What am I in for with a total colectomy?

In this discussion
Replies
28
Views
19836
tarababy

Hi guys, well the latest here with me is...my next operation (whenever that will be, a long way off hopefully) will be a total colectomy from the Crohn's. As yet the docs haven't explained much. I thought getting this was hard, so I'm looking for people's opinions on how it went for them. I'm in better health than I was when this happened, so that should be a bonus. Any hints on how to learn to accept it when it does happen??? As putting it politely...it's scaring the hell out of me. Thanks...Tara

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,089 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Belinda

Hi Tara. What ops have you had before? I've had a total colectomy and now have a permanent ileostomy. Mine was for UC. Ask anything you want. How's winter in Cairns? Luv, Belinda.

Gray Logo for MeetAnOstoMate
tarababy
Hi Belinda, how are you doing, girl?... Ok, operations.... Well, since I was 17, they have been taking bits of the small bowel. Three ops in about 5 years back in the 80's. Then 4 years back, they took the rest of the small bowel. Mind you, the second op I had, they told me it was the appendix, yeah right. That's why I woke up with the same pain. Bloody idiots. So, the colon and large bowel are left now. Fortunately, from the bum up.... 12 inches or so are not affected yet. But from the top down.... about 3/4 of it is affected. Explains the feelings I have been getting lately. Deja vu all over again but not as bad yet. I was told in the beginning that the pills I'm on would keep it away... not so... just keeps the flare-ups from happening it seems.
Belinda, I'm not sure what questions to ask..... All I do know is they are not giving me one bum... sorry, only way I know how to put it. Not for any perverted reason or anything... But I just don't want to go there. To me, that will at least make me feel as normal as possible... know what I mean? Or is it just my mentality? Ok, maybe we shouldn't look for that answer... lmao.
As far as the winter in Cairns goes?.. Been bloody cold, thanks... Got the flu twice in 8 weeks. But it's only cold till the sun comes up. Lol. I'm up and going to work at 5 am. Won't be long now and the heat will be back.... Then I start to suffer all over again. Came here for the humidity, now it just about kills me. You will know the locals if you ever got here.... we are the ones wearing the jackets and jumpers. (And no, I don't complain all the time about the weather... got better things to do).
Anyway, Belinda, hope you're doing well and thanks for replying.... Thought that nobody out there had had a total colectomy.... again... yeah right! Cheers, Belinda. Take care... Tara xx
Belinda

Tara - Bloody cold here too, and wet wet wet and it's supposed to be summer here! Had all of colon removed because of UC four years ago but they wouldn't remove rectum because of possible nerve damage due to existing MS. Pity as 3 months later I nearly bled to death due to rectal stump misbehaving and had to have rectum removed after all. So now have no colon and bum is sewn up - so don't call me an a***hole. Obviously ileo is permanent, but used to that now. No longer chance of bowel cancer, appendicitis or piles!! And NO MORE COLONOSCOPIES. Seriously though I don't miss my bum at all. It caused such a nightmare time with the UC that I was actually very glad to see the back of it. Bums are seriously over-rated in my opinion. There should be a law against them. Take care and keep smiling. Belinda xxx

erika

Hi Belinda, it seems we always miss each other when I'm online and you're off, and vice versa. I hope you're keeping okay in Scarborough. I still have my rectum, but most days I pass stuff from it. I don't know if anyone else does. Next time I notice you online, I will enter chat and we can catch up. Bye for now.

