I was told that it looks like I have Crohn's, but something doesn't add up...

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Silverandblue18
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted Yesterday 7:48 PM (GMT -7)   
Hi all! I am new to this website and before a couple months ago I had never even heard of Crohn's Disease, and I am in desperate need of advice. My doctor says that I most likely have Crohn's, but something just isn't adding up. Okay, so here it goes (This is a fairly long read, and I'm sorry if there's unnecessary data, I just wanted to be thorough)...

about 3-4 months ago I got really sick for two weeks, then I immediately got sick again with a nasal infection for a week or so, then immediately after that I had an infection in my intestine/s (where there have been problems ever since). After taking antibiotics, etc. I not only didn't getting better, but my lower stomach continued to swell and got extremely painful, I had extremely uncomfortable diarrhea (like I've never seen before), and had the symptoms of appendicitis, so much so that my doctor sent me to the hospital to get a CT Scan immediately and put a surgeon on standby. The CT Scan came back showing a hardening of the intestines and both my doctor and the surgeon decided that it looked like early signs of Crohn's Disease, so he has been treating me accordingly for the last two months (he also put me on 2 stronger antibiotics to handle the infection in my intestines which wasn't fully handled by my previous antibiotic).

Okay, that all sounds like Crohn's right? Well here's where it gets tricky, the pain and diarrhea have completely stopped 2 months ago with the use of the stronger antibiotics, I've never had any blood in my stool, and my symptoms are now inconsistent with what I see in Crohn's sufferers (I still have some swelling in my lower abdomin, but only to the point of being uncomfortable, no pain). Ever since I originally got sick I have been EXTREMELY tired, and I mean freakishly tired (this coming from a guy who has had chronic fatigue before... which was light compared to this) and after two months of treatment it seems to be getting worse instead of better! I am a 27 year old athletic male and for the past three months I have been so physically tired that haven't been able to do virtually anything. For example about a month ago I did three sets of bench press to help keep my muscles from deteriorating too much and I was so exhausted the next day that I stayed in bed all day! When I move too much I get exhausted and if I work too much I get nauseas and sometimes even throw up. It has gotten so bad that I was told by my work to take off as long as I need to get my body handled, and then come back to work, because it was obvious that I can't work a full time schedule right now... even working 4 hours per day is pushing it for me. Also, I get a full night's sleep yet am still exhausted all day and must take multiple hour naps everyday or I feel like I am going to fall asleep all night. I have felt like I'm 80 years old for the past 3 months and I can't take it anymore! I need to get this handled so I can get back to my active life again.

Does this sound like Crohn's? If not, then what could it be? Please help!!!

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted Yesterday 8:01 PM (GMT -7)   
for 12 1/2 yrs i only had one symptom of crohn's-anemia. it made me really tired. Until now, now tings have changed. But duriing that 12 yr period dr keep saying i had crohns and to tak all these meds to keep it in remission. i never had all the other problem. I have since had a blockage and now have all the other issues like the big "D" and feeling just awful at times.

What blood work have they done. you sound a little like me. I am 47 and was diagnosed at 34. I play baskeball 3 days a week. But when i am flaring, i have no energy and cannot play.

sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted Yesterday 8:01 PM (GMT -7)   
Hmmm, I get really tired too! It's because my b12 and iron levels are so low, I'm very anemic. Have you gotten your blood tested to see these things?
And have they done any conclusive crohns tests? Like a colonoscopy? That's how I was diagnosed after initially going for an ultrasound because I had so much pain in my lower right side. They said it looked like I had crohns from the ultrasound but that's not an acceptable diagnostic test for the disease so about two days later I got a colonoscopy and started treatment immediately after.

The confusing thing about your symptoms is that the intestinal ones just went away! But what you do have sounds like alot of things I've experienced (alot of fatigure, I get nauseous often). I've also never had blood in my stool.

I'm not sure what to say though! I think inflammation can be present without symptoms though, so... I guess I would say go back to your GI and discuss this with them. Good luck!
female 19, diagnosed crohns december 2008
erythema nodosum
currently taking 40mg prednisone, then imuran or remicade when i taper
feeling scare about side effects but will be happy to feel better :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted Yesterday 8:02 PM (GMT -7)   
Everyone's CD symptoms can vary quite a bit...have you been tested for c.diff? It's a bacterial infection in the GI tract which can be brought on by use of antibiotics and ironically needs a specific type of antibiotic to clear it up....as I mentioned before, flagyl is one antibiotic used as well as vancocin to treat C.diff!
:)

Silverandblue18
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted Yesterday 8:42 PM (GMT -7)   
Thank you for your quick replies and for your help! It's unfortunate that some of you have/had the same symptoms as me, I was holding out hope that I may have something less severe than Crohn's...

To answer some of your questions; I have not yet had a blood test, except for an allergy test (so now I know what foods to stay away from). What blood tests are usually done? I am seeing my doctor tomorrow, so I can talk to him about them then.

