Ileostomy surgery set for March 1st

     Gotta just love these gloom and doom people .  Think to yourself...."How is the quality of my life now?  Do I have to keep running to the bathroom?  Am I in a lot of pain and discomfort?  How about all the drugs I am taking?  What are the long term effects going to have on my body?"  If you answer..."It sucks.  Yes, the port a pot is my closest friend.  I have bleeding and cramping most days.  I am taking tons of pills a day."  Then surgery is your answer.  No one can tell you what to do, this is YOUR decision.

     I suffered with ulcerative proctitis for twelve years.  My husband and daughter were my cheerleaders in addition to several people (suebear always comes to mind) in the forums.  They gave me wonderful support when I made the decision to have the surgery.  If you read my numerous past posts about all the meds I took, the bleeding, the cramping, basically not having much of a life, then you know why I made the decision for surgery.  Scared isn't the word for me pre surgery...I was downright PETRIFIED!  However, I found a great surgeon who is head of colorectal surgery at one of the best hospitals in the nation.  I am no spring chicken, 63 at time of surgery.  My surgeon would not do a j-pouch on me because he considered me high risk.  It was not a walk in the park.....but ooooooo....how wonderful I feel now.  Where I was taking anywhere from 17 - 25 pills daily plus rectal meds...I now only take one pill a day for my blood pressure.  Having an ileo, is not a problem at all.  I wear the same clothes as I wore before surgery.  Basically, I have my life back!!!!

     So don't listen to any ole fuddy duddy.  Sure there are people with problems, but you have to weigh the pros and cons.  To me, the pros far outweighed the cons and I have not one regret.

     God bless and think positive!!!  You will be fine!

Supernova, just remind yourself that you will need the surgery someday. It is much better to go into surgery in better health, and of your own choosing, than it ending up being emergency surgery and on deaths door. Recovery can be tough, but I remember once I was back home, feeling in heaven that I finally had a really good nights sleep, the first in years, and no more tons of drugs to take. (which were killing me). I know what you mean about second guessing yourself. I will feel better and think about postponing my j pouch removal surgery. But then I have to remind myself that this pouch is slowly killing me, and will have to come out if I am ever have my life back, and lead a normal life. Best wishes for you and we pray for your speedy recovery.

Even though I have had some problems over the 19 years since I first had my ileo at 20 yo and am currently having a few issues, at no time have I ever regretted having it done. If I still had my colon for the past 4 months I would only have seen the inside of the bathroom!

Even as I am currently emptying 20 times a day, CD flare up, it is still not the sudden urgency and pain of before I had the ileo. As soon as I came round from the first surgery I could feel the difference, it was total bliss.

Good luck and best wishes for the 1st.

If you're suffering.. believe me, it's the right thing. I was 20 years old and racing motocross, and wakeboarding every other day before I got my surgery, I am a VERY active 20 years old. The problem wass I had 3, 2 month flares that had me in the hospital losing 55 pounds each time.

The last one was the end of the line for me, went into surgery at 20 years old, woke up from surgery feeling like 8,000 pounds was just released off my shoulders.

Yeah it's something you have to get used to, I had the ostomy for 8 months and was living a completely normal life after about a month out of surgery, going out with my friends, eating whatever I wanted, and working 6 days a week... I just had my j pouch surgery last month and am doing grea. now back at work AGAIN and living a normal life, and ready to get back to motocross very soon.

If you are suffering... the best thing is to get that diseased part of your body OUT!

You've just made the hardest decision...the rest will be easier!

I was 30 when I had emergency surgery that resulted in a temporary ileostomy. It wasn't a year after the reversal that I elected to have #2. I lived with that ileo for almost 10 years when I decided to make mine permanent. I still had all the issues of my Crohn's during that time, I just wasn't running to the bathroom 100 times a day. #3 is with me forever and I am very thankful!

My quality of life is where it should be and my family isn't suffering along with me anymore!

Most people don't post on sites like this when they are out living life and you never know if the person next to you at any given time has one either...we wear normal clothes, go to the beach, dance at clubs...there's no difference

Talk to your doctor if you need something for the anxiety...you'll be okay and we are here to help with questions!

sending (((HUGS)))

I was very freaked out before surgery. My bp was very high because I was so nervous. It is super low now. The morning of the surgery I, too, was overcome with a peaceful feeling. I woke up from surgery very sick from the anesthesia, but very happy it was over. I thought I would never get used to my appliance, in fact I thought those that said they don't even notice it were lying through their teeth, lol. Anyway, I am now at 6 weeks post op and feel great and truly forget about it.

Why is that person saying not to get it?

