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Remicade. Surgery?

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Crohn's Disease
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Posted 11/19/2011 11:49 AM (GMT 0)
Okay. Did my second infusion with remicade on monday. Everything went great. After worring about a reaction since I've stopped the med and re started it again. After I got home from the infusion I was very tired. I just wanted to lay down. But couldn't because I began to cramp real bad. Than I had to run to the restroom. Had blood in my stool, more than usual. My back pain had gotten worse than it had been before. So I took more meds and waited it out. It got under control. Than I began to think, maybe surgery is best for my chrons. But its severe and I got this feeling were I might need to carry a bag for the rest of my life. Hope I wouldn't have to. I just want to know who has been through surgery and how has it helped and what did you go through. I know having chrons is enough. Puts you through a lot. I am only 19. And had it since the fifth grade. Really sucks. Anyways, forgot to mention.. The next day after my remicade infusion, I had to admit myself in the hospital because the pain was not going away from my back and my legs began to get weak and numb from time to time were I would freak out and lose my balance than I started experiencing dizznes and light headed. Hospital was no help because they didn't know my whole story with the flare up and everything. So I discharged myself and came home. Doctor hasn't called back for appt, so I guess he really aint worried about it. Sorry for long message. Just if anyone that has been through surgery please please contact me and let me know. That would be very kind. Thank you.
Posted 11/19/2011 3:44 PM (GMT 0)
I had a surgery and like most it was the scariest thing to happen in my life. The people here are very supportive and imformative and that is what helped me get through it.
I can't tell you to have surgery or not but I had to have it, no doubt about it. It's a decision you and your doctor have to agree on and ultimatley it is your decision.
Your on remicade, maybe you ask your doctor about Humira as it has human protein instead of mouse protein and your body may accept it.
I wish you all the best.
Posted 11/19/2011 3:49 PM (GMT 0)
I've had three surgeries, and I would love to say that they helped, but I can't, although I will admit my
second surgery did at least give me a little time out. Unfortunately with this disease, it will usually always
come back, and usually at the surgery site. So having said all that, I would keep trying with your meds.
Did they tell you why you felt so unstable after your infusion? It maybe that remicade is not right for
you. There are more to try if needed. If in the end surgery is required, let's hope it will put you into a long
remission. Good luck!
Posted 11/19/2011 3:54 PM (GMT 0)
Surgery should be considered a last request. What they take out cannot be put back in. So I agree with the above, maybe you need to try other meds first. Do you have any strictures? How is your quality of life right now? If its really bad, you are in the bathroom multiple times a day and can hardly move thru your day without alot of discomfort, then surgery should be an option. But if things are not that bad, and you haven't tried other meds other than Remicade, then I would try other meds. Good luck!
Posted 11/19/2011 11:53 PM (GMT 0)
 

Have you tried any natural remedies? I know the SCD/ GAPs diet has helped many many people. I'ts not easy to follow. I would think it's harder for a 19 y/o to follow but maybe it can help?

I hope you feel better.

Posted 11/19/2011 11:55 PM (GMT 0)
Nanners I hope you meant a last "resort"!? lol
Posted 11/20/2011 2:39 AM (GMT 0)
I agree that you need to make this decision with your doctors and loved ones. I had surgery twenty years ago, when I was 26, and it saved my life. I had no choice, it had gotten so bad. I suppose it depends on what they're removing. They took out one foot of my ileum, and I guess you have a lot of small intestine, so I could have that done several times, if needed. I get by avoiding corn and taking Pentasa, with only relatively mild attacks every few years. So, surgery worked wonders for me, but again, it depends what it is. I understand that Crohn's normally comes back at the site of the surgery, and that's been true for me. Altho, since now I know what's going on, we've been able to manage it better.
Posted 11/20/2011 7:48 AM (GMT 0)
Hi Casey- It's a hard decision..one that you only start thinking of when you are at a point in your life where quality if life is pretty bad.

My husband has had Crohns since 15 yrs old. We've been married for 4 years and the we had gotten used to living a life that was just "getting by" everyday and uncertainty because we don't know how he would be feeling day to day. Well, the last two years were horrible and he was extremely sick. He lost 50+ lbs. We had a daughter 15 months ago and he pretty much missed the first year of life. He tried remicade, Humira and all other meds before that. Humira actually helped him, but not enough to make life enjoyable. Also was on scd, gluten and lactose free diet.

He said he would NEVER have surgery. He has strictures in his colon and his rectum was very diseased. His GI couldn't even get up past 15 cm with a pediatric scope. So, it wasn't if he got colon cancer, it was when. So, he decided to get a total colectemy (colon, rectum out) and have a bag. A huge decision!

He had his surgery Oct 31st, 2011 and when he woke his from surgery, he smiled and said I'm not stressed about having to go to the bathroom. Recovery has been tough, I won't sugar coat it. But my hubby finally seems happy and is starting to get excited about all the things he wants to do with me and our daughter. Today he went grocery shopping and ran errands without having to worry about where the bathroom was. :)

I think most people who are considering surgery are at a point where they have tried most meds and are sick and tired of being sick and tired. After Humira, he didn't want to try another med and wait another 6 months to feel better.

He's glad he made the decision and I'm ecstatic I have my husband back!

Good luck!
Posted 11/20/2011 7:53 AM (GMT 0)
BTW, he's 33 years old...so not as young as you, but fairly young and will have a bag for the rest of his life. But after only 3 weeks, he's getting used to it and seems pretty content with results.
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