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25 yr old and having colectomy and ileostomy done end of month

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Posted 10/1/2010 11:14 PM (GMT 0)
I have been putting this off for some time now and been living with extreme pain and discomfort from reoccurring fistulas which tract through my colon...to...urethra..to...prostate...to..epidydimis ...causing a whole handful of problems down there...spoke with my dr yesterday and we have decided to go thru with colon removal and ileostomy bag.....lookinng for pol whom have had this done...what kind of recovery time...pain I should expect...stuff like that...I'm only 25...so this is kind of a hard life decision for me...thank you all

Any information about healing time and things to expect would be greatly appreciated
Posted 10/2/2010 12:11 AM (GMT 0)
Welcome Curt,

I went through the same pain with Crohn's fistulas and put off surgery for 7 years, but I've got to tell you, life is so much better now! I truly wish I would have known how great I would feel, because I would have done it years earlier. Plus, the pouch is so easy, and nobody can tell that I have one.

The surgery I had was a proctocolectomy (they removed my colon and rectum), and it was done as an open surgery (not laproscopic). The initial post surgery pain was intense, but I had a morphine pain pump, which became my best friend! LOL

I was only in the hospital for 4 days, and the incision was sore for a few weeks, but it wasn't so painful that a few pain pills didn't take care of it. I was out driving and grocery shopping two weeks after surgery, so it wasn't nearly as bad as I thought it was going to be. I took two months off work, just because I wanted to, not because I had to! smilewinkgrin

The best part was knowing the day after surgery that the disease was gone. It was the best feeling in the world! Plus, you will get your energy back and will get to feel like a 25 year old is supposed to feel like. I felt 80 before surgery, which I had when I was 35, and now I feel 25 again!

The other good part is no more fistulas, or medications, or even doctor visits (once you get through your initial surgery ones). You can be healthy again and get on with your life! :-)

I hope that helped answer some of your questions. If you have any others, just ask. We're all here to help!

Cecilia
Posted 10/2/2010 2:59 PM (GMT 0)
I was a little older when I had my protocolectomy so my recovery was a little longer than flchurchlady's. I'd had many surgeries and I really thought I'd bounce back in a few weeks but it just took a little longer for me.

I had too many perianal fistulas that stopped responding to medications (had a temp ileo for 8+ years) and the pain/discomfort was worse than I thought at the time. I couldn't believe that once I got through the surgical recovery how good I felt! The surgical pain was never more than what my pain meds could handle...which is a good thing!!!

I was 30 when I had my first ileo (emergency) and have to say it's not the way we think of going through life...but it is way better than no quality of life because of our diseases...and like flchurchlady said no one knows you have one unless you tell them.

Can your doctor connect you with someone who has an ostomy? Sometimes that visual and one on one conversation is more powerful than other means...I volunteer with post-op patients and they would have never guessed that I was a patient, too, until I tell them. Their questions are usually about clothes, swimming and what they can eat...pretty much the ones I had but had no one to talk to (which I why I love this forum)!

As a young person there isn't anything that an ostomy will keep you from doing. In fact, you'll be more thankful for your quality of life than the average person, and may even find yourself doing things you wouldn't have done before your ostomy, because you CAN.

Good luck with your surgery and please let us know if you have any specific questions.
Posted 10/2/2010 4:57 PM (GMT 0)
I just want to wish you well, as a 25 year old as well that just had a partial colectomy I understand how hard it is to deal with. My surgery was an emergency; my colon perforated and had spread icky stuff and infection throughout my abdomen and it was either have it removed or, well, die. So obviously i said heck yeah take it out! I'm only 3 weeks post op and already not dealing with all the diarrhea and bowel pain is great. I still have post op pain but I know it won't last. I am still dealing with some depression from the change of my body image and just general "life is going to be different" stuff but I know that will fade with time. My bag isn't permanent though so I have a different future perspective then you will. From everything I hear and read though you won't regret it. So many people are like, wow why didn't i do this earlier!? I can only hope you feel the same way once your surgery is over and you are able to live life to the fullest. Best of luck!!
Posted 10/2/2010 7:08 PM (GMT 0)
     I was 63 when I had my total colectomy and permanent ileo.  I suffered with ulcerative proctitis for twelve years prior and became prednisone dependent.  My hospital stay was 11 days because I had a few complications....ate too soon and threw it all up, so they had to put an NG tube down me for a few days and just when I was starting to feel better, ran a fever of 105 and BP of 70/40.  Never saw doctors work so fast on a patient in my life, CT scans, blood cultures, the whole nine yards.  Guess what...the next morning I felt fine....no temp, normal BP, weird.  They never did figure out the problem because all the tests came out fine!  Anyway, surgery was on June 28th.  The surgeon left my anus intact because he said that there are more complications when people have them sewn shut.  He had to drain an abscess from my anus about a month ago and I think it is back rolleyes .  BUT...in the long run, this too shall pass and I can say even with all I went through...it is still better than suffering with the ulcerative proctitis.
Posted 10/3/2010 2:16 AM (GMT 0)
I had a proctocolectomy done colon, rectum and anus removed due to crohns/colitis at the age of 46 after struggling with this disease for more than 22 years. My surgery ended up being emergency so I didn't really have a lot of time to get my head around it but now I couldn't be happier for my quality of life and yes having a pouch can sometimes be trying but it sure is better than the pain and isolation this disease caused for me, as I couldn't leave the house cause I kept losing control of my bowel. Recovery for me took probably about 3 months, my surgery was done laproscopic and had a few little hiccups but all up I am very happy now. Take care and hope all goes well for you, don't push yourself, everyone is different. Keep us posted :-)
Posted 10/3/2010 3:34 AM (GMT 0)
i was 29 when i had surgery, and it was a scary thought, but life is so much better! i missed all my 20's with that stupid colon!
and now i do all the fun stuff i should have done then!


