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Ulcerative Colitis
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Posted 6/2/2016 2:39 PM (GMT 0)
After over a year of remission, I am beginning to flare. I had stopped drinking nopal over a month ago because I had to do a lot of traveling with my new job and wasn't sure how to transport it. I had been in remission for a year so thought I would be ok on just the Asacol HD. I thought I saw faint traces of blood a few days ago and started drinking nopal water again, but today there was a lot more blood so I have a call in to my GI to get a script for Uceris, I have another business trip in less than 2 weeks and don't want to risk waiting for the nopal to kick back in again. It works pretty slowly for me. I just hope that the Uceris can get me back to remission and then the nopal water can keep me there. I should never have stopped drinking the nopal. Apparently it was just enough to hold me in remission along with Asacol, but Asacol alone is never going to be enough for me. I see mostly intact pills in my stool often so that's probably why. Going to discuss switching to a different med that releases at a slightly lower pH to see if that would be better (probably Lialda). If that doesn't work next step will be Humira. So bummed. I had been doing so well.
Posted 6/2/2016 2:56 PM (GMT 0)
Sorry to hear you've had a turn for the worse. Sounds like you have a good plan, good luck.
Posted 6/2/2016 3:42 PM (GMT 0)
Oh no, CC! I too am having a flare after a year of symptomatic remission, but mine happened when they switched me from Lialda to Asacol. I also am seeing completely intact Asacol pills in stool, even dragged them out and poked them to make sure the medicine was still in there....have returned to nightly mesalamine enemas too but things are still shaky.

I also re-tried daily doses of slippery elm tea which made the blood and mucous go away in recent weeks until I see my GI on the 21st. I hope to have an appeal filed with my insurance to return to Lialda. Keep us posted and best to you.
Posted 6/2/2016 3:45 PM (GMT 0)
it's a thin line we walk sometimes - sorry yours got even thinner shakehead

hang in there -
Posted 6/2/2016 7:34 PM (GMT 0)
Ugh, sorry to hear you're flaring after such a long remission.

I have been totally symptom-free and feeling great for 2 years now, and then *wham* with a flare that's been starting up over the last couple of days. Ugh!

Hang in there, this is a great place to come rant, talk about poop, and get ideas.
Posted 6/3/2016 12:24 AM (GMT 0)
Thankfully I had a quiet afternoon. Started the Uceris, drinking my nopal water, popped some Tylenol for the pain. I am restarting enemas too. Hoping I can get on top of this quickly.

Sorry to hear of others who are starting to flare after long remissions too. Zen, sounds like you have a good plan -- hope you win your appeal! zucchini, what are you doing to stop your flare?

Thanks, for your well wishes ipoop & juststud!! Muchly appreciated!
Posted 6/3/2016 7:34 AM (GMT 0)
Sorry to hear you are flaring. ☹️ I hope you can get it under control.
I take tummeric but I don't think it's doing a lot for me. Your post jarred my memory about reading about nopal water. Is it hard to make your own? I see that it's a bit spendy, so I'm guessing it's cheaper to make it yourself.
Posted 6/3/2016 4:30 PM (GMT 0)
Homemade nopal water is extremely easy. I usually get the nopales pads already cleaned from a Mexican grocery store because scraping off the thorns is time consuming & messy, but not really hard once you get the hang of it. I use leather work gloves to handle the pads if I am cleaning them myself because those thorns hurt! The grocery store charges $1.99/lb for uncleaned pads and $2.99/lb for the cleaned ones. The extra $1 is worth it for me! A pound of pads usually lasts me 2 weeks

Anyway, to make the nopal water:
Cut up about 4-5 oz of the cleaned pads into 1"-2" pieces. I usually split the thicker pieces down the center. (I use a little postage scale to weigh them since the pads are all different sizes)
Throw the pieces into a 2 qt pitcher & fill with cold water.
Refrigerate overnight before drinking.

That's it! Leave the pieces in the pitcher as you drink the water. It will get thicker as you take the water away, but it's still drinkable. The water will be a little thicker than plain water and has a slight cucumber-ish taste. I find it rather refreshing. For maintenance I was drinking 8 oz in the AM and 8 oz in PM. Flaring -- 16 oz AM & 8-12 oz PM
Posted 6/3/2016 4:48 PM (GMT 0)
CC - you asked what am I doing to stop my flare?

Well, for starters, try not to panic, though yesterday I was definitely in panic mode. I had 6 watery BMs yesterday, and felt really crampy. Today, oddly, I've only had one soft poop and no cramps. This disease is so weird.

