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Bleeding but no diarrhea... So frustrated!!!

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Posted 6/22/2012 7:19 PM (GMT 0)
Hi, I was diagnosed with UC back in April 2010, been hospitalized 2x, I'm still learning how to deal with all this. Last May I started Remicade, it was definitely a life saver, it stopped the diarrhea, however, this past April I started getting blood back in my stool. So I started taking prednisone 40mg a day and it helped but never got rid of it. The last Remicade infusion I got this past May 16th seemed to stop the bleeding, so I started tapering off m pred. But now these last few days i have started getting more blood. I'm so frustrated and confused on how to handle this disease. I feel so lost! Please can anyone give me any advice?
Posted 6/22/2012 7:51 PM (GMT 0)
Unfortunately it's a matter going thru all the meds to see what works for you. Trial and error. I hate to say this but if you are bleeding on the Remicade then it's really not doing its job. You need to sit down with your doctor to go over everything and find out what some other options are. Best wishes.
Posted 6/23/2012 12:29 AM (GMT 0)
UCMama,

Welcome to the forum.

Sorry you're having problems getting the bleeding under control with the meds.

The traditional meds did not work for me, and I became intolerant of them.

When my doc gave me a choice of remicade or surgery, I refused both and did alot of research

Through diet modification, I was able to reduce my BMs from 10-15 per day (including urgency, cramping, pain, D, etc...) to 4-5 per day. BUT I was still bleeding ALOT.

Then I added various supplements, probiotics, and LDN - low dose naltrexone and BINGO, the bleeding stopped.

If you are interested in the  info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

 

Let me know how I can help you.

 

 

Posted 6/23/2012 1:24 AM (GMT 0)
I agree with Byebye. It is all about trial and error.

I recommend looking at the resources thread on the forum main page. There is a post in there that explains the medical options and the alternative treatments. That may help give you an idea of where things stand. The usual treatment path is 5ASAs > steroids > immune supressants > biologics > surgery.

There are options available that aren't typically offered (by a GI) - you have to be your own advocate. Some of these medications, you have to seek a doctor to prescribe (LDN for example - seems to work well for many but isn't offered by most GIs).

One of the most important things, imo, is that you don't get caught up in taking steroids for too long. I was in a routine, taking prednisne, couldn't taper off without symptoms returning... I finally started 6mp and was eventually able to get off prednisone but it was a long road and I am concerned that I've damaged my bones with longterm pred use. I also gained a bunch of weight and I just haven't felt myself since taking pred.
Posted 6/24/2012 8:42 PM (GMT 0)
Rectal meds! I had bleeding but no diarrhea- rectal meds fixed it.
Posted 6/24/2012 9:06 PM (GMT 0)

notsosicklygirl said...
The usual treatment path is 5ASAs > steroids > immune supressants > biologics > surgery.

.

According to BeatUC the usual treatment path is as follows:

ASAs > steroids > immune supressants > biologics > ASAs > steroids > immune supressants > biologics > ASAs > steroids > immune supressants > biologics > ASAs > steroids > immune supressants > biologics > ASAs > steroids > immune supressants > biologics > ASAs > steroids > immune supressants > biologics > ASAs > steroids > immune supressants > biologics >ASAs > steroids > immune supressants > biologics > deathbed.....sigh surgery.


LOL
Posted 6/25/2012 11:28 AM (GMT 0)
I have the same problem, everybody have diarrhea, but I dont since the last two years, and the bleeding is not stopped. Ohhhh, last night a lot of blood, I told myself, that it is the end, you will die, but I am alive till now with heavy headache, eye inflammation.

the blood comes at the start of bowel movement, and well formed stool.
Posted 6/25/2012 5:00 PM (GMT 0)

kloe0038 said...
Rectal meds! I had bleeding but no diarrhea- rectal meds fixed it.

Did you have the bleeding even while on Remicade?
Posted 6/25/2012 11:43 PM (GMT 0)

UCMama1105 said...

kloe0038 said...
Rectal meds! I had bleeding but no diarrhea- rectal meds fixed it.

Did you have the bleeding even while on Remicade?


No. Remicade is a recent addition to my treatment plan. I've been in remission for a few months now, thanks mostly to Imuran and Canasa.
Posted 6/28/2012 3:17 AM (GMT 0)
I never had diarrhea during my flares until my current one. But there were many months where I would bleed with formed BMs. Rectal medicines definitely help with that because it is most likely the very end of your colon that has ulcers. The medicine can't get that far down so you need to treat it from the other end.
Posted 6/28/2012 1:14 PM (GMT 0)
That is what is happening with me now. No diarrhea but blood. I'm taking Canasa. I go to my GI next week.
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