For those who have heavy fatigue like me, what did you do to handle it? Also, were/are you able to keep working with the fatigue onslaught when it's at it's worst? If so, what do you do to get enough energy to get through a full time work week... or through the day even? Also, I hear that a lot of times the early stages of Crohn's can be unusually intense, is that what you've seen?

pb4, c.diff sounds like what I had before the pain and the big "D" went away. I took very specific Antibiotics to handle it, and the symptoms sound identical. So good call... I had that :)

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted Yesterday 8:49 PM (GMT -7)   
Silverandblue,
 
Personally, I would get one heck of a good work up to see what's going on with you.  The fact that you're getting worse and not better is certainly justification to have a COMPLETE physical until the docs determine for sure what exactly is wrong.
 
Also, not sure what you mean by a "hardening" intestine, or if you're referring to your large intestine or your small intestine.
 
Good luck!!
54 year old female;
 
Have had Crohn's of terminal ileum for 10 years.   Small bowel resection (my first) on 7-30-09.  Monthly B12 shots.
 
On Humira since Dec. 2008.  Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  


Silverandblue18
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted Yesterday 8:53 PM (GMT -7)   
Sickandlucky, I have not been tested for low b-12 and iron levels, but am scheduled to get a b-12 shot tomorrow so I'm hoping that it helps, and I've also been taking b-12 supplements daily. I will talk to my doc about blood tests.

I have not yet done any conclusive tests such as a colonoscopy. I have two reasons: 1) I lowered my insurance to only "catastrophic" coverage a few months before this all kicked up because my rates doubled and I wasn't ever getting sick so it wasn't worth it... oops! Since my insurance isn't covering any of this I have to really watch my expenses. and 2) I've been trying to avoid having anything inserted in that general area... haha. Are any blood tests definitive or do I have to get a colonoscopy? (stick me with needles all you want... I can handle that! lol).

Silverandblue18
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted Yesterday 8:57 PM (GMT -7)   
Blossom, as for the "hardening" of the intestine/s I'm not sure exactly what my doc meant by that, at the time I didn't know to clarify beyond that. So, tomorrow I will find out more precisely. Also, I guess I should probably spring for a complete work up and narrow this down. Thanks!

farcry
Regular Member


Date Joined Oct 2009
Total Posts : 25
   Posted Yesterday 11:00 PM (GMT -7)   
I'm sorry to hear of your unfortunate situation. If I were you I wouldn't rely on blood alone and if you're doc is worth is degree then he won't either. Blood in general (CBC, ESR, CRP), usually provide the doctor with info such as "you have active inflammation" or "you're anemic", both of which could point to Crohn's...or maybe something else. Without other tests you don't know.

Promethesus has a blood test called IBD Serology 7, which I think is rumored to be 94% accurate. It examines 7 markers and how they relate to each other in the blood. But it's really controversial, especially in patients that haven't been diagnosed with IBD. Also, these markers can mean other things and they're still finding out that some of the other things the markers can mean. Also, it's fairly expensive and some insurances won't cover it. However, if you got tested positive with it then unfortunately there's good odds you have it.

I can understand and sympathize with you on the expense part of the colonoscopy. However, in all honesty the test itself isn't all that bad and chances are you'll never even know they did it. The worst part is the prep you have to take before. But if you think you could have crohn's, it's worth going through.

Also, there are other tests your doc might order to further check your small intestine. They are small bowel follow through (SBFT), CT Enterography, and the pill cam.

I'm very sorry to hear you might have Crohn's and hope you get good news.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted Yesterday 11:12 PM (GMT -7)   
The only sure diagnosis for Crohn's is a colonoscopy with biopsy. They examine the biopsy for granulomas (altered cells) which show up in Crohn's. Some people are unlucky and the biopsy misses the altered cells and so they must wait for another try. There are also several other illnesses which resemble Crohn's. Addison's is something that you might ask about, since it is an adrenal problem and might cause your fatigue. One other test to get - ask for a vitamin D blood level test. If you have chronic low vitamin D, it causes fatigue.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted Yesterday 11:25 PM (GMT -7)   
If crohn's is affecting the small intestines, which the colonoscopy cannot reach then upper GI tests will be needed to help DX crohn's. colonoscopies are great for DX crohn's affecting the colon and/or rectom or UC.

:)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted Today 7:32 AM (GMT -7)   
I agree with PB4. the colonoscopy is not always conclusive if you have more small bowel involvement. It is a good starting point, but it isn't the be all to end all. As for blood tests you really need to get some complete bloodwork done such as CBC, Sed rate, B12, Vit D, Liver function tests etc. You will more than likely need to get some tests done, sorry but you really need them done. Tests such as the colonoscopy, Small bowel follow thru, just to name a couple. Good luck and do keep us posted.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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