I’m Frustrated and Scared – My Son Has UC



My son’s worst flare up since his diagnosis in October of 2012. We live in Delaware and I am very happy with our doctors attention to him, although right now nothing seems to be working.

My 16 Year Old’s Ulcerative Colitis

Hi. my son is 16 and has UC. He was first diagnosed in October 2012 and we are in the worst flare since originally diagnosed. He has had constant diarrhea with blood for three weeks now. Our doctor has had him on Asacol ( which they are not making anymore from my understanding) so then we switched to Asipro, with the use of Cortifoam also this calmed things down for a few days.

Because of the severity and the 12 pound weight loss in just 7 days she put him back on the steroid (prednisone) just 3 days ago. Still no help.. he is on the couch now… asleep, pale and weak.

We will be starting the diet tomorrow and hope that it can help in some way…

Are there any other parents out there who just feel helpless?

It is so frustrating to not be able to do anything because we don’t know how or what causes this horrible disease. I have an extremely strong willed son but I see him giving up all hope because he is so used to mom or the doct or being able to fix things. Would just be interested in what any other parents have to say and at what point do you start to feel better about this condition? right now I know that we would both be happy just to look in the toilet and see no blood… I know that would be just the best feeling but its been 3-4 weeks…. is that too long? We have gone for the poop sample which came back ok and the blood test on this past Thursday which our doctor didn’t seem too concerned about. His hemoglobin was 10.6 which was down from 12.6 in March. I can always tell when his blood levels are low because that is when the weakness and paleness sets in.. Any help or encouragement for my son and I would be much appreciated at this time…

written by Paula

submitted in the friends and family of UC’ers section


8 Responses to I’m Frustrated and Scared – My Son Has UC

  1. Brittany Collard June 15, 2014 at 8:23 pm #

    Hello,
    I am so sorry to hear about your sons struggle. It can be very hard for parents to watch their child suffer and not know what to do. I had colitis for 12 years, diagnosed when I was 10, had surgery at 22 when nothing else had worked. I find when growing and developing my body changed so much and things would work well and then stop. When I was 17 and the above drugs you mentioned stopped work I was put on
    remicade. It worked wonders, stopping flares within days. I’m not sure if this has been offered to you, but it is worth researching. If all stops working you may consider surgery. It gave me my life back and I am now healthier than I have been my entire life. It is a big adjustment but the best option if all other avenues have failed to live a normal life. Please feel free to add me on Facebook (Brittany collard), from Ontario Canada and would be happy to offer and support or answer any questions (I have been on many different meds and can offer my experiences) and can connect you with my mom if you need support or advice of another mother who had a child with colitis.

  2. Brookie G
    Brooke June 15, 2014 at 8:23 pm #

    Hi Paula, I’m sorry to hear about your son’s flare ups and UC diagnosis. I have UC and still have my colon. My brother also had UC but had his entire colon removed 17 years ago when he was 15, as the docs couldn’t control his bleeding. (He’s 32 now). His removal of his colon was the best thing that could have happened to him. It sucked at the time but he soon gained his strength back and has been a healthy individual ever since. Just wanted to write and say that if gets so bad that he needs to have it taken out, it may be a “good” thing. I’ve suffered from UC for many years and am hanging on to my colon until I’m done having kids and then I’ll be getting mine out. The drugs to treat UC (mostly prednisone) have ruined other parts/systems of my body over the years and sometimes I wish I had my colon out years ago….just wanted to share. I feel for your son – it really sucks to have UC during the middle school/high school years. Best Regards~Brooke

  3. Gina June 15, 2014 at 8:54 pm #

    Hi Paula,
    My heart goes out to your son. It must be incredibly difficult on all of you.

    I was diagnosed in 2010. It was a couple of years of trial and error with meds and diet. One thing I found that helps stabilize me when I’m in flare free fall is to go on a clear liquid diet for a couple days to help give my colon a break. Coconut water, vegetable broth (tastier than chicken, in my opinion), jello. Then I work up to foods that are soft and easily digestable. Definitely look into the Specific Carbohydrate Diet.

