I didn't have cancer, but I had dysplasia and 4 DALM lesions, so my risk was very high. I didn't feel sick, and I didn't know I had ibd, so it was a huge shock.

I has dysplasia throughout my colon, plus PSC, so it was basically a matter of time before cancer.  

Hello 👋🏽 👋🏽 Yes “me too” . I was diagnosed with colorectal cancer stage 2 in Emergency hospital in 2013 and had my jpouch in 2014 all before turning 50. Not many other cancer members here to connect with or where I live here in the PNW. Very sucky experience but it’s great to be alive tho I wish my diet was less restrictive. I’ve had a few other issues to complicate my health- gall bladder out in 2019 and a few car accidents 😎. I work FT and enjoy lots of sports - including ice skating- so it’s interesting working around potty time. 🤣Hope you’re doing well and still cancer free- woo hoo! 

I was 44 in 2005. Doing great. Had some set backs with pouchitice but I am still alive and just moved my daughter to Kansas. She got a softball Scholarship to Fort Hays State University. Before my total colonectomy surgery (jpouch) I didn’t think I would get to see her graduate from high school. Thanks to God and my surgeon Dr. George Moro I’m still alive and well. Takes awhile to get used to the new bowel movements or as one member told me the grenades. Never could figure that one out until I got home and had to take a shit. 

Keep the faith and God Bless!

Executive Master

Brent Ellison from HB, CA

714-899-1000

I had cancer in the descending colon. 

I had dysplasia at age 29 after 20 years of UC from ages 9-29.  I was told at that time that dysplasia + 20 years plus of continual UC inflammation = very high cancer risk.  Colon had to come out.

I was diagnosed with colorectal cancer after many, many years of (mostly quiet) ulcerative colitis. My J pouch is four years old. 

No cancer, but like others here I had dysplasia after ~17 years of colitis and it was only a matter of time. 

Hi, i had stage 2 cancer in 2013, pouch 2014. I have Lynch Syndrome.

I'm having problems lately with lots of tummy pain, not sure if its pouchitis or gallstone xx

Yes, I was diagnosed colorectal cancer back in 1995 when I was 41, after 20 years of ulcerative colitis.  Had to have a total colectomy and then chemo and radiation, so I lived with an ileostomy for a year until I got the j-pouch.

I'm still around, considered in good health, and the pouch is still in good shape. But I often feel lousy, only because I often feel like I have to poop, and I sometimes get leakage! I rarely feel  "finished",  and often experience butt burn. But no one would suspect the silent suffering I go through as I'm very active and "grin and bear it".

I think part of my problem is that I eat too much at a time, even though it's only healthy food. What goes in must come out!  As I'm enjoying too much of a good thing, I know I'll be suffering later, and I do! I'm addicted to food, even though I'm quite slim. I wish I had more self control re food because I think I'd do much better with my pouch.

@LV2Hike posted:

I'm addicted to food, even though I'm quite slim. I wish I had more self control re food because I think I'd do much better with my pouch.

Well, it's better to be addicted to food and quite slim than addicted to food and overweight.  I agree with your post that eating habits with a J Pouch can become problematic especially over time.  I did not develop inflammation in my neoterminal ileum until 15 years after getting the J Pouch and this was suspected to be due to backsplash stool from the J Pouch.  If I ate less, there would probably be less backsplash and less inflammation.  My GI has a theory that the backsplash stool causes pooling of stool at the J Pouch inlet, which seems likely especially if one overeats, and this causes SIBO, and the SIBO causes the inflammation.  And my most resistant inflammation is and was concentrated at and above the J Pouch inlet. At that time, he told me to watch sugar and carbs and I vastly reduced my consumption of both, which I believe has made a difference.  Eating less probably would help as well.

To me the symptoms you describe sound like low grade pouchitis.  Have you been scoped recently? As a cancer survivor you should be scoped every year. Leakage (especially at night), feelings of incomplete evacuation, and increased urgency are, for me, the hallmark pouchitis symptoms.

