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i give up on alternative methods, going on imuran

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Posted 6/1/2012 7:21 PM (GMT 0)
i have been flaring since 2008. 

i have had improvements but I am at a standstill with getting better.  Still 3-7 bms a day, blood, pain, urgency, isolated patch in sigmoid (was pancolitis in 2008)

Meds I have tried: asacol, lialda, rowasa, canasa, hydrocort enemas, proctofoam, oral entocourt,  1 week of a trial drug of entocort rectal foam, prednisone.   I am going to stay on the lialda and the rowasa as they get me closer to remission than anything else.

alternative stuff i have tried: vsl #3 DS (for 9 months, nothing), jarrows sach boulardi, primodophilus reuteri, benebiotics, homemade kefir, tumeric, boswelia, slippery elm, bee propolis, kefir grain enemas, extra fish oil, extra vit d3, All kinds of diet mod: gluten free for months, lactose free, no processed foods, no junk foods, scd (very briefly), grass fed butter, milk, free range eggs and chicken, avoid all vege oils, etc.    AND NO CHANGE IN MY UC!!!  I do have less bloating and gas ( my suspicions is that i also have ibs and the diet mod helped the gas and bloating but not the UC.)  I gave up coffee, caffeine and  and chocolate, which is the only thing that made a slight improvement ( i had to wear pads everyday for the leakage until i quit coffee and chocolate, then no more leakage but still all the other symptoms). 

oh and the psyllium seed powder capsules help with more organized and formed stools.

I saw my GI dr today and she wants me to start pred and imuran. yes, i know the evil pred, but i am doing it for one month as a bridge to starting imuran since it takes up to 3 months for that to kick in.  she is concerned because this is going on for so long and the usual meds are not working.

i had a short list of things that i might want to try ldn, clay.  but i am sooo tired of trying stuff.  i feel like things that others try and work for thme do not work for me. 

i'm tired of all this, i want my life back. i have seen a number of posts of people on imuran and it seems to help. 

Posted 6/1/2012 7:28 PM (GMT 0)
Wow coffee I have been down the same route,nothing seems to work.
But I am doing somewhat better on no veggie oil,plus fish oil,plus some whey and threonine.
Cant say no nightshades are doing anything different. Have not tried LDN.
Old Mike
Posted 6/1/2012 7:35 PM (GMT 0)

old mike, i am glad you are doing better, you have been through a lot.

forgot to add, i also tried l glutamine for like 2months.  nothing. i also noticed i would have MORE bleeding with some of the alts, like slippery elm, tumeric, propolis, etc. 

i mentioned LDN to my dr today, she knew a little about it and knew they were doing studies on it and she is very interested to see the outcomes. 

I just want to get into a nice looooooooong remission and then if i flare again at some point maybe there will be other new meds to try down the road

Posted 6/1/2012 7:43 PM (GMT 0)
don't look at going on imuran a a defeat. I had been flaring for over 2 years before i had had enough and the Imuran has gotten me to a good place with no side effects.
I was at the point of trying anything and now looking back, it was one of the best decisions I ever made.
Posted 6/1/2012 11:03 PM (GMT 0)
ilovecoffee,

You've given everything a good try, and it hasn't worked.

So now you must move onto to something that will.

I agree with BeatUC.

I wish you speedy reduction of symptoms and remission.

Let us know how it goes.

Good luck.

Posted 6/2/2012 3:52 AM (GMT 0)
ilovecoffee, i have not been on imuran but it could kick in quicker than 3 months. i know when my doctor got me on 6mp, my symptoms decreased in 1 day. it was like an overnight change. i am a light weight and maybe it is because of that but my dosage was 50 mg. i remember he told me at the time to not expect anything because it would take a while, but that is not the case.

i just started ldn 9 days ago and i'll report to you on how it's helping. so far, it's gotten rid of my fevers and headaches. it's also increased my appetite which i desperately needed. i literally mustve eaten over 1000 calories today and it's been a long while since i could do that.

i have also tried all the things you mentioned and it gets VERY exhausting. it's like "what gives?" i really hope the imuran can help you like the 6mp helped me.
Posted 6/2/2012 4:37 AM (GMT 0)
Wow! I read some of your stories and I just marvel at how tenacious and brave so many of you are.

Coffee, I think you'll be doing the right thing to try the drugs, you've already tried 120% of the other stuff. I'm not surprised your pi**ed off with your situation right now

Maybe the medications you are dreading will give you enough of a push over the hump you're on to let some of the other stuff you're trying to do, work.

