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Crohn's Disease Forum » Your Story » Living in a world of "...maybe?"


08-30-2016, 10:29 PM   #1
HappyDiver
 
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Location: Victoria, Australia
Living in a world of "...maybe?"

Hey guys, nice to meet you!

I'm still wrestling with diagnosis issues, and I could certainly use some encouragement and feedback if anyone has the same issues (and I was tempted to post this in the "testing" thread, but it's a bit more airy-fairy than that). Also I like to tell stories (it's my thing). So this is a bit verbose and I won't be offended if everyone ever decides there's a bit TL;DR going on.

The possibility of my having Crohn's only really arose in January this year, but looking back a lot of issues point in that direction. It all started when I was fifteen, when I developed a very nasty peri-anal abscess (bigger than a cricket ball) and - being an embarrassed, self-conscious teenage girl - I didn't tell my mother about it until it was completely unavoidable (I even went horse riding with it. Then my instructor decided we should do sitting trot, and I nearly burst into tears...). It got cleaned out under a local anaesthetic (ow ow ow ow), and I ended up on horse-pill antibiotics. My mother was a bit weirded out, and we agreed that I'd tell her if it happened again.

It happened again. And again. And again. I'm now nearly 35 years old (birthday in three weeks) and I literally have lost count of the number of surgeries I've had to correct peri-anal abscesses. Doctors ask how many I've had and I honestly cannot tell them. I had one surgeon look in vain for a fistula when I was about 20. There's now so much scar tissue down there that doing it under a local is not an option (I have mixed feelings about this. My pain tolerance is really good and general anaesthetics trigger my depression, but then again... ow. So much ow). I've had many adventures having to walk into unfamiliar GPs and drop my pants (including a GP whose eyes bulged, said "I'm not touching that!" and sent me straight to the ED).

That whole time? I thought I had hidradenitis suppurativa (HS). I had doctors say it in this puzzled way - an odd presentation, they thought (usually you get lots of little bumps, not one big one), and since it's not a common condition and most of them have never seen it, they just shrugged and moved on. I had one GP mention in passing that it could be Crohn's, but she didn't test for it - just shrugged and moved on. "You don't want Crohn's," she said (but who does?).

This year, I had another trip to the ED (rapid accumulation, antibiotics ineffective, I know the drill). After being admitted and getting surgery, my follow-up appointment led to the surgeon suggesting an MRI to look for a fistula. I did that. Then I went to see another specialist, who just happened to have recently done a dermatology residency.

She, unlike any other doctor I'd ever seen, actually knew what HS looked like, and said in no uncertain terms that I did not have it. She proposed Crohn's.

Since then it's been a bit of an emotional rollercoaster, especially after I mentioned that, ever since my late teens, I've been prone to really random - seriously random - stabbing agonising gut pain. I've been checked for gallstones. I've been checked for kidney stones. I've had a laparoscopy for endometriosis (I did in fact have endometriosis, and I'm just recovering from a second laparoscopy which was negative - they got rid of it, and I'm still getting agonising menstrual pain with no obvious cause. Crohn's?). I've had an abdominal MRI. I've had an MRI enterography. I've had a colonoscopy.

Everything looks normal. My pelvic region is very healthy. My colon is normal. My kidneys are - and this is a direct quote - "photogenic" (best radiographer ever). My heart (long story) is stellar. My blood test results are great (liver enzymes tend to be a bit high, but not worryingly so), even better since I started eating keto.

Onto the diet issues. I feel sick after eating. It's been true for years. I kept going lower and lower G.I. - which would help for a while, but then the nausea would come crawling back. I got diagnosed with fructose malabsorption and gave up wheat (and fruit). This helped, but still: sick. Eventually I said, "Screw it, I'm going to go wild and try keto" even though part of me thought it was a fad. I feel 100x better. I still get gut pain, but I don't feel sick after eating any more. It sounds very much like it works for some and not for others, so I can't draw a lot of conclusions from it, but my new G.I. specialist seems to think I am doing the right thing diet-wise. (also my HDL is amazing. Woot.)

