My daughter is facing colon removal for non-cancerous reasons

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Farmfresh
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Joined: Fri May 18, 2018 12:30 am

My daughter is facing colon removal for non-cancerous reasons

Postby Farmfresh » Fri May 18, 2018 12:44 am

Anyone out there dealing with colon removal due to the colon simply not functioning? My daughter is 32 years old, Celiac and has had some pretty significant digestive issues for a long time. She does not have cancer or any tumors that we know of. Currently her colon is just not working to move the food along. She is in a state of almost constant constipation and pain. The doctors are talking about a complete removal of her colon.

I am hoping to get more information about all of this stuff and figured this site looked like a good place to start.

SteveNZ
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Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: My daughter is facing colon removal for non-cancerous reasons

Postby SteveNZ » Fri May 18, 2018 2:52 am

Farmfresh wrote:Anyone out there dealing with colon removal due to the colon simply not functioning?
..................
I am hoping to get more information about all of this stuff and figured this site looked like a good place to start.


Hi Farmfresh,
I feel for you and your daughter. I cannot share much but do have a very good friend who had most of her colon removed due to extreme diverticulitis. She shared how that she was in awful pain for many years. And also had constant infection that came with diverticulitis.
She advises that she certainly has a far better life now.
So such an extreme solution is not out of place and helped my friend out.
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
August 27th-November 2018 - Surgery and long, long recovery
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

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O Stoma Mia
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Location: On vacation. Off-line for now.

Re: My daughter is facing colon removal for non-cancerous reasons

Postby O Stoma Mia » Fri May 18, 2018 4:13 am

There are several non-cancer reasons for doing a total colectomy. Some of them are described below.

What is your daughter's diagnosis?

Colectomy
https://en.m.wikipedia.org/wiki/Colectomy

Farmfresh
Posts: 3
Joined: Fri May 18, 2018 12:30 am

Re: My daughter is facing colon removal for non-cancerous reasons

Postby Farmfresh » Sat May 19, 2018 4:39 am

They are still trying to really nail down the diagnosis. They believe that her Celiac syndrome is a big part of why her colon does not work properly. She is in the hospital undergoing more testing as we speak.

My daughter is Celiac and wheat allergic to the point that she must carry an epi-pen. Every contact with wheat in her past has caused damage to her digestive system and she was undiagnosed allergic until she was in her 20's. She ate wheat daily until then. So far she has lost her gall bladder and been through multiple surgeries to repair damage to her bile duct. The last one was an open liver surgery to reroute the duct which kept blocking and was even sending her into liver failure.

She has been suffering from constipation issues since her late teens, so the colon has most likely been a problem since way back then. Currently in order to even pass anything she is on two Linzess a day in addition to a high dose of Mira-lax. This combo allows her to go at least some every day.

Capercrohnieileo
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Re: My daughter is facing colon removal for non-cancerous reasons

Postby Capercrohnieileo » Sun May 20, 2018 9:43 am

I had a total proctocolectomy (colon and rectum) because of fistulas and Crohn's disease. I have a much better lufe now except I now have severe gastroparesis (not brcause of surgery ) which is vrry frustrating.
Severe Crohn's colitis jan 2015
Developed fistulas feb 2015
Open total proctocolectomy with end ileostomy (bye bye colon and rectum hello barbie butt) because of fistulas, Crohn's and crc risk May 5, 2017
Gastroduodenal Crohn's Nov 1, 2017
Severe Gastroparesis (delayed gastric emptying) Nov 9, 2017 GES showed 70 % remaining in stomach at 4 hrs. Normal is <10%
Jejunostomy (J tube) surgery Oct 17, 2018.
Didn't go so well. Small bowel obstruction found Oct 26, 2018.

Farmfresh
Posts: 3
Joined: Fri May 18, 2018 12:30 am

Re: My daughter is facing colon removal for non-cancerous reasons

Postby Farmfresh » Sun May 20, 2018 4:37 pm

During this hospital stay she has had a gastric emptying test. Normal. An endoscopy - hiatal ulcer but otherwise normal. A colonoscopy - no movement of the colon, but otherwise looks perfect. A CT scan, which shows her bile duct and liver are normal but with lots of scar tissue from her past liver surgery to correct bile duct blockage. And a sonogram where they found three ovarian cysts. A OBGYN has determined with further testing that the cysts are not the pain source, but she is still having pain on her right side. AND her colon won't work.

So... more testing. Anyone out there have anything like this. We are searching for ideas, before a colon removal. It seems like there must be something causing all of this. We just want to find it.

It is comforting to know however that life can be normal after a colon removal. She is just so young. I hate for her to start losing essential body parts.

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

Re: My daughter is facing colon removal for non-cancerous reasons

Postby Canada777 » Sun May 20, 2018 9:08 pm

Hi - DH has had chron's since he was a child and diarrhea was more his issue. Constantly running to a toilet. He has had his entire colon removed now. He is much happier this way. The bag is manageable for him and he is able to gain weight again. He was 30 when he had the surgery. Oddly enough we were given a big list of " foods to avoid" when your colon has been removed because they could cause blockages. He slowly experimented with them all and eats whatever he wants now with no issues. We always wondered if maybe his small bowel had been compensating for his large bowel most of his life since he's had digestive issues since he was 7. Not sure if any of that is true...just our thoughts.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX & then successful HIPEC in 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis 9 months later.
Years of chemo.
At rest. Sept 2021.

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O Stoma Mia
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Location: On vacation. Off-line for now.

Re: My daughter is facing colon removal for non-cancerous reasons

Postby O Stoma Mia » Mon May 21, 2018 12:22 am

Farmfresh wrote:...Anyone out there have anything like this. We are searching for ideas, before a colon removal. It seems like there must be something causing all of this. We just want to find it....

Could it be due to long-term over-use of laxitives? Maybe excessive use of laxitives over the years has caused the colon to become lazy, and now it refuses to work any more. Has the doctor ever mentioned this?
.
Lazy Bowel Syndrome
https://www.belmarrahealth.com/lazy-bowel-syndrome-causes-symptoms-treatment-diet/

DarknessEmbraced
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Location: New Brunswick, Canada

Re: My daughter is facing colon removal for non-cancerous reasons

Postby DarknessEmbraced » Thu May 24, 2018 7:37 am

I'm sorry you and your daughter are going through this!*hugs* I hope her surgery goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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