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Ulcerative Colitis
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Posted 3/10/2015 1:59 AM (GMT 0)
No be positive!!!! I was thinking about it yesterday. One difference is our age. I'm 21:) but then again all in the same boat-right?
I just wish the urgency would go away. I'm nervous there is still lingering inflammation-in the rectum. That's where it all started. Started like this-no bleeding just feeling of always needing the bathroom. I find that when I'm relaxed, or excersizing, I'm in a much better state-as if I don't have this disease.
Posted 3/10/2015 2:11 AM (GMT 0)
Sephora have you tried enemas? That could hopefully help wipe out that last bit of inflammation and help with urgency. I have used them with my imuran with no problems. Although you've probably been around enough for them to have been suggested to you by one of us! Hopefully you'll be able to eat veggies when you reach remission :)
Posted 3/10/2015 2:14 AM (GMT 0)
Hi! Thanks. Ya they've been suggested many times and tried as well. Currently taking a Canasa in the evening. Not helping thought but doing it anyway. Debating if should try steroid enama. Even though GI does not want me to. I see you take aza. How long have you been on it? Has it been helping you?
Posted 3/10/2015 2:21 AM (GMT 0)
I thought Canasa was a suppository? I could be wrong. Enemas will cover a lot more area. I've had good luck with the mesalamine enemas (Rowasa).

Well I've had UC about ten years now and have been on imuran most of that time. It's kept me in nearly full remission (needed enemas for a couple weeks two separate times I think. Just heading off problems when I got constipation/narrow stool) the whole time I've been on it. And no side effects for me either.
Posted 3/10/2015 2:25 AM (GMT 0)
Ya Canasa is a suppository. So maybe I will try rowasa for a little. Currently on 50mg of 6mp. My dose should me 75mg. my GI wanted to start slowly. I'm so happy it works for you! Hope it will for me as well. Could be my symptom of urgency is IBS. But I really don't think so. Only a colonoscopy can tell.
Posted 3/10/2015 2:31 AM (GMT 0)
That's awesome Ele! That's a wonderful remission.

Seph it can't hurt to try Rowasa or steriod, I use canasa during the day to calm things down and steriod enema at night.

I feel progress today but it always seems like one step forward two steps back. Here's hoping tomorrow another good day!

A good day for everyone!
Posted 3/12/2015 6:31 PM (GMT 0)
My blood tests CBC came back normal and I am feeling better than I have in months. A little gas or something but really feel like I am climbing out of this flare. Will start taper next week with budesonide.

Heres to hoping it continues and lasts for as long as possible with no complications!
Posted 3/12/2015 7:19 PM (GMT 0)
Thats great! So happy! Does your doctor plan to increase 6mp? Or leave it at 50?
Posted 3/12/2015 7:22 PM (GMT 0)
He didnt say, but since i seeing improvement and blood ok, my guess is he will wait for next round of blood tests because they are different and show more about the drug itself, like how much is in me? I am just guessing. We only txted today.

He did say he very happy.
Posted 3/12/2015 9:00 PM (GMT 0)
Glad to hear that DMC! And good advice with suppositories during the day and enemas at night.

Now if only I could poop! (Constipation from surgery/pain meds, which I have quit). Can't keep my eyes open... hope you guys continue to improve :) zzzz...
Posted 3/12/2015 9:31 PM (GMT 0)
I'm glad you're actually getting better, my earlier opinions of 6mp are just that, my opinions. I felt attacked for having that opinion... because in my shoes I see it so differently... I didn't mean to sound insensitive, but we all suffer with this darn disease, and although I am sure there are worse diseases out there, this one is certainly not a small one. I want to become drug free, of all drugs and go live in the woods/mountain somewhere lol.
Posted 3/12/2015 9:49 PM (GMT 0)
I totaly get it Fight and i dont think you were coming from a mean place! You have certain convictions and I think you just want others to see the light! :-)

I hate the drugs, I would love to not take them as yup, there is risk. But we have to choose and I have to work! Bottom line I hope nothing happens to me because of my decision but if it does, well crap, I am already 55 in May and thats a pretty good run.

