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Completely overwhelmed

Hi! I came here before a couple of years back and I soaked up SO much information! Unfortunatly, I lost my user name and don't have my old email address with my old login here. I was pretty quiet when I was here before, just trying to learn everything I could to try and help my son.

Harley is 10 and was diagnosed with crohn's 2 years ago. Unless you count in the 4 years before that when he went untreated because the gi doctor told us that it wasn't crohn's, but sent a report to my son's peds doctor stating it was. We were told to come back if he had any more problems. Thankfully he went 4 years without problems, but that means he went untreated for 4 years.

The past 2 years weren't too bad considering what others have gone through. Harley has learned about crohn's, taken responsibilty for his treatment, and has even met some good friends at camp for crohn's kids. We are at a major turning point with his crohn's and we are both overwhelmed. We would never have known he was in a flare up based on how he feels. No extra bathroom trips, able to eat, and thankfully NO PAIN! The only way we had any clue anything was going on was because his stool sample came back high, 2000! Then he got an abscess, that is (or became?) a fistula. His numbers went higher. Then he had the abscess removed and his numbers dropped by half! Then the next sample the numbers were rising again. He then had surgery and they advised it is a fistula. We were expecting high numbers from that sample, but it came back 800!! Last night when I told him that, he was so happy! The doctor had started talking about Remicade awhile back, but both my husband and I wanted to try something else first. His doctor did a blood test a couple of weeks back to see if he was able to do 6MP and the test came back fine. The first words out of Harley's mouth last night were, "Yes!! We can try 6MP instead of Remicade!" You see, this child is deathly afraid of needles. Every time the doctor says they need blood, Harley immediatly bursts into tears.

Then this morning, Harley's nurse called and asked us to come in for the tests that have to be done before starting Remicade so that if the doctor decides that needs to be done at his appointment on the 6th, they can get started right away. WHAT!?! Here is my problem with Remicade. Right now the only medicine Harley is on is Apriso. When the original topic of Remicade came up, I asked questions, and basically the doctor handed me a pamplet about it and walked out. I have tried asking why this is the next step and all I seem to get is mumbo jumbo talk. I want to know how it will specifically help HIM and where he is with his crohn's. All I want is an explanation as to HIS crohn's and the reason HE needs it. I just feel like she is rushing through patients and pushing meds. I am not opposed to it if I can get those answers and know my son does truly need it at this point.

Jessica
 

Tesscorm

Moderator
Staff member
Hi Jessica,

You are absolutely right in wanting more information!! I would not be comfortable adding these medications to my son without answers to the questions you posed! It's very unfair that your son's GI is expecting you to make these decisions without explanations! Is it at all possible for you to get a second opinion from another GI? If not, is it possible that you can, at least, speak to your son's GP and discuss your questions and concerns?

A very safe treatment to consider is Enteral Nutrition. It's downside is that it is a challenging treatment - no food for usually 6 weeks, EN formula only. However, its benefits... a comparable success rate at inducing remission as steroids, has anti-inflammatory and healing properties, provides all necessary nutrition, allows for bowel rest and has NO side effects! It's commonly offered as a first-line treatment for children around the world but, for some reason, is much less often offered in the U.S. (perhaps because of patient non-compliancy???). I believe it works BEST if the disease is in the small bowel but does work/help even if located elsewhere. This was the treatment offered to my son to induce remission and has been his maintenance (with all food added back!) for over a year now. He has responded very well! :) Here are two links for further info on EN:

http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/forumdisplay.php?f=161

Another treatment option is Low Dose Naltrexone. This also has very few side effects. As there are only one or two studies in using LDN with Crohns, many GIs are either unaware of it or not willing to prescribe it (especially for children), however, there are a number of members here (children and adults) who are using LDN with success. Again, here is a link:

http://www.crohnsforum.com/forumdisplay.php?f=32

But, having suggested EN and LDN, I am not saying that 6MP or Remicade should not be used; only offering other options. Also, as you son has had issues with fistulas, I believe Remicade is used to treat fistulas.

Please also have a look through the Parents of kids w/IBD - you'll find lots of wonderful parents, always willing to share their knowledge, whose children are on 6MP, Remicade, EN, etc. I'm sure they will be happy to answer your questions and offer you support!

Good luck! I hope you are able to get some answer!!!

:ghug:
 
So sorry that Harley has been through so much. I would write out all the questions and concerns you have about your son's disease, the stage it is at and the treatments available then advise the GI you need to feel comfortable with your decision before whatever treatment is started. Remicade has a good track record with the healing of fistulas and has the ability to work quickly on the inflammation that is causing damage to the GI tract where as 6mp can take up to 3 months to reach therapeutic levels. EN could be used along with 6mp to allow the bowel to rest or for a lot of kids on here, as Tesscorm said as a sole treatment although I'm not sure of its efficacy when dealing with fistulas.

These are hard decisions for all of us to make and in order for you to have confidence in the doctor or any treatments he reccomends you have to be comfortable that all your questions and concerns have been addressed so I would make that clear to this GI. I hope that whatever your choice the improvement is quick and long lasting.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome :)

It sounds like your doctor has a pretty terrible bedside manner, I'm so sorry you have to deal with that :(

When it comes to fistula, Remicade does indeed have the best track record of any of the medications. I'm glad that Tesscorm came in and talked about Enteral nutrition and LDN though. I'm not sure how LDN does for fistulae, but EN is fantastic all the way around.

If you haven't seen it yet, be sure to connect with the other parents in our Parents of Kids with IBD forum, they're a great group of people.
 
Then he got an abscess, that is (or became?) a fistula. His numbers went higher. Then he had the abscess removed and his numbers dropped by half! Then the next sample the numbers were rising again. He then had surgery and they advised it is a fistula.
This is the reason as others have said. I have fistulating crohns disease and please understand it is not to be taken lightly. If he is getting it at a younger age even more reason to start a biologic. Please read this link it is one of hundreds of reports of why a biologic will help. Good luck!

http://www.europeanreview.org/article/139
 
Tesscorm, thank you mentioning EN and LDN. We had not heard of either of those. My husband and I are going to look over the information this weekend. Our plan is to look over all the information of the different treatments so that we can be ready with all our questions for the doctor. Thermo, thank you for the link on biologic help. Clash, that is a problem. We don't feel comfortable with the information we have been given. I have a notebook that I keep in my purse so that whenever I think of a question I have about his treatment, I can put it down. We don't plan on leaving the doctor until we have real answers. We are not fighting the treatment itself, put we want to make sure it si the best for him. Thanks again for all of your comments, they have helped and are appreciated!
 
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