Med spectrum help

Hey everyone. Had Togo on pred in desperate situation last week where I flared worst ever, lost 8 lbs in 5 days, bathroom every ten minutes, tons of blood, d... Made an appointment with a GI (emergency appointment was just with general surgeon bc I live in a very remote area) for Monday and am trying to arm myself with as much information as possible to formulate my new RX plan. Had tried alternate route which nearly worked but then backfired. I want to taper off pred ASAP (worked immediately with no side effects thankfully). Here's my question I believe there will be some very helpful responses, can you help me with the order in terms of strength/severity of RX meds? Ideally I'd like to try to move to a lower rung medicine since I know I was so close without any if that makes any sense? Previously was on asacol and canasa. Would like to hear about other options, I see lialdia and ldn written a lot here, are those less intense? Any input is greatly appreciated, just trying to navigate the options prior to talking with the new doc, thanks! Also, on phone so hard to change signature tonight but as of today discontinued three herbal supplements to chill out with all the stuff I have been taking: CCHerbal, triphala and inflama-GI. Thanks!

Lialda is similar to Asacol. It has the exact same medicine inside, just a different delivery system. If you are not intolerant to it, it is very safe. Why did you go off Asacol in the first place? As bad as you were recently you may want to rethink getting off pred ASAP. I'm not advocating being on it for long but it can help heal your colon until you taper off. It may be to your benefit to stay on it long enough to heal your colon better. Of course once off you will get worse unless you have a good maintenance therapy in place already. LDN is very safe also but is often off the radar screen for most doctors and they won't prescribe it. I believe it definitely works in a handful of people but it doesn't seem to work in many.

It is so weird that you were doing so well on the CCHerbal and then all of a sudden the floor just fell out. Can you think of anything at all that you did differently at the time that could maybe be responsible? Just some random thoughts that may or not mean anything at all:

1. Are you sure the paleo is not making you worse?

2. Even though exercise often seems to benefit UC, are you sure this exercise isn't putting a strain on your GI tract, making your ulcers and UC worse?

3. What probiotic are you taking and for how long? Some probiotics can actually make you worse.

4. Fish oil can help many (not me) but it seems like I have seen those where it made them worse.


If you didn't know, there is a resources thread at the top of the page which lists many treatments, both medical and natural.

@gez Thanks for sharing your experiences with lialda and pred. Sorry to hear about the side effects you are getting with pred but hopefully you can taper off soon.

@gary I firmly believe paleo is the way for me to eat. The probiotic and fishoil I take seem to be quite safe and do not raise red flags that I went and ordered something too extreme one way or the other. Maybe I'll upgrade to the vsl3 soon, that seems to be very popular on this forum. I have toned down my exericse considerably and am just sticking with my daily yoga at home and gentle walks. Hiking is not happening since I'm not comfortable being away from the bathroom that long yet...I'll see what meds this new doctor proposes on Monday, if only I could have you all on speed dial to check in during the appointment :) I'm curious how much additional damage was done with this last flare, when I was originally diagnosed it was just proctitis with the last 4cm or so, I never had blood like with this last fare, wonder if it's worse now, maybe he'll want to do more tests, I only ever had a sygmoidoscopy before. And as for what really caused this flare after me doing so well, it was extreme, extreme stress. I went very near crazy with this job news/stress my husband was going through and the days coincide exactly with the flare. He was offered a job then it was put on hold when they were going into a background check and I thought we lost it due to an old dui conviction (it's a big opportunity and huge jump for our family). We were just waiting and waiting to hear for days, and I was robo-checking emails all day long to see if there was news and got so emotional and depressed that something that happened nearly 10 years ago could take away the opportunity of a lifetime for us. Luckily, the company is smart and did not let that keep them away from the best candidate (my hubby!) and we are officially moving and have the new job this week. I keep going back to how crazy I got about it those days and am going to work even harder to be smarter emotionally about what I can control and what I can't and just relax more. I thought was good at stress reduction but that whole situation just brought out the crazy and that brought on all this nonsense I'm dealing with now with my UC flare. So stupid. Live and learn, right?

@fruitgirl thanks for the input, I hadn't had to do enemas before but maybe that will be a better option if I did in fact cause more damage upstream this time. Thanks also for sharing the link of the classes of meds, I'll definitely research through that.

@quincy I'm just wondering since this flare involved a lot, LOT, of blood and extreme cramping, symptoms I never dealt with before, if that means possibly my UC got worse and moved up the colon. I have no idea, maybe it's just down and low and still just a few CM, that would be great. I don't know how the symptoms relate to the damage...

@jc CCHerbal did turn the corner for me and I reached near remission until the all time ultimate flare up hit last week like a bat out of hell. I still believe its a good herbal remedy but what happened to my body last week was beyond herbs. I'm keeping the CCHerbal and will have it in hold/stand by and if/when I get back to a place when I'm comfortable I'll likely reincorporate that along with the others I was using. For now, scared straight to regular RX meds.

I forgot about the stress you said you were having. I'm sure that is the main thing that did you in. When I first came down with my UC 3 years ago it was right at the very same time I was taking broad spectrum antibiotics but I was also experiencing the worst stress I had ever gone through in my life. My work world was imploding on me. I had an extremely large project I had to accomplish in an extremely short period of time or my life was going to be destroyed. It was so bad lawyers were involved costing me a bunch of money. In the end I was successful and came out of it smelling like roses, that is roses that now had UC.