 
How to Manage Emotions with LeeAnne Hayden | Hollister
tarababy
Hi ladies, aren't you a funny one, Belinda...thanks, I like it when people make light of the conversation...puts me at ease a little. But yes, I still pass mucus through the back end. It is the only thing that keeps me thinking all is normal. Now, isn't that just silly.
Well, I have seen my GP now and put something to him yesterday...what if I wasn't to wait till this made me really sick to have the op? Wouldn't I have better chances to get through the op if well and healthy? And the chances of saving the bum are better now than it will be in 12 months' time maybe. He says that's a smarter move than waiting....so now just waiting to speak to the specialist in 3 months to see what he thinks. I would rather face this now while well, then try and go through it sick as a dog.
But it's all I'm thinking about these days, so I need to sort it out. It has helped to talk about it with you guys too, so thanks. Maybe if I do this, I can finally get on with my life and stop worrying when the disease will come back....Ok, I will keep you informed on how things go...Thanks again, Belinda...Erika......
meglb

Hi there, Tara. I had a similar situation. Did I want surgery now or later? I opted for sooner. I'm an impatient person and like to get things out of the way! Tough decision either way. It's good to know that in the end (no pun intended), you will feel better after the surgery and can get on with your life. Good luck whatever you decide.

tarababy

Would like to say thanks for the words of encouragement. And yep, a huge decision. Being a bit like you, Meg, I'd like to be seeing the other side of this operation already. So, going to be a long wait to get back and see the specialist. Don't think I want to give this the chance to put me through hell again. Ok later ladies, take it easy and chat soon... Tara...

bamatex
Hi Tara, my story is that I suffered with UC for 3 1/2 years before being told I was out of options. The only way to have anything near a normal, pain-free life was to have the surgery. One of my docs had been asking me why I didn't go ahead and have my colon removed for over 2 years. The best reason I can remember as to why I didn't have the surgery sooner rather than later is that I kept, mistakenly, hoping that somehow a new treatment or even a cure would be found. Of course, that didn't happen, so I suffered on for way longer than I should have. I went through the heavy steroids, even Remicade, with diminishing results, then finally had the surgery. If I had it to do over again, I would have had the surgery much earlier than I did. Incidentally, I kept my rectum in case I wanted to have the reconnection surgery at a later date. I pass mucus most days, some days heavier than others.

It's a difficult decision that only you can make. I wouldn't hold out for a cure or a miraculous new treatment, there's just comparatively very little research being done on UC and Crohn's. Good luck.
tarababy
Hi ladies, well I got back to the specialist 2 months earlier than first planned. I pushed in front. And, well, in about 20 minutes he had me in tears. All my good planning and questions and state of mind went out the window.
To start with... I got one of the locums (trainees) and it is written on my files in big red letters that I insist I see who I am meant to see (and my files have their own wheelbarrow). The one person all the time... I'll be buggered if I'm going to sit there (after waiting 3 hours) for half an hour while she reads up on me, while asking how I'm feeling. I told her I needed to speak to the doc as I had a question I needed to put to him... 10 minutes later THEY come in... I say that my GP and I think it's a better idea to have this operation as soon as possible, while I'm fit and healthy... and mentally willing. Hell no! He wants to throw more pills down my throat... lots of things to try before the operation... I lost it, I'm like, "So you're just going to sit back and let it take over AGAIN? And ruin my life... have me too sick to be operated on?" "Oh no, we won't do that, keep a closer eye on you." So, yeah, not at all impressed. Supposed to be getting a second opinion, that he is organizing. Also speaking to a surgeon (that he is organizing) to see if they think it's viable or not... But he thinks what he said appeased me... Hell no!! And when I told of an ostomate I knew who had had the same op, well... wasn't the answer I was hoping or expecting...
Thanks for your replies ladies and will keep you informed at how it all goes. Cheers for now, Tara.
meglb

Hi Tara - I've had a similar situation - I have had my surgeon for 25 years and he just retired! So, I had to break in the "new guy". Well, he was a little surprised at my boldness with him. I have found that you have to be your own advocate with your health. You have to be informed and know as much about your condition as you can. You know your body better than anyone else. If he's any kind of physician, he should be willing to listen to anything we have to say! I've learned not to back down and always insist on seeing my primary physician. I have the utmost respect for my physicians, but they don't know EVERYTHING! I'm with you Tara - lead the way!!! Also, a second opinion is a good thing, but you don't have to go with the one he chooses (I'm sure you know that already). I pray that you make the best decision for you, Tara - Lord knows you've been through enough already!! -------------- Your friend, Meg

tarababy

Thanks Meg, I will be giving it my best shot. Thanks to everyone on here, it's making it easier to handle. Cheers, Tara

Whoa
Nurse
Hey Tarababy
Good for you for standing your ground. I work in a teaching hospital...I know where you are coming from!