Re: inflammatory issues - I have hypermobility syndrome, so my joints rub and get inflamed easily (I do a lot of exercise and strength work to support them, which helps). I had childhood asthma which is apparently making a return (lung X-ray scheduled for tomorrow, spirometry the day after).

I've had a calprotectin test. I waited until I was in moderate pain to do it (it comes and goes), and the result was... 95? G.I. doc says that's high, but not so high as to mean it's clearly IBD. It's just a "something isn't right" result. My blood tests come back normal, as I said.

Extra-intestinal symptoms: I get thrush (sorry, is there such a thing as TMI on a Crohn's forum? ), especially when I break keto and eat wheat and other high carb things. I get night sweats (so weird). I get joint pain, but obviously that's hard to distinguish from hypermobility issues. I get fatigue, quite serious fatigue, especially during my period (which I thought was endo and apparently isn't). I also have some autonomic stuff, like mild orthostatic issues, but that's probably got more to do with hypermobility.

And even after the fistula correction, I get little abscesses popping up (they're going away by themselves at the moment).

I feel like all this is pointing at Crohn's - specifically ileitis, given the carb issues and the normal colonoscopy - but maybe I'm just desperate for an answer and it's all confirmation bias (the most insidious of cognitive biases!)? I don't want to live from codeine to codeine. I don't want that sharp stabbing pain in my gut, or the cramping that I have to breathe through, or the terrible periods. And I don't want to have to saunter down to ED every time I get rapid accumulation of abscesses.

I realise that by the standards of most Crohnies, I am pretty mild. I don't get bloody D (in fact, I tend more towards constipation, except during my period, and very occasional D the rest of the time). It's still awful to not know when agonising pain will creep up - and I also know that Crohn's is a progressive disease. If I have it, I want to know about it so I can monitor it! Forewarned is forearmed!

It's just that if knowledge is power, right now I feel fairly powerless.

Does anyone else have this much trouble getting diagnosed? What else causes peri-anal abscess and terrible gut pain? Has anyone else got middling calprotectin, great blood work and a negative MRI?
08-30-2016, 10:42 PM   #2
HappyDiver
 
Join Date: Aug 2016
Location: Victoria, Australia
Ohh, forgot to mention - my brother also apparently has bloody D when he gets stressed and has not ever checked it out. And my mother has skin issues which look a lot like erythema nodosum (sadly we do not have a good relationship so I am not inclined to ask her about her gut health, but I do remember back when that was diagnosed - she thought she'd been bitten by a white tail, but it happened multiple times and was always on her shins...).

So there's something weird going on genetically. I also get the hypermobility from my mother (yay, it's an autosomal dominant inheritance pattern!) and suspect the spectrum issues come from that source as well. Geez, mum! :P
08-30-2016, 11:08 PM   #3
ronroush7
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Welcome. I am sorry for all you have been through. I am glad you have had success with keto. There is a section in this forum called Undiagnosed Support Group or something similar. You mentioned fatigue. Have you been tested to see if you are anemic? Everyone is a little different. The symptoms might not all be the same. Hope you get some answers soon.
08-30-2016, 11:17 PM   #4
HappyDiver
 
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Thanks for your reply! I'm not anaemic, fortunately. I also don't have any trouble putting on weight, so whatever is going on in the ol' gut isn't stopping me from absorbing nutrients (although I wonder if some carbohydrates aren't getting rejected given my symptoms).

