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Posted 6/1/2017 5:22 PM (GMT 0)
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.
Posted 6/1/2017 6:05 PM (GMT 0)
He now is convinced I have an "Intestinal Functionality Disorder."

Fatal last words. Yeah, it is a fancy medical term for IBS.

I'm a little lost myself as to what to suggest next, because while all those symptoms taken together do sound like more than IBS, at a pinch I could see how they could be put down to severe IBS + haemorrhoids (bloody stools). As for the weight loss, that will happen if you are eating less regardless of cause - have you been eating less?

Have you had a faecal calprotectin test? It tests for intestinal inflammation and is normal in IBS, raised in IBD or intestional infections.

If you're that much at rock bottom, I think I would spend whatever it takes to find answers without actually making yourself bankrupt. I agree with you about the pointlessness of going to ER, which is just gonna charge you like $10,000 for an overnight stay in conditions that would make a youth hostel look luxurious. Avoid hospitals if you can, unless the pain becomes 10/10 or changes in a worrying way.

Consider the faecal calprotectin test and the Prometheus IBD diagnostic test. If the former is positive, that tells you there's intestinal inflammation present (stop taking NSAIDs and PPIs two weeks beforehand though, 'cos they can cause false positives). As for the latter test, I don't really know a lot about it, but in extremely nebulous cases I've heard it can aid in diagnosis.

Also, obvious question, but have you had blood tests? If so, I presume they all came back normal? I'm thinking of inflammatory markers like CRP and ESR, full blood count, liver function, and so on.
Posted 6/1/2017 6:19 PM (GMT 0)

NiceCupOfTea said...
He now is convinced I have an "Intestinal Functionality Disorder."

Fatal last words. Yeah, it is a fancy medical term for IBS.

I'm a little lost myself as to what to suggest next, because while all those symptoms taken together do sound like more than IBS, at a pinch I could see how they could be put down to severe IBS + haemorrhoids (bloody stools). As for the weight loss, that will happen if you are eating less regardless of cause - have you been eating less?

Have you had a faecal calprotectin test? It tests for intestinal inflammation and is normal in IBS, raised in IBD or intestional infections.

If you're that much at rock bottom, I think I would spend whatever it takes to find answers without actually making yourself bankrupt. I agree with you about the pointlessness of going to ER, which is just gonna charge you like $10,000 for an overnight stay in conditions that would make a youth hostel look luxurious. Avoid hospitals if you can, unless the pain becomes 10/10 or changes in a worrying way.

Consider the faecal calprotectin test and the Prometheus IBD diagnostic test. If the former is positive, that tells you there's intestinal inflammation present (stop taking NSAIDs and PPIs two weeks beforehand though, 'cos they can cause false positives). As for the latter test, I don't really know a lot about it, but in extremely nebulous cases I've heard it can aid in diagnosis.

Also, obvious question, but have you had blood tests? If so, I presume they all came back normal? I'm thinking of inflammatory markers like CRP and ESR, full blood count, liver function, and so on.

Hey & thanks very much for the reply!

I felt that was what that basically meant and I personally think that IBS is a bullsh!t diagnosis that translates to "we can't find the cause of your sickness & pain, so we'll stick it under this vast umbrella term." Unfortunately I really have a connection with my GI doc, and I put all my trust into his care. As you can imagine, this really stinks.

I've actually had no bloodtests done in several years since this all started. I know every time I have had regular blood tests in my life MY WBC counts were always high, which can indicate inflammation besides infectious causes. I haven't had a CRP & ESR & Im not quite sure what they are? I guess I could phone my GI office & ask for blood work. If not, I can ask my other GI doctor to order some labs for me when I go in approximately two weeks. I've also not had any fecal tests performed, my GI doc never even mentioned this to me.

I have definitely been eating less & when I can eat it is very limited foods & in small quantities. I am sure this is the cause of my weight loss but regardless, I couldn't afford to lose it in the first place & can't afford to lose any more or I'll be hospitalized for that alone.

This has for sure got to be the worst experience of my life & I have no answers, which is sometimes more painful than the most grim diagnosis.
Posted 6/1/2017 7:48 PM (GMT 0)
I'm less surprised by the faecal calprotectin test, 'cos not every doctor does it, but you have IBD investigations and not a single blood test is done?? What is wrong with your doctors? That, and investigative stool tests (not the calprotectin test, that's something else), are the first things which should have been done. Blood tests for a variety of things; stool tests to check for infectious causes of diarrhoea.

Another thing jumped out at me from your post and that's how underweight you are - if you are on the verge of hospitalisation you must be severely underweight. Anorexia (for whatever cause, doesn't matter if it's a physical or psychological one) can be pretty brutal on the GI tract. Everyone bangs on about the health benefits of fasting nowdays, so it's not exactly common knowledge, but prolonged starvation can cause slowed digestion (hence your slow transit), bloating, gas, malabsorption, etc. Your digestive tract needs regular food, and enough of it, to function optimally.