I had a stash of anti-inflammatory type supplements that I had taken before, so I dosed up on all the ones I had on hand.

Then I got to thinking, I went camping last weekend and drank the water from the potable water spigots at the campground. Maybe I just got some sort of nasty something from the water last weekend? Gosh, I could hope that's all it is. In the meantime, try not to panic, make doctor appointments, eat as "clean" as I possibly can, go to bed on time, and continue to try not to panic...
Posted 6/3/2016 5:00 PM (GMT 0)
I know what you mean about trying not to panic. I was in full blown panic mode yesterday. The blood and abnormal BMs had me fearing the worst. Thankfully no D so far and the BMs were more normal this AM but still blood. I think the nopal is starting to kick back in (been drinking it again for about 5 days now). If not for the business trip coming up I would skip the Uceris and just give the nopal time to work, but I just don't want to risk it.

It's very possible you picked up a bug and in another day or so will be back to normal. ~fingers crossed for you~
Posted 6/4/2016 12:03 AM (GMT 0)
Thanks for the DIY for Nopal water, I'm going to definitely give it a try.
Posted 6/5/2016 3:22 PM (GMT 0)

CCinPA said...
I know what you mean about trying not to panic. I was in full blown panic mode yesterday. The blood and abnormal BMs had me fearing the worst. Thankfully no D so far and the BMs were more normal this AM but still blood. I think the nopal is starting to kick back in (been drinking it again for about 5 days now). If not for the business trip coming up I would skip the Uceris and just give the nopal time to work, but I just don't want to risk it.

It's very possible you picked up a bug and in another day or so will be back to normal. ~fingers crossed for you~

Definitely not the water, I still have the weird and highly variable poop schedule a week later, and now there's blood too. Sigh... wishful thinking!

How are you doing?

I've never heard of Nopal water, need to look that up now. :)
Posted 6/5/2016 3:28 PM (GMT 0)
Ha ha - I just google searched for "Nopal Water" and one of the first things I see in the search results is a discussion here on Healingwell. Cool! Looks like it's worth a try. I am lucky to have both a Whole Foods and a Hispanic grocery store practially right around the corner. Now if I can only motivate myself to get out of the house...
Posted 6/5/2016 5:13 PM (GMT 0)

CCinPA said...
Homemade nopal water is extremely easy. I usually get the nopales pads already cleaned from a Mexican grocery store because scraping off the thorns is time consuming & messy, but not really hard once you get the hang of it. I use leather work gloves to handle the pads if I am cleaning them myself because those thorns hurt! The grocery store charges $1.99/lb for uncleaned pads and $2.99/lb for the cleaned ones. The extra $1 is worth it for me! A pound of pads usually lasts me 2 weeks

Anyway, to make the nopal water:
Cut up about 4-5 oz of the cleaned pads into 1"-2" pieces. I usually split the thicker pieces down the center. (I use a little postage scale to weigh them since the pads are all different sizes)
Throw the pieces into a 2 qt pitcher & fill with cold water.
Refrigerate overnight before drinking.

That's it! Leave the pieces in the pitcher as you drink the water. It will get thicker as you take the water away, but it's still drinkable. The water will be a little thicker than plain water and has a slight cucumber-ish taste. I find it rather refreshing. For maintenance I was drinking 8 oz in the AM and 8 oz in PM. Flaring -- 16 oz AM & 8-12 oz PM

Really? That's all you do? No blending? No cooking? No squishing and straining? You just chop it up and let it sit in a pitcher of water? Have you ever tried blending it up and straining? Seems like you'd get more of the plant juices out that way...?
Posted 6/5/2016 11:15 PM (GMT 0)
Sorry to hear that, it does sound like nopal helped, hopefully once it gets back into your system you might be okay again.
Posted 6/6/2016 4:34 PM (GMT 0)
Zucchini -- that's it. I've never tried doing anything else with it since it's so cheap & simple and seems to help me.

