HELP!! Dont know what to do

Hi,

My son who is going to be twelve has been dealing with an issue going on three months now. He first complained of lots of mucus in his stool. Then a month later he started noticing blood. Not a lot but enough to be concerned. Along with this he went to the bathroom at least 5 times a day. Sometimes just mucus. It occured alot after he ate something. He was refered to a specialist. They did blood work and a colonoscopy with a biopsy of some tissue. Blood work came back fine. Doctor said that his rectum had ulcers and did not look normal. She suspected ulcer proctittis. His biopsy results came back normal. The doctor that referred him for a colonoscopy called and said that he recommends miralax to soften stools and believed my sons issue is constipation. I was furious to hear this because he is far from constipated. He has also developed a canker sore in his mouth. Now I am no doctor but I know my son is not constipated. So why is it that his blood work and biopsy came back fine but he has ulcers in his rectum area along with mucus and blood. I do have a strong family history of chrons desease. Any one experience this? We have another appointment with the doctor and I don't know what to say except that I do not agree with his diagnosis.

Kab, I'm sorry about your son. I hope it's not UC but my daughter was diagnosed last year after being brushed of by her very highly regarded pediatrician. She was rude and condescending. We finally went past her to the emerg. I've since had numerous opinions by GIs on her file. She does have UC so I'll do what I have to to get her the best care possible. Unfortunately, most docs are pretty arrogant. You are his parent and must be his advocate. Get a second and third opinion if you need to. Good luck.

Ulcers in the rectum along with the other symptoms (and your family history) makes me think something more serious than constipation is going in here. It does not sound like he is constipated at all - quite the oposite. It would make me furious if my child's doctor was not listening to me about that! I am sorry you are having to deal with this doctor. It sounds like the doctor that did the colonoscopy suspected UP - I would try to call her instead of talking to the referring doctor.

I agree with killcolitis, you may have to take him to the ER or to another doctor. The longer he goes untreated the more he will suffer and the worse the disease could get. I wonder if his biospy came back negative b/c they did not test the area with the ulcers...just a thought. I can tell you that most of my general blood work always comes back ok - even when I am in a bad flare so bloodwork alone is not a key indicator of disease. Did they do a fecal test to check the blood in his stool? Any blood in stool is a concern - especially in a child. As a parent myself, I would get a second opinion and keep pushing until this is figured out. Best of luck to you!!!

Hi, and welcome to the forum!
Are you in an area in which you can find another GI, hopefully a pediatric GI?
If you disagree with the diagnosis and this doc isn't open to hearing your concerns about that, I would think you'd need to find someone you're more comfortable with. I have learned so much from my son's pedi GI office - there are some different issues with kids and they respond somewhat differently to treatments.
Gosh, given you family history, the frequency, mucus and blood, the activation of the gastro-colic reflex so he goes right after eating, AND the canker sores in his mouth (more common with Chron's, I believe, but I had them in my initial UC flare - it was my dentist that referred me for GI testing) - I'd question the diagnosis, too.
Let us know how things go for you (and your son.)

I think you might have misunderstood... The blood work and biopsies are mostly to test for cancer and infection (bacterial and viral). Sometimes the biopsies can help differentiate between Crohn's and UC. From what your wrote it sounds to me like the doctor is giving you a preliminary diagnosis of ulcerative proctitis which just means UC limited to the rectum. As for the constipation thing, are you sure? What's the actual poop like when it comes out? Is it hard? Pellety? If the doctor scheduled a follow up I don't think he/she is brushing you off. That might be when he/she intends to discuss medication options.

There is no test that rules either Crohn's or UC in our out. Diagnosing the Inflammatory Bowel diseases is much like putting a jigsaw puzzle together; lots of varying tests and most importantly candid conversations with the GI about symptoms. I think you need to be in partnership with a good GI, one you can trust and one who is easily available should the diagnosis be IBD. Also it's important for you to know that for some of us getting a diagnosis took 6 months to a year. It's not as cut and dry as it appears. Be proactive and persistent with your doctor but also understand that IBD is a tricky and unpredictable disease.

Sue

 

  Sue,

  Thanks for your input. I guess I want answers now becuase I cant stand to see my son suffer. Like you said the first place to start is to find a good GI.

I plan on bringing him to his primary care doctor for some options. I will have to mention the medications you recommended.