Do I really have Crohn's?

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Regular Member

Date Joined Aug 2007
Total Posts : 36
   Posted 4/1/2009 3:55 PM (GMT -7)   
I am male in my early 30s. I was diagnosed with CD back in March 2007 and subsequently had a hemi-resection of the colon. Per my GI doctor, the surgery was necessary due to numerous strictures and fistulas. Since then I have been on 6MP, one a day in the evening.

I see all these postings and reports that those with CD have constant diarrhea and joint aches. But, I don't have these symptoms.

What I do have is cramps (more like pain) in my intestinal area where it feels like something is stuck or not digesting. When it gets really bad, I end up vomiting then after about an hour the cramps go away. These events happen once in a while, but definitely not as frequent before having the surgery.

I have been careful of what I eat, mainly just trying to eat healthy.

Just venting, because sometimes I feel I have been mis-diagnosed.


Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 4/1/2009 5:37 PM (GMT -7)   
I think the thing that is misunderstood a lot is that there is a vast range of CD patients. There are some patients who have one or two flares and then can basically ignore it for the rest of their lives, then there is the other extreme of patients who are on disability because they have trouble functioning on even the most basic of levels. Of course most patients are within that spectrum. A lot of the posters here are looking for support because they are having trouble with some aspect of their disease. The CD patients who aren't having daily trouble are out living life.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 4/1/2009 6:05 PM (GMT -7)   
I can understand you wondering about your DX but it's important to know that there really are no 2 exactly alike when it comes to this DD, the fistulas sorta ring a bell for CD though, you can get them from diverticulosis and from injury too but your vomitting and ab cramps along with having fistula issues can still make you a candidate for CD, ad since your were DX, I'm assuming via colonoscopy and other test, that would help confrim it as well.

You could always get a second opinion if you feel you were misDX.

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

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 4/1/2009 6:42 PM (GMT -7)   
I don't have diarrhea, either.... I tend to have constipation.... As well as pain (sometimes, it's a cramping pain, but not all the time)... I agree with Pb4, though... It definitely sounds like a case of Crohn's to me...
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.

Regular Member

Date Joined Mar 2008
Total Posts : 382
   Posted 4/1/2009 8:06 PM (GMT -7)   

Hi sejiinro, I do not have diarrhea or joint pain, nor do I have any cramping. I do have a stricture in my colon and have had enough tests that I do not question the diagnosis of Crohn's. I did occassionally vomit with bowel movements before being diagnosed.

From my limited experience it sounds like you could have some narrowing. I would have thought they would have done a positive diagnosis from your first surgery? I know two people who had surgery 20 years ago and no problems since, others can go for quite some time and others have symptoms return quickly.

55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009

Regular Member

Date Joined Mar 2009
Total Posts : 24
   Posted 4/2/2009 3:05 AM (GMT -7)   
dead on Zanne.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/2/2009 6:22 AM (GMT -7)   
Hi agree with Bammer, it sounds like you might have some narrowing going on again. It sounds like you are having partial obstructions. I would definetly talk to your GI about this as you don't want to let it go on too long or it could make matters worse. Good luck!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Aug 2007
Total Posts : 36
   Posted 4/2/2009 6:59 AM (GMT -7)   
My goodness, thank you for all the comments. Really, I appreciate it.

Yes, I have had a colonoscopy several times, about once a year now, and the GI concludes that I have CD. Also, yes from the surgery, some tests were done, and the pathologist concluded as well that I have CD.

It's just frustrating some times, when you think everything is fine for a few months and you begin to lax on certain things like diet, stress level, etc...then low and behold a flare up happens. It's just so frustrating...

Veteran Member

Date Joined Mar 2006
Total Posts : 1169
   Posted 4/2/2009 9:13 AM (GMT -7)   
Fistulas and strictures aree definite indicators of Crohns. And if the biopsies showed Crohns that is pretty much the clincher, as depth of inflammation in the bowel wall (which can really only be determined bia biopsy) is quite different between Crohns and ulcerative colitis. Finally, trying to track a diagnosis via symptoms alone is not useful, as other posters have noted Crohns presents in so many varying ways in different patients and even in the same patient from time to time. I would say you are beyond 99% probability that your Crohns diagnosis is accurate.

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 4/2/2009 10:05 AM (GMT -7)   
Sejinro, I've never had an issue with diarrhea either...used to have constipation but seem to have that problem fixed currently.  I don't have a lot of symptoms that people on here have.  My Crohn's is more mild than some of the people on here and has been in remission for a couple of years.  But, I can tell you that doctors don't give the Crohn's diagnosis easily (at least they didn't used to) - it took 8 years for me to get diagnosed.  So, if they say you have Crohn's, I think they are probably pretty sure about that.  The meds and surgeries that we have are nothing to play around with, so they aren't going to pick that diagnosis on a hunch.  If you still question it, see another dr. for a second opinion.  My GI has patients that never have any abdominal symptoms and were actually diagnosed after complaining about stuff like eye, it's very different for everyone.   

