Question about my Daughter's UC

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New Member

Date Joined Apr 2009
Total Posts : 1
   Posted 4/11/2009 10:52 PM (GMT -6)   
I have multiple questions regarding my daughter's condition.  She is 25.  She was diagnosed with UC from a colonoscopy when she was 17, after several years of trying to get a doctor to take us seriously about the blood in her stool.  Her main symptoms were extreme fatigue and occasional blood in stool, although no bloody diahrrea.  After about a year on Colozal, she was pretty much back to her normal self.
She went to college and quit taking her meds.  And has done very well.  No blood in her stool since the months in high school prior to the diagnosis. Two colonscopies in the interim years, and both negative, no signs at all of UC.  The last colonoscopy was last summer.  What prompted this was she lost 10 pounds quickly without trying, had a rash on her forehead, and got pink eye.  From what we've read, these could be symptoms of UC, but again, there was no diahrrea or even blood in stool.  She has never, not once, had bloody diahrrea before or after diagnosis.
She has run a low grade fever for several months and occasional blood in her urine.  She's been tested for multiple things, nothing has come back positive.  She is a little fatigued, but not to the point that she can't carry on a pretty much normal life.  Her biggest complaint now is the fatigue and pain in her upper back, which I wonder is arthritis.
She has changed doctors and we are still waiting on blood results from an appointment this week.
My question is:  if I hadn't know the doctor found indication of UC when she was in high school, I would wonder if that is what she really has...based on the very serious symptoms I read that most have that she never has had.  Also is it normal to not show any damage to the colon in subsequent colonoscopies?  Particularly since she's not been on medication in about six years.
Is a rash, pink eye, pain in upper back, blood in urine, low grade fever...any...or all symptoms of UC, particularly if there is not the issue of bloody diahrrea? 
I read so many of the symptoms that you all have...and hers just seems different, certainly no where as serious.  We're just trying to find out WHAT it is she has.

Post Edited (stdtsx) : 4/11/2009 9:58:29 PM (GMT-6)

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 4/11/2009 11:47 PM (GMT -6)   
Actually, it's possible she actually does have it. The colon will heal after some time in remission, and some people do maintain long remissions without medications. A very small number never have another flare.

If the original diagnosis was correct, I hope your daughter is lucky enough to be in that small number.
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"

Regular Member

Date Joined Nov 2008
Total Posts : 222
   Posted 4/12/2009 3:55 PM (GMT -6)   
I agree with Judy - the colon will heal and leave no signs of a flare if remission is maintained for a time. I cant remember the percentage, but there is a small percent of people who flare once and then never again - lucky folks. Also, the symptoms of a mild flare can just be a bit of blood as you describe. That being said, I have not heard of pink eye, a rash, upper back pain and blood in the urine as beig symptoms of UC - that seems to be a different problem that you should investigate. As for a fever, when I am really flared I will run a low grade fever - but my symptoms would be severe by the time I get a fever - alot of D, blood, urgency and pain unlike your daughter. Hope you figure it out.

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 4/12/2009 5:46 PM (GMT -6)   

I had UC for 10 years before I ever experienced diarrhea as a symptom.  So the fact that your daughter has not had diarrhea is not a reason to discount her diagnosis.   I also did very well in those 10 years by just staying on a maintenance medication for UC.  The rash and the pink eye are probably not related to the UC and the weight loss could be due to a number of things. 


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 4/12/2009 7:59 PM (GMT -6)   
Weight loss, fatigue and low grade fever could certainly be caused by UC. Rashes are not uncommon, but it sounds like there are other things going on with the blood in the urine. I'd highly recommend your daughter see a complementary or alternative medicine physician if you can find one in your area or within a reasonable drive. When traditional allopathic medicine fails - multiple tests say nothing is wrong, but her symptoms say something obviously is - alternative medicine can be a great help. Rather than test and prescribe meds for various symptoms and each doctor looks at her in isolation - GI doc, urologist, etc., the alternative doctor will look at the whole picture and can check her thyroid and hormone levels, help build up her immune system, improve her diet and general health. (College kids being notorious for eating bad, stressing out and not getting proper rest.) My guess is you'll find some answers and the sooner the better. The college years were when my health really started declining... an early intervention will make whatever may be wrong easier to treat than if you wait until she's seriously ill and unable to keep up with daily demands.
Diagnosed with ulcerative colitis spring 1999.
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.

Veteran Member

Date Joined Jul 2006
Total Posts : 2105
   Posted 4/13/2009 9:29 AM (GMT -6)   
I would be concerned about the pain in upper back, fever and blood in urine.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed

Veteran Member

Date Joined Aug 2008
Total Posts : 5975
   Posted 4/13/2009 10:09 AM (GMT -6)   
     I'm in agreement with Judy and Dr A.  I have had UC for over ten years.  I've had three colonoscopies performed while in remission.  These colonoscopies showed NO inflamation at all in the colon.  However, when I had them performed during a difference.  Basically, my UC is confined to my rectum, so really it is referred to as ulcerative proctitis.  At the moment I am in remission and have been since Nov 1st of 2008 and blessing every day.
     I would be concerned about the blood in the urine, extreme fatigue and pain in upper back too.  See if she can be seen by a good MD, perhaps an Endocrinologist.  Good luck and keep us posted.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/ see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

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