My young daughter has Ulcerative Colitis

Best wishes for your daughter and your family in supporting her. I know nothing about this, sorry.

My ex-girlfriend had UC.
For the most part she was able to maintain a normal lifestyle, but on occasion she'd get flare-ups.
She took Asocol which worked well, then switched over to Delzicol...both are the same drug (Mesalamine).
Both are pretty pricey too so I hope you have good insurance.
Whatever your daughter takes, be sure she doesn't miss any doses as it can cause flare-ups. When that happens, more drastic measures have to be taken (steroids, suppositories, etc.).

Sorry to hear about her disease...just know that once she finds a drug that works, she will def be able to maintain a normal lifestyle.

Sorry to hear about your daughter’s diagnosis. You’re right, kids should be able to just be kids. My niece and nephew have Cystic Fibrosis and they have daily routines/medication to take just to stay alive and healthy, and you hate for kids to have to go through that. But again, it KEEPS them healthy.

Once you find what works best for your daughter, you should see an improvement. With UC, it usually is finding the right diet and sticking to it. I would keep a diary of what she eats for a month, and monitor her reactions so that you know what causes any discomfort or change in her color or behavior and adjust her diet accordingly.

Best wishes to you and your family.

I'm so sorry to read about this. it's tough when it's a young child and their diagnosed with a disease. It looks like it may run in your family since your sister has this. It looks like your sister will be a great help to your daughter and hopefully will make this much easier to handle.

Keep us posted. I wish your family all the best.

My thoughts are with you and your daughter HFD. I have a little boy with a chronic condition as well. And it is heartbreaking at times. The tests my little guy had to endure at age 4 were enough to make a grown man roll into a ball and cry. And he endured it all with tears in his eyes, but hardly ever made a sound. That would send me right over the edge. He is 10 now and things have improved a great deal. I hope that with the right treatment you will look back at this time as a bad dream. In the meantime, if you need a listening ear, we are here.

Sorry to hear the bad news but looking on the bright side, atleast she has been diagnosed. It took my Dr. more than 9 months to diagnose me (Crohns, in 2002 when I was 11), which really sucked because I was having some horrible pain back then. (I am 22 now)


My first tip: Don't take any advice as perfect truth. Some things people swear-by will not work. Some things people swear won't work will work. She needs to try everything for a reasonable amount of time to determine if she likes it herself or not.

Work carefully with her GI to fight the pain, which is something I wish I had done more back then. I just figured I had to live with it.. If you see a medication starting to stop working, change medication. Fight this thing aggressively.

I have found that diets are more hassle than they are worth, imo. I have learned to avoid certain foods but dont follow a specific no gluten, SCD, etc.

Sign her up on https://crohnology.com/ . This is an awesome facebook-like website that other people with Crohns and UC can share stories, ask questions, find what treatments work, etc.

Having UC is better than having Crohn's. Crohn's is inflammation anywhere in the digestive tract, so to be completely cured, I would have to remove my entire digestive tract, which isn't possible. UC is only inflammation in the colon, which if removed, you can still live.

If you have any more specific questions I would be glad to answer them as best I could having Crohns and not UC.

Hugh Freaking Dillon wrote:

polaris_x wrote:

sorry to hear about your daughter's condition ... from what i know of this - it's treatable and she should be able to live a relatively normal life although i suspect she will have to make dietary concessions ...

first thing ... cut dairy and gluten

yeah, I've been reading about the Simple Carbohdrate Diet. It's not one of those "quick fix" diets like Atkins or anything like that, just making choices based on the history and evolution of our species. It's quite timely, as I've been thinking a lot lately about what we, especially North Americans, consume, and how horrible it must be for our bodies.

it basically states that the human diet has evolved too far ahead of the human body, which is a key factor in human illness. which makes perfect sense.

that being said, I've only done minimal research on it and need to do more. but it grabbed me from how logical it sounds in its simplicity.

Wish I didn't know anything on this topic and I won't clutter your thread with our story. I will say that I feel strongly that the right foods are healing and the wrong foods the opposite. I immersed myself in researching this topic for a number of years to help my son who was suffering so badly. He is now medication free and eats almost everything. Read, read, read. Specific carbohydrate diet and GAPS (gut and psychology syndrome) are great places to start. Thoughts and prayers for u and your daughter.

Jen

barger395 wrote:

Hey HFD, I'm really sorry to read this about your daughter. I wish I had answers for you, but I do not. Like everyone else here, my though are with you and your family. I have the utmost belief in the power of the human spirit, and by reading your posts, I'm sure your daughter has the same strong fortitude, just like her Dad. Which leads me to believe she is going to come through this a stronger person!!

I look forward to hearing about your daughter's progress in the months and years to come.

Cheers and be well,
BS

This well-spoken fellow up there said what I wanted to, but so much better.

Good thoughts from here, HFD.

Hugh Freaking Dillon wrote:

shetellsherself wrote:

Wish I didn't know anything on this topic and I won't clutter your thread with our story. I will say that I feel strongly that the right foods are healing and the wrong foods the opposite. I immersed myself in researching this topic for a number of years to help my son who was suffering so badly. He is now medication free and eats almost everything. Read, read, read. Specific carbohydrate diet and GAPS (gut and psychology syndrome) are great places to start. Thoughts and prayers for u and your daughter.

Jen

my wife asked a GI doc yesterday about the SCD and she responded with a resounding no. I don't get it. it's not like fucking atkins where you eat only bacon and no carbs or something stupid. it's just eating what humans have naturally evolved to digest. again, I've only read a minimal amount. I need to research more. But of course my wife agreed that eating no grains is terrible.

It took us awhile to find a doctor who was willing to even discuss diet and nutrition and my son suffered the whole time. When we found the right doc to guide us it made all the difference for us. This is a good understandable book that describes what's going on in the digestive track in scientific but understandable terms.

http://gapsdiet.com/site/dc5a8ec29ce74f ... om%2F#3093


Don't be scared off by the fact that on the surface this book seems to address neurological implications of gut dysfunction. It's much more than that. My son had some behavioral issues but his symptoms were mostly digestive and food allergy. I know grain free sounds crazy. We did it for quite awhile while he healed. Now he eats high quality gluten free grains along with almost anything else. We caught all of this when he was just a baby so he healed fairly quickly.