NEW HERE: I'm 27, mom of 2 and diagnosed with UP. scared.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Aug 2008
Total Posts : 1
   Posted 8/7/2008 6:07 PM (GMT -6)   
I had a colonoscopy yesterday and was diagnosed with UP. I've had symptoms which have increased in frequency and intensity for the last 2 months, including bleeding, mucous and increased BM's, but no pain.
I have been healthy my entire life and have never had any digestive problems, So needless to say, this diagnosis is pretty shocking to me. I had never heard of Ulcerative Proctitis and still don't know much about it. I feel like I'm in the dark as far as what this means for me. I'm trying to research online but have read so much contradictary information. I don't know how I got this, if it's curable, if it gets progressively worse, so on and so on. I have a prescription for Canasa and an appt with my GI doc in a month. In the meantime I feel like I'm in a purgatory, I don't know what this is going to do to my life, the way I live, how many things are going to change.
If anyone has any information, experiences or resources that helped them after their diagnosis, I'd really appriciate the help. Thanks so much.

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 8/7/2008 6:34 PM (GMT -6)   
Imagen, I'm so sorry you needed to come here because you have UP, but so glad you found us. I think you'll find a lot of good information here. You may want to start by checking out some of the links and posts in the "resources" thread. There's a lot of great information there.

UP is a form of ulcerative colitis that is limited to the rectum. It is curable only by surgical removal of the colon (large intestine.) However, the majority of people with UC live normal lives with medication. Be aware that most of us here have especially stubborn cases; the majority of people with UC are out there living their lives and have no need for a support board.

There's no agreement on the cause of UC, but it's believed to be an autoimmune disease, which is caused by the immune system going astray and attacking a part of your own body, in this case the colon. In some people it does spread throughout the colon, in others it remains confined to the rectum (proctitis) or rectum and just the last bit of the colon (proctosigmoiditis.) UC is a disease of flares (when it's active) and remissions (when you have no, or few, symptoms.) It is a chronic disease, but not a fatal one. Most of us continue to work, parent, play with perhaps some adaptations.

Welcome to HealingWell, and I hope this community will help you as much as it did me when I was diagnosed seven years ago.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Elite Member

Date Joined May 2003
Total Posts : 30995
   Posted 8/7/2008 6:53 PM (GMT -6)   
Hi..welcome to the forum.

Yes, it's all scary, but how you deal with it, treat it...etc...can have some impact on living with it.

ARe you bleeding as well?

Did the doc suggest you use the Canasa once or twice a day? Do you have refills for the 'script?

*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Veteran Member

Date Joined Jul 2007
Total Posts : 2148
   Posted 8/8/2008 12:00 PM (GMT -6)   
Hi Imagen,

It is very scary and lonely, but you have found a great site. I tell myself that everyone has something, UC is 'my thing'.......maybe not the best way to think but anyhoo....

I did great for my first 7 years being dx'd as long as I took my meds, but I had to change meds b/c I also have a kidney disease and am having a problem finding the right combo of meds to help me, my situation is pretty unique.

Try to think of it this way, at least now you know and can get on some meds to help you. I met my husband right before I was dx'd and we got married in Aruba and work and play hard. You can do so much, you will start to feel better soon once you are on the meds and most of the time you wont even feel like you have UC.

Any questions definitely ask, this has been such a wonderful place for me!
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 15mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!

Veteran Member

Date Joined Jun 2008
Total Posts : 742
   Posted 8/8/2008 2:58 PM (GMT -6)   
Reading your post was like reading my own biography from 8 months ago. I'm semi-new to this, too. I have UP that has gotten considerably worse since my diagnosis. Don't let that discourage you. I've read in many places that proctitis is likely the easiest form of UC to get under control. You're going to learn a lot in the following months, and its going to be overwhelming and contradictory (as you've already discovered). Unfortunately, colitis and its various forms (including UP) is mostly about trial and error in terms of medication and diet. My only advice is to keep a food diary to see what foods trigger more BMs, etc. and avoid those foods religiously. Your medication won't work if you're eating stuff that aggravates your digestion. Also don't let your doctors rush you into heavy meds like prednisone. Start slow and try to be patient and don't give up on medication that doesn't show immediate results. Its a slow process... aggravatingly so.

One more thing. Try to educate the people in your life (family and friends) about your disease so that they know what you're going through. One of the most frustrating aspects of having UC is that no one knows a darn thing about it. And when they can't give you enough support, we're all here for you, too. :-)

Sorry to meet you under these circumstances, but welcome to the forum. Keep us posted on your progress!
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG (as needed), and multivitamin daily.
Diet/Exercise:  No fructose, lactose, sorbitol, mannitol or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing improvement)

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 22, 2018 3:57 AM (GMT -6)
There are a total of 3,005,633 posts in 329,245 threads.
View Active Threads

Who's Online
This forum has 161790 registered members. Please welcome our newest member, Sachi Rae.
217 Guest(s), 2 Registered Member(s) are currently online.  Details
Steve n Dallas, BOB 46