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My Beautiful Son

My Son Has Ulcerative Colitis:

I am the mother of a four year old boy from the UK who was has had ulcerative colitis since he was two years old. He was diagnosed at 3 years 5 months after a colonoscopy. The pediatric consultant had ruled out colitis as they thought it couldn’t possibly be this as he was so young. Before he had this condition he was so lively and happy. (he still is when the medication actually works)

Symptoms:

At the moment he is having what i would call a mini flare up. Blood and runny poo up to 3 times a day. He was in remission for 4 months prior to this.

My Son’s Ulcerative Colitis:

He has just started school in January so has to have one dose of his medication at school. The other day was Shrove Tuesday he could not join in as has an intolerance to lactose.
I had to pick him up from school early on Friday as he had an accident at lunchtime. He could not get to the toilet in time. The teachers really know nothing about UC. ( i mentioned to the teachers and school nurse that i am worried about him been singled out by the other children when they realize he has a poo related illness they have said that a lot of the children are having accidents all the time and a child with diabetes gets a lot of sympathy from his class friends!)
I printed out an information sheet for them to read that i found on the internet and i really hope that they did actually find the time to read it.
There are so many foods and fruits that i want him to try but he is on a low fiber and low residue diet. His appetite is terrible he likes to eat little and often when he is feeling o k. Somedays he does not want to eat anything. Apart from his ensure milkshake drink which he loves.
He missed 4 months of nursery school last year as chickenpox was going around the nursery. It took that long for the doctors to give permission for him to have the vaccine. He is behind with his schoolwork and development. I am worried for him everyday i really just keep asking myself why him? And if him, why so young? I have 4 older children they are all fine. I do not actually know any one else with UC and have basically learned everything from reading information on the internet as even the GP was not very helpful and appeared not very well informed.

Colitis Medications:

He takes sulfazalazine 500mg 3 times a day. Iron and Folic acid. He has taken pred for 3 months when initially diagnosed and the pred enema for 6 weeks in the summer which he absolutely hated and i hated giving it to him every evening i thing it caused him to have a massive flareup where he was on the toilet every hour morning and night. I told his consultant i never want to have to give him that medication again ever. They have prescribed azathioprine 25mg once a day but after reading the information regarding this medication i am to scared to give it to him also he can not swallow a tablet. The GP says this medication is not available in liquid form.

written by Marie

submitted in the Colitis Venting Area





23 Responses to “My Beautiful Son”

  1. mikeMarch 1, 2012 at 10:38 am #

    I also have a son who was diagnosed with uc when he was 4 years old he is now 5. I also worry bout him at school esp when he starts bigger school i dont want him to be an easy target. if you have a twitter account maybe we could follow each other and if there is anything you want to talk about as we both have a young son with the same condition.

    • MarieMarch 1, 2012 at 12:45 pm #

      Thank you for your reply Mike. It would be great to talk to someone in a similar position, I do not have a twitter acc at the moment. I will set one up.

      • mikeMarch 2, 2012 at 11:48 am #

        Ok would be nice to talk to someone that is in a similar situation. i thought my son was the only one to have it at such a young age as people i heard that have it are either in their teens or adulthood. If you do set up a twitter acc my twitter name is @mikepr08 :)

  2. BevMarch 1, 2012 at 4:40 pm #

    Hi Marie,
    I am so so sorry. I have never heard of children so young being diagnosed with this painful, irritating disease. It is SO UNFAIR!! Like, when children get cancer…and we all just wonder why…

    May I ask, did your son ever take antibiotics? I am convinced that the use of them, especially in children, is just not good. Also, has he had any major illnesses, like a bad flu, or mumps, or anything like that?

    I just cannot understand why one so young would be sticken. There has to be some sort of answer. Doctors all say that they do not know why some people get colitis, or MS, or lupus, or what have you. In the 21st century…why are there no clear answers?

    Again, I am sorry. Sorry for your beautiful son, and sorry for his wondeful mother, who has more work than she should. It’s difficult enough raising children, but to have this to deal with, and thibk about 24 hours a day as well…

    I have a son who is almost 30 years old now, and although I have suffered with ulcerative colitis for some 15 years, he does not have it. Thank goodness. I don’t know where I would be right now, if it would have been him with the disease, instead of me. I admire you so much. As parents, I know that we do what we have to do, but we hate to see our child suffer at all…

    Bev:)

    • MarieMarch 2, 2012 at 3:45 am #

      Thank you Bev. I think you may be right about the antibiotics as in the last 8 months he has been prescribed them twice and each time after finishing the course he has had a flare up; he was prescribed antibiotics about 4 weeks ago and is currently having a flare up.