Starving yourself also won't cure whatever caused your original symptoms in the first place (whether it was Crohn's or something else). I can honestly say I can testify to that from personal experience: years ago I started eating less, mostly just to alleviate symptoms but also because I had a notion that putting less food into my guts might enable it to heal. They not only didn't heal, they got steadily worse. Over the course of 3-4 years I became very underweight - and I'm not one of those people who are naturally slender or have trouble putting on, or maintaining, weight. The masking effects of steroids enabled me to eat normally and I put on all the weight I had lost over the course of a year or so. I still had to have surgery though.

I ate loads after my first surgery, the more sugary, salty and unhealthy the better; the Crohn's never came back. It only came back after my reversal two years later. Long story short, I concluded that food - too little or too much of it, healthy or unhealthy - had literally **** all to do with my Crohn's disease.

So yeah: I think you need to work out a plan of action (preferably with a dietician) on how to increase your calorie intake and eat moar. I doubt you could binge anyway, but if you could, don't do that: at least not straight away. There's a small chance it could be dangerous and play havoc with electrolytes.

In the meantime I think you should probably just wait now to see the new GI in two weeks. Hopefully he will be competent! I'm not entirely convinced your current GI is.
Posted 6/1/2017 11:50 PM (GMT 0)
I'm with NCOT - what the heck is WRONG with your doctors? When you start having bloody BMs, the FIRST thing they should do is stool samples to test for parasites or infections like giardia, c. diff., e. coli, salmonella, and the list goes on. My gosh.
Posted 6/1/2017 11:52 PM (GMT 0)

NiceCupOfTea said...
I'm less surprised by the faecal calprotectin test, 'cos not every doctor does it, but you have IBD investigations and not a single blood test is done?? What is wrong with your doctors? That, and investigative stool tests (not the calprotectin test, that's something else), are the first things which should have been done. Blood tests for a variety of things; stool tests to check for infectious causes of diarrhoea.

Another thing jumped out at me from your post and that's how underweight you are - if you are on the verge of hospitalisation you must be severely underweight. Anorexia (for whatever cause, doesn't matter if it's a physical or psychological one) can be pretty brutal on the GI tract. Everyone bangs on about the health benefits of fasting nowdays, so it's not exactly common knowledge, but prolonged starvation can cause slowed digestion (hence your slow transit), bloating, gas, malabsorption, etc. Your digestive tract needs regular food, and enough of it, to function optimally.

Starving yourself also won't cure whatever caused your original symptoms in the first place (whether it was Crohn's or something else). I can honestly say I can testify to that from personal experience: years ago I started eating less, mostly just to alleviate symptoms but also because I had a notion that putting less food into my guts might enable it to heal. They not only didn't heal, they got steadily worse. Over the course of 3-4 years I became very underweight - and I'm not one of those people who are naturally slender or have trouble putting on, or maintaining, weight. The masking effects of steroids enabled me to eat normally and I put on all the weight I had lost over the course of a year or so. I still had to have surgery though.

I ate loads after my first surgery, the more sugary, salty and unhealthy the better; the Crohn's never came back. It only came back after my reversal two years later. Long story short, I concluded that food - too little or too much of it, healthy or unhealthy - had literally **** all to do with my Crohn's disease.

So yeah: I think you need to work out a plan of action (preferably with a dietician) on how to increase your calorie intake and eat moar. I doubt you could binge anyway, but if you could, don't do that: at least not straight away. There's a small chance it could be dangerous and play havoc with electrolytes.

In the meantime I think you should probably just wait now to see the new GI in two weeks. Hopefully he will be competent! I'm not entirely convinced your current GI is.

The potential of blood tests has been weighing heavy on my mind for several months now. My doctor had briefly mentioned it, but led me to believe that they were generally inconclusive & I guess not something he felt was a sufficient intervention? I feel I should probably inquire about getting bloodwork - be it from my main GI or this new one I'm going to see.

My weight has been on the lower side for several, several years now. It started a few years before I was diagnosed with a gluten intolerance non-celiac. However, I only had an allergy panel run for that & know how inconclusive those are specifically, because Celiac isn't an allergy in the least. I've been eating GF for years now as mentioned, so a colonoscopy nor the pill cam would have shown internal damage because it would have repaired itself by now. My weight is low now from food-related anxiety (i.e. not waiting to eat because pain is my impending doom), which my doctor suspected and said would happen, but it's also because of frequent diarrhea I am sure. Most of the food I eat is excreted in green/bloody diarrhea, which means the food nor its nutrients were ever even absorbed in my intestines or, "rapid transit" as my doctor labeled it. Sorry for so many specifics, though I am sure in suffering IBD you are beyond being "grossed out" lol.

