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Ulcerative Colitis
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Posted 2/6/2015 5:46 AM (GMT 0)
This flare has been a pisher! What scares me is that since it stared begin Nov I have been on steriod rectals every day practically, playing with dose, but a bottle a day.

Also on budesonide, which at first seened to work but now I am back where I started, I am no better at all.

I have a slight rash as well as developed high blood pressure. I take apriso 4 a day.

I thought I would try liada and dr giving me samples.

What would you do? I think I have been using steriods too long, they got me in remission last time so fast but had to use them twice a week, which I stopped, prob caused this flare.

They are not meant to be maint drugs anyway. Other enemas do nothing.

Oh and I use canasa as needed.

Really at a loss here, thanks for advice and ideas!
Posted 2/6/2015 6:00 AM (GMT 0)
look into having surgery. It has changed my life and Im only on step 1.
Posted 2/6/2015 6:07 AM (GMT 0)
That's great AJ! Not quite there yet though. Congrats!!!
Posted 2/6/2015 10:55 AM (GMT 0)
Well...The rectal steroids did the same to me...worked great...then stopped...it's just your body overcoming their power I guess. I'm on oral pred now...which is working...have you tried pred or just the Entocort?

Have you ever tried anything up the ladder? Immunosuppressants? Biologics?

If you are looking for supplement/natural ways...the things I've read with the most success are tumeric, I-glutamine, resistant starch...and I'm trying the nopal water.

Good luck!
Posted 2/6/2015 12:18 PM (GMT 0)
I've never heen a believer in either Apriso or Budesonide/entocort. Apriso is too low of a dosage and budesonide works better on crohns, not uc. What does "as needed" mean for the Canasa? If its not needed now then when is it needed? I don't remember your whole history but based on this post I would try pred, 4 lialda, canasa, and take two packets vsl every day, along with a c-diff test.
Posted 2/6/2015 12:27 PM (GMT 0)
How many BM's are you having a day at the moment?

I think to pull you out of the flare, you ought to stop the suppositories for now and switch to oral steroids for a season. Say, 40mg for 2 weeks then a taper reducing by 5mg each week until you reach zero. Obviously your Doctor will to prescribe those.

While the steroids are doing their work, look to add resistant starches into your diet. I did well working up to 40g Potato Starch powder each day. Also, start taking Slippery Elm Bark powder 30 mins before each meal/2 hours after food. It serves as a "salve" to the open sores in the lining of your colon.

Once bleeding and diarrhoea has stopped, add S. Boullardii, 5mg L-Glutamine each day and an antioxidant of your choice (I like Qing Dai and Grape Seed Extract).

Later on in the game, my own gut responded very well to the addition of Sodium Butyrate caps as well but that could be something specific to me. I'm hesitant to recommend Butyrate as it's expensive and I hear many people didn't have much luck with it.
Posted 2/6/2015 12:52 PM (GMT 0)
Hey DMC, sorry to hear you're in such a funk. :-/

I have to agree with the other posters here in the way I've experienced the meds you're trying. I have never pulled myself out of a flare doing what you're doing. Steroid enemas helped a little sometimes, but then I couldn't get enough momentum to pull through. Entocort was never helpful to me.

I've never tried Uceris, but have you? It's new on the market since my last flare. Supposed to be more gut specific, but sounded stronger than Entocort.

I'd do things people are suggesting:
1. Get on prednisone at around 40 mg and then start the taper while you introduce more helpful tactics.
2. Do try turmeric root; was just in to see my GI Wednesday and he talked about it even.
3. Consider L-Glutamine, but worry about 1 & 2 more.
4. Make any dietary changes that ease things; if there are any specific foods aggravating things cut them out. Kind of guessing you have already.
5. REST: I am not one to judge on this since I've always been so busy in my life, but I've been eliminating stressors one by one in my life and am presently able to take good care of myself. It really makes a difference.

KEY POINT: I have never personally pulled out of a flare without oral prednisone as far as I remember, except perhaps when I was on Remicade. It's a wicked beast, but the results are worth the direction it can get you headed.

List any questions and I'll try to get to them as I go about things in the next day. I hope you feel better soon.
Posted 2/6/2015 12:59 PM (GMT 0)
Also... (kind of remembering extra things I could say here)...

-I had never gone gluten free until December (2 months ago). I'm surprised by it, but I really think it helped me keep things at bay now that I'm off Remicade. I had pains coming back pretty good in my colon indicating it wanted to flare up possibly. Within a week of starting gluten-free the pains went 80% or more away.