      • BevMarch 2, 2012 at 11:01 am #

        Hi again, Marie…Isn’t that something? Antibiotics. I just knew it. We often hear how we shouldn’t take antibiotics unless absolutely necessary, because they will lose their effectiveness, but we are NEVER warned or told about the dangers of having the good ‘probiotic’ bacteria taken out of our bodies by them! This really pisses me off!

        I believe that some of us are very sensitive to ‘drugs’ and your little boy is probably one of us. I can take one tylenol, and it is super effective, while my husband can take two, and they do nothing for him. I am obviously the sensitive one (I always have been), in the two of us. Of course, I have alot of friends that are just like my husband. They can handle medical drugs like nobody’s business. Whatever they take, I hear from them either ‘they aren’t working’, or ‘I don’t feel anything or any side effects’. I wish!! Every medical drug I have ever taken affects me much more than the doctor tells me they will. Some side effects that I get aren;t even supposed to be a side effect of the drug I am having them from!

        Anyway, we can’t know how a child will react to meds, until it is often too late. What a quandary…we have to treat some things medically, and when we do, we may end up irreversibly damaged.

        I wish I had an answer. Apparently, we UC sufferers are ‘stuck’ with this for LIFE. FOR LIFE!! I’m not buying that. I sincerely think there is a way to get back. UC is basically ulcers in the colon. A stomach ulcer is an ulcer in the stomach. People with stomach types of ulcers are treated with alot less dangerous meds than we are, and sometimes cured. There has to be something less dangerous and more natural for UC, as well as a cure. I am currently looking into fecal bacteriotherapy…bascially putting the good bacteria back into the colon, like a massive dose of probiotics shot right in the colon. Have a look into that. It is all natural, and I believe it can be done whilt under anasthesia. I’m not sure about the procedure for children, but why not? It’s all natural…except the anasthesia, of course. It is a fecal enema, but not one of those nasty drug filled enemas that you have had to administer to your son.

        Please keep us posted. We care about you and your son! Maybe, he will help us all to find this cure, that I KNOW is out there….and thank you for sharing your very poignant story. I’m sure there are many other parents out there in the same situation.

        Cheers
        Bev:)

  3. TobyMarch 1, 2012 at 6:52 pm #

    Fruits and vegetables are key. Ensure kills me and has dairy protein in it. Push fruits and vegetables in 85% total daily… after a week when the guts get used to them things get much better. Cut back on the sugars, dairy and meat … goes a long way.. super low finer for any period of time weakened the bowels more.

  4. MerlinMarch 1, 2012 at 8:24 pm #

    Hi Marie
    Sorry to here about your son at such a young age is so sad. I was 54 before I was diagnosed with UC. There is a book called Breaking The Viscious Cycle. It’s about a doctor who’s son was 6years old when he came down with UC. He developed a diet for him I am now on this diet but for only 2 weeks now so I can’t say it works but I believe it is going to help me. So maybe you might you want to check it out it certainly can’t hurt also it might give you an idea what your up against. Good luck to you and yours.

  5. KarenMarch 2, 2012 at 6:44 am #

    You need to look up a web site called pecan bread it is for children who have UC and the diet that they can follow it appears lots of people have had success with this diet. I wish you and your son lots of luck. It is horrible to watch our children hurt and not be able to help. Diet is the key to this disease and if you start now perhaps you can put it in remission forever! Check out pecanbread it is part of the SCD diet for children.

  6. BevMarch 2, 2012 at 11:02 am #

    Anethesia…sorry everybody…I know my misspell is annoying!!

  7. DebbieMarch 2, 2012 at 2:22 pm #

    Hi All, Marie I hope your son feels better sooner rather then later. I have had UC since I was 24yrs old and am now 48yrs. If there is one thing I have learned and trust me when I say I have been to H-ll and back, is that we really are what we eat. I have been in remission for almost 12yrs and presently have had issues with chronic heartburn. I started the SCD about a week or so ago and guess what… no heart burn. I do have an appt with my GI for scheduling an endodoscopy (last one when when my dad passed) and my annual colonoscopy. My dad passed 12yrs ago from stomach cancer, hence the flare up at that time. UC runs in my family on my mom’s side (not dad’s); my younger brother has Crohns. Needless to say, this is a big part of my life. I have heard that it is unusual for Crohns and Colitis to run in the same family.. wondering if anyone has any thoughts on that.

    Anyway, the point I want to make is that I agree with many of the above statements re: diet. I am glad to hear that there is a pediatric website for your reference. As I have said in a previous post, misery does not like company, but company offers support.

