1 year later, still undiagnosed bleeding

[Coloradomom]

My son was hospitalized and diagnosed with Crohn's one year ago. He began on humira twice a month and large dose of steroids. Every time steroids reduced bleeding came back. He was very slowly reducing steroid till about June he went off completely.

The bleeding came back more frequently and colonoscopy was done in September. Colon looked great. Since then still bleeding and has become more frequent.

Doctor seems to be at a loss. While I would hate for him to go back on steroids I am at a loss. Should we be increasing humira or try something else? Second opinion?

Or is this just normal for Crohn's?

 

[ronroush7]

I would consider a second opinion. Maybe a specialist.

2

 

[Clash]

If he has been on humira to no avail when pred is reduced then some testing should've been done. Has his humira levels been tested? Has he been tested for antibodies to humira? Usually if you are still having symptoms after being on the med for 6 months these tests are run to determine if the med needs to be upped or the schedule increased.

How old is he? Does he see a peds GI? It might be best to get a second opinion preferably at a large children's hospital that deals with IBD in children if he is still at the age to be under the care of a peds GI and children's hospital.

Being on pred for that long has its own issues and if your son was willing I may choose instead to try EEN, exclusive elemental nutrition. It's formula only for a number of weeks and can be done by mouth or if the kid chooses by ng tube. It doesn't have the side effects pred does but has the near the same efficacy rate. My son did supplemental EN for a few months to gain weight for surgery. He chose to place the ng tube every evening and take the formula in over night while sleeping. He would remove his tube every morning for school. He was 17 at the time.

I would definitely keep pushing for answers. If his colon looks good visually did the biopsies also come back good? Has he had imaging of the small bowel? Was the TI visualized during scope (the last part of the small bowel that attaches to the colon)? Has he had a fecal calprotectin test?

I know this must be stressful and pred for that long must be so frustrating for him. Keep pushing for answers! Hugs!

 

[Lady Organic]

so when he went for the latest colonoscopy he had bleeding at that time right?

does he have pain also? diarrhea?

Bleeding with stools is definately not normal. But other conditions can cause this, Hemorrhoids for instance. Those can be pain free and cause bleeding.

does the dr monitor with blood tests and fecal calprotectine (stool test)? if he doenst have fecal calprotectine, ask for it, this is an easy done test.

 

[ronroush7]

so when he went for the latest colonoscopy he had bleeding at that time right?

does he have pain also? diarrhea?

Bleeding with stools is definately not normal. But other conditions can cause this, Hemorrhoids for instance. Those can be pain free and cause bleeding.

does the dr monitor with blood tests and fecal calprotectine (stool test)? if he doenst have fecal calprotectine, ask for it, this is an easy done test.

Yed

 

[ronroush7]

I meant yes

 

[shamrock15]

I had undiagnosed bleeding for about three years. It was only found eventually through a pill cam. In that time I had received over 60 units of blood.

How old is your son? What activities does he do? My bleeding started around the time I was about to become a dad and I was going through university as an adult. A lot of stress and disrupted sleep. I was also starting remicade and for awhile thought it may have been the cause. When the stress dropped a bit and sleep returned, my bleeding basically stopped. Medication does not seem to have had any impact on it one way or the other.