As sad as it is to admit, I was really praying through all the battery of tests I've had that something would show because I could have had an answer. I am sure I'm the only person who's ever prayed they'd find "something" - most pray for nothing. And I'm not even one to pray at all.

Thanks again for all your kind words.
Posted 6/1/2017 11:55 PM (GMT 0)

scifigal2k said...
I'm with NCOT - what the heck is WRONG with your doctors? When you start having bloody BMs, the FIRST thing they should do is stool samples to test for parasites or infections like giardia, c. diff., e. coli, salmonella, and the list goes on. My gosh.

I hadn't even known about stool samples to be quite honest.

To 'rule out' any intestinal infections I was put on an antibiotic regimen that would have cleared up my symptoms should they be due to infectious causes. Seeing as I continued progressively going downhill & based on my other symptoms, infection as a potential was ruled out all together.
Posted 6/2/2017 12:11 AM (GMT 0)
I wonder at all if a biopsy had been taken from the terminal ileum during my colonoscopy (only three from my colon were taken because my MD was sure it was colitis even though I expressed concerns specifically regarding Crohn's) I might have a different answer? Does anyone think this could be possible even if my pillcam failed to show abnormalities? I know one downside of the pill cam is that it can't take biopsies.
Posted 6/2/2017 1:35 AM (GMT 0)
I'm far from convinced you have Crohn's, but the dumbass way your doctor has gone about doing things has made it much harder to confirm/eliminate. Blood/stool tests are absolutely standard at the beginning of an investigation. They can't diagnose Crohn's on their own, no, but they can give a lot of other information which may be highly relevant. And as for not running stool tests with bloody diarrhoea, but just giving you a random course of antibiotics and hoping for the best...

I think you ought to find another GI doctor in all honesty, and I don't mean your "functional gut disorder" specialist. None of these people seem to know what they're doing - only 3 colon biopsies and no terminal ileum ones? Again, what do they think they're playing at?

Find another doc and start over again with the diagnostics. Also I would take the gluten-intolerance result with a whole quarryful of salt - these food intolerance tests aren't worth the paper they're printed out on. Coeliac disease is a real, measurable disease; gluten intolerance is some vague phenomenon which isn't. (IB4 IamCurious or somebody has a go at me.)

PS: Nah, it's pretty common for people to want the tests to find "something" when they've been suffering for months or years without any answers. Symptoms are somehow harder to bear when they have no label and your doctor doesn't take them seriously. Even IBS is a better label than nothing at all, but I would want every test under the sun before I accepted that label. Think you mentioned low-grade fevers - dunno how low is low, but fevers are deffo not an IBS symptom. The blood could be explained by the hemmies, but also by IBD or an intestional infection.

Post Edited (NiceCupOfTea) : 6/1/2017 7:41:49 PM (GMT-6)

Posted 6/2/2017 1:56 AM (GMT 0)
I agree, you need a GI. Giving you antibiotics to "rule out" infections is beyond idiotic. First, not all bacteria will react to the same antibiotics. A parasite vs. a bacteria, for example. Second, antibiotics give EVERYONE diarrhea, so having worsening symptoms doesn't mean much. Third, antibiotics, even the heavy-duty ones, can CAUSE infections like c. diff. So even if the antibiotics killed another infection, you could have gotten a second one. Fourth, not knowing if there was an infection means you can't look into post-infectious IBS (which is basically PTSD, only for your gut).
Posted 6/2/2017 3:54 AM (GMT 0)
As some of us suggested in your other thread, yes, blood work and stool cultures should have been done long before you got to the point of doing scopes, pillcam, etc. That's really poor practice on your doctor's part.

Six hours for the pillcam passage doesn't seem that out of the ordinary to me.

scifigal2k is right about antibiotics - different antibiotics treat different bacterial infections. Without knowing what infection you *MIGHT* have, giving you an antibiotic is a total shot-in-the-dark, and one that could even make you worse, not better.

Based on all your test results, it's pretty unlikely you have Crohn's. But you seem to me to have more than IBS going on. Again, blood tests! CBC with differential. Liver function. Complete metabolic panel. Pancreatic enzymes. CRP and ESR. Those should have been ordered the very first visit with your GI.

Your symptoms could be from a gall-bladder problem. Or from a liver problem. Or from a problem with your pancreas. Or a problem with your small bowel (and there are immune-related small-bowel problems other than Crohn's).

To start narrowing it down, blood tests and stool tests (have I said that enough? smile)
Posted 6/2/2017 11:27 AM (GMT 0)

beave said...
Six hours for the pillcam passage doesn't seem that out of the ordinary to me.

This is true. I meant to comment on this part, but forgot. My small bowel passage time was over 10 hours! (Not including the stomach. Or a colon, 'cos I don't have one anymore.) That's proper slow, but my GI seemed more concerned with how long the pill spent in my oesophagus (19 seconds if anyone is wondering). It apparently zipped through my stomach though.

