So my doctor says I might have Crohn's...

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newbie00
Regular Member


Date Joined Jan 2009
Total Posts : 26
   Posted 1/22/2009 12:58 PM (GMT -7)   
Here's my story:
 
I just turned 28.
 
about 4-5 months ago I started experiencing some random nausea which was leading to weight loss.  Now, I have a very fast metabolism, and I am (was) also a competitive weightlifter, so I used to eat a lot of calories just to not lose weight.  In other words, if I miss a few days of eating, I will lose 4-5 pounds.  Anyway, I went from about 175 to around 155 in about a month, but I had no symptoms other than random nausea throughout the day.
 
A few months later I had random bouts of diarrhea.  I'd be sitting at my desk working or whatever, and then get the urge "oh hey, I have to go diarrhea now."  I'd go to the bathroom, do my thing, and then go back to work.  My next bowel movement would often be regular.  I should add that through my life I randomly have diarrhea here and there, sometimes following an exotic meal, and other times triggered by stress, so I never thought much of it.
 
Six weeks ago I was sitting around watching TV when I got this pain out of the blue in my lower right groin area.  The pain moved around a bit, and traveled from my inguinal region into the top of my thigh, sometimes into my right testicle, and back into my groin.  It moved around throughout the day.  I immediately assumed I had a hernia and went to the doctor, who found no evidence of a hernia.  I then got a urine test to check for kidney stones, which was negative.  He told me to take some ibuprofin and just lay low for a while, thinking perhaps it was a pulled muscle (even tho I hadn't done anything physical in months) so I did, and over a week the pain went away.
 
Three weeks later, the pain came back during a bowel movement (diarrhea) while I was visiting my parents.  I immediately thought "Uh oh, this isn't good" and went to see my doctor.  I told my doctor about the weight loss, nausea, and pain, and got checked again for a hernia, which showed no results.  My doctor told me to "eat more" because I was losing weight, and I said I would love to, but I'm nauseous quite often.  She immediately sent me to the hospital to get a CT scan.
 
During the next week, I experienced significant nausea and abdominal pain that moved all around, from my groin, into my thigh, into the approximate appendix area, into my right hip bone, into my kidney area in the back.  It was on the right side 90% of the time.  I should add that every time I had a pain, I would press on it, but that never increased the pain (I was basically attempting to self-check myself for an appendicitis, which typically increases in pain if you press on it).
 
The CT scan showed "mild thickening of the terminal ileum wall."  I was told to go see a gastroenterologist.
 
The gastro looked at my CT results with me and said "this might be IBD, we need to either confirm or rule it out ASAP because if it is, we need to start on treatments right away."  I got scheduled for a colonoscopy and upper endoscopy the following week.  He told me not to eat a lot of fiber as that could make the diarrhea worse.
 
The result of my colonoscopy was relatively unremarkable, however my gastro doc told me that one of the biopsies had a granuloma which was "suggestive, but not indicative, of Crohn's."
 
The result of my upper endoscopy showed that I have a hiatal hernia, but that was not likely causing my abdominal discomfort.
 
I just had a bloodtest that is supposed to check for Crohn's markers that is being sent to Prometheus Labs in California.  I'm also supposed to schedule a small bowel follow through xray.
 
 
Randomly, within a few days after the colonoscopy, my abdomen started feeling better.  I suspected maybe there was something goofy going on in my bowels and the colonoscopy prep cleared it out (it cleared out everything else in there, lol).
 
about a week ago, the pain came back in my lower right groin area, moved around that bottom area and into my thigh like before.  I had one more hernia test (negative) and another urine test (negative).  Over the past 4 days, it has slowly worked it's way up into my lower right abdomen and it currently varies between my right hip bone, right kidney, and the midpoint between my navel and right hip bone.
 
Ever since the colonoscopy my bowel movements have been relatively "normal."
 
Let me try to describe this pain.  It's not like a debilitating pain.  I would describe it as somewhere between "discomfort" and "pain."  When it's in my abdomen, it feels like the feeling you get if you rip a scab off.  I almost want to stick my finger into my guys and scratch it (if that was even possible), if that makes any sense.
 
Anyway, I've been doing a ton of research as to what it could be, and I'm actually quite freaked out that it could be Crohn's.  I've heard that NSAIDs aren't good for Crohn's, so I've started taking Tylenol for pain instead.
 
