My Innocent 6 Year Old Girl

6 Years Old with Ulcerative Colitis in Western Australia

Hi I’m a mum of 4, my 6 year old daughter was diagnosed with UC 8 months ago and my husband and I are seeking hope that things will get better for our sweet girl.

We are from a coastal town, 3 hours from the city (where our gastro team is) in Western Australia. We love music and going to the beach. Our eldest boy is 12, daughter 10, daughter with UC is 6 has just started year 2 and our youngest girl is almost 1.

Ulcerative Colitis Current Symptoms:

My girl currently is experiencing abdominal pain, loose stools and frequency. Regular accidents in her pants are just a common thing for her and us. I would say it’s moderate as she is still able to attend school (with lots of spare knickers) Steroids are keeping the bleeding and UC at bay.

Her Story:

My 6 year old girl was diagnosed 8 months ago after ending up in hospital for a week. After months of tests and waiting for a specialist appointment though our public system I made a decision to see a private gastroenterologist. She had severe bleeding, loose stools and cramping every half hour, he suggested it could be Ulcerative Colitis. Before we could get the Colonoscopy following week she started vomiting and was so weak so we took her to emergency 2 hours away. She was in hospital for a week on antibiotics, fluids and had an iron transfusion. She had a colonoscopy and endoscopy and found out she had UC. It was pancolitis and they started prednisolone and mesalazine. After 3weeks She was back at school and she ended up in remission for 4weeks before symptoms returned. Back on prednisolone. The maximum mesalazine didn’t work. She has just started tacrolimus and no improvement yet but fingers and toes crossed.

We had to learn what UC is and come to the realisation that there is no cure and the doctors, medications and needles are now a regular part of our lives. Family are supportive but my husband is the only one who truly understands as we have both been through the roller coaster together with our innocent, undeserving and beautiful little girl. I’m most concerned about how medications are affecting the rest of her body especially because she is so young and still developing and will we find something that works!? We are considering moving to the city to be closer to the hospital as 6 hour round trips are getting exhausting for her and us. We don’t know anyone else with Ibd and feel isolated. We are open to any advice or support from anyone in a similar situation to us. Diet research (scd) is now our next step.

medications:

Steroids work but she’s becoming steroid dependant.
Mesalazine only worked for a few weeks.
Currently trying tacrolimus with hesitation.

written by “Flick G”

submitted in the colitis venting area






38 thoughts on “My Innocent 6 Year Old Girl”

  1. This is heart breaking. I feel for your whole family. Please try everything you can as steroids are the devil in sheep’s clothing. Best of luck to your beautiful girl.

  2. Hi Flick G. I was also diagnosed in 2010 about a year after moving to Germany and suspect change of diet and stress were maybe the triggers. Prednisone works for flares but as you know isn’t a long term solution. I didn’t want to accept the “no known cause” so did a lot of online research and can recommend you read a book by Amy Myers “The Autoimmune Solution”. Keep a food/symptom diary, a simple notebook is good, since a food trigger is hard to identify days after you forgot what you ate! During a flare go low-fibre, no uncooked veg, also no gluten or dairy. There are some great AIP-friendly recipes online that are easy on the digestion. Other contributors to inflammation are caffeine and nighshades. I found that avoiding gluten coincided with tapering off predni the 3rd attempt without a flare so avoided gluten for years after that and did have flares after getting “glutened”. Now I’m doing a gluten challenge during a mild UC flare with predni and pentasa (mesalazine) and doing ok. Still trying to figure it out. Keep a good sleep/simple diet/plenty of water/gentle exercise routine as everything helps restore balance. All the best to you! Ali

  3. For me a good Probiotic was key to getting back to some sort of normal. I use:
    Renew Life Adult Probiotic – Ultimate Flora Extra Care Probiotic Supplement for Men & Women – Shelf Stable, Gluten, Dairy & Soy Free – 50 Billion CFU.

  4. Christopher Ricciardi

    I’ve had good results with a way of eating prescribed by the doctors at ICMNI (Paleomedicina). I had severe pancolitis. They help patients cure their conditions and come off of medications by resolving leaky gut which they claim is the cause of all autoimmune diseases. I’d really recommend a consultation with them: https://www.paleomedicina.com/en

    Hope the best for your daughter and your family.