So yeah, 6 hours actually seems pretty normal to me - considering that the pill has to go through your colon as well.
Posted 6/2/2017 12:42 PM (GMT 0)

NiceCupOfTea said...
I'm far from convinced you have Crohn's, but the dumbass way your doctor has gone about doing things has made it much harder to confirm/eliminate. Blood/stool tests are absolutely standard at the beginning of an investigation. They can't diagnose Crohn's on their own, no, but they can give a lot of other information which may be highly relevant. And as for not running stool tests with bloody diarrhoea, but just giving you a random course of antibiotics and hoping for the best...

I think you ought to find another GI doctor in all honesty, and I don't mean your "functional gut disorder" specialist. None of these people seem to know what they're doing - only 3 colon biopsies and no terminal ileum ones? Again, what do they think they're playing at?

Find another doc and start over again with the diagnostics. Also I would take the gluten-intolerance result with a whole quarryful of salt - these food intolerance tests aren't worth the paper they're printed out on. Coeliac disease is a real, measurable disease; gluten intolerance is some vague phenomenon which isn't. (IB4 IamCurious or somebody has a go at me.)

PS: Nah, it's pretty common for people to want the tests to find "something" when they've been suffering for months or years without any answers. Symptoms are somehow harder to bear when they have no label and your doctor doesn't take them seriously. Even IBS is a better label than nothing at all, but I would want every test under the sun before I accepted that label. Think you mentioned low-grade fevers - dunno how low is low, but fevers are deffo not an IBS symptom. The blood could be explained by the hemmies, but also by IBD or an intestional infection.

Oh, trust me when I say I realize the recklessness of pumping someone full of antibiotics without a clear diagnosis. I was highly reluctant to take them, however, I am pretty young & beyond desperate. I am willing to give a measure so drastic as exploratory surgery a chance at this point. Plus, not as an excuse for my MD's mistakes (not defending them at all) but this went on in the week prior to my birthday, so I was merely hoping it would at LEAST provide relief for me to at least enjoy my day. (I obviously didn't).

Luckily I do live within close proximity to a leading hospital (which is actually my alma mater, too) so I can inquire about a GI there.

Not to defend myself here (because I don't feel I need to) or discount your knowledge on the subject but saying a food intolerance is hardly worth the written diagnosis or immeasurable can be quite offensive. Thinking abstractly, and as someone well versed in the discipline, psychological illnesses are hardly measurable also. You can't see them, touch them, hold their diseased counterparts in your hands. They are just as intangible as my "hardly worth the paper it is printed on" food intolerance. I am sure those plagued by mental illness would be highly offended to read a condition not otherwise "real" or "measurable" in the eyes of medicine is not a true illness, or suffering, for that matter. I just wanted to address my position here. There's plenty of research on NCGI (non-celiac gluten intolerance) worth the exploration. My suffering is as real as an individual with Celiac only, you're right, physician's can't measure it, which is why it often goes undiagnosed for years (as did mine). Not to compare, but that seems arguably more painful in some respects.

But i'm not here to argue or to defend my position. I posted here as a human being who is suffering a great deal to reach out for human contact, as is normal for our species. I just wanted some insight from individuals I felt would be more expert on a subject I was thrown into against my will, as were all of you. Suffering should bring people together, not rip them apart.

I most certainly want to explore every test and uncover every stone before I sit before a physician and accept "IBS-D" as a label forever attached to my name. I personally though that diagnosis was a load of bullcrap (sorry to anyone who has this condition, but this is merely my opinion and you are not forced to entertain opinions that don't align with your own). I won't have my suffering be chalked up to a syndrome "we can't fix/treat/do anything about." The thought of having some good days, some bad (and let me remind you, my best days are only brought about by ODing on anti-diarrheals and anti-acids and not eating more than Jell-O and crackers) is seriously mentally paralyzing. Plus, I know IBS DOES. NOT. cause bleeding (I have both black & red blood) or a low-grade fever - mine hovers around a 99.

If you have any idea of any disease that causes symptoms that are identical and I mean IDENTICAL to Crohn's - please let me know! Maybe that would be my potential answer.

Post Edited (Cait2017) : 6/2/2017 6:55:07 AM (GMT-6)

Posted 6/2/2017 12:48 PM (GMT 0)

beave said...
As some of us suggested in your other thread, yes, blood work and stool cultures should have been done long before you got to the point of doing scopes, pillcam, etc. That's really poor practice on your doctor's part.

Six hours for the pillcam passage doesn't seem that out of the ordinary to me.

scifigal2k is right about antibiotics - different antibiotics treat different bacterial infections. Without knowing what infection you *MIGHT* have, giving you an antibiotic is a total shot-in-the-dark, and one that could even make you worse, not better.

Based on all your test results, it's pretty unlikely you have Crohn's. But you seem to me to have more than IBS going on. Again, blood tests! CBC with differential. Liver function. Complete metabolic panel. Pancreatic enzymes. CRP and ESR. Those should have been ordered the very first visit with your GI.

