Any Crohn's Disease or Ulcerative Colitis people out there?

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CAGirl
Posts: 48
Joined: Fri Aug 25, 2017 4:55 pm

Any Crohn's Disease or Ulcerative Colitis people out there?

Postby CAGirl » Wed Jan 31, 2018 1:47 pm

Hi,
I've posted this on other threads. I'm fairly certain my cancer is a result of having Crohn's Disease, even though it was in remission with a very low dose of Asacol/Lialda for 20 years. It would be too coincidental that I got this and not my identical twin (no Crohn's). That's my unprofessional opinion.
Anyway, when my very awesome surgeon did my resection, he had told me that some doctors on the panel had recommended full colon removal -- because of my Crohn's -- but that he and my GI (the one who reassured me in November that my anemia was not a sign of colon cancer since "the likelihood" of that was "very low") felt they should only remove the diseased part and monitor the rest.
Anyway, I'm about to go for my one-year follow up colonoscopy and don't know what to expect.
Actually, what I am expecting is some polyps to be removed (and hoping for no active sign of cancer). This is what could have happened had I been having regular colonoscopies in my late 30s/early 40s.
Anyone have any experience with this? Or thoughts even if you never had IBD?
Thanks!
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-month CT scan post chemo 11/17 slightly larger lung nodule (incr. from 7mm to 8 or 9mm)
follow-up CT scan 3/18 - NED!

ppanamared
Posts: 12
Joined: Wed Jun 28, 2017 5:47 pm

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby ppanamared » Wed Jan 31, 2018 6:38 pm

Wow your story is pretty close to mine..i am 40 now and had untreated crohns for about 20 years.Never thought about cancer, just figured someday the colon would need to come out. When i finally had a blocked colon, they only took so much out, not the whole thing like i wanted. Now it is still floating but i will say i love the bag and awesome stoma placement. Wish i just would have knew how much freedom i have now .I doubt it would have held back the cancer but at thus point it dont matter. Good luck with your probe:) I am sure you will do great.

menreeq
Posts: 66
Joined: Fri Jun 30, 2017 10:26 am

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby menreeq » Thu Feb 01, 2018 1:43 am

Hi CAGirl --

I'm not sure there is enough data on Crohn's patients with history of CRC and their risk for recurrent CRC. But I did find this article, which tries to answer a similar question. I didn't read the whole thing (yet), but I thought I would send the link:

http://www.cghjournal.org/article/S1542-3565(15)01304-X/pdf
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41, mom to 5 & 2yo girls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17), 0.8 (2/28/18)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics counseling negative for mutations, 4 VUS
Xeloda monotherapy 8/13/17-1/22/18
PET/CT 3/21/18 NED

Ron50
Posts: 656
Joined: Fri Feb 10, 2006 7:04 pm

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby Ron50 » Thu Feb 01, 2018 8:29 am

Hi Ca Girl,
I am 67 , I was dxed with stage 3 c colon cancer when I was 47. Prior to that I had an extensive history of IBS , peptic ulcers ,duodenal ulcers and hiatus hernia. My brother who is six years older than me was dxed in his late twenties with ulcerative colitis and proctitis. He also suffers from Barretts oesophagitis. He has a colonoscopy and endoscopy every year. He has polyps removed on a regular basis . He was expected to suffer a cancer at some stage in his upper or lower GI tract. At 73 he has suffered neither. He did suffer a prolapsed sigmoid colon and they had to build him a new rear end. Remarkably he has been on the same treatment all of his life . He takes sulfasalazine every day and on the rare occasions he has a flair he uses prednisone suppositories. The last time he went to the doctors ne saw a new gi who asked how come he is still alive as very long term UC is usually considered terminal. It appears that we both have lousy genes when it comes to our GI tract but apparently our survival genes are impeccable. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Canada777
Posts: 54
Joined: Mon Mar 28, 2016 6:24 pm

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby Canada777 » Thu Feb 01, 2018 9:59 am

HI - DH had Crohn's for about 20 years prior to cancer diagnosis. Unfortunately he did his yearly colonoscopies and still got to stage IV undetected by the colonoscopies. When it was time for surgery he took the permanent ileostomy because of the history of Crohn's and it has made things a lot easier for him to manage bathroom wise now.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX Jan-June 2016
4 month chemo break. Still only Peri mets.
Successful HIPEC Oct. 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis. FOLFIRI Sept 2017 to present.

