I had my entire large bowel removed on the 30/06/2010, as an emergency surgery because I had massive internal bleeding and my bowel was about to explode. I had cancer within the large bowel as well. My surgeon didn't want to take the rectum out at the same time because he wanted to make sure that I really did have Crohn's disease and not UC. I have now been informed that it was UC and I can be rejoined. Do I want to be rejoined? To be honest, I don't; my life doesn't depend on a toilet anymore. I am the happiest I have been since I was 15; I have a life again. I hear there are complications when it comes to rejoining the rectum and small bowel, especially when I am young and want to start a family. The tubes can have scarring and things, and the one thing is you cannot give birth naturally; it has to be a C-section. Therefore, that means cutting through scar tissue, and recovery is longer, etc. I want to know if there is anyone out there who can talk to me about the rejoining situation. I am meeting my surgeon on the 16th of August; I will be asking him a lot of questions, but I want my life back. Crohn's/UC has run my life for 7 years. I didn't get to finish school as I was too sick. It's time for me to enjoy being young and plan my wedding and family. Hope to hear something. Thanks :)
RE: wookie-
Sounds like you have been through a lot. Try to stay strong and hopeful. If I were you, I would go to this surgeon's appointment prepared with your questions and bring a family member or friend that can support you. I would also, after your appointment, go for a second opinion if your insurance allows it. I myself have dealt with diverticulitis for 12 years and just recently, in March, had to have emergency surgery after my large bowel perforated. I have a colostomy and, due to complications, have not had the reversal done yet. It has been challenging dealing with having a stoma; it does change your lifestyle. I am going for several opinions to make sure I am making the right decision. Hang in there. I know it is tough. I also have a son who is 26 and has been sick with chronic pancreatitis for 7 years, and I know how much of an impact it has made on his life as well. How old are you, and are you from the States?
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About seven years ago, just about every aspect of my life was ostomy related. From the moment I was told an ostomy might be needed until some months down the road I existed as a person afflicted with a colostomy. I feared someone other than my immediate family might find out I had a bag. Ugh! What could be worse? Suppose it filled real fast when I was out with no place to hide and take care of myself. God forbid should it leak in church! Suppose I roll over on it in bed. I was a lesser creature, destined to a life of emotional anguish and physical routines different from most of the rest of the world. I felt like a freak. Then I found folks like you guys here, read your stuff, really “listened” to what you had to say and I began looking at things differently. We know perception is everything and I began to understand how good things were relative to what they could’ve been. So many folks had it so much worse than I did. That didn’t make my discomfort go away but it exposed how fortunate I was to be dealing with my stuff and not their’s. I felt a little guilt, maybe selfishness but quickly forgave myself by understanding I just wasn’t smart enough to fix my feelings. Then, I wonder what smarts have to do with feelings. My perception was warped so my perspective toward my existence was warped.
I learned over the last few years with the help of lots of folks right here at MAO that I could be better at living just by accepting some facts. It is what it is and so what? It’s not the worst thing to happen to a person.
I think everything is, in some way, related to everything else. I just put the ostomy thing in the back seat and drive forward.
Respectfully,
Mike
RE: SheliaBaby,
I read your profile, and it sounds like we have a lot in common. I am currently not a full member, and I am only allowed to post blogs. What is your story? It sounds like you are dealing with this situation well. I am 45 y/o with a supportive family as well, and they have been great, but even though I am going on with my life with work and everything else, having a stoma has definitely impacted my life with challenges, not to mention my body image issues. Are you experiencing any of these things, and how are you handling them? Sassy
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Hi there.
Yes, I have been through a lot, and only people on this site can really understand how much it all tires us out. Don't get me wrong; I am grateful that I am alive and I am going to be okay, but I wasn't for so many years. I grew up and didn't notice. I am 22 years old and found out the week after my birthday that I had cancer :( not something I wanted to hear, nor did I want to have the surgery in the beginning, but now I am glad I have. I haven't had any complications as yet (touch wood), and I am looking forward to meeting with my surgeon to put my mind at ease. Yes, I'll be taking my fiancé with me to that appointment; he actually comes to them all, even just the local GP. As for second opinions, it's a bit hard as I'm in Western Australia (Perth), and I'm a public patient (Government-funded health system - Medicare) covering the costs for all my appointments. Even my surgery was covered, but I was also at the best hospital within Perth for the public system yet again. So I know I have done well, and he is also the top guy who I had operate on me, which makes me feel better as well. That's not good about the bowel; mine almost did, and OMG, it was just so painful. I really thought I was just getting my normal monthly period as it was just within the next few days. NO, it wasn't :( for once, I was really wanting it that month, lol. As for me, I only have normal access; I need to upgrade, then I can chat to others as well and get a feel of what people have been through.
Hi Wookie 2005
I've had Crohn's and UC for 30 years and 4 surgeries. The first surgery was to remove my large bowel and create an ileostomy at 19 years. 9 months later, I had it rejoined. Looking back now, it was the worst thing I could have done—20 years of hell. Then my bowel had blocked where the join was, and I had more surgery. I had a loop ileostomy put in just above the join to rest everything below it. Still having a lot of pain, 12 months later, I saw my surgeon and asked if I could have my rectum removed and have a permanent ileostomy put in, which is a fairly big surgery, and he agreed. I was so happy! I had the surgery in 2002. The best thing I think I have ever done; it's the best I have felt in 30 years. I work full time as a cleaner and play hockey twice a week—no more looking for toilets every 5 minutes. Hope you make the right decision, Poppie.
My Ostomy Journey: Jearlean | Hollister
One thing I forgot to tell you from my experience was you have no control over your bowel at all, day or night. Some nights I would go 2 or 3 times if you wake up in time because you have no large bowel; you have nowhere to store anything. I am not trying to scare you; ask lots of questions, Poppie.
Hi Poppie,
Thanks for sharing your story with me. That's one of the main reasons I don't want to be rejoined, as like you said, you have no control over needing the toilet, and it will be just the same as when I had Crohn's and UC. Now, with having an ileostomy, I have a life again. I have been unwell since 2003; I was 15 then! My life doesn't revolve around having a toilet near me. I can go out and do things, go camping where I don't have a toilet, etc.... Plus, I've heard a few other horror stories about rejoining, and I want kids, so I think it's not going to happen. I will speak with my surgeon, but I think my mind is fully made up! :) Wookie2005!