# Entire large intestine removal - magic cure?



## persephone300

The surgery they want to perform for my crohns would mean removing the entire large intestine and attaching the outside bag.

Is it safe to say that it will be entirely in remission then? If it is only the large bowel completely buggered, and that is entirely removed, what do you find the chances of it spreading to the small intestine or other areas likely?

I've read many of your surgery stories about further ops and remission, but am unsure whether these have been cases where there's just been some surgery or the whole whammy gone?


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## nogutsnoglory

No that does not solve the problem for crohns but it does with ulcerative colitis. Crohns can attack anywhere from mouth to anus but primarily it attacks the small intestine.


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## Jennifer

Agreed. You wont be 100% all clear. You may have a long remission though and who knows what will happen. Is there just no way to treat it with meds anymore?


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## Dawn Gibson

Hey Persephone. I'm in a similar position. My Crohn's mainly affects the colon and the docs want me to have it removed. But my main concern is that it's not taking the disease away is it? I can't take maintenance meds as I can't seem to tolerate any medication. So my hope is to control any remaining disease with Modulen (liquid diet) should it start causing problems in the small bowel. It worries me for sure, but from the advice I've been given on this forum, I think it might be the best thing I ever do.

I've recently been to see the stoma nurse to talk about what life would be like, and I've got to say it all seems positive. It's a big step to take, life changing in fact. But I truly believe people with chronic illnesses are a special breed of people, we have to put up with so much and are all the stronger for it.

Get some more information, as much as you can, and then go from there. There are lots of people here who will be happy to answer questions or just give you some moral support. 

Good luck.


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## persephone300

Hi Crabby...unfortunately no, I've exhausted all meds/treatment other than the elemental diet, but I think that would be only a plaster as it were.

Infliximab is the only thing that has really worked and I've had quite bad side effects with most of the meds, including frequent cellulitis, and more recently joint and muscle pain. Pred used to calm it down, but even that seems to refuse to stop the bleeding of late - I think it's just damaged and too far gone to save.


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## 2thFairy

If you do have surgery and end up with a bag, check out the stoma forum for lots of good advice.  (we have fun over there, too!)


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## Switalski

Persephone300,
I have Crohn's only in my colon. Recently I had a right hemicolectomy where the surgeon removed about 16 cm of colon, the IC valve, and about 5 cm of small intestine, then joined my small intestine to the remaing part of my colon, which still has Crohn's. I asked my GI if the Crohn's would now spread into my small intestine, and he said it was unlikely.  You should ask your GI about the probability of the Crohn's spreading and whether you will be on "maintenance" medications to control Crohn's following the surgery.  Good luck.


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## persephone300

Thanks Switalski...

I'm going to try and ask all the questions I need but have to jump through several hoops to get there...including another flexi-syg! Groan


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## Snap

Hello Persephone!  Okay, I have an ileostomy--no more diseased large bowel and rectum--yeah!  Anyway, you will hear several percentages and statistics.  If Crohns has not affected your small bowel--that is in your favor.  However, Crohns can go anywhere it wants to--from mouth to anus.  You have a 50/50% chance that, after 5 years, it could "flare again" elsewhere.  Also, the chance of requiring a second surgery at some point is 70%.  Now, obviously you are going to read and hear several different things--this is what I have read and also been told by physicians.  I am very glad that I had surgery--it was miraculous that I wasn't full of colon cancer.  My bowel was full of masses, etc.  And--I feel totally different--it's amazing not to look at food with fear and to live with horrible pain every single minute of every single day!!!!  Stay strong and keep us updated!   Snap


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## persephone300

Thanks Snap for the comments.


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## Snap

Anytime Persephone--you just do what is right for you!  Research and communicate with your doctors--get a second opinion if you feel more comfortable--although I'm not sure how your medical care process works over there.  Hoping you can just feel better.  Keep us posted.:study:
Snap


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## 30yrsofcrohn's

Wow Persephone I feel like you do.  I was first told by a colon-rectal surgeon that I would need my ENTIRE COLON AND RECTUM removed due to high grade dysplasia found in a polyp in my large intestine.  I also was diagnosed with three strictures.  I went screaming out of that Dr.'s office and went to another hospital for a second opinion.  As it stands now, I've seen a really understanding surgeon who finds it reasonable to do a sub-total colectomy where he can attach the small bowel to the rectum, therefore, NO POUCH!  The only thing that worries me now is reading how some people have terrible diarrhea and is stuck in the house.  (This would be AWFUL for me, since I'm very active and have never had any surgeries.)  I'm trying to find out as much info as I can.  But If I were you, I would get second opinions.


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## PsychoJane

As mentioned already, Crohn unfortunately is not secluded to colon only even if you have never had manifestation elsewhere. For my part, I had fulminant colitis when I was 14 which brought the need for total colectomy. I have been med-free and crohn-free for 10 years after that. Beside a few emotional downside coming from the adaptation as a teenager, having a stoma allowed me to live well and normally. Anastomosis was really not something I wanted to try due to the risks sus-mentioned by 30yrsofcrohn's. 

