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Posted 6/13/2010 1:06 AM (GMT 0)
     I am so much in the dark here.  My surgeon never explained to me what type of prep I have to do prior to surgery which is scheduled on June 28th.  I go for pre-op testing and meet with the ostomy nurse at the hospital on the 25th.  I was surprised that they don't even admit the day ahead of time and my surgery is scheduled for 7am!!!  I live in south Jersey and am having the surgery done in Philadelphia...ugh.

     Any info would be greatly appreciated.

Posted 6/13/2010 1:17 AM (GMT 0)
I can sense your anxiety, Christine ;) Trust me, it will all be ok. I wasn't told about my prep until a week prior. I pretty much had to do the same exact prep you would normally do for a colonoscopy. That is what I had to do, though he said he probably could have got away with not doing it because I was going to the bathroom like 20-25x / day. I was also admitted on the day of the surgery. It was at 9 and in Manhattan which was only like 30 mins away. If I were you, I would get a hotel or stay with a friend close by so you won't have any issue making it on time. 7 is pretty friggin early. If you are in the dark, call him. I email, and continue to email my surgeon like every other day. My 2nd surgery is going to be schedule around the same time as yours. I will be thinking of ya!! Try to stay calm, and just know that things are going to be a lot better!
Posted 6/13/2010 11:05 AM (GMT 0)
     Anthony...your condition was far worse than mine.  I only go about once or twice a day.  My main problem is the proctitis and prednisone dependency for the last year.  When I taper down to about 7.5 mgm the bleeding and urgency comes back.  Only when I wreak havoc with my diet, which I did a week ago, do I suffer going several times with urgency and cramping.  Other than the rectum, my colon is clear.  Really, really having second thoughts on this surgery.
Posted 6/13/2010 11:10 AM (GMT 0)
I got something in the mail with instructions from surgeon. It had the time that was scheduled for me to meet my primary to do the medical clearance appointment, the time for me to do the hospital pre-admission testing, and then the prep instructions. I had to take 2 antibiotics the day before surgery and then begin the prep, which was like a normal colonoscopy prep. I had to drink 2 bottles of magnesium citrate (I think that's what it's called) and take some pills. I preferred the Miralax/Dulcolax prep my regular GI does for colonoscopies, but oh well. I remember my regular pharmacy (Rite Aid) didn't have one of the antibiotics in stock so I had to find another pharmacy, but that was the only issue with that.

Christine, I know you are nervous and I certainly can't tell you what you should or should not do, but just a week ago you wanted to move the surgery closer because you were in such pain. Just don't forget those days when you make a decision.

If I were you, I'd stay in a hotel the night before and get there in the afternoon and relax and do the prep there. I had mine at a local hospital and it wasn't until afternoon, so I didn't need to worry about that.
Posted 6/13/2010 12:35 PM (GMT 0)
I believe at some point everyone has second, third, hell, I had 10 thoughts about not doing the surgery as it got closer. It is normal to think that way. I can guarantee that if you cancel it, and you start with all of the pain again you will be like why didn't I just do it. I was also prednisone dependent, and couldn't get below 20 mg. For some reason the Humira that I was using allowed me to get off of the pred. and allowed me to get around, but I still had problems. I can't be the one to tell you to do it or not, but I know deep down inside you do, because you wouldn't have scheduled the surgery for one thing and you wouldn't be this nervous asking all of these questions. Hang in there.
Posted 6/13/2010 12:50 PM (GMT 0)
I may have missed a post so I am not sure what your surgery will be...are they removing your rectum? With an End Colostomy?

Our bodies usually sense we are about to have surgery and decide to behave! Don't let that fool you, rectal disease is NO FUN, and you will feel so much better when it is done.

It sounds like you should call your docs office and ask what they plan for prep so you can put your mind at ease. It's usually the unknown that can give us anxiety:(

Most hospitals have you come in day of surgery unless you have other issues that have to be addressed. Can you get a hotel by the hospital so you have a easier commute that day?
Posted 6/13/2010 1:54 PM (GMT 0)
Christine,

As I have told you dozens of times, my colon was clear and it was only my rectum that was affected but my quality of life was so low (like yours) that I opted for surgery. You can pull out but do you really think your life is going to improve? You have been in misery for many months, do you think this will get better?

