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Posted 6/20/2011 4:11 AM (GMT 0)
I just wanted to say that I was convinced that I needed to be on enemas nightly but I have been on every other night for a month and couldn't be doing better. There was some dispute with my doc over enemas vs. canasa, but I really disagree. I think it's the enema that is doing the trick. I'm not doing Canasas (and I really don't like doing them)

I'm also avoiding stressing myself during exercise. No endurance tests.

And, I'm keeping up on my psyllium husk.

I stopped turmeric, reduced probiotic intake (money issue).

In general, I've avoided psychological stressors. I went into therapy and it's helped me not be so negative .

So just wanted to let you know that things are going pretty good.
Posted 6/20/2011 5:29 AM (GMT 0)
You've come a long way Ellen...that's a balance you're finding regarding what's working for you.

I think the enemas are a better med choice...it's OK the doc disagrees, but he's still writing the prescriptions for you...which means he still is learning that they work (long learning curve for some of them maybe?).

At the first sign of anything wonky..and you'll know..up the probiotics. If you need to, up the enemas.

That's the management...it does get better as you go along.

Therapy helped me too...but for other stuff...I still have my own issues, but it's a small pool regarding support. I don't expect it, just interesting who opts out during the struggles. Sometimes it's easier to just say all is OK.

Keep well,
q
Posted 6/20/2011 7:07 AM (GMT 0)
If you pull out the enemas a little, everything gets coated. He seems to think that Canasa sits there and melts whereas enemas don't coat as well.

WRONG!

I was going over some of my circa flare posts and I was in desperate straits and a real nut job. I think that's what this board is so good at, carrying people through the initial crisis.
Posted 6/20/2011 12:21 PM (GMT 0)
I'm glad to hear the enemas are working! I've been begging my GI for enemas for weeks. I'm on the suppository, and now on prednisone, but I just filled up the toilet bowl with the most blood I've seen in my 4 years of UC. I'm pretty much at my wit's end...let's hope a phone call today fixes thing.
Posted 6/20/2011 1:27 PM (GMT 0)
mkl11,

...but I just filled up the toilet bowl with the most blood I've seen in my 4 years of UC. I'm pretty much at my wit's end...let's hope a phone call today fixes thing.

Sorry you're feeling this way. UC is lousy!

What kind of diet are you on?

Are you doing any L-GLutamine powder - lik 15 grams +?

Any probiotics, like VSL#3?

Have you given any thought to Transdermal LDN?

Hope you start feeling better :)

Posted 6/21/2011 12:41 AM (GMT 0)
journey- I am glad you are doing well and I totally agree that this board is so great for lots of things, especially helping those with an initial panic during a bad flare etc.

Good luck with the future!
Posted 6/21/2011 6:41 AM (GMT 0)
MK11, why are you begging for enemas, and why has it been weeks? Where's your GI when you're having this much bleeding? My GI didn't really want me on them, but I insisted and he wrote the script right away.
Posted 6/21/2011 12:46 PM (GMT 0)
journey--i don't know! i'm confused as to why he won't even let me try another form of mesalamine when i'm still having rectal inflammation. i've asked at least 4 times, i think. he doesn't want to change up my meds, i think because i'm currently out of state for a few months, but then again he did prescribe me prednisone over the phone...

trying to get into a local GI soon! from what i've read all over these boards, the enemas seem to work really well for some people. the first time he refused he claimed "it wouldn't reach high enough" though i'm not sure what that means...doesn't everything just get absorbed through the lining anyway?
Posted 6/21/2011 1:53 PM (GMT 0)
The enemas aren't meant to go throughout the whole colon anyway, but our rectums are still involved. If you have pancolitis, your sigmoid will be involved too...and the enemas deal with that part.

Oral 5ASA meds aren't enough on their own to reach the rectum....and you could tell the doc well on the flip side, the oral 5ASA doesn't go low enough to deal with the rectum.

That's why you need the enemas. Try to understand that your doc is thinking all or nothing. You need to understand why we're telling you the enemas work.

You're already on Lialda...

Prednisone has side effects and you can say you don't want to use it....he's had you on all the big meds and throws a hissy fit with the enemas. I don't get it.

q
Posted 6/21/2011 11:05 PM (GMT 0)
Yes, my sigmoid has definitely had inflammation is the past--and I believe this time as well.

Unfortunately being on 'all the big meds' wasn't his choice--and I was too uninformed at the beginning of my disease to know any better. I was diagnosed in Chicago (now live in PA/NY), and have since learnt the Chicago-style of treating IBD (I was not at UChicago but I believe this mentality partially developed there) is to treat VERY AGGRESSIVELY from the start. I was put on Remicade within 2 months of diagnosis for MILD IBD. Knowing what I know now, and experiencing this level of sickness, I would have never sacrificed that precious option so early.

Thanks for all your help with this! I am trying to get a second opinion sometime soon, and hopefully this GI can see the benefit of enemas for my case.
Posted 6/22/2011 3:15 AM (GMT 0)
Interesting MKl11, mind you my symptoms are very mild when they do occur currently, but the last time I was in, my GI said if I was at the IBD Center at Cedar Sinai Hospital, they'd have me on remicaid.

What's that about? I thought he was kidding, but now that I read your post, I think not. I'm shocked that they would immediately put someone on remicaid that was on my symptom level. I told my GI that my tipping point for going to the next level which would be 6MP would be urgency.
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