Your symptoms could be from a gall-bladder problem. Or from a liver problem. Or from a problem with your pancreas. Or a problem with your small bowel (and there are immune-related small-bowel problems other than Crohn's).

To start narrowing it down, blood tests and stool tests (have I said that enough? smile)

I agree whole heartedly about the antibiotic treatment! Trust me. I had my personal reasons for agreeing to that course of treatment. Besides, it's not something that can be undone or redone at this point. Our distorted thoughts allow us to agree to things we wouldn't normally dare in moments of weakness or otherwise desperation. I am still so beyond desperate.

Thank you very much for giving me the specifics on what to ask for when I inquire about blood panels. I had no idea what to ask for or what should be measured when looking for imflammatory markers. I want to leave no stone unturned.

I will be sure to order those!
Posted 6/2/2017 1:40 PM (GMT 0)
Just as a note: IBS itself does not cause bleeding, but it is extremely common to develop hemorrhoids (internal and external) from it, and those DO bleed.
Posted 6/2/2017 2:00 PM (GMT 0)
I'm not blaming you for taking the antibiotics: I fully understand the desire to get relief, any relief, no matter how small. You should be able to trust your doctor, and no doubt he meant well - I certainly don't think he was trying to make you worse. From my point of view he seemed reckless, but I wouldn't have known that when I was first diagnosed - I could have been prescribe cyanide for all I knew anything about the risks of the meds I was taking.

I scrapped everything I said about food intolerance, because I'm tired (once again not enough sleep) and just ended up waffling without saying anything that I think would enlighten everyone.

You ignored my post about starvation and the effects on digestion. You can't know if you have genuine food intolerances until you gain weight and get your digestive tract up to speed again, which will take months. Unfortunately there's very few studies on the effects of severe calorie restriction and weight loss, because for ethical reasons researchers aren't allowed to starve people. They did it once, in a study known as the Minnesota Starvation Experiment. They were all men, but it's unlikely the results would be much different for women. Here's an interesting article on the subject: www.refinery29.uk/minnesota-starvation-experiment

Re mental illness. I suffer from mental illness myself, have had since my early teens at least. Depression (diagnosed) and OCD (not diagnosed). Oh yeah, and I was also diagnosed with ASD (Autism Spectrum Disorder) 3 years ago. So I know about having conditions that can't be "measured". I also suffer from fatigue and a load of GI symptoms, which nothing can be done about. So even when you have an objectively measurable condition, that all docs can agree on, sometimes there's still nothing which can be done anyway.

I'm not saying you should give up at this point. I think you should carry on fighting but give up on the Crohn's for now 'cos there's no real evidence you have that. Get a full set of bloods done, see what they show - perhaps you do have gallbladder disease or liver disease like beave suggested. If bloods are all normal, then I would see a dietitian, as well as functional disorder guy, and work out a weight gain plan. If you do go on a weight gain diet, expect to feel worse for a few weeks before you feel better; it's normal. It won't be a fun few weeks/months but that might resolve your symptoms. If it doesn't, have another round of diagnostics again, starting with blood/stool tests.

I hope you find something useful from that wall of text to take away. And I really did not mean to offend you: I just have a blunt way of speaking, which I try to mitigate but just usually end up making things worse.
Posted 6/2/2017 2:10 PM (GMT 0)

scifigal2k said...
Just as a note: IBS itself does not cause bleeding, but it is extremely common to develop hemorrhoids (internal and external) from it, and those DO bleed.

This.

IBS doesn't cause bleeding; hemmies do.

As for the fevers, in people with a body temperature that tends to run low, 99F could be a sign of a low-grade fever for them. But my experience of fevers is that doctors don't take them seriously until they go above 38.0C :/ (Sorry, I'm used to celsius but that's 100.4F).

I've just thought of one more blood test to add to your list: thyroid function test. You might have hypothyroidism (with or without an autoimmune component - getting checked for thyroid antibodies should be a part of the thyroid function test, but check first because I'm not 100% certain).
Posted 6/2/2017 2:28 PM (GMT 0)

NiceCupOfTea said...
I'm not blaming you for taking the antibiotics: I fully understand the desire to get relief, any relief, no matter how small. You should be able to trust your doctor, and no doubt he meant well - I certainly don't think he was trying to make you worse. From my point of view he seemed reckless, but I wouldn't have known that when I was first diagnosed - I could have been prescribe cyanide for all I knew anything about the risks of the meds I was taking.

I scrapped everything I said about food intolerance, because I'm tired (once again not enough sleep) and just ended up waffling without saying anything that I think would enlighten everyone.