    -Chris

  5. try this book, it’s sort of updated and upgraded version of scd, don’t know if it’s been published in australia, but surely you can buy on ebay or amazon, or probably download pdf, it did help me, i was on steroids, mesalazine, desperate, off medication now, but strictly on the diet 100 percent, it’s a long distance run, don’t expect miracles overnight, but it will help, good luck with your little girl
    https://www.amazon.co.uk/Psychology-Syndrome-D-D-D-H-D-Schizophrenia/dp/0954852028

  6. There are doctors in Australia that do FMT to help people with UC. I did at home FMT to help our son. Our son seems to think it helped. It wasn’t easy for our son or me. I was the donor. In the US not legal for doctors to perform FMT on UC patients. No medication helped him except prednisone (but we all know here not long term). A diet restricting carbs helped a lot. I know the SCD has helped many. It was kind of like the SCD but he doesn’t tolerate honey or yogurt very well. The best to you with your sweet girl. This website helped us a lot! Thanks to Adam.

  7. It can be a scary time. But at least you are great parents and you know what she has. That alone is a long journey. I was diagnosed 7 years ago and have been through 2 major flare ups. Currently one year free of a flare. I am much older but what I can tell you is it is a journey. Every UC patient is unique and different. So I know that does not help. Predisone is awesome but awful long-term and was really destroying me, my bones and immune system and behavior. However in many cases you need these to get you over the hump. The key is the longer term treatment and over time that can change. I went through many expensive medicines and some were successful or they just stopped working for me. I did change my diet and that does help. Dairy and Gluten for me personally were inflammation triggers. Hard to live that way but my wife does it with me and there are so many options for food now. Stress is a big trigger, hard to not be stressed with UC when you leave the house or travel but is definitely a trigger. Over a year ago I ended up going on a biologic called Remicade. Treatments are every 8 weeks and takes about 2 1/2 hours. Was not a fan of that process and was scared but so far a game changer in many ways. Knock on wood no real side-effects to report. I also take Asacol more so for a cancer prevention than anything. I also make sure I drink a lot of water. Working out which seems like the last thing in the world you would want to do has been important, getting the body moving and mind off of it. I also do various supplements like K2/D3, absorbic acid, apple cider vinegar mixed with aloe water, high B-Vitamin type protein shakes. It has been a long journey and that is why the research is important, your GI doc is crucial. And remembering everyone is different and there is not one treatment plan for all. What I have found works for me currently but can change and not work for others. Also remember you are not along there are many of us out there and is a silent disease. 1-100 people or 3.1M people have Crohns or Colitis and faster growth area is those under 18. Finding a community or a group will help. I am part of the Crohns and Colitis foundation and that has been the biggest eye-opener that I am not alone. Great group, fundraising efforts, and tons of resources. Now I am in the US but could still be a resource. Here is their site: http://www.crohnscolitisfoundation.org . Sorry for the long post just what I have learned over time that I wish someone shared with me. I wish you luck and your daughter. I will tell you there are so many kids and adults living with UC that are living full, productive, normal lives. No cure but hope and new medicines and treatments come out more and more. We have too many smart people in this world I have faith we will figure it out. It might just be your daughter one day.

  8. My heart goes out to you and your little one. Lots of hugs for her and how brave she’s been to go through all of this. Praying that you have clarity on the way to go and that you don’t feel guilty for any of this. You guys aren’t alone. We’re cheering for you over in the US!

  9. Hello Flick G, no matter what you have been told by doctors, there is a natural cure to UC. It involves Chinese herbs and I and thousands are living proof. Feel free to contact me. cdrdan @yahoo.com. best, Dr. Dan.

  10. Humira has been a blessing for my daughter, and as it is a biologic drug, I Have learned they are better drugs than all that prednisone. Also, Dr., Tom Borody in Australia, is having some remarkable success with Fecal Transplants. I wanted to bring my daughter over from the US, but she would not give up law school to go there.I would definetly look him up and see how far he is from you. And, I want you to know that I have a friend who’s young daughter battled UC for years, and just before Humira hit the market, they removed her colon and inserted her bag through a combination of surgeries. She is a beautiful adult woman now, about 30, and has had a baby and is living life fully. Be positive, try lots of things, and know she is not alone!

