Can this be crohn's?

I posted the same on UC forum since I was diagnosed with UC but now I discovered I have ulcers in my small intestine and was wondering if people on this forum can give an advice.
Diagnosed in 2020 with UC – “proctosigmoiditis up to 25 cm, small cecal patch of erosions and erythema around the appendiceal orifice”. Was put on Entyvio in 2 months after was diagnosed. Remission was confirmed by colonoscopy at the end of 2020. Both endoscopies in 2020 showed stomach erosions with blood stain. Kept having a lot of left side pain. Went through a lot of testing (thanks to this forum for advice with tests) last year and finished 2021 with repeated colonoscopy & endoscopy which showed UC in remission and erosions in my stomach. Other tests only showed fecal fat, the rest was all negative.
Finally I had a capsule endoscopy done this year which showed 2 small nonbleeding ulcers in mid jejunum and 2 nonbleeding erosions in distal jejunum and proximal ileum. The doctor added: These lesions were sharply demarcated and likely due to use of corrosive medication.
These results floored me. I told my GI I baby my stomach due to erosions. I am on PPI and a very strict low acid diet. I do not take any medication. If needed I will take Tylenol rarely. I take vitamin D and Citracal Slow Release 1200. My GI completely disregarded what I said. He said this is not Crohn’s as Crohn’s ulcers have a shape of a snake and not just small individual ulcers.
My clothes are hanging off of me. I eat 3 times a day, no fat, no spices of any kind, no raw food. Everything has to be soft and overcooked. If I eat a bit extra then I will go additional time to the bathroom. More I eat more I poop or more comes out. Speedy transit time. No diarrhea though. I am in pain every day, from mild to a strong pain. The pain keeps me awake at night. Tums ease up the pain under my left rib but not the pain on my left side which runs like a straight line, some pain by my belly button to the left, pain in my pelvis like it is my colon is hurting, belly pain. It has been almost 2 years.
If the entyvio is working why is there ulcers in the small bowel but not colon? Is this Crohn’s? Is there any other tests that can ‘prove’ if this is Crohn’s? I saw people mentioned Promethus serology test on this forum. Do you think it is worth to ask for? Not sure if insurance will pay though. Has anybody experienced anything similar?
Also, I am very confused why my stomach is not heeling. I have been rotating among different PPIs, h2 blocker, sucralfate. I tried almost all of them. And now ulcers in the small intestine. I am very upset. I definitely will get a 2nd opinion. Looking forward for any advice you all can offer.

Hi Charlie, I had more tests to check my esophagus and stomach but they were negative. The 2nd opinion doc said there is a thin line between UC and Crohn’s. I don't have anything new to report. I keep suffering from everyday pain. How about you?

I am stable but like you have not improved. My blood markers seem to indicate that I am in remission but I too have constant left sided pain and some other joint issues which no doctor seems sure how to diagnose.

Are you considering changing biologic as scifigal suggested? What are your CRP and faecel cal protectin scores during this period?

Similar to you in that respect.

Do you believe the ulcers in the small intestine are causing your left sided issues? And that Entyvio is treating the colon but not the IBD higher up?

Beave, thank you for the post. This is helpful. I already had all tests that exist out there to check everything else including pancreas and gallbladder. I do have certain food intolerance which I avoid. I am on low acid diet. I avoid all spices including salt.
I asked two GIs about the Prometheus test, both said the test is not accurate. I quit PPI back in May. It gave me a horrible heartburn.
Charlie, I think I have pain from my stomach and intestines. Sometimes tums or rolaids help and sometimes don't. I thinks eventually I should have endoscopy again to rule out if my stomach healed. I feel like my intestines are "damaged goods" at this point and do not function properly.

It took a long time for me to get diagnosed, and even after I did, there was still a lot of doubt for a number of years.

In 2006 I was hospitalized twice. A CT scan at the time showed several regions of inflammation in my small bowel (jejunum and ileum), but terminal ileum and colon seemed ok. We tried to do a capsule endoscopy while I was in the hospital but it failed - it sat in my stomach for several hours until the battery ran out! So a few weeks later we tried it again. By then I was feeling OK with no GI symptoms and on no meds (still not diagnosed). Capsule found several small non-bleeding ulcers in ileum just before terminal ileum.

In the last 20 years, I've had six or seven colonoscopies, six or seven upper endoscopies, and five or six CT enterographies or MR enterographies.

A couple of the colonoscopies came back completely clear, even with clear biopsies. One found mild inflammation in transverse colon. One found mild inflammation in right colon. One found mild inflammation in left colon. And one found mild inflammation throughout my colon.

