Decision to make: surgery, 6mp or remicade?

[AntsMommy]

Hi everyone,

I posted this under treatment yesterday but didn't get any responses. I am really hoping for some input, maybe this was a better place to post it. Please let me know what you think!!

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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

 

[Nica]

Hi Kelly,

Sometimes crohn's even newly dxed needs some heavy duty treatment.

My personal thoughts are I would go for Remicade. Yes there can be nasty side effects, but the chance of cancer is really really low. I personally would want to put off surgery as long as possible.

The other side of that is that having surgery will remove the stricture completely, meaning he will never have that portion of his bowel acting up. From my understanding (I have never had a resect so I do not know this personally) surgery is a temporary fix for crohns.

It usually moves on and continues making ulcers and other bad stuff right next to the surgical sight. I personally want to reserve surgery for emergency-situations.

 

[crazycanuck]

Hey there god Im sorry such awful choices eh? I'm 19 and a male and on imuran which is comparable to 6mp and remicade. Basically it's been a life changer for me and the increased risk is of about 2 or 3 people in every 10000. I believe the forum member peaches mentioned that if memory serves. I know the side effects are scary especially for a mother. But the way I look at surgery is that it's irreversible and Ive never been offered that option but to me seems a last resort option. But that is only me personally. The argument could be made he may be able to avoid all weight drugs with the surgery?

A side note is that your desicion may be made for you with regards to insurance. Remicade here in Canada costs $1000 per vial. For my 4 vials well $4000 per infusion.

No matter what your desicion ask questions. Ask your doctor and get second opinions. I know there is a tendancy to rush desicions when you see your boy in pain and sick but please take your time to do what is best for you and your son.

Good luck and keep us updated.

 

[Dexky]

Kelly, EJ has been on 6mp nearly a year. When he started, we were clueless. We felt powerless and completely at the whim of the GI. We read about 6mp and were terrified. He's had a relatively good year though Kelly. I know a year isn't the lifetime we wish for our kids but our kids are exceptional. If our GI had chosen Remicade first, I guess that's where we'd be. If he'd asked us to decide, I don't know what we'd have done. That's a tough call Kelly, but I do believe I'd try the med route first. Whatever you decide, you are doing the best you can!

 

[AntsMommy]

Thank you all so much for replying. I am here, reading, reading, and reading ... still unsure. I seem to change my mind each hour. I have a meeting with the surgeon to discuss on Tuesday, and I am making a list of questions for the Ped GI about the medications. I know she is supposed to be good at what she does, but sometimes she is hard to talk to because she says things as if you are supposed to know. For example - when she told me Remicade was given by IV, I asked how often and she said, "I already told you, its a zero-two-six (something or other)." I still have no clue what that means.

I am also checking other places in NYC. It seems no one further away takes our insurance, and unfortunately, this is a huge factor for me.

Thank you all for your replies, they are all really very helpful, even if people have different perspectives - they are all good to hear.

 

[Nica]

take your time and get all the info. Ask your son what he wants as well. Surgery can end up with a pouch if things get complicated. 14 is a hard enough age without this.. I wish you the best of luck

 

[AZMOM]

It is hard to make these big choices I know. We have not been faced with surgery but we started 6MP at diagnosis. It takes awhile to work but our daughter (who is now 7) has maintained remission now for 18 months on 6MP. You certainly have to balance the risks with the benefits but it sounds like you have 3 viable options.

As for the doc, yes they are busy but you are paying them to help you manage this. I drag a notepad to visits with my questions written down and make sure I go through every one before I let them out of there.

After all the reading you have been doing and the next visit, hopefully you will feel better about making the choice.

Take care,

Claire's Mom

 

[Mami]

HI Kelly,
We're newly dx'd too and on 6 mp. Its too early to tell yet if its helping my daughter...but I was very scared when I read about the side effects. After a lot of research and helpful people on this website, I've come to accept that I have to do what's best for her now, day to day. It bothers me too that specialists just seem to live in their world and don't understand that they need to talk to us at our level, as parents of a hurting child...

I also believe that I read the Remicade cancer rate is about 6 in 10,000. Scary I know. We are all there with you, frightened for our children. I call my persistent changing thoughts my "committee". They are always with me, even at 2:00 in the morning when I should be sleeping...instead the committee is worried about the next pred wean and so on. I hope that this site and the people here can be a good sounding board for you as they have been for me. LOTS of knowledgeable people that understand what you're going through.

