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Is it Crohn's?

Hey all. Im 30 and feel as if im 90. I literally feel like im in a strangers body. Basically I had severe nausea, cramps alternating between all over feeling like gas pain or to the right of my belly button (more dull ache) diarrhea no blood
My symptoms were getting worse and I started to lose weight and feel unwell. I sought medical attention and got a endoscopy and colonoscopy done. They found 3 very small ulcers in the terminal ileum. Took biopsies and all came negative. The specialist concluded IBS of course and said come back in 6 months if I want.
anyone had experience? ?
Im exhausted. Feel like a crazy paTient
help!!!!!!
 
OK, we're patients here, not doctors. But it seems even your specialist isn't yet in a position to make a diagnosis, other than "not bowel cancer". "IBS" isn't a diagnosis, it's an etiology, i.e., a set of persistent, collective symptoms that is described under the title "Irritable Bowel Syndrome".

The terminal ileum is the place where the small bowel widens and becomes the ascending colon, on the right side of your abdomen. The colonscope goes in at the anus and can go right around (from left to right) until it reaches the caecum, which is a pouch that collects the stuff from your small bowel, on its way to the colon. The stuff (called chyme) is squirted into the colon by means of the ileocaecal valve at the top of the caecum.

So it seems that's the area where the scope saw your ulceration. If that hasn't cleared up, you'll keep getting the symptoms in that place. That "dull ache" could be a partial blockage caused by those ulcers.

There's a lot more testing to go through before you get a conclusive diagnosis of something. The likely contenders will be ulcerative colitis (UC) or Crohn's disease. A Crohns diagnosis comes if you have chronic inflammation sites in the small bowel alone or both small bowel and colon, and/or in the mouth, oesophagus, or even other parts outside the digestive system. If you have persistent ulceration only in the colon and rectum, the diagnosis could be either UC or another variant known as "Crohn's colitis". Both conditions, along with diverticulitis, come under the umbrella of "Inflammatory Bowel Disease" (IBD). Note, IBS does not mean IBD.

To look at what's happening in your small bowel, you could be sent to a radiologist for a CT scan, an MRI scan or an enterography. During a diagnostic workup you would have repeated blood tests to look for (and monitor) markers for IBD. The two most interesting markers are CRP and ESA but white cell and red cell counts and creatine level are usually included, as they can be interesting, in combination with high levels of CRP and ESA.

So -- when the specialist decides to get going on a diagnostic workup, there's a lot of procedures to go through. How long before you can make that follow-up appointment? From the information you have given, it seems you need to be seen sooner rather than later. Were you given any medication to try to reduce/forestall inflammation? Any directions as to what to eat/avoid?
 

valleysangel92

Moderator
Staff member
Hello there, welcome to the forum

I am sorry to hear that you are feeling so rotten and that you don't have a proper diagnosis yet.

I agree with everything said above, there needs to be more testing done. One colonoscopy is not near enough to rule out Crohns disease as Crohns can be anywhere in the digestive tract. The colonoscopy can only view the colon and a very small section of the terminal ileum. This means there is a very large amount of digestive tract that is not viewed where Crohns could be lurking.

The other difficulty is that inflammation from Crohns does not necessarily show up in blood tests. My bloods usually come back fine until I'm very sick so having negative bloods is not a guarantee that you don't have inflammation.

I would advise seeking some imaging, preferably an MRI so that they can get a look at the other parts of your gut. Alternatively, you could ask for a capsule endoscopy which is where you swallow a small camera with its own light source. The camera then takes pictures of your intestines and is passed through naturally. This is a good way of getting a look at the surface of the cut, but you would ideally need to either have imaging or a dummy capsule first to ensure that you don't have any narrowing where the camera could get stuck.
 
Thanks for the replies.

My specialist did not put me on any treatment plan. He gave me a low fodmap diet to follow which has helped. I'll add the tests ive done within the past 6 months: endoscopy and colonoscopy. Stomach xray. Upper and lower abdominal ultrasound. Transvaginal ultrasound. All bloodwork. Stool samples to check for occult bloood and parasites.
I asked the specialist why he hasn't put me on meds. He advised these tiny ulcers could be non specific.
I'll also add I feel better than I did in previous months but im waiting for my next flare up to set me back again. I usually get them when im ovulating.

I know this isn't an easy disease to diagnose but persistent symptoms for close to a year?? Somethings gotta give.
 
Fortunately, it can take YEARS to know for sure. It's frustrating. I've been there. Try to relax. If you are not comfortable with your current GI, find a new one. Hang in there. Time will tell.
 
Thanks for the support and encouragement guys. I'm really glad I joined this forum. A lot of great info!

No one around me has ANY Stomach/digestive issues so its nice to know other ppl like me exist =)
 

David

Co-Founder
Location
Naples, Florida
Welcome to the community. I'm sorry to hear of your struggles.

The two tests I would request next would be a fecal calprotectin and vitamin B12. Both of those can provide a lot of insight into what you're experiencing.

All my best to you.
 
How do ppl with digestive issues have social lives? Summer is coming and camping, vacations etc are being brought up. I am so terrified of having a flare i am isolating myself which ppl don't understand. Anyone experience this?
 
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