I will go and check out the "Undiagnosed" group!
08-31-2016, 03:26 AM   #5
eleanor_rigby
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Hello, I have Crohn's. My history includes normal blood work, fecal calproctectin prior to treatment was 65. My CT scan was completely normal. I never used to get D, but I suffered from time to time with HORRIFIC stomach cramps. Colonoscopy showed I had inflammation in my ileum. Endoscopy showed I had inflammation in my dudeneum (although they aren't sure if that's due to Crohn's or celiacs). I don't know what to tell you. Maybe an upper endoscopy or pill cam to visualise more of the small bowel? Pain and cramps are frequent symptoms of small bowel crohns, whereas D may not always feature.
08-31-2016, 03:32 AM   #6
HappyDiver
 
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Thank you for the reply! It's reassuring to know there may still be detectable things going on in the small bowel, and that D isn't always expected - I'm considering asking my GI doc for a pill cam but I may have just read the thread about pill cams getting stuck and I'm a bit scared! I fit some of the symptoms for gastro-duodenal Crohn's, so maybe an upper endoscopy.

It's weird to "want" Crohn's (I don't *really*), but it seems like many people on here completely understand that what we want is the diagnosis, the answer, so we can move on to the next step. I'm also considering asking him if trial treatment is an option, just to see if it works - a sort of diagnosis-by-medication (although that does always make me think of House, and it didn't always work so well there...).

Do you have celiac disease as well? I've often wondered if I should check for that. I felt a lot better when I quit wheat (because fructose); but my blood test for celiac disease came back normal. I have heard that the blood tests vary in their reliability, though, and I don't know which one I had - it was back before I had a tendency to google everything and read the primary literature (which is a problem. I'm a geneticist / marine biologist, not a medical specialist! Mostly we're talking the abstract and p-values... but can't really critique outside one's field so it gets messy).
08-31-2016, 12:04 PM   #7
Julia S
 
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Hey there! If your MRI or CT scan did not show any strictures, its probably safe for you to have a capsule endoscopy. I had a small stricture show on my MRI and I still did the Capsule Endoscopy and, although the capsule moved quickly through the rest of my bowel and took longer to get through the stricture, I still passed the cam the very next day. I also have ileitis and my calproctectin is never very high, blood work and colonoscopy are normal. The pill cam was the decisive test for me.
09-05-2016, 09:14 PM   #8
HappyDiver
 
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Thanks for the feedback! It's good to know there are other options. I'm repeating the FC and seeing my GI doc in two weeks and three days (not that I'm counting down or anything), so hopefully we can get moving on this. I got a bit of "Diagnosis Roulette" fatigue earlier in the year and needed to take a break from it all, but now that the laparoscopy is done and shows I *don't* have endometriosis anymore, I feel like symptoms will be less confusing and I can get back on the ride.

What a fun ride it is :P
01-14-2017, 06:10 AM   #9
HappyDiver
 
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Location: Victoria, Australia
Hey all, I'm sorry it's been so long since checking in! I've been lurking a bit and reading around but I'm usually on my phone and trying to type great detail on my phone gets out of hand very quickly!

Thank you for the replies and encouragement and well-wishes!

My tests all came back either negative or "meh", including a barium scan and a gastroscopy (first 80cms visualised), but since I was going away for physically intense offshore fieldwork, my GI doc gave me a trial of Budesonide (9mg).

It took 11 days to kick in. On day 9 I was giving up hope, I was sitting out at a show with a friend; I was in so much pain, knocking back codeine just to take the edge off; day 10 was a lot better; and then day 11 it was gone. Amazingly just... gone.

While I was on fieldwork, I didn't have much control over my diet, and also there was a lot of heat stress (work on deck in the tropics), and I had a few bad moments, but it was still so much better.

That was a few months ago. As per doc's instructions, I tried to taper down to 6 mg - pain came back within a few days, and I panicked and shoved the dose back up to 9mg. It's been over a month now, and it's still not great, not as good as it was for those first couple of months, and I'm stuck wondering if it doesn't work any more? Does that happen?