 

[DustyKat]

Hi Kelly,

This is a difficult one to answer and I can easily see both sides of the argument as I now find myself having approached CD from two completely angles.

Roo had surgery straight up, no choice, and her outcome has been very positive ~ remission for 4 & 1/2 years and counting.

Matt has just been diagnosed and I must admit I would find it hard to say surgery in his case as he is nowhere near as ill as Roo was. Perhaps this clouds my judgement as her case was on the extreme end of things. I may be wrong but I have the impression that the GI we see is quite aggressive and doesn't beat around the bush in his approach to treatment. Matt at this point in time is not at risk of blockage but this may give you a comparison as to the treatment plan laid out for us.

Currently on Prednisone 40mg for 3 weeks (1 week in so far) and then taper 5mg every 5 days. He will finish his taper 27th January. He is also currently on 50mg of Imuran daily, this will be increased to 100mg daily if his TMPT result is satisfactory.

We see the GI again on January 18th. If he is responding well we will stick with that, if not the GI has said he will apply to the government for Humira.

At this point he does not see surgery on the horizon but if it does come to that then resection or stictureplasty is also an option. Depending on the symptoms and quality of life I personally wouldn't always deem surgery to be a last resort. If symptoms were severe and/or persistent I would find it hard to believe that your quality of life isn't quite adversely affected in which case I would probably opt for surgery sooner rather than later.

If I remember correctly you were questioning his Prednisone regime at one point. If you still have doubts about his dosage and taper then maybe that needs to be revisited as well. Was he treated appropriately in the first place and given enough opportunity to gain remission via that method.

Dusty. :hug:

 

[AntsMommy]

Thank you everyone.

Dusty, yes - that was me with the pred taper problem! I did call the GI and she agreed it was not right and she called in more pred to taper it down correctly. He is now off the pred, only taking asacol, and not feeling well on a daily basis. Pain, no energy. Not himself.

AZmom and Mami, thank you both for your responses and sharing your experiences. I think that due to the amount of time it takes to become effective, our doctor seems to see that as a last choice.

I have a meeting with the surgeon to discuss surgery on the 20th. It was supposed to be this Tuesday, and now he moved it (grrr). I am also working on getting Anthony an appointment at Mt. Sinai. They don't accept our insurance, unfortunately. Next week, I get biopsy results and discuss the medications with the GI. I think I am leaning more towards surgery or 6MP than remicade - I am not eager to sign him up for a lifetime of infusions, but we will see.

Thank you all,

Kelly

 

[crazycanuck]

Sorry just one thing Im not sure if it was ever made clear but infusions are usually every 8 weeks on remi so 6 per year. But good luck with your desicion I cant imagine the stress it must cause but everyone is here for you guys and I hope he starts feeling well soon!

Ps I had absolutely no luck with asacol either. That stuff and my doctor is the reason Im even onto drugs like remicade and aza.

 

[AntsMommy]

Thanks CC, she did eventually explain the infusions would be every 8 weeks.

He has had a bad weekend. Pain the entire time, just very tired, laying on the couch the entire time. He is not himself.

He asked me if he had a say in his treatment, and told me he would like to have the surgery because "at least he might have a little time being normal again before needing the medications." That broke my heart ... I would give anything to have him "normal" again.

I am going to call his GI tomorrow and see if she has the biopsy results and ask her what the odds are that either medication would really FIX the stricture. Is there ever a point where it gets too bad to reverse with meds anyway?

 

[Nica]

Hi Kelly,

I have had several severe strictures over the course of my disease. I am still without having any surgery and am pretty darn near close to remission at this point. I know I have A LOT of scar tissue in my colon, but at my last colonoscopy they did not mention strictures at all. So yes time and meds can fix it.

Do you have him on a low-residue diet? That should help some of the pain associated with a stricture. I know going on a liquid diet when it was really bad helped me.

If he is feeling so poorly perhaps he should be put back on Pred while you and his doctors figure out what is the best course of action.

Something to consider is are they going to take out all diseased parts of his G I tract, or just the stricture?

If there is anything I can do to help you please let me know. I have done most treatments out there and can tell you a bit about how it feels to live with them. I have not had surgery (aside from my gallbladder) so I can't help you there. I have never had an option for surgery at this point, even with the strictures.