    Best of luck to you and your little man!

    Debbie :)

    • George in NapaMarch 2, 2012 at 7:59 pm #

      Debbie… I have UC and my younger brother has Crohns. He has had Crohns since his late 20’s or early 30’s.
      I was diagnosed with UC at age 65. IBD runs in my family.

  8. scMarch 2, 2012 at 5:03 pm #

    Hi Marie,
    My daughter was dx at 3.5 and has just turned 6. I understand your worry and the hell that is trying to get to the bottom of this with a child. I wish I had some wise words to offer you – we have tried the scd twice, low carb/paleo, gluten/sugar/dairy/fruit free, we’ve taken her to chinese medicine docs around the world, tried ayurveda from India, every neutraceutical/supplement known to treat IBD, TSO worms, fecal transplants at home, antibiotics, meds gallore, four GIs, etc etc. This disease is a monster and we have sold our house to pay for this stuff and been to hell with it. I truly empathize for your family. We are facing surgery and at this point I am almost relieved though of course very very scared.
    I hope you find a way to keep him in remission. You should look at dragonpack.org – a website for parents of children with IBD.
    Best to you.
    Sherry

  9. scMarch 2, 2012 at 5:05 pm #

    Also Debbie,
    It’s not uncommon for UC and CD to appear in the same family. The link is the susceptibility to IBD as far as I can understand it.Good luck.

  10. claudia andersonMarch 3, 2012 at 2:57 pm #

    Hi Marie~
    The website you need to visit is called pecanbread.com – it has lots of great information on the SCDiet for parents of children with UC. The diet is difficult at first but he will begin to really benefit from it quickly, & maybe he will understand that it’s better to have a good-feeling tummy than eat stuff that makes him sick. You have to be really conscientious about it though– no convenience foods, grains of any type, dairy, or sugars (except raw honey), or anything processed. You will learn how to do everything from scratch & discover it’s actually quite empowering! Also, you & other members of your family will benefit right along with your son–it’s a very healthy diet. It’s eating to live….not living to eat! Good luck, dear <3

  11. MarieMarch 4, 2012 at 10:42 am #

    Thankyou all for your advice and concern. I will take all this new information and use it wisely.

  12. SallyMarch 9, 2012 at 8:44 pm #

    Yes, Marie, start SCD now so that he will get used to the diet and as he grows it will be natural to him and the allowed foods will even become comfort foods. It is really quite a healthy diet. I am having trouble with the diet with my teen who was recently diagnosed. She unfortunately has a lifetime of bad food habits that she desperately doesn’t want to give up. I know your guy is little and it is hard to see him suffer, but as far as getting some healthy food habits going early, his young age might be an advantage. And yes, read Elaine Gottschall’s book. Her daughter was 4 when diagnosed with UC.

  13. donnaMarch 14, 2012 at 11:53 am #

    My son was diagnosed with uc at 6 years old. He was very sick and was in hospital for 10 days. One of the drugs he was given was sulfalazine or sulfasoluside I thought. Can’t quite remember exact name. It was a yellow-orange chalky pill he could not swallow them so they had him chew them in goldfish crackers. He is now 14 and his teeth are still discolored from that drug. Once they took him off of it and put him on 6mp he had improvement. He got very sick last year and they reduced his 6mp from on pill a day to half a pill a day and he was well for a year. I wish they had done that earlier. Unfortunately right now he is having his worst flare ever and has beenn out of school for 3 weeks. It did start after taking augmenton for a chest sinus and ear infection that followed a virus. The school has threatened us over and over that I will be put in jail and him in juvenile hall if he does not stop pulling this. I am a single mom and they are treating us both badly. He is sick and I take care of him. That is all. It makes me sick to think the school doesn’t care enough about his health that they have to go on the attack when he gets ill. Last year they denied him 504 plan because his grades were too good. Then again when his grades fell. Then they said he had been in it all along even though I have written proof of denials Talk about kicking someone when they are down. Last year they had a police officer talk to him and I telling us he can’t wait to show us that we can’t get away with this kind of behavior. They sennd multiple letters saying he has missed school for NO JUST CAUSE even though every absence is excused by doctor?? What behavior should he stop? Being sick. Having a disease? Taking care of your child is bad behavior? On the other hand if I neglected his health I would be thrown in jail for that too. What do they expect us to do? I don’t let it bother me anymore because his health is my only concern. His tears his pain his future. I want him in school more than anyone but I also want him healthy and alive and not to be put down and harrassed by adults for simply being sick. This world has its priorities all mixed up to punish a child who is sick yet do nothing to the families who take their kids to disney every winter during school for two weeks. I know of several families on that plan. But no single moms! I will pray for your child too it seems he has a good mom on his side that will stand up for him and make sure he thrives and has a great future!