You'd do well to look at the prednisone and imuran as a blessing right now, not evil. I'm going to send good thoughts your way anyway. Good luck, hold on and thanks for talking about this!
Posted 6/2/2012 4:58 AM (GMT 0)
Poor thing. I am sorry you've had such a struggle, though it sounds like it could be worse... I have tried loads of supplements and I've never had any show significant improvement. What I think has been helping me lately is trying to keep a positive frame of mind even when my symptoms are awful. I am on 6mp but at such a low dose, I can't imagine it is very effective.

I guess you have to do what you have to do, especially if you're dealing with cramping and pain. I don't think I'd go on pred for 3-7 a day if there wasn't a significant amount of pain but that's just me. I'd probably want to try to get things under control with rectals and imuran if you've decided you're going that route.

Did the GI give you any option that didn't include prednisone? Of course, if you can keep the course short as you plan, it may not be the worse case scenerio.

Hopefully you're back to drinking coffee again soon :)

Posted 6/2/2012 6:12 PM (GMT 0)
I feel your frustration. I really hope you'll find something soon which will help you going into remission.
Posted 6/2/2012 6:28 PM (GMT 0)
It's a great idea, I've had nothing but good results from Imuran, and have been on it a long time now. You can't say you haven't tried the emtire gamut of alternative therapies- & look at it this way, if the Imuran helps put you into remission, you can stay on it for a year or so, then try to go off & use alternative methods to control UC AFTER the Imuran does what it should. It's not a defeat, not at all. I hope it works well for you- what dose are you starting at, do you know?
Posted 6/2/2012 6:30 PM (GMT 0)
Imuran is what induced my first remission about 3 years ago.  It was a miracle drug for me and I think is the only thing that kept me from going ahead with surgery at the time.  I am currently having a flare that we can't control with the usual stuff but I am one that certainly recommends at least trying Imuran and seeing how it works, especially considering what you are going through.

 

Posted 6/3/2012 2:49 AM (GMT 0)
Good luck to you Ilovecoffee! Such a great lengthy list of things you tried, some of the stronger meds should help stabilize you!
Posted 6/3/2012 3:43 AM (GMT 0)
I so feel for you. I was the same and really tried to avoid the Imuran/6mp route. But alas I've been on 6mp for a month now. I tried so many alternative things and nothing worked for this flare. I have been fortunate that even though I was diagnosed in 1999 all my past flare ups were pretty mild and responded quickly to Prednisone or went away with alternative methods. Some of them just went away on their own. This year is so different. So far I see improvement in my sxs but still not remission. Hopefully it will just be a little exta time. I just want to give you a hug because I feel for you. I am so sick of trying stuff too...and the cost! I just want to not see any blood in the toilet anymore. And yes hopefully there will be something new after our longggggg remission ;)

Feel better!
Posted 6/3/2012 2:30 PM (GMT 0)
I agree with everyone. Sometimes drugs are a necessary evil. I too would prefer natural remedies, as compared to all the drugs I am on, but it doesn't work for everyone and one of the pros of the drugs is having your life back! You can you eat normally and not worry about the day to day and will you be flaring, etc. I am on Imuran and Allopurinol and recently had some stress in my life/had to go on antibiotics and I just had the tiniest of flares, I'm sure thanks to the Imuran, it didn't get out of control and knock me out for weeks like my last flare (which led to the Imuran). While I don't want to be on these things forever, for now, I think it's the best alternative to surgery and allows me to "normal".

I definitely wouldn't beat yourself up Coffee...especially after trying every natural route you could. Go on the Imuran and then enjoy yourself a cup o' Joe!!!
Posted 6/3/2012 7:54 PM (GMT 0)
Everyone has a different perspective regarding medications....all you can do is try it considering you have one stubborn area that won't budge/heal.

You might not have to stay on it consistently if it's able to heal the area and the other 5ASA take over from there.

Curious what the biopsies of that area state on the pathology report?

q
Posted 6/4/2012 5:20 AM (GMT 0)
I_Love_Coffee: i understand your frustration. Im sorry you are have been flaring for such a long time; it really is about time for you to feel better and enter a lifelong remission :)

I remember you posted a while ago about the kefir grain enemas; just curious did you end up doing more of them? (i recall you saying you tried just one)
Did you do it as per the protocol listed here http://users.sa.chariot.net.au/~dna/IBD/index.htm
Where did you get your kefir grains from?


Sending you healing wishes...
Posted 6/4/2012 11:03 AM (GMT 0)
Been there done that just like you. My flare just kept getting worse and worse month after month. I gave in and started taking prednisone and then as I was tapering off the pred I started the Imuran which I've been on about 3.5 months now. So far so good as far as UC symptoms are concerned. The only problem I'm having is that I'm having some significant hair loss issues right now but I don't know if it's from the Imuran or from the Pred.