Sue
Posted 6/13/2010 2:30 PM (GMT 0)
     Sue....no...lol.  I don't think it will get better.  My husband said to stay the Hell off that ostomy board..lololol.  Such problems there.  In the past week I have spoken to three different people in my hometown who have friends with perm ileos.  They have told me their friends are doing terrific!!!  Going on cruises, vacationing in Europe...etc.  No one has even mentioned having blockages or problems with their bags.

     I decided to just stay home for the prep.  If I have to be at the hospital by 6am, we can leave at 5am.  We are only about a 20 min drive to the hospital and at that time of morning there shouldn't be any traffic.  When we went over to meet with the surgeon we took the High Speed Line over...but, of course, we won't be doing that.  Was wondering what I should take to the hospital with me?  Regular pj's? Underwear?  Of course I have to take my make-up...I never go anywhere without it...heheheh.

     The surgeon said the operation only takes about 2 hrs but wonder how long recovery is?  Guess it depends on whether there are complications?

      Sue...were you still on prednisone going into the operation and if so...how long were you on it?  That is a big concern of mine because I know the prednisone could cause some complications or hindrance of healing.  For the past two days my blood sugar has really gone up.  I purchased some sugar free items today...jello and such.  Urine glucose is back to negative this morning two hours after breakfast after registering a 4+ last night..whew.

Posted 6/13/2010 2:39 PM (GMT 0)
Oh, I like your husband!!

Don't bother taking sleepwear to the hospital; IVs and all don't work well in conventional clothing. You might want to pack a pair of sweatpants or loose fitting pants to go home in once released. The best thing you can do for yourself is to get out of bed the day after surgery and start walking. Walk every day in the hospital and continue when you get home.

Yes, I had been on prednisone for 2.5 years up until and through surgery. I was tapered off after my first surgery; I had 2 surgeries for the jpouch. It's not uncommon to be on this drug going in for surgery; thousands of us were prednisone dependent which is ultimately what led to surgery. Don't worry about healing; your surgery is fairly straight forward. You will do fine, really you will.

Sue
Posted 6/13/2010 2:55 PM (GMT 0)
Christine - I was one of those that had no prep other than no food after midnight. The nurse gave me a warm water enema when I got there and that was it. Maybe you won't have to go through the prep - but if you do remember that it's the last time! :) Make sure for the day you leave to go home that you have a pillow to put over your abs for the drive home. I never knew how bumpy some roads were until after surgery. Take lip gloss and if you have a favorite lotion take it too.

The closer I got to surgery the better I felt. I had to think back to all the things I had missed over the last 2 years and each time I was that much more positive that surgery was exactly what I wanted. Even after surgery 1 - I was ecstatic that I had done it. They say that you can feel that the disease is gone about a day after surgery...it was true!! Look forward to all of the things that you and DH will be able to do once this is over!!
Posted 6/14/2010 1:40 AM (GMT 0)
Christine!
You will be fine and will not regret your decision. Even after having had a blockage and another surgery this past week (RARE!!!), I still don't regret this. It will really give you your life back. I promise.

My surgery was rather last minute--met with the surgeon on a Monday and he squeezed me in for surgery on Thursday. I was so sick that i was going 25 times a day and not eating, so he didn't have me do any prep at all. I actually took Lomotil for the drive to the hospital, lol! I was on pred--40mg a day at that point. A few days after surgery my surgeon lowered me to 25 (!!!) and then went down 5mg a week after that, and now I'm med-free!!! :D

As for what to bring: I agree about bringing an outfit that's comfy to go home in. Is your surgery going to be laproscopic? Will you have a colostomy since your colon is ok, or an ileo? either way, your stomach will be a bit swollen, as will your stoma, and your incisions will be sore, so loose pants are good. :) You'll want to wear a hospital gown when yhou're there, but bring undies and comfy bras (I chose sports bras) to wear underneath. You may want to wear underwear that you don't care much about in case it gets anything on it.

My "must" list for the hospital:
chapstick
phone/charger
book to read
makeup (if you feel well enough to put it on, it is nice to have)
brush (again, if you feel up to it, it's nice to look somewhat functional)
toothbrush/toothpaste
lotion
laptop (sometimes)

They will sometimes give you a welcome thing full of a toothbrush, lotion, toothpaste, a comb, etc, but it's nice to have your own.

