UC teen

I have 13.5 year old daughter diagnosed by one of the 3 GI we've seen with UC. A week after starting her medication (Pentasa and Salofalk) I also removed her gluten, dairy and 98% sugar from her diet.
Her mucus and bleeding has stopped within 2 days. She did not experience any pain while in full flare but what alerted us was the blood in the stool.
After 3 weeks of regular stools yesterday she had some blood on the tissue.... She has more than usual fresh juices in the past 3 days and we suspect this to be the reason. However...
Does it mean she in no longer in remission?
There are a lot of questions on my side as a mother of a teen just going through this traumatizing diagnosis as currently we live abroad and the medical support in East Europe is limited. It will be great is I can link with parents that are going through the same difficult stages as we do.

Any advice on long term consequences for a teen with UC based on personal experience are welcome.
thank you all

Post Edited (eca) : 10/20/2017 7:51:36 PM (GMT-6)

She's flaring and you should notify her pedatric gasteroenterologist. Flares can start mild and become severe if left untreated.

What form and dose of pentasa and salofalk is she taking? I ask as they come in oral pill, suppository, enema, and foam forms.

Hello to all of you up there

Sadly I'm learning yes that there is no way out yet after 8 weeks of treatment. As well I've introduced too soon perhaps fresh juices for her as I am stressed out with her absorbing nutrients and not stop the growing....

I'am contemplating the SCD diet but afraid to apply as she has been very selective with what she eats and it will be extremely challenging to adhere so strictly to this diet.

This set up after such an early victory takes me back into the depression I plunged back on August 30th when they gave us the diagnosis.

She has now 3 bm a day kind of soft no blood but some of them are very small quantity and have some kind of mucus. She craves sugar a lot and eats a lot of bio honey...

Unfortunately the GI will only follow the blood test so we do not get advice on her nutrition, hormonal, growth impact....A lot of questions unanswered...I will try to search the threads to find some other members that have kids at similar age.

Currently

13.5 yrs female

UC Pancolitis since sept 2017

Pentasa oral 500 mg 3x a day

2 types of probiotic;folic acid;teens multivitamin

homeschooled

Thank you for this great support network you've build here it an amazing resource of energy and leverage of experice

Anxious mom of 13

Pediatric cases of UC aren't all that unique or different than adult cases. They're treated pretty much the same. The same treatments are used, usually the same or similar doses, etc. Colorectal cancer odds do increase the longer we've had UC, as she's starting off so early in life it is very important to have her UC well managed with an appropriate treatment plan, with long remissions and infrequent and mild flares. You want to nip UC in-the-bud, stop UC early from spreading in extent and severity, and control it well to give her the best quality of life and the least odds of CRC.

Psychologically, having UC while going through school can make it a bit more challenging (nobody wants to feel different than their peers, UC involves bathroom urgency and the taboo/gross subject of poop). You said she is home-schooled, so it is less of an issue, in her case. Compliance with taking medications can be more problematic with children who don't take their illness as serious, are forgetful, or just don't want to take their medications when they are feeling well. Lord knows I was a very stubborn and strong-headed child lol.

I'd caution you against going medication-free due to the risk of her UC increasing in extent and severity, and it increasing her lifetime CRC risks. Anti-inflammatory mesalamine (active ingredient in asacol/lialda/pentasa and others) decreases our odds of getting CRC, so take that at minimum. If you see results with your natural treatments then please use them in addition to her medications (not in exclusion of medications). Do everything that helps.

Fresh juices don't cause flares. Maybe I would look out for fructose intolerance but that's it.

For hormones see an endocrinologist.

hi bewell1
thanks for your reply, I am looking forward to interact with parents as you that are in similar situation.
Since we're just new to this I have a lot of questions and I do hesitate in trying too much stuff alternative in the beginning. Was she eating a lot of sugar, wheat before ? Why did you select the Chinese herbs out of other alternatives? How long has she followed this combination? What is flavonex and what kind of supplements do you administer her? Does she have any hormonal changes due to UC ? (menses that stopped)
What is the best advice you can give me in terms of how to discuss with her about the topic? I find the literature on UC is very pessimistic....
My daughter is homeschooled starting this year (coincidence not planned really) so we are managing smoothly but except for blood works every 5 weeks her pediatric GI does not really advice to much...
Not sure how remission should look like except for following blood test and calprotectin levels...

Oh, by the way, one big thing to learn about UC is that everyone responds very, very differently to treatments. What is one's miracle solution, does absolutely nothing for another, and even makes another's UC symptoms a whole lot worse.