If the Imuran works for you, you'll probably need to take it the rest of your life.
I've heard others talk about taking Imuran and going into remission for a long time them stopped taking Imuran and started flaring agian and tried going back on Imuran and not being able to re-achieve remission, but I guess everybody is different.

Right now Imuran is working for me and if my hair will stop falling out and regrow I'll call it a success.
Posted 6/4/2012 3:08 PM (GMT 0)

wow, thanks so much everybody for all your kind words and support.  It means alot. 

Right now I am waiting a couple of days to start the imuran because i have a cold and i want to be over it before i start. 

Conquer UC: In the meantime i was trying the brown rice diet and the kefir grain enemas.  Well I lasted one day on the brown rice only diet(friday), i was starving and kind of feeling discouraged about that part working after everything ive been going through.  but i did decide to proceed with the kefir grain enemas.  I mixed chammolie tea, kefir grain and vit e oil in the blender and so far have done 3 enemas in a row and i have enough to do 4 more (7 days or a week total).  today i had only 2 bm(which is good i guess) but same amount of blood and pain.  i'll do the 4 more and see what develops, and post about it.  i have a really stubborn area that wont heal so i will not be surpried or dissapointed if this does not help.  i got the kefir grains from a hw member.  I can send you my extra grains if you want to make kefir. I should have enough to send you in about 2 weeks, just send me an email.

nssg: i am not wild about the pred but this has been going on for so long and this is only the second time i have ever taken pred in 21 yrs of uc, and its a short course 4 weeks so i think im gonna give it a go.  i think my gi would be fine with me saying no to pred but i think im going to go with her suggestion.

evalou: i am starting on 50mg and was told not to be surprised if she has to raise it. she wanted to start me on a low dose.

quincy: good question, i am not sure i have the results of my biopsies from that area.  must ask my dr.  what are some things to be aware of with the biopsy results?

thanks again guys and huge hugs to all!!!!

Posted 6/4/2012 3:50 PM (GMT 0)
Don't be afraid to start taking Imuran with a cold. UCers do not take Imuran in the doses that compromise immunity; those higher doses are for cancer patients. BTW, I took 6MP for 2 years and never noticed any side effects. Both drugs are very safe in doses for UC.

Sue
Posted 6/4/2012 6:18 PM (GMT 0)
Ilovecoffee-- I don't blame you...it is a long time to deal with a flare and time for you to get a break. You can at least feel that you tried everything else and got rid of the "what if's". I hope Imuran will work great for you! Pls keep us posted.
B
Posted 6/4/2012 7:00 PM (GMT 0)
Coffee let me know how it goes, I feel like we've been down the same road!!! Best of the best to you and chin up, it'll get better ! Hugs!
Posted 6/4/2012 7:00 PM (GMT 0)
i_l_c...I'm wondering what the biopsies stated regarding the depth of the inflammation, the severity, etc. Is it a solitary ulcer and not a "patch"?

I don't know how common it would be for UC to have inflammation patches, especially one that is treated from both angles.

Do you know where exactly in the sigmoid it is? closer to the descending? closer to the rectum?

As usual...just curious wondering why.

q
Posted 6/5/2012 4:56 AM (GMT 0)
I_love_coffee: thank you so much for the offer :) im thinking abt trying the kefir grains enema at some stage...i'll pop you an email if i need grains.
I pray that the kefir grain enemas send you into a good long and solid remission. Four years is a long time flaring it's time things improve for you.

Keep us updated..
Xx
Posted 6/5/2012 2:07 PM (GMT 0)

Qunicy: found my colonoscopy reports from February,  pathology report etc:

Cscope report:  "a localized area of mildly erythematous mucosa was found in the recto-sigmoid colon"

my gi said its about a 4 inch isolated patch of inflammation.   I also had a polp removed at 15 cm proximal to anus

Pathology report:  everything was normal except:

rectum: colonic mucosa with focal hypperplastic change. No evisdence of active inflammatory bowel disease, negative for dysplasia

"recto-sigmoid: Colonic tissue with changes consistant with idiopathic inflammatory  bowel disease with mild activity. no dysplasia seen.

microscopic description: there is colonic mucosa with slight crypt distortion, depletion of goblet cells, and mild acute cryptitis identified. A diffuse inflammatory infiltrate consisting of lympocytes, plasma cells, macrophages and eosinophils involves the thickness lamina propria.  Inflammatory atypia is noted but no true dysplasia is seen."

In April i had a flex sig right before i was supposed to start a drug study, and it showed the same isolated patch of moderate inflammation in the sigmoid as before.  From Feb to April I was gluten free and taking l glutamine daily with homemade kefir shakes, etc etc, with no changes, in fact trying differnt things made me worse.....

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