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Posted 10/4/2013 7:37 PM (GMT 0)
well, i'd been feeling awesome since my july/august hospital stay where I was put on Imuran and prednisone.

i'd been doing fun things like going to karaoke bars at midnight, rock climbing, seeing a huge rubber duck downtown, having my bday party, hayrides, pumpkin picking, movies, running in the park, pool halls, making t shirts, going on DATES (like 10! haha) and basically being totally normal.

I finally got down to 1 mg of prednisone today and low and behold... blood.

I started crying in the bathroom because I hadn't seen blood since august. I felt like punching something. my only symptom lately has been gas- really BAD gas ahhhh not sure if it's been from prednisone, but it was better than all the other crap with UC. I would take only gas in a heartbeat.

anyway, I called my doctor and he ordered blood work so i'm going to get that now. also said to go back up to 5 mg of prednisone and if blood work is okay, we can increase the Imuran.

hoping my blood work isn't horrible but I will post the results once I get them.

I've still been coming on here and reading even if I don't post every day. just felt good not to complain to you guys for a little while haha

 

Posted 10/4/2013 7:50 PM (GMT 0)
This disease is as evil as the pred. Hope you go back to "normal" soon. Good thing you jumped on it fast.
Posted 10/4/2013 8:15 PM (GMT 0)
50 mg imuran...where do you think you're going with that. That dentist guy that's in perma remission from uc was taking 200 mg and he weighted around 160 lbs or so. I know you're low weight, but crank that sh**t up man, 50 mg ain't going to cut it.
Posted 10/4/2013 8:19 PM (GMT 0)
Good thing you left the hospital with your colon intact and not the bag, huh? I think you'd almost written your colon off as gonzo! Uc is a funny beast indeed,
Posted 10/4/2013 8:22 PM (GMT 0)

"Good thing you left the hospital with your colon intact and not the bag, huh? I think you'd almost written your colon off as gonzo! Uc is a funny beast indeed,"

Well, the docs couldn't. Every time, they came close to her, she went like this:

http://i.telegraph.co.uk/multimedia/archive/01681/Snarling_1681189c.jpg

smilewinkgrin  

Posted 10/4/2013 10:32 PM (GMT 0)
I feel you! I am so glad you had a reprieve e though! It gives you strength! You will gat back!
Posted 10/4/2013 11:06 PM (GMT 0)
That certainly is frustrating, sorry to hear that. You will get better, I know it.
Posted 10/4/2013 11:30 PM (GMT 0)
Ugh. Been there way too many times. But I am glad you have been out enjoying life!

Are they doing a prometheus test? I was tiny too and my therapeutic level of Imuran was 150 mg. Apparently I'm a fast metabolizer.

Hopefully bumping back the pred to 5mg will help.
Posted 10/4/2013 11:37 PM (GMT 0)
thanks guys!!!

somedude, nice dog face. that was totally my mom!

pink, yeah they are doing that test. he started me on a low dose of Imuran because I had very high liver enzymes on 50 mg of 6mp.

it would be awesome if my blood levels were good so I could bump up Imuran.
Posted 10/4/2013 11:41 PM (GMT 0)
How frustrating! Hate this dd! Glad you got on it fast and hope it gets resolved asap.
B
Posted 10/5/2013 12:43 AM (GMT 0)
:-( !!!!

so glad you've been out having some kick-ass fun tho !
Posted 10/5/2013 12:57 AM (GMT 0)
That's too bad banana. I've been there, i got down to 2.5mg and had an awful relapse... I had to go back up to 40mg. I think you should try to keep thinking positive. Of course, my opinion doesn't mean much. I've seen a lot of blood here and there and I've managed to pull through. Blood and gas doesn't necessarily mean flare up. I was so gassy the other night, people around my neighborhood probably thought there was major gunfire in the alley. Miraculously I am back to normal. Could something else be the cause of the blood? Perhaps a hemmie? I've been straining a lot lately and I know I am prone to fissures, I see that I will get one soon. I am going to be hoping the best for you. Are you in the therapeutic range for imuran? are you still on 50mg? that's a really low dose of imuran. I think average is 100 or 150mg. I have had some awful blood work, I mean like wbc @ 1 and I have pull through. Please don't think the worst. things can work out even when they seem really dismal.
Posted 10/5/2013 4:00 PM (GMT 0)
well, I think it's just my period. The last one I had was in February 2011 so I just wasn't expecting it to come. I was diagnosed with UC in January 2011 so I figured having this disease made it impossible for me to get it again.

blahh I have lots of cramps, a headache, hot flashes. geez. it's like my body has been building this up for a while. it's like my whole abdomen hurts, even my back.

I guess my karaoke plans are out for tonight haha

all I wanna do is lay down with a heating pad and watch tv until it goes away.
Posted 10/5/2013 4:37 PM (GMT 0)
Getting your period back is an excellent sign of returning to health. As miserable as the period pains are, I'm really glad for you it's that.

I know NSAIDs are contradicted with IBD, but I used to get bad period pain for a day or two and two ibuprofen would knock it right on the head, tbh.

