Am I in full remission?

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Lilacmagic
New Member


Date Joined Oct 2007
Total Posts : 8
   Posted 10/24/2007 10:29 AM (GMT -7)   
Hi I am 16 years old and was diagnosed with UC two years ago and in that time I have had three flares. My first flare I was put on prednisolone 80mg's, and asacol then on my second flare I was put on 40mg's of prednisolone and 75mg's of azathioprine and asacol. This current flare I have just had I was put on 40mg's of prednisolone, 125mg's of azathioprine and asacol. I was put on 40mg's of prednisolone for one week and was told to reduce that to 30mg's however when I did so I went back into a flare so that was increased to 40mg's for an extra two weeks gradually decreasing that by 5mg's every week. I am now currently on 25mg's of steroids which will be reduced to 20mg's tomorrow. However, although I haven't had any loose stools or blood I am still worried I am not completely better. The reason for this is because I have gas pains which I never had when I was in remission and I am also going to the toilet nearly every day or every other day (the stools are hard), although this is probably normal for some people, I when in remission previously was usually constipated and my normal habit was going to the toilet once a week or once every two weeks. This probably seems very unhealthy but that is what was normal for me. I also have a feeling of a very full stomach which needs me to go to the toilet to get rid of the uncomfortable feeling. I have told my doctor about all this but he doesn't seem to find any of this worrying So I was just wondering that although I have hard stools is there any chance that my colon is not completely healed and that when I come off the steroids I will eventually go into a flare. Thankyou, for taking the time to read my post and I am sorry if I am being stupid. I look forward to reading your replies. Thankyou.

Lilacmagic
New Member


Date Joined Oct 2007
Total Posts : 8
   Posted 10/24/2007 10:33 AM (GMT -7)   
I am also very depressed because it just seems to be controlling my life and I can't see there being a cure soon enough, I feel sometimes I can't go on like this and just want to be a normal teenager.

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 10/24/2007 11:15 AM (GMT -7)   

Hi Lilacmagic,

I just wanted to say that you're so young to be dealing with this. I was told I didn't have any UC after 6 weeks on asacol and rowasa and so I quit my meds the day the doctor said it was all gone. Actually he was amazed by my results in 6 weeks. He said I could get off the medication. He was a rectal doctor and maybe he didn't know I needed to take remission dosage. But I knew something still was not right b/c my stools were urgent and not formed. I've basically have been in a flare for two years now. Although, right now, I'm not on medication by a MD, I'm working with a naturalpath.

What caused your UC do you think?


I had the Rocephin shot and 2 weeks of Omnicef, this helped with my bloating and digestion. That was 4/15/07
Had Cipro and Predison for 10 & 5 days, 7/3/07
Colonoscopy & Endoscopy 7/27, Left sided colitis and near cecum (mild)
Had a shot of steriods for my ear inflammation 8/31
Stopped Colozal 10/1/07 was on it for 7 weeks, side effects
On Standard Process supplements, trying a new protocal from a
natural path as of 9/10/07
I belive laughter is the best medicine, I need to laugh more!
 
 
 


Lilacmagic
New Member


Date Joined Oct 2007
Total Posts : 8
   Posted 10/24/2007 11:38 AM (GMT -7)   
Well I got it around the time I was doing my sat's exams and I was also moving house. I am sure UC is down to stress and I stress out all the time. The second flare I had happened around the time I was doing my GCSE's.

Lilacmagic
New Member


Date Joined Oct 2007
Total Posts : 8
   Posted 10/24/2007 11:44 AM (GMT -7)   
and I hate steroids they make me feel so sick and the side effects are just as bad.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/24/2007 12:19 PM (GMT -7)   
Hi Lilac,

Sorry, you are so young to be dealing with this. I was 24 when I was dx'd and thought it was bad enough then.

I'm no expert, but as I did get older through high school, I used to go 1 to 2 times per week and then eventually once a day, maybe it's a getting older thing? As for the meds, the doc's should not just be treating you when you flare up, you should be on a maintenance med to keep you from flaring. For me I was taking the sulfa drugs for 7 years and I would only flare when I did not take my meds when I was supposed to. I'm not sure if you are taking meds in between flares?

I'm not sure about your stomach, but I did have the same thing when I was flaring really, really bad, I would be very hungry and start to eat and feel full quickly and then cramp up and have a bm. Not sure what that was, it's pretty much gone away, but I have other stomach ailments that my Doc's just shake their heads at.

My advice would be to talk to your Doc about maintenance drugs and research every drug you are on for every side effect and hypersensitvity and look into the side effects and see what you can find. It took me 7 years to find out why my ankles were swelling..........

Sorry you have to go through this and I wish you the best. I know how hard it is just to be 16 much less to deal with all this on top of it. It will make you stronger (I always try to find a silver lining).

All my best,
Beth
Beth, 32
UC Diagnosed March 2000
Imuran 100mg 1xday;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 1xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 10/24/2007 1:40 PM (GMT -7)   
Lilac - I, too, am very sorry that you have to deal with this at such a young age.

It's interesting that you mention how your bowel habits have changed. Mine did, too. Before UC (I was diagnosed at 31), I would have one bowel movement every two to three days. After my UC diagnosis, when I am in remission, I have one to two bowel movements every single day. And I do consider that remission. Also, I have more gas now than I ever did before UC, even while in remission.

UC has definitely changed my bowel habits -- even during remission.

I've asked my GI about this, and he said that UC changes your large intestine forever. Remission is good and symptom-free, but it is unlikely that it is a complete return to absolute normalcy. You just have to find what your "normal" is now, after UC.

Good luck to you and hang in there.
Current Medications:
- Asacol (4 pills, 2x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)

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