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pyr_oba
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/6/2009 7:53 PM (GMT -6)   
Hello,
 
My daughter aged 2 1/2 just received a diagnosis of UC and I am not really convinced that this was right.
 
We first noticed blood in her stool almost a year ago, we did not seek medical attention right away as we did not notice it again for some time. A few months later we noticed it again and went to our family Dr who referred us to a GI specialist. The blood started to get worst in the past 6 months, and was occuring daily. My daughter has always had loose stool so we never really thought much of it, she would go to the bathroom 3 times a day never with any sense of urgency. We had no problem toilet training her and she has taken to it without any problems, she has never had any pain, cramping or other symptoms that I have read are typical with UC. The Dr performed a colonoscopy and the results showed mild inflammation in her colon no signs of any inflamation in her rectum. We had a Meckyls scan and that came back clear, we had a Barium xray and again everything was good. Her blood tests show low hemaglobin and markers for inflamation. We have been by the Dr that it does not look like a Milk Protien Allergy.
 
So my wife an I decided to go down the Milk free path and put her on Soy anyway just as a test because I had felt that something else was going on. Within a week of going milk free, which was really hard because as a picky eater she loved her yogurt, cheese and milk, she was suddenly having formed stool and the blood has gone down to trace visible amounts ( really if I was not looking I don't think I would be able to see it ). The other amazing thing was that she went from 3 stools a day to 1. The last visit we had with our GI Dr we went armed with pictures of before and after removal of milk, the Dr basically did not look at them and said oh yes there is still blood, not sure if she had super amazing eye sight but on the 2.5" LCD display of our camera there is no way that you could have seen the trace amounts without zooming in.
 
My issue I feel the Dr has made a decision that puts my child on drugs for the rest of her life without really being sure this is what is truly the cause. There seems to be nothing that the Dr has tested that proves beyond a shadow of a doubt that she has UC.
 
Has anyone ever had a UC diagnosis that was incorrect? I also read that you could have a Milk Intolerance that would basically present the same as a Milk Allergy just without the typical markers of the allergy, has anyone ever had been told they have a Milk Intolerance?
 
Just a quick additional point we started her on 5ASA Pentasa on Friday, we then noticed a slight rash, on Sat when we went to give her the next dose she had a bad rash across her shoulders. We took her to a Pharmacy where they were surprised at a diagnosis of UC at such a young age, they figured the rash was not related to the 5ASA. We talked to GI nurse and she said the Dr also did not feel the 5ASA caused the rash, although no one really told us what it could have been. We have not bothered to put her back on the 5ASA until they can explain what happened as the only thing that changed was the introduction of the drug. Today Mon she had a stool that was formed at first followed by lighter coloured loose stool with more visible blood. The other thing is that we slipped up yesterday and she had a small cooking that had a thin choclate coating which did contain milk, not sure though if such a small amount of milk could have caused her to have loose stool with more blooed?
 
Thank you for you opinions, information and help

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/6/2009 8:14 PM (GMT -6)   
Given that her scope showed no inflammation in the rectum, I have a hard time believing she has UC, as the inflammation always starts in the rectum, and proceeds continuously through the colon. Some people with UC just have inflammation in the colon (proctitis), some have it just up through the left side (left sided colitis) and some have it through the entire colon (pancolitis).

If I were you, I'd find a pediatric GI and get a second opinion.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 4/6/2009 8:23 PM (GMT -6)   
I can't comment on the GI specialist's findings, but no matter what, you should get a second opinion.

The medicines for UC are strong, especially for a little child, so you want to make sure you're on the right track. I have always gotten second (and even third) opinions, especially when I was recommended to get on even stronger medicines, such as Azathioprine.

I hope your daughter's fine soon.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine, 4800 mg Asacol
VSL#3 x 3 times a day, Metamucil wafers
Vitamin E enema or Mesacol/Asacol enema at least once a week
Spinach & sunflower seed diet


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/6/2009 8:25 PM (GMT -6)   

I am so sorry you are having to deal with this with a young child.  I know it can be a time consuming and frustrating path to definitively diagnose Inflammatory bowel disease (UC or Crohn's).  In my own case I think I had  symptoms in my mid-twenties that came and went with little severity but then was diagnosed in my early thirties.  What makes it hard is there is no one test that specifically says you have UC.  It's more like solving a jigsaw puzzle with sometimes scant information.  When doctors have ruled out a number of other suspect conditions they usually treat the patient "as if" they have IBD.  That includes using medication in order to prevent the symptoms from escalating.

If you are not convinced of your daughter's diagnosis maybe it's time to schedule a second opinion with a pediatric GI in a large metropolitan area.  I'm not sure where you live but there are several great places to go for more information.  The Cleveland Clinic in Ohio and the Mayo are tops.  But there exist many other places on the east and west coasts.

Sue 

 


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


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 4/6/2009 8:49 PM (GMT -6)   
I would get a second opinion. Like fruitgirl said, the rectum is pretty much always affected with UC. Although if it were a milk allergy, don't you think it would have shown up awhile ago? My boyfriend has a casein allergy (milk protien) and I'm pretty sure it manifested pretty much as soon as he was born.

