Surgery vs Biologics

[glogua]

Hello...I am new to this, so please bear with me. I was diagnosed about 12 yrs ago with crohns disease. I am 43yrs old. I have been on alot of the meds like pentasa, asacol, azathioprine(also currently on), antiobiotics, prednisone, entocort, etc...Had to have surgery for a fissure and hemmoroids because of all the bathroom visits....I was in remission for quite some time. about 3yrs ago I lost my insurance and well you can take it from there. No Drs, routine tests, and no meds. Well I finally got back to Dr, and with the routine testing I have a 2ft constriction, which started when I was first diagnosed. We all know that doesn't get any better and the meds are not working anymore. My dr and I discussed either sugery to remove the 2ft OR go on Cimzia and continue the azathioprine. He has upped my dose to 4tabs a day. I know surgery is not the fix all and that the disease can actually become worse after surgery, but after reading about the possible side affects of the biologics, I just dont know what to do. They are both a little scary....Any insight would be greatly appreciated....I wonder if I would be the lucky one and remove the bad part, start from scratch and hope for the best...

Thanks
Glo

 

[Crohn's 35]

:welcome: to the forum! Glad you are here, lots of information and good people to help you out. I know first hand how you feel, I am not an advocate of either (no cimzia in Canada tho) Remicade is sought to be the first drug to try for strictures... but then it also depends how bad. Knowing what I know here, (my luck is always crappy..pardon the pun) but I have had both, if you can tolerate to wait 3-6 weeks Cimzia could work, I ended up with Surgery because there was no such animal as the biologics. I had 7 good years after a resection. But I was in denial and was still alight smoker and drank occassionally and had major stresses (men :yfaint) and then came a second resection and have been fighting flares on and off. Surgery is supposed to be a last resort but the condition I was in, I had loopy bowels and a fistula (so they said) and it had to come out. I was on Entocort after but my main thing was I had 1 week prior IV antibiotics and 1 week after. My second they operated when I was infected...dumb. You have a choice that no one likes to make but...it is ONLY my theory, I would try Cimzia and if you are still flaring then surgery. :hang:

 

[MapleLeafGirl]

I had to make the same decision of you. I went with surgery. It is a really small section for me that is causing me all of these problems and I now have at least two fistulas (internal) and I would just feel better knowing it was gone and starting fresh like you said. I am still young and I think I will need surgery eventually anyway and would rather do it now than wait. I am hoping for the best. Still waiting for the surgery date.

 

[xJillx]

Hi Glo and welcome! I understand your concern for the biologics. They can sounds pretty scary making it a tough decision. However, they have done wonders for so many and, as Pen has said, surgery should be used as the "last resort". Granted, you have to do what is right for you.

Take a look at the Treatment forum and all of the sub-forums. There is a lot of information in there for you about the different treatment options. And I bet if you post your questions in there, you'll get a lot of great responses from those who have experience with the biologics. Good luck!!

 

[ameslouise]

Hi Glo and welcome!

That's a tough decision to make. Sometimes it's easier to have the doc say "You must have surgery!" If there is a chance that the Cimzia can heal the strictures, then go for it. If the success rate of Cimzia healing the strictures is not one that you feel comfortable with, then consider the surgery.

It's hard to make the decision to have surgery electively. But *in my opinion* surgery is a treatment option and not a last resort. It's hard to go thru it - physically and emotionally, not to mention work, kids, and other factors you have to be concerned with while you are out of commission. But it may give you a much better quality of life.

Good luck making your decision!

- Amy

 

[spingirl]

Glogula - your story sounds a lot like mine. I'm 49 and was diagnosed in 1985. I was fine until just 2 years ago when my father passed away and stress increased...I, too, have a stricture. Not sure how big it is but I know its not small. They coudn't get through to do colonoscopy until I went to another dr. and after some prednesone - they were able to do it. At first they said surgery but 2nd opinon said to try biologics instead. I was relieved since if I have surgery it won't be a resection it will be my entire colon. I am not loving this medication but it seems to have helped a bit. I'm still early stages (on Azathioprine). I'm just so afraid of surgery and I feel like once that bridge is crossed -there is no going back. I decided to try the medication and give myself a little time to think clearly...but this is just me...and I might feel differently if it wasn't my entire colon...good luck to you. I'm sure you will make the right decision. You, I hope, have had several opinions...?

 

[CDDad]

Hi Glo,
If it were me, I would try the meds first. This is if your symptoms are not terrible right now. Why not give the meds a chance and maybe avoid surgery? My last surgery was excellent, and I seem to be Crohn's free now, so surgery can work too.

But recovery can be hard, and some people respond so well to the biologic drugs. Good luck with your decision. Just remember, the scary side effects happen to very few people. I'm currently on Humira and having no side effects at all.

 

[Jer's Girl]

Hi Glo! I say, always try meds first. I was on remicade for many many years and it helped me quite a bit, but i did eventually need surgery and it helped me very much too. Although surgery was the best thing I ever did, I am glad that I put it off with meds for as long as I did. Sometimes surgery can just lead to more surgery.

Good luck making this incredibly hard choice. I hope you find the right answer for you. Welcome to the forum!

 

[glogua]

Thank you all for your input. It is greatly appreciated. I guess I have alot to think about. I have to see the doc in a month and I should have more info on the meds. I guess we will see where I am at at that time.

Just very frustrated with this whole thing. I discussed this whole thing with my husband, and he seems to think that I should try the meds first as well, and if no change then the surgery. I guess what I don't understand is that my doc already said my constriction is what it is and that can't be fixed with the meds. They would only help with the inflammation now and maybe prevent another constriction. So you can see where my dilemma is...It kinda seems to me, that if I have the surgery, remove that part, I will prob have to be on the meds anyway...so as to this does not happen again.

 

[CDDad]

I can see your doc's point. If you have a severe stricture or narrowing, the meds may not help. Sometimes, things are just too far gone. I think that was my problem pre-surgery when Humira did not help me.

This is a dilemma - but maybe still depends on how bad your symptoms are for you lately. If you're in bad shape, waiting 3 months for a miracle that may not happen may not make sense.

 

[bavaria1105]

This sounds like the same exact thing I went through the last 4 months before my surgery. Finally after a few treatments of Remicade along with anti-inflammatories and steroids not to mention 2 visits to the ER, I opted to have the surgery. At 23 years old it seemed too young but I was done with the pain and inability to use the bathroom. I'm in recovery right now so hopefully after this I'll be symptom free and on some sort of maintenance medication. Good luck in whatever decision you make!

 

[glogua]

Thank u once again. That is another problem lately...very constipated...now I don't go for 2 or 3 days and believe me I used to pray NOT to have to use the bathroom, but this is painful...I don't see the doc until mid may and I am thinking that this stricture is what's causing this. I guess we are a catch 22....suppose to have fiber to stay regular, but on the other hand, sometimes the fiber is what can destroy us....This is the most confusing disease...eat this, don't eat that, but that same thing might not affect you today and destroy you tomorrow...