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Severe Crohn's bleed but no cause found

Hi all - so last week, I woke up in the middle of the night and felt the urge to go to the bathroom. Okay, well, nothing new there. But it was just straight blood when I went. I've had some bleeding with BMs before (Crohn's Disease, diagnosed a little over 20 years ago in 1998/99). But this was just blood - and it kept coming. And coming. And coming. I drove myself to the ER at about 3 a.m. I was admitted, and had two more bleeding incidents. The second of which sent me crashing - I almost fainted, and needed a blood transfusion. Hemoglobin dropped from 12 to 9, very rapidly, so they transfused immediately. Thankfully, the bleeding stopped.

The next day, I had an upper endoscopy performed after I tested negative on a routine check for COVID-19 (I had a chest X-ray the previous night). The endoscopy didn't show anything significant. Still no BMs at all at this point since the previous night, which is good. The following day, I took an enema in the morning to clear for a sigmoidoscopy - went nothing but blood again, but obviously triggered by the enema so it was a mess. I was on cortisone IV drip at this point. Sigmoidoscopy also showed nothing - no diverticulitis, etc. C Diff test came back the following morning, also negative. My hemoglobin levels remained stable at around 10, and they put me on oral prednisone (40 mg day) and upped my Pentasa dosage for maintenance. They released me from the hospital. I've had no bleeding since then, thankfully, and am following up with my doctor later this week in his office.

But they never found the cause of it. It was a pretty severe, sudden, onset GI bleed. I've never in 20 years had anything like that happen. Has anyone else had this experience? I'm very concerned about it happening again, especially because they don't know why. I had JUST had a routine colonoscopy about five months ago, and everything looked good then. My doctor - who is great - doesn't seem overly concerned, or maybe it's more accurate to say, he doesn't know what else we should be doing at this point except to keep up the current medication regimen and continue to self-monitor.

Did this happen to anyone else? And if so, what happened after? Thanks!
 

my little penguin

Moderator
Staff member
Did they do imaging - MRE /capsule endoscopy ?
Why didn’t they do a full colonoscopy since the damage could have been above sigmoid colon ?
Since things can change rapidly with crohns
What meds are you on currently ?

tagging @crohnsinct
 
Did they do imaging - MRE /capsule endoscopy ?
Why didn’t they do a full colonoscopy since the damage could have been above sigmoid colon ?
Since things can change rapidly with crohns
What meds are you on currently ?

tagging @crohnsinct
Hey MLP! Not sure why they didn't do a colonoscopy, maybe because I'd had an all clear so recently? I don't know. I'm on Penatasa, 2.5 grams per day as maintenance, and I'm also now on 40 mg per day of Prednisone to get the inflammation rapidly under control.

Thanks!
 
Hey MLP! Not sure why they didn't do a colonoscopy, maybe because I'd had an all clear so recently? I don't know. I'm on Penatasa, 2.5 grams per day as maintenance, and I'm also now on 40 mg per day of Prednisone to get the inflammation rapidly under control.

Thanks!
Also, no capsule endoscopy at this point although he mentioned he might do one soon
 

my little penguin

Moderator
Staff member
Per the Cochran report a few years ago Pentasa is Not recommended as a monotherapy for crohns
Crohns affects the entire thickness of the intestine
While UC only affects the top layer So it is recommended for UC
Pentasa and 5-Asa act like a cream on the intestine and only treat the top layer leaving inflammation to fester in the lower layers of the intestine

years ago they didn’t know this was the case but have learned about it recently past 5-7 years
Ds was dx at age 7 and placed on Pentasa for 30 days
It did nothing
He is now 16 and on Stelara for crohns plus methotrexate for arthritis

If your on 40 mg of pred daily then more likely nothing will show now in any testing .

5 months isn’t recent for a scope
They can go back in quickly if needed

Can you get a second opinion for a records review at least ?
Different Gi
Different hospital
Fresh set of eyes is always helpful in these cases and we have found them to be appreciated by Ds Gi
When things go south for no reason
 
Per the Cochran report a few years ago Pentasa is Not recommended as a monotherapy for crohns
Crohns affects the entire thickness of the intestine
While UC only affects the top layer So it is recommended for UC
Pentasa and 5-Asa act like a cream on the intestine and only treat the top layer leaving inflammation to fester in the lower layers of the intestine

years ago they didn’t know this was the case but have learned about it recently past 5-7 years
Ds was dx at age 7 and placed on Pentasa for 30 days
It did nothing
He is now 16 and on Stelara for crohns plus methotrexate for arthritis

If your on 40 mg of pred daily then more likely nothing will show now in any testing .

5 months isn’t recent for a scope
They can go back in quickly if needed

Can you get a second opinion for a records review at least ?
Different Gi
Different hospital
Fresh set of eyes is always helpful in these cases and we have found them to be appreciated by Ds Gi
When things go south for no reason
Not a bad idea at all to get more eyes on it, for sure. I've been on Pentasa as maintenance for probably 10 years or more at this point, so maybe my disease being relatively under control during that time is more coincidental than anything. My doctor has often spoken of other meds to treat instead of Pentasa (he's aware of its efficacy for UC as opposed to CD, and has advised me accordingly). I've always resisted because the stronger drugs really knock me on my backside (I was on Humira for a while, and had terrible side effects).

But it may be time. I don't know. We've discussed remicade, possibly, as a different biologic to try. As for 5 months for a colonoscopy, that's not considered recent? Thanks!
 
Per the Cochran report a few years ago Pentasa is Not recommended as a monotherapy for crohns
Crohns affects the entire thickness of the intestine
While UC only affects the top layer So it is recommended for UC
Pentasa and 5-Asa act like a cream on the intestine and only treat the top layer leaving inflammation to fester in the lower layers of the intestine

years ago they didn’t know this was the case but have learned about it recently past 5-7 years
Ds was dx at age 7 and placed on Pentasa for 30 days
It did nothing
He is now 16 and on Stelara for crohns plus methotrexate for arthritis

If your on 40 mg of pred daily then more likely nothing will show now in any testing .

5 months isn’t recent for a scope
They can go back in quickly if needed

Can you get a second opinion for a records review at least ?
Different Gi
Different hospital
Fresh set of eyes is always helpful in these cases and we have found them to be appreciated by Ds Gi
When things go south for no reason
But yes, bottom line, it's probably high time for me now to explore the biologic/TNF inhibitor route. I can't have a bleed like that again. Thanks so much for bumping this discussion and for your input/insights
 

my little penguin

Moderator
Staff member
Stelara has a lower infection rate than anti tnf
But takes an extremely long time to be effective (8 months average ) vs humira /remicade (6weeks to 3 months )
Ds was on remicade for 8 months (allergic reaction ) and humira for over 5 years
There are in between drugs
Methotrexate is one
Imuran another
Lots of side effects for ds with both of those
Methotrexate still makes him sick but not as bad while on pills instead of shot
Imuran went to his liver so that was a no go

Good luck
 
Stelara has a lower infection rate than anti tnf
But takes an extremely long time to be effective (8 months average ) vs humira /remicade (6weeks to 3 months )
Ds was on remicade for 8 months (allergic reaction ) and humira for over 5 years
There are in between drugs
Methotrexate is one
Imuran another
Lots of side effects for ds with both of those
Methotrexate still makes him sick but not as bad while on pills instead of shot
Imuran went to his liver so that was a no go

Good luck
Thank you so much. Side effects are scary, but the disease is scarier. Hope your son is doing well. It's a tough disease to deal with, and it sounds like he's been dealing with it since he was just a little guy :(
 
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