  11. Hello Mommy of the 6 year old beautiful little innocent angel. My now almost 21 year old daughter was diagnosed with PanColitis when she was 9 years old. She always had an extremely high level of pain tolerance and therefore, we suspect she was battling this cruel IBD for quite some time prior to her diagnosis. She was placed on Asacol (a mesalamine), prednisone and IV’s while in the hospital. Nothing really helped for too long and after taking prednisone on and off for a few months her bones got so brittle that after a dexa scan it was determined she had full blown osteoporosis. Her pediatric GI who is great by the way, wanted to put her on immunosuppressants or biologics. Neither of these options nor the prednisone were acceptable to me so after consulting with many mothers of kids with IBD, reading everything about UC, going to alternative doctors, and regular MD’s I decided I would give the SCD a try.

    I started with eliminating gluten, and dairy (except homemade yogurt that I fermented for 24 hours). I noticed a great improvement in her symptoms, energy, and overall happiness. She started to feel stronger. However, I also had her tested and found she has food sensitivities to corn, soy and oats as well. Once all these things were eliminated as well from her diet she started gaining weight and thriving. I kept her on a maintenance dose for Asacol and she remained in remission for years.

    Although she was always very smart and an excellent student she had ADD. I found that when
    she was in remission her ADD was under control and there has always been a very obvious correlation with her UC flares and her ADD.

    Sometimes there are mesalamines that work for one person but not so for another. Now she can take either the mesalamine generic, lialda, or asacol but there was a time that only asacol worked in keeping her in remission. My daughter was actually off all medications and only following a strict SCD for several years but then when she started high school the stress, and some cheating (eating things that were not on the SC diet) caused her to have flares and have to return to the asacol.

    She is now a junior in college and thriving. She no longer has osteoporosis thanks to AlgaeCal Plus (an easily absorbable plant based calcium). UC is part of who she is and she will always have to live with this but it does not control her life. If you give the SC diet a try I know you will greatly improve your daughter’s quality of life and by extension yours and your family’s. Our whole family went on the SCD years ago and we never looked back. Every so often now we cheat here and there but we have never ever had gluten again. Today there are so many healthy and delicious options. I highly recommend a book which I bought when I decided we would try this SCD and it is called: Recipes for the Specific Carbohydrate Diet. By Raman Prasad

    In addition to this diet, our daughter is/was on several supplements that I credit with keeping her healthy and in remission.

    Pure Encapsulations – Junior Nutrients – Hypoallergenic Multivitamin/Mineral Blend Without Iron for Children Ages 4 and Up, Pure Encapsulations Glutamine 1,000 mg, Pure Encapsulations – OptiFerin-C – Hypoallergenic Dietary Supplement with Enhanced Iron Absorption, Carlson Maximum Omega 2000 mg, Pure Encapsulations Silymarin, & AlgaeCal Plus.

    Have her doctor check her vitamin D levels which are usually low also for kids with IBD. If her levels are low then Pure Encapsulations Vitamin D3 1,000 IU are great as well. My daughter was scoped 6 months after her initial Pancolitis diagnosis and after I started the SCD and he could not believe that this was the same kid. He said she didn’t even have scar tissue to show she had Pancolitis.

    Throughout the years, my daughter’s pediatric GI has requested I speak with other mothers about what I did that worked and they have all had positive experiences following the diet and this protocol. Elaine Gotshall was the creator of this SC diet for her daughter who had UC and she explains why the diet works, in other words, the science behind it.
    Please feel free to reach out to me with any questions and if I could be of any help. I know how hard and how lonely this journey is but, please know there is a light at the end of the tunnel.
    Keep the faith and may God bless you and your little angel.

  12. I am so sorry to hear this about your young daughter. I was diagnosed at 17 and am now 57… I have found through the years that many things did not work for me. I am now on Entyvio infusions every 8 weeks and have been in remission over a year. I got rid of all dairy in my diet and that was a great help. I can still do some cheeses, but have to be careful as to how much and what kinds. Salads are not something I can do often, and I can only do iceburg lettuce when I have salad. No raw vegetables, not many fruits. When having a flare, lots of rice, and potatoes and white type foods. I take a probiotic and vitamins each day to keep everything in check. I pray that your daughter will get her UC under control and have some relief. So difficult for a child to not be able to lead a child’s life. Hang in there and know that you all are not alone. God bless.

