Hi, I am Zara.I’m 42 years old. My husband is a doctor. I have a son and a daughter. My first child, my daughter,currently 15, had digestion problem till five years age. Later, she became healthy like a normal person. At the time of my second child, currently 7+, I noticed the same problem. Both were non breast fed babies. But my son never recovered, instead his health was deteriorating day by day. I didn’t think this was very normal. When nobody could diagnose what was his problem, one pediatrician diagnosed him as an ibd patient ,it was hard to diagnose him with ibd coz ibd doesn’t almost exist in my country. Later, I went to Bangkok and became confirmed that ibd was actually his disease. At that time, my whole world broke down for me. Because I was completely in dark about this disease, there was nothing, but internet which could give me some advice, some information about this disease. I think for my son’s improvement, for his well being I need lot of information about this thing, that’s why I wanna get as much as information about this disease I can get.
Some more background:
I’m from Bangladesh but now I’m living in Kuwait.
My friend and family used to describe me as a witty person, an intelligent woman.
But since my son was diagnosed with ibd, I’ve completely changed. Now my thoughts, my actions, my emotions.. Everything in my life is surrounding my son ,his disease, his treatment.
That’s why to my friends, my family, my social circles, ..now I appear to be a stranger.
Symptoms of my Son’s Colitis:
Both the doctors of Kuwait and Bangkok said that my son has a really small amount of inflammation in the descending colon, close to the rectum and anus. Though the doctors didn’t specify as UC, they had said its mild non specific colitis, they are giving him the same treatment as an UC patient. Earlier, his symptoms were, stomach pain, vomiting, frequent bowel movements either constipation or either lose motion,occult blood in poo,from last six years. During 2014, I gave him sulfasalazine for six months. But never saw enough improvement, but I’d admit, that at that time he was a bit better..last year, his pediatric gastroenterologist of Kuwait gave him Asacol. Last one year, he was pretty much better. I don’t know how will he be in future. His current weight is 24-25 kilo almost always, but he is skinny and he looks pale. Apart from eggs, chicken, potato, rice, dairy free biscuits, banana, apple if I give him anything he can’t digest well, and he starts having problems again. Although the doctors told him to give all food. Another thing is that he still doesn’t have enough energy, capability,resistance power to go to school. His tiffin issues, toilet issues are there. He studies at home.
My Son’s UC:
Though my son is the person who’s suffering from uc, I am writing as the patient coz he’s my son, and his feelings are my feelings. The biggest thing is, that my son is just a young child which is why he can’t understand lot of things and can’t explain his problems either. He want to live as a normal child but he has lot pullbacks. This disease is like such a disease that a person has to live like an average person, but he’s not normal, he has uc. Currently, as much as pressure physically and mentally, I’m getting for his disease, his treatment , his diet.. I feel like he’s gonna feel and Live with the same things in future. I didn’t had breast milk, that’s why I had to give him powder milk. When he became 8 months old, from that time he started having the same symptoms mentioned above. Even apart from my husband, there was not probably a single pediatrician I didn’t went to. They gifted me tw o things that I’ll remember my whole life. They said I’m a mental patient mom, and that they give my son antibiotics. Even now if I recall those I get nightmares . They gave him antibiotics so many times and took him towards last stage or death or whatever. My child’s biggest pain is that he can’t eat like a normal baby, he can’t go to different places frequently, he can’t go to school like a normal baby. Because seven years he went through physical and mental illness, I’m giving him a break, a relaxing period from last year. I have to leave Kuwait after one year. I want a good diet, a clean environment, a good treatment, a chance to study in school ,and lot of advice for my child. I’m afraid to go back to my country where nobody knows nothing about ibd. I want answers from god that even if a cancer patient can live normally then why can’t a uc patient? This is my wish as a mother.
My child has non specific colitis, for this much disease what type of diet should I give him, what are the most modern treatment for this, how can I give him a normal social life? I want and need advice on these things.
His age is 7+. Weight 24 kg.
Last six years he was on antibiotics, from 2014 I gave him sulfasalazine for six months, for three times daily, 750 mg and sometimes nexium tablets and proctosedyl suppository for three days and one month proctosedyl ointment. There was not much improvement in his health, except that his ulcer in rectum healed.
From 2015,im giving him Asacol 800mg two times daily total 1600 mg a day. And for one month I gave him vitamin D, folic acid and zinc supplements.
We did his colonoscopy two times. Both time it showed mild colitis. In calprotectin tes,his results came that he had mild disease. Doctors here, said that Asacol should be continued and we saw lot of improvement in him
written by Zara
submitted in the colitis venting area