j-pouch 22 years , now health issues

I don’t see these reported as adverse reactions to Humira, but in the meantime you could add bananas to your diet and use more salt. Are you getting enough fluid?

My Dx of UC was in 1987. Proctocolecomy with open, 2-stage, IPAA 1990 @ UCLA. In fact, I'd never even heard of "indeterminate IBD" until decades later. I'm sorry to add this, but that Dx has got to be a kick in the sore butt when one presents with features of two generally quite distinct diseases.

For me, since my ileal pouch became fully functional 4-6 months after stoma takedown, keeping my body hydrated has been a constant and unavoidable theme in my life.  Of course this makes perfect sense as water absorption is really the colon's central physiological function. Perhaps oddly, however, my plasma electrolytes have remained within acceptable ranges even when I'm "a quart low" (or more) on the dipstick.

That said, I've been to the ED plenty of times (maybe 1-3X yr) solely for fluids 2* to pouchitis and/or overexertion in the summer.  However, this does have the unexpected benefit of a bona fide excuse for letting me mow the lawn on a more casual schedule
 
TNF-α inhibitors like the prototypical adalimumab (Humira) had not yet been conceived of when I had active UC, thus I have no personal experience with antibody-based ("biologic") therapies.

If I could go back in time, however, I'd be very keen on trying vedolizumab (Entyvio), an α-4β7 inhibitor, which works mostly within the gut lumen, suggesting (at least to me) that it is likely to have fewer systemic side effects than TNA-α mAbs.But I definitely have to do more study regarding "indeterminate" IBD.  Is it an actual third, previously unrecognized IBD? with distinct diagnostic markers yet to be identified?  Or merely an actual simultaneous presentation of both diseases, difficult to infer histologically or otherwise?

 Please post any academic papers you my come across regarding indeterminate IBD, various Txs including Entyvio, and their side effect profiles.

Cheers,
Steven

Scott F posted:

I don’t see these reported as adverse reactions to Humira, but in the meantime you could add bananas to your diet and use more salt. Are you getting enough fluid?

yes i drink lots of water, but i will have to start drinking Naked, bananas and strawberry drink. real ripe bananas block me up with the fiber . thanks for the reply. as of every morning and all day long i feel like ive been drugged. my head is very lightheaded and then later in the day i get a 15 minute spell of excessive lightheadedness

Steven Silz-Carson posted:

My Dx of UC was in 1987. Proctocolecomy with open, 2-stage, IPAA 1990 @ UCLA. In fact, I'd never even heard of "indeterminate IBD" until decades later. I'm sorry to add this, but that Dx has got to be a kick in the sore butt when one presents with features of two generally quite distinct diseases.

For me, since my ileal pouch became fully functional 4-6 months after stoma takedown, keeping my body hydrated has been a constant and unavoidable theme in my life.  Of course this makes perfect sense as water absorption is really the colon's central physiological function. Perhaps oddly, however, my plasma electrolytes have remained within acceptable ranges even when I'm "a quart low" (or more) on the dipstick.

That said, I've been to the ED plenty of times (maybe 1-3X yr) solely for fluids 2* to pouchitis and/or overexertion in the summer.  However, this does have the unexpected benefit of a bona fide excuse for letting me mow the lawn on a more casual schedule
 
TNF-α inhibitors like the prototypical adalimumab (Humira) had not yet been conceived of when I had active UC, thus I have no personal experience with antibody-based ("biologic") therapies.

If I could go back in time, however, I'd be very keen on trying vedolizumab (Entyvio), an α-4β7 inhibitor, which works mostly within the gut lumen, suggesting (at least to me) that it is likely to have fewer systemic side effects than TNA-α mAbs.But I definitely have to do more study regarding "indeterminate" IBD.  Is it an actual third, previously unrecognized IBD? with distinct diagnostic markers yet to be identified?  Or merely an actual simultaneous presentation of both diseases, difficult to infer histologically or otherwise?

 Please post any academic papers you my come across regarding indeterminate IBD, various Txs including Entyvio, and their side effect profiles.

Cheers,
Steven

Thanks for the reply, still lightheaded after 2 weeks and then everyday i have a spell of 15 minutes of extreme lightheadness where i just have to lay down

With persistent lightheadedness, I have to wonder if you’re seriously anemic. Have you had blood labs since this started?  I get loopy when my hematocrit drops below ~25 or so. (42-50 is normal for a male living near sea level, and rises incrementally with living at 4,000+ ft elevation for months)

my  blood sugar and hemoglobin and blood pressure checked out ok, going to have a complete blood profile in the morning . I live in Alabama so elevation is not a issue. Thanks for the reply. 

therealstinger posted:

my  blood sugar and hemoglobin and blood pressure checked out ok, going to have a complete blood profile in the morning . I live in Alabama so elevation is not a issue. Thanks for the reply. 

 

Hoping for good news soon!

Had blood test run today, now wait and see, but it never happened before thats why my Doctors think its the Humira. started taking pens 4 months ago

My DH has one banana every morning. Helps with the potassium.

lablover posted:

My DH has one banana every morning. Helps with the potassium.

thanks for the reply, but i have to have frozen purated bananas and strawberries

Damn dummies at my dr office last Friday did the same exact test as the past two week ER visits after I told them to check my White blood cell count, so this Friday 31st thru my Company im getting a complete breakdown of everything in my blood. Cholesterol and blood count, vit D-25 , frustrated with this lightheaded ness always gets worse after lunch and late evening. im like drugged??