I asked the doctor if it could be chronic appendicitis (rare) and he said my appendix looked normal on the CT scan.  I keep hoping to find another (easily treatable) condition that matches my symptoms, but I can't.  The other thing I thought of is C. Diff.  I *was* on antibiotics about 3 months before this whole ordeal started...
 
 
One other symptom I should mention, as I've heard this can be a symptom of Crohn's.  For the past few months I've noticed that I have had the WORST smelling gas and bowel movements.  I mean normally it doesn't smell good, but I'm talking like it's extra vile now.  Even when I was visiting my parents over the holidays, when I came out of the bathroom after having a bowel movement they were like "omg, we could smell you out here!"  My family isn't ashamed to talk about poop. lol.
 
 
So I just wanted to present my story here.  Does this sound like it could possibly be Crohn's?  What conditions can result in granulomas that aren't Crohn's?  What conditions other than IBD can result in ileum inflammation?  I've heard just standard gastroenteritis can cause bowel inflammation, and I did have diarrhea before my CT scan, but then there would be something else causing my continual lower right quandrant pain.  In fact, I was almost hoping I had a hernia, because that would explain every symptom.  Don't get me wrong, I don't want a hernia, but I'd choose that over Crohn's.  I haven't had any blood or mucus in my stools ever.
 
My diet continues to be reduced as I'm not really that hungry.  I'm down to 144 pounds now and I kind of look like a skeleton (I'm 5'9" and about 8-9% bodyfat).  I'm trying to eat mild foods just to not upset anything.  I drink Kefir in the morning for breakfast (probiotic yogurt), lunch is usually something bland like ramen or crackers and peanut butter, and dinner is something a little more substantial like mashed potatoes and a bit of meat.  (compare this to my previous diet which was 4-5000 calories a day, lots of protein, weight lifters diet, etc.  I eat less all day now than I used to have in one meal before).
 
I'm getting worried now because every day that lower right quandrant pain becomes slightly more intense.  The Tylenol doesn't do anything.  The pain just comes and goes as it pleases, but it's usually present.
 
Oh, and finally, I'm worried if it's Crohn's because I know that corticosteroids are used to treat inflammation, but I developed chronic tic disorder at 17 (I know it makes me quite a statistical outlier to develop it at that age), and steroids will worsen the condition.  Are there any other anti-flammatories that can be used in place of prednisone or corticosteroids?
 
You know, I probably do have Crohn's.  Tic Disorders have theories suggesting that they are autoimmune, and Crohn's has been suggested to be autoimmune as well.  I think my immune system hates me.  I was always perfectly healthy until I was 17.  Turns out my high school had "sick building syndrome" and was full of toxic mold.  A bunch of teachers and students got weird diseases.  Some molds are neurotoxins.  Yeah, that's probably what did it.
 
Anyway, cheer me up and suggest other conditions I could have other than Crohn's.
 
 
 
(edit - fixed some formatting issues)

Post Edited (newbie00) : 1/22/2009 1:08:20 PM (GMT-7)


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 1/22/2009 1:33 PM (GMT -7)   
Well there are more things pointing to Crohns in your account than to anything else that I can think of. The one key factoid is the granulpma finding on biopsy . . . that's a pretty strong Crohns marker, thougn not definitive absent any other visual finding. It is posisble to have a clean colonoscopy and still have Crohns, especially at a fairly young age, when you may not have the thickening and scarring that comes with longstanding disease. Sometimes a scope just catches us between flare cycles. The SBFT will also likely help a lot to pin this down, since you may well have more active disease in the small bowel. Failng that, you may want to consider a pill camera test for a more definitive look at the entire small bowel. Overall, your history, symptoms, pain location, etc. all sound a lot like Crohns, albeit what may well be a relatively mild case. As alternatives to consider (given symptoms and weight loss history) there is always gall bladder disease (unlikely at your age, pain not quite located right), thyroid imbalance and of course the old standby IBS, which mimics Crohns without the deep tissue involvement. Anyway, yuo seem to ahve a good handle on your medical treatment and options. Good luck and if you offocially join the Crohns ranks, stop by here off and on, it's a good information source.

cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/22/2009 1:39 PM (GMT -7)   
My first colonoscopy also said that there was nothing that would indicate Crohn's. Mine also disappeared for a while, then would come back suddenly.

Your symptoms do sound like its Crohn's, but don't fret. A lot of doctors now bypass the steroids step and go directly to immunosuppressants (be it Imuran, 6MP, Methotrexate) for several reasons. There are a few articles about this in several medical journals...maybe do a quick Google search.

