Ulcerative Colitis Tips


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My 16 year old Son has Ulcerative Colitis

Introduction:

I’m the worring Mom of a 16 year old son, fairly new to UC and still learning what’s its all about! My son had 2nd Colonoscopy in Feb.2013. Nothing has changed since Aug.2012.

Some more details:

My son, 16, plays baseball & is accepted to 2 Pennsylvania State Police camps this summer, each 1 week long.

My Son’s Colitis Symptoms:

My son has bloody diarrhea 3-4 times every evening up to midnight! He is taking Asacol & Predinsone. I just don’t see any improvement. He had a bad sinuses infection after the 1st week on Predinsone. It looked like things were improving some until he had to take Amoxicillin for sinus infection. Then he got really bad stomach aches! We stopped the Amoxicillin 2 days early & stomach aches got better.

My 16 Year Old Son

When I noticed him in bathroom too many times a night in Aug 2012, I realized something is up.( that’s when he finally told me he had blood too) He seems to be the same since when he first started. Is this concerned a ” Bout”?? How long does it take to get over a ” Bout” ??

What kind of food do you think has a bad effect on UC?

I read allot about stress so I asked my son what is he worring about. He just isn’t a worring person but he may be now with this condition he has. Thank goodness he doesn’t have to go to bathroom all day at school, so far.. But he’s in bathroom in the evenings about 3 to 4 maybe 5 times a night. Still bloody diarrhea too. Some days he does not have as much blood as other days. I feel guilty as a Mom because I feel like I should know what to feed him or do something for him and just don’t know what to do. His colonoscopies shows mild to severe Ulcarative Colitis in the section just after the rectum and an inflammation around the opening to his Appendix. The first Doctor said he never saw anything like it.( meaning the inflammation around opening to his Appendix) My son and I and my Husband all have thought of all the food he ate that day and even the day before he got stomach aches. He has said to me , ” it doesn’t seem to be any different and doesn’t matter what I eat because it is the same and nothing changes it.” It is a worry to me and I know my son is probably worring about going to 2 Pa. State Police Camps this summer.

Does anyone know anything about the Biology medicine called Purinethol? We are to start it when his Sinus infection is cleared up.

Medications:

After 1st Colonoscopy, Dr. Prescribed 3x a day, 800 Mgs of Asacol. Found a new Doctor & he doubled the Asacol & still not responding. Doctor then added Predinsone 4 pills of 10 mg each day & my son is now tapered down to 2 1/2. Then doctor is adding a Biology medicine. We haven’t started it yet because we have to be sure he has no more Sinus infection. My son is starting a Probiotic that Practioner recommended that has all 6 strains in it. It hasn’t arrived in mail yet.

written by Terry (concerned mom)




5 Responses to My 16 year old Son has Ulcerative Colitis

  1. Bethany May 10, 2013 at 7:53 pm #

    Terry,

    I’m so sorry to hear about your son. This disease is terrible and I can only imagine what it is like to be going through it at such a young age. I was diagnosed at 22 and, although still young, I was still a little older than your son.

    His symptoms right now seem very similar to when I was on asacol. When I was first diagnosed during the my first admission they put me on asacol and my symptoms only seemed to get worse. The initial response was to up my dose even more which only succeeded in making me more miserable and putting me back in the hospital the second time. It wasn’t until I was discharged the second time and feeling better that they put me back on asacol and my symptoms returned in full force did they realize it was the source of making things worse. My GI said it can happen to a lot of people and basically its an allergy. If it doesn’t start responding and helping within the first 1-2 weeks then its not going to work. Talk to his GI about this and see about changing his meds around. I personally have never heard of purinethol but it may be med that they use on pediatrics so I can’t say much on that subject.

    The problem with this disease is that it is very different for different people. So what may work beautifully for one person may not work at all for another. It’s a matter of finding his “niche” essentially. Using a very bland diet right now while he is flaring might help to aleviate some of his pain, some people have had great success with the SCD or paleo diet. I personally love the paleo diet and don’t even really miss the grains or heavy carbs. I am also on Humira as well which has thankfully brought me into full remission after almost 6-7 months of misery. Also, you can look into good probiotics for him as well. Some people swear by them and have had great success.

    Don’t lose hope. Like I said, it’s all about finding his “niche.” Just remember that not everything will work. Each of us are built differently and our diseases are all different. I wish you both the best of luck and I truely hope he feels better soon.

    Bethany

  2. Ann May 15, 2013 at 5:57 am #

    Hi Terry, Bethany has said it very well. Everyone responds differently to medication and food. Your story touched my heart because I have two sons as well and know what being a mom is all about when it comes to the worry aspect. Fortunately they do not have colitis and they are now 22 and 25 years of age. My colitis came on at the age of 25 and so far, no surgery for me. I am 50. I have been on sulfasalzine, asacol, purenithol, canasa suppositories, and prednizone. I decided to go med free in August 2012. I came across the November 2nd, 2012 posting about evoo from Graham on this website when I was in a flare in February, 2013. It only took two weeks for the bleeding to stop once I started taking the high quality evoo along with the canasa suppositories. I am currently in total remission. Since February 14th, 2012 I had two days of slight blood when I did not take the evoo. Once I started it up again the blood went away. I no longer skip a day. Please do not feel guilty. As far as I can see you are doing everything you can to figure this thing out. He is lucky to have you and your husband “going to bat” for him. Like Bethany said, every body responds differently to meds and food. Good luck with finding a “cure” for your son.

  3. Ann May 15, 2013 at 6:02 am #

    I forgot to mention I take L-Glutamine (heals the colon), Vitamin D, and a multivitamin as well.

  4. Wendy
    Wendy May 24, 2013 at 7:53 pm #

    I never had any sign of UC at all until a situation that happened in 2009. I was ill for a really long time, very tired and nauseous. I’d say about two years of that. It got worse and worse very gradually. I was at work and (worked at a medical research facility) walked down the hall to ask for some medicine to get through my day as I wasn’t feeling well. I ended up in the emergency room and the doctors removed my appendix which was all rotted and leaking puss into my colon. My colon was black from the start of my appendix up to about five inches down the colon they said. They had me on huge amounts of (forgot the name… amoxocillin type stuff) through IV. When it got so bad all I could do was puke and cry they took my appendix out.

    After that episode, I never recovered. I was in the toilet constantly bleeding. The doctors said it was due to the stuff like amoxocillan they gave me (huge amounts of it). They didn’t want to operate to remove my colon right away because they thought it could be colon cancer and didn’t want to do two operations. They were waiting for the biopsy to come back but I became too ill which is when they removed my appendix.

    I swear I got UC from the inflamed appendix or the drugs they gave me to treat the infection from the appendix. Your mention of your story reminded me. I’m certainly no doctor and I don’t know if this information makes any difference, but it can’t hurt to mention it.

    I have never recovered from that appendix attack. My colon has never been the same.

    I hope your son and you can figure the best way to treat his symptoms. I think diet affects colitis a lot, but I think it is different for everyone. I take only natural supplements and vitamins as I’ve tried drugs and they don’t work, they just mask symptoms and cause different problems in addition to the ones you have already. Some of the more serious medications have side-affects of lupus and cancer such as remicade. I will take drugs if I must have them though. Prednisone saved me twice.

  5. Graham from England
    graham lee May 25, 2013 at 6:28 am #

    Hello Terry,

    There is a lady who posts here called Ana, she has a daughter of a similar age to your son and is an inspiration…Here is the link with some good information if you’ve not seen it…
    http://www.ihaveuc.com/making-a-change-and-need-advice-about-supplements-please-help/comment-page-1/

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