Anyway, I have to say I thought, even though I knew that this surgery could not cure Crohn, that Crohn had forgotten me forever. For the first time since 1999, I had a relapse at the stoma site in 2009 that never really settled until the surgery I had a few weeks ago. I'm hoping that I'll get the same luck and many years without the sickness again. I don't regret my first or my second surgery.


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## sammies

Dear friend:  a total proctocolectomy with permanent ileostomy saved my life. After 24 years of moderate crohns colitis, I became allergic to 6mp amd pentasa wasn't doing it on it's own.  My colon was a mess, my rectum perforsted, my vaginal area littered with fistulas. The surgery brought life back to me.  Unfortunately, Now, 3 years later the crohns is back in my jejunum and it is fistulizing again. All this to say:  life is good and very active for me with an appliance/pouch.  There are no limitations. However, Crohn's can come back.  But I'm going to fight and pray as hard as I can. Best to you!


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## Hobbes650

Hi persephone!

Maybe it will be a magic cure.  I hope so.  With Ulcerative Colitis yes, you remove the colon and rectum and you will no longer have the disease.  A diagnosis of UC is not always 100% accurate though since IBD is not yet fully understood (see my story).  BUT, your life will be a million times more enjoyable after surgery regardless.  With Crohn's too, your life will be much better.  But the disease can most likely will at some point, come back.  I got about 25 years of disease free living before being diagnosed with Crohn's, and just started meds.  Feeling much better already after just two weeks.  Even after surgery and in remission, I think you'll still have to take some meds.  Prednisone use will probably go away, but you'll probably still have to take some other one or two.  As for your concern about problems with surgery, well that's the million dollar question- are they due to post surgical problems or the disease?  With me, it was the disease.  BUT, with a permanent ileostomy, having a flare up hasn't been nearly as bad as before having surgery- most because I do not suffer from incontinence.  Also after having surgery, a scope can be used inside the stoma to look around to see any flare ups, and that's a pain free procedure.  One I was diagnosed with Crohn's my initial reaction was that I so did not want to go through THAT sickness again, but it's entirely different now.  Much more manageable.

Keep us posted with your progress!
Hobbes650


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## persephone300

Thank you Hobbes, and everyone else for your comments. I think they've mentioned in the past that I have crohn's colitis, basically I have some patches that are more crohns and some that are more colitis, which I suppose is why the large intestine is infected more than elsewhere as yet. Seeing consultant next week, and hopefully he can answer some of my questions, though he's not surgical - and we'll see how it goes.

I travelled on the weekend for a bit - and was not well - really was a nightmare and made me wish things were different.


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## afidz

I am sorry to hear that you have to undergo that surgery, my Crohns is also in my colon and I almost lost it a couple years ago.
Anyways what I wanted to say I guess as words of encouragement, my dad was diagnosed with Crohns at age 11 (at that time he was the youngest) in his small intestine. They decided to take out the part of his intestines that was affected by the disease and he has been fine ever since. When he goes to the Dr, there is no sign of him having the disease, he just carries the gene ( which is how I got it). He still does have complications becuase he is missing some of his intestines but he says its better than the pain you get with Crohn's. 
I hope this helps. Good luck with everything!


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## Hobbes650

I just remembered something.  When I was sick before my surgery, the goal was to reduce the inflammation, get Prednisone dosage down to very little and see how my life is.  I did not have a fever and was improving a little after my first hospitalization (for bowel rest only).  For the first six months my recovery was two steps forward, one step back.  I tapered off Prednisone slowly, but alway went back up a little bit before tapering again.  6 months of this later I'm not able to get lower than 20mg of Prednisone every other day.  My doctor at this point asked me the question- "how would you feel if you stayed at this level the rest of your life?" Maybe not the exact words, but he was trying to measure how comfortbable I was at my present level.  I had no idea since that thought had not occurred to me (mostly due to I wasn't going to give up).  I couldn't answer that question and didn't even know how.  So my doctor asked me to rate the quality of my life on the following scale: 0-10, with 0 being the worst, when you were first hospitalized, and 10 being the best before you ever had any problems.  When thinking about my level of pain, incontinence, and everything else, I said "probably a 3 or 4".  My doctor then asked, "at what level would you need to be at to live happy"  I said, at no less than 7.  So, the obvious next question was, "well then, have  you thought about surgery?"  At that point I hadn't because I didn't feel sick enough.  However, that conversation was the beginning of my realization that I may not get much better and I should start to think about it.  I was 19.  We decided to try a few more months and reevaluate.  But after a few months my fever returned, and then it was obvious what to do.

I share that because quality of life was a huge factor in my process- expecially since in my case since at that time the colon and rectum were affected, but not the ileum.  Surgery is certainly an improvement in the quality of life and it does seem easier to keep the disease in remission after surgery than by forcing into to one first through drugs- but that's purely my speculation. Surgery is not an easy thing to choose and this board will be full of people who can help you.  If you do end up having surgery please take to heart one important thing- nobody regrets the decision to have surgery because they feel so much better afterwads.  Good luck!