  13. Dear Flick G, it is heartbreaking to think your little girl is going through this. I don’t have experience with UC in kids, I was diagnosed as an adult. But I just wanted to send you these links about a gastroenterologist at Seattle children’s hospital, Dr. David Suskind, who treats children with the SCD diet. Maybe you can find useful information there. Have faith. God bless your little girl and all your family.

    https://www.seattlechildrens.org/about/stories/dietary-therapy-for-ibd/

    https://www.youtube.com/watch?v=EBTrD4m1vGU

      1. Hi Tanya!

        I hope your daughter finds remission soon. We are currently on to infusions and hoping that works for our daughter. Please do not hesitate to contact me if you have any questions or even just for moral support from someone in a similar position :) felicitygood@hotmail.com

        Felicity

  14. Diet has helped a ton with me. Eat clean, preservatives are very bad, spicy foods bad, easy on some vegetables. Homemade comfort foods the best. Easy on dairy.

  15. Hi Claire, thanks, I have heard lots of horrible things about steroids and we are trying to get get her off them as soon as we can. Thank you so much for your support!!

  16. Hi Ali, sorry to hear you have UC. I can definitely see the diet and stress link. We have changed to lactose free but still feel it’s not helping so planning on going completely dairy free. We will try gluten free especially careful during steroid reduction and see if that helps. Thankyou for your advice and support! I’ll be sure to read the book you have suggested. Best of luck with your UC and I hope you stay in remission x

  17. Sorry to hear you had pancolitis. It’s a terrible thing to go through. Diet is something we are looking for and Ill be sure to check that out. Thanks Chris!

  18. Hi Flick. I’ve read your story and so sorry to hear about your 6-year-old daughter. I’m 32 and was diagnosed with UC at age 19. In the span of 13 years, I’ve had about six flares each lasting approximately 4-6 months followed by 2-3 years of remission on average. My second flare which occurred close to my first was the worst, and I wound up in the hospital for a week and a half. The admitting doctor at the hospital was curious to see how much blood I was passing and requested I not flush. He said he’s never seen that much blood in his twenty-plus-years of being a doctor. Not very reassuring, but thankfully it’s never been that bad since, and I haven’t had to again be admitted to a hospital.

    You’ll soon gather that everyone experiences UC symptoms differently. Some experience moderate to severe flares and go into remission without any symptoms for years at a time, while others have mild symptoms that are constant. I’ve been opposed to the use of biologics, and consider them a last resort, as your body will build up a tolerance to them in time and they will lose their effectiveness for future flares. My GI doctor whom I’ve had since first being diagnosed, with exceptions during times when I lived out of state, usually puts me on a short dose of steroids along with and immunosuppressant like 6-MP and mesalamine. One GI doctor that I had for a short time while living out of state recommended I get a DEXA scan that measures bone density (had no idea why at the time, but apparently steroids harm your bones over time), and sure enough I have Osteopenia / border line Osteoporosis at age 32. The side effects of steroids are also horrible in my opinion, and far outweigh the symptoms of UC unless you’re in a sever flare, in which case the only time I see a benefit to using steroids.

    My past remission lasted about four years, but I started exhibiting mild symptoms again in November 2019. I had a stockpile of mesalamine and immediately started to take the maintenance dose at first sign, but after seeing my doctor in January and exhibiting moderate symptoms he prescribed I take max dose of mesalamine and follow-up in mid-Feb to evaluate symptoms and decide whether I needed to start steroids and 6-MP. I’ve done a decent amount of research in that time and requested my doctor prescribe a super powerful probiotic called Visbiome Extra Strength. I’ve been taking it for one week now (along with max does mesalamine) and starting to show signs of improvement. I have a follow-up with my GI on Friday, 2/14 where I plan to decline the use of steroids at this time. I’ve read it takes about a month for this type of probiotic to take full effect.

    There are two types of GI’s out there, one’s who will start you out on the least powerful drug and slowly build up until finding the one that has an effect, and others that will push the most powerful drug on you at first sign/symptom. I prefer ones that start slow, and my doctor has discussed the use of biologics as an option but hasn’t ever pushed them on me.

    My takeaways are postpone the use of biologics as long as you can. In the future, limit the use of steroids unless your daughter is experiencing severe symptoms. Work with your child’s doctor, but also be your own advocate an do your own research. You’ve come to the right place for support during this time.

  19. Hi Lynn, FMT is new to us and isn’t even suggested by our gastro team. It must have been hard for both of you and I appreciate your feedback on it. I’ll certainly research it more here in WA. Best of luck for your son x

  20. Web and Print Design

    Hi Flick,

    My name is Nick and I live in Margaret River (sounds like I may be relatively close to you being 3hrs from Perth on the coast) and have kids similar ages to yours attending MRPS. I was diagnosed with UC about 10 years ago when in my early 30’s and was seeing a private Gastro in Perth for several years taking Mesalazine and Azathioprine with regular stints on prednisolone when i flared.

