My young daughter has Ulcerative Colitis
Hugh Freaking Dillon
Posts: 14,010
My 7 year old daughter was recently diagnosed with a mild case of UC. We are currently in the early stages of it, trying to find what medication(s) works and what doesn't.
She went in this morning to have a liver ultrasound, apparently a routine thing for UC patients to make sure the liver is working properly. Her specialist's assistant happened to walk by while she and my wife were waiting for the ultrasound tech and said "has she (looked) like this all weekend?". She had. Super low energy, depressed, etc. But she also has a cold, so we weren't totally sure if it was the UC or a mixture. She might get put on steroids today as nothing else has helped thus far during her first post-diagnosis flare up.
Any tips would be greatly appreciated.
Kids are supposed to be kids. They aren't supposed to have chronic diseases. This breaks my heart, and I can't stop crying today. On the "bright" side, they did say it was mild, and my sister has this as well, and she lives a completely normal life. But she also didn't get it until her mid 30's.
She went in this morning to have a liver ultrasound, apparently a routine thing for UC patients to make sure the liver is working properly. Her specialist's assistant happened to walk by while she and my wife were waiting for the ultrasound tech and said "has she (looked) like this all weekend?". She had. Super low energy, depressed, etc. But she also has a cold, so we weren't totally sure if it was the UC or a mixture. She might get put on steroids today as nothing else has helped thus far during her first post-diagnosis flare up.
Any tips would be greatly appreciated.
Kids are supposed to be kids. They aren't supposed to have chronic diseases. This breaks my heart, and I can't stop crying today. On the "bright" side, they did say it was mild, and my sister has this as well, and she lives a completely normal life. But she also didn't get it until her mid 30's.
Gimli 1993
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Fargo 2003
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Winnipeg 2011
St. Paul 2014
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I have no tips. Only good thoughts I can send your way. Stay strong for your daughter. You are right, no kid should have to go through any of that. But if she has strong, loving parents, she will be in a great position.
first thing ... cut dairy and gluten
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.
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.
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.
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Fargo 2003
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Keep us posted. I wish your family all the best.
You can't control everything, just know that but you can make it workable both for them and for you.
Good luck.
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.
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I look forward to hearing about your daughter's progress in the months and years to come.
Cheers and be well,
BS
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
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Good thoughts from here, HFD.
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.
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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.
6/19/95 Red Rocks
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4/16/16 Greenville 4/28/16 Philly 1 4/29/16 Philly 2 5/1/16 MSG 1 5/2/16 MSG 2 8/7/16 Fenway 2 8/20/16 Wrigley 1
4/7/17 RRHOF New York City
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what was her reasoning!? ... i'm not a medical professional but i do have my WFR and i've seen my share of hospitals and the one thing I believe in is that as complicated as the human body and condition is - often many things are really quite simple ... as a GI specialist - she should be able to explain why that diet would not work and it should make sense to you ... you need to advocate for your daughter and the best thing you can do is to do your own research and ask as many questions as is necessary ... for sure, you need to put a little bit of trust and faith into the medical professionals but if ultimately their priority is the well being of your daughter then they should treat your contribution as a positive ...
my very good friend has a young infant with medical issues and she has made astounding progress (not without setbacks) but that is because my friend is active in her care and not just simply let the doctors do as they should ...
it's a fine line but doctors at hospitals see a lot of patients and not everyone is the same ...
I don't think she gave any concrete reason. except that no diet is a cure, and that kids need all good foods (including grains) and cutting anything out is a mistake. unfortunately, I wasn't at this one, my wife was, and if you've got a degree, she automatically believes every word you say. just suggesting this to her yesterday got me a "are you crazy?" look. but I don't know if giving her 3 different meds 5 times a day is the right course. how hard is that going to be on her little body. steroids for a 7 year old girl? I hate that north america cures everything with meds and not nature. we need some more progressive people in the medical community with very loud voices.
