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Nervous about my Total Colectomy!!! Any Advice

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Posted 3/8/2014 1:21 AM (GMT 0)
I'm 18 years old almost 19 living with colonic inertia. I have been living with severe constapation since I can remember. I currently am out of school due to being sick all the time from this. Taking a handful of laxatives doesnt nessecarily help with the pain either because of the horrible cramping they cause not to mention having to keep uping my dosage once my body becomes immune to the amount I take. I have had many tests including the marker test which 5 days later they were all still in my colon. and also a colonoscopy. The doctors cant quite understand why such a young girl is having such severe constapastion issues but neither can I. I have been from doctor to doctor and from colon and rectal specialist to etc. I had the choice of getting a total colectomy. where the take out the entire colon and hook the small intestine to the rectum. I passed and decided to keep taking laxatives and seeing doctors and surgeons. Most which have told me about this surgery. After two years of waiting I decided to have the surgery. The long term effects of laxatives seemed to be pretty bad. I knew eventually I'd end up having to have this surgery if not something worse. So my surgery date is scheduled for March 20th. I am VERY nervous. I have never had a major surgery done like this before! please if anyone has any advice I would love to hear! Thanks!!
Posted 3/8/2014 5:42 PM (GMT 0)
Feel a bit bad you didn't get any replies. I had my colectomy done for Crohn's, so I can't help much. Was originally thinking of having my ileum hooked to the rectum, like you will have done, but there's just too much risk of the Crohn's returning, so I probably won't do it. With no history of IBD, you won't have that worry. As far as I know, this particular operation usually works quite well for those who have it done to cure colonic inertia. Best of luck.
Posted 3/8/2014 11:09 PM (GMT 0)
Thank you for replying! Hearing that it usually works well helps! Thank you(:
Posted 3/8/2014 11:10 PM (GMT 0)
Thank you for replying! Hearing that it usually works well helps! Thank you(:
Posted 3/9/2014 8:16 PM (GMT 0)
I've just had the first step of a J-pouch, which basically leaves me in the position you'll be in. It was my first major surgery and I'll admit I was concerned but happy to finally be rid of Ulcerative Colitis. It wasn't nearly as bad after the surgery as I thought it might be.

It's definitely seems to be one of the surgeries that is done often enough that it's fairly straight forward. Hopefully you've got a good surgeon doing it.

Good luck and don't worry about it, hope for the best!
Posted 3/9/2014 9:10 PM (GMT 0)
Hi hickchick - yes, you have been through a lot and I can definitely understand how nervous you are. I was 15 when I had my colon removed (ulcerative colitis) and I was worried about how the surgery would affect my life - after suffering all one desires is for surgery to be a success and to be left in a better state of health than before surgery.

I can tell you that the recovery will be quite the journey, but well worth it for you. It's time you took back your life and your health.

Where are you living? Do you have a good hospital and an even better surgeon? You may not want to name names, but someone here might have had surgery where you are considering having it and be able to offer more advice.

Hugs to you, and best of luck.
Posted 3/10/2014 2:31 AM (GMT 0)
Thank y'all! I know my surgeon said the success rate for the surgery is 80%. So that's pretty good! An Im having my surgery at johns creek Emory in Georgia! Talking to others who have had this surgery is so relieving. Nobody else I know can understand my lifestyle having to live with this or has been through this surgery
Posted 3/11/2014 1:46 PM (GMT 0)
I feel for you!!! I have been dealing with the same thing.. It's good to hear there are other people out there. I was in the same boat, I am holding off on the surgery taking handfuls of medications and constantly changing the dose.. It just doesn't work. I would love to hear how the surgery goes for you as I am trying to put it off until after having children but am not sure I can wait that long.