@CTBarrister, I've been scoped many a time over the years, and my problem was usually due to a stricture, or so my surgeon told me over the years, which was dilated during office visits.  But it didn't quite make a difference, which is why I'm pretty sure it's due to food volume.
Two years ago I had a full workup with the King of Pouches, Dr. Bo Shen, at the Cleveland Clinic and he said I had Paradoxical Contractions (as well as a bit of a Floppy Pouch)  and needed 10 straight sessions of Physical Therapy, which I did.  I had learned that I wasn't using my pelvic muscles properly to properly evacuate.  So even though I'm more mindful now of evacuating properly, I still have problems which is why I'm sure it's from too much food volume and also because of my minor Floppy Pouch.
Dr. Shen did not find any strictures at that time.  Now that he is in NY and much closer to me than the Clinic in Ohio was, I must make an appointment with him,  but Covid interfered with a lot of plans.
In all of Bo Shen's literature, it is stressed to eat SMALL meals!  I would join an overeaters anonymous group but they would look at me funny because I'm on the thin side, heh.  Maybe if there are enough people in this group who have the same problem with eating we can all give each other encouragement. 

@LV2Hike posted:

In all of Bo Shen's literature, it is stressed to eat SMALL meals!  I would join an overeaters anonymous group but they would look at me funny because I'm on the thin side, heh.  Maybe if there are enough people in this group who have the same problem with eating we can all give each other encouragement.

I have read the same thing and I am also guilty as charged on not following this game plan.  The two foods I can never seem to eat in moderation are pizza and ice cream so I tend to avoid eating them altogether, because I know if I start eating I will not be able to stop.  That being said, last week my firm ordered a few pies as takeout from some new local pizzeria and I managed to limit myself to trying just one slice. I can't even remember when I last stopped eating pizza after 1 slice.  It helped that it was somewhat average New Haven style pizza, which is what we eat in this area of Connecticut.

Haha, I've always felt that it's better to eat no cookies or chips at all than to just eat ONE!  I have a different problem with the Pouch than I had with UC.  If I eat nothing at all, I do much worse, as everything becomes pure liquid and I have no control, so it leaks out.  I was actually doing great with UC when I was diagnosed with cancer, being better able to control my bathroom trips with controlled eating, or no eating at all. I couldn't believe the cancer diagnosis and went for two more opinions.  The GI who I saw last, and who had a great reputation, told me that if I don't get my colon removed, I'd be dead the following year.
Well, that got me to take it seriously and it was a more advanced than he thought it would be.  It went into two lymph nodes, but my surgeon told me that under 4 lymph nodes is like no lymph nodes, and he prepared my intestines by meshing it to the side, keeping it out of the line of radiation, so he could do the pull through about a year later, after finishing radiation and chemo.
Well, it's good to be alive 25 years later, fully functional, except for my lousy bathroom problems, which this group can relate to.  I'm still trying to figure out that perfect diet, lol!
Every day I have great hours, but I also have lousy hours.  It is what it is. 
I should add that I usually take two Imodium a day, one in the morning and one at night, and also drink Metamucil or Psyllium Husk fiber here and there on a daily basis, which firms things up, but sometimes I wonder if it firms things up too much which makes it harder to get out.  Eventually I'll figure it out, like maybe in another 10 years, haha.

@LV2Hike posted:

Well, that got me to take it seriously and it was a more advanced than he thought it would be.  It went into two lymph nodes, but my surgeon told me that under 4 lymph nodes is like no lymph nodes, and he prepared my intestines by meshing it to the side, keeping it out of the line of radiation, so he could do the pull through about a year later, after finishing radiation and chemo.

Interestingly, in 2015, I had papillary thyroid cancer that metastasized into 2 lymph nodes, which they called stage 3 cancer.  My surgeon did a thyroidectomy and removed the two lymph nodes. I also had radiation in the form of radioactive iodine.  I asked my surgeon how he identified the lymph nodes where the cancer went and he told me they have a different, bluish color.  Thyroid cancer of course has a much higher 5 year survival rate than colon cancer, which is largely due to the highly effective treatment of surgery plus radioactive iodine, which is absorbed by and kills any remaining thyroid cells in your body.

It's good to hear you have had 25 years after surviving colon cancer. Many are not so fortunate.

I’ve had my jpouch since 2014 after stage 2 colorectal cancer. Not fun with young kids running around! 🤪 and like we all do, spending  way too much time on the toilet. So I recently made some dietary changes you might want to also try? I started intermittent fasting and is has been great! Not as many midnight poo’s cause I stop eating by 8 pm- which is it not easy. Also, I also switched to whole grain pasta and flour , cut out seltzer water,  which has greatly reduced my gas. Basically fodmap joins forces with being vegan! 🤩 I guess we’ll never be “normal” again, but we can thrive in our own way. I really enjoy hearing everyone’s  stories and fixes-  Good luck all.