As for the small intestine, the CT showed several mildly inflamed loops of jejunum and ileum. An MRI showed mildly inflamed terminal ileum. A couple years later MRI was clear. Then another showed mild inflammation again. Then another was clear.

As for the upper endoscopies, first couple showed mild inflammation in stomach. Then a couple were clear. Then one showed mild inflammation in stomach and moderate inflammation in duodenum. And then another showed duodenum clear and mild inflammation in stomach.

As you can see, my Crohn's is mild, but it comes and goes in practically every region of the GI tract - stomach, duodenum, jejunum, ileum, colon. It pops up in one place, then goes away there and shows up in another place, then shows up somewhere else. It seems to just keep moving around and coming and going. For most people it tends to hit one or two areas and stay there and hit those areas hard. For me it has been fairly mild but it has affected everywhere along the GI tract to a mild extent.

Hi Charlie,
My symptoms have varied over the years, sometimes non-existent and sometimes quite obvious.

1987-88: Nausea, lack of appetite, weight loss, weakness/faintness for about 2 months. Went away on its own. Saw several docs who said it was either virus or stress.

1994-95: Same thing, followed by a few weeks of diarrhea. Again went away on its own. Saw several docs who said it must be stress.

2001-02: Upper GI pain, nausea, gnawing/burning pain in stomach, off and on nausea and trouble eating. Doc said it was acid reflux and put me on PPI, which didn't help.

2006: Sudden severe onset of diarrhea, lost 20 pounds in 10 days, hospital for a week, put on flagyl, had allergic reaction, put on prednisone and felt better than I had felt in years. Big clue there. Also right at this time my brother was diagnosed with UC out of nowhere. I started reading about UC and then Crohn's and wondered if that is what I had all along.

2006: A few months later, back in hospital with diarrhea and now vomiting several days straight. Put on IV steroids for a few days. Docs finally start looking for Crohn's signs, at my insistence. CT scan showed inflammation in small bowel, capsule endoscopy showed ulcers. Eventually diagnosed with Crohn's early 2007.

2010-11: Some on and off bouts of diarrhea. Took a couple of courses of Entocort, which helped.

2021: Three months straight of upper GI pain, the same burning/gnawing stomach pain, waking me up every night. Scope and upper endoscopy showed mild inflammation throughout colon, mild inflammation in stomach, moderate inflammation in duodenum.

In all the in-between years, no *obvious* symptoms, but always felt run-down compared to my peers.

And yes, I also have been diagnosed with UCTD - undifferentiated connective tissue disease. I had a high positive ANA test in 2006 when we were trying to figure all this out, but it got blown off. A few years later I got it retested by another doc and it was very high positive. A rheumatologist and neurologist ran a bunch of tests and made the diagnosis. Manifestations include fatigue, night sweats, mild Raynaud's disease, migraines, sun sensitivity, and heat sensitivity (get sickly and break out in hives when I get too hot or when out in strong sunshine).

Hope that helps!

Post Edited (beave) : 8/20/2022 10:16:50 PM (GMT-7)

I've never had blood. Had lots of stool tests that were always negative for infectious agents but often positive for excess of white blood cells, but no blood.

I don't know why they never thought of IBD as a cause. My guess is one reason they never considered it is that the docs always started with blood tests, and my CRP is always ZERO. So right at the start (I'm guessing) they figured it couldn't be IBD. Even when I was in the hospital, my CRP was zero. I - and hopefully a few doctors! - later learned that some people simply don't produce the CRP protein, no matter how much inflammation they may have.

In more recent years with the use of fecal calprotectin, I've had a couple of mild-to-moderate positive results, a couple of borderline results, and a couple of negative results.

I had diarrhea with blood. This is how I was diagnosed with UC. I had bleeding erosions in my stomach. Who knows what I had in my small intestine at that time. The recent discovery of non-bleeding ulcers in my SI were done while on Entyvio. Maybe I have only 2 small ulcers because Entyvio is partially helping with SI. Nobody did any classification for me and I saw doctors in IBD centers in big research centers. I guess it is not important.

Compared to where you are now beave on Stelara (which im assuming is a good place) do u feel better than u felt in the years between ur bad times. I guess im also suggesting that during the in between years do u think you were in full remission or do u think u were still flaring somewhat with very quiet symptoms. This might be interesting answer for Gloria's own current situation.

I take wormwood capsules that put more acid in your stomach to keep the Crohn's at bay. Bacteria can't form when there's a lot of acid. I got Crohn's through food poisoning so wormwood is basically for food poisoning.