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My 1 Year Old Daughter Has Ulcerative Colitis

Hi everyone, I’m a mom of a 1 year old baby girl.  She was born with a Jejunal Atresia and doctors had to take out such a significant amount that she has now has Short Gut Syndrome.  She’s been on TPN since birth and doing well not until recently when i started to see blood and mucus in her stool again….so we had to have a procedure done (endoscopy)…..and voila!…. on top of everything else, the doctor diagnosed her with ulcerative colitis.  Apparently she had it before and  that’s why they had to give her steroids, but he is even surprised to see this, to have two things,unrelated, going on in one patient.  How much more a baby.
Her first year of life has been very tough for both of us.  It’s hard for a mother to see her baby toss and turn, moaning in the middle of the night because of pain.  I know she’s in pain and I don’t know what to do.  She been the same weight for more than two months now, even with tpn and her g-tube feeding because of her diarrhea.

Question: Anyone going thru the same or similar issues?……hope i can get an idea or inpiration from you…

Submitted by “Mommy B”