Yep diagnosed with Lynch Syndrome in march 2013, cancer in August 13,  temporary stoma with j pouch formation. 😁

i've had my j pouch due to severe uc/chron's since 1999.  tomato sauce makes it worse.  also big meals dont help.  i have switched to stelara and my toilet visits has decreased from about 15-20 to 6-10 per day.  at night from 3-5 to 1-2.  it has definitely improved my life experience.  only problem now is inflamed lungs but life goes on.  dave.

Hi. 58 yr old. No UC. Had GI bleed and they found cancerous rectal polyp and a sigmoid mass that was cancer. And colon full of polyps. Genetic mutation i1307k. Had total proctocolectomy December 2020 and last week had ileostomy take down. CEA levels low, no liver lesions, all nodes negative so stage 2a. Learning to know when to poop. Bottom is swollen and sore (hemorrhoids). I see that this is a group of monthly IBD folks but the info is helpful. As a doc, this is hard being on the other side. And I had kidney cancer 10 years ago so yeah that adds to the stress and anxiety.

Meant “mostly” not monthly.

Hello, I am 54 years old. I had rectal cancer. I was diagnosed at age 42 on October 31, 2008. I was told it was Stage 3 at the time but after surgery and doctor was able to look closer, it was a Stage 1. I also was able to avoid a permanent colostomy. I did go through 28-days of radiation and had carried a bag with my chemo for 5-1/2 weeks. I had gone to see a doctor when I first noticed the blood in 2003. The doctor I saw at the time told me it was most likely hemorrhoids. I went home thinking I would be okay. I was adopted and had no family history to share. I should have been more proactive but at that time I had one daughter graduating from high school and my first grandchild on the way. Like so many women, I put my health on the back burner. In the last few years I have had a few issues with my system including pouchitis for the first time in 2020, unpleasant. I do not eat much but seems more poop comes out than the amount of food I put in.

I am thankful for all the help I have received on this site from so many great people. It makes one feel not so alone.

I hope you are doing well.

Barb

I has dysplasia throughout my colon.  My surgeon was amazing and had my two surgeries 2012.  I wish I had known more about the jpouch from GI doctor.  Cuz I do not think I would have went with the jpouch.  I have cuffitis really bad!!   I am just tired of not having the chance to decide another option when they found dysplasia.  my grandmother died of colon cancer.  So I guess it’s true it’s hereditary.    

Early last month I surrendered my colon and rectum due to a 20 year old case of UC

i had extensive high grade dysplasia in my rectum and it would be a matter of time before cancer.

after having step 1 of 2 so far, I cannot imagine waiting to do this as I get older

eric

PS I hate this temp osteomy

Live in the PNW, Stage 3 Colorectal Cancer & Lynch Syndrome, diagnosed at 33 in 2007.  Glad to be alive, but it can be tiring and difficult for sure.

Nice to see folks on this forum with the same background, its helpful to remember that you are not alone in your experiences.

hello. writing this from my hospital bed after an emergency surgery for an unknown tissue attached to my small intestine. 2 years ago, I had my colon removed and was lucky to have my surgeon here who walked to give me another chance with my j-pouch . I had rectum cancer because of FAP and the polyp was closing the way too much. I remember not being able to poop for two weeks and it was hell. I had a two step surgery with a two months long loop ileostomy. I remember crying when i first got my ileostomy because it was pain. i was to underweight so i had leaks everyday and couldn’t even sleep. after my takedown surgery though, i’ve returned to college, started to live again. it was horrible for the first couple of months with itching and diarrhoea but now  that i know my pouch, we get along fine. of course it’s by no means normal but at least i’m alive from a disease that took too many people from my family. and of course i’m all new with this and noone to talk to here about what happened because i was 19 when diagnosed and there aren’t many patients in my age. i guess i typed too much but having this ng tube on my nose makes me dizzy so i guess i’m just countering it. sorry if i blabbered, have a good day all of you..

I also had rectal cancer...never had UC.... was diagnosed at age 42...colon had hundreds of polyps so it had to go...I am 8 months post takedown and have my first scope coming up soon....COVID has postponed all my check ups and so far things have been getting better....still can’t sleep more than 3 hours but I’m alive.....14+ BM’s a day gets exhausting....