Sending you hugs. It will be okay. For me, it was so worth it!

     Oh....I forgot to add...my surgeon didn't require me taking a prep before my operation.  Even his assistant was stunned.  All he told me to do was adhere to a clear liquid diet the day before surgery!!!  For good measure, I stuck to a clear liquid diet for two days before surgery..lol.  No problems at all!!!!  I was soooo glad not to have to take a prep .

i was 29 when i had surgery too! and i was worried and scared and came up with some of the dumbest reasons in the world to not go through with surgery! and you will probably come up with some weird stuff between now and then, just keep remembering why you are doing it! Find something that you can't do now that is important to you, that you will be able to do after surgery and keep focusing on that. For me, it's the crayon drawings on my shower wall that my then two year old son put there while he was having to play in the bathroom all the time while i was too sick. Kept me going, and keeps me going now, in the rare occasion that i think, ugh what the heck!!! In four years i have probably thought that, tops, 10 times.
and i promise it isn't horrible. I don't know what kind of stuff you like to do, but i can tell you what i like to do that i can with my ileo, going anywhere i want, clubs, cruises, shopping, out to eat, eating anything i want, wearing anything i want (except a bikini, but noone wants to see that anyway!) I now have enough energy to stay outside and clean up my yard. i can hang out in my pool for hours and not worry about having to run to the bathroom, i can use my hottub. i don't know if it's important to you, but alcohol is still ok, there really isn't anything you can't do. the only major thing that annoys me, is that i had to swtich to putting stuff in my left pocket instead of my right! because i'm bad to put anything and everything in my pockets and after i stuck a pair of earrings in my pocket right next to my bag, i decided that was bad! It's not a huge thing and i'm used to it now, it was just the only thing that really annoyed me. Now what a silly little thing, lol.
what im trying to tell you with that is, that's the only thing i can find that i don't like about having an ileo, out of all the things in my life, thats the only thing it affected!
about your prep, i've done those pills, and while they are better, they are not good. they are really salty or something, and don't take them with lemonade, big mistake on my part, lol. Just keep remembering when you are having to take them that it's the LAST time, ever!!!
good luck and ask anything you want!
Oh and very important, when you go to get marked, be sure you wear your normal clothes, so that you will have good placement, that's very important

     I thought it very odd that I didn't have to do a prep.  As a matter of fact, my surgeon's assistant told me I had to take the Miralax prep.  When I went in for my pre-op visit and blood work, EKG, etc (all was done four days prior to surgery), I just happened to ask my surgeon what prep he preferred me to take.  When he said...no prep, just clear liquid diet...I almost fainted!  But it was a "good" almost fainting feeling.  His assistant was there too and looked perplexed.  It was kinda scary.  I remember thinking.."geez, I hope this guy knows what he is talking about."  However, I had NO problems after surgery except when one of the resident's told me I could eat.  My body wasn't quite ready for that, especially the lemon cake...hehehe.   

     My surgeon also didn't sew my anus closed.  Guess he has his own methods.  I go for another follow up visit on the 8th of March.  My bone specialist (I have bad osteoporosis from years of prednisone use and three back fractures), wants me to have the Reclast injections.  I am going to run that by my surgeon and get his opinion.  I certainly don't want to suffer any more fractures.

Christine- Glad you are doing well after surgery, prep or no prep :) I know what you mean about the prednisone; I don't have osteoporosis yet, but I was scanned this year and I have thinning of the bones in my right hip. That is yet another plus of getting the ostomy; I would like to be able to walk down the street when I'm 80 and not break a bone. Reclast injections.. that sounds painful. I thought they had some medication that can help rebuild bone. I wish you luck with everything.
Belly pooper- Haha, Your screen name is great. When I was hospitalized back in Oct. I wanted my colon removed and spoke with the stoma nurse. But then I backed out of the surgery when I found out I had a cdiff infection. Thought I could go on the antibiotics and be fine.. hmm. didn't work out that way. She didn't really tell me which appliance would work best for me. I am supposed to meet with a stoma nurse again the morning of the surgery to pick the spot. I hope I will be able to concentrate enough to listen to her the day of the surgery. And I will definately get some samples, thanks!

ask them to mark your spot earlier, even ask them to let you wear a bag for a while to make sure its ina good spot.

Mine stoma site was also marked on the morning of the surgery but it did involve a long discussion and also moving around and sitting/standing up and bending over to ensure it was in right place. I am high waisted which could have caused problems if they weren't careful as waistbands don't take that into account and so can end up being sitting lower than my waist actually is, but thanks to surgeon careful checking it was sited perfectly.