Friable Colon

[bny806]

Hello - I'm new here.. I have suffered 3 years of GI issues - wt loss.. many bowel movements a day.. then neuro symptoms followed after the worst GI exacerbation and wt loss.. My sibling was diagnosed with Crohns in the meantime... I never had blood until last week, so they did another scope (last one was 3 years ago)..

showed gastritis, and then the colon was very "friable" aka it bled easily when touched and swelled up when he would touch it or biopsy it, which is quite abnormal... no super obvious ulcerations though.. My sister's scope wasn't too bad, but the pill cam showed awful crohns in the small bowel.

Of interesting note though - my labs returned from earlier this week - show signs of malabsorption - my zinc, B1, folate and B12 are all quite low... (I have neuro symptoms as well that people have been trying to figure out for three years since right after my GI symptoms started).. Also my wbc was low (3.4) and my blood counts show i'm anemic - i have never been anemic.. and I get my cbc checked a few times a year.. ...

so pill cam is next on the list.. any thoughts on this?

Thanks in advance

 

[Essieluv]

I think a pill cam is definitely a good place to go next. Just curious, what are your neurological symptoms? An endoscopy might be helpful too, to get a glance at the beginning of the small intestine.

 

[bny806]

Thanks! They did do an endoscopy as well... it showed gastritis.. duodenum seemed ok... I got sick after I had my daughter.. I was nursing and then the GI symptoms were going crazy.. I lost A TON of weight.. and stupidly continued nursing (i'm sure draining my body of any nutrients I had left)..

about 3 months after the GI issues started I started getting numb feet, hands.. then tongue even.. My tongue was sore and would easily bleed.. then I started loosing srength.. couldn't do anything- they were wondering if it was guillian barre or myasthenia gravis... I lost my dexterity.. I also have lhermittes sign (but negative MS workup).. I had a bad tremor for a while as well.. and swallowing difficulties. .. lots of fun! I ended up getting IVIG which helped all of my symptoms - GI and neuro.. when it starts wearing off My stomach issues flare and neuro ones too.
have you ever heard of a friable colon?

 

[Essieluv]

My latest endoscopy showed a friable stomach. My GI said that was fairly common and didn't necessarily mean anything. I was not completely satisfied with that answer, but that was all I could get.

Are you still on the IVIG? I find that to be very interesting. I have heard that it can be very helpful, even with Crohn's and IBD.

 

[bny806]

Yup, I do IVIG every 3 weeks.. when it is wearing off all my symptoms get worse- the neuro/weakness, stomach everything - then about 4 days after the infusion it all gets better for a couple of weeks.. I'm so thankful for it!