 

[AntsMommy]

Hi Nica,

Thank you so much for the information! It is good to hear that you are heading into remission!

The colonoscopy/upper endoscopy revealed that there were no other diseased parts, with the exception of his stricture. We are still awaiting biopsies, but the pictures looked good. So, considering this, is this more reason NOT to do surgery? (Ugh, I am back and forth on an hourly basis!)

He is on a low residue diet, has been since September, but it doesn't seem to be helping any as he just feels worse and worse.

I am afraid the 6MP takes too long to get into his system, and I didn't really want to do the remicade. I just don't know. I am going to speak with the dr. tomorrow!

 

[Nica]

I understand totally not being sure. Surgery in the guts is a very serious thing. I know it is awful when your kids are sick. My son does not have crohn's but I can only imagine.

I would have a long, long talk with both the GI doc and Surgeon. From what I know surgery is a temporary fix for crohn's. Some people don't even have symptom free times before it starts up again. Others have years of remission from surgery.

Some of my questions for the docs if this was my son would be..

After surgery what medications are you planning to use for maintainence?

What are the chances of something going wrong in surgery?

What side effects can I expect from 6mp or Remicade?

How long is recovery from surgery?

Do you expect to be able to treat the stricture with medications, how long will it take to see some improvement?

I hope it helps, some. I am sure you have thought about all of this I am just saying to make sure I guess.

 

[crazycanuck]

Hey Im really sorry he feels that way thats not so cool and Ive been there before. I think we all have. But make sure he knows that its always possible to feel normal and people with crohns get to that point many different ways including surgery and/or medication.

I just posted this to another teenage crohnie here but I had a guy on here, GO Johnny Go, tell me once that a bathroom to us is like an inhaler to asthmatics. They arent embarassed to use an inhaler so why should we feel embarassed using a bathroom? Ive always thought of that saying since I heard it. I know at this point its beeyond just the bathroom but that may help in the future or now.

 

[Dexky]

Kelly, do you still plan to seek a consult at Mt. Sinai? With all these questions to consider, I'd say it'd be worth having more pro opinions.

And to Crazy and Nica, thanks for spending time in the parents section. Your first hand experience is invaluable and seeing you both here and doing well gives us all hope for our own kids.

 

[crazycanuck]

You just put a massive smile on my face. Im extremely happy to help in any way I can. I never really know if what I say here helps but if it ever helps even one person Im happy as could be. I know what its like having parents who care and I was very lucky to have that as your kids are now. Believe me when I say it makes all the difference in the world.

 

[Nica]

Thank you! If I can help someone with this god awful disease with my experiences then it was not all in vain.. ya know?

I think its awesome what you parents are doing. Finding out as much information as possible and truly taking the bull by the horns to do whats best for your children. I know they will have the best possible outcomes because of it! Sadly with this disease you can't just take what the doctor says and run with it.

 

[AntsMommy]

Dexky, yes, I am definitely still trying to get him an appt. there. Just a few more minutes until the office opens!

The only thing is - it is probably likely the appt. won't be within the next few days, so if it is weeks away I can't just allow him to remain in this condition while we wait.

Today he is worse. He has been up since 5 am in moderate pain and ended up having a mild asthma attack (he is asthmatic also). His legs hurt and he is very wobbly when walking.

Someone suggested getting back on pred until we have a course of treatment figured out (ty!) and although I'd hate to put him back on it, it is the only time he is almost symptom free so I am considering asking his GI about that.

Kelly

 

[Nica]

Kelly,

the pred will also take care of his asthma. I have it as well. I know how bad pred sucks but getting him through the holidays and while everyone figures out the best thing is prolly the best course of action. Plus if you go with surgery at least being on Pred he will be able to eat and build his body back up somewhat.

I hate pred, but I guess its sometimes needed. Just try not to leave him on it too long so he gets the long term stuff like I have now.

I don't know if I mentioned this or not, but my GI calls Mt. Sinai hospital for me when he does not know what else to do. I assume the kids department is as good as the adults, I think its a wise choice to get "expert" advice before making a choice like surgery. Other options might be the Mayo Clinic (I have been referred there as well).

If there is anything I can do please feel free to PM me. I am on here a lot through the day. (That goes for all of you parents as well!) My son is 13, so I do have some idea how things are at that age.

Hope your day is going well!