I do understand the desire to research and see what other people's solutions are to UC. THere's a warning on applying them to your daughter. As there's absolutely no guarantee that my solution will be her solution, or anybody else's solution for that matter will be her solution either. UC is just so darn individual. And when you research treatments you will see this: SCD worked miracles!, SCD did nothing, and ugh SCD made my UC a whole lot worse (everything is full of contradictions for that reason). Same goes with the medications, Pentasa can be wonderful and work brilliantly, pentasa made no difference, and pentasa can cause an allergic reaction that makes one feel horrible and triples their symptoms.

Trial-and-error and patience are key. Try a treatment for a month, if it helps then keep it, if it doesn't help then try something else. Try them one at a time, give them long enough to work, and expect to see results. Don't put blind faith in any internet testimonial and take something indefinitely just because it worked for another. Test it, see if it works for yourself. Many things will not work, and only a few actually will.

Unfortunately there is no one-size-fits-all solution for UC. Nothing universally works for everyone with UC.

Post Edited (iPoop) : 10/25/2017 6:50:53 AM (GMT-6)

Diets like SCD have done nothing for me. So there you have it, a success story followed by a failure story, and that's just UC.

Food diaries can help. Write down what you ate, the UC symptoms the day after, and look for correlations. For example, every time I eat spicy chili I have a really bad morning. And that's an everytime thing, a reaction has to happen multiple times on the same food to be truly a negative affect. As UC can just randomly give us bad mornings for no bloody reason. Sometimes you can make correlations from the food diaries and other times we cannot. It is, however, worthy of trying.

Elimination diets are another possibility. Eat the same exact thing every day for a week to know your baseline. Then gradually reintroduce foods one-at-a-time and look for bad reactions.

It's possible to have a non-celiac-gluten-intolerance, a lactose issue, or to have an intolerance to a specific food.

You're a good mom. I understand the anxiety... I knew a girl who was diagnosed with Crohns at 7 years old and that's a pretty rough road. We all suffered vicariously through them. Having someone you love being in trouble and not knowing exactly what to do is the worst feeling.

I'd like to add to some of the advice and mainly suggest that you take things slowly, and don't make too much out of a day here and there of blood or mucous. If you find a treatment plan that works and you'd like to reduce the medication, I would suggest that you do it slowly. When it comes to the occasional bad day when blood is spotted, I wouldn't view it as a setback but as a data point. If she starts to trend toward having blood with every movement then you can dial up the treatment a bit. This is a slow disease with no quick fixes. It sounds like she's having more good days than bad days, so you're probably on the right path.

I think it's great that you're aware of alternative treatments... a lot of them can potentially help. There's no one-size-fits-all alternative cure for this condition but if you find something that helps, that's fantastic.

Either the steps you took with diet worked or the oral Pentasa worked, so that's awesome. Ask your doctor if Asacol or Lialda might be more appropriate, depending on where he disease is located. If she's getting better, keep at it. I understand not wanting to go on steroids. If she continues to have issues or if she gets worse, talk to your doctor about mesalamine suppositories like Canasa and if that treatment would be appropriate for her condition. That might help her avoid steroids for a much longer time, maybe forever.

This disease is overwhelming at first. Your daughter's disease will be individualistic and unique and it'll take months or years of trial and error to find out how to completely manage it, and even then there might be setbacks. It's not as daunting as it sounds though, because a lot of people spend most of that time in remission until they screw up with forgetting meds or with a big dietary snafu, and then they live and learn from that mistake. It's cool that you're helping though... I didn't have that luxury with my own parents.

One more thing about alternative treatment... sometimes it helps a lot, but please make sure that you've found a good GI who works with a lot of UC patients or specializes in it, and take serious consideration of what he or she says. If the doc suggests a treatment you're uncomfortable with you can explore options with them, but if they strongly recommend maintenance medications, please seriously consider what they have to say. A lot of people have long periods with great quality of life on some very mild medications that will prevent flareups and colon cancer and will have little or no side effects.

Hi...we learn through experience. Your expectations are very high...time to zone into reality.

I would have suggested her oral med be increased to at least 2400mg daily and that she be put on the retention enemas of at least 2g at night and the suppositories during the day.

Has she had her vitamin d and b12 checked?

I assume she willnhave ups and downs wih period and hormones. Her cramping related to UC spasming can be helped with dicyclomine starting at 10mg.

I strongly suggest med increase.

What probiotics is she on?

Hang tough....this phase of healing can take a long while.

q

My son was diagnosed with uc pancolitis in aug 16 and was put on asacol 1600 mg per day. But since then he never went to solid remission. He got a severe flare in jan 17 which was treated with steroids for three month. He was fine for 2 months again the symptoms started. He had intermittent blood in the stool. After a recent colonoscopy his ulcers are still active and his gastro is putting him on humira.
He was on a healthy diet with probiotics and turmeric supplement but still uc was not in control . Has anybody tried humira for young kids..