What is "Normal" Now?

I'm feeling discouraged and just need some advice.

I was diagnosed with left-sided UC in early February. After my initial flareup, I feel like I have been very close to achieving remission (occasional blood in stool, but no other symptoms), but can never quite get there.

For the last month, my symptoms have been more apparent. More blood, either streaked on surface of stool or actually in the stool. I have been seeing a bit more mucus, but not a lot. I've been more gassy (lots of stomach rumbling after eating), as well. Other than that, though, I have experienced no other symptoms.

My GI prescribed Canasa last week. I noticed a dramatic improvement for the first three days. Two BMs a day, mostly well-formed and little to no blood. This morning, I saw what seemed to be a considerable amount of blood (I know that it can seem like more than it really is) in the stool - a chunky mix of blood and stool at one end of the BM.

Again, other than the blood, gassiness, and occasional mucus, things seem fairly good. No pain, diarrhea, fever, weight loss, diminished appetite, etc. My GI said he isn't concerned unless I see diarrhea, increased BMs, and what he calls "blood in the bowl."

I know that I am still very much a UC rookie. Despite what I read online, I haven't really developed an understanding of what it is like to live day-to-day with this disease. It doesn't seem like many GIs can help in this regard, either.

So is this my new "normal?" When I see blood, it scares me because I think the inflammation/ulceration is going to ultimately lead to damaged cells and malignancy. Is it "normal" that I'm in this up and down cycle with seeing blood in my stool? I am currently taking 4,800 mg of oral Mesalamine (Delzicol), along with Rowasa and Canasa nightly. Also, DSL #3, fiber, and Vitamin D daily.

quincy said...
Not your new normal, but hopefully going in the right direction to healing.

How long on the enemas? And nightly?

q

I've been on the enemas since I was first diagnosed. For a while during the summer, I had tapered down to once every three days, but I've been taking then nightly again for the past month.

quincy said...
So since you are improving....i would suggest you request a steroid foam enema to add during the day instead of the canasa.

Has your doc taken a look-see in office? For hemmies?

q

So you would say that I am improving overall? It is so difficult for me to form an opinion; I just see the up and down cycle with the blood.

He did do an in-office check. He said that he felt lumps that could indicate hemmies. When I had the colonoscopy, he did diagnose me with hemorrhoids. Is it possible for them to cause this type of bleeding? I thought hemorrhoid blood presented itself as just streaks on the stool with some bright red blood on the toilet paper.

No it is not your new normal to see bleeding intermittently for years on end. Normal is a remission.

That said, healing is one heck of a rollercoaster ride of ups and downs when you're talking UC. It sounds like any inflammation that remains is fairly mild (due to formed 2 bms a day) but you likely have some very mild inflammation remaining within your rectum. Mix it up a bit with some extra anti-inflammatory power. I had success doing two rowasa enemas a day for 2-months, I'd ask your doctor about it.

Yeah, even my new GI said left sided. I NEVER will use that since it's waaay too vague regarding assumption.

It took me a very long time for my UC to finally heal....and it took 3 years for me to understand the healing process in regards to symptoms.

While doctors seem to be hung up on blood amount as a determining factor. I'm hung up on symptoms before/or after that point depending on from remission or a flare. Inflammation happens in increments, so your state at this point is healing with fragile tissue. If you arent having mucus bms mixed with bleeding, and only stool occasionally with blood, then the tissue is still fragile but limited to rectum, stool might be sitting in an area that absorbs pooled blood from a previous bm.
The streaking would be where it's not sitting there but picking it up on its way out. Yes, hemmies can streak a stool also, and it would be on tp as well. Confusing, but I would assume flare over and above the occasional fussy and bothered-by-enema-nozzle hemmies.

So in me saying that, ask for steroid suppositories instead of enemas and use them daily.

Is your stool harder? Stool softeners, fibre supplement, upping vitamin C and certain foods to loosen stool might help easier passage through the rectum.

q

quincy said...
Yeah, even my new GI said left sided. I NEVER will use that since it's waaay too vague regarding assumption.

It took me a very long time for my UC to finally heal....and it took 3 years for me to understand the healing process in regards to symptoms.

While doctors seem to be hung up on blood amount as a determining factor. I'm hung up on symptoms before/or after that point depending on from remission or a flare. Inflammation happens in increments, so your state at this point is healing with fragile tissue. If you arent having mucus bms mixed with bleeding, and only stool occasionally with blood, then the tissue is still fragile but limited to rectum, stool might be sitting in an area that absorbs pooled blood from a previous bm.
The streaking would be where it's not sitting there but picking it up on its way out. Yes, hemmies can streak a stool also, and it would be on tp as well. Confusing, but I would assume flare over and above the occasional fussy and bothered-by-enema-nozzle hemmies.

So in me saying that, ask for steroid suppositories instead of enemas and use them daily.

Is your stool harder? Stool softeners, fibre supplement, upping vitamin C and certain foods to loosen stool might help easier passage through the rectum.

q

Like you, I am assuming that I am more likely flaring (although mildly), despite some symptoms which may point toward hemmies.

No, I don't have a problem with hard stools.

MK....my opinion...expelling bms with just mucus or just mucus and blood is more inflamed than just blood and mucus or just blood during a bm because the rectum is in the state to eliminate anything in there asap. At least in my experience out of remission into early flare compared to healing from a flare since meds are more of a continual and change is noted by improvement. We don't tend to recognise subtle changes going into flare since our stool consistency and increase might vary with food intake and not be continual until it's more inflamed and obvious.
I don't expel mucus alone unless in a flare.

I haven't bled in a flare for a verrrrry long time, unless after biopsies for few days.

q

More of the same this morning. Two well-formed BMs with blood on and in the stool. Once again, a small "chunk" of looser stool with what seems like a fair amount of blood - wine-colored, but bright red on toilet paper. Overall, I feel very good. My energy level is good. My appetite is healthy. I've even had less gas the past two days. So confusing.

I have an appointment with my GI next Wednesday, and will definitely ask about the steroid enemas. Speaking of which, how do they equate with steroid pills in terms of side effects and the overall impact of putting more steroids in my body?

no one can say for sure how you will react to the enemas, but they are a topical treatment as opposed to systemic, even tho a small amount will still be absorbed - normally shouldn't be an issue using them -

Thanks for the information and advice, everyone. I would just like to take as little Prednisone as possible. I want to make sure it works if/when I REALLY need it. I have also been told that it's effects on the body are cumulative. I have already taken three cycles since my diagnosis in February - one twenty-day cycle and two twelve-day cycles.

Ask for foam enema to use dayrime after bms.... in conjunction with the rowasa at night.

q

Best to see exactly what is going on up there and then decide an appropriate treatment plan. If it's bad then you might want to think about immunomodulators (6MP/Imuran) or biologics (remicade/humira).

I have an appointment for the sigmoidoscopy on October 2 (I hate waiting so long!). From what I have learned on this site, I won't be put completely out for the procedure; does that mean I will be able to drive?

Whatever is happening, it definitely isn't just hemorrhoids. The daily pattern has been: Two well-formed BMs in the morning with little or no traces of blood/mucus, then one or two small "BMs" with lots of mucus/blood around noon. I'm not sure what to make of that; any thoughts?