Community Forum

Hello
Thank you for taking the time to read my post.  We were just informed today that my 14 year old may have to have a colonectomy.  Such a major decision at a young point in life.  We are looking for other's experiences.  Please share anything - pros, cons, advice, your experience, words of encouragement, etc...whatever.

 Reply posted for HopefulAngel.

Hi

     I am new to this site so I am hoping reading what you were replying maybe you would have some advice. I am 43 and have had crohns/colitis for 30 years and it is pretty severe my last colonoscopy showed some abnormal cells showing some dysplasia one high dyplasia so drs are wanting to remove my entire colon and give me a bag I am completly and absolutly terrified. I dont know if I am making the right decision and how do you know if the dr is a good one and what is life like with the bag mine will be irriversible and will it take the cramping and pain away,yo if you no longer have the urge to use the restroom what alerts you to empty the bag, can you swim, shower, how does it connect, I have so many questions . everytime I have had a procedure done I have had a life threatening problem follow not to mention that after 30 years of predisone I have no vein acess and have had picc lines and ports but the last port gave me endocardititis in my heart. so those are out of the question.... so any help would be appreciated.

 Reply posted for MomofMouse.

Hello,  As a parent of a 15 year old who had his colon removed in june 2010,  I can understand your fear.  My son had sever UC and for 8 months prior to surgery we tried all medications from steroids to remicade infusion treatments.  He was hospitalized many times for complications such as pancreatisis and needing blood transfusions due to the blood loss.  We came to the conclusion that surgery was the only option.  we are glad he did it.  He is doing great.  He is active and participating in life.  He is young and coping well, which I think is a great advantage.  Some advice, make sure you have a good surgeon who has experince with j- pouch technique and a specialist in colon and rectal sugery.  Good luck

Derek's mom

 Reply posted for MomofMouse.

Hello I am 26 years old and I had a colonectomy August 19 2009 and the reversal October 26 2009. I must say having this surgery has changed my life for the better!! I was very fortunate to have a wonderful surgeon. After the first surgery I had lots of stoma leakage issues only because he was unable to pull my stoma out so it was at skin level with my stomach rather then an inch out. Needless to say I pretty much stayed home the 2 and a half months til the second surgery. Thankfully I have a wonderful family that was there for me and very supportive and this is very important because having to go through this part of the surgery is not the easiest experience to go through without having a support system at all times. After the second surgery I has no incontinence what so ever which was one of the biggest fears I had. However I did find myself going to the bathroom 8 or more times a day leaving my behind quite raw but there is a great cream for it that works very well the only thing that works for me. The best part after surgery was actually being able to wait a longer time til I had to actually go to the bathroom which pre surgery when I had to go I had to go. I would say the first 2 months it took some getting used to with how many times I would go a day and A big problem I had was eating too fast which would cause me to cramp up really bad. I would highly recommend eating slowly and then that won't be a problem. So it's been One year today actually since the reversal and I must say I am doing GREAT!! I go to the bathroom probably 6 times or less a day, I feel 100times better then I did before surgery. I still have a bad day here and there but it's nothing like it used to be. No incontinence oh yes and the best part no more meds!! I do take imodium and lomotil here and there to help slow things down. If you have any questions I would love to answer them for you. I was just trying to give you my story in a nut shell.

 

 Reply posted for MomofMouse.

Hey there,

My name is Kim and I am 22 years old. I just finished up my series of surgeries. I feel so terrible that seems to be the only option left for your baby. Sometimes I wonder if my mother has suffered as much or more than I have through all of this. I only had Ulcerative Colitis for about 2 years but that was enough for me. Surgery was not easy but it was the best option and now I am really happy I decided to go through with it. The surgery they decided to perform was the j pouch procedure. I have been through both the laparoscopic and open surgeries due to a few complications I had after the initial removal of my colon. (Please note the complications I had were rare and only happen to .1% of people who undergo this surgery.) The laparoscopic surgery was more manageable than I expected and the scars were very small. I did feel pain with this surgery of course but it was also manageable and nowhere near as bad as having open surgery. Although I feel terrible to recommend that your child have to be faced with such a difficult decision I can honestly say I feel like a different and much happier person after surgery. I can swim, hike, and eat whatever I want. I have no urgency to go to the bathroom and although I still go many times a day it is all controllable. I don’t want to overwhelm you with too much information but I would be happy to answer any questions you have about my surgery. Everyone’s experience is different of course but I would try my best to give you the positive and negative parts of my experience.