New looking for help

[heatherk]

new looking for help

First post here looking for help for my 14 year old son, So in May we where told our son has Crohns Disease, he has always went to the bathroom more than normal most of the time but never had any pain or anything so we thought nothing of it, with in 1 year he got 2 large absesses on his but, after the second one we where sent to A gastro Dr. and then told they are fistulas. Tried flagyl he could not swallow it made him gag, then was given 6mp, that caused him severe vomiting and fever the doctor thought I was crazy and swore it was not the meds, after stopping it and starting it several times I told the doctor I will not give it to him anymore. Then he gave pentasa 250mg 10 times a day, well he took it for about 2 months, back to the doctor and are told it is not helping at all so he has to go back on the 6mp, I do not want to do that he was not happy and said then we have to try remicade. I was not very happy with the way he spoke to me so I went for another opinion, we really liked the second Dr. he just explained things better, but his opinion was the same regaurding the remicade, so he wants to start him on it?
I have read up on it but am looking for other opinions, side effects, results,ect. any info you have please he is only 14 and I am heartbroken over this and I just want to do what is best for him. We have him on no meds for about 3 weeks and he feels good and has only been going to the bathroom once A day, as odd as it seems he has been taking kick boxing also in this three week period and this is when he started going the bathroom once a day?, only problem is the fistula is still not healed all the way and he is terrified of getting another one.
Also what has your ins. covered for the remicade, and what is your out of pocket for each treatment? I don't mind paying if it works but am so scared of what effects it will have in the future?
Thanks for listening

 

[beth]

Hi Heather,

I just got back from the hospital having had my third fistula op this year! Whilst remicade, I have heard, is pretty good for fistulas my doc's are keeping it in reserve for later as there is so quite a bit they can do to sort the little horrors out. My Crohn's seems others asymtomatic like you son sounds like. Remi is pretty heavy weight stuff, but if the doc's are saying for for it... well I'd recommend listening to them.

Having said that 6MP made me do the violent vomitting too. So much fun this disease.

Anyway. Welcome. Hope you find the information you are looking for. And I'm sure you'll find those in the Remi club popping up to give their take on it.

 

[DMS]

Hi Heather,
Welcome to the forum, I have a 16 year old son that was diagnosed earlier in the year with the exact same problem, so I know how you are feeling, and I'm sorry that your family is dealing with this - not what a teenage boy should have to be thinking about.

Here's a quick recap of our story.
After being put on ignore by the GI for 5 months (actually they admitted later they had lost his file), they wanted to put him on Imuran. Because he was feeling fairly well, and Imuran has only about a 65% chance of working on fistulas we felt the negatives outweighed the positives for this drug. We started him on the Specific Carbohydrate diet and LDN in August, his abscess is slowly getting smaller and he has now told me that the one side of his fistula (he's got a few of them) feels "dead", the other side is still tender and draining.
This is our experience only, and just one more thing for you to look into. He is not healed of the abscess and fistula yet, but his good days are better, and his bad days are not as bad as they were a month ago.

I agree with Beth, the Remicade seems pretty heavy to be putting him on at this point, as he will probably develop antibodies to it after coming off of it.
Also, Remicade and 6mp is not a good combination for young adolescent boys.
Again, I would like to stress that this is our experience, and I am in no way advising you, just letting you know that there are other options.

Please feel free to pm me here or check my profile for my e-mail address and contact me if you would like to talk further.
All the best to you and your son.
Donna

 

[imisspopcorn]

Welcome
I am always so sad when I hear about young people being diagnosed.

I am on Remicade. I would not have any problems putting my children on it if they needed it. Remicade has been shown to really improve fistulas. Sometimes improving quality of life outweighs the risks associated with a treatment. I know you must be agonizing over every decision.

This is a very isolating and embarassing disease. I really hope that you all will find some peace and hope.

There are quite a few threads about fistulas and their treatment. They might be helpful for you.

Also, Remicade has a program called Remi-start that helps defer the out of pocket costs for patients. You can google it to find out more info.

I wish you all the best. Please let us know how things go.

 

[heatherk]

Thanks for all your help so far.
Let me ask this has anyone ever hear of smashing the flagyl and putting it in A capsul? I was told I could not but have talked to people who have ?
I am very worried about starting the remmicade fo my son so young but 2 doctors already said that is what we should do? Should I go see someone else? third time is A charm.

 

[Crohn's 35]

Hi Heather, so sorry your son has been diagnosed so young, half the battle is finding it and now with treatment sometimes is the hard part. I have been on and off Flagyl and Cipro many years, seems to be the only drug that works for me, 6mp made me ill too. As for Crushing the flagyl you may want to talk to a pharmacist, as most drugs are coated to sustain the ability to work in that area, same for Pentasa, cannot be altered. You could see a third opinion but I think you may get the same answer, Remicade helped alot of people. It is a hard decision to make for your son. But I think if you asked him if he wants to be feeling better he may want to try it. No drug is without side effects, and we are all different how it reacts to us. Best of luck to you and your son. Let us know what you decide.

 

[imisspopcorn]

Thanks for all your help so far.
Let me ask this has anyone ever hear of smashing the flagyl and putting it in A capsul? I was told I could not but have talked to people who have ?
I am very worried about starting the remmicade fo my son so young but 2 doctors already said that is what we should do? Should I go see someone else? third time is A charm.

Yes, check with the pharmacist, but I think you can crush flagyl( As long as it's not the extended release formulation). Also check if it comes in a liquid form.(I'm almost positive it does) You can get a pill crusher at any pharmacy. Also, if you mix it with something that is dairy like yogurt, ice cream, or pudding, it will mask the horrible after taste. Good luck