To be rejoined is the question??

Hi all, I had my surgery on June 30th, 2010, as I had suffered from Crohn's disease and UC since I was 15! But the only reason I had the surgery to remove the colon was because I had cancer within the large bowel. I am 22 years old, and that wasn't meant to happen to me, but anyway, the surgery had to be done emergency as I was very sick and couldn't wait any longer. I today met with my surgeon at SCGH in Perth, and we talked about the findings from the surgery as I hadn't spoken to anyone since my operation. Well, I have been given the option to be rejoined and create an internal pouch, but I have heard so many different opinions about being rejoined, and to be honest, my life doesn't depend on the toilet anymore; I'm happier and healthier. I have also done some research, and even my surgeon told me that being rejoined can reduce my chance of becoming pregnant in the future due to scarring inside; I also cannot give birth naturally. There are just so many factors, and I should really be thinking hard about this. I have been sick for 7 years, and I am finally better. Do I just jump at the first chance and have the rectum removed, or do I wait and dwell on it? Have a think about it? My husband is really supportive, and he knows that I want children, etc. My surgeon knows what my thoughts are and what I want to have done; I just want it removed. I don't want to look back on how sick I was. He even mentioned that we keep it there until I've had kids, then rejoin??? But I don't want that either... I don't like the feeling of needing the toilet when I know only a small amount of fluid is going to come out... I just want some of your experiences... My mind is made up, I think... I'm seeing him again in 3 months, and if we go ahead, then my surgery is before Christmas this year! I want to start a new life.......

Thanks, everyone :)
Wookie2005! xxx

Hi
I had an operation 6 weeks ago. I had most of my colon out but left in the rectum in case I should want to have the internal pouch. I don't really know what I will do but am leaning towards not having any more operations, especially since the internal pouch creates its own problems, and so far I am managing well as I am. But I don't see what the rush is to remove the rectum unless it is bothering you—you don't know how you will feel in the future.

Hi Wookie.... thought I would share some thoughts concerning your post.... I had my surgery a year ago and have been seriously contemplating the pros and cons of having my ileostomy reversed... the fact is though, once several months pass and the rectal discharges become less frequent (every 6-10 days for quite possibly) you come to realize that it's just mucus and no big deal. Also, you will get stronger over those months and find that living with the bag, while an inconvenience.... it's great to feel well and healthy... and you no doubt will be in time... be patient... Children... If they are important to you and your husband, then putting up with a bit of mucus discharge now and then is nothing to risk not having them around you in the future... look 5 to 10 years out... from your email I sense they are a core part of your life to be... you will see that how you feel currently will change as your strength improves... what I am saying is there is absolutely no rush in the short term to remove the rectum unless there is a cancer concern... a lot of wonderful things can happen in your life over the next few years... the success of reversals is quite difficult to predict, and the first 12 months are, as I understand it, can be rough and unpredictable... I suggest you take time to heal, gain physical and emotional strength, and see where your head and heart are in 6 to 8 months... the future will look brighter I expect... Good luck... and be PATIENT....
🔒 Login to see image

Hi: The above posts give excellent advice. You should consider waiting five or six months before making any final decision on further surgery, as your problems may improve. It will be a year on 8/20 since my colostomy, and I feel better and stronger every day. I am an older member and tend to be conservative. But good luck to you and your husband in increasing your family. CSC

Hi everyone.

Well, I met with my surgeon on Monday just gone for my post-operation appointment. Though all went well, he knew that my mind was set on having the rectum removed. He said there is no point in trying to make me change my mind, as he knows my devotion is to have a family, and if that means having the bag for life, so be it, I think. I am a young woman, and yes, time will pass and certain things will come up in life, and one day I'll tell my kids about the time I had growing up and all my health issues. At least I know what to look for when my kids start getting the slightest bit near what I was. I didn't know that I was this sick for about 2 years; I just got worse and worse. Eventually, my mum took me to the local hospital, and I was admitted straight away, and that was back in '05! Anyway, I am not seeing my surgeon again until November this year for my pre-operation appointment; therefore, we will see what else needs to be done. I know that the surgery is at the beginning of December, so it's a nice time for the weather getting warmer. I will also have a new niece, and it's Christmas, so I think it's best to have this whole year over with, and I can move on with life. Yes, the rectum is only discharging mucus now! But like I have said, I don't want the chance of cancer regrowing. Fair enough, the chance is slim to none, but I don't want that slight chance. I never thought I would be this young and to know I've survived cancer so far! I am getting better by the day, though I do need to slow down a bit; I've been doing too much thinking in Wonder Woman :)

Well, thanks everyone for your comments and input. As you can see, my mind is set! I'm loving life, and the stoma is great. I enjoy not being around a toilet all the time. I also have my mind set on removal, as I've read way too many stories about complications when it comes to rejoining! I think I'll have this one, then that's it! I'm done!

