Does mostly EVERYONE NEED SURGERY EVENTUALLY?

[Crohns2011]

I keep reading about people having their intestines taken out and bags on them for life I'm TERRIFIED! I was just diagnosed this year with Crohns!

Is it true that medicine is good enough now to where hardly anyone who is newly diagnosed will need surgery?

PLEASE tell me I can live with my intestines fully intact! It would be scary to have a bag or have the whole thing taken out! I watched my uncle go through colon cancer until his death and he had the colostomy bag and it was horrible Everything about it was horrible and sad! :O

 

[braveheart]

1) Not all of us need surgeries but many of us do. My guess is there must be a statistic about the "surgery ratio" somewhere.

2) Not all surgeries are a colostomy. I had two surgeries over the last 20 years and I still have my colon.

3) Intestines usually are 450 inches length, so you can give some to the worms in advance.

4) Having a colostomy bag is not the end of the world. Many people here use it and have a successful life.

5) It is holiday. Take it easy!!!!!

 

[crazycanuck]

I have no idea what percentage of people with Crohn's end up needing surgery, is entirely possible to go through life without it.

Just because somebody needs surgery doesn't mean the whole thing comes out and you have a bag either. You may have a very small section taken out which is much more common.

 

[tiloah]

A lot of people end up needing surgery.

But a lot of people don't. I personally just had surgery and I am so glad I did. I don't have a bag, but this seems to be the sentiment of a lot of people who do.

You say you were recently diagnosed. Try to take it one day at a time. You don't need surgery right now and that's a good thing. If you do end up needing surgery someday, I think you will be at a place where you are better prepared for it. Keep in mind that almost everyone needs surgery for something at some point in their lives, whether it is Crohn's related or they don't have Crohn's at all (gallbladder, appendix, heart disease, etc.).

 

[mickey]

When I was first diagnosed my doc said to expect at least three operations and eventually a colostomy and life long meds. Instead of accepting that, I fought back by reading up as much as possible and then changing my diet, nutrition, excercise, etc. and making drastic changes. Without change you cannot expect change. My mother was diagnosed with colon cancer around that time and her doc said it was because of her diet. Needless to say, my studies have indicated diet has SOOO much to do with disease and after my second colonoscopy, I was informed they could not find any trace of Crohns. I think it is a lifelong journey to improve your health. Focus on improving your health and reversing your disease. You CAN do it!

 

[Crohns2011]

My doctor said food has nothing to do with it, that I should just "stop eating fruits" and I LOVE FRUIT! He also said I can only eat my veggies if they're cooked and I can't have cold carrots etc. that "Specific Carbohydrate Diet" isn't known to work for everyone, more than half are not effected by eating "healthier" in that kind of a diet. What are people with crohn's not supposed to eat?

I seem to be able to eat anything except greasy foods.....my doc said I should be fine to eat anything but fruit!

 

[tiloah]

Docs will say diet doesn't affect it, but a lot of people disagree with that.

I'm not sure why your doctor told you not to eat fruits and only to eat cooked veggies. A lot of people have problems with that, but it is very individual and when you are healthy enough you should experiment and find what does and doesn't work for you. When I was first diagnosed I was told to go on a low residue, low fiber diet, but that was temporary. Is it possible his diet recommendations were for until your disease was under control?

 

[jlanier]

I think that surgery is a potential reality that people with crohn's need to be aware of, just like any of the other treatments. I received my diagnosis as a result of having to have emergency surgery, and a temporary ileostomy. It is actually pretty easy to live with having an ostomy. Fortunately, with a lot the treatments available, crohns is becoming more manageable. Just remember though if it ever comes to it, surgery is not the end of the world. I went from not being able to eat anything, and being in pain, to pretty much being able to eat everything with next to no pain.

 

[archie]

Hiya, try not to get too worked up about it all as the stress if anything is likely to make you worse. Crohns is very individual and not everyone follows the same course, there are different types and severity of chrohns affecting different parts of the digestive system. some people have very mild disease whilst others are more severe, same goes for the surgery some people need a small resection whilst others need more extensive surgery and some don't need it at all. It is such a diverse disease not everyone fits into a box. As fit your doc recommending no fruits and only cooked veg suggests he's trying to keep you on a low res diet as fibre can be a trigger of symptoms. It is recognised that diet won't cause crohns but it can trigger symptoms if you have it, again its individual and a bit of trial and error personally i can eat most things including lots of fruit and veg but can't eat anything very spicy. I suggest you look around the forum especially the success stories and try and get a bit more information and knowledge which will hopefully put your mind at rest.

 

[GutlessWonder86]

I've had my ileostomy since I was 17. Diet and drug therapy failed as my entire colon was affected. I had several fistulas and abscesses. I was in so much pain when I ate that I lost over 20 pounds even on 80 mgs of prednisone.

My GI saw to it that I had 2 visitors from a local ostomy support group that he managed and they answered all of my questions the night before my operation. That made a HUGE difference in my acceptance of the bag.

It's been 25 yrs. now and I am a visitor liaison as well as secretary of the ostomy support chapter. I was president for 15 years but had a stroke 6 yrs. ago and had to step down. (Folks with IBD are prone to blood clots fyi when we flare b/c the blood tends to become "sticky" due to inflammation in the body). Being active in the group is so educational because I've met so many interesting folks from all walks of life. I learned not to revolve my life around the bag at all and that I can lead a normal life. Nobody will know that I have an ostomy unless I CHOOSE to tell them I have one. I can do anything that I did before such as exercise, travel, swim, etc.