Anyway, that's where I'm at. I think I need to talk to my GI doc again to find a new plan. I've had to take prescription pain relief every day this past fortnight (although that's complicated because I had surgery for, ah, something completely unrelated! I got bitten by a cat - not my cat - and aha, cellulitis and IV antibiotics and so on... good times!).

I hope you are all doing well. I think I am going to try to be more active on the forum - not that I have much experience / knowledge to share on this as yet! (and remembering I don't have a definitive diagnosis. GI Doc is mostly "something is wrong and the targeted medication seems to work very well" but he's wary of giving it a definite label at this point, since if it is Crohn's, it's a mild / moderate form of ileal CD - no narrowing, some inflammation visible but no sign of scarring etc).
01-14-2017, 10:41 AM   #10
Jabee
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Your story sounds distressingly familiar to many I have read here and has some similarities to mine, although I am horrified that you have had so many perianal abscesses without a real working diagnosis. I was diagnosed first with celiac disease and responded very well to a gluten-free diet. Four years later I was severely anemic and after a bone marrow biopsy showed no iron in my body an endoscopy showed severe ulceration and a stricture in my duodenum my GI began to talk about crohn's. I responded quite well to treatment with PPIs, though, and thought no more of it. Nine years later I was hospitalized for severe inflammation throughout my jejunum and a partial bowel obstruction. I responded to IV then after discharge oral steroids, but after tapering began to have severe pain again, so my GI put me on Entocort. It worked fairly well for two years until I wound up in the hospital again, this time with duodenal and jejunal inflammation, raised CRP and ESR, and another partial obstruction. This time I left the hospital in severe pain and my GI felt that despite the unusual presentation (duodenal and jejunal inflammation; constipation not diarrhea) I definitely had crohn's. He put me on 6MP which promptly gave me severe pancreatitis, and after a miserable summer (which funnily enough included cellulitis from a cat bite like you) he put me back on Entocort. I was back at the hospital with severe pain in October and another CT scan showed narrowing in my terminal ileum as well as another partial obstruction. I actually saw him yesterday because I am still in a great deal of pain even after a clear capsule endoscopy in July. I am also having a hard time with the Entocort because it is making my chronic migraines much worse.

What I have learned over the last nine months is that GIs, like most doctors, want a "solid tissue diagnosis"; they want to see the inflammation before they decide what you have. But most people (and this is true of many illnesses), do not present with what are considered "classic" crohn's symptoms. This means many people like you are left in limbo for years. In addition different radiologists read imaging differently, and their different opinions can also muddy the waters.

I am still surprised that given your history of abscesses you haven't been diagnosed. Have you had biopsies taken? The mid-small intestine is considered the "black hole" of the digestive system since it is very difficult to visualize and biopsy, and inflammation can hide there. I would definitely consider a capsule endoscopy. Your GI seems to care, though, and I get the sense he isn't dismissing you.

There are several blood tests for celiac disease. Some GIs prefer one over the other. I've pasted a link to a site that explains the different ones. Please keep us updated on how you are.

https://celiac.org/celiac-disease/un...ase/screening/

Last edited by Jabee; 01-15-2017 at 08:34 AM.
01-14-2017, 09:10 PM   #11
sidney75
 
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Just a suggestion about the stomach pain - have you had a test for gastroparesis or SIBO? I have gastroparesis/intestinal motility issues and they cause loads pain and gi problems for me because of bacterial issues. And did you get your stomach biopsied?
02-10-2017, 10:50 PM   #12
HappyDiver
 
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Hey guys, back again for another flying visit.

Thank you so much for helpful comments. @Jabee it was especially good to hear that other people really do have diagnosable issues after having so many "...meh?" test results. I've been getting into a pretty bad headspace over the last months, as the whole "the steroids aren't working as well" turned into "constant pain", and then I was trying to find some sort of logical system for when to take painkillers and how much to take and... there is no system. And Googling chronic pain resulted in people suggesting to "reduce stress" and "meditate", and to be honest, I find mindfulness helps with so many things, but not the "I am being eviscerated slowly with the rustiest of spoons by an artist of torture" issue. Meditation is good. It is not *actual wizardry*.

