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Surgery? Or is it still to early?

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Crohn's Disease
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Posted 10/24/2007 10:17 PM (GMT 0)
Hey everyone. You guys probably already know my story. I got diagnosed with severe active crohn's back in March right after I had my two babies and I have felt like crap ever since. They tried all kinds of different meds on me but I have still not seen any relief besides my joint pain. I'm currently on Remicade treatments, but I'm not getting any better about my other symptoms like pain in stomach, D, and vomiting. I've been so stressed out lately that I usually have at least one panic attack per week. It's almost like I can't live with the pain anymore. My kids have to watch me suffer and it absolutely kills my soul. I haven't been able to do much over the past few months and I think its really starting to take a toll on not just me but my whole family. Most the time I can't get much pain control and it's not just that I feel so tired all the time and really sick to my stomach. My doctor wanted me to have 3 treatments before I considered surgery, but I think I'm just ready for relief no matter what I have to do to get it. I know I'm young, but I just don't feel like the medicine is helping me like it should. What are your opinions on whether I should go ahead and have my colon repaired???? It would help me a great deal because you all are all I've got in this, noone else understands. Thanks guys! :-) :-)
Posted 10/24/2007 11:10 PM (GMT 0)
I was like this at one point too. Just could not stand the pain. I just felt that I would never get better. Anyway, I moved and got a new doctor who had a really positive outlook. I also started getting the double dose of Remicade (10 instead of 5) and did that every 6 weeks and 50mg of azithioprene and slowly tappered to every 10+ weeks. I have been doing well with that. I guess what I am saying is don't give up hope. You will not always feel like crap. I am not sure as to whether you should get your colon repaired. I would try to keep out of surgery as long as possible personally. My old doc kept saying that I would need one of those colostemy bags but she was wrong and I am still baggless 3 years later. I guess keep your chin up and be strong. Doesn't it suck to be young and sick? Crohns is lame!
Posted 10/25/2007 12:44 AM (GMT 0)
Thanks so much for the advice, I will probably ask my GI at the next appt. to up my dosage on the Remicade and see if that helps me any more. I'm glad to hear that you are feeling well people on here assure me that there are brighter days ahead. I'm just severely depressed and don't know how much more of this crap I can take. I think the worst part for me is seeing my kids suffer from this, I want to be a better mommy for them, I'm just too tired all the time.
Posted 10/25/2007 1:10 AM (GMT 0)
i absolutely understand your pain. and i have only been diagnosed since august! so far i have been on pentasa, entocort and now prednisone. i have some relief with my symptoms. i only get d once or twice a week now. i get a lot of bloating and a lot of pain. i am sick to death of taking vicodin and that only helps with some of the pain. my gi said i will need surgery to fix my stricture at some point, honestly, i am ready for surgery. i might be going on 6mp next week, i will find out tuesday at my appointment. it is terribly frustrating. i feel like i am trying to do all the right things with diet & meds and it makes somewhat of a difference but it really gets me down that i am in pain everyday. it just doesn't seem right!

i understand the breaking point. try to hang in there and maybe talk to your gi about the surgery, the pros and cons and really think it out.

good luck and keep us posted :)
Posted 10/27/2007 1:42 PM (GMT 0)
I just had the surgery after a flare that caused a blockage that almost killed me. I feel great now. But I had to do the surgery. They surgery is hard, painful and very difficult not only on you but your family. I am pain free when I eat now. I still will not have a salad again. I can actually enjoy food again. But I waited until the last resort for surgery. Talk to GI. My GI and surgeron were my life savers.

Deana
Posted 10/27/2007 4:02 PM (GMT 0)
Kandice,

I'm so sorry this is all happening for you. I think increasing the Remicade might be a good strategy before the surgery -- let us know what the doctor says about that!

I'm a single mom and the worst thing about being sick has been trying not to stress out my kids, who have already been through alot the last few years with my separation (unreliable dad, had to move suddenly, etc). I'm not having as much pain as you are, but I have been sick and missed some work every week since I got out of the hospital about six weeks ago. I notice my kids "watching" me sometimes to see if I'm OK and that just breaks my heart. I mostly try to not share with them if I'm feeling unwell -- they've been through enough and the deserve a healthy mom. (

On the plus side, my kids (and yours too I know) are amazing -- truly resilient. I hope that in some small way they are getting the message that hard things can happen in life, but that life can still be funny, sweet and full of joy.
Posted 10/27/2007 5:35 PM (GMT 0)
This is helped me so much. I will keep you guys posted! :)
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