-Met a nurse at a doctor's office recently who said her son has UC and what has helped him a ton is going gluten-free. I hadn't told her I was; it was unsolicited advice.

-It was just another thought. Still think prednisone is your best bet, then incorporating turmeric and eliminating trigger foods.
Posted 2/6/2015 1:17 PM (GMT 0)

garylouisville said...
I've never heen a believer in either Apriso or Budesonide/entocort. Apriso is too low of a dosage and budesonide works better on crohns, not uc. What does "as needed" mean for the Canasa? If its not needed now then when is it needed? I don't remember your whole history but based on this post I would try pred, 4 lialda, canasa, and take two packets vsl every day, along with a c-diff test.

Sorry, Gary, but Apriso works. Yes, it's a lower dose, but MORE THAN ONE GI has told me that it's a more effective delivery method, so it's equivalent to the 4.8 g max daily dose forms of mesalamine, in terms of how much mesalamine comes in contact with the surface of the colon. Studies show that it's just as effective as other forms of mesalamine. And yes, I know anecdotal evidence isn't really all that powerful, but I've been on it since June-ish of 2009 and only had one very mild flare during that time. And a scope that showed a perfect-looking colon in 2011.

Anyway, DMC, I also think I'd try prednisone. And are you sure the VSL#3 doesn't bother you? It really gave me problems when I tried it.
Posted 2/6/2015 2:07 PM (GMT 0)
I'd recommend getting on stronger uc medications. Get on immunosuppressive medications like Imuran, 6mp, or aza.
Posted 2/6/2015 2:15 PM (GMT 0)
If you haven't tried the oral steroids than I agree on the prednisone. It may be just enough to kick the flare the other way and let your body start to heal. If it doesn't help you get out of the flare it may be time to look at an immunosuppressant like iPoop said.

During my last flare (and first) we made a switch from Apriso to Lialda and did a prednisone taper starting from 40 mg. It was enough to pull me out and Lialda kept me in remission for over a year until this pregnancy flare started. Everyone's bodies seem to react differently to the 5-Asa release mechanisms.

I hope you get some relief soon!!!!
Posted 2/6/2015 2:22 PM (GMT 0)
Good morning! I was so happy to see these these responses this morning! Great ideas! I have had such an aversion to Pred but I think I have to say Uncle and bite that bullet. I am going to get the smallest, shortest course. I think that is sound plan. I just need relief and the headaches are bad, I believe now from enema, but it's getting so hard to tell what is dong what to what! 🌺🌺

Also liada. Gonna get that sample because sometimes a type of pill does just stop working?

Canasa when I start to feel tenesmus, it's the only time I use it and now after two more refills I have to pay full price 1000 for it! My deductible. Crazy

Seems VSL is the thing that always calms my grumbly tummy and makes that better.

Gonna try to answer questions in no part orepder;

Entocort isn't budesonide I think. Have not gone up the ladder but 6mp is my next option, I cannot take biologics because I have liver issues and I need to clear that up, working on that too.

I can't really say I actually have Bms, maybe one good one, mostly looks like sloughing off blood and tissue unformed. 5 times.
I fairly gluten free, I take tumeric, I am afraid of glutamine, again liver issues, but I have some,,
I need to look up resistant starch. I don't know what it is.

Thank you so so much!!!!!
Posted 2/6/2015 2:28 PM (GMT 0)
"I fairly gluten free "


if you have an issue with gluten, you'll most likely never figure it out if you don't actually do NO GLUTEN - you really can't just dabble in it -
Posted 2/6/2015 2:40 PM (GMT 0)
I know you ate right Stud, I tested negative for celeacs so that is why I don't take it as seriously as I should! I just thought too much wheat and processed food can't be good. I will try to do better!

Okay I am such a chicken but I am going to ask for a two week course of pred.

Last time my dr did give me it and I freaked out and quit taking it at 5 days! I just stopped. At that point something worked p, either the pred or the apriso kicked in.

I think it was just that quick hit of the dreaded pred. So I think the smallest dose for the shortest time might be worth a try. And start liada which is new to me.

Anfd really gluten free.

Off to the pot, nothing good this morning - terrible!
Posted 2/6/2015 2:49 PM (GMT 0)
Entocort *is* budesonide. But unless it is the extended release, a lot get into your blood.

6mp could be tricky if you have liver issues because it has to be monitored for liver toxicity.

I like Lialda, but have not really tried a lot of others. I had a little Asacol, and a short stint with Pentasa.
Posted 2/6/2015 2:52 PM (GMT 0)
" I tested negative for celeacs "

don't mean sh!t in terms of gluten intolerance !
Posted 2/6/2015 3:00 PM (GMT 0)
dB yes, sorry that is what I meant to type. IPad fingers. I know you are right to Stud man.

