How long did you manage without a operation

[743]

How long did you manage without your first operation

When i got Crohns my gi took a blood test which i needed to wait a week for and estimated 5 years till i'll need surgery. 4+ years passed…

 

[Nancye50]

I wonder what that test was? What type of surgery?

 

[743]

I was twelve then, i dont knew what type of blood test it was. although i knew it was sent to California (I'm in n.y.).

what surgery? i guess Crohns related.

 

[Nancye50]

Maybe the Prometheus blood test? I think you were probably misled if a dr tried to give you an exact timeline like that.
If your disease is under control, there's no need to think they'd do surgery!

 

[743]

no it sounded more like a estimate.

 

[theOcean]

I had a doctor tell me when I was in the hospital that I needed to get my colon out as soon as possible. Still have my colon, and I'm in remission with absolutely no problems. So just because your doctor gives you an "estimate" like that doesn't mean it's true.

 

[shamrock15]

Well, I was 7 years for the first, 5 years after that, then two, then four, then 3 days followed by four months. It's been busy, but we are working on 8 years now since the last...

 

[Dragon]

He is at 7 years and a couple of days since his diagnosis. He was diagnosed 7/3/07. Yes, I remember the exact day. And somehow we have managed to avoid surgery so far.

 

[TigerFu]

From diagnosis of Crohns it was 2 weeks. but from first flare up it was 5 weeks till i got a total colectomy

 

[Cross-stitch gal]

As of next month, August it'll be 18 years since I was first diagnosed. No surgeries to date...

 

[hbrekkaas]

I had less then 2 months from diagnosis to open surgery.

 

[AmyIsHere]

Had resection, THEN diagnosed 4 months later.

 

[Absentminded]

I went three years from diagnosis to my first surgery.

 

[DEmberton]

When I was diagnosed I was told I'd need surgery as soon as possible, which turned out to be six weeks. But then I think I've had this for 20 years and it was only the last couple of years where it really became a problem.

 

[The Real MC]

Initial diagnosis in 2005. First resection surgery in 2011. No surgery since then.

 

[nikimazur]

Diagnosed 4/2011, had strictureplasty 6/2011. At the time, went in for possibly resection, but found that intestine was healthy enough to keep in. My surgeon is extremely conservative, and luckily have made it close to three years without another surgery, well besides gallbladder removal.

 

[DustyKat]

My daughter wasn’t diagnosed until she had emergency surgery for an appendectomy which ended up being an ileocaecotomy. So she had 0 days between diagnosis and surgery.

My son was 4 months from diagnosis to surgery but we knew 6 weeks after diagnosis that surgery would be required.

Dusty. xxx

 

[nogutsnoglory]

From diagnosis I managed to be surgery free for 4 years. many surgeries since but hope I'm done with surgeries for life.

 

[wild_one353]

crohn's, 5 years no surgery, very little meds.

 

[Tony H]

crohn's/colitis over 30 years no surgery (so far) .

 

[SarahD]

I've had Crohn's for 14 years and had no surgery so far.

 

[Nym]

Diagnosed 1988. First surgery (peri-anal abscess) 2004. Second surgery (same abscess site, now fistula) 2006.

No plans on returning despite GI and renal spec. both saying they like catching up with me every 10yrs when I'm hospitalised for Crohn's-related issues.

 

[Rblock06]

Diagnosed 2006, disease of the duodenum, jejunum, terminal ileum, iloececal valve, so far no surgery

 

[Matrix]

Diagnosis 2001 at the same time of a surgery for bowel perforation from Crohn (terminal ileum). 10cm removed.
2007 : 2nd resection iloececal valve (stricture). 20cm removed
2014 : 3rd resection iloececal (stricture). 10cm removed

without medication I can get 5 or 6 years without too much symptoms, but the mild localized inflammation is ending up with a symptomatic stricture for 1 year before a surgery is needed. I'm about to start Humira to try to end this pattern

 

[Grotbags]

Had Crohn's for 26 years and just had my first ( and only, I hope ) surgery.
I was told by the GI nurse that it was quite unusual to go so long with no surgery, how true that is, I don't know.

 

[hawkeye]

Had Crohn's for 26 years and just had my first ( and only, I hope ) surgery.
I was told by the GI nurse that it was quite unusual to go so long with no surgery, how true that is, I don't know.

Between 23 and 24 years until the first surgery. I think we are the exception and not the norm.

 

[tincho_lavie]

0... I found out I had crohn disease during an appendice + resection surgery

 

[ronroush7]

I had trouble healing up from surgeries for hemmrhoids and a fistula. A surgeon told me that was from Crohn's Disease.

2

 

[cnt]

I was diagnosed in 91, think about 7 or 8 years after that I had my first, and then they just came in waves, 5 in a 2/3 year span. My initial surgery I was very close to dying, my ******* local doctor just used pain medicine when no drugs for Crohn's worked, he missed almost a complete blockage. When I finally went to specialist GI, who is still one of my doctors today in Manhattan, I was told another month or two and I probably would not have lived. I don't hate many people in my life, my first doctor is definitely on that list! Not only misdiagnosed the blockage, took me off prednisone too quickly and I had steroid psychosis, awful experience. Also led to my addicition to pain meds and ending up in rehab. Even now I try not to take pain meds at home.

It's killing me right now though. While I wait to see how my body does with this Entyvio, I am in so much pain. Honestly have considered throwing in the towel a few times. I hate being in these dark places, where it's so damn hard to hold on to any kind of hope!

 

[Daytripper]

Ten years and counting.....although my specialist told me she would have put me in for surgery a while ago to snip out my inflamed bit, but she said that can't be done because all of my insides are inflamed, so there can't just be one bit removed. I'm not quite sure if that's a good thing or not......but yep, ten years!

 

[fuzzy butterfly]

Hi dx 2012 1st op 2014 just less than 2yrs later. But was suffering for 3/4yrs b4 dx. ☺

 

[ronroush7]

I don't know this for a fact but I think I may have had a mild form of Crohn's Disease long before I was diagnosed.

 

[erinjayee]

I went 6years til my first surgery, a ischeorectal abscess I+D and 4weeks later a seton placement.

 

[TLF1996]

I have suffered from Crohn's for just over 10 years.

In December 2015 I had part of my bowel removed and a stoma formed.

April this year my doctors reversed the stoma and reconnected my bowel.

My doctors told me that most people love stoma's and that they ask not to have them removed.

I found the experience terrible and was glad to have it reversed.

If you're considering surgery then find out if it will be possible to reconnect your bowel.

If it's not then do a boat load of research and think very hard because it will be a life-changing operation.