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Hey everyone, Update from 9/21

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Posted 11/28/2009 1:04 AM (GMT -5)
Hi everyone


My update is pretty good actually... I got denied for Humira, but approved for Remicade. I had my first infusion on October 22nd and the next day I had NO bleeding and normal poos for the first time in over a year! It is amazing to me how fast it worked.. While at the hospital getting my infusion, I had a bloody, mucousy poo and I was expecting it to take at least a couple of weeks to kick in.. but the very next day??? Wow...



Now, my only problem is I don't want to be on Remicade very long as it has a bunch of risks of it's own.. such as lowering my immune system which increases my risk to infections.. and also developing Lymphoma cancer or any other cancers down the road.. eek..



So I'm really considering having the surgery anyways... The surgeon I talked to (on October 22nd) suggested I have it done while my colon is in remission from the Remicade to make the surgery easier for both he and I.. Recovery would be quicker and I'd be out of the hospital in 5 to 7 days... I still am thinking I'll wait about a year or so.. just to give me time to adjust to the thought... but I want to rid myself of any worries of my disease coming back if the Remicade stops working or having issues with all the meds I have to be on...



SO.. now.. this is the real problem... Embarassing as it is.... I'm terrified to have the surgery... I'm so afraid of feeling sick afterwards.. Pain isn't an issue, but feeling sick is... (this is SOOOOOO embarassing for me)... OK.. here goes....I haven't thrown up since I was 8 years old and I'm 46 now.... I am emetephobic.. which means I am TERRIFIED of throwing up.. I have memories of it from when I was little, but when I get nauseaus now, I freak out and it's very difficult...It's like I don't know how to and when I do get REALLY nauseaus I get incredible anxiety and will do anything not to puke.. I swear.. I know it's stupid and when I tell people they say,.. OH MY GOSH.. you are SOOO LUCKY you havn't thrown up.. And I'm thinking.. NO... I wish I were like you and have thrown up and wasn't completely terrified of even the thought of it.. lol... I know that nobody likes to throw up.. but for me.. it's been life altering... (won't go on boats or rides for fear of motion sickness, stuff like that..)



It's amazing to me that I haven't been ill like that over the last 5 years having U/C, but I have Ulcerative Proctitis and nausea has never really been one of my major symptoms..... I feel like it's a curse that I got this disease and of all the diseases I could have why this one? One that effects the stomach and digestive system.. my biggest fear....lol....



OK.. Now what?? Do I just bite the bullet and pray for the best? Are there meds they can give me to prevent nausea to a point? I feel SOOO stupid posting this, but it is my main problem with having the surgery.. as dumb as it is.. and I know it is DUMB..
Posted 11/28/2009 1:34 AM (GMT -5)
well im glad the remicade worked for you! it worked for me right away too.
And it is better to have surgery when you are healthy much easier to heal. However be aware that remi can fail, and for me, when it failed, i went down hill fast. Maybe just keep having surgery sooner than a year in the back of your mind.
Im not sure why you think you would throw up after surgery. Some people do i guess, i didnt, i dont think. They can give you phenogren (sp?) or zophran or some of the other drugs to help you from feeling sick. And once you get some actual food in you it will help calm your stomach.
The worst part, really, is the gas that you get, and if you take some gasx before you get it its not as bad.
I threw up all the time with UC, and i have thrown up since (usually from a little too much jello, the grown up kind, lol) but i did have a stomach bug also.
Of course those things had nothign to do with the surgery.
Are you worried about the pain pills making you sick? If thats the case have them keep you on hte IV at the hospital, and send you home with some meds to help you not feel sick, and hopefully you wont need to be on the pain pills long. I took them for about a week when i got home then took them at night for another week then only rarely
When i was about 8 or 9, i got so terrfied of the thought of throwing up that i ate only crackers and baked potatos and drank only coke for almsot 2 years. So i understand what its like to hate to throw up. I was even to the point that if i threw up in a certain set of clothes, i would never wear them again, because i thought they were bad luck,lol. now thats silly! But i dont think you should be embarassed at all about it. Everybody has something they are scared of. Luckily i got over the fear and it doesnt bother me now.
Anyway, i always got off track.
just remember that surgey will make you healthy without the risk of drugs!
good luck!
Posted 11/28/2009 7:11 AM (GMT -5)
Hi Susiebuddy,

