Surgery after Crohns - Surgery better than treatment?

[karma_hunden]

Hi guys, (for a summary read the last paragraph)

I posted my story in the "my story" board. Basically, I was having stomach and intestinal pain and when i finally fell bad enough to go to a hospital they said it was the colon that was inflamated and infected...hm...never felt pain there but oh well, i went on with my 10 day antibiotic treatment. (cipro, flagyl)

they just fixed my fever but diarreha was still there. After i finished i felt weaker and ended up in the hospital again, this time for a long run of almost a month.

The reason i stayed so long is because they spent 3 weeks trying to treat the infection/inflamation with antibiotics and stuff PLUS a hemorrage of a vein that popped in that area which they controlled later the first week, but popped again a 2nd time and finally the 3rd time pissed the gastro doc off so he called in the surgeons.

They removed part of my small intestine and colon (2-2 1/2 ft overall i believe). I no longer would have to be treated for Remicade. Basically just watch my diet.

I have heard that people that have surgery has experienced no flare ups for a long time (5-25 years without a problem...basically cured but cant say you are "cured" because its chronic and could come out any second)....these people carried on as usual but still watch their diet.

What do you guys think about surgery? does it really fix you (for the most)?

 

[Crohn's 35]

Welcome to the forum and no , surgery is not a fix or cure, I have had two resections and they come back and sometimes quicker. Surgery is a last resort, because there is no cure, you have to still watch your diet and take maintenance drugs. Some people do very well after, some dont, but the risks are higher every time you have surgery. Not a quick fix, and I still have moderate Crohns even after 2 resections, diets, naturalpath, acupuncture, therapy, you name it. Every drug known to man, but that is me, but I still say surgery is when you cant take it any more and bowel obstructions and strictures are bad... my theory anyways!

 

[Nytefyre]

I had my surgery in Feb 2007 and was back in the hospital in Sept of the same year. After that, I had about 6 months of good living before I was back in the Crohn's Zone. That being said, everybody reacts to their surgeries differently. Hopefully yours will take!

 

[imisspopcorn]

Hey Frank, I read your story and was wondering if you were on any meds. I had 6 inches of ileum removed in 2008. 6 months later the disease was back with a vengeance. Although I am no where near as ill pre-surgery, I am on Remicade, which I think is the reason I am feeling so good............Most people do have recurrence of the disease post-op, and tend to need surgery every 4-6 years....You only have so much bowel to lose before you become nutritionally dependent on supplemental nutriton.....I'm hoping to preserve my remaining bowel for as long as I can....I really hope you can have long lasting remission.

 

[karma_hunden]

hey imisspopcorn...lol funny usernmae btw, i did miss it when i went to watch avatar this weekend...that sucked.

im on prednisone for now. my gastro said i didnt need remicade due to the surgery (dont know why)...this wednesday i will be going for my first post-surgery check up and he will see what he does with me regarding medicaments and so forth.

it sucks that some of you had remissions so quick...did you felt it coming? or where you feeling good all those 6 months and then all of the sudden you had a bad flare? just curious.

also, is every flare up going to make you go to the hospital or can it be avoided by attacking the flare up as you get it with some meds?

 

[kenny]

I am immeasurably better off having had surgery. But you have to take in the scope of my condition before hand. It is suspected that I was showing signs of IBD for over ten years and did not get any treatment for it. I had some nasty fistula and one of them resulted in an abscess embedded in my abdominal wall. That abscess would have ruptured out the front of my belly, if I had survived long enough, and created an ostomy of sorts.

 

[Nyx]

I just had surgery in December (a colostomy) and so far, it's been great. But, I was pretty bad off before the surgery. I'm hoping that after I have my rectum removed, I'll be in remission for a long time (most of my disease is in the lower intestine so will be removed). Right now I'm not on any meds, and I feel wonderful. Crossing my fingers that that doesn't change

Cindy

 

[Cog]

After a full colectomy I had 5 years of remission - now its back but I have a better control and handle the flare ups easier - diet is still very restricted

 

[karma_hunden]

Cog did you ever experience any crohns/abdominal pain or anything related during those 5 years?

