What to do?

[Troubled]

Hello, all! Had a ruptured appendicitis in 2014 with a crohn's scare showing some inflammation on a CT scan. Long story short, docs at the hospital were all saying crohns, but when the colorectal surgoen had me open, who is very well regarded in his field, he said my bowels looked "completely normal", and that Crohn's has a "distinctive look" which I didn't show.

Since then, my abdomen's been giving me some problems that come and go. Some sharp pain, which is generally fairly mild. Eating gets rid of them for a few hours. The worst are headaches...almost every day around 10am-12pm get some intense pressure headaches. Get occasional upper back pain. No symptom is disabling, though, and I can go about my business. Sometimes the symptoms are gone for days, and I assume all is fine and forget about it, but they seem to come back in differing combinations. Also have hemorrhoids from time to time that flare, but have had those for years prior to this episode.

I've been back to the colorectal surgeon twice. I asked him each time about Crohn's and he reassured me that he doesn't think I have it. Not sure if now I should see a different GI or just go to a general practitioner, and where to start looking for one.:sign0085:

 

[Scipio]

Hi Troubled,

My Crohn's was also discovered thanks to a ruptured appendix. My advice is to consult with a GI who specializes in IBD if there is one nearby. Where do you live? I may be able to suggest some at a nearby hospital or medical school. There are a number of tests and procedures a GI can run to help with a definitive diagnosis that go well beyond a glance from a surgeon.

 

[ronroush7]

You know your body better than anyone else. Seek a second opinion.

 

[eleanor_rigby]

I went through the exact same thing. Ruptured appendix resulting in emergency surgery. When pathology analysed what was removed during surgery they stated "no evidence of crohns and this is a ruptured appendix". I felt brilliant after the surgery for around 3 years then started getting very mild abdominal pain, which I ignored. Then I started getting stomach cramps and so I went back to my GP who referred me back to a GI. I had a colonoscopy which showed ulcers at the beginning of my small bowel and my small bowel had narrowed. I wish I had been seen sooner. I have been on medication now nearly 6 months and the pain has seemed to just worsen in that time with no end in sight. I am terrified I am going to need more surgery. I wish I had just had a followup colonoscopy years ago like my GI wanted to do. But I was worried it wouldn't have shown anything as I felt so good so thought it would be better to do it if/when I ever got symptoms again. By this time it is just too late and it's a real challenge getting things under control. This disease can be doing damage without you realising. I recommend getting a colonoscopy to rule out any risk of Crohn's disease. One month before my colonoscopy I had a CT scan which was completely normal so the colonoscopy really is the most reliable test you can have.

 

[Scipio]

In my case the pathology report of the ruptured appendix showed only appendicitis, but it did say that the appendix tissue was "disrupted" (the term the surgeon used to describe it was "shredded"). The post-appendectomy radiography showed thickening/inflammation of the terminal ileum near the appendix. That was dismissed at the time as residual local inflammation due to the appendicitis. But a year later I came down with severe anemia, apparently due to internal bleeding from the site of the Crohn's inflammation in the terminal ileum. After some emergency blood transfusions I was referred to a GI who eventually diagnosed Crohn's. So I've been treated for a relatively mild case of Crohn's ever since.

It's been 5 years now, but I think I had the Crohn's for at least a decade prior the appendicitis, maybe longer. I had mild pain in the area and occasional fevers for years and years prior to the diagnosis.

 

[Troubled]

But a year later I came down with severe anemia, apparently due to internal bleeding from the site of the Crohn's inflammation in the terminal ileum.

Did you see any blood in your stool?

 

[Anonymous77]

You cant tell crohns macroscopically, they have to look for granulomas in the mucosa with a microscope. I had a colonoscopy and it looked perfectly fine, i assume it still does - but on microscope there were indications. Get them to take biopsies and confirm or deny it.

 

[Anonymous77]

Well id take comfort in the fact that if it all looks normal then no damage is actually being done, but it doesnt mean you dont have crohns mildly under the surface.

 

[Troubled]

Well id take comfort in the fact that if it all looks normal then no damage is actually being done, but it doesnt mean you dont have crohns mildly under the surface.

Thanks...Yes, the surgeon's opinion was compelling; for this reason I always just felt like my gut was being quirky since the surgery. But I'll get it checked a.s.a.p. by a GI.

 

[Anonymous77]

Well by the same token symptom severity doesnt always correlate to actual severity - i lost a lot of weight, but otherwise was just tired all the time with very rare headaches and bleeding. But on capsule endoscopy i had ulcers throughout my small intestine. People on here seem to have much much worse symptoms with less bowel involvement. You have only to gain by going along and getting peace of mind one way or another.

 

[Scipio]

Did you see any blood in your stool?

No, no visible blood and no black, tarry stools. The only thing even slightly abnormal was somewhat darker, greenish stools. But I had been seeing that for years as a result of taking iron tablets.

So it was a real mystery to me where all the blood suddenly went sufficient to induce severe anemia. The GI theorized that it was a combination of Crohn's-related malabsorption of dietary iron and a slow, seeping loss of blood from the IBD lesions.

 

[Troubled]

UPDATE: GI doctor ordered an ultrasound, which came back normal. Next step, I'm requesting a colonoscopy, and then an endoscopy.