    After about 4 years of hell he suggested a colonoscopy and having it ASAP. This freaked me out so I then got a referral to the Gastro/IBD Clinic at Fiona Stanley Hospital after being recommended to see Professor Ian Lawrence.

    Ian and the clinic had me up my dosage of Azathioprine (which my previous gastro had told me I was on the max dosage for my size/weight), and I have been really well ever since. A couple of flares but nothing major. I have had to have a numerous Iron Infusions over the years but in recent years I am now able to get these at the local GP clinic and only takes about 30 mins vs spending all day in hospital which i had to do on numerous occasions several years ago.

    In recent years I have been able to use Telehealth at the MR Hospital for my appointments with FSH and so don’t need to travel to Perth nearly as often as I used to. FSH also have a phone/email support line that you can contact for advice when needed.

    In the last 6 months I asked the Drs advice and have actually weaned off Azathioprine all together and am now just on Mesalazine. They would like me to now go on a biologic called vedolizumab/entyvio. However, although not supported by the Gastro clinic, I have also started taking CBD oil along with my Mesalazine. At the moment I am symptom free and have been for a few months. I intend to keep trialling this for the next few months to see how things go before deciding if I want to start the biologic and/or wean off the Mesalazine too.

    I would highly recommend the Gastro clinic at FSH and in particular Prof Ian Lawrence. Also if you are interested in talking to a dietitian, my wife is one with clinics in both MR and Busselton and would be happy to have a chat with you. An elimination diet or FODMAP diet might be a good idea to try, although I have found there are a few types of food that tend to cause bloating and discomfort (chick peas, cabbage, beans – think foods that tend to make you fart and avoid) but in general I eat everything.

    Otherwise if you would just like to chat with someone local with experience and understanding of this disease I am more that happy for you to contact me. 0412 644 557.

    All the best for your daughter and family. I hope you manage to find an equilibrium with her disease that allows her to enjoy life with out detrimental effects to her happiness and wellbeing.

    Kind Regards,

    Nick Castle

  21. Fran.. Thankyou for sharing your story. Remicade is a future treatment for her and it’s nice to know it has had success if we get to that point. I did join crohnscolitisfoundation.org and it has been informative. This platform of sufferers sharing stories and information has been the best so far thanks to Adam. Thanks for your advice and support and I hope you are doing well.

  22. Hi Sarah,
    it’s very easy to wonder what you did as a parent to give her UC but I do understand now that it was completely out of our hands.. it’s so heartwarming to feel supported by you and everyone on this site!

  23. Hi Kelley,
    It’s so nice of you to offer your support and advice. I’ll be searching Dr Tom Borody. I’m glad your daughter has had success with humira, it’s also nice to know that even after surgery you can have a fulfilling life. X

  24. Marie,
    It’s nice to chat to a mum who has gone through something similar. I feel for you and your daughter. I’m glad you have found success and Thankyou for sharing! I’ll be looking into the diet and products you have mentioned and fingers crossed we see improvement. X

  25. Hi Frannie D.
    Thanks for your support and advice! It is a long time to have had UC and I appreciate you sharing your experience with it. X

  26. Kevin,
    Thankyou for your story and support.. Thanks for your view on biologics. A bone scan and probiotics is something that I’ll be looking into.

  27. Hi Nick,

    We live north of Perth but in the scheme of things we are pretty close! Thanks for sharing your story and advice.

    Our girl is currently going through PCH. After mesalazine was unsuccessful she wasn’t suitable for azathioprine so her gastro team suggested tacrolimus. It’s something given to transplant patients to stop organ rejection but has been successful in UC. We are only a week into it and need blood tests 2-3times a week for two weeks then once a week for 4 weeks, along with regular doc appointments it’s a lot of travelling and stress. Side affects can be nasty so as parents we are nervous and sometimes feel like she is a just a guinea pig. At the moment the docs are good at PCH but also I’ll look into Fiona Stanley Hospital. I want the best treatment for her.

    Telehealth was great for when things were going well but it was a bit hard discussing stronger medications and sometimes signal was bad so they suggest we go back in to appointments.

    It is so nice having yourself and your wife’s support. My husband may be interested in picking your brains further, especially from someone who is somewhat local and living with UC.

    Thanks for reaching out and all the best with your UC!

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