 

[Jennjenn]

Karma I was very ill pre surgery and had about the same amount as you removed. The area was very narrow and strictured. I had a lot of complications with my surgery and had 3 surgeries and an abcess at the sugery site all within 6 weeks when it was supposed to be only 1 surgery. After I was afraid to take meds because they told me the complications could have been from all the meds before making my body and intestines so weak. I stopped meds and thought I would give my body time to heal naturally on its own. I did not last long. About 6 months after I started to go downhill again. Not the same as before surgery but still very ill. I tried to get through my last semester of undergrad and made it up finals and wound up in the hospital for a week. I was very fortunate for two of my prof. to just let me be exempt from the final because of my other grades but I was really lucky that the other two strict prof let me take them when I got out of the hospital. I wound up making it to the graduation and said after everything I went through I didnt care if I had to crawl to the graduation. A week after I had a blockage and was in the hospital for another two weeks. I was advised by my doctor that I cannot go without some form of maintenance meds because it would cause even more complications. I suggest talking with your doctor about some form of maintenance. I am not saying that what happened to me would happen to everyone but there is a high chance of it becoming active in the same area after your surgery.

 

[imisspopcorn]

hey imisspopcorn...lol funny usernmae btw, i did miss it when i went to watch avatar this weekend...that sucked.

im on prednisone for now. my gastro said i didnt need remicade due to the surgery (dont know why)...this wednesday i will be going for my first post-surgery check up and he will see what he does with me regarding medicaments and so forth.

it sucks that some of you had remissions so quick...did you felt it coming? or where you feeling good all those 6 months and then all of the sudden you had a bad flare? just curious.

also, is every flare up going to make you go to the hospital or can it be avoided by attacking the flare up as you get it with some meds?

I could tell something was up....Sorry, I know that's a vague answer. I was glad I had the Colonoscopy done 6mos post-op...He could visually see the disease and scared the poop out of me...I was very ill for the whole Summer prior to surgery., I never want to go back there again....I think I have PTS. Everytime I drive by the hospital I start to hyperventilate. This disease sucks!

 

[Sue-2009]

You know, at that seminar that I went to at Univ of Mich, they mentioned an interesting "thpought". There is a thought that the IBD does have a connection to the bacteria in the gut. Because sometimes the "problem" is removed with surgery, but returns in the same area. So at U of M they are trying to invent this wire thingy (sorry) that is small holds a pinchy thingy inside and they scoopy up a piece near the ulcerated or affected area to study...Just a thought they are thinking....Sue

 

[kenny]

I totally agree with Jenn about the recurrence. People around town say things too me like "Glad you are on the mend, I guess you just have to watch what you eat now" and things like that. I smile and say yea but I know the chances of further operations are more than 50%. I also know the stat for Crohn's patents and the incidence of intestinal cancer. That kind of makes me laugh at the chances added by the imuarn I am on. It is not even remotely close to the occurrence of intestinal cancer in people with IDB irregardless of medication. Not even x1000! lol.

 

[Sue-2009]

Crap!!! What is the chance of cancer in the small intestine???!!! I removed my colon (ok not me personall) due to the high risk of cancer since they couldn't control it..Son of a gun!!! Sue

 

[Jennifer]

I had my surgery about 10 years ago. I've had symptoms off and on the entire time but nothing that sent me to the hospital, like diarrhea (more often then not) and pain. Even after surgery you still need to take medication. As said, you only have so much intestine to take out so surgery isn't the best choice unless nothing else is working.

And Kenny, I constantly had people saying stuff like that to me. It boggles my mind at how much people don't understand or don't try to. Every time I was sick my own grandpa would say that it was because of what I ate. He still thinks that and it's been almost 19 years since I was diagnosed.

 

[kenny]

I had my surgery about 10 years ago. I've had symptoms off and on the entire time but nothing that sent me to the hospital, like diarrhea (more often then not) and pain. Even after surgery you still need to take medication. As said, you only have so much intestine to take out so surgery isn't the best choice unless nothing else is working.

And Kenny, I constantly had people saying stuff like that to me. It boggles my mind at how much people don't understand or don't try to. Every time I was sick my own grandpa would say that it was because of what I ate. He still thinks that and it's been almost 19 years since I was diagnosed.