I just need to stay healthy enough as long as I can to take care of my kid and get her off and running! I sure hope for more than that!

I want you to know if you change your mind, that is ok!!!! I will be here for you!
Posted 3/12/2015 10:14 PM (GMT 0)
Btw, is that stuff you took for acne tetracycoline? I saw a teen the orher day and her hands were blistered from
That! I felt like warning her dad but not sure what u took.
Posted 3/13/2015 2:29 AM (GMT 0)
yes, omg tetracycline, doxycycline, keflex, cipro, literally every antibiotic known to man.. I hate that mans guts and want him to get a taste of his own medicine! I can't believe he would feed a 13 year old endless pills of antibiotics!

I didn't know any better at the time and popped them like candy.

UGH I will never let my children take an antibiotic unless their lives depended on it!

please warn her of the unknown permanent side effects, honestly tetracyclines/doxycycline/minocycline are some of the worst out there

you bring a tear to my eye when I hear you say that, I will be here for you too.

Post Edited (fightUC) : 3/12/2015 8:32:54 PM (GMT-6)

Posted 3/13/2015 3:50 AM (GMT 0)
Omg! I don't know what to do! She is a girl we know thru golfing and I don't know how to tell the dad, I feel like I should say something, :-(. But it's kind of none of my business.

Fight, you can always change your perspective as the facts come in. You could be anti med now, but that could change! I was anti 6mp for a couple of months until I got a second opinion an researched.

I go up and down, it's how we roll.
Posted 4/14/2015 1:39 AM (GMT 0)
It's a month later for me and no blood in over a week! I just had 2nd blood test and dr said we need to leave the dose where it is or it will go too high? So ok we stay at this dose and hope for a long remission.

I just hope that doesn't mean that if it stops working at this dose than I can not adjust it. Does anyone have any ideas what that means?
Posted 4/14/2015 7:42 AM (GMT 0)
Congrats on your progress DMC2012. Guessing your white blood cell count is on the low range of the scale, so you're staying at the same dosage. Can it be upped later? Not sure, depends on your blood test results.
Posted 4/14/2015 10:57 AM (GMT 0)
Glad you are doing so well!!! Don't worry too much about whether you could increase it in the future ... you don't need to today and that's what is important. Enjoy feeling good for as long as you can. Deal with the future when it gets here ;)
Posted 4/14/2015 12:30 PM (GMT 0)
Ok thank you! You are right! Who needs to borrow from the stress of tomorrow? Hey I'm a poet! ;-)
Posted 4/23/2015 3:28 PM (GMT 0)
Well the future is here! I had some blood this morning. Now I dont think the 6mp is going to work but its only been month and a half and i have decreased to 3mg bidesonide! I just been on it since last november and need to get off steriods as i use enema too!

What to do??? Feeling bummed.
Posted 4/23/2015 4:18 PM (GMT 0)
What's left for you to try if the 6mp doesn't work? Sorry, I can't remember your history.
Posted 4/23/2015 5:03 PM (GMT 0)
1.5 months is not long enough to reach therapeutic levels of 6mp, it can take 2-3 months or more. You could get your therapeutic levels tested, via a Prometheus labs blood test. If you're not in range, allopurinol can be added to boost it. I believe dmc can't use biologics due to some hep infection?
Posted 4/23/2015 5:04 PM (GMT 0)
Lots of stuff, just not biologics :-)
Posted 4/23/2015 5:57 PM (GMT 0)
Got appt with gi, will see whats up. Thinking nicotine patch
Posted 4/23/2015 7:17 PM (GMT 0)
I recall my GI saying 6mp could take up to three months to work. I didn't have any luck with it. Hopefully it will fully take hold for you soon. Sounds like you have had improvement on it which I never had so that has to count for something. Hang in there!
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