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I am at my wits end! I just don't know what to do. My son was diagnosed with crohn's in 2007 when he was 10yrs. old, he was on pentasa for over 2 years with no results, we did remacade, then humira, then remacade again, on and off steroids, on more than off and of course with in a couple of weeks after he is off the steroids he gets worse again. He is on methotrexate now, has been for 2 months, not working, he hasn't been so bad that he needs blood transfusions or has been in so much pain he can't function, he basically has allot of watery loose stools with  little blood here and there, besides his 3 serious flare ups last year, which he was hospitalized for 8-10 days each time, he had a feeding tube put in his stomach last fall which has really helped with his weight, but the doctor seems to think he will only get better if we remove his colon and insert colostomy bag, his disease in in his colon only right now, he went from mild crohn's to severe acording to the doctor from last spring to late last summer. I don't know what to do should I take this big of step? what will happen later? will the disease affect him elsewhere? Has anyone out there been in my shoes? What advice does anyone have for me? I need some suggestions A.S.A.P! I just want my son to enjoy what little childhood he has left, he starts high school next year, we all know that is hard enough with out having serious health issues, he wants to do what everyone else does with out all of these problems.  What would you do?

 Reply posted for Tys Mom.

Hugs TysMom!

Why can he not have the foods mentioned in Eating Right for a Bad Gut?  Is it this "rest" time on the tubal feeding? 

It takes time to heal.  I am starting something different in a week (waiting for my orthomolecular doc to get it in).  I am going to "fix" my immune system.  The stuff is similar to how ldn works. 

I am a believer in total life healing.  I hope you are taking care of you.  Ty will see you taking care of you.  It will make a difference.  I really wish I had more to offer.

I will keep you and yours in my thoughts and prayers.

Breezy

 Reply posted for Tys Mom.

To aswer everyones questions, my son is now on all tubal feeds, he is trying remicade again, he is on adek multi vitamins, calcium, vitamin C, Tumeric herbal suppliment, vitamin E, 2 kinds of probiotics and omega 3. Since he has been on the tubal feeds, nothing orally, he has been only having 5-6 bowel movements a day, verses 20 a day. at first we weren't giving him his vitamins, probiotics and suppliments when they started him on all tubal feeds, because the doctor said water only orally, but he felt he needed them as did I and since he started back up on them (with the doctors aproval) he has had a little improvement, it has only been a couple of weeks back on his suppliments, so hopefully he will get better with time. I have always felt nutrition was the most important key to dealing with this disease and control and I was told that if I hadn't always had my son on many suppliments and vitamins like I have his blood counts wouldn't be as good as they are and his bone scans are normal as a result, they were amazed how his bones were with all that he been through.

I will look into the sc diet and try that when he can eat again, I hope it works he is very, very picky. I have had to use my juicer in the past make him drink shots of pure fresh juice just get some natural fiber and nutrion in him. Thank you everyone for all of your input and support. take care

                                                                                    Ty's Mom

 Reply posted for breezy.

 we have the book eating right for a bad gut and allot of the foods in there recipes, in fact most of them he can not have and he has been on the best probiotics since he was diagnosed and has not had any gluten at all for 8 months. Now what? He is on all tubal feeds as well. Any other sugestions?

 Reply posted for alanschachter.

I am going to throw in my 2 cents worth- Listen to lca and alan.... Read Eating Right for a Bad Gut, Breaking the Vicious Cycle, and Life without Bread.  Buy a good probiotic.  I lived with a temporary colostomy for 7 months.  There are so many on here with proof that diet matters.  I am one of them.  Let me know if I can help in any way.

Breezy

 Reply posted for Tys Mom.

I can truly feel your pain in trying to make this decision.  We are at the same point with my daughter and she is 17.  I lie awake at night thinkinng about every possible thing that could be a positive to all of this and, of course, think about everything that could go wrong down the road.  She was diagnosed about 3 years ago and has never gone into remission.  Like you, I've done so much research about every drug and natural way to treat this disease.  I'm scared to death to have her colon removed.  All I can think of is what if there is some type of complication down the road and the J Pouch doesn't work.....she's going to have to live with a permanent bag.  My daughter, on the other hand, is exhausted from all the efforts. 

Once the doctor brought up surgery at our last visit, I think that my daughter just finally saw hope and she's ready to do it.  I'm scared that she isn't fully aware of the whole process and the difficulties that it may bring.  Hopefully not, but I want her to be prepared.  I keep holding on to the hope that the next medicine is going to be the one to help her...there just has to be an answer.  But, now I feel like I would be dragging my daughter through more days of misery in that hope.  She is getting ready to graduate and go off to college and wants a new beginning. 

I can only tell you that I am so torn, like you.  I have been trying to find resources where I can get more information on  life after surgery to make us both more comfortable with the decision.  If I find any resources, I would be glad to pass them on to you.  It sounds like you have been through so much more than we have and your son is so young.  My heart goes out to you.  If you need a connection to talk to through your decision process, please don't hesitate to email back. 

 Reply posted for Tys Mom.

My daughter has lived through all of this during her high school years.  She is now a senior and had colectomy surgery in August with the takedown in December.  She is doing well now and is working with a psychologist to deal with some of the anger and other emotions this has caused for her.  She has had supportive friends and school and I think the biggest issue is how this forces children to mature so much more and more quickly than their peers.  I mainly wanted to say that we had tried several other medications that I haven't seen mentioned here before we went this route.  I can check on those names for you if you like.  Also we worked diligently with our Doc to come as close to the UC diag vs. Crohn's as we could so that the surgery would be a cure.  We are pleased with the surgery decision.

 Reply posted for Tys Mom.

