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Can't get rid of the blood!!!

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Ulcerative Colitis
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Posted 1/5/2010 3:16 PM (GMT 0)
I started tapering Entocort in November and all my symptoms returned in full force (urgency, waking during the night, blood, loose stools.) I began Rowasa on November 25th. I saw immediate improvment. I have been on the regimen in my sig line for weeks now. I have formed stools, 4 times/day, no nighttime trips to the bathroom. Urgency is great-if I leave the house for 12 hours I may not realize I have to use the bathroom until five minutes after I walk in the door.

Now to the #$%#^@ blood. I have blood almost every bowel movement. Eighty percent of the time it is a small amount: maybe a string or two 1cm long and the width of a pen stroke. These don't really concern me. But then, out of nowhere, there will be a larger amount floating like little satellites around the stool. If I gather them all together, it will be a little puddle about the diameter of a quater. the blood is mixed with mucus, Rowasa, I don't know. It is very clear whatever it is. It is always mixed with the clear liquid (so it never mixes with the water in the bowl, they just sort of float around.)

I got immediatly better witht he Rowasa but haven't made any progress since that day in November. The up and down is driving me nuts: little blood, no blood, bam a lot!
I just had a BM with a good amount of blood. This afternoon I may have none at all. What is the deal?
Posted 1/5/2010 3:34 PM (GMT 0)
Maybe you are a bleeder like me! Even during more settled times I ALWAYS have blood. The only days over the past 3.5 years with no blood were the few days on very very high dose prednisone. When bad - the blood fills the whole bowl (water turns completely red) and have clots - when med then it covers stool and is separate - when mild then on stool or on its own with mucus. Lovely.

No advice - just empathy :) Hope that you find something to work!
Posted 1/5/2010 5:52 PM (GMT 0)
You're completely off the entocort now?

You're still on the Asacol?

It's not a large amount of blood....it could be pooling after your last bm.

Are you having any urgency?

I think it's a positive thing having it mixed with mucus and Rowasa...

You could ask the doc for possibly a steroid suppository for you to use during the day...

Personally...if that happened to me and I went to my doc....he would say "be patient. You're not worse, and the rectal inflammation can be the most stubborn area to heal". OK, he said that a lot to me in the first years of flaring.

What's the consistency of your bm?

Are you taking any fishoils? Vitamin E?

I suggest you take the metamucil consistently.

Hang tough....been there.

quincy
Posted 1/5/2010 6:24 PM (GMT 0)
Quincy...first thanks for always answering, you've helped me as my as my doctor and I'm very grateful.

I've been off Entocort for 26 days, it's out of my system. Urgency is awesome, it's like my colon waits for me to get home or to a comfy locale before I even know I have to go sometimes.

Consistency: Although some have been very soft, I've had 120 BM's since starting Rowasa and all have been solid and formed.

It's weird how it's always mixed. Before Rowasa it might be a streak or multiple streaks of blood on the stool or even soluble/mixed with the toilet water. Since Rowasa, it's always mixed with the mucus/Rowasa. Why do you think that is a good thing?

Yes, I'm taking fish oil and Vitamin E.

Lastly, Metamucil. It invariably gives me green stool. Almost like it moves the stool through too quickly. You told me yesterday they would help with my probiotics. I took a little at 10:00AM. After lunch at 1:00PM, I had a small BM with a large amount of Metamucil that looked like green steamed spinach. I don't know if I can't tolerate it or what. I took probably 3/4 tsp.

I feel alot better that you think it may not be a major deal to have a little blood. All other symptoms are great, I'm just battling this blood.

Thanks again for all the advice.


Edit: Still on Asacol. I'd say half the medicine is absorbed, half is...umm...evacuated prematurely.
Posted 1/6/2010 12:11 AM (GMT 0)
I don't know if you're interested in something like Chinese Medicine? Have a look at this, it's often used by TCM doctors for colitis with other formulas? It's been used in wars to stop soldiers from dying from internal bleeding and is supposed to be very effective in preventing this. You might need to consult a TCM doctor for advice about dosages and other formulas to heal your gut etc etc. Good luck.
http://en.wikipedia.org/wiki/Yunnan_Baiyao

ps, it's supposed to work very quickly (within days) so if you try it you will know whether it's doing the job or not.
Posted 1/6/2010 3:27 AM (GMT 0)
All I can say is I was bleeding for months all the time with Asacol and Colazal, soon as I quit taking them and switched to a low dosage of sulfa the bleeding stopped within a day. I also started that spinach and sunflower diet too.
Posted 1/6/2010 7:05 PM (GMT 0)
I don't usually have much blood, and when I do, it is bright in color and seems to come from the very end of the chain. My understanding is that bright blood, in relatively small amounts, is not so much of an issue. It is the darker blood that comes from deeper in the colon that is of concern.

Does this make sense to others?
Posted 1/6/2010 7:54 PM (GMT 0)
Bleeding whether from the rectum or higher up should be a concern if it's not being treated.

If one has fissures, treat them. If one has hemmies, treat them. If one has UC, treat it.

If one is improving, then the meds are working, but singularly rectal inflammation with bleeding can sometimes be a beast to get under control. Consistency is the key with the 5ASA meds, but for some...it's not enough, so other meds need to be used such as steroids, immunosuppressants or biologics...or eventually surgery.

quincy
Posted 1/7/2010 10:24 PM (GMT 0)
I know this has been discussed before, but couldn't find it after a search. Is there any particular significance to a bloody BM when the blood is located mainly at one extreme end of one of the pieces?
Posted 1/7/2010 11:50 PM (GMT 0)
I always bled a little every time (until Remicade). It was not a concern for me, as long as I felt good and didn't have urgency. My body could keep up and I only became anemic during bad flares.
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