Lee
Posts: 5601
Joined: Sun Apr 16, 2006 4:09 pm

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby Lee » Thu Feb 01, 2018 10:58 am

My understanding any inflammation of the colon (IBS, Crohn's Disease, etc) puts you at a higher risk for developing colon cancer. Butt my mother had diverticulosis, never got colon cancer, never produced a polyp. Me I had no issues, yet I was diagnosed with rectal cancer at 46. Go figure :shock:

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
GreenLakeGirl
Posts: 763
Joined: Mon Jan 18, 2010 5:55 am
Location: Pacific NW

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby GreenLakeGirl » Fri Feb 02, 2018 2:26 am

I was diagnosed with Ulcerative Colitis 13 years before my colon cancer diagnosis. The Crohn's and Colitis Foundation gives a lot of information saying that having an IBD raises your risk of colorectal cancer. They recommend yearly colonoscopies Starting ten years after diagnosis. Even if you have it controlled with medication, there can be a low level of inflammation. Some of us don't get a good response from medication like Asacol or Lialda—prednisone was the only drug that really worked for me, and that wasn't a long term solution—so for me, I'm not surprised that my UC evolved into Colon cancer.

As you probably know, your Crohn's makes the decision to get a total colectomy more challenging, since it's possible that without your colon, the Crohn's will target a different area of your digestive tract. If you do present with polyps, your surgeon may re-examine the surgical options with you. But this talk is putting the cart before the horse. :)

I'm happy to chat more if you want to bounce ideas after your scope. If you can zen out between now and the scope, I would do your best to try and do so! Easier said than done, of course.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

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O Stoma Mia
Posts: 1330
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby O Stoma Mia » Fri Feb 02, 2018 3:58 am

menreeq wrote:Hi CAGirl -- I'm not sure there is enough data on Crohn's patients with history of CRC and their risk for recurrent CRC. But I did find this article, which tries to answer a similar question. I didn't read the whole thing (yet), but I thought I would send the link:

http://www.cghjournal.org/article/S1542-3565(15)01304-X/pdf

FYI, that link didn't work for me, but this one did:
http://www.cghjournal.org/article/S1542-3565(15)01304-X/pdf

CAGirl
Posts: 48
Joined: Fri Aug 25, 2017 4:55 pm

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby CAGirl » Fri Feb 02, 2018 2:48 pm

Thank you, Everyone, for your support and stories and links.
You GUYS! You're so amazing.
Some of the info seems so obvious but yet I needed to read it again to remember or absorb it. Also, it is clear that we have shared -- and yet so varied -- experiences. One of us with IBD (or anything, for that matter) does not necessarily predict the outcome for another, etc.
Ron, info about you and your bro -- very interesting! Lee -- yes, inflammation, regardless of Crohn's or UC diagnosis, can be breeding ground. Canada -- wow! Thanks for helping me learn not to kick myself for neglecting to check up on things earlier. But also -- HOW did it go undetected with yearly colonoscopies? I'm really surprised to read that.
Ppanamared -- Thanks for your support.
Greenlakegirl -- Wow! Yes, I knew we were predisposed, but I don't know, my doc seemed to suggest it was in the FUTURE, even though I'd had CD for 20 years already. Also, I was so busy having babies, dealing with breastfeeding/mastitis/thrush, taking care of their needs, that I figured my colon was the least of my concerns. I had a sigmoidoscopy in there somewhere, but apparently that was not useful. Also, no, I didn't realize about the complete colostomy. Also, YES, low-grade inflammation can be present despite symptoms being managed. I TRULY think this was my... downfall -- not really realizing this. Thanks.
Menreeq/OStomamia -- thanks for the links!
I wish you all continued wellness, and I really appreciate those of you that have stuck around to offer support to us newbies. I hope I will be doing that some day, myself.
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-month CT scan post chemo 11/17 slightly larger lung nodule (incr. from 7mm to 8 or 9mm)
follow-up CT scan 3/18 - NED!