Crohn's and UC are managed a bit differently in terms of surgical approach. With UC, taking the colon out is a cure since the disease is limited to the colon. In Crohn's, medical management is the standard since it can affect the entire intestinal tract. The goal is to preserve as much intestine as possible, only taking "segments" when absolutely necessary to maintain absorption/function. Scar tissue can form in the abdomen with disease and more surgeries; this can be problematic down the line. It may be one of the reasons they are putting surgery off if no flares...in hopes it stays that way or of doing no harm.

You could probably give me a dissertation on Crohn's and management! I can understand preferring to do surgery while healthy rather than during a flare, but see the other side too since removing the rest of your colon may not arrest the Crohn's; and if currently not having issues with the existing colon. Just a general thought since I don't know your history.

Could you speak to the gastroenterologist re: the Crohn's, and a colorectal specialist re: surgical options? Would your primary make the proper referrals?
tarababy

Thanks Whoa....and yeah, I do know that it can never be gotten rid of completely, as I told the specialist. Guess I may be freaking out a little as I remember very well what my life was like before the bag....HELL!!!!!.....and well, I have had too many doctors just ignore me when I tell them how bad it was. Refuse to go back to that. Die first. The specialist has told my GP that an appointment with a surgeon is coming up soon... So I will take this one step at a time ...for now.. Thanks for the explanation. It all helps.....cheers for now. Tara

mooza
mooza

Oh, just checked out my reply. I can't spell, lololol. My first alcoholic drink last night didn't go so well. Sorry, I can never spell "ileostomy". That's probably wrong spelling again. Don't get me wrong, I'm happy. No more surgery, my cheekiness is back. But still, did I make a mistake? I don't know, 'cause I also got another stoma and the other one was better. But the first stoma was as perfect as you could get. So, pouch is on the left side now. My great body is so scarred, but summer's coming. I like to freak people out when they see my belly. I just say I was in a gang war and got shot. They really believe me, heheh. AFL season over, go the Blues for '09.

mooza

Tara, get back on chat. Sorry, I was writing more and had the sound down.

funnygurl
Waiting and not knowing the outcome is the worst. I was diagnosed with a very large tumor at the entrance to the rectum on June 2, 2003. I had a resection on Oct 2, 2003. The pre-op biopsies were all negative. The post-op biopsies showed a huge benign tumor with a very tiny malignancy encapsulated in the middle. My surgeon, who is a world-renowned colorectal specialist, had rarely seen anything so huge. He felt that there was too much danger of metastasis due to the location near a lot of lymph nodes and not enough "margin". I was doing great after the resection and felt like I had just won the lottery, only to have it taken away again. In Feb 2004, I had a permanent colostomy. My rectum was removed, but strangely there were no lymph nodes! Frankly, it was a rough operation---2 surgical teams working simultaneously for 4.5 hours. I have never regretted it for a minute. I have my life back and remain cancer-free. I am very active and have literally not found anything that the ostomy prevents me from doing. I love to swim and frequently go to hot springs and spas. I snorkel and travel all the time. I have the control that I never thought I would get back. My life is a thousand times better than it was before my surgeries.
I have no regrets.
tarababy
Hey Mary.. You a bit pissy the other night? Lmao.. Nice one (hic). And 'Up the mighty blues!!!'.. Don't like Maroons... Born but not bred in Sydney.. Lol.
Hi there funnygirl, thanks and yes I know another ostomate with Crohn's and he had a total col first up. 15 years or so ago... And he was the first one to tell me to go get it all taken out, even the rectum.. And I said the same thing to him.... For whatever the reason is, I NEED to keep my bum. Not for any other reason than 'feeling normal'. And if it's to go, I'm putting up a fight, and it can get put on hold like they are doing to me now. I did think that they are just putting it on hold so they only ever need to do one more op on me.... Just sit back and let the disease do our work for us. Anyway, I'd like to say thanks to everyone who's replied. I feel it's better to be well armed with as much info as I can.. For the time being, I'm as fit and as healthy as I am ever going to be, so I'm happy. Cheers to all...
live_love_laugh
Hi Tara, my name's Wanda and I have Gardner's Syndrome, which is why they took my entire colon 15 years ago. Boy, do I wish I had had the opportunity to get used to it before that happened! I was fine one minute and having major surgery the next. My situation was a bit different than yours. I was faced with colon cancer in 3 months and being dead in 6 if I didn't have the surgery when I did. So... surgery it was. The only major difference with a partial and a total is that there are certain foods that you may want to stay away from. Your colon, as you may already know, acts like a filter and trash compactor if you will. It helps digest your food. So, with no colon, there are some foods that do not digest, like lettuce, cabbage, corn, popcorn. These cause major pain and discomfort with blockages in the intestine. Also, I have found that drinking plenty of fluids while you eat is a major plus because it helps food pass through your intestine and not just sit there.
I hope this helps you a little, let me know if it doesn't.
Wanda
tarababy