    • MarieMarch 17, 2012 at 1:31 pm #

      Hi Donna
      It is horrible when no one seems to be on your side I think that it sounds like you are doing the right thing and you know that. When my son is going to the toilet every other hour he does not want to read and write he just. Wants to rest and I am sure your son is the same. I got my doctor to write a letter to the school. But to be perfectly honest I don’t care what they think it is so frustrating if you keep thinking and thinking.
      Good luck to you and your son I am thinking of you. Thankyou for your reply.

  14. CatherineMarch 17, 2012 at 5:33 pm #

    Hi Marie,
    So sorry about your son. My daughter developed UC in High School. She just took the spring semester off from her sophamore year of college to have a colectomy and Jpouch surgery. So far she’s had the colectomy. Jpouch surgery will be in May. She feels great, thank God! It’s SO hard to see your child suffer. In America there is a Disability Act with 504 Plan. It allows for accomodations to be made at school for physical, or mental disabilities. For my daughter, she was allowed to leave a classroom without permission to use the bathroom. Also, no limit to how many times she could leave a classroom. If your school has a Social Worker, or equivalent, maybe a plan for your son could be set up. Good Luck.
    Catherine

  15. Amy DunsdonAugust 10, 2012 at 4:46 pm #

    My daughter was also diagnosed with uc when she was two so I can imagine how your feeling. It took the doctors over a year to find out what was wrong with her and in that time she had ten blood transfusions and she was passing blood in her poo up to fifteen times a day! She was put on sulphasalazine omeprazole prednisolone and azathioprine all at very high doses. She was so sick that I thought I would lose her. In dec 2011 the doctors decided that all this medication had failed to work so the only option was for her to have surgery. Her colon was removed and she now has an ileostomy. It is a very difficult thing for a four year old to come to terms with and she needs help with a lot now but she is thankfully on the mend. I too constantly worry about school because she recently started nursery but they don’t seem to know a thing. A few times I have had to collect her from nursery because she has had problems that they cant deal with. Also I worry what other children may say to her about her condition because she is still too young to understand why she had this and not her friends but she is strong and has surprised me in every way. We worry about our children when we really underestimate their abilities to deal with the problems they have in life!!!!!! We just have to make sure that everyone in our children’s lives are aware of uc and how it affects our children in order for them to live as normal life as possible.

  16. RanaAugust 31, 2012 at 8:18 am #

    Hi my daughter was only 18 months old when she had her first flare up. She is 2 years and a half now :) the most beautiful princess.. They performed 2 colonoscopies and endoscopies and still not sure if it’s ulcerative colitis or CD .. She is on sulfazalazine on and off.. She often puts her finger on her tummy and say hot hot :( I wish I can just give her my colon.. She eats healthy I tried many many things.. She’s allergic to eggs and chicken!! Am terrified about the future and what may happen. We went to drs in washio university And mayo clinic but both didn’t give us a clear diagnosis and they want to do a third colonoscopy and endoscopy which I don’t want her to have now.. Steve been through a lot!!! Am going to try the diet for a while .. Is it normal to leave them bleed like that?? And nothing can stop it but medication!! She wants to learn to potty but she is disappointed cuz she just can’t hold the diarrhea so I’m not pushing it at all.. It just breaks our heart me and her dad we just cry at night when we talk at her and how cute she is and why her.. But we will never make her feel different she will always feel normal no matter what but what we can’t control is outside the house and when she starts school… Terrifies me.. I feel for u Marie and am sorry we have to go thru this but children are strong we have to make sure we don’t show our weakness to them and be strong for them as well … Please let me know what do u do with the accidents in school and don’t start the medication immediately when the flare up starts?? Thanks a lot good luck to all of u..

  17. A.G. from CanadaOctober 15, 2012 at 8:41 pm #

    Hi Marie,

    My son also got diagnosed with colitis at 3 years old and 5 months…(after having an upper endoscopy and of course a colonoscopy.)
    I remember how he bled for a whole month before that, every time he went #2… To make matters worse, my little angel would always apologize to me for the blood…like it was his fault… :( It made me feel so sad and helpless as a parent… I would often cry.
    He’s now almost 7 and hasn’t had an episode in almost 3 and a half years… He’s in primary school , is very active- plays hockey and is the star player of his soccer team…but he often gets stomach aches and I always worry if this time will be the time he gets sick again. Just wanted to let you know that you/he are not alone and that things can eventually improve for him. How is he doing now?

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