The Unknown Disease Called Colitis

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, 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

8 thoughts on “The Unknown Disease Called Colitis”

  1. Dear Zara, I have had UC for 10 years now. 9 years of prednisone and Colazal. Always had symptoms. I tried Probiotic Renew Life 50 billion, tumeric, L-Glutamine, and the specific carbohydrate diet. I have been symptom free for six months now, since starting this regimen. I am strict on this diet with no illegal foods. Just the foods allowed on the SCD. Look for the book: Breaking the Vicious Cycle. Worked for me…..I hope and pray your son finds relief from his symptoms. Good luck and Blessings.

    1. I’ve had UC for 15 yrs (currently 48 yrs old) and tried many drugs and medicated enemas. I started the Specific Carbohydrate Diet Oct 15, 2014 and it took only 2 months before I was symptom free and feeling great! I make my own lactose free yogurt and bread made with almond flour and eat all veggies, fruit, nuts, most cheeses and seafood (I don’t eat meat) with no issues now. I even drink both white and red wine with no issues. It makes me mad that doctors never mention this diet to their UC patients! I stopped my drugs (Lialda) right when I started the diet because they stopped working for me, though I used a couple enemas for the first week or two. It’s tough at first to totally give up all grains and sugar, but after the amazing results it’s motivating to stick with it and be drug free!

  2. Dear Zara, as a mother my heart goes out to you as you try to find a good solution for your child.
    Please keep a daily food log so you know what helps and what hurts your child. Please keep searching for a good pediatric Gastro Doctor.

  3. Dear Zara, Only mother can know the suffering of her children. Your concern about your son is normal as UC patient has to face a lot of problems during normal course of daily life. I suggest you not to get panicked and try to make things normal by keeping yourself cool and calm. If you become impatient then your son and your whole family will get disturbed. Please keep in mind following points
    1. UC is a disease in which you have to control your diet through your experiece, because each individual has a different course of reflection with different food items. Make a note of food items which suits you and take them accordingly. Avoid food items which produce gas in the stomach i.e. some pulses, radish, brinjal etc.
    2. Please try to make environment tension free. Tension due to any reason can inflate the your condition and make it worse.
    3. Please enough sleep and rest. Do not get over exhausted due to any activity either it is personal or official work.
    4. Make a note medicine which suits you and take them through the advice of doctor.
    5. Take proper supplements like folic acid/ multi vitamin/ fish oil etc.
    6. Some simple home kitchen items are benificial such as turmeric, aniseed, black cuimin, cinamum, fennel etc.

    1. I’m grateful to you for your important advises. I needed to your words. I’ll pray for your well being. Even if you are far away, you are a close friend of mine. Take care :-)

  4. Dear Eileen and Jo , im grateful to you for your advice. You both are moms. Take care of yourselves, because mostly moms dont get time to take care of themselves. I needed your words, and my prayers are for you. :-) please pray for my child’s good health. Take care.

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