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## persephone300

Thanks for all your kind words and words of encouragement. A year ago when they mentioned surgery I wouldn't listen to them, I don't feel sick enough - but, I want my life back, I feel I've wasted 10 years just waiting around to feel better, avoiding lots of things I'd rather be able to do. Now, although I don't feel sick enough, I want to just get on with life!

Will let ya know what happens...


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## Susan2

I also had a total proctocolectomy after many years of severe Crohns, multiple hospitalisations, a number of resections, loss of weight, constant "accidents", severe pain... I could go on, but you know how it is.

That was 13 years ago. I must admit that it took almost 7 months to "grow in" the massive cavity created by the removal of the diseased area around the rectum, but that was partly my fault for resisting the operation for so long. Since I "came off" Prednisolone after the operation (and Endone for the pain  while healing), I have not taken any drugs for Crohns.

I have my bloods checked regularly - and the results have always been surprisingly good. I have to watch my hydration levels - I have ended up in hospital twice with dehydration. I have to be careful with what I eat and where I eat, and not to get too tired, and I still have some "accidents' with my ileostomy - but I now can lead a life where, unless I want them to (or have an "accident"), most people do not realise that I am different. I have travelled to places that I wouldn't have dreamt of previously - I have snorkelled in the Galapogos Islands, been on safari in Kenya and Tanzania and am off to Botswana in August. 

The spectre of Crohns recurring is always there, but I usually manage to keep it well in the distance and, so far, there has been no sign of further Crohns.

All of this really is to say that, although such an extreme measure as a proctocolectomy is not to be taken lightly, it is sometimes the best solution.


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## sammies

My disease was Crohns colitis. In the 24 years before my surgery I had only a small bit of small intestine activity in my duodenum.  In August of 2009, 6 months after my surgery, my small intestine was completely crohns free.  Unfortunately, in March of this year, crohns came back with severe and aggressive activity in my jejunum.  I'm hoping humira will begin to slow things down and perhaps the addition of another drug will bring me back to remission.  All this to once again say its important to know what type of disease you 
 Are dealing with.  In retrospect, I wish we'd started the humira directly after my surgery, but alas, my kidneys were in tough shape.


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## kiwij64

Hi Persephone,
I'm new to this site too.  Had a total colectomy three months ago and am just recovering.  My specialist has told me that Crohns affects all areas from mouth to anus (and anything inbetween) and they use surgery as a 'last ditch' attempt.

Unfortunately I also have Crohns in my small bowel and found out recently that I also have it in my rectum.  Am seeing the specialists next week to see if there is a chance of a reversal but I know it is slim to none.

However, life goes on after a colectomy.  I am sure you will find that once the pain of surgery diminishes that you will have a better quality of life and even though changing and emptying bags isn't the most glamorous thing you've ever done, you will get used to it.  

When I was in hospital recovering because of the circumstances of my operation which were very complicated, I focused on that bag and learnt very quickly how to master changing it and emptying it.  That was the only thing I could control in my life at that time so I did it and I'm really pleased I did.  

The stoma nurses are also great sources of information and support when you are a 'newbie' and I'm sure that all will go really well with you and you will realise that you've made the right decision.

I truly hope it all goes well for you.
Regards
Kiwij
:thumleft:


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## persephone300

Thanks Kiwi...I'm awaiting a date atm to discuss the surgery with the surgeon. Everything takes so long.


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## kiwij64

I know and it messes with your head, it really does, but just try and focus on all the things you want to do when you have recovered, I found that that really helped for me.  I even made lists when I was in recovery in hospital, sort of like a 'get well bucket list' of things I wanted and things I needed to do, from having a piece of salmon to going to the beach and watching the sea and getting a new puppy because my old dog had died when I was sick.  I hope this helps you.  It definitely helped me and took my mind off for a little time what was happening to me.  Good luck 
Kiwij


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## drewsphere

I've learned with IBD, there is no magic cure all. One can reduce their chances of symptoms or complications of IBD through surgery or medication but the risk is always there. It sounds like you've tried all sorts of things for a long time so I can understand why surgery that can make you symptom free is attractive. My IBD started out as mild UC and went downhill fast within a year such that my entire colon was a mess. I went through all the classes of meds with no luck and was told surgery was the best option to get into remission. They said that it would cure me of UC (which technically is the case since you can't have UC with no colon). I had the surgery 2.5 yrs ago and I'm still not in remission, with the current diagnosis being UC-Crohn's. 

If I had it to do over, I might have tried more non-surgical things like Elemental Diet, although my health was declining that something had to be done quick. Surgery is a permanent thing and you can't go back so make sure you've explored all other avenues.

Life without a colon has been a big adjustment, but you do feel much better than the constant problems of IBD. Having an upbeat attitude is critical in dealing with IBD since we still know so little about the causes and can present challenges we never expected.

Ask your doctor if there are any groups with people who've had that surgery (or threads on here) to get their experiences. It's good to have communities of people that understand what you're dealing with.


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