Ulcerative Colitis in 12 year old sister

[Saredances]

My younger sister is 12 years, soon to be 13, and was just diagnosed with Ulcerative Colitis. She and my mom both have high anxiety issues. My younger sister has been in anxiety meds for a year now and they have helped tremendously in giving her her life back and giving her the ability to understand what her anxiety was doing to her. Now however the anxiety has resulted in an ulcer in her large intestine and a diagnosis of colitis. I don't know much about this disease, only the little bit I have read while doing quick google searches on my lunch break. The more I read about it the less I want to read about it. I'm sure that I'm just nervous of what information I might find out about this, I recently read about someone who had a sever case of colitis and couldn't eat apples! it pretty much scared the heck out of me. I've of course been worried about my sister and my mom, but my mom even more so after I saw her on ichat this morning. She isn't handling this hospitalization or the diagnosis well at all. She's hardly getting any sleep, barely eating. I'm flying home in the next two weeks for sure, but my husband and I are trying to get home next week, don't know if that will work out though. Any advice on how I can help my mom cope through this would be wonderful. When I get home I will completely take over all household chores and looking after my other younger sister who is 10, so my mom won't have to worry about anything extra.

For the future: what I've read thus far it seems she will need to make a drastic change in the way she lives her life. I would love to get her into yoga. I'm no Yogi but I do practice it as often as I can manage with my schedule, what would be appropriate for her age? I also read an article about meditation for children, has anyone tried teaching this to children 13 years? How long until she can start doing these kinds of practices once she is released from the hospital?

I guess I'm just looking for positive advice/information about living with colitis, on how to help my sister heal, and how to help my mom cope and get to a better place. I don't even know what questions I should be asking.

[lolar2]

I have Crohn's colitis, which is closely related (and in my particular case nearly identical) to ulcerative colitis. I was diagnosed at 13.

The first thing to know is that neither Crohn's nor UC is caused by anxiety! You wrote, "Now however the anxiety has resulted in an ulcer in her large intestine" which is absolutely false. Certain kinds of stress can cause a flare-up, but the current thinking on the disease itself is that it is a combination of genetic susceptibility, autoimmune response to the excessive hygiene in the west (same as other autoimmune diseases such as lupus), and possibly some sort of viral or bacterial infection picked up from the environment.

Also the disease can cause anxiety and depression. Some people get anxious and depressed because of being sick and in pain. Other people who have a lot of disease in the small intestine, don't produce enough serotonin from the small intestine, and that causes depression, but that is not going to apply to someone with UC.

There are mild, moderate, and severe cases of the disease and there is no telling what your sister will end up with after this first flare-up. It certainly is common for many of us not to be able to eat apples, at least raw apples with skin-- fruit and vegetable skin can be very difficult to digest. During the summer, especially, when so many delicious fruits and vegetables are available, I have to be very strict with not allowing myself to eat too many-- but then, sometimes I say to heck with it and have a delicious summer meal including coleslaw and corn on the cob and melon for dessert, and I just don't leave the house or plan to accomplish anything the following day.

Yoga and meditation may help her anxiety, and her doctor can tell her when it is OK to do the yoga (I'd think meditation could start any time), but they are not likely to have any effect on her disease process. Also remember if she is taking any kind of steroids, those can cause severe anxiety in and of themselves, so don't worry too much if she seems to be experiencing those symptoms.

I don't know how she has been living her life before that makes you say she needs to change it, but in any case, I recommend the following sites for learning more about UC:

http://www.ccfa.org (Crohn's and Colitis Foundation of America, includes a pdf brochure of what school accommodations to put in an IEP)
http://www.ibdsucks.com (support group/ message board)

And about living with chronic illness in general:

http://www.butyoudontlooksick.com/ar...e-miserandino/

As far as "natural" healing and such, for inflammatory bowel disease the best things are probiotics. If she ends up taking a medication that could affect her liver, some people take milk thistle if their liver enzymes go bad. When I was on that medication (6mp/ azathioprine-- they are similar), my liver enzymes were always fine so I never bothered.

I won't lie, this CAN be a very serious disease and I'm not going to be sunshine-and-roses about it. I'm on, like, my 6th-choice career because of limitations of my disease, and I probably would have more children if I hadn't been too sick to TTC for several years, and I have had medication side effects that nearly killed me and others that left my appearance permanently changed. BUT right now, I basically have a normal life, and I know other people with the same or similar diseases who haven't had those kinds of problems, as well as other people who have had it a lot worse than me. So you just never know. One very important thing is medication compliance; which is also especially hard for adolescents! But there you go. Your sister should know that if she is unhappy with a medication, she should ask for a doctor appointment to get it changed rather than just go off it (steroids especially are very dangerous to wean off of cold turkey).

PM me if you have any more questions that you don't want to post here, and I'll keep checking the thread too.

ETA: if she isn't sleeping, sounds like she may be on high-dose steroids? Does her doctor know she isn't sleeping? I don't know if there are sleeping aids that a 12-year-old can take, but if there are, she might need them to counteract the steroids. Lack of appetite is a normal symptom of UC.

[Llyra]

I also have ulcerative colitis. I wanted to speak up and repeat clearly, like the PP did, that ulcerative colitis is not an ulcer. It is not caused by stress. It is an inflammatory disease of the colon, the cause of which is poorly understood. Everybody under the sun in the natural-healing world seems to have an opinion about what causes it, and all of them say something different, and the medical world is still not sure.