You ignored my post about starvation and the effects on digestion. You can't know if you have genuine food intolerances until you gain weight and get your digestive tract up to speed again, which will take months. Unfortunately there's very few studies on the effects of severe calorie restriction and weight loss, because for ethical reasons researchers aren't allowed to starve people. They did it once, in a study known as the Minnesota Starvation Experiment. They were all men, but it's unlikely the results would be much different for women. Here's an interesting article on the subject: www.refinery29.uk/minnesota-starvation-experiment

Re mental illness. I suffer from mental illness myself, have had since my early teens at least. Depression (diagnosed) and OCD (not diagnosed). Oh yeah, and I was also diagnosed with ASD (Autism Spectrum Disorder) 3 years ago. So I know about having conditions that can't be "measured". I also suffer from fatigue and a load of GI symptoms, which nothing can be done about. So even when you have an objectively measurable condition, that all docs can agree on, sometimes there's still nothing which can be done anyway.

I'm not saying you should give up at this point. I think you should carry on fighting but give up on the Crohn's for now 'cos there's no real evidence you have that. Get a full set of bloods done, see what they show - perhaps you do have gallbladder disease or liver disease like beave suggested. If bloods are all normal, then I would see a dietitian, as well as functional disorder guy, and work out a weight gain plan. If you do go on a weight gain diet, expect to feel worse for a few weeks before you feel better; it's normal. It won't be a fun few weeks/months but that might resolve your symptoms. If it doesn't, have another round of diagnostics again, starting with blood/stool tests.

I hope you find something useful from that wall of text to take away. And I really did not mean to offend you: I just have a blunt way of speaking, which I try to mitigate but just usually end up making things worse.


NCOT, first of all thank you for clearing up your intentions as well as your position. I was not offended in any way, just merely wanted to "stand up" for myself and others who do not have measurable conditions in a tangible way.

Please do take away the message that I would absolutely not attempt to offend your conditions in any way at all also. I spent six years in college studying both Psychology and Sociology - if that doesn't prove I have a deep rooted passion, interest as well as a soft spot for these sufferings I don't know what could! I DO agree that unseen illness is indeed VERY real, which was my only argument here! I'm glad we could clear things up though!! smile

I apologize for not replying to the comments on the effects of starvation on the body. I have a real cloudy mind from all of my GI symptoms as of late & have hardly been alert and able to translate my thoughts. My memory also isn't as sharp anymore, so please believe it was a comment I simply forgot to address - not refused to. In saying I majored in Psych Minn. Starvation Experiment I know like the back of my hand & am well versed on the negative (potentially damaging) ramifications of starvation on the entire human body. I do feel my body needs a "re-set" however, the more I eat, the more I use the bathroom & end up just losing what calories I attempted to consume & then some. It's quite the vicious cycle. My not eating (or severely restricting what I am willing to eat) is my desperate attempt at keeping my condition, whatever the hell it is, at bay. Not a pleasant position, but it's become what I know for now.

I am willing to fully accept ANY potential GI diagnosis so I'm not hell bent on Crohn's - I just feel that my symptoms are identical to the proposed ones. I couldn't find any other GI condition that I meet all criteria for as I do CD, which is why I was so sure that was the answer. I am definitely going to pursue the route of blood work as well as stool testing. What exact bloodwork panels are run for symptoms such as mine, do you know from experience?
Posted 6/2/2017 2:36 PM (GMT 0)

NiceCupOfTea said...

scifigal2k said...
Just as a note: IBS itself does not cause bleeding, but it is extremely common to develop hemorrhoids (internal and external) from it, and those DO bleed.

This.

IBS doesn't cause bleeding; hemmies do.

As for the fevers, in people with a body temperature that tends to run low, 99F could be a sign of a low-grade fever for them. But my experience of fevers is that doctors don't take them seriously until they go above 38.0C :/ (Sorry, I'm used to celsius but that's 100.4F).

I've just thought of one more blood test to add to your list: thyroid function test. You might have hypothyroidism (with or without an autoimmune component - getting checked for thyroid antibodies should be a part of the thyroid function test, but check first because I'm not 100% certain).

Thanks! I do know I have hemorrhoids because my doctor was able to view them on the colonoscopy. He never mentioned if they were internal, external, etc. However, I do know they only cause bright-red colored blood which only happens to me when I notice a hemorrhoid flare. Otherwise, i've had black stools, which I know have other causes just not sure what and there's been enough blood in the toliet I don't think even a few hemorrhoids could have been the culprit.

A low grade fever for me is anything above 98 because my temperature prior to this situation had always been on the low side. It's been at a constant 99.something since January (and probably before, but GI symptoms weren't as present then, so I wasn't as hyper-aware).

Thanks again! I'll add those tests to my ever-growing list!
Posted 6/2/2017 3:58 PM (GMT 0)
Cait - No worries; glad we managed to sort that out! :p

I didn't realise you knew all about the Minnesota starvation experiment! It's the only one of its kind that I know of, and I find it strangely fascinating for some reason. I know the Minnesota men did heavy physical exercise as well, but I find it a bit scary when I see young adult males talk about going on diets of 1800 calories a day and those men were on 1600 calories a day. Everyone's so busy screeching about the obesity crisis (and I don't deny obesity is a problem) that nobody thinks about the dangers of eating too little or of cutting out several food groups, or of gymbros downing litres of protein drinks.