    As far as meds, I was initially put on Apriso. It helped for a while. I had an insurance change that required me to go on Asacol, and that was much less effective and made me unstable and susceptible to flares. My doc had called my insurance to override, and I’ve been on the Apriso ever since. I was still flaring every so often, and I had a particularly nasty one in 2012. It required 2 rounds of prednisone, which I was very unhappy about. (I LOATHE it!) My doctor presented me with 2 choices: Azathioprine (or 6 MP), to be taken in addition to the Apriso, or biologic infusion. We decided to try the Azathioprine and it’s been a godsend. No flares since 2012 for me, though I am still careful with my diet. I do have to get my blood checked quarterly because the Azathioprine can be a bit dangerous, but at a low therapeutic level, it can make all the difference. Definitely stay positive and discuss all treatment options with your son’s doctor, as well as natural options to help keep the body as healthy as possible. Give your son a hug for me! :)

  4. Chrissie Hastings June 15, 2014 at 10:38 pm #

    Dear Paula
    I know what your going through and how you are feeling at the moment, I think as a parent, having to watch and care for a child with uc can be a very lonely and anxious place to be in. Our lovely daughter was diagnosed with uc when she was 12. She was very very sick at the time having to be hospitalized and given blood transfusions and steroid through a cannula. It was a 12 month recovery. It’s taken me all these years to get my head around uc so that I could understand and help recovery after a flare. So abut 12 months ago we started the SCD diet and followed the recipe books religiously. We saw a difference with in a few weeks. The gas and bloating settled almost immediately, our girl was on 50 ml of pred at the time and that can take a little time to settle the bleeding. The hard thing is as a mum is that if we get stressed and anxious about it then so do our kids. We’ve found that if our girl gets stressed so dose the uc. We just kept going back to her doctor, she had an iron infusion and new drugs until slowly she was in recovery, is now off pred, so your son will get better, it’s just a very slow recovery, I know our girl has also got old enough to understand her own triggers, EG, she dosn’t over eat and dosn’t eat in the mornings. She drinks a lot of peppermint tea, keeps her stress levels down, even through university exams, so life does get better,,, our daughter is 21 now and has been in remission for over 12 months. We are still vigilant constantly as we know how fast she can become I’ll. I found Adams UC site has been great as it put UC in plain English for me to understand how bad bacteria works through diet. I hope this helps you a little through this hard time and hang in there things will get better. Hot water bottles are great to sit on too, I know our girl has become a tough cookie through having UC, she’s very mature for her age and sees things very differently than other girls her age. So there are positives as well. I will be thinking about you and hoping that things get better soon, but if your worried at any time see your doctor or go to the A and E, and google google google. Any info is a bonus,
    Love to all chrissie

  5. barb June 16, 2014 at 7:20 am #

    You could try putting him on a probiotic . I take one
    every morning and has really helped. I am also doing remicade treatments and is working as well. You might want to ask your son’s doctor about that.

    Barb

  6. Erica Menard June 16, 2014 at 9:59 am #

    Paula, my heart goes out to you. My daughter was diagnosed at age 9 and is now 15. After a flare last fall that wasn’t helped by Asacol, Uceris or Prednisone, she was accepted into a clinical trial of a medication called Simponi that has been approved to treat rheumatoid arthritis in adults. It’s in a class of meds known as a “biologics” and works in a way that is similar to Remicade (but it’s administered once a month, at home, via injection). She has thankfully responded EXTREMELY well to the Simponi, and our doctor says that people who have a good initial reaction to these types of meds tend to continue to do well on them.

    I have done a great deal of research into both specific carbohydrate and paleo diets. Unfortunately, the SCD didn’t cause my daughter’s UC to go into remission. I pray that one day her condition will be controllable via diet (and am taking her to a naturopath to be tested for food sensitivities).

    One thing that has made a huge difference has been finding a pediatric GI doctor who my daughter and I feel safe with, and who is a highly-respected researcher who proactively monitors my child’s condition (and answers all of my never-ending questions about diet, other medications, probiotics, antidepressants, etc. etc.). Finding our current doctor has made all of the difference in the world.

  7. mary June 16, 2014 at 6:08 pm #

    I have a new doctor and he prescribed fidaxomicin but it costs $3000 and with my insurance I will have to pay $1000. He then prescribed vancomycin which is still expensive but my co pay was on $36. He said there is a good chance that this will work.

  8. Uma June 23, 2014 at 2:26 pm #

    Hi Paula,
    I can understand as I was in the same boat 5 years ago. My son was 17 when he was diagnosed with UC. now he is 22 and has been in and out of flares. Right now he has one (since march). I read on line that cabbage juice helps. We tried juicing 4 leaves of Napa cabbage with 2 carrots and an apple and in the past week his symptoms have almost disappeared. The frequency is down to 2-3 and almost no blood. Not sure how long this will last but for now keeping our fingers crossed. you may want to try it. good luck!!

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No matter what, colitis flares don't last forever, don't forget it:)