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Ulcerative Colitis
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Posted 1/2/2013 2:46 PM (GMT -5)
I left my doc a message the other day how I was feeling bad on Humira but now things have turned around and I'm feeling so good. My nurse called and said this:

Don't stop Humira give it a month if this doesn't work you will need to have surgery to get your colon out.

I'm mean really? That's not something you pass through a nurse. No, if Humira doesn't work, I will try something else. My colon won't be coming out, thank you very much! She sux seriously, she's in more proceedures than seeing patients because that's where the money is at!!!!

Humira is working so far, I feel wonder. Not huge formed poops or anything, but the blood is lessening. If you would have asked me four days ago I would have told you, I won't be doing this again, but something change on New Years Eve and it good so far :)

But you can bet, I will be looking for a new GI if I have to stop Humira for any reason. She's never really been there for me, she's always going off the deep end, not very encouraging.

Posted 1/2/2013 3:06 PM (GMT -5)
oh linda! i guess i'm like "oh that's no big deal" cuz my nurse and GI tell me to get surgery every time i go in for a visit. i'm so used to it now that i don't even hear what they say.

there are so many things to try besides colon removal so i get what you mean. i'm glad you are feeling a little bit better. my GI office finally got my tb results so they should have sent out for humira. i've only been waiting over 3 weeks already.
Posted 1/2/2013 3:39 PM (GMT -5)
Hi Joanna, just stay on them about it. I told my script people I needed asap cuz I was so sick and they rushed it. I hope you have great results! I'm working on it. I think my pen misfired yesterday because the medication ran down my tummy, but they said don't worry, just do it again in two weeks. I will go over the tutioral again from Humira's website and there you can watch the video on how to inject it.
Posted 1/2/2013 7:59 PM (GMT -5)
That's obnoxious. When I was in the ER for food poisoning, the ER doc said "oh do you get to keep your colon?" Keep on them. I know lots have had great success with surgery, but it is still surgery.
Posted 1/2/2013 10:54 PM (GMT -5)
My GI loves to mention surgery too. Im trying all the pills in the world before surgery. Also I have no time for recovery needed afterward.
Posted 1/2/2013 11:07 PM (GMT -5)
I'm sorry therearemiracles! That's a terrible thing to say to someone over the phone. Where is the nurses' bedside manner!? How about she acknowledge you as a person with feelings, fear and pain.
Posted 1/2/2013 11:09 PM (GMT -5)
Sorry you had to go through that nonsense. I would have given that nurse a piece of my mind and then promptly hanged up.
Posted 1/2/2013 11:16 PM (GMT -5)
I am just so happy you're getting some relief. I hope Humira works for you for a long time. Maybe it's worth looking for a new GI before there are any further issues? That way you have someone who is there for you when/if you need them. There are a lot of things you could try but if you're a conservative doctor, you would probably say the last thing before surgery is Humira. I don't think it's nice for them to say it so matter of factually, it's your body, you should do what you're comfortable with.
Posted 1/3/2013 8:48 AM (GMT -5)
just got a call this morning and humira was approved. they said i'll have a home nurse come and teach me how to give myself the injections. i'm pretty nervous. i hate the side effects of drugs : (

as of now, i'm going 4-5x a day but the cramping with bms is the worst. i'm hoping i can get some relief from that because it's easily my suckiest symptom.
Posted 1/3/2013 8:49 AM (GMT -5)
My uncle said once: "I'm married to a nurse so you'd think that when I get sick I'd get wonderful care at home. But I woke up sick once and told my wife about how I was feeling. She ended up cutting me off mid-sentence to say get out of bed and go to work as you aren't dead yet" haha.

I think nurses and other medical professionals end up loosing their normal tactfulness, and empathy over time for things like that. It is a necessity to live in a bubble when you have to work with those who are injured and in pain on a daily basis. My aunt worked in the operating room for many years until she retired. She'd say that when you read in the morning paper about some drunk fool who wrapped his car around a telephone pole at 2am the night prior, that she was likely the person who had to stitch him back together again. So a cold or flu... no big deal ...
Posted 1/3/2013 8:54 AM (GMT -5)
banana- I get my pens on Friday......we can comisserate together.
therearemiracles......YEAH!!!! So glad you are feeling better!!! Great news!

As for the surgery part....my gi never mentions it unless I bring it up first. Or unless he wants to scare me into doing something (usually working out). Goes something like this, "You better start working out again, just in case we need to do surgery. You will recover a lot faster if you are in good shape". I just roll my eyes and say something like "Well, if you could get me feeling better, then I may feel like working out again". I love my GI. We don't mince words.
Posted 1/3/2013 9:04 AM (GMT -5)
I'm glad you're starting to feel better. My GI is really pushing for me to try Humira but I'm just not ready yet. It's good to see positive results from you and I'm anxious to hear how the others who are getting ready to start it do with it.

Every GI I've ever been to has mentioned surgery. The GI who diagnosed me, brought it up at my very first appt. after being diagnosed. I think that is why I've been to so many GI's, I just can't find one who doesn't give up on me. The one I'm seeing now seems good but I've only seen him a few times so we shall see...
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