Good luck to you, don't worry.
22 Female, currently on MTX. Previously on Imuran, Remicade, Pentasa, etc. Ileocolic resection in 2006.


newbie00
Regular Member


Date Joined Jan 2009
Total Posts : 26
   Posted 1/22/2009 1:57 PM (GMT -7)   
Oh yeah I forgot to mention, the doctor said after the SBFT it would be the camera pill.

I also had my thryroid checked 6 weeks ago and it was normal.

I'm just worried cuz it sounds like all the immunosupressant treatments have other bad side effects, like not being able to shake a cold or flu.

I've read a bit about stem cell treatments that are still experimental, but most of that was dated in 2007. Have there been any new developments in that field?

cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/22/2009 2:22 PM (GMT -7)   
trust me, ive beaten plenty of colds in my lifetime and actually, i haven't had the flu in a few years.

being that you are newly diagnosed, you are not a candidate for stem cell therapies. its also reserved for those with the most serious cases who haven't responded to anything.
22 Female, currently on MTX. Previously on Imuran, Remicade, Pentasa, etc. Ileocolic resection in 2006.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/22/2009 2:23 PM (GMT -7)   
Hi Sounds like you have a good Dr. that is taking his time to find the problem and that is part of the battle for some finding a diagonis.Some here have had the pill cam and have had sucess with that in diagonising there problem. As mentioned Imuran is a med used and the biologics. The biologics do have sideeffects as do most meds .Some here also have special diets that help with there crohn's. Keep in touch and let us know how things are going. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/22/2009 2:37 PM (GMT -7)   
It's the mild thickening of the terminal ileum wall that would have me thinking CD as well, plus the D and weightloss combined with the mild TI thickening...just curious though, has your gallbladder been checked as well?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


newbie00
Regular Member


Date Joined Jan 2009
Total Posts : 26
   Posted 1/22/2009 3:07 PM (GMT -7)   
As for my gall bladder, I'm not sure; is that something that would have been checked on the CT scan?

I actually just found my notes from my doctor's voicemail. Here is what he said:

- Overall, nothing really bad

- some nodularity to terminal ileum, natural lymphoid hypoplasia (maybe he said hyperplasia)

- biopsies of colon - a single pieces looked suspicious for granuloma which could be suggestive, but not indicitive, of crohns

- at this point we should be suspicious of crohns, but not diagnostic

- Get the blood test (did yesterday)

- get SBFT

- if follow through shows narrowing, start medication

- capsule test (the pill camera)

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 1/22/2009 3:08 PM (GMT -7)   
Immunosuppressants like imuran and 6mp only ratchet down your immune system a small amount, hopefully enough to slow or stop the runaway immune response that causes Crohns inflammation and damage. Most patients don't see major issues with colds, flus, etc. The one primary thing to watch is possible suppression of your white cells, which is why they check blood regularly while you are on this therapy. There are many people on this board who have had good results from the immunosuppressants over extended periods of time. The whole treating Crohns game is a trial and try again effort, since every patient is unique and no one's case is exactly like another. And I would second my previous comment and the subsequent one re asking about possible gall bladder investigation, as a lot of your symptoms could also be related to that, which is fortunately easy to fix by just snipping the little devil out.

newbie00
Regular Member


Date Joined Jan 2009
Total Posts : 26
   Posted 1/22/2009 3:18 PM (GMT -7)   
I just checked my CT scan results, it said "the gall bladder was within normal limits."

newbie00
Regular Member


Date Joined Jan 2009
Total Posts : 26
   Posted 1/22/2009 3:22 PM (GMT -7)   
Why does the pain extend into my upper right thigh sometimes? Is that just referred pain since abdominal pain is relatively non-specific?

cutie
Regular Member


Date Joined Jan 2009
Total Posts : 80
   Posted 1/22/2009 3:36 PM (GMT -7)   
I get a pain on my right side quite frequently but never in my thigh.
age 41,diagnosed with CD in 11/07, Rx Pentasa 4000mg and Remicade.


newbie00
Regular Member


Date Joined Jan 2009
Total Posts : 26
   Posted 1/22/2009 3:45 PM (GMT -7)   
In searching the net it seems that there are a lot of "alternative" theories on Crohn's.

How liberal is this forum? I have seen some forums where people are completely anti-traditional-medicine and others where people are completely anti-anything-that-isn't-backed-by-science.

