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Crohn's Hemorrhage?

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Crohn's Disease
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Posted 11/20/2010 12:54 PM (GMT 0)
Hi, new to this forum, and new to Crohn's disease. I have had 3 severe Hemorrhage's requiring hospitalization/transfusion over the past 4 months. This is actually how I was diagnosed. I have no other symptoms of the disease. I have ulceration in my small intesting causing the bleeding (identified by pillcam test).

I am curious for those of you that my have had similar severe bleeding issues what your treatment plans were - and did you ultimately have surgery or were you able to stop the hemorrhages with drugs alone?  I understand this presentation of the disease is rare, but hoping to find someone with experience.  

Thanks!

Posted 11/20/2010 3:23 PM (GMT 0)
I have hemorrhaged due to crohns and required blood transfusions, time in hospital, etc but mine was caused by the blood thinners.... I originally had blood clots due to crohns and they were treating it with blood thinners. however the drs were not monitoring it well enough and my INR dropped, my blood thinned out, and the ulcerations in my bowels bled out. So while I have experienced hemorhages due to crohns, and can imagine how miserable you feel, I didn't have it happen for the same reason as you. My treatment was to switch blood thinners once my INR went back to a reasonable level. I went from coumadin to injection LMW Heperan. So I didn't experience hemorhages again.

Hopefully someone comes along who has some more experience in this that can share some insight into treatment plans etc.

Hope u feel better soon!

B
Posted 11/20/2010 5:56 PM (GMT 0)
It might be worthwhile to ask your doctor about being checked for any hereditary bleeding disorders just in case.
Posted 11/20/2010 8:45 PM (GMT 0)
good point crohnietoo- I had a hematologist following me for a couple years after my issues and they ruled everything out- any bleeding/clotting issues I had were CD related. But it is worth getting those things checked out since you are still early in the game Erika.

B
Posted 11/20/2010 9:47 PM (GMT 0)
A good friend developed Crohn's in her small bowel in the early 1960s. This was before all the fabulous diagnostic tools available now. She would hemorrhage 3-5 times a year requiring transfusions and hospitalizations. I am not sure of the exact number, but I think it was about 12 years years ago that she was put on Imuran. Since that time she has not had a single bleed. I would caution while her response was dramatic, I also think it is unusual.

What treatment plan(s) have your doctors(s) suggested or started?

Also, if your screen/display name is your actual name, you might want to consider changing it. Once on the Internet, it is there forever for all to glean information. To change your screen name, select MY PROFILE on the upper left of the page. Once there, select EDIT PROFILE. The third heading down is DISPLAY NAME. That's where you would make the change. When finished, select SUBMIT at the bottom of that page.
Posted 11/21/2010 12:57 AM (GMT 0)
yes ive hemorhaged 3 times.. all from the ulcerations.. you see the crohns will go through the entire tickness of bowel.. when it hits a vein or artery in the intestine , it wil bleeed until it can clot off. depending on how big the vessel is it can take a while.. always a good thing to get to the dr when you have heavy bleeding for more than 1 poop cycle. i mean there is no mistaking it when it happens, we all or most get some blood with stool etc.. but this will be unmistakable.. good luck
Posted 11/21/2010 2:31 AM (GMT 0)

Ides said...
A good friend developed Crohn's in her small bowel in the early 1960s. This was before all the fabulous diagnostic tools available now. She would hemorrhage 3-5 times a year requiring transfusions and hospitalizations. I am not sure of the exact number, but I think it was about 12 years years ago that she was put on Imuran. Since that time she has not had a single bleed. I would caution while her response was dramatic, I also think it is unusual.

What treatment plan(s) have your doctors(s) suggested or started?

Also, if your screen/display name is your actual name, you might want to consider changing it. Once on the Internet, it is there forever for all to glean information. To change your screen name, select MY PROFILE on the upper left of the page. Once there, select EDIT PROFILE. The third heading down is DISPLAY NAME. That's where you would make the change. When finished, select SUBMIT at the bottom of that page.