I think beave covered all the main blood tests, but I'll have a go at listing them.

- CRP
- ESR
- Full Blood Count (FBC)
- Liver Function Test
- U & E (Urea & Electrolytes)
- Ferritin (measures iron stores)

Those are all the ones that I get. about once a year I get my thyroid tested. I googled thyroid function test, and it doesn't include the test for thyroid antibodies - you'll need a separate test for that, known as an anti-TPO test.

I would also ask for a vitamin B12 test, as that's often low in Crohn's disease.

I've checked beave's list again. He also includes pancreatic enzymes (amylase and lipase) and a complete metabolic panel. I had to google metabolic panel cos I wasn't sure what it involved. It seems pretty similar to the U&E and LFT tests that I mentioned. Er, okay, if you are in the US use beave's terminology, not mine. I'm from the UK and some terms will be different. Hope this helps... >.>
Posted 6/2/2017 7:05 PM (GMT 0)

NiceCupOfTea said...
Cait - No worries; glad we managed to sort that out! :p

I didn't realise you knew all about the Minnesota starvation experiment! It's the only one of its kind that I know of, and I find it strangely fascinating for some reason. I know the Minnesota men did heavy physical exercise as well, but I find it a bit scary when I see young adult males talk about going on diets of 1800 calories a day and those men were on 1600 calories a day. Everyone's so busy screeching about the obesity crisis (and I don't deny obesity is a problem) that nobody thinks about the dangers of eating too little or of cutting out several food groups, or of gymbros downing litres of protein drinks.

I think beave covered all the main blood tests, but I'll have a go at listing them.

- CRP
- ESR
- Full Blood Count (FBC)
- Liver Function Test
- U & E (Urea & Electrolytes)
- Ferritin (measures iron stores)

Those are all the ones that I get. about once a year I get my thyroid tested. I googled thyroid function test, and it doesn't include the test for thyroid antibodies - you'll need a separate test for that, known as an anti-TPO test.

I would also ask for a vitamin B12 test, as that's often low in Crohn's disease.

I've checked beave's list again. He also includes pancreatic enzymes (amylase and lipase) and a complete metabolic panel. I had to google metabolic panel cos I wasn't sure what it involved. It seems pretty similar to the U&E and LFT tests that I mentioned. Er, okay, if you are in the US use beave's terminology, not mine. I'm from the UK and some terms will be different. Hope this helps... >.>

Oh, trust me as someone who's been thin for several years now I completely agree and say nothing but "amen!" to your comment! Being too thin is oftentimes more compromising on the body & can result in quicker, irreversible symptoms than obesity can. Not to discount those with obesity as it can obviously lead to potentially deadly consequences as well. I tried the whole "protein supplementation" a few years back & they did not a thing but wreck havoc on my already disturbed intestines. So it's safe to say I agree 110%!

Thanks so much for compiling a list - I do much better this way! I'm going to add it to my personal list to bring with me to my next appointment. I have to do this or i'm sure to forget something, no matter it's importance in my life. Actually, I've had low b12 & my primary MD told me to take a supplement, which even after taking my levels were still the basement floor of the "acceptable range." That's interesting - I hadn't come across much literature on b12 levels and CD.

Ha-ha. I am in the US, actually! I have had several blood panels in my life but my most recent is August of 2016 (I believe). This was after my constant complains of heart palpitations though, and wasn't measuring any kind of inflammatory markers or liver enzymes/levels at all. I will be sure to include thyroid in there also.

Thanks!!
Posted 6/2/2017 7:11 PM (GMT 0)

NiceCupOfTea said...
Cait - No worries; glad we managed to sort that out! :p

I didn't realise you knew all about the Minnesota starvation experiment! It's the only one of its kind that I know of, and I find it strangely fascinating for some reason. I know the Minnesota men did heavy physical exercise as well, but I find it a bit scary when I see young adult males talk about going on diets of 1800 calories a day and those men were on 1600 calories a day. Everyone's so busy screeching about the obesity crisis (and I don't deny obesity is a problem) that nobody thinks about the dangers of eating too little or of cutting out several food groups, or of gymbros downing litres of protein drinks.

I think beave covered all the main blood tests, but I'll have a go at listing them.

- CRP
- ESR
- Full Blood Count (FBC)
- Liver Function Test
- U & E (Urea & Electrolytes)
- Ferritin (measures iron stores)

Those are all the ones that I get. about once a year I get my thyroid tested. I googled thyroid function test, and it doesn't include the test for thyroid antibodies - you'll need a separate test for that, known as an anti-TPO test.