I just read an article now about "curing" cases of Crohn's using a low carb diet. And another one suggesting Crohn's is caused by drinking milk from a cow with Johne's disease eyes. And another one saying you can cure it with the antibiotic streptomycin. Wow.

Is this just a bunch of voodoo? Has anyone here had success with "alternative" treatments?

caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/22/2009 4:04 PM (GMT -7)   
The CT scan showed "mild thickening of the terminal ileum wall." I was told to go see a gastroenterologist.

It's very typical for people with CD to have exactly this part inflammated. Have you done that test where they give you this white liquid and you drink it and then they take pictures of your small intestine. I have no idea how it's called in English. I'm guessing you're terminal ileum has started narrowing. I'm not a doctor so don't take my word for it, but this test I mentioned above could help you!

about food...they say that it is very necessary for people with CD to eat everything. Of course, when you don't feel well it's really important that you eat only boiled food, the one that doesn't cause gas, soups are really important, food with a lot of B12 vitamin since people with CD don't absorb it well.

Everybody has the right to choose what they'll eat of course. I'm just speaking from my own experience and from what I hear from my doctors, and some of them are highly appreciated in Europe.

I hope it's not CD, I really do. I'm sorry I can't give you some more information right now. I hope I helped at least a little bit.

I'm sorry you can't take steroids...they usually help when you have a stenosis, if that's your case.

PM if you need any help. :)

P.S. really not trying to play smart, I'm just speaking from my own experience so I hope it helps at least a bit.
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.


newbie00
Regular Member


Date Joined Jan 2009
Total Posts : 26
   Posted 1/22/2009 4:16 PM (GMT -7)   
>It's very typical for people with CD to have exactly this part inflammated.

Yeah, that's why I'm worried.

>Have you done that test where they give you this white liquid and you
>drink it and then they take pictures of your small intestine. I have
>no idea how it's called in English. I'm guessing you're terminal ileum
>has started narrowing. I'm not a doctor so don't take my word for it,
>but this test I mentioned above could help you!

That's called a "small bowel follow through" (I think). I'm getting it done soon (haven't scheduled it yet).

caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/22/2009 4:25 PM (GMT -7)   
I think it's really important that you do that test! Sometimes there are no other symptoms in any other part of the intestines. The pain you describe could be coming from your terminal ileum. It's normal to have diarrhea if that part is under inflammation and the fact that you feel sick all the time definitely could be a sign. Do you burp a lot? How many minutes/hours does it take for you to feel nauseous after you eat? For me it was about 4 hours and then the pain would start...but it's a thing of air and pressure so some people feel nauseous the minute they start eating. Not sure that I'm explaining this well.

about alternative stuff...like I said I really don't believe in that that much. CD is autoimmune and the way I see it, the only thing you can do is to try to lower your immune system to mild the symptoms. They say CD is genetic and that something in the environment also triggers it, but nobody knows what exactly. The only thing that's definite is that smoking worsens it.

I hope you get to find out if it's CD soon! :)
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.


newbie00
Regular Member


Date Joined Jan 2009
Total Posts : 26
   Posted 1/22/2009 4:48 PM (GMT -7)   
I don't burp very often.

My nausea doesn't necessarily come after I eat. It comes randomly on random days and doesn't seem to be related to whether or not I eat.

I have been passing a lot of gas however.

And I don't smoke :)

caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/22/2009 4:51 PM (GMT -7)   
newbie00 said...
I don't burp very often.

My nausea doesn't necessarily come after I eat. It comes randomly on random days and doesn't seem to be related to whether or not I eat.

I have been passing a lot of gas however.

And I don't smoke :)


Passing a lot of gas is a blessing! hehe :)
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 1/23/2009 1:03 PM (GMT -7)   
We have a variety of people here, so there's a lot of different viewpoints regarding treatments and such...

At any rate, yeah, it does sound like Crohn's (If it does turn out to be Crohn's, just remember that it isn't a death sentence. And many people live fairly normal lives after diagnosis *they just have to take medicine and watch what they eat*)...

Pain in your thigh? Hmm... It might be unrelated to your intestines. You could have pulled something working out (you mentioned you weightlift)... Perhaps you should talk to a doctor about it if its really bothersome.
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/23/2009 4:09 PM (GMT -7)   
caroline_r said...

about alternative stuff...like I said I really don't believe in that that much. CD is autoimmune and the way I see it, the only thing you can do is to try to lower your immune system to mild the symptoms. They say CD is genetic and that something in the environment also triggers it, but nobody knows what exactly. The only thing that's definite is that smoking worsens it.

