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Posted 4/4/2008 1:29 PM (GMT 0)
I'm totally freaking out (on my son's behalf). He's 6'3" and has lost 20 lbs in the last 2 weeks. He's below 150 and has been flaring big time for over a week.  He has had labs run twice (two different places b/c their idiots and can't talk to each other), but everything comes back normal.  He's on 100mg of 6MP, 40mg of Prednisone, and had another Remicade infusion (highest dose) on Tuesday morning.  We saw minimal improvement (bathroom 10 times daily instead of every hour), but he still can't keep any food down, says he has a metal taste in his mouth, and really bad heart burn.  I just don't know what to do anymore. I don't want him to have to have surgery. It's so scary and permanent, but he can't go on like this and we are supposed to send the acceptance letter for college by May 1st.  ARRGGHHH!  Humira scares me - not the actual drug, but the administering of it - plus is that just going to work for a few times like Remicade and then stop.  Any advice or words of encouragement would be great.  He's so young and I know it's his decision, but I really don't think he wants to make it, he looks to us for the answers (at least on this).

Thanks for listening (AGAIN)!

Posted 4/4/2008 1:38 PM (GMT 0)
My heart goes out to you as the parent of a sick child. I cannot imagine how stressful this must be for you to watch your child suffer.

As a person who has had severe UC and has had surgery I can tell you that surgery is not the worse thing that can happen. I had no quality of life when I was ill and drugs didn't work. My option was to stay sick and stay on prednisone for life, risk long term side effects of the drugs, and due to chronic inflammation, risk the 100 hundred-fold increase on being diagnosed with colon cancer.

Ultimately your son will be the one to decide his future. In the 7 years since surgery I have only met one surgical person who regretted having surgery. Most of us are grateful to have our lives back. I am grateful that I can follow my passion of long distance thru-hiking and backpacking without worrying about where the bathrooms are and will I feel well enough to commit to travel, to be able to work, and to leave my home without knowing where every bathroom in town is.

The decision to have surgery was the most difficult decision I have made to date. Yet I have never regretted it.

Sue
Posted 4/4/2008 1:41 PM (GMT 0)
Wow, I understand how you feel. If I were him, being so young, I would look into surgery. I think I would for the simple reason that at 18, he has his whole life ahead of him, why suffer thru it all when he don't need to. If I ever get as bad as some of the people here, I will have surgery just so I can live a normal life. This is just my opinion on what I would do. You are right it will be up to him, but at 18, sometimes kids can't see the big picture and see life down the road. Good luck
Posted 4/4/2008 2:25 PM (GMT 0)
Time for a frank talk with the doctor about your concerns!

A few things: Prednisone can cause horrific heartburn! I would suggest he takes an OTC H2 blocker or PPI to help counteract it. Zantac 150 has been doing well for me this round. Pred also causes that icky metallic taste in the mouth. I always try to swallow the tablets quickly and eat something to get rid of the taste. I stunned the pharmacist and asked for the 5mg tabs instead of the 10mg ones - I find them easier to swallow and taste them less. Pharmacist was like "but then you have to take twice as many". Duh - but it works better for me :)

Surgery seems very scary - at least it did for me - until I learned more about it. During a major flare in 2005 (I think) I started reading about surgeries and it brought a lot of peace to my mind. The knowledge was definitely power! It's all about what you know.
Posted 4/4/2008 3:05 PM (GMT 0)
Dear Lou 101,

        Your notes touched my heart......your "son" should not have to suffer and not have

any quality to his life.  I am 63 and was diagnosed with UC in 2005 and after many attempts

to reach remission, I finally called Boston Medical, got an appt. for next AM and was so

suprised at how professional & caring "the Team" was I had a Nurse Practioner, UC DR, who

was wonderful and a specialist that checked my bottom area and gently cleaned me up and

applied a Clear Moisture Barrier Ointment and I was given new scripts for "COLOZAL" and

the Foam for the rectum before bed to alleviate swelling and inflamation.  They have me set

up for a "colonoscopy" this Weds. as my Blood Work came back with high levels with my

Sedrate Level. This indicates alot of activity and the doctor wants to check this out.  I

am so glad I went to Boston Medical as they have a New Program especially for UC/Chrohns

Disease.  The one thing that was mentioned to me was "surgery" if everything fails & I

was so ill I asked about the New surgery being performed.  They remove the Colon and

make a new "Anus" so there is no bag to contend with...thank God for Science and Great

Doctors.  I hope your son gets the help he needs and hopefully that will make your life

alot easier, no one wants to see their child suffer and be so hopeless to change the problem.  God Bless and your in my thoughts and prayers

My Best to you.

Lady in Pink

Posted 4/4/2008 3:25 PM (GMT 0)
Thanks for the support and information.  I told my son about the Prednisone causing the heartburn and metal taste and I think that made him feel better.  He's always afraid that something else is happening.  I feel so bad for him. He just wants to feel good again.  One of his doctors did call back and said that his blood work did indicated that he was dehydrated, so he's going in today at 1:15 for an appointment.  Hopefully, they can do something to get him back on his feet and get some meat on his body. 

Posted 4/4/2008 4:18 PM (GMT 0)
Dear Lew1201,
I have to write because I, too, have a son who is 16 years old and has been flaring for 2.5 years in some way. Typically his way is bleeding. We have tried a host of drugs as well and there are days when I just want him have the surgery. Unfortunately in my son's case he has indeterminate colitis so he may have Crohns...don't know for sure.

