Decision: Surgery, Remicade or 6MP?

[AntsMommy]

Today was Anthony's colonoscopy/upper endoscopy. It appears that everything is isolated to the stricture in his terminal ileum.

So, his ped GI told me today that I need to choose between:

• Surgery to remove 6 cm of small intestine where the stricture is
• Remicade
• 6MP

I admit, I don't know much about these treatments because (maybe denial?) I thought this was something we would have to worry about eventually in the future, if at all. Ped GI didn't really give me any idea on what she recommended, just said to go home and talk to my family about it. Well, I am a single mother of 3 with virtually no family around, so there really is no 'family' to speak to and I really don't know what to do.

I just read that both remicade and 6MP have an increased risk of fatal lymphoma in teenage boys. I know that every drug has it's side effects, but this scares me.

He has only had this for 3 months ... I realize that this is not getting better (we tried pentasa, asacol, prednisone 2x, insurance will not pay for entocort) but does these treatment choices seem extreme for someone new to Crohn's? Or am I still in denial?

She did mention that even if we did surgery, he will eventually need to be treated with medications anyway.

If this was your 14 year old son, what would you do??

Thank you so much,
Kelly

 

[AntsMommy]

Wow, no one with any input? ale:

 

[jkd1111]

OK, I'll weigh in....I have had the resection in the same spot as Anthony and was symptom free for many years. I am not a DR, but I agree with yours that he will eventually need the meds. But the longer you can keep him off them the better.

I was so sick because I waited so long to even see the DR before I had my surgery. My appendix burst and that is when they found the diseased colon. 10 weeks after the apendectomy, they did the right colectomy and I never felt better. That was when I was 30. Unfortunately, I had symptoms for about 10 years before that and was too embarrased to go to the DR. Started having symptoms again about 11 years later with HUGE weight loss and fistula. Had 4 major surgeries for the fistula and am now on Remicade. I was offered Remi when it first came out and after reading the side effects decided against it. Had I had it then, I probably wouldn't have had the horrible fistula fisaco I have had to endure.

I guess what I am saying is I belong to the "if it is bad, take it out...if it can be fixed, fix it" club. I was so glad I had the resection done as I really didn't know how sick I was until they got all the bad stuff out. And it put off the drug decision for quite some time. As for recovery, it wasn't bad at all.

Now having said all of that, I am not DR and this is just my experience. I know that you will make the right decision for your son whatever it is. This is a tough disease to handle, and I am so sorry he has it so young.

 

[CDDad]

Hi Kelly,
I don't know your son's story, but I think he might be on remicade or mp6 in the future anyway. In my case, I just had all the bad parts taken out, but my GI still wants me on Humira. The thought is, Crohn's is going to come back, and do you want more surgery? Hopfully these drugs keep me and your son in remission.

I don't know if these drugs are going to heal a stricture that may be "too far gone". In that case, surgery is the answer. Then keep him on maint. drugs to try and prevent this in the future.

I know the drugs are scary, but if you want really scary, google the Proctocolectomy I had. Things can get bad without the maintanence drugs. yes, I did the denial thing for many years.

I had my surgery at Mt Sinai, many top surgeons there.

good luck - I know this is such a tough decision.

 

[AntsMommy]

Thanks so much everyone. I am so, so lost.

I go back and forth with feeling like I want to prolong having to resort to the drugs as long as possible, to feeling like I should try them first since he will eventually need them anyway. The side effects scare the hell out of me, to be honest. And then to read - on the Remicade website - about both drugs increasing the risk for fatal lymphoma in teenage boys. I know it is rare, but still!

Crohn's Dad - like you, I am unsure if the drugs can repair the stricture at this point. I meet with the surgeon next Tuesday and will talk to the Ped GI again next week also.

I tried to get an appt. at the Mt. Sinai IBD Kids center. It is a couple hour trip for me but I would love to be able to go there to see what they say - but they don't accept my insurance. There is simply no way I could pay cash.

Thank you all for listening to me freak out and replying.

Kelly

 

[Nica]

Kelly,
I posted on your other thread as well.
If you find a really good GI they will call the centers for your son. My GI calls Sinai hospital when I flare to see if there is anything else to try.

 

[pais16]

Hi Kelly,
My SO has stricturing CD and we have learned nothing will fix a stricture except surgery. He just had surgery (he turned out to have 20 strictures- details on my other thread) at NY Presbyterian/Cornell and was fully covered by insurance. His surgeon is a Chief of Surgery there and specializes in bowel saving strictureplasty- he has 30 yrs experience on CD patients, thousands of surgeries- (however I am not sure if he operates on pediatric patients but there may be others there that do). Have you called there to see if you would be covered? We live in NJ and it has been really tough having him there and trying to handle that and be here for our 7 yr old but we feel it's totally worth it to have gone to the best we could. Our family helped a great deal the past few days with my son. Any surgeon here in NJ would have likely just resected due to the complexity of his disease. Instead- although he had over 6 feet affected, he only lost 16 inches.