I really agree with Alanschachter. I have used SCD for 3 1/2 years and it has transformed my health. but I haven't tried LDN as I only need minimal medication now.
If your son does decide to try the diet it is very important to include lots of good fats (after the intro stage)  such as butter, animal fats, omega 3 rather than omega 6, and no refined oils. I use a lot more than I did on a 'normal' diet but my weight is stable  (some loss at the beginning) and I have more energy than I had for years before changing.
I made the decision to try diet because I had some bad reactions to medication and my doctor was starting to suggest that I should think about surgery. He told me diet wouldn't make any difference and now says maybe I am one of the lucky ones who  improve as they get older when I visit him once a year!!
Good luck whatever you decide but please read Breaking the Vicious Cycle and Life Without Bread before making a decision.

 Reply posted for Tys Mom.

My 9 yr old daughter just had the takedown surgery last week. She is now rid of the bag and goes to the bathroom normally. It is like a MIRACLE. She feels great and has been having normal bowel movements already.I am so glad my son and daughter in law decided to have the surgery for her. It was a terrible decision to make but it was the best thing they could have done for her.

 Reply posted for Tys Mom.

hi Ty's mom,

I was dx with UC when I was 25.  with in 3 months, I spent 43 days in the hospital and wound up having to lose my colon totally.  I was in total remission for 2.5 years until I got pregnant.  at the end of my pregnancy, I started to have symptoms and was diagnosed with CD and my small bowel closed completely.  once I had the baby, I had a little bit of a rough patch, but went back into remission again and was symptom free for 3.5 years.  I didn't get to make a choice about my surgery (if I hadn't had it, I probably would have died).  But I am ultimately glad it was done.  I think I skipped years of more severe on again, off again symptoms. 

I am once again having symptoms, but this time around they are less in my GI tract and affecting more my joints.  That's the thing with this disease, you can't predict the outcome, there's no magic ball to look into the future, there are no guarantees. 

Also, I was wondering if you've talked to him at all about what he thinks of everything?  kids can be uncannily perceptive and insightful about things!!  If he doesn't feel strongly about it either way and is otherwise managing his symptoms ok, you may choose to wait until he decides he is ready for it.  I'd say if your son is really struggling with his symptoms, and just can't take it anymore, try the surgery.  It changed my life for the better, and I have heard many others say the same. 

 Reply posted for Tys Mom.

I understand.  It sounds like you have already done all of your homework and consulted the best of the best in the field.   I was thinking you may want to see a social worker/psychologist to help with sorting through everything.   When my daughter was first diagnosed, it was really, really hard for me.  I did go to a psycologist and she helped me have a better understanding to atleast put my own mind at a ease a little (I found she helped me be more accepting).   You may want to give it a try.  It is a huge step, unfortunately one that many have had to take......some wish they did it sooner because they regained control over their own life.  Being I have not had to cross that bridge yet, I don't know exactly how you feel, I can only imagine the heartache. 

Lizzies Mom

 Reply posted for Tys Mom.

Thank you everyone for your concern and support. This is the 3rd doctor we have had for his illness, I do love this doctor he is a rare doctor who does truly care about his patients. I do trust him and I have made it very clear this surgery would be an absolute last resort. He is not pressuring us to do anything, he is just trying to make us understand. he doesn't think bypassing the colon would be very successful, would end up removing colon later anyway. I have done tons of research and found out that when the crohns disease is isolated in the colon this surgery would cure it 80% of the time. We have had an second oppion which was the same has his his and our doctor also has consulted with other G.I docs all across the country before even sugesting this. I just am not ready for such a major disission that would change my sons life in a very big way. Thanks for listening.  Tys Mom

 Reply posted for Tys Mom.

i understand what you are going thru.  my son was diagnosed with crohn's at age 7 and is now 10.  his crohn's is in his colon and he is severe, we have done about all of the meds out there and right now we are trying humira once a week.  unfortunately last october my son had to have an ilieostomy which we hope to reverse soon but at last scope in january his colon wasn't healing.  they haven't mentioned removing his colon but that is my fear,that this is our next step.  i won't lie my son is having a very hard time dealing with this illness especially now with having an ilieostomy.  not really sure what to tell you, make sure your doctors know that surgery for him is only last resort(what i made sure ours understood)  and possibly get a second opinion.  luckily we love our doctor and trust his opinion.  prays going out to you and your son, this is *** both child and parent.

praying for you,

marsha

 Reply posted for Tys Mom.

gosh, I am so sorry to hear you are going thru this!  my daughter was also diagnosed at age 10 and thankfully it was in 5th grade and not middle school...I understand your worries about high school..you want your child to be at his best.  I don't have any experience with the surgeries so I can't advise you on that but I wanted to offer some support.

 Reply posted for Tys Mom.

I can hear your frustration.  My daughter is 10 (dx @4) so we've been at it a while.  As parents all we want for our children is for them to live the most "normal" life as we can provide.  Unfortunately, your son hasn't been able to get into remission to do that.   

You asked what we would do.  There are several things to take into consideration.  Do you have total confidence in his current doc? Have you sought a 2nd opinion?  How is your son's current diet?  Are you guys following a specific diet in conjunction w/meds (no cheating)?  I personally am ultra conservative, especially when it comes to my kids and would leave no stone unturned PRIOR to having surgery. 

There has been lots of success for patients regaining their lives after struggling with this disease for years, many in hindsight wish they had the surgery sooner. My biggest worry, however, is he has CD.   Unfortunately, my daughter's was contained for years in the large intestine and has started to show signs of affecting her small intestine now.  (knock on wood, she has been stable and takes her maintenance meds religiously).

I agree w/you on the importance of gaining control before HS, being a freshman is stressful enough he needs to be feeling the best he can.  You are right, it is time for him to enjoy the remainder of his childhood.  Now, it is just the tough part in determining the best route. I wish I had a cure.

Lizzies Mom