Crohn's Disease Forum » General IBD Discussion » Crohn's Polls » How long did you manage without a operation

View Poll Results: how many years passed until your first surgery or without one
0-4 29 33.72%
4-7 10 11.63%
8-12 11 12.79%
13-18 8 9.30%
19+ 8 9.30%
I didn't have a surgery but the above time passed 20 23.26%
Multiple Choice Poll. Voters: 78. You may not vote on this poll

05-16-2014, 01:24 PM   #1
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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…

Last edited by 743; 05-18-2014 at 09:54 PM.
05-16-2014, 01:47 PM   #2
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I wonder what that test was? What type of surgery?
05-16-2014, 02:07 PM   #3
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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.
05-16-2014, 02:10 PM   #4
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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!
05-16-2014, 02:13 PM   #5
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no it sounded more like a estimate.
05-16-2014, 02:14 PM   #6
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Location: Toronto, ON, Canada

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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.
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-16-2014, 04:20 PM   #7
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Location: ottawa, Ontario

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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...
07-24-2014, 06:50 PM   #8
Join Date: Nov 2013

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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.
07-24-2014, 07:21 PM   #9
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Location: Miramar FL

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From diagnosis of Crohns it was 2 weeks. but from first flare up it was 5 weeks till i got a total colectomy
What happens to a dream deferred?
Does it dry up like a raisin in the Sun?
Or does it explode?

Crohns Disease
DX June 2014
Total Colectomy July 2014
07-24-2014, 07:55 PM   #10
Cross-stitch gal
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Location: Vancouver, Washington

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As of next month, August it'll be 18 years since I was first diagnosed. No surgeries to date...
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday

UP Support Group
07-27-2014, 01:06 PM   #11
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Location: Fort St. John, British Columbia

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I had less then 2 months from diagnosis to open surgery.
10-24-2014, 11:26 PM   #12
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Join Date: Jul 2014
Location: Blue Springs, Missouri

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Had resection, THEN diagnosed 4 months later.
Resection - June 10, 2014
Crohn's diagnosis - October 21, 2014

Pentasa: 4 grams/day (since 10/23/14)
Iron: 10 grams/day
B-12 injection: monthly
10-25-2014, 03:39 AM   #13
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Join Date: Nov 2009
Location: Bristol, United Kingdom
I went three years from diagnosis to my first surgery.

Lucinda x

Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
10-25-2014, 10:11 AM   #14
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Location: York, United Kingdom

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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.
Diagnosed May 2014
20cm Terminal Ileum and Ileocaecal resection July 2014
125mg Azathioprine
10-26-2014, 12:46 AM   #15
The Real MC
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Initial diagnosis in 2005. First resection surgery in 2011. No surgery since then.
10-26-2014, 07:40 AM   #16
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Location: New Jersey

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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.
Original Dx: April 2011

Crohn's, Traumatic Brain Injury, Autoimmune Hepatitis (May 2014)

Current meds:Bactrim DS, Azathioprine, Entyvio, levbid
Past meds: Pentasa, Lialda, Prednisone, Entocort, Asacol HD, Prilosec, Lomotil, Lotronex, Nexium, Myfortic, Humira
10-26-2014, 02:12 PM   #17
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Location: New South Wales, Australia
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
Mum of 2 kids with Crohn's.
10-26-2014, 08:43 PM   #18
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Location: New York

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From diagnosis I managed to be surgery free for 4 years. many surgeries since but hope I'm done with surgeries for life.
10-26-2014, 10:12 PM   #19
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Join Date: Sep 2009
crohn's, 5 years no surgery, very little meds.
Learn How Fecal transplants restore good bacteria that regulate inflammation to induce remission and how it has potential to be a cure for IBD in the future. Follow the link below.
10-27-2014, 05:51 AM   #20
Tony H
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Location: Cobh, Ireland
crohn's/colitis over 30 years no surgery (so far) .
Diagnosed with colitis/crohns 30 years ago .
currently sporting a stoma called IGOR

emazole 40mg daily
10-27-2014, 07:41 AM   #21
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Join Date: Feb 2012
Location: Cambridge, United Kingdom
I've had Crohn's for 14 years and had no surgery so far.
Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.

Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
12-20-2014, 05:11 PM   #22
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Join Date: Sep 2014
Location: Wollongong, New South Wales, Australia
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.
12-27-2014, 06:12 AM   #23
Join Date: Jan 2014
Location: Williamson, WV

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Diagnosed 2006, disease of the duodenum, jejunum, terminal ileum, iloececal valve, so far no surgery
01-01-2015, 01:11 PM   #24
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Location: Quebec City, Canada, Quebec

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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
01-04-2015, 05:06 AM   #25
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· Stoma
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.
I got a dog for my husband
It was a fair swap

Crohn's since 1988
Ileostomy since 12/12/14 and loving it.
Med free for now
01-04-2015, 08:43 AM   #26
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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.

Diagnosed since 1990
Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
10-31-2015, 11:44 PM   #27
Join Date: Sep 2013
Location: Buenos Aires, Argentina

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0... I found out I had crohn disease during an appendice + resection surgery
11-01-2015, 01:06 AM   #28
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I had trouble healing up from surgeries for hemmrhoids and a fistula. A surgeon told me that was from Crohn's Disease.

Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-01-2015, 05:40 AM   #29
Join Date: Oct 2015
Location: Washingonville, New York

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· Stoma
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 asshole 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!
11-01-2015, 09:04 AM   #30
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Location: Staffordshire, United Kingdom

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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!

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