Nopal & meds update

It's now been a month since I started drinking nopal. While I can definitely say it helped with frequency & consistency as well as eliminated the gurgling sounds I would get, it hasn't eliminated the blood. Up until the past few days I had been seeing blood about twice a week. I've now seen it 3 days in a row and today is the first in a long time when I have gone more than twice a day. Since starting the nopal, I have been having fully formed BMs 1-2 times a day. But because of the lingering blood I had changed my med from Asacol HD to Colazal (I see whole Asacol pills sometimes -- not just the shells -- and thought that since Colazal has a different release mechanism it might be better for me). I made the med switch 2 weeks ago and feel like I am now regressing. I sent a message to my GI this AM asking if I can switch back to Asacol and where we go from here. Not sure what the dr will want me to do next. I asked him for a course of pred to hopefully get rid of the blood. I've been seeing this blood for 8 months now and it's pretty worrisome to me that I obviously have at least one spot of inflammation that won't heal. I also asked him whether I could take 6MP since I had problems with azathioprine. I'm pretty scared of biologics so hoping that isn't where he wants to go next. Will have to wait & see what he says.

I plan to continue to drink nopal for now because it definitely helps, but it's not enough and I need something else to get to full remission. My opinion of it is that it can help if you are in a mild flare with loose stools, but it may not help stubborn inflammation and may take a while to see any improvement if you are in a severe flare. It's worth a try as a cheap, entirely natural supplement with no artificial ingredients that you make yourself. Don't know about any of the commercial products that some are trying.

How is everyone else who is trying nopal doing?

I feel like my symptoms are so very mild that I shouldn't have to take such powerful medicine. I have read about a lot of side effects ... very scary side effects ... on Humira and that's the one the dr mentioned to me in the past. Things like psoriasis, severe joint pain, lupus, vision problems. On the Crohn's forum there seems to be a lot of people who post about side effects.

Right now, I have an excellent quality of life. My only real symptom any more is the blood. I am very grateful for my relative good health, but I worry about cancer because of the ongoing inflammation so I know I have to do what I can to get it cleared up. And I will even if I am scared because I am more scared of cancer.

CCinPA said...
I feel like my symptoms are so very mild that I shouldn't have to take such powerful medicine. I have read about a lot of side effects ... very scary side effects ... on Humira and that's the one the dr mentioned to me in the past. Things like psoriasis, severe joint pain, lupus, vision problems. On the Crohn's forum there seems to be a lot of people who post about side effects.

Right now, I have an excellent quality of life. My only real symptom any more is the blood. I am very grateful for my relative good health, but I worry about cancer because of the ongoing inflammation so I know I have to do what I can to get it cleared up. And I will even if I am scared because I am more scared of cancer.

The side-effects are all fun and games until it happens to you or a loved one. Your concern is warranted since 2-5% of all adverse reactions to medications are really reported. There is no accurate way to track adverse reactions from a drug because the FDA hasn't invested any money in an accurate and reliable reporting system (but they have invested tons in biologics and other pharmaceuticals).

Prednisone is a much scarier medication than biologics. Prednisone gives everyone temporary side effects, and includes irreversible side effects such as osteoporosis, glaucoma, and type ii diabetes for those who are on pred too long.

I haven't had a single side effect from remicade and I've been on it 1.5 years. Yes, biologics carry rare risks of serious side effects, such as lymphoma. However, you really need to weigh the risk versus the benefits of biologics. The odds are 60 percent plus that biologics will improve your uc symptoms. The odds of adverse side effects such as lymphoma are less than one percent (6 in 10,000 or 0.06 percent). And 60 percent of those who get it from biologics get lymphoma into remission. The odds of the average healthy person on the street getting lymphoma are 2 in 10,000 (or 0.02 percent). Not exactly something to loose sleep over.

Whether you can justify biologics for bleeding, that's your call. I'm just saying biologics aren't something to be afraid of. It's a misinformed point of view that pops up here from time-to-time. They've worked wonders for me and others here.

You could consider a course of steroid enemas to see if that will stop the bleeding.

I stopped drinking nopal after about a week and no change in symptoms. My symptoms aren't bad though, it's like going a few more times than normal. However, I saw no improvement, not even one less stool with nopal.

Hi all,

I took Nopal for a little over a week, but not every day. I drank approximately 16 oz in the morning over the 10-ish days. I probably did it two days on, one off, two on, etc. I noticed a near immediate reduction in the 'busy' feeling in my lower gut (I have left side colitis) and that feeling has not returned even though I am about 2 weeks past taking any Nopal. My trips to the bathroom decreased dramatically, too, and I had larger formed stools. I am now at 2 in the morning (one when I wake and one after I drink a soda) and then one in the evening. A few days I did not go more than the two in the morning -which hasn't happened, well, ever. Additionally, I spent a fraction of the time sitting (like 2-3 minutes versus 10-15 waiting to empty). Either all of the changes I've done in the past year caught up with me, or the Nopal really did help me. I did have a few instances of blood, but no pain, urgency, rumbling, etc. I've eaten salads 3 times a day for 3 - 4 days, tacos, and stuff that would always give me urgency, cramps, and the like - nothing (of course I just jinxed myself!).

I have not decided if I'll make it a routine to take it every few weeks, or maybe daily. I thought I'd quit to see if it's something I can use when my gut feels bad or start flaring versus a daily supplement.

Thanks to all who have given their feedback! This definitely helped me a ton and I really hope it'll help you, too.

Multiple BM's could be IBS and food-related trigger. Keep a food/drink journal and see if that is what is causing this. But that's good news on no bleeding or D.

Humira gave me terrible joint pain. I cold barely walk after the 3rd round. I had to stop them and now I am waiting to see a Rheumatoid dr. Humira not worth the pain for me. I would rather have a flare from UC! I am on nothing for UC until I find out what the Humira did to my body. Every joint hurts so bad, I can barely function. Scary Drug!!!

Interesting,,, will check out