Pain, ulcers - looking for 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 an 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.

Gloria,

A few thing here:

1) Did you have a CT scan before the capsule endoscopy? If so was the CT scan clear? I just say this in case the ulcers are something very new which is possible.

2) Also I have never heard of CD being ruled out for the reasons you gave. Were the ulcers biopsied? A biopsy is the ultimate test here.

3) Is it possible the pain under you ribs is not directly related to the stomach ulcers especially since these are not bleeding. Could you for instance have a touch of chostchondritis that is causing your rib pain which is common and despite what you might hear from others is actually one of the more comment forms of extra intestional rheumatic IBD.

4) What is your CRP and Sed Rate during all of this? Are you having any other issues that might imply some element of a flare is happening? Joint pain? Eye issues? Skin issues? Even mild events like this.

D

Thank you for all your replies.
quincy, I already have a doctor for the 2nd opinion per suggestions on this forum last year

damo123,
1)I had CT done last year. My GI said CT would never show this, only capsule endoscopy could reveal.
2)biopsies are not taken in small intestines with capsule endoscopy. When I had endoscopy and colonoscopy every time biopsy was taken and was clear.
3)I don't have ulcers in my stomach but erosions with blood stain. It is erosive gastritis in the antrum of the stomach. I have non-bleeding ulcers in my small intestine. This is not costochondritis since tums help with the pain. Eating also helps right away but then a pain is back within 45-60 mins after food.
I used suprep for my last colonoscopy. That stuff was a killer. My throat was on fire from it. I could just imagine what it did to my stomach lining.
4)My eyes burn, but it is from not sleeping. If I am rested (which happens rarely) I am ok. Long time ago my PCP told me that this is normal due to not getting enough sleep. I am due for the blood work this month.

Seeker275, I agree. PPIs are very bad and have a lot of side effects. But according to studies (whatever I could find on the web) they don't cause ulcers in small intestine. I hate taken them. I want to taper off but if the intolerable pain returns I don't have a choice.

CCinPA based on what I read PPI’s can aggravate or trigger IBD symptoms. But then so do antibiotics by disturbing the gut biome and I guess in that way PPI and antibiotics are similar. But then sometimes one has to be on them anyways. It is the long term use that I would be wary of. I have been on a PPI for 30 days two years ago when covid had just started over infectious symptoms that triggered acid reflux . In that time while taking the PPI had periods of blurry vision and the feeling that they were affecting my joints and aggravating my gut . I gave them up even though the doc (not my usual GI since I was stuck in another country) had prescribed them for 3 months saying it was perfectly safe. Thankfully my acid reflux symptoms did not come back when I abandoned them and my other symptoms settled on their own. I suppose if you are not noticing anything with long term use don’t worry. Perhaps it is a tolerance thing. Just something to be alert to incase you start noticing weird symptoms so that you can take action then.

Thanks, Seeker. I've never noticed an effect on my UC. Will ask my doc about being on it for so long. I posted on the GERD forum to see if anyone there was on a PPI long term like this.

Wrote this on silent gerd/reflux back in 2018.
Oldmike
Look into something called silent gerd. It is not really the acid causing a problem, it is the pepsin
digestive enzyme that comes up into your throat. It probably can be controlled with H2 blockers or PPI, but
if not the pepsin is deactivated by high ph, such as baking soda. Another way to possibly stop it is
Gaviscon, which floats a barrier aglinic acid gel on the stomach contents.
Don't take my word for it, research silent gerd/silent reflux.
The only way to deactivate pepsin is gargle with baking soda dissolved in water, perhaps swallow
some. If this is really the problem then your throat is being digested, this stuff also gets aspirated
up into the sinus and perhaps can creates extra mucus. The top of the digestive tract cannot protect
itself from pepsin.
Old Mike

Did the blood work. All is within range including CRP, ESR, iron, B12 and magnesium.

Is there a test to test pepsin in the throat or esophagus?
Oldmike, Does it have to be advanced gaviscon or can be just gaviscon? does it have to be liquid or tablets will also work?
I already tried sucralfate liquid with no success (helped only for 2 weeks out of 10 weeks taking it). Doesn't sucralfate work the same as gaviscon?
If I mix baking soda with water how concentrated the mixer has to be. For example, 1tsp per 16 oz of water? I am concern with concentration if I decide to swallow not to gurgle. I have been gargling time from time and it works well for a sore throat.

Has anybody had a test to test the stomach acid? Is it worth it? I am not talking about Bravo ph test. Google found https://www.mountsinai.org/health-library/tests/stomach-acid-test I am not sure if this test can be performed at any GI office as my doctor said they test only acidity in the esophagus.

Thank you everyone for feedback.

Gloria -- I found this link about baking soda for acid reflux. It lists how to dose it. I have high blood pressure and the last thing I need is more sodium so I won't be trying it and it's not supposed to be used long term.

https://www.healthline.com/health/gerd/baking-soda#side-effects

For what it's worth ... I talked with my doc on Friday about being on ppi's long term and he said that the biggest concern is if it would start depleting my calcium levels but they have always been ok (he checks every 6 months).

I am trying to taper off PPI. I have cut PPI dosage in half this week and replaced that half with H2 blocker for now. So I take PPI in the morning and H2 blocker at night. The next time I see my doctor I will ask for the next step for tapering off but it is all depends on the pain at the time I see my doctor.
I made an appointment to see another doctor for the 2nd opinion. Have to wait the whole month though.
Thank you All for your advice and recommendations.

GloriaD,

No advice-just a note to say I am thinking of you and hoping your taper is going well.

Clo