I am so sorry to hear that the Entocort/Budesonide is so bad for your migraines. I feel like I've been very lucky to have almost no side effects from it (that I've spotted, anyway. I mean, I am also not having much progress with it either... more on that in a moment). Is there a plan to get you on another medication to try and avoid side effects, or are you supposed to just suck it up (for want of another phrase) in the hopes of remission? (remission with migraines doesn't really feel like a win I guess?)

Yeah, the abscess thing mystifies every doctor I talk to these days. So many of them have said "and you've NEVER had a colonoscopy? And no-one has tested you for Crohn's?" and the implied statement in their tone of voice is that, well, they're restraining themselves from saying "YOUR GP IS A GODDAMN HACK." (which it turned out he was, long story, but I believed in and had faith in that guy for years...)

@Jabee and @sidney75 : I have had some biopsies taken of stomach and the first 32cms of my intestine in a couple of spots that looked (and I quote) "sort of a bit inflamed", but they came back with "no evidence of mucosal disease." Which was a blow! My GI surgeon was starting to be convinced it was going to turn out to be all about gut flora - which obviously we can't rule out at this time (more on that in a mo).

It seems to be all about timing - if it is isolated small bowel, the disease seems to hide when it's not at its *absolute worst*.

As far as SIBO - which I had to google, because I know it under another name - I do actually have malabsorption issues with fructose and (mildly) with lactose. In fact, there's every indication I have malabsorption with carbohydrates overall, which is fun, because it means cutting out an entire macronutrient. A high fat diet has made me much more comfortable from a nausea perspective - and I'm less tired, almost as though I'm absorbing nutrients properly and not insulin cycling - and funny, I've lost weight, as though the fat I'm eating isn't just being shunted into storage - and I'm not hungry all the freaking time... so keto seems to be good when you have a diseased small intestine (although it is so much work, and not for everyone).

But yes, there is hard evidence that I end up with bacterial overgrowth when I abuse my diet and break keto (i.e., eat too many carbs). I bloat up like a marshmallow and feel very uncomfortable and that's not even counting the nausea. Unfortunately, that doesn't explain the pain that happens when I'm on keto and not bloated. So I suspect the carbohydrate malabsorption and resulting fermentation and bacterial overgrowth is secondary to whatever is going on in my small bowel.

Re: gastroparesis - I've never actually been tested for it. I don't think it's entirely likely in my case (although certainly possible, especially because I have hypermobility syndrome and thus ridiculous stretchy collagen, which can lead to all sorts of fun silliness with the digestive tract), mostly because I can eat quite an impressive amount of food in one sitting and be alright, at least I have in the past (before it all started to decline). I was always that person who, when someone said "No way could you fit a second crepe", set down my coffee mug, looked them in the eye, and said "THAT THERE SOUNDS LIKE A CHALLENGE. WAITER! BRING ME YOUR FINEST CREPE!" (okay, that only happened once, but it was delicious and hilarious... this was pre-discovering that I shouldn't be eating wheat. Good times).

Hypermobility itself (defective collagen) doesn't get *worse*, unlike Crohn's and inflammatory conditions - the joint damage is what gets worse, but I don't think my stomach emptying would degrade over time... would it? Maybe it would.

So much sympathy for your SIBO and gastroparesis issues - the fermentation has such nasty side effects, including all the extra-intestinal stuff (I have lady troubles when I break keto as well. There's a reason I take the women's urogenital special pro-biotics - which have actually really helped). Who doesn't love systemic conditions, huh? Have you been able to manage it reasonably well with diet or are you still searching for triggers?

But I really do appreciate all these suggestions. As a biologist (non-medical) I thought I was getting a pretty good handle on "things that can go wrong in your gut" but there is always new stuff coming out of the woodwork.