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

Veteran Member

Date Joined Nov 2005
Total Posts : 1340
   Posted 4/2/2009 12:18 PM (GMT -7)   
I'm like you. No D, rarely C. But I have strictures and get blockages. No doubt I have CD. I get the cramp pain and vomiting like you when I have problems with my stricture. There are different types of CD, plus I think it can present differently over the years.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.

Regular Member

Date Joined Aug 2007
Total Posts : 36
   Posted 4/8/2009 9:35 AM (GMT -7)   
Thanks so much for all the feedback.

For the cramp the pain horrendous? It's really bad for me. I mean extreme main. Once I vomit, the pain goes away after 30 minutes or so. There are have been times though when the cramping pain just goes away after 3 or 4 hours. I noticed if I drink lots of water (I mean lots), then the cramping pain goes away without having to vomit.

Regular Member

Date Joined Aug 2007
Total Posts : 36
   Posted 4/8/2009 11:12 AM (GMT -7)   
Also, if we can correlate the type of food to a flare long does it take? Meaning, if I ate a hamburger for lunch (and a hamburger causes a flare up), how long do I have until I get pain. Or this is very individual based? For me and maybe others, this time lapse (or average thereof), will help in deciphering which foods cause flare ups.

Veteran Member

Date Joined Apr 2006
Total Posts : 1885
   Posted 4/8/2009 2:03 PM (GMT -7)   

When my daughter had a stricture and was in flare, she vomited and had cramps that came in waves. When the doctor stopped by, he said to her, "You look pretty good," but the nurse spoke up and said, "Just before you walked in, she was writhing in pain."

So, yes, the pain from a blockage/partial blockage is indeed really bad.

Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 4/8/2009 3:06 PM (GMT -7)   
When I was flaring, I got the "stuck" feeling too a lot, and I vomited a lot too, except I did get the diarrhea (the constipation came after the diarrhea finally went away..I can't seem to ever just be normal!) This disease is quite complex though, seems like no 2 cases are alike.. But your diagnosis does seem pretty certain to me :) Hang in there!

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 4/8/2009 8:04 PM (GMT -7)   
Seji, this vomiting is not a problem I have, my Crohn's tends to be more extraintestinal I think - but I can tell you from experience, the only way to relate trigger foods to symptoms is to keep a detailed food diary, and really become familiar with how food is digested in your gut, what sorts of things different foods are high in etc.
It really is an education, all by itself ! I manage my CD almost exclusively by diet, so I have spent more time thinking about what did what when than I care to remember; some things are as we expect fairly immediate, others can take a day or more, or have a gradual effect that eventually reaches a critical level. The latter, you will find, are usually the ones you relax on, and get away with, so start eating more.... yeah nono
The good news is, once you have kept a food diary for a while, you do it automatically in your head, and sorting out the triggers becomes much easier, even if you are really forgetful like me. And it can pay off big time.

Regular Member

Date Joined Nov 2008
Total Posts : 392
   Posted 4/9/2009 12:52 PM (GMT -7)   
Snohare has just started this interesting thread about what kind of food that helps for him/her. Here's the link and a great deal of exciting theories about it, hope it's ok sno!

I have almost the same kind of Crohns as you, except mine is in the distal jejunum, a 1/3 part before we reach the terminal ileum. Those who have Crohns in the terminal ileum and in the colon often have the biggest D's. Those of us having it in the distal jejunum (some few procents of all), often get's serious complications as partial obstructions, obstructions or full blockades, which could lead to other serious complications like perforations of the small intestines / mega colon and sepsis. I don't mention this to scare you, but all of us having obstructions should educate ourselves to find out what this could lead to if we prefer to stay home when we should go to the ER. I know that obstructions also can be the case if you have an imflamed spot / area in other parts of the guts, and the risks are the same even then. I don't have so much diarrhea, but boy, I am able to vomit and cramp! It can go on for 12 hours or more and when the blocade gets away, I often have nothing left to vomit. Not even bile. But you're right, the vomiting stops as soon as the obstruction is gone.

What triggers obstructions? If the intestine is narrowed, due to an inflammation, some of the food we eat are dangerous triggers. I can't have vegetables, some fruits, bananas (even ripe ones are possible triggers), I can't eat meat when the inflammation is at a higher level, just poultry. I have to avoid berries like strawberries. I have to chew my food a lot, peel my fruits, eat slowly and relax while eating. All of us have different triggers, brocolli is one of my worst enemies. You have to find your triggers, and then learn to avoid them. Write a food diary?

Post Edited (BeeSting) : 4/9/2009 1:55:28 PM (GMT-6)

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 4/9/2009 5:11 PM (GMT -7)   
idea After reading that, I've suddenly come over all thankful. eyes It's the last paragraph that does it, not the fact that I'm now an "authority"... wink I think dear departed Daisy could have been a lot crueller to me. yeah
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