I don't like to jinx things but I had a perfectly normal BM this AM and didn't see any visible blood :) Hoping that I was able to get on this quickly enough to keep the flare from getting worse. After I get back from my upcoming trip I am going to contact the dr about trying Lialda. I suspect that this flare started because I stopped drinking nopal and since too many Asacol pills come out whole so I may not be getting enough medicine. I am going to try transporting some cut up nopal pads in my carry-on bag when I go on my trip so I can make some water at the hotel (I have a refrigerator in my room).
Posted 6/6/2016 11:56 PM (GMT 0)
Sounds like a plan! It's so hard to eat well and follow a careful diet when you're traveling, but cutting up some leaves and soaking them in water seems easy enough to do in a hotel room. Good luck and I hope your improvement continues!!!
Posted 6/21/2016 12:45 AM (GMT 0)
Well I had a really good week the week of 6/6 ... solid poops 1-2x/day with only very faint blood. But that all changed last week while I was on my trip. It still wasn't real bad but stools kept getting looser and started seeing more blood. Today was pretty bad -- lots of blood, have gone 5-6 times today (so far), all very loose and one time it was actual diarrhea. Hoping that now that I am back home I can get back to my normal routine and things will settle down. I did call the GI today and got a script to give Lialda a try for a month to see if that will help. I just don't get how I could have a whole week of almost normal and now back to blah

On top of all of this I managed to pick up some sort of throat infection that has spread to my ears. Saw my PCP today and now have a Z pack and 3 tablets of Diflucan. Hate being on antibiotics and the dr was worried that given that I am on Uceris I could get an out of control yeast problem because of the antibiotics (I've had thrush before). I'm doubling up on probiotics too.

I guess this throat infection could be contributing to the increase in UC symptoms. If so, I hope that this all clears up quickly because right now I am really bummed.
Posted 6/21/2016 1:05 PM (GMT 0)
Max out the lialda at 4 per day, get rowasa enemas for nightly use. And get a stool test, maybe you've got c diff, always rule it out when symptoms suddenly turn for the worse.
Posted 6/21/2016 11:27 PM (GMT 0)
Things seemed slightly better today --seems like it's less blood -- more pinkish than bright red -- and have only gone 4x today (so far). Still very loose or just diarrhea -- not remotely formed. If things get any worse I will definitely ask for a stool test. I didn't use the enemas while I was on my trip (how do you travel with them??) so maybe that's why I slipped backward. I was using them before I left and started using them again on Sunday. Started on the Lialda today. ~fingers crossed~
Posted 6/21/2016 11:38 PM (GMT 0)
I've put enemas within my checked bags on flights before, with no issues.

Hang in there, getting back to your usual medication regiment might be enough to get over your little blip without the dreaded pred.
Posted 6/21/2016 11:42 PM (GMT 0)
I hope so, iPoop. Pred messes with my head so much and I am too new on this job for people to put up with that kind of emotional craziness -- definitely want to avoid it if at all possible!
Posted 6/23/2016 9:13 AM (GMT 0)
Yesterday was a bad day -- lots of blood but very little stool in the many trips to the restroom. Didn't really having urgency, just needed to poo and not producing much. This AM very little blood but a large volume of D (which was actually a relief because I got rid of some of the fullness from not pooing). I have 2 more days on the antibiotics so hopefully this weekend will see more improvement.

The increased blood started after I resumed the enemas on Sunday. Last night I didn't use an enema and had a lot less blood. Is it possible to develop a reaction to the enemas even though I didn't have problems with them before?

For now I am taking Uceris, 2 Lialda 2x/day, and nopal water. This flare is so weird. It started 3 weeks ago. A week after starting Uceris and resuming nopal I was nearly back to normal. The following week I was traveling and started seeing a bit more blood and looser stools. This week is by far the worst. I have my fingers crossed that things will turn around again soon!
Posted 6/23/2016 11:35 AM (GMT 0)
Uc healing is anything but a consistent, linear improvement. Don't loose hope.

"Is it possible to develop a reaction to the enemas even though I didn't have problems with them before?" Yes, one can develop a mesalamine or sulfate intolerance at any time. It would be a dramatic worsening of uc symptoms though.
Posted 6/23/2016 4:59 PM (GMT 0)
The difference between Sunday (before I resumed using enemas) and Monday (after I used the enema) was pretty big. Prior to resuming the enemas I didn't have any actual D -- just loose stools with blobby pieces of varying sizes and only slight blood in the stool. As I said above Monday was pretty bad, then Tuesday seemed a little better but still a good bit of blood and very loose with D. Yesterday was really bad -- by far the worst since I was first diagnosed -- most times it was just all blood. I had used the enemas 3 nights in a row. Last night I didn't and today (so far) is better -- only very faint blood and after the initial bout of D I have had 2x where it's blobby pieces again. I think I am going to skip the enema again tonight and see what tomorrow brings! ~fingers crossed~
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