I've had a bit of surgery.. and every single time I violently throw up - it's awful.. and the scariest part of surgery for me. I've had 2 surgeries 8 months ago.. and FINALLY they were able to stop my throwing up! The anesthesiologist placed a patch behind my ear, and gave me Zofran. I never got sick.. first time in my life. I researched this before hand, and planned to ask for this mixture - but I didn't have to after speaking to the anesthesiologist.. it was what they suggested. I think the patch and Zofran is the key. Good luck!
Posted 11/28/2009 4:07 PM (GMT -5)
Sound like you guys didn't throw up during pregnancy. I didn't like it, but did I ever throw up. However, the results were blessed- three daughters.
Posted 11/28/2009 11:03 PM (GMT -5)
i did a few times, but i was lucky, my UC went into complete remission while i was pregnant, so i loved being pregnant!
But i found that, very oddly, pineapple juice kept me from feeling sick while i was pregnant
Posted 11/29/2009 1:26 AM (GMT -5)
haha... Ya, I never did.. I have't gotten sick since I was 8.... EWWWWW.... When I was pregnant I never felt better :)
Posted 11/29/2009 9:38 AM (GMT -5)
OMG, I am a emetophobic too. I am absolutely terrified of throwing up or even being around somebody else throwing up. I also get panicked if I feel like I am going to throw up. But, when I have any surgery, I get the patch behind the ear, a small cap full of some type of mixture, and zofran. My last 2 surgeries I did not throw up at all. I am also looking at another surgery and am terrified of having to have an NG tube. My surgery will probably be getting an ileostomy. YIKES, thought I was the only one that had this extreme fear of vomiting! Nice to meet you, Tracy
Posted 11/29/2009 3:23 PM (GMT -5)
Hi Tracy!

Yes, That is my ONLY concern about having my colon removed and getting an ileostomy.... the pain doesn't bother me because I know they can control it with meds... but the feeling sick part.. EEK! I swear, if it weren't for THAT... I'd schedule the surgery tomorow... As far as the NG tube.... that is actually a GOOD thing, because it keeps your stomach from filling up with bile, causing nausea... My girlfriend was just in the hospital for a restriction in her small intestine.. She has crohns and had her entire colon and 1/3 of her small intestine removed a while ago. Anyhow, as long as she had the NG tube in, she felt fine, (except for the sore throat from the tube) but when they clamped it off, (to see if she still had a restriction) She became nauseaus and started vomiting up bile again... as soon as they unclamped it, she felt fine again almost immediately.. so they went in and did surgery on her to get the restriction fixed.... She's fine now thank goodness... The whole thing freaks me out... I wish I could get over this IRRATIONAL fear.. Nice to meet you too!!
Posted 11/29/2009 9:19 PM (GMT -5)
well think of it this way
if you have the surgery and you get sick feeling, that will only last for a few days. And the meds will control it anyway.
AND you will be off the dangerous meds, and never have to do another prep for a scope again! that was worth the surgery for me. And all those foods you have marked off up there, you can eat them again! And not worry about bathrooms!
Posted 11/30/2009 1:32 AM (GMT -5)
Summerstorm.. you put it so nicely... I appreciate that!!! OH.. and not ever having to do a prep for a scope again... WOWIE.... forgot about that one! That in itself can be a very nauseating exprerience!! And you are right about the medicines... it's scary to be on anything that is potentially causing harm to your body, even though you need it to remain somewhat healthy... kind of like an oxy-moron... lol...

Well... I might be making my surgery decision sooner than originally planned.. I have been having what I thought was a complication from the Remicade, but it looks like I might have MS and have to quit Remicade altogether.... meaning my U/C will come back.. So, hopefully I'll find out before my next infusion is scheduled beause you can't take Remicade if you have MS... GOsh.... it just keeps gettin better and better.. !!!!
Posted 11/30/2009 9:38 AM (GMT -5)
im suprised that the pred hasnt made you sick, it made me feel awful. I dont see that you are on immuran or 6mp, which i was on and they made me feel sick all the time too.
Im sorry to hear you may have MS, when did they tell you that?
Posted 11/30/2009 7:31 PM (GMT -5)
Last week was when everyone suspected it.. I go in on Thursday for an MRI of my brain to see if there are any lesions.... Such a hassle... If it turns out that I do have MS.. I have to quit Remicade probably and will be scheduling my surgery very soon.. I'm so afraid my U/C will come back... GOSH... I'm sorta freaking out...Talk about feeling depressed.. I don't think I've ever been this messed up emotionaly... It's the not knowing that is really hard.. cause I can't make plans or go forward with anything.... If I could only have one more infusion.. that would get me off Steroids and give me 8 more weeks to prepart mentally for the surgery.... I'm just hatin life right now... Well not life in general..... just mine.. lol....
Posted 12/1/2009 1:16 PM (GMT -5)
I had the surgery, and never felt sick like you are saying. I had a bit of heartburn, but that was it, and they gave me something for that.
Posted 12/1/2009 7:38 PM (GMT -5)
oh you can also ask for protonix that will help with the nasuea too, and take gas-x as a preventive. that helps too
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