I would also ask for a vitamin B12 test, as that's often low in Crohn's disease.

I've checked beave's list again. He also includes pancreatic enzymes (amylase and lipase) and a complete metabolic panel. I had to google metabolic panel cos I wasn't sure what it involved. It seems pretty similar to the U&E and LFT tests that I mentioned. Er, okay, if you are in the US use beave's terminology, not mine. I'm from the UK and some terms will be different. Hope this helps... >.>


To add (there goes my stellar memory!)...
Do you have any knowledge of the Prometheus Serology 7 IBD blood panel? I saw this come up once during research & someone even went so far as to say it is "gold standard" in IBD diagnoses.

When I had asked my GI about blood work in previous visits, he seemed highly reluctant & said they often are not good, clear measures of inflammation & can't completely warrant a diagnosis of IBD.

Opinions?
Posted 6/2/2017 7:42 PM (GMT 0)
Your GI got something right for a change. The Prometheus IBD test isn't accurate enough to be able to diagnose somebody with Crohn's; it can only give additional evidence in that direction. I must admit, I don't know an awful lot about it - I've never had it done myself. I tend to think if it was of any real value the NHS would have adopted it, 'cos they would do crystal ball readings if it saved them money on colonoscopies. But in borderline, unclear cases (e.g. negative biopsies), the Prometheus test can have value. I think beave knows more about it than me, so he may weigh in.

Okay, here's a slightly revised list for you...

- CRP (inflammation)
- ESR (inflammation)
- Full Blood Count (FBC)
- Complete metabolic panel
- Ferritin (measures iron stores)
- Thyroid function test
- anti-TPO test (thyroid antibodies)

The complete metabolic panel covers kidneys and liver from what I've read, so I don't think you need to ask for separate tests for those. Apparently the basic metabolic panel doesn't include liver tests, but the complete panel does - I learn something new every day.

Oh and one more thing.

- faecal calprotectin. That's a stool test, not a blood test though.
Posted 6/3/2017 4:05 AM (GMT 0)
The Prometheus test, by itself, generally isn't enough to diagnose Crohn's. At some point either scope results or MRI results are needed, preferably biopsies too. But with a lot of symptoms and a positive Prometheus test, it should be enough to convince a doctor to keep looking (ie, keep doing scopes and scans) in a person who has symptoms but hasn't yet been officially diagnosed.

Their test looks at a few things: a few gene mutations linked to IBD; inflammatory markers like CRP; the presence of certain auto-antibodies (that happen more with UC, less with Crohn's); and antibodies to certain bacteria and antibodies to yeast.

It takes more than any one of those for the results to be positive. They have an algorithm where they search for patterns in those results to determine whether you might have UC, Crohn's, or neither.

They've done a lot of their own studies that show the test is around 90% accurate, both in terms of specificity and sensitivity, with hundreds if not a few thousand people tested.

But it's not accepted by a lot of insurance (and govt run insurance) because those results have not been verified by any independent third parties.

So it's not at all a "gold standard" (unless you work for Prometheus!!, who, by the way, is very near where I live and I've met some people from there).

But like I said, IF it came back positive AND you have symptoms AND every other test it negative, it should tell a doctor not to blow you off entirely, but to keep the possibility of IBD on the table and to repeat tests like scopes in due time if symptoms worsen or continue.

Post Edited (beave) : 6/2/2017 10:08:33 PM (GMT-6)

Posted 6/3/2017 12:37 PM (GMT 0)

NiceCupOfTea said...
Your GI got something right for a change. The Prometheus IBD test isn't accurate enough to be able to diagnose somebody with Crohn's; it can only give additional evidence in that direction. I must admit, I don't know an awful lot about it - I've never had it done myself. I tend to think if it was of any real value the NHS would have adopted it, 'cos they would do crystal ball readings if it saved them money on colonoscopies. But in borderline, unclear cases (e.g. negative biopsies), the Prometheus test can have value. I think beave knows more about it than me, so he may weigh in.

Okay, here's a slightly revised list for you...

- CRP (inflammation)
- ESR (inflammation)
- Full Blood Count (FBC)
- Complete metabolic panel
- Ferritin (measures iron stores)
- Thyroid function test
- anti-TPO test (thyroid antibodies)

The complete metabolic panel covers kidneys and liver from what I've read, so I don't think you need to ask for separate tests for those. Apparently the basic metabolic panel doesn't include liver tests, but the complete panel does - I learn something new every day.

Oh and one more thing.

- faecal calprotectin. That's a stool test, not a blood test though.

Thanks so much for compiling this list for me!! You can't imagine how appreciative I am of this kind & helpful gesture.

I will be sure to ask for these things. I have a feeling the new doctor I will be seeing will ask me for bloodwork when I admit I haven't had any since August of last year, and certainly it wasn't looking to give numbers on ANY GI issues because they had just begun a few days after I got the labs drawn, actually.

Funny how things work out!
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