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Hello. My daughter was diagnosed with severe Crohn's/colitis on April 15 after a 3 week hospital admission. We checked in again on Mother's Day for 4 days with an active stricture.  The doctor says this is great news as the Remicade therapy will hopefully bring the inflammation down.  Yesterday we had a follow up and she is now pushing combination therapy with either methotrexate or 6mp, all in a bid to avoid surgery.

I understand avoiding surgery is important and that scarring can't be helped with meds.  But, as stated above, so much poison running through her little veins is hard to stand by and watch.  I suppose I shouldn't be viewing the drugs as poison, but I have so many reservations about destroying her health beyond the Crohn's. There are no answers to any of the questions. It's all a crap shoot.

I have entered the anger stage of this diagnosis, and as you know it's a private battle as the last thing I want to do is add more stress to my daughter's journey. I am trying to teach her that we will manage no matter what comes our way.  This is the truth, but in the meantime I want to scream and scream and scream.

I tell myself this: I am grateful this isn't a more serious condition, like cancer.  I am grateful that it can be managed. I am grateful that my daughter is gaining height and weight as she edges closer to young adulthood.  I am grateful she is able to cope with a positive attitude.

But darn it, I'm really mad.  Being reminded every few weeks that my child has a chronic condition stinks. She'll miss her last day of school because of a Remicade infusion. We'll have our fifth MRE within 3 months on the 29th, her first day of summer camp will be cut short.  I'm here to vent, and as I read through this whining tripe I want to delete it all, but it feels better to get it out.

Thanks for listening, and my thoughts are with all of you.

 Reply posted for saraspot.

My 15  yo son was diagnosed with ulcerative colitis in 2015. He experienced flare ups while taking mesalomine, Humira, Rowasa enemas -you name it we tried it.  Now he is getting Remicade every 4 weeks, in addition to weekly methotrexate injections.  He again is beginning to flare up.  I completely understand your worry about the toxic effects of treatments for this terrble diseae.

 Reply posted for marymarty.

MaryMarty,

Thank you for your prompt reply to my post.  A couple of questions:
1) How hard to insert the NG tube (I am terrified) and how traumatic was it for your son.
2) Yes, I have heard about the Fecal Transplant therapies, and that is something I want to consider.  I hear that now therapy is available at Georgetown Hospital in Washington DC that is where we live. What have you heard about this approach.

Thanks,

Beatriz

Yes did that first when he was newly diagnosed. But we did it to just get calories in him so he ate during the day and hooked up with the ng tube at night. This however did not get him into remission. But perhaps in hindsight it was because he was still eating food. He currently just gets a shot of humira every 2 weeks. Have you heard about the fecal transplants Seattle children hospital is doing ?

 Reply posted for marymarty.

Hello MaryMarty,

Thanks for posting. My 13 year old daughter was just diagnosed with Chron's so I am overwhelmed researching treatment options. I am very concerned about side effects. It is promising to hear your 17 year old son is doing well.  Which Biological drugs did you tried? did you ever tried nutritional therapy via nasogastric tube?

Thank you

 Reply posted for saraspot.

My heart breaks for  every parent who has to watch their child go through this horrible disease and all the tests, meds, and pain.  My son was diagnosed at age 16.  He is now 25.  He has been on almost every med out there, but still no remission.  He was, however, able to complete both his undergrad and graduate degrees.  He is not working  since he graduated due to his illness.  He was switched from Remicade to Humira (damn insurance company said he HAD to go on Humira - which for him was like not taking anything) and is now on Entyvio plus some oral meds.  He's been on 6mp, sterioids, etc.  Very food sensitive.  I never know what to make him.  Usually it's grilled fish or chicken, rice and carrots.  Done.  He eats peanut butter toast (on sourdough only).  I pray daily for a cure for all of our children.  
Hang in there moms and dads.  Be your child's advocate and voice.  Ask questions!  Demand answers, not platitudes.  Don't just take your doctor's word for something, but do your own research or get a second opinion.  We can't stop this, but we can fight for our children.

 Reply posted for saraspot.

I feel that everything here could have been written by me. My baby girl started bleeding when she was around 6 months old  and had frequent spit-ups and vomiting since birth (with constant diarrhea that was considered breastmilk poop initially). She was hospitalized for almost two months, got two Hickman lines placed on each side for TPN, received a number of medications and now she's been on prendisolone, sulfasalazine, lansoprazole, follic acid for 7 months and azathioprine for 1.  On a strict amino-acid based diet (as in just hypoallergenic formula).

