Needing some feedback

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Colons.Are.Crappy
Posts: 1
Joined: Mon Aug 21, 2017 5:30 am
Facebook Username: Jess.meg

Needing some feedback

Postby Colons.Are.Crappy » Tue Aug 22, 2017 1:45 pm

Hi everyone, I'm new to this, but I've been having anxiety for months so I figured it would be nice to talk to people who have possibly experienced the same things as I have.
My story/ history:

I always had stomach issues, even as a child. When I was ten years old ( 11 years ago, I'm 21) I had a bowel movement and discovered my toilet was full of blood. My doctor thought it may be crohns, I had a colonoscopy and they discovered I had polyps. I also had hemorrhoids, which may have caused the blood. - the doctors did not remove my polyps as they said it wasn't much of a concern.

About 8 months ago I started having stomach pains ( mild) , mostly just fits of diarrhea and constipation. It gradually got worse, I had /have more constipation more than anything now, very extreme to the point where I have to manually remove stool, sometimes they are very hard pellets other times it may be soft stool ( which makes me wonder if I'm experiencing lazy colon?) it sort of feels like the muscles are weak. I have so much mucus, and at times bloody mucus, I experience quite a bit of blood in my toilet as well as on tissues and my fingers ( when manually removing stool) the blood on the tissue can sometimes be bright pink or deep red. My stomach pains are at an all time high, no matter what I eat, gluten free, dairy free, I still get pains. I'm definitely noticing a pattern of having pains after I eat however this isn't always the case as sometimes they happen randomly. I am extremely fatigued, I spend most days in bed which has had a major affect on my life, but I feel too weak to do anything, my body feels like it's wasting away. When I managed to pass a BM it is unusually thin, like a pencil which has never happened to me before the past few months. At times when I manually remove stool it feels like there is a growth or blockage in my butt, a little deeper in, I am concerned.
Another issue would be the fact that I always have the need to use the washroom but then I feel 'empty'
I have an colonoscopy booked for Aug 31, I've been waiting for months so I should be excited as it's almost here, however everyday is getting harder. Im considered I have colon cancer, despite my age, it happens.

*** This is me venting / hoping for feedback, thanks for anyone who reads and gives me input***
- [ ]

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Needing some feedback

Postby veckon » Wed Aug 23, 2017 10:02 am

First of all, I want to commend you for seeking treatment and getting that colonoscopy booked.

Have you been tested for Lynch Syndrome? How many polyps were found when you were young, and if you can't remember, perhaps your parents can? If they were numerous but very small, that may indicate another inherited condition called familial adenomatous polyposis. Bring all of this up to your GI, because developing polyps at age 10 is not normal, cancer or not.

When you say stomach pain, can you be more specific? You mean your actual stomach or could it be colitis-like pain in the intestines? Either way, emphasize this to the GI.

Stool that is consistently thin like a pencil indicates your bowels are inflamed. This does not mean it's cancer causing this. There are so many other GI diseases that could be causing it, so don't obsess about the possibility of cancer. All GI diseases suck and are debilitating.

The excess mucus also does not necessarily mean cancer, as normal colon cells are covered with mucinigens by default. If you have some colitis-like issue, that could stimulate excess mucus production.

Good luck with the procedure, it's nothing to be afraid of.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Needing some feedback

Postby DarknessEmbraced » Wed Aug 23, 2017 10:30 am

I'm sorry you're going through this but glad you're getting a colonoscopy!*hugs* I hope your prep and colonoscopy go 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! :)

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Needing some feedback

Postby susie0915 » Wed Aug 23, 2017 11:45 am

I'm so sorry you're experiencing this at such a young age. You will have some answers after your colonoscopy, and hopefully can begin what is necessary to help you feel better and take care of what is going on. Good Luck and prayers.

Susie
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Needing some feedback

Postby NHMike » Wed Aug 23, 2017 6:07 pm

I'm sorry that you have to deal with this at your age.

I went to the Emergency Room because of a lot of blood in the toilet and had some of the problems that you had with going to the bathroom. They did a CT Scan and found the mass and then did a colonoscopy to get the biopsy. They did this all in the same day (it started at 2:30 AM and I was back home around 8 PM). I was lucky in that the GI guy was in the hospital that day and he had time to fit me in.

In general, colorectal cancer usually shows up later in life, 40s, 50s and beyond. When someone young has it, it may be Lynch Syndrome.

http://www.cancer.net/cancer-types/lync ... omeprinter

One thing to look at would be your family tree to determine whether or not you might have this inherited problem. If you do have Lynch, then there are targeted drugs for it.

We can't really say whether or not you have cancer and you're only a week away from the colonoscopy. You might ask your doctor, though, if they could do a CT scan as hospitals can often schedule those quickly and they usually have the results back the same day. I do hope that you don't have cancer.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Needing some feedback

Postby Steph20021 » Mon Sep 04, 2017 12:37 am

Any results yet on your colonoscopy?
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Needing some feedback

Postby Lee » Mon Sep 04, 2017 2:32 pm

Colons.Are.Crappy wrote:
I always had stomach issues, even as a child. When I was ten years old ( 11 years ago, I'm 21) I had a bowel movement and discovered my toilet was full of blood. My doctor thought it may be crohns, I had a colonoscopy and they discovered I had polyps. I also had hemorrhoids, which may have caused the blood. - the doctors did not remove my polyps as they said it wasn't much of a concern.

- [ ]


Did the doctor say WHY s/he DID NOT REMOVE the polyps? That to me seem highly unusual.

Glad you are getting scoped again.

Keep us posted

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 - 16 years and counting!


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