Actually I am fine with them thinking that. I live in a rural area where people kind of get to know you after a while. If they knew the truth I'd never find work around here again :ylol2:

Hey sue there is a great multi media presentation at the CCFA website I will PM you the link for. You can find other info there as well. (edit) you are probably light years ahead of most of us since you had that done.

 

[Brad P]

Crap!!! What is the chance of cancer in the small intestine???!!! I removed my colon (ok not me personall) due to the high risk of cancer since they couldn't control it..Son of a gun!!! Sue

Chances are very low as cancer in the small bowel is rare...but 20+ years of Crohn's does slightly increase the odds, but not by much. Unfortunately, those odds beat me but I am beating the odds on survival.

Back to the topic...I had to have surgery for a small bowel tumor where they removed 2ft of bowel for that, and an extra 2ft that had bad strictures and narrowings from scarring. The surgeon did me a favor there seeing how he was in there. Once I was discharged and back on the mend, I felt SO MUCH BETTER post-op, best since at least 10 years. Everything was moving so well through my system. Prior surgery I'd be lucky to get my 3 meals a day plus a bedtime snack into me. After surgery, I'd pack away an extra 700+ calories a day in high-calorie shakes and bars on top of those 3 meals and bedtime snack. My guts never had a problem with it. I gained 28lbs in 2 months! 5 of which was extra weight over my normal weight. I thought it was a miracle, a silver lining in what was a very dark cloud.

But then the chemo started 2 months after surgery and that was just brutal. I haven't been like I was pre-chemo since finishing it May 2009. Last Nov they found ulcers and inflammation in my duodenum as I was experiencing heartburn, stomach gas and was passing lots of gas. I will never know how long I could have gone feeling that good or if the chemo just triggered something, a flareup, bacterial intestinal overgrowth, yeast, or whatever. I'm having trouble getting my symptoms under wraps and gaining some weight. I can't eat as much as I was pre-chemo either. It really sucks but at least there's no signs of returning cancer as of last month!

The surgery itself was pretty smooth sailing too...no complications and a scar I can barely notice. They sewed me up good.

 

[braveheart]

I had a surgery in 1994. It was a really painful experience. It took me a 2 weeks to get out to the hospital and a month to start walking again.

After 3 months I feel like a person again. Six month after surgery I feel like a million bucks. Symptoms free, no pain, no diarrhea, I could eat everything. Doctors asked me to stop treatments. I knew this disease is chronic but I thought I was cured.

This wellbeing lasted for two years, when problems come back.
I haven't feel ok any more but I’ve tried to avoid the second surgery, with some success up to now. I think that surgery is a big relief but at the same time it is the last resource.
We cannot reduce the length of the small intestine every two years.

 

[krahsdnal]

I know that it can recur after surgery, usually in the area where the bowel was resected and that once you have surgery you increased your chances of having surgery again. But this thread is depressing, some folks only had 6 mos of "relief"!? I was hoping to get at least a good 5-7 years - I would say more but I would rather be a realist and be pleasently supprised.

 

[kenny]

I know that it can recur after surgery, usually in the area where the bowel was resected and that once you have surgery you increased your chances of having surgery again. But this thread is depressing, some folks only had 6 mos of "relief"!? I was hoping to get at least a good 5-7 years - I would say more but I would rather be a realist and be pleasently supprised.

I know what you mean. I am hoping that having a lot of consideration about what I eat will prolong my good health for as long as possible. I am trying to prevent the chronic persistent inflammation that a lot of people seem to suffer from by taking my maintenance drug and eating foods that reduce rather than cause inflammation in the gut.

 

[pcbgirl227]

Hi karma_hunden!! I can understand your worries! I am new to the forum but certainly not new to Crohns or surgery. My first surgery was in 2004; my second last April. I was doing great until a few weeks ago. Occasionally I would have some bouts of diarrhea but after a few days it would go away. Now for about 3 wks I have been having about 12-15 bathroom trips a day morning, noon and night...sucks! Went to see my gastro last week and put me on Flagyl to see if possibly might have bacterial infection. No relief. So tomorrow morning have to colonoscopy done to check for Crohns as it appears as my doctor stated "The monster is back again!" Good Luck, certainly hope you longer remissions!