Side note: the cost of treatment for liver is about 100.000 and I am working on getting auth. I need to clear that in order to go up the treatment chain for UC.!! ;-(

So I ask my dr for Pred And pick my samples of liada then I will come home and cry because this sucks and I am beat up (like we all get) I just need some relief.

I just want to say that they did not have a cure for my liver disease, well they did but it wasn't 100% and it was bad!!!!! I waited long enough and now there is a good one!

It gives me hope that someday maybe there will be one for others with UC! Hope!
Posted 2/6/2015 3:40 PM (GMT 0)
Some good suggestions in this thread.

- Kevin Watson suggested taking glutamine up to 5 mg, but I think that was a typo. The therapeutic dose for chronic illness seems to max out at 5 g, though you'll have to experiment and start at 1 g. I don't think it should effect liver function, since it is an amino acid. You could try whey protein with added glutamine since that has all the necessary amino acids for muscle/colon repair. Whey is protective of colitis in mice studies and it augments healing for those with colitis.

- Another option is bone broth for the glycine and proline amino acids.

- I think gluten intolerance is turning out to be a bit of a misnomer these days, so it would therefore be incorrect to say gluten free is the way to go. I think a few recent studies would suggest that it is modern wheat, along with its processing methods and lectin proteins that is problematic for those who don't have celiac disease.
Studies show switching to the ancient strains of wheat (or eliminating it altogether) decreases the common inflammatory markers and reduces IBS symptoms in the normal population. So, at best you will be doing your body a service by eliminating the modern variety. As an example, my colon loves wheat, but I know it screws me up mentally and causes some agitation issues. This is partially due to the inflammatory mechanism of the lectins that occur when it is hybridized and laced with the herbicide glyphosate. It may also be genetics since processed foods are not in my lineage.

- You say you have liver issues, but the liver is turning out to be one of those organs (along with the colon) that can regenerate function. Have you looked at Dr.Burt Berkson's work with LDN and alpha lipoic acid? He was invited to speak at NIH about some of his revolutionary work and those are on youtube if you are interested. I think it will take a complete lifestyle change for your liver to heal. It is entirely in the realm of possibility for the body to heal and regain function.

- Out of all of those, I think stress reduction is the most important. Are you sleeping well? Is your job stressing you out? I recommend meditation, mindfulness, yoga to ease some of those things. While there are no studies of meditation curing IBD, there is quite a bit of evidence that it helps IBS, anxeity, depression, insomnia, adrenal function. Jon-Kabat Zinn is a good place to begin. He has some nice books and audio tapes (also on youtube).

Good luck.
Posted 2/6/2015 4:06 PM (GMT 0)
Thank you guard, yoga has been on my radar, I bought a dvd and still need to find the time. I know it's an old age excuse.

Waiting for my dr office to open to go pic up samples of liada, I hope he gives me a couple weeks worth!!! Not sure if he is around to write pred pres this morning.

You know my butt has been sufficiently kicked when I agree to the Devils tic tac! 🌝🌝🌝🌝🌝🌝
Posted 2/6/2015 5:15 PM (GMT 0)

DMC2011 said...
I know you ate right Stud, I tested negative for celeacs so that is why I don't take it as seriously as I should!

I've tested negative to Celiacs twice now and still find gluten-free to help!
Posted 2/6/2015 5:21 PM (GMT 0)
I would try lialda, always worth trying another 5ASA. I would also try uceris instead of entocort but I would prepare for prednisone because it may come to that. If it does, i would consider 6mp/imuran. You most likely will not be able to taper off pred without symptoms reappearing if you don't get things in check with Asacol/Lialda + uceris.
Posted 2/6/2015 5:29 PM (GMT 0)
How do you feel about biologics?
Posted 2/6/2015 5:39 PM (GMT 0)
I can't take biologics (i know its hard to read the whole threads sometimes).

Ok I am going to do one thing at a time. Just change to liada today and keep everything the same until samples are gone.

Dr wasn't there to give pres for pred.

I am so frustrated, his receptionist told me he doesn't think it will work. I told her what we are dong now isn't working either. She said give it time and I said it's been since the end of Oct you have no idea what it's like. U don't have it.
Posted 2/6/2015 5:49 PM (GMT 0)
maybe LDN?

What exactly are your symptoms?

q
Posted 2/6/2015 5:57 PM (GMT 0)
I've thought of ldn many times. UC symptoms blood and mucus with tenesmus and const. You know the normal love stuff. Have to go lots in the morn, no good poops.
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