Pls Help(Terminal Ileitis) confused , scared and need support
Long post but pls read!
32M from post soviet country, where IBD is not well known and very few specialists(by saying specialist i mean simple gastroenterologists, not IBD specialist at all) are present. My case are looking 4 gastroenterologist but not definitive info yet.
Maybe there are some true IBD specialists ,or some nerds that can evaluate biopsy result also.
First of all about my symptoms
- Mostly chest pain and bleaching(gas in chest)
- When eating a lot of sugar and fast food , or stressed (i am prone to anxiety/panic attacks) either diarrhea or constipation, when eat healthy and mental stabile, normal stool once per day.
- Upper right abdominal pain when stressed.Can come back and go away.And lower mild abdominal discomfort.
- Until recently no weight loss, even weight gain.(just recently lost weight when informed that might have Chron and got supper stressed)
- Experiencing fatigue but not severe.
Blood tests
- CRP- 2.25
- B12 - 288
- Iron - 17
- Ferritin - 303
- Lioferon - negative(for latent tuberculosis)
Stool tests
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Calpro - 160
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Calpro - 262
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Coprogram - ok nothing unusual
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Stool culture test - only E.Coli (not harmful type) but at the end i saw antibiotics list to treat it like why ?
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HPylori - active positivev infection
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Lamblia and yersinia - negative
Findings
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Gastroscopy - Atrophic gastritis with HPylori + low stomach acid.
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Colonoscopy- One small ulcer in ileum, and a little 2-3 erosions. Clean colon.
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CT is clean.
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Biopsy report(translate it from my native language by google translate do not judge strong pls)
There are 4 biopsies in the sections, three of which are represented by fragments of the small intestinal mucosa, one by the large intestine. The basis of the biopsies is edema, vascular hyperemia, and microfocal hemorrhages, including a diffusely moderately expressed mixed lymphoplasmacytic, eosinophilic, and neutrophilic infiltrate under the covering epithelium, the latter with intraepithelial localization (cryptitis). There are single focal accumulations of lymphocytes. The covering epithelium is desquamated in places. In the preserved sections, the glands are mostly pointed, of proportional height. A fragment with granulation tissue was also found. The glands are mostly regular, small and medium caliber. Single irregularly bordered, fused glands were found.
Moderately expressed basal plasmacytosis of the base is also observed in the colon biopsy.
Cryptabscesses and granulomas were not found.
Histological conclusion -
The histological picture is most compatible with chronic active, erosive/ulcerative "bauginitis", the early stages of inflammatory bowel disease, ulcerative colitis, are not excluded. Clinicoendoscopic and radiological correlation is necessary.
So based on all of these
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First doc was 100 percent sure it is chron, and advice me to start immediately with infliximab, though at the end he suggest to seek second opinion and event translate my biopsy and send it to abroad like germany to seek third opinion. I mean dude if you are sure about your diagnose why told to seek second or third opinion?
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Second doc first refused to call it Chron’s (which start all these confusion)and told that this might be some post infection stuff, because biopsy findings is not super strongly suggesting Chrons , and my clinical symptoms also pointing that this is not Chron. But after a while , he did cd138 test, and told me that that this might be the IBD even with UC possibility, though post infection stuff still possible. And prescribed me the following treatment
Duspatalin + Salofalk 600mg(1 month) + Rifaximin 400mg (2 week) + Gastritol
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Third doc told since i have no clinical symptoms, suggest me to repeat again calprotectin , and seek second lab which will repeat biopsy test ,and if it is the same , and calpro higher than 50 then it is chron and start with Inflaxibin.
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Fourth doc just told me to chill , drink some antibiotics and everything will be good( i forget about him immediately).
So i decided to follow the path of the second doc, cause i think if there is even 0.1 percent doubt that this is Chron’s ,i do not want to jump into biologics .
After starting the treatment i was feeling much much better, i mean my energy and mental health was improved a lot, and my lower abdominal discomfort just disappeared,my fecal shape was a lot improved, until i finished rifaximin course… and everything come back fatigue , abdominal discomfort even very mild pain , with not so good fecal shape(no diarrhea but not as good as when i was taking rifaximin)
Based on biopsy , my symptoms, ct scan, treatment reaction( that i was feeling good while taking rifaximin) what is your opinion ?
Posted May 4, 2025, 4:34 PM UTC