hawkowl
Posts: 105
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby hawkowl » Fri Feb 02, 2018 11:19 pm

I have a long history of inflammatory arthritis (psoriatic) with unspecified IBD. Had taken sulfasalizine for years, and was treated with Humira for the three years leading up to my diagnosis
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

lkub
Posts: 21
Joined: Mon Mar 14, 2016 12:14 am

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby lkub » Thu Feb 08, 2018 12:15 pm

Yes, there is a link. My husband had UC for almost 20 years. His GI suggested colon removal for the last 10 years because his chances of cancer were increased, and for quality of life.
DH-stage 3b rectal signet ring cell dx 11/15 age 41
rad/xeloda 12/15-1/16
total colectomy&ileo(jpouch) 3/16
4/16 CEA 0.6
oxali&xeloda 3/16-8/16
clean CT 9/16 NED
10/16 reversal
4/17 CEA 1.4
10/17 CEA 44.4
10/17 CT mets to nodes peritoneum pelvis-stage 4
10/17 biopsy KRAS/BRAF/NRAS wild
11/17 port
11/17 FOLFIRI+erb
1/18 Erb failed CT mets spine/pelvis
2/18 stent ureteral obst
2/18 FOLFIRI+Avastin
3/18 small bowel obstr
3/18 CEA 114
4/18 FOLFOX+Vbix FAILED
5/18 ascites
6/18 hospice
Lynch neg

CAGirl
Posts: 48
Joined: Fri Aug 25, 2017 4:55 pm

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby CAGirl » Thu Feb 22, 2018 2:01 am

Wanted to post an update that today's colonoscopy went well -- results showed no polyps, no active Crohn's and inflammation. He is biopsing a few areas to make sure there's no microscopic inflammation.
Phew.
Before the procedure, the GI doc said he didn't think the cancer was due to my Crohn's, since it didn't show as active during that colonoscopy, either.
Guess I don't need to prove one way or the other.
Now waiting for 4-month CT scan in March to check on lung nodule (and liver). Onward and upward!
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-month CT scan post chemo 11/17 slightly larger lung nodule (incr. from 7mm to 8 or 9mm)
follow-up CT scan 3/18 - NED!

SweetC80
Posts: 103
Joined: Fri Sep 01, 2017 1:28 pm

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby SweetC80 » Thu Feb 22, 2018 8:52 am

My mother was diagnosed with Ulcerative Colitis at the same time as her rectal cancer. It was her first colonoscopy, so unknown how long she had it. She was 68 at the time. We have a strong family history of autoimmune diseases and she had already been diagnosed with Rheumatoid Arthritis so it wasn't a surprise to hear she also had UC.
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

lkub
Posts: 21
Joined: Mon Mar 14, 2016 12:14 am

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

Postby lkub » Thu Feb 22, 2018 7:53 pm

My husband's GI told him for almost 20 years that he was at greater risk for colon cancer and he recommended a colectomy and j-pouch after 10 years. He was getting colonoscopies every 3 years when rectal cancer was found.
DH-stage 3b rectal signet ring cell dx 11/15 age 41
rad/xeloda 12/15-1/16
total colectomy&ileo(jpouch) 3/16
4/16 CEA 0.6
oxali&xeloda 3/16-8/16
clean CT 9/16 NED
10/16 reversal
4/17 CEA 1.4
10/17 CEA 44.4
10/17 CT mets to nodes peritoneum pelvis-stage 4
10/17 biopsy KRAS/BRAF/NRAS wild
11/17 port
11/17 FOLFIRI+erb
1/18 Erb failed CT mets spine/pelvis
2/18 stent ureteral obst
2/18 FOLFIRI+Avastin
3/18 small bowel obstr
3/18 CEA 114
4/18 FOLFOX+Vbix FAILED
5/18 ascites
6/18 hospice
Lynch neg


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