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yikes ...
i know you are in a tough spot and i say the following only in the interests of your daughter and her only ... doctors are not always right nor are they immune to being swayed by pharmaceuticals and special interests (see wheat board and milk board) ... you need to advocate for her and the best way is to do as much research as possible ... think critically and ask the questions you want answers to ...
i'm not saying to ignore her medical team just simply that from here on out - you are part of that team and you need to have a voice and you need to be heard ... your daughter has a condition that is the result of an inflammation of the bowel ... that means something has caused that inflammation ... it isn't a huge stretch to consider food as a primary reason ... if diet isn't the first response to this - something is wrong ...
thanks polaris. I have never been the type of person to believe someone just because they have a PhD. Everything is opinions based on research. Including this diet. And even her doctors admit there is no universal treatment for UC, so it's interesting to me that they'd so quickly dismiss something that doesn't come from them. Her specialist even told us that he and the most respected GI specialist in Canada disagree on some of the treatments he is prescribing her (her doc thinks stopping the meds when she's in remission is a mistake, this "big guy" is of the opposite opinion). So I'm going to look into that too.
I have heard so many stories already of people not taking any meds and being symptom free for years. So that's a positive. I guess this is my new purpose. I'm going to do all I can and spend every free moment helping my daughter through this and fighting for her health.
She is, after all, my little princess.
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I couldn't agree more polaris_x and awesome that you are ready to advocate for your daughter HFD. In my experience GI docs want to treat the symptoms not find the cause. Again not all but until we found the right doc I often felt like I was talking to a brick wall and occasionally made to feel like I was actually harming my child. Many of them simply don't understand nutrition and just want the quick fix.
Edited to add... Also the quick fix is appealing to patients/parents bc you think the suffering will stop quicker. It's not a long term solution though. You just have to keep coming back for more meds. Dietary changes are hard initially but in my opinion are often necessary for long term wellness
6/19/95 Red Rocks
9/11/98 MSG
11/19/12 EV solo Tulsa
7/19/13 Wrigley 10/19/13 Brooklyn 2 10/21/13 Philly 1 10/22/13 Philly 2 10/25/13 Hartford
10/08/14 Tulsa 10/09/14 Lincoln
9/26/15 NYC Global Citizen
4/16/16 Greenville 4/28/16 Philly 1 4/29/16 Philly 2 5/1/16 MSG 1 5/2/16 MSG 2 8/7/16 Fenway 2 8/20/16 Wrigley 1
4/7/17 RRHOF New York City
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yes ... you are part of that medical team now!
and ditto to everything shetellsherself has written ... you might need to reconsider who is part of that team ...
many ailments could be fixed in today's society through dietary changes ... start there ... i'm about to lead a trip to Iceland and 6 of my 14 participants have gluten and/or dairly intolerances ...
I agree with both of you. Finding the right doc was key for us in dealing with my son's gu problems. And the more reading and research you do on your own will make you a much better advocate for your daughter. As my husband often says, "This parenting thing isn't how it appeared in the brochure. . . "
http://gapsdiet.com/
6/19/95 Red Rocks
9/11/98 MSG
11/19/12 EV solo Tulsa
7/19/13 Wrigley 10/19/13 Brooklyn 2 10/21/13 Philly 1 10/22/13 Philly 2 10/25/13 Hartford
10/08/14 Tulsa 10/09/14 Lincoln
9/26/15 NYC Global Citizen
4/16/16 Greenville 4/28/16 Philly 1 4/29/16 Philly 2 5/1/16 MSG 1 5/2/16 MSG 2 8/7/16 Fenway 2 8/20/16 Wrigley 1
4/7/17 RRHOF New York City
9/2/18 Fenway 1 9/4/2018 Fenway 2
9/18/21 Asbury Park
2/4/22 EV Earthlings NYC 2/6/22 EV Earthlings Newark 9/11/22 MSG 9/14/22 Camden
9/3/24 MSG 1 9/4/24 MSG 2 9/7/24 Philly 1 9/9/24 Philly 2
Can't ask for much more than that. One smile at a time.
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