Anyway I want you to know everyday I feel the agony of watching my child suffer and have no good options. I am sorry I cannot not offer anymore than emotional support and let you know that you are not alone.

~Sally
Mom of 16 year old son, on bunch of supplements, tried all meds, starting with new physician
Posted 4/6/2008 10:36 PM (GMT 0)
It seems like there is more than enough anxiety to go around! Lots of us seem to feel that stress makes symptoms far worse and may even be triggers for flares. So it might be a good idea to get some anti-anxiety meds.

Being 18 and thinking about college, girls, graduation, girls, cars, and girls is a lot for any kid, let alone a kid with UC. Even though he is 18, he is still sorta at that age where he looks to you for some direction. Independence is just around the corner and that is pretty scary too. So best to make sure that you get all the info you can get your paws on.

I think that a nice long talk with your gi is in order. You can figure out what ALL your options are, maybe again, even get a prescription for some anti-anxiety meds. Don't just talk about traditional treatment options. Ask about various support groups, nutrition and holistic options, etc. Start thinking of some questions outside of the traditional medical box. Once you guys start getting some real options, you'll really start to feel better...BOTH OF YOU. Knowledge is power. You can't really control UC, but you can better control how you deal with UC.
Posted 4/6/2008 10:59 PM (GMT 0)
Enough is enough when you can no longer live with your disease and it is affecting your quality of life. When you run out of treatment options and can not think of living your life for one more second with this disease. I understand because I was there just a couple of months ago. The worst thoughts went through my head: guilt, misery, unhappiness, feeling of being defective, worthless.....all on top of the physical turmoil the disease was doint to my body. It HAS to be his choice.....you don't want him to resent you later for making that decision for him or for nudging him in one direction or another. My husband was amazing at this, did research for us and presented the information unbiased to me. A good long talk with my GI helped as well. We have a cousin that went through the surgery too, and talking to him helped. Talk to everyone you can, get all the information you can, and I wish you the very best of luck with your situation. My heart and prayers go out to you and your son.
Posted 4/6/2008 11:56 PM (GMT 0)
Just an FYI if it gets to the point of your son needing surgery, I ran the Miami half-marathon in January and there were several people on the team also running who had their colon's removed. In both cases they were happy, healthy and EXTREMELY glad they'd had the surgery, saying there's no way they were in any condition to do something that adventurous when they still had UC. Sometimes surgery can be liberating, even though the recovery is really tough. I still have my colon, but if I flare badly again I"ll consider getting it taken out mostly because of seeing how great those peopel were doing. Just something to keep in mind.
Posted 4/7/2008 12:39 AM (GMT 0)
I honestly believe that if the Remicade ever stops working for me, I'll probably have surgery. Enough is enough whenever you decide it is.
Posted 4/7/2008 4:12 AM (GMT 0)

Lew, I understand what you and your son are going through.  My daughter was diagnosed a year and a half ago and is in her 3rd flare.  The first time, asacol, rowasa, hydrocortisone enemas, and prednisone got her into remission (after missing 9 weeks of school).  Almost exactly one year later, she flared again.  This time the prednisone didn't seem to work as well. It took a higher dose for a longer time to kick it in.  At the same time, she started
6-mp. about 3 weeks ago, she started flaring again. All her bloodwork comes back OK (in terms of 6-mp) so the doctor feels that it is not helping her flare. She is back on prednisone. Tuesday she goes for her first Remicade treatment.  The doctor was concerned about some dysplasia they saw in her colonoscopies but the pathologist feels it is not something that needs to be addressed immediately.  HerGI did start talking about surgery (instead of Remicade if the colonoscopy had shown signs of dysplasia to be worried about).  When my daughter is in a flare like she is now (no sign of remission), she almost looks forward to surgery.  She knows it is permanent, knows it is a long recovery, knows it may affect the end of her junior year, senior year, and/or the first year of college.  It is scary.  As a parent, I don't want to make the decision for her alone. I am not the one who will have to live with it forever. We do plan on seeing a surgeon (hopefully if she gets into remission soon) to create a rapport with him and to get as many answers as possible while we are not under any intense pressure to make a decision. 

It hurts me to see her in such pain. When she is in remission, her life seems "normal". I hate seeing her miss so much of what should be some fun times (extracurricular activities). This current flare has caused her to drop out of the pit for the school musical, she probably won't be in a music competition next week (she is kind of happy about that), she misses spending time with her friends. But surgery is no quick fix either.

It is a hard decision to make.

Posted 4/7/2008 6:01 PM (GMT 0)
Longtime lurker, first time poster, just had to reply, as your post touched me. I too have never yet been in remission since diagnosis, and have gotten increasingly desperate re: considering surgery as I have failed most of the meds that I have tried. While Remicade initially worked for me, I developed a severe reaction after the 3rd infusion, and was stopped.

I am now on Humira, and while it took 4 weeks to kick in, it has been nearly miraculous for me, aside from the fact that I am still steroid-dependent and having trouble getting off prednisone completely. The administration takes some getting used to, as the shots are painful, but with time it has gotten easier. My husband administers them for me, as I am too squeamish to do it myself. The pharmacy delivers them to my door in a cooler, and there is no hassle involved. I am fortunate that my insurance has been covering the injections, with just a small copay on my part. It is a much simpler process than the Remicade, so just wanted to let you know that while it is always scary to graduate up to a newer medication, Humira has been suprisingly gentle for me, with no side effects other than some fatigue for a day or so following the shot, and some bruising at the injection site.

Best of luck to you and your son!
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