If it wasn't for the local CCFA support chapter, I never would've known about ostomy surgery. They were having an educational meeting a few months before I was really ill with several GI surgeons and ostomates as guest speakers with a Q&A session afterwards. This came in handy when I was faced with the life and death decision to have my colon removed as I was educated beforehand.

Knowledge is power. The more you know, the easier it is to accept what's handed to you in life. I do not regret my ileostomy at all as I was living in the bathroom 24/7 in high school, was in constant pain, and had no life. Now, I HAVE MY LIFE BACK and am helping others faced with the same situation.

 

[DustyKat]

It is estimated that about 75% of individuals who live with Crohn's disease will require surgery at some point in their lives, and that 75% of those who have one surgery will need at least one subsequent surgery.

Source:http://ehealthmd.com/content/surgery-crohns-disease

This figure is what seems to be tossed around these days. Both of my children have had surgery, my daughter at 14 and son at 17, so I have always been concerned about the need for subsequent surgery due to their age. Their GI, when I asked, stated that with the treatments available nowadays that there is no reason why this shouldn't be their one and only surgery but I guess only time will tell.

There are many variables as to what surgery you may need, if ever, and what the outcome may be. Location, severity, response to treatments, complications of disease and so on. Both of my children have had right hemi colectomies and neither have required a bag. On both occasions surgery was the only treatment option due to complications and both have enjoyed remission since their surgeries! So it's not all bad!

Dusty. xxx

 

[f_else]

I'd agree with most people here that it is not worth worrying about things till they are actually an issue. But at the same time, it is worth being realistic. It is not true that medicine has reached a point where it can avoid any future surgeries for those newly diagnosed. I myself was only diagnosed a year an a half ago and ended up having a surgery four months after my initial diagnosis. It was unavoidable and after two weeks in hospital with no food I was prepared to try anything. But it was worth it and I have since moved on very well. I didn't have to get a bag and only had a small section of my intestines removed. I now have a four inch scar that runs down through my belly button. A year on and it has pretty much faded away.
Surgery really isn't the end of the world. If it does get to that point, usually you will welcome it, not fear it, as life will be at a point where surgery will usually be your only option. Another thing to remember is that getting a bag is not the end of the world. For many here if has been a lifesaver, in the most literal sense of the word. Those who have gotten them have been freed by their bags and live a much richer life for it. I initially had many of your fears about it, but I have found that education is the key. If the idea of getting a bag scares you a lot, ask about it. Learn about it, and I think you will find it is not nearly as scary as you thought.
http://www.crohnsforum.com/showthread.php?t=28029 This is a thread I started a while ago with some questions about having a bag. Have a read and I think you will find it has often made a hugely positive impact on peoples lives.
Hope it helps,
Fabs

 

[Kit]

Hi my Crohn's friends. I heard the same statistic about surgery (70-75%). Unfortunately that is what I am facing early this next year. I will not end up having a bag, but part of my colon will have to come out. Going to the surgeon today. I tried not to worry about it before hand, just find a good gastroenterologist, do research and keep on top of things. Your body will do what it wants. As far as eating, there are tons of theories, but most drs have told me food does not make Crohn's worse or better, but certain foods (different for every person) can irritate you. If you live in Canton, I would check out the Cleveland Clinic. I think they have a pretty good Gastroenterologist team up there. Look into it.

 

[mickey]

My doc said the same thing about food not affecting it, but he did not have a reply when I asked why I should avoid particular foods, if food truly does not affect it. Good nutrition in, good health results. Something is causing the disease, so investigate that and figure out what your body is responding to and correct that. Not an easy journey, but you will figure it out. Otherwise, you will only keep getting sicker and gaining more auto immune diseases. Docs will tell you colon cancer is caused by poor diet in some people, so why would it be hard to believe a disease like this is caused by the same thing? If you eat plenty of sweets one day, you will see a result of either constipation or diarrhea. So, you can see it affects the colon. When I was younger I would burn a strawberry incense and within minute I would be running to the bathroom with horrible diarrhea. EVERY time. So, I know that sometimes smells can also affect the body. Take one day at a time and figure out your puzzle of a body. It does take time and patience.

 

[DougUte]

I think the chances of needing surgery depends on how advanced your crohn's is when you are diagnosed. I had symptoms for at least 25 years before I was diagnosed with Crohns. I was diagnosed in 2010 at age 47. 6 years earlier I was mis-diagnosed with IBS. I needed surgery right when I was diagnosed, but that was due to:
1. Having a very mild case at onset - if I had a more obvious set of symptoms it would have been found about 25 years earlier!

2. A G.I. who screwed up in 2004. He did not think it was important to inform me that he could not get the colonoscope into the terminal ileum! I was just told the colonoscopy was clean.

Anyway, I needed surgery right away, but I do not have, and never have had, a bag. I do believe the 75% figure of all crohn's patients end up having surgery is probably accurate, but the treatments are so much better today that the surgeries are not nearly as bad as they were in the past. Many more of us are being reconnected. My surgery removed only 6 inches of my colon and 24 inches of my small intestine. The average small intestine is 270 inches - so 246 inches is left.

The thing is with the small intestine is that different areas of it absorb different nutrients from your food. The terminal illeum absorbs the B vitamins and calcium, so Crohnies have to watch for shortages - take supplements or vit b shots, etc..

The colon does not absorb much in the way of nutrients. It absorbs bile salts and water. It is also several inches long _ I am not sure of the average length. My surgery took only the first 6 inches - right at the place where the terminal illeum joins the colon. Good news about this - I will never need an appendectemy! When this was removed, the surgeon connected the new end of the small intestine to the new end of the colon. There was never an ostomy involved. The only time they have to do an ostomy is if they have to remove the other end of the colon where it enters the anus. In Crohns this is not the most common site for the disease to occur.