Meanwhile, sounds like you've done more stuff in the last few months than I have in the last 20 years :p
Posted 10/5/2013 5:37 PM (GMT 0)
Definitely a good sign to be getting a period again. I would not risk the NSAIDs myself; with all that you have been through better to try to relax and take it easy than risk any damage? On the subject of NSAIDs, I did the 23andme DNA test recently and it highlighted that I was at risk of gastrointestinal bleeding from NSAIDs so I will doubly be staying off them now.

Have you tried acupuncture ever? I don't think it really helped my UC but it had an amazing effect in reducing period pain and making the cycle regular for me.
Posted 10/6/2013 12:02 AM (GMT 0)
Period is much better than flare!! I hope you're back to normal after it passes
Posted 10/6/2013 1:13 AM (GMT 0)
i always deal with the pain and avoid painkillers. i just breathe through it and tough it out. i've been bleeding a lot so i will be annoyed if i get anemic over this. can periods make you anemic?? i figure since it's supposed to happen to women's bodies that it won't, but knowing my history, it probably will. i think it's just built up from so many years not having it. i used to never get cramps so i'm surprised how miserable and very CRABBY i am.

NCOT, i take advantage of every time i feel good!!! i know our days aren't promised so i always make the best of it.

LL, i've never tried acupuncture. i know it's pretty expensive.

NSSG, oh yeah, much preferred over a flare!
Posted 10/6/2013 6:32 AM (GMT 0)
I'm glad it's just your period and I agree it's a good sign for your health.

If you get anemic over this, I don't know. But have your blood levels checked after. you can also take precaution and eat meat or liver. I usually take iron pills but I know they hurt your tummy. My blood has been fine lately even with regular periods and I tend to me more anemic too.
Posted 10/6/2013 2:46 PM (GMT 0)

Somedude said...
50 mg imuran...where do you think you're going with that. That dentist guy that's in perma remission from uc was taking 200 mg and he weighted around 160 lbs or so. I know you're low weight, but crank that sh**t up man, 50 mg ain't going to cut it.

I don't know what you mean by Perma remission; there is long-term remission but no such thing as permanent remission, the closest we have is J-pouch surgery to any type of permanent control of UC.

When I was on 6-mp I was 200lbs but my body could only metabolize between 25mgs & 50mgs of 6-mp. I would alternate days between 25mgs & 50mgs (average 37.5mgs). This kept me in remission for about 2 years. Therapeutic doses are not by weight but by how your body metabolizes the Imuran/6-MP/Aza, most GIs will start you out between 50mgs-100mgs and adjust after 3-6 months if necessary. It takes upwards of 6 months for Imuran/6-MP to build up in your body to start working fully.
Posted 10/6/2013 3:37 PM (GMT 0)
ks, yes, you're right. that's what my GI is doing. he started me on 50 mg so my liver enzymes wouldn't be elevated. we will increase if possible, but no sense in started me any higher and just having to stop it immediately.
Posted 10/9/2013 11:54 PM (GMT 0)
well, looks like i'm screwed uhhhhh

bloody diarrhea and cramps are back. I bumped my pred back up to 5 mg and doubled the Imuran.  I hope it will kick in because I have zero options left.

my period ruined everything. I am FURIOUS that I got it back. I was doing fine before that happened.

I just hate this disease.

my birthday party is on Saturday and we are having like 25 people over. it's hard to act happy when everyone is here on top of me and I just wanna lay down.

my diet can be the most boring, super strict plan around and I can be on all the meds/supplements and UC will still go "haha I will outsmart you!!! no matter what!! you will lose."

can't we just annihilate this mother effer already?

Posted 10/10/2013 12:03 AM (GMT 0)
UC is very intelligent. Maybe there's a clue there. Sorry you're doing worse. Try to have a happy birthday.
Posted 10/10/2013 12:04 AM (GMT 0)
What about calling your doctor and asking for one more course of High dose pred and tapering again... It'll kick things back on track if you can tolerate the side effects and well.. if he'd go along with it. I have done this back to back thing twice with good success - well again, aside from having to endure the pred effects twice in a few months. And well, it's not good for you btu with your lack of other options at the moment I would tend to think he might go for it. It kept me out lading in a major flare - that was really the only up side..
Posted 10/10/2013 12:30 AM (GMT 0)
Along with the increase in prednisone maybe you could go on a brith control continuously. I take mine that way and it helps keep hormones at a nice even level. That way you won't have hormones as a UC trigger and you can get back on track!
Posted 10/10/2013 12:33 AM (GMT 0)
gary, I don't get it, but I guess nobody else has figured it out either. we need more geniuses in the world.

mark, that seems like a bad idea haha even though i'm 1000% positive my doctor wouldn't care at all. he's be like "go for it." I've already been on prednisone since july. if I add another 2.5-3 months, that would be 5-6 months of pred. I already have osteopenia and cannot get osteoporosis at 24. just seems like I would be delaying surgery and possibly losing function of my adrenal glands. I don't wanna permanently destroy my body for the sake of my effed up colon.
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