Thanks
Wookie2005!

Living with Your Ostomy | Hollister

Hi Perth
I just read your story since this is the first time back on this site since my surgery on May 6, 2010.
I too had my whole colon removed in 2002 because, like you, I was very sick. I had a temporary ileostomy done and also left my rectum intact to have the pelvic pouch procedure done. I also did not have to have my life revolve around the washroom, and for the first time in a long time, I felt great.
In 2004, I decided to have the reversal done, thinking how wonderful it would be not to have a colostomy bag. From the very beginning, I was having like 15 or more bowel movements per day and was not keeping any food in at all. I went down to 85 lbs and lived 80% of my time in the bathroom. In 2006, I had horrible pain and went to the hospital in an ambulance.
After a CT scan, they rushed me into surgery once again and discovered that there was a hole in the pouch, which, because of this, I had feces going through my body. This caused an abscess on one of my ovaries; therefore, they had to remove the ovary and repair the pouch, and once again, I had a "temporary ileostomy" as well as a fistula in my abdomen. I had infection leakage for 3 years. My surgeon tried every possible means to clear this up, but nothing worked.
So, after lots of battling back and forth, I decided to have surgery once again to remove the pelvic pouch on the inside and close the rectum, and I now have a permanent colostomy bag.
My recovery was from May 6th until the end of June, early July, but now I am doing wonderfully.
My weight is where it should be; I can travel, hang out with my kids, and pretty much eat anything.
Life is good. I don't know if this helps, but for me, it was the right decision, and like yourself, my husband is wonderful and very supportive. I wish you all the best.
Sincerely, Denise

Hi Denise,

Thank you for your input. It's stories like these that make me stop and think, do I really want to go through more surgeries? I know how much pain I was in when I woke up from having the colon removed! I want this one done, and that's it. I don't even want to try the pouch as I have a life again! I know each person reacts differently to surgeries, and I know that I have a VERY good doctor whom I trust very much. I just don't want there to be the slightest chance of anything happening to me! I am young, and I never got to experience teenhood or even the beginning of adulthood as I was too scared to go anywhere. The only thing I'm not liking at the moment is my rectum sometimes feels like it needs to poop! and I have a bit of fluid come out. It hurts like hell when it happens..... so I want that feeling to bugger off. Other than that, I am going well. I seem to be having some sort of reaction to my bags, though; the skin around the stoma is all red and itchy :( but I see my stoma nurse close to once per fortnight to make sure it's going okay... I seem to have a pain that sits in my belly as well. It's mainly on the right side just next to the stoma, but sometimes swaps to the left... Doctors in ED thought it was my liver playing up because it had something attacking it for so long.... but I don't think it is as it's too low for the liver. I also don't want to be sitting in the ED department for 10 hours while they figure it out!!!! I just want this next surgery to hurry up. I'm not sleeping at night. All this started before my first surgery, and because that was done as an emergency, it made my life easier. I just wish this one could be emergency!!!!!!

I'm glad that you're doing better, and yes, my time is now spent watching my niece and nephew grow up!
🔒 Login to see image


Brooke xxxx

Hi Wookie2005,

You certainly have my sympathy for all that you have gone through at such a young age.
I just wanted to tell you about my experience to see if it helps you with your decisions.
I had an ileostomy and my rectum and anus removed when I was 76 years old. I made this decision after suffering for 7 years with ulcerative colitis. I admit that I was afraid and confused at the time, but the only choice I had was to have the operation or die. Well, the choice seemed a no-brainer, so I opted for the operation.
I have to tell you that my quality of life has improved greatly since.

I hope all goes well with you.
You have my best wishes.

What a brave young lady you are! I'm considering having my rectum removed too (ileo in Dec 09) but just waiting for now. There was never a chance that I'd want a pouch ... they just didn't want me on the op table longer than absolutely necessary for the emerg surgery.

All the best to you.

Hi, you are a very brave young lady and have been through a lot.
I also want a reversal; I hate my stoma! But I don't know if I dare go through with it after complications before when they tried to reverse it.
I'm sure you will know what you need to do yourself when it comes round to making a decision about it. I hope all goes well for you, and best wishes for the future.
Crocus