Newbie

[Crohnie1023]

Hi I am not posting here about myself but my son. I was diagnosed with Crohn's disease many years ago. My son is 24 and has had IBS since he was ten. Been on every medication imaginable and scoped up/down several times through the years. I was glad it was not crohns and had accepted diagnosis. As a nurse though I became very concerned last May when he started having frank bleeding with the diarrhea. Full battery of tests repeated and all negative. Although one cat scan showed thickened loops of small bowel and he also has WBC's and of course positive hemacult. I am frustrated now because they can't find any cause for the bleeding. Not even any evidence of a current or past hemmeroid. He is as clean as can be. He has severe abdominal pain, cramping, diarrhea and a feeling like he constantly has to go. He is in law school and missing class for runs to the bathroom. Sometimes he just has explosive gas with blood. His GI just started him on a trial of Entocort ( we opted not to do prednisone as he is going into finals). We are hoping that if the med works when it is withdrawn he will flare bad enough that it can be found. I really just wanted to share my frustration and express my sympathy to those of you going through the same thing. I fortunately have drs who listen to me/him and r trying desperately to figure it out.

 

[Clash]

Welcome to the forum. I'm sorry to hear of all the trouble your son is having. Have they offered a pill cam to check the part of the small bowel neither upper or lower scope can see? Or maybe an MRE(magnetic resonance enterography)? It has shown to be better than CT scan and MRI and does not use radiation. Also a fecal calprotectin stool test will show inflammation in the GI tract and warrant further investigational tests.

Hope you find some answers soon.

 

[Crohnie1023]

Hi thanks ! Yes to all of the above. Two positive lactoferrins but calprotectin negative. He has also been to hematology to rule out a bleeding disorder. I am really at a loss. I assume it is somewhere in the jejunum but got missed. We r just stuck in a holding pattern until whatever it is shows its face. GI thinks severe IBS or Crohns. I have never heard of this much bleeding with iBS. Anyone here that bleeds with IBS with out hemmeroids ?

 

[UnXmas]

Hi, I'm very sorry to hear about your son as I know how it feels when your symptoms defy all test results. I did get diagnosed in the end, but I'm still often told that objective tests do not justify the severity of my symptoms, and I have some symptoms unrelated to Cronh's which are still undiagnosed.

Roughly how much blood does he pass? Is it bright red? I have had tears in the skin around the anus before that did cause bleeding, bright red blood but only very small amounts, especially on toilet paper after wiping. From what you're describing I'm guessing your son is bleeding much more than this, but perhaps it's possible that a tear could heal without leaving any noticeable damage behind once it's healed?

You're very lucky that you have doctors who take your (and your son's) word for it and have been willing to try treatments even without a clear diagnosis. I think that is key. Although there is always the possibility that an explanation will be reached (one of my illnesses was undiagnosed for years, then I saw a specialist who just happened to know what none of the other consultants I'd seen did), I have found I've been able to accept that in some ways I have an unprecedented condition that defies current medical tests. I was lucky too, as I have a surgeon who has been willing to help me even though we are not clear on exactly what is going on. He gave me an ileostomy to improve my quality of life, because he believed me when I told him how bad the symptoms were (a lot of doctors haven't believed me) even though he couldn't explain why my symptoms were so bad.

Don't give up looking for a diagnosis, keep getting him tested if his doctors agree that testing could be useful, but at the same time, accept that a diagnosis may not be forthcoming. Just as you have learned to accept that you have a disease that will most likely never be cured, you and your son may be able to accept that he has a condition that may never be completely explained. Work with his doctors on finding treatments and ways to improve his quality of life and make things easier for him, and it's possible that in the process of doing so, a diagnosis may present itself eventually.

 

[Crohnie1023]

I have always said to my son and his drs... when it ( whatever it is ) is bad enough it will present itself. If it is something yet to be discovered...well we will just continue to treat the symptoms.
His bleeding varies...sometimes bright red blood on toilet paper sometimes a toilet full of blood with dark clots. It reminds me of what us ladies see with our periods. I have asked every dr who has done a rectal or colonoscopy about fissures and hemmeroids but there is no evidence. I guess that would be too easy :-/. I really thought it would be a hemmeroid with all the IBS symptoms. I also asked my son but he denies any rectal discomfort.

 

[Crohnie1023]

I have always said to my son and his drs... when it ( whatever it is ) is bad enough it will present itself. If it is something yet to be discovered...well we will just continue to treat the symptoms.
His bleeding varies...sometimes bright red blood on toilet paper sometimes a toilet full of blood with dark clots. It reminds me of what us ladies see with our periods. I have asked every dr who has done a rectal or colonoscopy about fissures and hemmeroids but there is no evidence. I guess that would be too easy :-/. I really thought it would be a hemmeroid with all the IBS symptoms. I also asked my son but he denies any rectal discomfort.

 

[Crohnie1023]

Well my son is now on his 5th week of Entocort. The dr just reduced him from 9 mg to 6 mg. The good news is the Entocort is working. The bad news it is working. He hasn't had any blood since the first week he started. His symptoms have been reduced approximately 75%. For now the dr intends to keep him on the medication but at some point I guess we will have to withdraw and try and get a positive biopsy. Although Entocort is not supposed to cause systemic symptoms I do see his face becoming swollen. Just wanted to give everyone an update.