i was in the hosptial for about a week, then it was about two weeks after that before i felt like doing much, although i was off the pain killers a week after coming home.
And i was eating fairly regular food, the first 6 weeks you have to kind of be careful, but after that whatever is fine, just be careful with things like nuts and popcorn.
I dont know what kind of job you have, but for the first six weeks you have a limit on how much you can lift, and then you need to take it slow after that for a while. Don't be lifting a tv two months after surgery, lol.
You will feel better right after surgery though, just keep in mind as you get closer all the things that are hurting you and that you are missing out on now, and that will help you get through!

good luck!

Post Edited (summerstorm) : 10/2/2010 9:38:45 PM (GMT-6)

Posted 10/4/2010 7:54 PM (GMT 0)
I missed out on my 20's being sick with Crohn's. I had my colostomy and rectum removal last Nov. I was 32. I should have done it at 22.
Recovery time is different for every person, I was out of the hospital in 9 days (reaction to blood transfusion) and hit up a Christmas party 4 day's later. In fact because it was the holiday's I was out all the time! Imagine my surprise when I could leave the house in 20 minutes rather then 2 hours.
I do everything, I race cars, ride motorcycles, own an automotive repair shop, run, do yoga, roller derby, swim, dive, and every other thing you could possibly imagine. Go for it, you won't be sorry you did.

-Allie
Posted 10/4/2010 10:34 PM (GMT 0)
I've had my ileo since I was 10 years old. You're never too young nor too old to have one (I know people who've had a bag since birth) as long as it makes you feel better :) I've never regretted my parents' decision to let me have surgery.

I'm about to hop on a plane to go home after a few days holiday now and have been able to enjoy my time away because of my bag.

Good luck and keep coming here for support - we know what you're going through.
Posted 10/5/2010 12:46 AM (GMT 0)
Hello and I'm sorry you've been dealing with so much. :(

We all know how it is, that's for sure. I, like many, was really sick with Crohn's for about 10 years before my surgery in March (I was 28). I lived with diarrhea EVERY DAY for TEN YEARS!! What in the world was stopping me, I wonder now! Life is TEN THOUSAND times better for me now than it was when I was sick. I HAVE a life now. It doesn't revolve around diarrhea.

I was in the hospital about 5 days and then was home from work for about a month. SO WORTH IT. Let me know if you have more questions--any of us would be happy to answer.

Posted 10/6/2010 3:14 AM (GMT 0)
I never had any bowel problems but woke up with a permanent ileostomy because I had UC due to a long course with an antibiotic after back surgery and a wound that wouldn't heal. My experience is a little different than others who suffered with IBS or UC for years. I had to really work to get used to my ostomy but told myself that if it weren't for it I wouldn't be here today. I had a 66% chance of living if they did surgery and a 0% chance if I didn't. I was out of it so my husband and kids decided they wanted me to be here a bit longer. Kind of glad they did!! LOL
Posted 10/7/2010 3:02 AM (GMT 0)
Hey Curt! I'm 19 and just had a colectomy and ileostomy about 5 weeks ago.

The surgery lasted about 3 hours. The incision site hurt afterward, but you'll be on a steady dose of pain meds, so I wouldn't worry so much about that. I was in the hospital for about 10 days, but that was only because a complication with my stitching...without that, I was going to be able to leave after about 3 or 4 days. You probably won't feel like eating for a couple days, and for me it was hard to walk and stand up straight for a little while...my nurses really encouraged me to walk and sit up in chairs as much as I could though. I was sent home with just antibiotics, but not any pain meds; I didn't even need them by then.

The first couple weeks after the surgery are the hardest, but, like most everyone else already said, you'll start feeling a hell of a lot better. It's like I don't even have Crohn's anymore; I'm eating foods that I couldn't before and I never have to worry about stomach aches or gas or anything. And as far as the ostomy goes- I mean, I'm young too, in college, so I was definitely not looking forward to that, but it's honestly not as bad as I thought it would be. It becomes so routine, and it's easy to take care of and to conceal. There will be a few dietary restrictions for the first few weeks (like no seeds or nuts) and you'll have to stay really hydrated so you don't cause blockage, but that's about it.

Hope this helped ease your anxiety a little bit, good luck with everything!

Madeline
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