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Crohn's colitis- any relief?

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Posted 2/25/2011 4:06 AM (GMT 0)
Hi everyone, just thought I'd weigh in here.

I too have crohns colitis in my entire colon with my rectum affected as of late. Had it for 11 years now. Tried everything just about, including asacol, budesonide, foams, 6mp, humira, remicade, cyclosporine, cipro, levaquin, prednisone, etc. Most have given me terrible reactions. The only two left are methotrexate and immuran but based on my reaction history, I'm not positive about either. To be honest, I haven't been in remission for over six years. Nothing seems to work except high doses of pred.

I am interested in helminth therapy right now, whereas before I would never think of taking worms, now I'll try anything.

I'm trying to hang on to my colon too. But, am starting to want to have a better life now rather than waiting for a cure that will might or might not come.

But please keep me posted on the bee propolis and LDN. Those both seem worth trying. Wishing everyone the best.
Posted 2/25/2011 4:23 AM (GMT 0)
dietcoke- Have you tried the Rowasa enemas paired with Cimzia? Bee Propolis is still working for me, paired with Cimzia and Lialda. Your not on any Crohn's maintenance meds right now? If you are tired, maybe it is time for you.
Posted 2/25/2011 4:37 AM (GMT 0)
Mesalamine, which is the active med in rowasa, put me in the hospital for two weeks. I am seriously allergic to it. I think lialda is the same too. I haven't Tried cimzia yet because I had terrible reactions to remi and humira.

Right now I'm only on 20mg of pred which is not doing much. The plan was for me to go on cyclosporine for three months then ween me onto immuran which would be my maintenance med. But the cyclosporine didnt work, so now were trying pred but I think the dose is too low.

Bee propolis looks interesting!

I am now interested in the bee propolis.
Posted 2/25/2011 12:47 PM (GMT 0)
Day 3 on the bee propolis....a little less blood, but urgency and frequency pretty much the same, maybe slightly worse. And just developed a new fiistula (ouch) though it's obviously unrelated to the propolis.

Probably going to up the pred to 45mg this weekend for 2-3 weeks and hope for the best... and deal with the side effects. Any port in a storm.

Diet coke- I've been on most of the same meds with similar (ineffective) results and I too seem to be stuck with a couple choices. My GI did mention promising results with an antibiotic called xifaxan - it apparently will not be absorbed until it reaches the colon, making the delivery of the medicine more effective. It's very new, but worth checking out. I tried it about a year ago but no luck for me.
Posted 2/25/2011 1:31 PM (GMT 0)
Mogulz- Too bad the Propolis is not working for you! Everything with this DD seems so individualized. Maybe LDN? I am awaiting an order of LDN from India. I figure I will have in on hand in case the Propolis stops working. My GI will not prescribe it so I will go at it alone, if needed. I can do my own compounding.
Posted 2/25/2011 1:39 PM (GMT 0)
dietcoke- I can understand allergies! When I was first diagnosed, I had allergic reactions to nearly everything I tried. Luckily I am not as reactive as I used to be. In fact, I am able to tolerate the Rowasa enema now which I was unable to do before. This is a weird disease and I keep hoping and praying for a cure soon! I am keeping my eye on the probiotic that recently hit the news. http://www.medicalnewstoday.com/articles/215298.php
Posted 2/26/2011 3:43 PM (GMT 0)
mogulz - Yes I did try Xifaxan. Unfortunately it didn't work for me. Actually the only antibiotic that did work for me was Cipro and it was the only drug (except Pred) that has worked at all for me (hence the individualization of this disease.) I was in remission for 4 years with it. I am a believer in antibiotics too, I just can't seem to find any others that work.

The Bee Propolis sounds interesting. But, in the meantime I will unfortunately have to up my prednisione and be crazy and ugly. Well, the uglies come after I get off the pred for some reason.
Posted 2/26/2011 3:46 PM (GMT 0)
I have not read this whole thread sorry. Have you tried a food diary taking careful notes of diet ie cause and effect?
Posted 2/26/2011 3:52 PM (GMT 0)
To be honest, I haven't done a full diet diary with cause and effect while on my regular diet.

It literally seems that everything affects me. I was on SCD for a while and did keep careful notes about everything that I ate for 4 months. It just felt like there were no similarities, and everything I ate affected me, even water and broth.

I suppose I should try it again.

FunGuy - have you had success with this and changing your diet?
Posted 2/27/2011 4:15 PM (GMT 0)
I don't practice what I preach I'm afraid; just seemed like something you had not done that could help you. I have noticed some foods that bother me but usually only if I eat large amounts. In moderation just about anything goes, for me. It may be worth a try for you.

Will you try the worms?
Posted 2/27/2011 11:09 PM (GMT 0)
Day 5 on the bee propolis... I've starting go grow wings, sticking my nose in random flowers and buzzing uncontrollably. ;-)

Started 45mg pred/day on Friday, which just happened to be one heck of a day (5 different public restrooms, 12 BMs, ...and fistula was painful!) "Luckily", after a day like that, at least things calm down because there's nothing left.

Funguy - Have played around with diet, but nothing dedicated or extreme. The inflammation is so far at the end of the line, not sure it would make a difference. Might consider the worms if this course of prednisone and methotrexate maintenance fails.

dietcoke - glad to hear the cipro is helping you!
Posted 2/28/2011 3:59 AM (GMT 0)
Lots of advice on here... One thing that's helped me a lot - I believe kept me stable and out of the hospital - is a compounded budesonide suppository. It's not a typical medication and must be filled at a compounding pharmacy. they basically take the budesonide (entocort - metabolizes more quickly leaving less steroids side effects/damage) and make it into a waxy suppository. This puts the steroid exactly where I need it. Enemas helped some, but not with my rectum, which is where most of my bleeding happens. It's also the inflammation that triggers the tenesmus (HATE that!!!!). Having the budesonide suppositories to use on a daily basis puts some of this at bay. The enemas didn't seem to "stay" where I needed them. As they are liquid and would travel further up the intestine, not staying in the rectal area to control that inflammation.
Posted 2/28/2011 5:25 PM (GMT 0)
As for me, I will try the worms.

I have Immuran and Methotrexate left - that's it on the traditional side.

I have been following the worms yahoo group and it's yet another option. A year or so ago, I would have never considered them, but now, since there isn't much left for me, I will definitely consider them, most likely try them. Why not, right?
Posted 2/28/2011 6:26 PM (GMT 0)

mogulz said...
Day 5 on the bee propolis... I've starting go grow wings, sticking my nose in random flowers and buzzing uncontrollably. ;-)

Same thing happend with me!!!  And I can pollinate like the dickens now too!! devil

 

Seriously though, since we're all so different it may take some longer than other to notice any improvements, if any at all...it sucks that everything doesn't work for all of us.

Posted 2/28/2011 6:29 PM (GMT 0)
ssr5599,

I too had many yrs of issues with tenesmus as well so I know exactly how you feel! It wasn't until my system adjusted to the fibre supplements that my GI recommended I take daily and indefinitely that the tenesmus finally improved/went away...the only major symptoms I still have to date are frequency (even though it's basically 5X/day and when it "comes" I cannot hold it properly/long enough like I used to before I got sick so it's an instant run to the toilet when the urge hits.
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