Hopeful and Scared for My Daughter with Colitis

Hi my name is Roberta, and I’m from Puyallup, Washington.

My 12yr daughter came down with Ulcerative Colitis recently and I’m having a hard time dealing with this. I am so afraid for her. I just want her to have what used to be a normal life.

Just Allow Her a Normal Childhood and Life

My 12 yr old daughter came down with UC back in April 2014 on spring break. It took 3 doctor visits and 2 Emergency Room visits before I dragged a doctor in the bathroom to show her when I see my daughter using the bathroom.

She is in so much pain, she always cries and screams.

We went the next day to see an GI doctor and had tests done with results. It’s heartbreaking. I am so scared for her. She put my daughter on all kind of medications. One was prednisone that worked fast and made her feel a lot better but she was not happy with her big moon face.  It was recital time.

Well she did the full time with prednisone but we started to get off them slowly by 5mg every week.  Soon we hit 10mg/day and it came back. It was during one of her recitals. She loves dancing so she didn’t want to go home.

I been keeping and watching what she eats. It’s a big adjustment on the whole family. We are going back tomorrow to see the doctor. She was giving another medication. Plus she take an enema at night. Feel like I’m falling apart.

My husband is constantly on the internet with all these ideas that other people had luck with. Like having a juicer. No carbs and some herbs from India. He’s driving me crazy. We was suppose to go to New York this week but I cancelled until August. Now I am so afraid to leave this state with long airplane rides. I just want her to have a normal life. She won’t do sleep overs anymore. She seem to want to stay home. My teenage son is also very stress about this. Just need some one to talk about this. My family lives back east and I really don’t have anyone here in Washington.

written by Berta

7 thoughts on “Hopeful and Scared for My Daughter with Colitis”

  1. Hi Berta

    so sorry to hear about your daughter, it’s not a nice thing to have for anyone let alone a kid but she has you as a mum and I know you will do everything you can to get through this, Have a look around this is an awesome site with some great ideas not from doctors but from me and other UCers that have tried and tested the meds and know the effects. Have a look at the post about EVOO its about taking 3 tablespoons of olive oil before each main meal of the day Graham has done some extensive research and he is symptom free now I believe for 2 years now. Check out his post. I find for me it’s all about trying and testing different things some obvious ones for me to avoid and I think most people are chocolate and to a lesser degree dairy, fried food doesnt help if there is a lot of it. Coffee as well is a no no and watch out for all those packaged foods that have the dreaded sucrose in it that is definitely a big one for me. It can be different for others but I have tried to list the ones I know of and that I know others suffer with also. Dont be afraid to question the doctors just because they are doctors doesn’t mean you cant question or disagree with them. I am not the easiest of patients but I don’t want to be a patient like all of us here so my anger gets directed at the UC and any apathetic medical staff I encounter. Hang in there you are not in this alone we are all suffering also stress is in my opinion (also my doctors) one of the biggest factors to UC.

    Hope this helps a little keep coming back and asking that’s what this site was set up for even if we don’t know the answers we will keep you company on the way with good suggestions.

    Take care

    Hope and praying for your daughter.

  2. Berta, my son (Celiac and UC) was diagnosed back in May 2012 while a sophomore at the university. I know what you are going through especially when dealing with GIs.
    I fought with 4 of them and finally ended up taking my son’s health on my own hands.
    I put him on remission in 10 months an today he has been doing very well.
    I don’t trust not care for conventional medicine. Doctors don’t care about curing but they care for the $ sign. That is the bottom line.
    If you need me to share my personal story…that is fine with me. Write me and I will share it since it might help you some….
    Warm regards,

  3. So sorry your daughter is having to deal with this at such a young age! I’m not a parent, but would think it would be critical for her to meet other kids with this disease and realize she is not alone. I started going to my local CCFA monthly support group meetings, and it’s helped me to talk to others with the same symptoms and struggles. You can call to speak with a CCFA info. specialist by telephone at 888-MY-GUT-PAIN (888-694-8872), but here’s the link to the page about support groups, etc.. I’m not sure what’s up with their search map though, because I searched for the group I attend and it didn’t show up, so there may be one closer to you than it shows. Get support for her, and for you, so you can face this with as much knowledge as possible. http://www.ccfa.org/living-with-crohns-colitis/find-a-support-group/