I love this forum, I really wish I knew more stuff so I could go and provide support and advice for other people, it has been so helpful even just with these interactions.
02-10-2017, 11:04 PM   #13
HappyDiver
 
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So, there has been an update- separate post for this- but I FINALLY got a test that came back with something almost useful. When I told my GI doc that the Budesonide wasn't working anymore, we re-tested my FC and - I presume since I took the sample when I was in literal honest-to-God Panadeine Forte plus Endone levels of pain (yes, I know opioids aren't the best option, but trying to get something more useful without a solid diagnosis is tricky at best) - it was 376.

Which, from reading on this forum, I know is not ridiculously high, but is well into the "holy crap wtf is wrong with you" scale of disease activity (that's some formal language right there. Honest, I science for a living).

I was honestly expecting it to come back in the 70-90 range because that has been the story of my diagnostic life. My GI surgeon had this tone in his voice which sounded like he was about to deliver bad news (which is very obvious, because he is an extremely jovial man. This is very good, because I communicate mostly in sarcasm and jokes, so we get along very well). Then he told me "We're not winning at the moment."

And I said "Wow, an ACTUAL RESULT WITH ACTUAL INFORMATION?" and I was so excited and he was very confused by my response. It's odd, all my friends get it.

Anyway, I have to make an appointment to talk to him face-to-face (one great thing about this guy is that he doesn't make you pay for scheduled appointments when you could just quickly chat on the phone, he'll leave scripts at the front desk - not only does this save so much $$$ and time, but it also frees up his schedule for people who actually *need* appointments), and the new plan may involve some sort of immunosuppressants, so don't be surprised if I am cruising the forums looking for info and What To Expect Now. He also wants me to see a Functional Nutritionist - which makes me very nervous, as I've already arranged my eating down to a fine pin, calculating macronutrients and micronutrients, and also I am quite ASD and I have some texture issues, and am always terrified that dietitians will try to make me eat things I literally cannot make myself swallow without gagging (I have tried. So hard).

But I will do it, because there is always room for improvement, and it turns out that when you tell medical people that you have a diseased small intestine, they don't give you crap about being low carb / high fat.

The other plan will involve some fecal occult blood test - if I get a useful result on that, I might be able to get a pill cam. I can't get one otherwise because I'm not anemic, and here, they are only funded if you're anemic mostly; otherwise it's $3000. I mostly don't complain about our medical system because I'm Australian and we are very lucky, even with its flaws (and there are certainly many flaws), but... I mean, we are lucky? We CAN afford $3000? But it's certainly a big chunk of savings.

This occult blood thing would get me through a "back door" in eligibility, and yes, we made butt puns. GI and colorectal doctors do love their butt puns.

I have a theory about why the Budesonide is not working so well any more, but it's a bit weird, so please tell me if you think I'm full of it. It's an enteric coated capsule that is designed to release the payload (so to speak) around the far distal end of the ileum, right? So that would work while the disease is restricted to that spot, but if it spread back up the small bowel, then the medication wouldn't be reaching the new inflammation, would it?

That is my theory - that the inflammation has spread - and it makes mechanistic sense in my mind. What do you think?

I hope you are all well and your diagnostic and treatment adventures are treating you well.

PS thing I meant to say in previous post - I know I am very lucky to have a GI doc who didn't dismiss my pain issues even in the lack of tissue-based evidence, and prescribed for me anyway. I can imagine how horrible it would have been to be sent home without anything, again; I think the main reasons he did prescribe for me were (1) 20 years of abscesses mean SOMETHING is going on and (2) I was going on two physically demanding field trips, back to back, and wouldn't have any control over my diet, and it might literally be dangerous if I didn't have *something* to go on. So if anyone is in the Melbourne area and needs a GI, let me know and I'll pass the name on. Do we have resource lists like that on here?
02-11-2017, 10:21 PM   #14
Jabee
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Hi HappyDiver:

Glad to get an update on how things are going. I have to say that I get quite frustrated by even my really great GI because he always tells me I am "an unusual case". After reading a number of stories on here about people's diagnostic journies it seems very few crohnies are "usual cases"! It's also hard because my GP and my GI don't work well together (the former wants me on more aggressive drugs, the latter doesn't; each would prefer the other prescribe any pain meds--the opiate crisis here in New England has made doctors reluctant to prescribe anything for pain even to responsible patients, and I've been in a fair bit of that pain you describe as being "eviscerated slowly with the rustiest of spoons by an artist of torture" for the past year--my GP would like all questions and routine tests to be done by my GI, which I think is ridiculous since GPs are supposed to be center of patient care). I haven't really felt well from the time of my first hospitalization for crohn's in August 2013. My youngest is off to college next fall and I'd like to go back to work but I can't figure out how to do that with my daily headaches, nausea, and gut pain. I used to teach at one of the local universities and sometimes I feel like my brain is withering away! All my medical issues started after the birth of my third child, and she is 18. I'm tired of trying to figure out my body!

I completely agree with you about trying to figure out a "system" for when to take something for pain and when not to. There totally isn't. I try using visualization and breathing to avoid taking something, but that just doesn't work when things are really bad. After I was released from the hospital last spring it took three days on oral pain melds to get my pain under control. It's also really annoying when people tell you it "shouldn't hurt". What does that even mean?

My apologies for complaining! You are right that Entocort is released primarily in the terminal ileum, although some of it covers more proximal parts of the ileum. It doesn't do much for jejunal or duodenal crohn's, though, and crohn's certainly can migrate. Mine has moved around quite a bit in my small bowel, and most recently I was in the ER with a partial obstruction in my sigmoid colon. I'm sorry the Entocort isn't helping anymore.

It's frustrating because unlike a broken bone or a sore throat or a deep cut what's going on in the guts isn't easily visible or treatable. Some people have abnormal blood tests with crohn's, others don't; some have diarrhea, some don't. The very variability of presentation makes diagnosis hard; the assumptions and presumptions of doctors just adds to that.

Good luck with the nutritionist and getting a pill cam. I've had two (fortunately I have great insurance that covers pretty much all the things I need) and the technology is quite amazing. The camera now responds to transit speed, and speeds up or slows down the image capture rate accordingly. Let us know how things are going and I hope you feel better. Oh. There is a doctor directory on the forum and you can list (and review, I think) your GI there.
02-11-2017, 10:37 PM   #15
ronroush7
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I am confused because Entocort is primarily for the terminal ileum. I was on it last year but I had my terminal ileum removed seven years ago.
02-11-2017, 11:25 PM   #16
cmack
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Hi HappyDiver,

Man this whole disease is Confusing! I'm never going to get an IBD diagnosis. I already have one. I have a good doctor, a GP who has declared me "permanently disabled due to surgical procedures." Thank god for him now I'm able to get educational assistance. Hopefully.

I hope you go out and seek the best and brightest my friend, because once they cut it out it's gone.


Wishing you all the very best in this life,

cmack
04-29-2017, 07:49 PM   #17
HappyDiver
 
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Hi again guys! I have been remiss in keeping up here, but just wanted to share that I finally have a diagnosis - thanks to the pill cam!

Which was a bizarre experience, but at least I got to go home and potter about and take the dog for a walk, which is much more productive than any other diagnostic procedure I can think of.

Patchy inflammation in the distal and middle parts of my ileum, apparently, so he is pretty confident that it's Crohn's. Apparently he wants to put me on Imuran, but I'm seeing him on the 12th to talk about pros, cons, monitoring and such forth and to actually get the prescription.

I'm having the emotional rollercoaster of "RELIEF AND JOY" (because I finally have a diagnosis) and "oh shit" (because as they say, now shit gets real, and I've confirmed that I do have an incurable autoimmune disease). Feeling a bit overwhelmed and panicky today, although yesterday and the day before I was great.