Anxiety can certainly aggravate the condition. And the disease itself might lead to a LOT of anxiety-- because of pain, discomfort, embarrassment, fear, etc. Especially for a young girl, who's likely self-conscious about her body and the privacy of her body.

It's important to realize, too, that changing diet and lifestyle alone may not be sufficient to get the disease under control. Most of us with UC do resort to medications, especially during phases when disease flares are particularly severe. It is very important that it be controlled, to reduce the risk of life-threatening complications.

It's scary, to find out you have an incurable, lifelong disease. Especially when you're young-- she's going to live with UC for the rest of her life, and that's a very frightening thought. She may need a lot of emotional support, and maybe even some professional counseling, to come to terms with that, and to get serious about taking care of her health. I wouldn't go pressuring her into anything like yoga unless she displays an interest, especially not at first. She may need some time just to come to terms with this. Plus, if she's been sick for awhile, her body may be weakened and she may not be ready to take on any kind of physical activity right now. During my last colitis flare, I found it challenging to walk from the front door of my house to the back door, let alone do yoga.

That said-- people with UC can live perfectly normal lives. The disease can be controlled, so that it doesn't have to have a huge effect on the day-to-day of her life. I take meds twice a day, and avoid sugar and a lot of starchy stuff, and otherwise, I hardly even think about my colitis on a daily basis.

I wish her the best of luck. I'm happy to answer questions if there's anything you or she or your mom are wondering about, too.

[lolar2]

I should say, one positive thing for me about getting sick in middle school rather than as an adult is that I didn't have the devastating change of self-image and plans that my friends have told me they had who got sick as adults. I could "own" the sick/ disabled identity and incorporate it more easily, I think, because I still was forming my sense of self-- sort of like how I speak French well because I learned it as a child, while my Italian is iffy because I learned it as an adult. If that makes any sense.

[MomOBrien]

Hi this is Saredances mom. Thank you for your replies. My daughter meant that I was the one not sleeping or eating. My twelve year old is sleeping great. She is home from the hospital after a three week stay and is getting stronger every day. She still has a pik line and a tpn bag. They also have her drinking Vital Jr. nothing else at this point. She wants to eat so bad! She is on several meds....vitamins, iron, two different anxiety meds, steroids apriso....I think thats it. The anxiety meds did help with the pain. I think she was too stressed out in the hospital and they helped calm her and the pain went away. I haven't read too much about colitis at this point. I just want her to heal first and then I will take it slow with the info. Thank you.

[MAMom]

I love this blog/website of nutritionist Meghan Telpner who cured herself of "Chronic Active Ulcerative Colitis" through a combination of lifestyle changes and dietary overhaul. She posts wonderful recipes and many other tips, info and inspiration. She also does retreats, classes & workshops (in Toronto), and publishes e-books and guides.

(here is her letter to the GI who diagnosed her 4 years after being symptom-free)

[Stayseeliz]

My sister was dx with this over ten years ago. She manages hers through routine colonoscopies, exercise, low stress and dietary restrictions. I know anxiety is not the cause but it really contributes to this disease flaring up!

[genifer]

http://www.healingwell.com/community/default.aspx?f=38

thats another forum that I found extremely helpful and informative. I had UC for five years and didnt learn as much about it from the medical establishment as I did from being a member at that site for a month. There's a lot of people there who know a lot about the disease.

I second what others have said. Im not going to repeat any of it bc its all up there in pp's. The only thing I would strongly suggest is to find what meds work for your dd/lil' sister and that she stays on them and gets on the road to remission. I was living in a part of the UK where the medical est. must have been overburdened bc they pretty much left me high and dry after my diagnosis. I didnt even realise certain meds (asacol/Mesalamine) was a maintenance medication. So I went off my meds and I suffered, without knowing why, for five years. Im thankful it didnt spread in that time (Im told it can spread to healthy parts of the colon but its not always or even usually the case).

My plan with MY uc is to take my maintenance meds (asacol) and do my best to stay off steroids. They are a nightmare to get off of and the side effects arent worth getting back into the place where I need them.

Something to keep in mind is that this disease is very unique to the individual. No two people will manifest the exact same symptoms and everybody's maintenance of the illness will be slightly different. Im also on the Specific Carbohydrate Diet (scd). I dont know if he diet does help ME, Im in the very early stages of it, but it is helping me eliminate foods that I dont tolerate very well. And yes, to my dismay, raw fruit and veggies just hurt to eat. Ive eliminated ALL grains, sugar (except honey), dairy (except homemade scd legal yoghurt), and a whole host of other foods until my guts are healed enough to tolerate them all again. Even chocolate!. But I suffered for so long with it that its not worth even sniffing the stuff!!

heres a few links for info on scd.

this one is the official scd website http://www.breakingtheviciouscycle.info/index.htm

this one is a site specifically designed for children with autism but it is VERY informative about the diet. I use the recipes and have read thru the entire site (virtually) and it gave me all I needed to know to begin the diet and how to progress.

http://pecanbread.com/p/

Some people say they have been healed thru scd. Im not suggesting it works for everyone tho. Like I said, at this stage in the diet and with my illness, its atleast helped me eliminate foods that my digestion cant tolerate.

[MomOBrien]

Thank you everyone for your posts...I will be checking out all of the links!