So far I am on Entocort (Budesonide) + Apriso (mesalamine). I was originally on the Budesonide for 2 weeks when I had my most recent bleed so they added the mesalamine. My GI Dr. wanted to put me on the TNF blockers (Cimzia) but I have a history of melanoma (removed with surgery 2 yrs ago at age 29) so my Dr's that follow me for that did not want me going on the TNF blocker so we went with the Mesalamine. I think the next step if these don't work would be Imuran.

My name is Erika and I live in Houston, TX - pretty sure there are hundreds of us :-), but thanks for the info on changing profile names.

 

Posted 11/21/2010 2:36 AM (GMT 0)
I needed 4 blood transfusion in 8 months a couple years ago (episodes of black stool lasting 24-48 hours). My disease sounds similar to yours, my only symptoms are blood loss and weight loss, with very occasional diarrhea. But over the 10 years I've had this the most troublesome has been the fatigue due to blood loss.

Humira healed my gut enough that I no longer need transfusion and of my last test my hemoglobin is actually normal. Everyday that I feel good and have energy feels like a small miracle. If the Humira didn't work the next step was surgery. I still feel that I will need surgery at some point as the Humira has a tendency to just stop working after a while in people.

Good luck.
Mike
Posted 11/21/2010 2:49 AM (GMT 0)

randynoguts said...
yes ive hemorhaged 3 times.. all from the ulcerations.. you see the crohns will go through the entire tickness of bowel.. when it hits a vein or artery in the intestine , it wil bleeed until it can clot off. depending on how big the vessel is it can take a while.. always a good thing to get to the dr when you have heavy bleeding for more than 1 poop cycle. i mean there is no mistaking it when it happens, we all or most get some blood with stool etc.. but this will be unmistakable.. good luck

  Yes, definitely unmistakable :-). Unfortunately, I also pass out when this happens. I have about 2 mins notice of just feeling overall like death warmed over, i pass out, come to, sweats, nauseousness and then just massive amounts of blood for 24 hours, then totally fine. It's crazy. I feel fortunate to not have some of the other horrible symptoms (yet?) - but would like to stay out of the hospital!
Posted 11/22/2010 9:32 PM (GMT 0)
Erika -

I am a 29 year veteran of Crohns/UC/Crohns (diagnosis pendulum swings wildly depending on GI :) I had a 2 week case of diarrhea, was put on
ampecillin by my GP, and had SEVERE hemorrhage. Ended up in Intensive Care for 7 weeks, received 30 units of blood, 2 exploratory surgeries
looking for the source of the bleeding. This was in 1981, so diagnosis was primative. I ended up being labeled with Crohns by default. I had gone
downhill so fast that I ended up on TNP (food thru a central line), and sepsis, so my surgical incision was left open with drains for most of the time
I was in there. I also ended up with 2 fistulas, one of which healed by itself, one of which was surgically closed on the 95th day.

I had been married for 2 months when this all started. Still married to the same wonderful guy - baptism by fire!!

I have also had 2 other bleedouts, one time I ended back in the hosptial for a month, was ready to check out on the 28th day, and bleed out
again! They kept trying to catch it with nuclear medicine, but we never found the source. I had minimal inflammation at the time (according
to numerous scopes).

There is no rhyme or reason to the bleeding for me. During the 2nd bleedout, they decided to try Flagyl, which seemed to work. I think I was on
it about 6 months before we dropped it. Now I am on Flagyl for the fistula that won't heal (see separate thread).

Now I don't have bleedouts, but I do have a partial obstruction, an abdominal fistula, chronic pain, and am anemic enough that I have had 2
blood transfusions. It doesn't seem to help -- I am still always tired...

So... in my experience, flagyl is a low tech solution. (I am on Humira for the fistula, but have seen no improvement in any of my symptoms, but
my GI refuses to "rock the boat" and take me off anything). The only bad thing about flagyl is NO alcohol. Not a big deal - I am not a huge drinker,
but I would like to have a glass of wine every now and then :) Best of luck and try some yoga or tai chi or something to keep your stress down...

Sudsmom
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