  4. I know how you feel .My daughter now 13 was diagnosed UC when she was 8 yrs old. She has had a hard time dealing with this .Always having pain and having to get to a bathroom right away. She is now trying to get over a c-diff infection that she got over a month ago .They told me that because she has UC that the c-diff infection is easy to get without taking any antibiotics beforehand . She also had a c-diff infection when she was 8 and after she wasn’t getting any better they checked to see if she had UC which she did . Its hard having a child sick with something that most people don’t understand. She does take medicines daily for UC but she still has a lot of problems . I worry for her all the time .

  5. Thanks for sharing your stories. Shirley mine daughter too came down with CDiff . I thought because she was getting off perdisone it was coming back but it was CDiff. They put on an antibiotic and doing better. I feel need to bring Clorox wipes everywhere I go now. She is also taking a viatmin D to help with her immune system. I think it’s the edema she takes every night that getting the best of her. No more sleep over. She wanted me to pinky promise she won’t never have to get a bag.

  6. Hi Berta,
    Sorry about your daughter and that your family is going through this.
    I have 3 very young kids and I hope to god none of them get this condition, but if they did I would try what I describe below with them in a heartbeat.
    I’ve had UC since Jan 2007. I’ve had numerous flares, scopes and tried many different things to try to help myself.

    in Aug of last year (2013) I entered a pretty bad flare. Docs were finally pushing me towards biologics and hefty immuno suppressants. I had controlled my UC pretty well for over a year by following the Paleo diet with minimal meds so I wasn’t happy to hear this.

    This flare started to hang on, longer and tougher than any of my previous flares. I went to a rheumatologist because I was having severe joint pain and eye and skin symptoms as well. I was one big flared up mess.

    I did more research than ever, which included finding this site. I finally decided to try a couple of more “drastic” things to try to help myself. The funny thing is, when you stop and look at it, the things I tired aren’t drastic at all when you compare them to the meds and treatments your standard GI doc will tell you about.

    When it comes down to it, UC is an autoimmune issue. That’s why so many times you see symptoms showing up outside the colon (skin, eyes, joints). This finally really hit home with this flare.

    So the things I tried were the following: Fecal Transplants and Helminths, human whip worm to be specific. For the fecal transplants, I found a healthy donor (my wife) and gave myself a series of poop smoothie enemas. Within 2 weeks I was in remission. In December I started dosing with whip worm. These are things I had to try myself. I found a new GI doc, one that would support me, even though she could not directly help me with these treatments b/c they are not mainstream / FDA approved practices.

    I’m now in the best remission I’ve ever experienced and nearly med free.

    Why did I choose these treatments? Because both target immune regulation and balance. The fecal transplants are nothing but a super probiotic infusion. Probiotics ingested orally don’t even come close. For the helminths, numerous studies show our relationship with parasites to be symbiotic and that they help to calm and regulate over-active immune systems.

    Gross? Weird? It’s just a matter of perspective. I’d rather try these things than take a class 1 carcinogen (azathioprine for example) long term to calm my immune system and put other parts of my health at risk.

    The fecal transplants are well within reach as something to try for your daugher. They have an exceptionally high cure rate for CDiff. One mom blogs about doing them regularly for her daughter’s UC.

    Anyway, it’s still relatively early on for me with these treatments and I don’t know for sure which treatment is helping me the most so I can’t speak conclusively. But I just had a Flex Sig and things looked so good, down to the tissue biopsy level, compared to last fall that the doc said she would not guess I had UC if she didn’t know my history. One or both of these treatments is working, and working very very well in my opinion.

    If you are at all interested, let me know and I would be happy to share more with you in greater detail including further reading etc.

    Hang in there. This condition can be very challenging. I hope your daughter feels better soon. My thoughts are very much with you and your family.

  7. Hi Jon- I was curious how you’ve been managing since your treatments. My daughter is 16 with UC. They want to start her on humira , and I’m not sure what to do. We are not far from the mayo clinic, and would like to look into FMT for her. Just curious what your thoughts are. Thank you!

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