I hope you get to find out if it's CD soon! :)

Actually, a lot of people have found relief with alternative/natural methods...also, it's not necessarily that our immune system is under or over active, it's a matter of it being malfunctioned...researchers went back and forth for yrs arguing if it was under or over active and have recently come to the conclusion it's malfunctioned, our immune system simply doesn't work properly/effectively.  There are also many possible triggers related to IBD if you're genetically predisposed to getting an IBD in the first place.  Smoking is one known trigger, but smoking doesn't necessarily make every CDer worse either...fast-foods, animal fats, processed foods/beverages, caffeine are also all suspected in exacerbating IBD symptoms and may even be triggers.
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)


newbie00
Regular Member


Date Joined Jan 2009
Total Posts : 26
   Posted 1/23/2009 6:51 PM (GMT -7)   
I'm scheduled for small bowel follow through xray on Wednesday.

The thigh pain radiates from my abdominal pain. Sometimes the abdominal pain moves around, into my back, or my hip bone, or around my navel, or into my groin, or into my thigh. But it's never in all the places at once. It's in one or another.

Tell me about this blood test I got that is being sent to Prometheus labs. I hear it's not very reliable and doesn't confirm a diagnosis or anything. Does it just check to see if you have the genetics that *may* be susceptible to Crohn's and/or UC?

caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/24/2009 12:15 PM (GMT -7)   
pb4 said...
caroline_r said...


about alternative stuff...like I said I really don't believe in that that much. CD is autoimmune and the way I see it, the only thing you can do is to try to lower your immune system to mild the symptoms. They say CD is genetic and that something in the environment also triggers it, but nobody knows what exactly. The only thing that's definite is that smoking worsens it.

I hope you get to find out if it's CD soon! :)

Actually, a lot of people have found relief with alternative/natural methods...also, it's not necessarily that our immune system is under or over active, it's a matter of it being malfunctioned...researchers went back and forth for yrs arguing if it was under or over active and have recently come to the conclusion it's malfunctioned, our immune system simply doesn't work properly/effectively. There are also many possible triggers related to IBD if you're genetically predisposed to getting an IBD in the first place. Smoking is one known trigger, but smoking doesn't necessarily make every CDer worse either...fast-foods, animal fats, processed foods/beverages, caffeine are also all suspected in exacerbating IBD symptoms and may even be triggers.


:)


I know that a lot of people find relief with alternative/natural methods, I'm just not so much into it. I'd be willing to give it a shot but not without the meds my doctor and I decide on taking. Just stated my opinion above :)

I know that our immune system simply doesn't work properly but I also know that for most people lowering the Immune system is the only thing that helps. Again, not making any claims here :) about smoking, you're absolutely right. I know a lot of people with CD that smoke and it doesn't make their CD worse, so it's all individual. Everything is relative, of course. :) I think I didn't make myself very clear in my answer above...I tend to do that a lot :) thanks for correcting me :)
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/24/2009 4:38 PM (GMT -7)   
Caroline_r :)

It's such a fickle disease there doesn't seem to be one answer for all, the main thing is finding whatever works and sticking with it...a lot of people use RX along with naturals as well and do very well, others still struggle, it's a tough disease and so much more needs to be learned, I'm sure we can all agree on that.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/24/2009 8:55 PM (GMT -7)   
I know this is a little late, but I thought I would share my fiance's experience with groin area pain. His turned out to be a vein that needed to be redirected with surgery because it would be increasingly painful in his testicles and groin area. His surgery did improve things and he didn't lose any 'parts' but there are still intermittent stabs now and then. Just thought maybe you could ask about that next time you go in if it sounds at all similar. He says it's called varicocele. I looked up symptoms on mayo clinic, but that's not much help in this case. It's more like what you and my fiance describe.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


newbie00
Regular Member


Date Joined Jan 2009
Total Posts : 26
   Posted 1/24/2009 10:52 PM (GMT -7)   
LMills said...
He says it's called varicocele.


I had a hydrocele when I was born.

I'm told they thought it was a hernia, but it was a hydrocele instead. Not sure how easy it is to mess those two up. I'm told I had surgery to correct it.

This is on the same side. I wonder if it's related.
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