She's had 5-6 relapses since the initial bleeding, even while on full prendisolone dosage. She's 15 months and doesn't walk yet. I'm terrified of what the medications might do to her health. I'm scared she won't be able to eat actual food (I gave her chicken soup a few days back and she started bleeding with mucus & got a nasty diaper rash). I remind myself it's not cancer too, it makes me feel "grateful" for having something less serious to deal with. I'm also hopeful about all those new "cures" just around the corner that I keep hearing about. 

But then I am reminded of the steroids and how she's been on them for way too long but they can't take her off of them yet. I remember reading those side effects about vision problems, bone issues, possible death from chickenpox (by the way, she can't have any vaccines) and I feel like putting her in a plastic bubble.

Yes, I'm here to vent too. Thanks for reading.

 Reply posted for saraspot.

I too feel very angry at times.  The grief cycle is no fun.  I wish I could just take all the pain away from my kids.  Today I went to the grocery store and walked out with orange juice and ginger ale.  Why bother shopping when no one is eating?  I began to cry.  As time goes on, I have almost run out of energy to mount a real anger response. Its not that Im not angry, but I have learned to save that energy for more useful things.  If I am full of frustration, I'm not really teaching my kids how to go about life productively.  Anger is normal, good and unavoidable but it can't be allowed to run the show. 

This disease has torn me up too.  The medical decisions are nearly impossible.  As a mother or father, you dont really know what to do most of the time.  I dont sleep well....not just because there are kids in the bed and I only have 2 inches but because my heart wont stop aching. 

 Reply posted for mama2acdwarrior.

several mothers of cd children have been kind enough to reach out this pass year as my son has gone down the terrible treatment, my heart broken for you too and every mother who has to watch their child suffer with this disease. i will pass on a few of their words of comfort and wisdom; all four mothers have endured five years of battle, first mom insisted joining a support group, i know it is another thing to add to the list that you can't possibly have energy or mentally handle. Yet she said they kept telling her it would get better and now five years later she said they were right. The second mother said all she did was cry at every doctor appointment, she went to her doctor who prescribed antidepressant. Two years later she finds therapy worked better as this is a traumatic experienced and you are traumatized watching helplessly, so seek out talking to therapist. Third, all of these 'specialists' state everyone reacts differently so no one will commit to diet issues. This disease is two fold in the inflammation needs to be addressed and the immune system needs to be stopped from attacking intestines. In corporate inflammatory foods such as ginger, peppermint etc while avoiding the worst offenders; corn, berries, seed, dry fruits, spice, fried and high fat. The third mother suggested boost drinks for nutrition because it was the only available gluten free product. Yes no gluten and dairy until remission as it cuts down on inflammation. what does it leave to feed them; brown rice, miracle broth (recipe google), avocado, chicken, fish and in the last 6 months more and more gluten, dairy free products are available- just read package discard if corn used. The four mother did as you mentioned, prayer, look above and remember He promises He will never leave you or forsake you. We are praying for you!

 Reply posted for saraspot.

I feel the same way right now.&nbsp;<br /> <br /> My 10 year old daughter was just diagnosed this past week. I HATE all of our options. I just want my girl to be healthy and happy without all of this crap running though her already weak body.&nbsp;<br /> <br /> Shes on remicade, methotrexate, Prilosec, and prednisone. My hearts broken for her. I have so much fear for her future on these medications. I&#39;m also so worried one of the other kiddos might end up with this as well. Just trying to trust in the Lord and ask for guidance.&nbsp;

 Reply posted for marymarty.

Thanks for sharing your knowledge, and it's great to hear your son is doing well.  The doctors decided it would be in my daughter's best interest to have the surgery, and we'll be checking in to the hospital tomorrow. Hopefully I've made the right choice. Good luck to you.

 Reply posted for saraspot.

I have had the same feelings as you concerning the medicine. My son was diagnosed at 11.He is now 17. I kept with the biological drugs though. I wanted him to reach his full growth potential. He is still underweight however. These drugs do work. Maybe there will be a better solution in their lifetime. Best to treat agressively so your daughter can grow.