Hi Wanda, thanks for your reply... Well, let me say first up.... everything you explained about the colon digesting your food, (lucky you) it's never done that for me. NOTHING I was eating was being digested... anything and everything goes through my system and in the bag within 15-20 minutes, less sometimes.. I have never had to worry about a blockage as it all comes out way too fast anyway... Hence the reason I take so much Codeine. Initially the specialists tried everything on the market to keep the food there long enough to gain weight. But the output was always very high... Still to this day, IF, I forget to take the Codeine before a meal.... yes, I know about it within 5 to 10 min. And that is also why I always had sooo much trouble keeping a bag on me. I know I seem to always come back to the Codeine, but if you realized just how much I rely on it to keep the food in my tummy long enough to stay alive... ?!! Yep, it's my life-saver. And after 20 years of use, I'm so addicted it's not funny. More from the last 4 years than anything... But what does one do? I'm not laying down and dying, so guess this is it till they cure me or kill me... lmao. So maybe, I already know a little on how it feels to have that total colectomy. Can't say I'm looking forward to it. Anyway, thanks again Wanda, any input is good input, right! Or, any input is better than no output... Cya

live_love_laugh
Tara, most often what I have is mistaken for Crohn's Disease. Apparently Gardner's Syndrome and Crohn's are very similar. I have researched the two a little bit but not extensively. I think I might look into just how similar they are after all. My curiosity is piqued now. I know what you mean about living with it or dying from it. Given the choice of surgery or death—there is no choice! I would rather stick around and have fun, wouldn't you? I too may soon face another surgery but it's my stomach that is in jeopardy now. Seems those nasty pre-cancerous polyps that invaded my colon have now invaded my stomach. Yuck! Not sure where that will lead me but I'm up for the challenge. Eh! They have already taken my colon, why not take my stomach too? LOL. If you can't laugh at your situation, what can you laugh about???
Take care and see you round! Wanda
tarababy
Hi again Wanda, well you have me interested now. Never heard of Gardner's Syndrome. Never heard of anything even remotely close to Crohn's. So guess who's going to be doing some reading shortly. Anyway, if my symptoms are right... don't think it's going to be all that long before things start to go back down hill for me. Better start thinking about giving the smokes up so I know I will make it through the next op... prepare myself a bit for it instead of like the last time... "SURPRISE!!!" WTF?
And you are so right about being able to laugh about our situations no matter what they keep throwing at us. If I hadn't been able to do that, guarantee I wouldn't be here and if I was I'd be in that ward where they give you some really mind-numbing drugs. Oh bring it on right about now. Can't figure why, but gee, I'm not myself lately. Lost my humor. Just want to be alone. Rather depressed. Thinking it will go away soon, let's hope, don't like feeling like this... worries me even more. Reason being, this is how I went a year before I almost died. Went reclusive and cut off all my hair... yep... it was below my bum crack... lol. Funny, cause now I think about it, my hair would have been perfect to cover it all up... Anyway, now I'm just rambling... thanks for the chat about this. Been most helpful. Take care Wanda and we will catch up soon... Tara
live_love_laugh

