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16 Year Old Son Running Out of Options

Introduction:

I am a father of a son who is 16. He was diagnosed when he was 6. Also has type 1 diabetes which makes it a little bit of a juggling act for diet.

First I would like to thank EVERYONE that has posted on this site. For the last week I may have read every article on here whether I felt it was pertinent or not to my own son’s issues. The honest reviews, your own trials and tribulations have led me to believe that somehow I can find the right answer!!!

A little background of my son’s own case. He was diagnosed 10 years ago when he was 6. The normal, diarrhea, bleeding and MANY bm’s. He was treated first with Prednisone, unfortunately that had to stop when he was diagnosed shortly after as a Type 1 diabetic….

He was put on Asacol that really kept his condition under control for quite some time (5 years). He then went into a mini flare that we believed was caused because he secretly stopped taking his pills. We got that under control by upping the Asacol (and making sure he took it!!).

Another flare about a year ago (again we feel from not taking medication) and got that under control quickly. Our Gastro Dr. felt he was getting at the age to move away from him (he is a pediatric gastro) and get an “adult” Dr. We found one we liked who felt the Asacol was not doing all it should and then put him on Lialda.

He was symptom free for about a year and then went into a flare. Changed medication to Uceris which caused some major issues (increased heart rate etc..) He became very lethargic and such so we knew something wasn’t right. Dr. said lets put him into hospital for some IV as he felt he may be dehydrated.

Well his hemoglobin count was down under 4!!!!! 8 days in the hospital, transfusions, IV steroids and we were able to go home. Symptoms were better but still in the flare.

He has been on Prednisone for last 2 months and Dr wants him to go on Remicade. I refuse to put him on any of these “horrible” medications because as a parent I couldn’t live with the fact of the side effects he could get.

Dr says it is either medication or surgery….Right now he has about 4 bm’s per day, 50-50 on formed bm’s, some bleeding but very little. His last scope (6 months ago) listed him as mild UC. Based on all of the information I have gathered I see no reason why surgery is even entertained!!!

Tomorrow we go to a different Dr who I hope can shed some light on other alternatives. Right now I believe (unless the new Dr comes up with something) we are going to try the probiotic route. All the reviews in that section of this site seem very positive. It sure is a better first option then what I have recently been told.

As we have gone through his Diabetes illness for about the same amount of time as UC we see constant “new” information and options for Diabetics. I believe the same will keep happening with UC. I want to delay, delay and delay going either the bad chemical route or surgery.

Thank you Adam for all you do on this site. By having access to all of these people and information it has led me to at least feel I can gain control of my son’s illness.

written by Frank

submitted in the parents venting area





7 Responses to “16 Year Old Son Running Out of Options”

  1. shellyDecember 9, 2013 at 8:10 am #

    Check out the scd diet/gaps/paleo diets. They should with some tweaking base on your son’s needs, be good for the type 1 and the UC (some people respond to them and others don’t).
    My daughter was diagnosed at 3 and is now only 7 and she never did respond to the ASA medications and to very little else. She’s now on a double maximum dose of remicade a decision we felt forced into after exhausting every diet/FMT/chinese meds/every probiotic and supplement under the sun. And it’s not working either unfortunately. Your son’s symptoms seem very manageable and with mild disease surgery does sound a bit mad. But since he’s 16 I would allow and actually encourage him to look at the various meds and diets (6mp, remi) and alternative treatments and see which one he wants to pursue. The side effects of meds are scary but honesty they’re very rare. Having said that, he has a LOT of alternative stuff to try. Good luck.

  2. Ryan H.December 9, 2013 at 10:45 am #

    Frank,

    Sorry about this struggle. I strongly suggest the SCDiet . It totally works if you are hardcore about it. You can help your son heal with this diet. Try it for 4-6 months and if it doesn’t work then at least you know you tried you best.

    It worked for me. Good luck!

  3. Kathy PrietoDecember 9, 2013 at 4:13 pm #

    As the others have said, the SCD is great particularly since your son is A diabetic. For my 9 year old daughter( not UC but weird gut things- her dad has UC) VSL#3 DS(this is prescription strength- costly but worth it for us) has been good for her- right now she has something going on so I am giving her 2 of these a day- I usually just use 1 unless I suspect sonething not right.I have also been giving her bone broth each morning before school(easy to make- just google how to make bone broth)- the gelatin is very healing with many minerals….UC folks don’t get enough of. and I literally scoop softened coconut oil in her- about 1tabkespoon a day(needs to be warm to liquids- can also mix it with puréed
    avacado- which will give ur son some healthy fats. When not flaring, basic fiber supplement at night with plenty of water firms his stools- but he hates taking meds, supplements…. So he often forgets his fiber at night. Hope this helps.

  4. EdDecember 9, 2013 at 4:13 pm #

    Hi

    I’m not a dr but reading your sons symptoms, he doesnt sound bad enough to warrant biologic drugs. I don’t understand why the doc hasn’t tried immunosuppressants first like azathiaprine or methotrexte. I’d get a second opinion!

    All the best

  5. bevDecember 10, 2013 at 6:47 am #

    How prudent of you to ‘delay delay delay’, for yes, you never know what may be coming down the pipes in the future to hopefully cure this awful condition. That has also been my approach when told by a doctor that for me, with severe pancolitis, colon removal was probably inevitable!

    That was about five years ago now. I am the person who stumbled onto my ‘ci=ure’ with a good probiotic and L-glutamine. They have been game and life changers for me. I swear by them.

    You should try the probiotic route. Why not, right? There is also fecal transplants, which, I believe, are going to be ‘streamlined’ in the future, so that they aren’t so ‘gross’. Both are all natural…no bad side effects. I refuse to take any medications for UC at all any more. None of them work very long, if at all, and they are dangerous. I would have my colon removed before I take another UC drug. That’s just me….been there done that.

    Bev

  6. kDecember 12, 2013 at 7:16 pm #

    Hello Frank and Son,
    I can only begin to imagine the courage it would take to be 16 and coping with both diabetes and uc.
    I hope that somehow you achieve remission and can then enjoy a more normal life free of uc and its problems.
    But meanwhile, I hope you can get to know some people who have had an ileostomy or a j pouch, so you can understand the plusses and minuses of such surgery. Then if sometime down the road you still have serious uc problems and are ready to say, “Enough is enough with uc” you will understand possible next step.
    I had emergency ileostomy surgery one winter afternoon nearly 40 years ago when my colon perforated. Life since hasn’t been too bad; you get used to the ileostomy and life goes on. And my life has no pain, no urgency, no bleeding, no meds, no dietary restrictions, no fear of cancer, no fear of psc, all things it is nice not to have to worry about.

  7. Mike from Ohio
    Mike HDecember 16, 2013 at 6:29 pm #

    I am with you all the way on the Remicade that stuff made me worse and the side affects were not healthy at all. Knowing what I know now and the years of suffering I went through I would not hesitate to consider the J Pouch surgery. I fought this disease since I was 20 and it finally came to the point that surgery was my best option. I tried everything except the fecal transplant and still wouldn’t. So I know where you are with this. I had the three step J Pouch surgery with the final reversal on 9/11 of this year and I feel better than I have in years. The pouch works great and I have already forgot that I have it and think nothing of it most of the time. The time I hade a temp ileostomy was no fun but the results now are great. I am UC free and on no medication at all. If you choose the right surgeon the J Pouch is indeed a great thing. There is no need to suffer for years. As yong as he is he will heal fast and get this past him.

    Mike

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