My daughter was born 3 weeks early but had no complications to speak of. She was almost exclusively breast fed with some minor intro to formula but around 4 or 5months of age, we notices some strands of blood in her poopy diaper. Upon seeing the Pediatrician, we were advised that it was probably a milk allergy. At that point, I stopped all milk and dairy in my diet and breastfed her exclusively till 20 months.
She never showed blood in her poop again….ie. never again till around age 2.5 yrs. Every time we would see some blood in her poop, we would go off to see the Dr. who would either find a small anal cut or some sensitive skin rash that would explain the blood. The blood was always like a bright red, small strand which was noticed only because of hypervigilant parents. This probably happened once in 2 months or so.
Fast forward to age 3.5 yrs, when one morning she had a really bloody stool. Off we went taking a picture of the ‘mess’ who sent us to a Pediatric GI @ Stanford that same week. There was no cramping, abdominal pain or any other issues. I must add that she has always had somewhat loose or broken up stool but she only had a BM once/day, max 2. The GI suspected a benign polyp and my daughter underwent a colonoscopy in Jan 2010 which again showed nothing major except for some minor inflammation. But the stool tests showed no infection, her blood work showed anemia and some other readings and her biopsy came back showing chronic inflammation all over the colon.
The recommended strategy was Sulphasalazine starting off with a mild dose since her symptoms were mild. However the GI agreed to wait it out for 6 months to see what happened since we were in shock and confusion having never really heard of ulcerative colitis or IBD. In those 6 months we maintained a log of her food and her stools blood indicators. We also started her on iron supplements, a regimen of VSL#3 and yogurt/kefir and also a cocktail of freshly squeezed pomegranate and turmeric root juices (which are supposed to be natural anti-inflammatories).
In June 2010, we reported to the GI that we saw blood at least 10 times each month in varying quantities from small specks to a fair amount of blood (about 1/4 tsp worth) in her stools. She continued to have one BM/day with no pain and the consistency was loose/broken up like always. However in May 2010 she had an episode of Erythema Nodosum and in July she had an episode of wrist joint inflammation. She continues to grow along her chart and her anemia was resolved. The GI recommendation was to start Sulphasalazine and that there was no dietary therapy for this.
We almost started the meds but then paused and thought about it and decided to give Homeopathy a shot. We are still waiting for that to work. Then we decided to see if there was a food intolerance triggering her flares and started an elimination diet but we have had mixed success there. We are still in the middle of it and think that there is something that is triggered by wheat and lentils. We hope to add yogurt this week to see what happens. However now we have our doubts about a food intolerance triggering the UC flare and are now considering the SCD diet.
My daughter continues to grow normally, is otherwise healthy (touch wood) and has no other UC symptoms outside of the erratic rectal bleeding which comes and goes. The most blood we have seen since the beginning of this saga last Oct. has been 1 tsp of blood on 3 occasions. She still has one loose/broken up BM per day with no other pains or complaints.
My questions are
1) Anyone else out there with this kind of a clinically quiet UC?
2) Any chances of a misdiagnosis?
3) Anybody else tried SCD for a 4yr old? What is the success rate without disrupting this child’s normal life?
4) Are meds necessary to calm down the colon before starting SCD?
I know this has been a rambling post and apologize. I know my child is lucky to have a mild version of UC so far but I just want the UC gone completely and my daughter well again. Try as I may I cannot understand why the Drs. dismiss all diet therapy options and am hoping to find something that works for my child without having to pump any drugs into her if it is not necessary.