OK Tara, here's a laugh for you! Someone sent me a text asking me to call this number.....413-497-0025 (that's a US phone number, by the way). If you really need a good laugh, call it. Trust me, you WILL laugh! Hope your day is going well......
Wanda

tarababy

Hi Wanda, thanks, just did that and yeah, I got a laugh out of it. I do believe I have that same thing on here. On 'Just for Laughs'. But heck, it sounds a lot funnier by phone. Lucky I already knew the extra numbers to ring the states... thanks, darl...

Frenchie55
Hi Mooza,
I too have had my rectum removed 5 months ago and I still pass some blood and I always feel like I have a cork where my anus was. Not sure where the blood is coming from since it's supposed to be sewed shut. One doctor mentioned fistulas that made my hair stand on end. I had those in my stomach and they were a nightmare. The surgeon tells me it's normal but I don't know, it's not a good feeling. I'm going to let it be for another month and then I'm getting it checked again.

Janice
tarababy

Oh my goodness, just sat here for an hour and a half replying to everyone, then go to submit and it asks me to sign in....AAARRRGGGHHHH!!!!!!!!!.....Almost a page, gone into thin air....as I said before...AAARRRGGGHHH!!!!! Oh my god....It was a great letter too, so I say...Ok, well, for starters I thanked everyone, after saying hi.. Special thanks to Mr. Mild-Mannered Hero...Vulcan...Ann and how the hell are ya Mooza?...Remember you sent me a pic of your end result...No pun intended. You gave me the answer I was looking for in one photo.. Anyways, guys sorry for my absence...Found out after the Crohn's thing, that I gave birth to the spawn of Satan...what a head-**k that is....but I'm back....and like to thank anyone and everyone who gave their opinions on this post....It's a scary enough situation to be in, but a hell of a lot easier knowing you're not alone....later folks....and thanks again...Tarababy....

Monsieur Le President

It seems to me that Crohn's is a lot more problematic than UC.
I had "a total colectomy including removal of rectum and anus with resultant ileostomy" 35 years ago and have been fortunate that that sorted the problem.
It was thought that I had Crohn's, but it would seem certain that it was UC.
I have not been affected any further, apart from developing diabetes later, arthritis.
I think the removal of the rectum is itself not a problem, but it would appear that the continuation of Crohn's is the BIG problem.
I can also tell you that I was once told that I would never make a rugby player as long as I had a hole in my arse, and I can tell you that I was no better afterwards!

tarababy
Hi Reg, Crohn's is a real cow of a thing to have. I didn't know for 40 years what was wrong. Now it all makes sense. And from my experience... it wasn't as well known or not around as much as - say bowel cancer. Yet now, these days, it's in more people every day. More and more people are getting an Ostomy because of it. I know they have found the gene to Crohn's... so it wasn't what we ate as kids or anything like that. I'd give anything to know HOW I first got it... and am I right that I have had it ALL MY LIFE. One of life's little mysteries... I also know another Ostomate who I do mention often who has had the total colectomy in the very early stages of his diagnosis... over 20 years ago now... and he's never had Crohn's trouble again... or any problems whatsoever with the anus being removed... So, I'm guessing it all depends on how far Crohn's has raped your body and the years you have had it untreated. I don't, well didn't, heal well when the Crohn's was active and untreated. These days, I heal slow but a lot easier than before. It's been an amazing journey no doubt and I know things I never thought I'd know... But I can still smile and make a joke and well, just get on with life... The speed-hump I call the 'sick-years' is behind me for now... If only we didn't have the thing for foresight, hey... Thanks everyone... nice chatting again...
All times are GMT - 5 Hours