointed to Crohn's. I had gone to my primary, an ENT, and a hematologist before the GI doc. Even the GI doc at my first appt. thought I was fine! I guess Crohn's can show up in various ways. The mouth ulcers are brutal and I lost 20 pounds in about 2 months.

I'm on my second month of Entocort (1st month was 9 mg/day, now 6mg/day, and then will have 1 month at 3 mg/day). The mouth ulcers went away almost immediately.

I am trying different diets, supplements, and probiotics, though my GI doc says there isn't conclusive evidence for any of these. I have found some research on these, but most of it says more research is needed.

Anyway, just wanted to share a little. I haven't seen much about mouth ulcers so I related as soon as I saw it. I hope you get better soon.

ElJefe said...
I'm new here and only joined because I saw this post. I feel for you. I was diagnosed with Crohn's in March 2017 after 3 months of recurrent mouth ulcers. I'm a 39 year-old male who I thought was relatively healthy. I also thought they were canker sores. I actually had no digestive symptoms, but a barium study, calprotectin fecal test, and colonoscopy pointed to Crohn's. I had gone to my primary, an ENT, and a hematologist before the GI doc. Even the GI doc at my first appt. thought I was fine! I guess Crohn's can show up in various ways. The mouth ulcers are brutal and I lost 20 pounds in about 2 months.

I'm on my second month of Entocort (1st month was 9 mg/day, now 6mg/day, and then will have 1 month at 3 mg/day). The mouth ulcers went away almost immediately.

I am trying different diets, supplements, and probiotics, though my GI doc says there isn't conclusive evidence for any of these. I have found some research on these, but most of it says more research is needed.

Anyway, just wanted to share a little. I haven't seen much about mouth ulcers so I related as soon as I saw it. I hope you get better soon.

Thank you for this note. Reading this was probably one of the most hopeful things i've come across in a while. I haven't heard much in my research regarding mouth ulcers but I know they can be a symptom, and I can't imagine, coupled with my GI symptoms, what else this could possibly be.

ElJefe said...
Update: still no return of the mouth ulcers. On final month of Entocort at 3mg/day. GI doc wants me to go on 6 MP. I don't want to take it. I'm containing with an anti-inflammatory diet and supplements, under a doctor's care. Also, going to see a different GI doc who might be more willing to discuss options and research with me.

Good luck! Keep us posted.

Thanks so much for the update. Unfortunately, mine isn't hopeful in the least. I wish I had better news to share but here's the second update I had posted in a different topic because I thought this one was deleted.. Gotta love technology.

Thanks to everyone who has commented, replied and engaged in conversation with me these last few weeks on my previous post. I appreciate every anecdote in the form of personal experience as well as any and all valuable suggestions/warnings or recommendations.

As I stated previously, I was set to receive my pillcam after a clean upper & lower endo. I finally did after back-and-forth with insurance representatives. Sadly, there was still no gross evidence to be found that could discern my diagnosis. The only comment from my GI was that the pill took what he considered to be a "while" to go through my digestive system - approximately 6 hours. He now is convinced I have an "Intestinal Functionality Disorder." In doing some research, I basically chalked it up to be the medicinal fancy name for IBS (mine would be subtype D for diarrhea) and I am really shocked. From the research i've been doing for months I learned IBS would not cause bloody (black & red in color) diarrhea, and that this symptom should not be brushed off as "normal." Also, I mentioned the severity of my recurrent mouth ulcers, which share no linear relationship with IBS as well. Severe weight loss is never mentioned either.

I am so lost & really, I can't see myself going on in this way for much longer. I downright refuse to accept I might have to "just live this way" because there is nothing lively about this life I am existing in. I can't go to the ER (or, I won't go) because I refuse to pay thousands of dollars to get a CT scan, have my blood taken, get fluids and pain killers and be sent off with a follow up prescription for a GI doxtor. My current GI is sending me to a more sub-specific specialist who deals with "Gastrointestinal Motility" in two-weeks time. I'm really hanging by a thread here quite literally - both physically and mentally.

Can anyone offer a parcel of information to my desperate self?
How likely could it be to have some form of a-typical Crohn's &i not have it show on an upper & lower endo as well as a pillcamera? Is that such a stretch when considering my symptoms?

In the event you haven't read my previous post, my symptoms are complied here as followed:
Severe stomach pain esp. in lower, right quadrant that can extend up my side & wrap around to my back
Severe bloating every time I eat
Frequent, bloody diarrhea which is both black in color & red
Hemmorhoids
Rapid heartbeat, especially after eating
Inability to digest esp. fats
Greasy stools
Green stools (rapid transit, no absorption)
Not able to "wait" to use the restroom
Feeling full from barely eating
Pain during & after eating that makes me have to stand up and walk around
Persistent low-grade fever with no cause
Low blood pressure
Severe, re-current mouth ulcers - at their worst I had 6 lesions at once
Weight loss
Severe fatigue

I've had:
Upper endoscopy - biopsies with no results other than evidence of gastritis
Colonoscopy - clean, biopsies ONLY of colon & NOT terminal ileum
Pillcamera - no gross findings
I was put on an antibiotic to rule out any intestinal infections.
No DX of Celiac but I have a gluten intolerance & have been eating GF for nearly three years. Symptoms persist.