So frustrated... when is this going to end? (TMI)

Hi - I was diagnosed with ulcerative proctitis and gastritis in January of this year. I also had CMV complicating the proctitis, but that has been gone since April. During the worst of it, I had several BM's a day and the worst urgency; I was afraid to leave the house.

My frequency has gotten significantly better, my urgency as well (although i'm not sure if that's because I recognize the signs... I don't think I would be able to not give in if i suddenly had to go. I am still pretty much afraid to leave the house and any outing requires me to call the place in advance and make sure there is a bathroom available!)

Why, then, do I STILL have blood in my stool??? It doesn't fill the toilet bowl, it is only with the actual stool. I will go in the morning, normal formed stool, then the second one will have blood tinge on the end, then mucus will follow that will be bloody tinged... then throughought the day, the stools get more and more bloody, until the end of the day, I am having "false" bowel movements (i.e i feel like I have to go, but all that comes out is mucus) and the mucus is basically dark brownish reddish blood/mucus... i dont even know what it is!! I have no pain.

Anyone else had this issue? Initially my doctor said it was hemmerhoids.. now he wants me to be scoped. I had a flex sig a month ago, I had one a few months prior to that, and a colonoscopy in March. I'm sick and tired of being scoped and told him NO. Maybe a rash decision, but I'm sick and tired of flushing myself out and having to feel sick and go to the doctor and then recovering.

Meds: Went off Asacol HD bc it was making my symptoms worse... currently on Canasa very intermittently because I always forget to take it.. Also on Align and multivitamin, as well as a gluten free diet.

I agree with Judy, it sounds like your proctitis is still a bit active. It's mild but it's not completely in remission. I think the best thing to do is start getting serious with your treatment routine. Use Canasa nightly and see if there is improvement. The problem is that if you're intolerant of Asacol HD, there is a chance that Canasa will also make you worse if you use it too much. You could try a steroid suppository of cortifoam.. in many cases, this illness is here to stay and managing the symptoms is the only way to head towards being 100% symptom free. Another scope, while a hassle, can help to visualize to whether your condition is improving or progressing.

Chili,

Welcome to the forum.

You've gotten good advice and I agree with soystud too.

Maybe align isn't a strong or varied enough probiotic for you?

Multi-vitamins are typically hard on the stomach and NOT well absorbed.

I found that by doing these things it helped control my symptoms by 75%:

1) adequate high intake of vitamin d3 ( need to get your levels checked first)

2) good probiotics are key

3) slippery elm powder to coate the intestinal tract helped greatly

4) l-glutamine amino acid powder for long term colonic repair

5) food combining

6) diet modification as in gluten and dairy free

7) rectal meds help lots of folks out

 

 

The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission.

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more 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.

I hope you feel better and let us know how we can help you.

 

Chili,

I would recommend liquid vitamins and minerals - that's what I take.

I agree, Aign isnt the right probiotic for you. Everyone I know who has tried it says it gives them a stomachache. You need live probiotics, the refrigerated kind.
Maybe get B-12 shots instead of relying on a multi-vitamin?

Both Align and the multivitamin could be making you feel worse...although not likely the cause of the blood.