CLL Support Association

Warning: Subject is gross

I've seen posts about bloody noses on another CLL forum I'm a member of, but could not find it here. I typically have these in the spring. I've read that it can be due to low platelets. So, here comes the gross part - I've been having bright red stools lately, which could indicate blood (no, I have not been eating a lot of beets lately:-). I don't think the CLL is directly related, but could low platelets or something else be causing me not to be able to stop the bleeding more easily? I have an appointment tomorrow because when I called today they wanted to see me ASAP. I have a feeling this will lead to a colonoscopy - so I'm not thrilled. Both my parents died of colon cancer - one at age 57, the other at 76 - I'm only 50. But, when I looked on WebMD, there are numerous things this could be. Either way, my question remains - could my body be having a harder time stopping the bleeding due to the CLL?

16 Replies
oldestnewest

Platelets are the component of you blood that stops bleeding and while low platelets (e.g. due to CLL infiltrating bone marrow and enlarging the spleen) can be responsible, there are lots of other possible causes of bleeding continuing, as you've discovered from WebMD.

You've done the right thing arranging a prompt appointment. Hopefully it's nothing serious, but with this happening, you are likely to become anaemic due to loss of iron, plus there's the risk of infection.

Do you know your last platelet count? If so, here's a guide to your likelihood of bleeding with CLL caused low platelets (thrombocytopenia):

Risk of Bleeding is based on the Platelet Count (USA Range)

100,000 - 149,000 cells/mm3 Little to no risk of bleeding

50,000 - 99,000 cells/mm3 Increased risk of bleeding with injury

20,000 - 49,000 cells/mm3 Risk of bleeding increased without injury. Spontaneous bruising will be seen (mostly on the arms and legs)

10,000 - 19,000 cells/mm3 Risk of bleeding greatly increased

Less than 10,000 Spontaneous bleeding likely

The equivalent ranges for some laboratories in the US and most other countries:

100 – 150 Little to no risk of bleeding

50 – 99 Increased risk of bleeding with injury

20 – 49 Risk of bleeding increased without injury. Spontaneous bruising will be seen (mostly on the arms and legs)

10 – 19 Risk of bleeding greatly increased

<10 Spontaneous bleeding likely

By the way, blood in stool changes appearance depending on how far up the gastric tract the bleed happens, from the expected red if it is near the end to more black and tarry further in.

Let us know how you go,

Neil

2 likes
Reply

It's not a gross subject! It's a serious conversation! Understanding your platelets is important. Any bleeding is a red flag. At 50 with your family history I hope your getting colonoscopies. I'm not surprised your doctor wants to see you! I wish you the best of luck!

5 likes
Reply

Must be a very worrying time for you. I hope all goes well and please let us know how you get on.

My thoughts and best wishes are sent.

Sue

British

2 likes
Reply

Hi

I've had 2 Colonoscopies and they were not painful at all (results OK).

Not dignified though, as they involve lots of wind and backless boxer shorts.

All the best

Ottie x

2 likes
Reply

I had colon cancer a year ago... occult blood was picked up in a FOBT test prior to starting ibrutinib, but it got much worse for the few months I was on it...

The concern with CLL is an infiltration of the CLL into the bowel..

Colonoscopy found colon cancer [Adenocarcinoma] and I had the ascending colon removed over Christmas... in a full open operation.

Hopefully your case is not like mine, and perhaps the blood is from polyps... but this is something you need to pursuit...

~chris.

2 likes
Reply

Hi carrot top

I was passing a lot of blood with my stools recently, after having a flexible sigmoidoscopy they are satisfied that it is just a haemorrhoid. The process was a bit uncomfortable and embarrassing but really no big deal.

It does seem to be bleeding more often since I have been diagnosed with CLL and also I seem to be passing A LOT more blood but the doc has assured me that it is actually ok and I am not losing a dangerous amount.

Not sure if this is any help to you but I find it useful in these situations to know that other folks are experiencing similar things.

All the best with you'd appointment.

Jamie

1 like
Reply

Thanks - that is encouraging.

1 like
Reply

My colonoscopy is scheduled for Oct 6. With my family history I had to start doing these tests in my 40s, so I'm no stranger to the procedure. For me, the hardest part is the prep - I'm asleep during the procedure. They basically said it could be a number of things, including internal bleeding hemorrhoids, but they won't know until after the procedure.

3 likes
Reply

I'm curious what your prep is. I had a colonoscopy a few months ago and the prep was much different than five years ago. My husband had his first last month and his prep was the same as my most recent one was so it seems like they have changed it.

I couldn't eat the day before which was normal, and took dulcolax at 4 pm and one half of a miralax solution at 5 pm. The second half of the miralax solution had to be taken six hours before the procedure. Since mine was scheduled for 7:15 am that meant that I had to take the rest of the miralax at 1:15 am. That left me awake for 24 hours which is difficult if you have health problems to start with. I told them that if the prep is the same in five years I would refuse to have one again. My husband was scheduled for 12:45 pm so he had to do the remaining prep at 6:45 am which was much more reasonable.

Reply

I'm in the US and this is what I was told:

1 week prior - discontinue all supplements

3 days prior - no fruits, veggies, or corn. No foods that contain seeds like tomatoes. You can eat meat, fish, rice, pasta, breads w/o seeds, peanut butter, eggs, cheese, cereal - very limiting for a vegan diet.

2 days prior - no solid foods after midnight

1 day prior - clear liquids only

Noon day prior - take 4 Dulcolax

5pm day prior - 1/2 miralax

8 hours prior - other half of the miralax

My procedure is at 6:45, so I guess I'll be in the same boat and have to wake up in the night. But, I'm usually up most of the night anyway due to the Dulcolax and Miralax.

1 like
Reply

I have always used Pico-Salax... easy

pico-salax.ca/instructions....

Reply

That does sound better if you get an afternoon time. I wasn't able to request a specific time. They called two days before to tell me the time.

Reply

I had one in the afternoon once. They still tell you to start the liquid diet at the same time as if you had a morning appointment. Being hypoglycemic, that did not work well for me at all. I almost passed out after the recovery when they were trying to escort me to the car.

Reply

My colonoscopy showed no polyps, so no cancer!

2 likes
Reply

Awesome news! 😀

Reply

Great news for sure...glad to hear!

Reply

You may also like...