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Hi, I was dx with Crohn's in December of 2004, and to make a long story short, it appears that the only thing that keeps me feeling reasonably well is 12mg of Entecort, which I can't stay on forever.

 Reply posted for Susanknits.

I have to agree with those who say surgery should be your absolute last resort. I was diagnosed in 1972, and I've had five surgeries - three of them were resections. There are several reasons I would caution you about surgery. One is that subsequent surgeries can be problematic - at least that's what happened to me. My second and third resections came two weeks apart. In the second surgery the doctor talked about how my intestines had become a mass of adhesions and he had to basically try to separate them with a scalpal. When he put them back inside me, they adhered again, and the surgery didn't work. So my four day trip to the hospital turned into a month. The other thing I think surgeons and even many gastroenterologists don't emphasize enough is the nutritional problems you can encounter with a large portion of your small intestine gone. One surgery may not cause a problem, but several can. I have to get B12 shots every other week because the part of my intestine that absorbs it was removed. I believe there are other issues like this, but I'm still researching it. If I knew then what I know now, I would have tried to delay the first surger much longer.

 Reply posted for Jackie1980.

You certainly are not on Remicade for the rest of your life!  The story is: you cannot stop it for a while and then start re-taking it.  There are bad (allergic) side-effects.

You can always stop it and start taking a different med if it stops making you feel better.

 Reply posted for stoker.

I have had 3 SURGERIES.  I was diagnosed in 1977!  I had symptoms dating back to late 1960's.  Doctors could not diagnose me and told me often that I just had a virus.  So, I have it a LONG time.

My advice is:  surgery was the BEST thing and I wish I had it sooner.  My first one was in 1982.  I suffered for so long.  Everyone is different.  I do believe you should try different meds to see if something helps first.  Remember, now they have so many new meds.  If meds do not help, have surgery.  Don't suffer.

It is not because you have surgery that it will recur.  Crohn's recurs because the surgeon cannot get every miniscule Crohn cell when they are removing intestine.  For me, I have felt better with each surgery.  But, yes unfortunately, it returns.  And with each new med that becomes available, one or two just might help, a lot!

 Reply posted for Susanknits.

I was diagnosed with Crohn's 15 years ago.  In that time I have been on pretty much every medication there is. Some worked better than others and I had long periods of "remission". But I kept winding up in the hospital once or twice a year with severe abdominal pain. This last episode was the worst. We had always considered surgery to be the last resort. But it seemed to me and my Dr's that this extreme abdominal pain was getting more frequent and even though they did not see blockages that it could eventually be life threatening. Since we knew I had at least one fistula we all decided that I should have surgery to at the very least remove that portion of the bowel and repair that section. 

I had alot of pain after surgery, mostly due to a really inept anesthesiologist who placed the epideral in the wrong place. I was in the hospital 10 days after surgery and when I came home I could barely walk for a while. I had a very large incision because when they opened me up they found all sorts of problems and I required alot more surgery than they had anticipated.

It took me the entire 6 weeks to heal but after the recovery I felt like a million bucks! However, that was short lived because about a month after that I relapsed and my Crohns is active and I have developed another fistula. I am taking remicade right now which I do not like but right now it is my only option for getting the Crohn's under control again.  My Dr's are deciding whether or not I will need another surgery. I have only been out of surgery 5 months!

The moral of this long story is that if you do not have to, do not have surgery. There are so many other ways to treat Crohn's without having surgery. It is not the easy way out believe me. In my case it was absolutely necessary because what was going on inside of me would never have been cured with medicine. But going under the knife is a very traumatic experience emotionally and physically.

 Reply posted for Jackie1980.

Good afternoon Susan

My name is Brice and I was diagnosed with Crohn's Disease in 1993. I have been on deltazone, Sulfasalazine, metronidazole, asacol, azathioprine, nexium...you name it. Having the disease this long I have had many serious complications over the years, but last year was my worst. I was hospitalized from April to October with intestinal blockages, abcests, and ultimately surgery. 

They removed 8 inches of my colon and small intestine, which has been my most severely damaged area over the years. The surgery went better than expected, the recovery went very quickly, although by then I just wanted it over. The doctor informed me beforehand that if I have surgery it increases my likelyhood of needing surgery again in the future to about 50%. But it was my only option at the time.

However, this past weekend I had another flair-up and the doctor wanted to re-hospitalize me again, but instead we are trying to hold it off with high doses of steroids.

Surgery may sound like a good option to you, but don't jump in too fast. You need to think this through very seriously because it may help you feel better for awhile, but it isn't a cure, and it may not help as long as you hope it will.

I don't want to scare you or make it seem hopeless, but I don't want you to jump into surgery if there is other options for you. Often once surgery is performed it can lead to future surgeries down the road. Sometimes the short term benefits aren't worth the hassle.

 Reply posted for Jackie1980.

Hi jackie, thanks for the reply. My daughter's name is Jackie :-)

 Reply posted for Susanknits.

Good Morning!

Here is my story, i was diagnosed with crohns in october of 07. I was on steroids, entocort, imuran . Which they all worked, but then i started getting episodes of major cramping , almost as if i was in labor. Come to find out the same thing, i have parts of my small and large intestines that are inflammed and considering that i was on both entocort and steriods, which we all know is not good to on long,,, my doctor suggested surgery. Although i now hae c-diff from them stirring up everything, i know that i made the right decision. my doctors are telling me that there is a 50% chance that i will  NEVER have any problems again... i will take that. My only other option was to go on remicade and my doctors where unsure about this drug becaes it has only been out on the market for ten years and we do not know the long term affects of it. plus once you are on remicade you are on this drug for the reset of your life.

but i will tell you this. The surgery recovery is hard. I just had my surgery on april 8th so i am still at home recoverying. You will be tired and you will want to take your pain medication. But it is bearable. i was in the hospital for 6 days and that was only because i got c-diff. if i didnt get c-diff this whole recovery wouldbe a lot easier. They say only 10% of people get c-diff from  the surgery,,, i just happened to be one of he lucky ones.For me personally, surgery was my only option that i felt i had. And once i get rid of this infection i believe i will start getting my life back and that is what we all want..our regular life back. if you have any questions email me.....