Diagnosis was the gold medal I was striving for, for so long, and now that I have it, I've just remembered it comes with consequences. Still, it is definitely for the best.

I hope you are all doing well!
04-29-2017, 07:52 PM   #18
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Location: vienna, Virginia

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Hi again guys! I have been remiss in keeping up here, but just wanted to share that I finally have a diagnosis - thanks to the pill cam!

Which was a bizarre experience, but at least I got to go home and potter about and take the dog for a walk, which is much more productive than any other diagnostic procedure I can think of.

Patchy inflammation in the distal and middle parts of my ileum, apparently, so he is pretty confident that it's Crohn's. Apparently he wants to put me on Imuran, but I'm seeing him on the 12th to talk about pros, cons, monitoring and such forth and to actually get the prescription.

I'm having the emotional rollercoaster of "RELIEF AND JOY" (because I finally have a diagnosis) and "oh shit" (because as they say, now shit gets real, and I've confirmed that I do have an incurable autoimmune disease). Feeling a bit overwhelmed and panicky today, although yesterday and the day before I was great.

Diagnosis was the gold medal I was striving for, for so long, and now that I have it, I've just remembered it comes with consequences. Still, it is definitely for the best.

I hope you are all doing well!
Glad you got a diagnosis.

05-08-2017, 04:14 PM   #19
OleJ
Senior Member
 
Join Date: May 2017
Location: Denmark

My Support Groups:
Hi HappyDiver.
I am sorry to read about your CD diagnosis. I too am new to this forum, but after 18 yrs og CD and some nosing around on these forums I finally got around to writing a "your story" today.
Firstly, it it seems you are already very knowledgeable about both diagnosis, symptoms, treatments, and diet/nutrition. That will help you a great deal going forward, I think.

Also, and the reason I write this, I noticed you do research which means you can read an academic paper. I just wanted to point you in the direction of a very interesting line of reesearch into a possible bacterial player (casusative agent?) in CD called MAP (Mycobacterium avium ssp. Paratuberculosis).
It is found in cows (mostly dairy), and gives them Johne's disease which is very similar to CD. It has previously not been possible to consistently see/culture MAP in humans, hence it's been regarded not a factor. But - so I undertand from reading recent research results - better PCR/culture techniques now show MAP in humans, and 8 times more frequently so in CD patients (appearently it takes on a spheroplast form with no cell wall, which makes it very hard to spot).
All of this is fairly new to me, but it is the first time in my 18 hears of having this friggin' condition I come across a plausible explanation of what #might# play a role in the disease mechanism. CD patients typically have a genetic variance in some genes (eg. NOD2), which increase the risk of CD. The hypothesis goes that other people without that variance can deal with the bug, but we can't. Hence it is often seen more than once in a family. My sister has a mild version of it.. Interestingly, resarchers have found that NOD2 is associated with suceptability to mycobacterium infections in mice.
Also interesting: I have read that Calcprotection is a protein that increases when you have a mycobacterium infection.
(I can't post links, but your Google-fu for "calcprotectin mycobacterium" can lead to a paper about it)

This lecture with Marcel Behr (Microbiologist and professor from Canada) is pretty informative:
Youtube: "Crohn's: autoimmune or infectious disease? "

A lab in NZ (Otakaro Pathways Ltd) can do the blood work (no, I am not a shareholder - and yes, it is not cheap). I live in Denmark, and currently struggle to find a courier that can send bloodwork fast enough so it doesn't spoil, and are willing to ship biologic substances. But I plan on finding a way. For now I avoid all food products doming from dairy cows (including cheese and minced meat).

Gosh, sorry for unloading all of this, but as mentioned this is pretty new for me and I guess it needed to come out.
Will stop now. More at humanpara [dot] org

cheers, Ole
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