I had laproscopic surgery both times and was in the hospital for about 4 nights. You really will be fine! I'm thinking about you! Good luck on Tuesday. :)
Posted 6/14/2010 11:28 AM (GMT 0)
     Thanks.  Guess my main concern is being on this darn prednisone going into surgery.  Hopefully, I will be tapered down to at least 15 mgm or less...as long as I don't start flaring again.  Things are quieting down rectal wise.  I am carefully watching my diet and ate sugar free foods yesterday because my 2 hr blood sugar had gone over 200 and it was spilling into my urine.  Don't like that at all.  I finally got a full 7 hrs of sleep last night, thanks to Zolpidem.  That, in itself, makes one feel a lot better.  Hate feeling like a zombie.

     OHIO...I am having a perm. ileo.  I believe they take out the rectum and colon for that.  Wish I could just have this darn rectum removed but, of course, that is just not done.  My surgeon feels a lot better with this decision on my part instead of the j-pouch.  As a matter of fact, I don't believe he would even do a j-pouch on me, said i was too high of a risk.  He seemed much more confident with the perm ileo.  Apparently, it is a lot less stressful of an operation (not that any operation is stressless) for a woman my age and with my health issues, to go through.

      80's chick...I cannot imagine going 25 times a day!!!  See, when I read things like that, I think my condition is NOT that bad.  This morning I only went once...there was a bit of mucus but that I think was from the Canasa I inserted last night.  No urgency, formed stool and no pain or pressure.  Doing so much better since last Sunday.

Posted 6/14/2010 3:31 PM (GMT 0)
christine-your condtion is THAT bad, just in a different way! When you are steroid dependent its THAT bad! I know how it is when you get closer to try to talk yourself out of it, but you are doing the right thing! keep remembering that pro and con list!
No more diet problems, eat whatever, whenever! And have your LIFE back!!!
Posted 6/14/2010 6:44 PM (GMT 0)
     You mean I will be able to eat a salad again?  Thought lettuce was a no no.  I LOVE salads and cannot remember when I last ate one.  If not, it is still a small price to pay because we have a friend whose esophagus is full of scar tissue from cancer treatments he received twenty years ago and that poor man has had a feeding tube in his stomach for over a year and that is how he gets his nourishment.  If that wasn't enough for the poor soul to endure, he was diagnosed with colon cancer in February and had part of his colon removed.   God bless his heart,,,,he still goes camping and enjoys life.  So shame on me Christine for complaining that I cannot eat salad.
Posted 6/14/2010 7:10 PM (GMT 0)
Christine,
You will eventually be able to eat a salad, but definitely not at first. Things that are very high in fiber (like raw vegetables in salads) are likely to cause blockages, so you'll have to try it little by little, and possibly remove skins of tomatoes, etc. I had my surgery in March and havcen't tried yet, but I hope eventually I will :)

And as for whether or not you're "that bad"--well, that's a relative term. It's good that you have the perspective to think of your friend who has more problems than you do, but that doesn't mean that you shouldn't work towards beter health for yourself. I always used to think of myself as someone who had IBD but it was moderate or even mild. This past flare, that put me on pred for a year, etc, changed things a little, but I still kept that mentality. I think Suebear made a good point that you get used to your health and that becomes "normal" to you, and you start to accept being that sick. You dont' have to be going 25 times a day (I hope no one EVER waits until they're THAT sick) to do something about it. Even before my most recent flare, I was having symptoms similar to yours. I would usually only go in the mornings, anywhere from 1-4 times. Most of the time mushy or diarrhea, always with urgency. After the morning, I was good to go for the day. I considered that remission and felt like it was fine. It took me getting deathly ill to push me to surgery, and now I'm so thankful it came to taht, because now my life is even better than it was before this flare. I don't have to get up 3 hrs before I go somewhere. I can enjoy my mornings now. I can't believe I was going to settle and live like that. Surgery isn't as big of a deal as I thought, and I deserve to feel the best that I can. YOu do too!
Posted 6/14/2010 9:16 PM (GMT 0)
Hi Christine: best of luck w/the surgery. I had mine at 7am in Chicago in the middle of March - we drove into the city the night before because I wanted to make sure nothing kept me from my date with my surgeon!!
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