Best of luck!!!!
Posted 3/12/2014 2:48 AM (GMT 0)
Jwaht. I would love to be able to wait till after I have kids one day but I've read some of the long term effects of laxatives an pelvic floor problems is one of them. I figured the long term effects would be way worse plus im young an can heal faster than older men and women. Also I have read of people who still had children after this surgery . So im hopeful that one day I'll still have kids. (: but I'll definitely update after my surgery to let you know how it all turns out.
Posted 3/15/2014 5:43 PM (GMT 0)
Hickchick - I had my surgery for colonic inertia in March 2007 at age 56. I have never regretted my decision. I suffered for approximately 23 years. The doctor connected my small to the rectum. At first I went to the BR 20 plus time a day but it has settled to approximately 3-6 times - sometimes less - sometimes more. I didn't have any complications from the surgery.
I took every med under the sun - OTC, prescriptions, colonics, chiropractic, acupuncture, enemas, etc, etc, etc., after awhile nothing worked.
I wish you the best with your surgery.
Posted 3/15/2014 11:47 PM (GMT 0)
Resa thank you ! Knowing that the surgery has worked for others an had no complications makes me feel so much better. I'm still nervous but I'm sure anyone who has to go through something like this would be. Thank you again !(:
Posted 3/17/2014 4:12 AM (GMT 0)
Hello Hickchick,
I had my colon and part of the rectum removed in April of last year. My choices were total colectomy and ileostomy for life or colectomy and J-Pouch procedure. I was looking to get to as close to normal s possible and interviewed three different surgeons before making a final decision. Surgery was performed at Piedmont Atlanta by an extremely well written and respected surgeon.
I'll be honest and tell you that I had an unfortunate complication that took quite some time to recover from. It was rough. HOWEVER, I'm the one in very few. Sometimes things happen BUT I'm here today and proud to say that I just wrapped up my ostomy take down!. I kept my head up and looked forward and remained positive. That's what it's all about.
Any major surgery is scary and you have the right to be nervous. But remember this, you're gonna be fine. Keep positive (it heals), put your faith and trust where is should be, let that worry go. You'll be happy and feeling better in no time young lady.
Best wishes and you're in my prayers.
Posted 3/18/2014 2:36 AM (GMT 0)
Hi hickchick,
im 30 and am having the same surgery though I find out this Wednesday the date. I understand your nervousness and hope what I tell you helps. When I was 19 I was sent to a surgeon for constipation after having a gi bleed and being very sick and I didnt do surgery. At 24 I was sent again and still wasnt ready. Now im 30 and laxitives dont work. I have to take golyte bowel prep every single week and have been for months. Had I know the problems I would have I would have done the surgery years ago. Now my surgery date cant come fast enough. We drew tbe short straw with this disorder but I hope surgery will give us our quality of life back! Good luck and I hope it all goes smoothly. Are you having just the one surgery or the 2 part surgery?
Posted 4/6/2014 5:37 AM (GMT 0)
Sorry it has taken me a while to comment back. My surgery went well. Although I did have to stay in the hospital longer than expected because I got very sick from my bowels not waking up. Good news is me getting sick causedy bowels to wake up! Its been almost 3 weeks since surgery and I still have some pain which is normal and I sleep a Iot. I absolutely dreaded walking at first, but it helps so very much. Unfortunately I have been suffering a little from post surgery depression. Im guessing it's from being stuck inside alone. Km not really sure but I'm very ready for it to be over with. Also today was the first time i actually got dressed for the day. The down side to is that I still have issues with eating solid foods so I can't eat much and I have lost over 20 pounds in a Matter of a few weeks. I don't have much energy. But I still am very glad I got this surgery. Being able to go to the restroom without the pain of laxatives is wonderful! The recovery is just very slow. Atleast for me it is.
Posted 4/6/2014 5:39 AM (GMT 0)
An I only had to have this one surgery. They removed my entire colon an attached the small intestine to the rectum so no bag or anything for me.
Posted 4/7/2014 10:42 PM (GMT 0)
Am due for my colectomy in one week ,have had my colon out and live with "the bag" since 2001. Started rectal bleeding last year and told the rest has to come out, so yes like you I'm a little anxious about the surgery. Two previous surgeries for scar tissue just add to anxiety. Glad to hear you got thru the surgery, now give yourself time to recover, it's a long process.Drinks like Boost are good if you have trouble with solid food ,also smoothies if you can make or buy them.
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