But yeah. See another GI.
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/6/2009 9:30 PM (GMT -6)   
Hmm, no inflammation in the rectum? That's where it usually starts for UC, although patches of inflammation could indicate Crohn's-colitis (I think). Quite a few people with IBD have lactose intolerance, so definitely get a second opinion on this. I've read that the best pediatric GI hospitals are in Boston, Philadelphia, and Cincinnati; and then Mayo and Cleveland Clinics are best-ranked overall.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


Godheals2
New Member


Date Joined Dec 2005
Total Posts : 4
   Posted 4/6/2009 10:28 PM (GMT -6)   
Definitely get a second opinion, this is a very difficult disease to diagnose.
 Colazol, lomotil, alprazalam- been in complete remission for two years


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 4/7/2009 1:10 AM (GMT -6)   
HI...I feel sad to hear your daughter of such a young age is going through so much.

Did the doctor do stool samples and other blood tests for inflammation?

Definitely get a second opinion. and a third, etc. Do lots of research.

If your daughter has gotten a rash from the 5ASA meds...maybe not a good idea to keep her on them...such a reaction is obvious they don't agree.
But in saying that...maybe she was started on a higher dosage than her body can tolerate.

I sure hope you get a definitive diagnosis for her.

She can be tested for milk allergy, and if that's the case, it's best for her not to be having milk products. There are soy cheeses, etc and rice milk..etc that might be an option.
It's possible that the allergy increases her bms, and that would also cause some of her bleeding if the colon is raw.

quincy
*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/7/2009 6:17 AM (GMT -6)   
I would stop the Pentasa immediately. Get a second opinion like everyone else has said but if cutting out milk from her diet has helped her so much, I would just stick with that for now and see if things continue to improve. Before I got UC, I thought that doctors were like Gods. I have a completely different opinion of them now. You have to be your own advocate, demand answers and go with your gut on what you think it best for your daughter. No one can force you to give her the meds. I'm on my fifth GI since being diagnosed six years ago. I even drove as far as Cleveland to see one of the best doctors.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
Lialda, 6MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16289
   Posted 4/7/2009 6:43 AM (GMT -6)   
I would get a second opinion too. I have heard of a lot of people who have been misdiagnosed, she could be one of them. Maybe it is bacterial or an allergy?  
 
Did the doctor do a fecal occult blood test? It's a strip that detects blood from your bum.
I could see the GI saying she has blood if they used a strip but from a picture? I don't think so.
 
If I had a little girl with UC, I would definitely look for a female doctor. Maybe I am weird but I am uncomfortable seeing male doctors. I know it is clinical but it's awkward. If you tell us where you live, maybe someone here can recommend a GI.
 
I have seen parents recommend this site:
 
I hope you find some answers soon.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


pyr_oba
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/7/2009 6:01 PM (GMT -6)   
Hi

Thank you all for your comments

We are from Canada and are going to CHEO which is the Childrens Hospital of Eastern Ontario. Our other option would be Sick Kids in Toronto which is 5 hours away. If anyone knows some good GI Dr's at either hospital I would appreciate the information.

One question on getting a second opinion, I figure there is probably 2-4 GI Dr's at our hospital so if we get a second opinion are the Dr's not already sort of slanted in favour of their coworker?

Pentasa was stopped on Sat after we noticed the rash, no word back from our Dr on what/if we should do anything further.

I read an article from the American Journal of Gastroenterology, link is below, and it was all about kids with allergies that basically suffered from the same type of symptoms as my daughter. Although they mention in the article that the symptoms went away in a few days without milk, so now I am wondering if there is another allergy involved because she will often have skin reactions after eating certain foods. We have never been able to place the cause, ie Frutopia cause blistering on her face, the other day she had a reaction on her chin while eating some thousand islands salad dressing and then yesterday she was making home made playdoh and got some next to her eye which caused a reaction.

http://www.nature.com/ajg/journal/v103/n10/abs/ajg2008518a.html

Actually the odd thing that we have called the Dr out on is the fact that no one has ever given her a stool test, we tried some ointment for what they thought might be a fissure then when that did not work is was into a colonoscopy.

We have tried her on Lactose free, however, that really did not sem to make a difference and if anything seemed like things were worse

The GI Dr did say that she does not believe that it is Crohn's for various reasons from the result of the test.

From the colonoscopy we were told that it was on the left side and that the inflammation was "patchy" not continous throughout the colon.

Thank you again

pyr_oba
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/7/2009 6:07 PM (GMT -6)   
Hi

One other thing, I have seen that some companies run genetic testing that they say can tell you if you if you have an increased chance of having UC or Crohns. Has anyone ever tried this and do the results seem accurate or is it a bit random?

Thanks

glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/7/2009 6:39 PM (GMT -6)   
I've always heard that when you get a second opinion, it should be with a doctor from a different practice. They could be affiliated with the same hospital, as long as they are with a different practice.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
Lialda, 6MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano

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