Just Diagnosed

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Gloriamazz
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Re: Just Diagnosed

Postby Gloriamazz » Wed Jul 18, 2018 11:30 pm

Do you have diabetes? My friend has gastroenteritis
Suffers awful been in the hospital many many times. She becomes violently ill.

I was beginning to wonder if I had it because of my none stop diarrhea. It is a dreadful disease.

If I need the colostomy,I will go that way. At least Iwill still be above ground I hope. I am 73 and not starting a family or looking to start one. My husband has alzheimers and is almost total care. I don't need a boy friend to look pretty for anymore.

I don't plan on going back to work with my bad Neuropathy.

I enjoy painting and may go back to the piano. I have my tuxedo cat to take care of every day. A colostomy is not going to freak me out. Maybe cleaning it will. I need one you snap off put in trash bag and pitch it.

Gloriamazz
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Re: Just Diagnosed

Postby Gloriamazz » Wed Jul 18, 2018 11:41 pm

2 months Adele it is all behind you. It was a lot of work and stress for the past couple weeks for me. I am in so much pain I had to keep the ball rolling with the MRI. Ultra sound and mri and colonoscopy. Had to take all the liquid prep..yuk. Yuk. Make arrangements for a sitter for my husband. I am totally exhausted. He is going for chemo for Myeladysplasia 2nd round today for 3 consecutive days for 3 months.

I don't know what my future holds for me but I pray its better than going to the bathroom all day and feeling like there's a switchblade fight going on in my backside

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ocstacy
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Re: Just Diagnosed

Postby ocstacy » Thu Jul 19, 2018 3:53 am

I studied U/S in college and did a course. Interesting to see different structures in bodies.. abnormal or normal. I actually found my gallstones by scanning and I have multiple gallstones and prob need my gallbladder removed soon. Thought it was my liver! Close.

Anyhow, Hypoechoic – less echogenic (darker) than normal. All I know is that is good usually and that the heterogeneous which is nickname for chocolate chip cookie is usually the not so great term. Usually means cancer lesion. Heterogenous is rough, coarse. and uneven - Radiologists look for these too. We work with gray, white, that is how they know it's cancer too. I loved that class and made me want to eat healthier. I had a fatty liver with gallstones.. also. the younger thinner girls of course had beautiful structures.. as you get older, not so much. U/S detect a lot more and it's mobile.
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

Gloriamazz
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Re: Just Diagnosed

Postby Gloriamazz » Thu Jul 19, 2018 7:33 am

I love reading successful bios. the 70’a seems to be a decade of surprises.

I generally get wrinkles for my birthday. This year on my birthday I was in a MRI space ship that was looking got cancer and goundbavwhoppervthe size of a walnut

Gloriamazz
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Re: Just Diagnosed

Postby Gloriamazz » Thu Jul 19, 2018 7:35 am

Looking for cancer. And got a whopper

Capercrohnieileo
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Re: Just Diagnosed

Postby Capercrohnieileo » Thu Jul 19, 2018 7:52 am

No I don't have diabetes fortunately though many with gastroparesis do. They don't know the cause so I'm considered idiopathic. About the ostomy, I went into surgery well prepared (I have a friend who has one too) and that helped.
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, day 46 of this hospitalization.

Gloriamazz
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Re: Just Diagnosed

Postby Gloriamazz » Thu Jul 19, 2018 5:07 pm

Talked to my surgeon today and I will also have a Barbie Butt. That is fine. No radiation or Chemo yipee

weisssoccermom
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Re: Just Diagnosed

Postby weisssoccermom » Thu Jul 19, 2018 6:02 pm

Gloria...I really know nothing about this surgery BUT.....(no pun intended).....ask your doctor about the necessity about actually sewing things shut. I have heard from a few people that that process is, in fact, more uncomfortable. Again, I am only going on what I have heard. Hopefully others with colostomies will reach out and give you their experiences about their experiences if they have had it done.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

MissMolly
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Re: Just Diagnosed

Postby MissMolly » Thu Jul 19, 2018 6:36 pm

Gloria:
Yes, your surgeon is being truthful in presenting the need for a “Barbie Butt” (surgical closure of one’s backend) if indeed your internal and/or external anal sphincter’s have evidence of cancer infiltration.

A small residual rectal cuff (without surgical closure of one’s backend) is feasible in those low rectal resections that are sphincter sparing.

If your anal sphincter’s are affected and need to be excised, a “Barbie Butt” is the wisest choice to give you the best chance for no evidence of disease.

Healing of the perianal wound can be a slow and prolonged process. Some surgeons use a wound vac post-operatively for the perianal wound.

Do NOT sit on a donut pillow/cushion. You do not want to use a donut cushion as that will cause the buttocks to separate and place strain on the perianal wound bed.

The better option is to invest in a 2 inch depth quality grade memory foam cushion with a sacral/tailbone cutout. A memory foam cushion with sacral cutout allows for distributed weightbearing without spreading of the cheeks of the buttocks when sitting. You will want to limit sitting to short periods of 10-15 minutes, only a few times a day. Standing and lying on your side will be positions of choice while healing. A long-handled reacher is handy to have to pick up low objects or objects on the floor without having to bend/lean over (which tends to spread the cheeks of the buttocks).

The advantage of having a “Barbie Butt” with surgically closed backend is that you will NOT have to endure the discomfort of having a rectal stump and the inevitable bouts of inflammatory proctitis and messy mucus poops that accompany a residual rectal stump.

The United Ostomy Association of America (UOAA) will be a nice resource to you. Individuals with Chrone’s who underwent full proctocolectomies (removal of the large intestine, rectum, anus, and anal sphincters) on the UOAA forum can give you support and advice based on their experiences. http://www.uoaa.org

Thinking of you and hoping for the best for you,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Lee
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Re: Just Diagnosed

Postby Lee » Thu Jul 19, 2018 10:59 pm

Yes my tail bone is sewn shut back there. Reversal is not an option for me, EVER!!! Rectum is 100% gone. Again best decision I made. I've cried maybe 3 times over the past 14 years because of my colostomy, I've thank GOD a million + times for helping me made the right decision and giving me my life back. Colostomy!!!

I was 2-3 months out from surgery when I was on an all day field trip for my son. One of his teacher was picking my brain. She finally told me her neighbor was diagnosed 6 month prior to me, rectal cancer. This neighbor was house bound, here I was doing a field trips 3 months out. She concluded I made the right decision, colostomy, while her neighbor could not. I was always willing to talk to this neighbor, but it never happened.

I've been told, my surgery required two surgeons. My surgeon doing her job and another surgeon working on my bottom end only. What a lovely job to have.

All the best in your decision.

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!

TerryC
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Re: Just Diagnosed

Postby TerryC » Fri Jul 20, 2018 12:26 am

Gloriamazz,

You're doing great, getting info, being brave. Keep moving forward. You have every reason to hope that you'll beat this thing!!
4/17 Diagnosed CRC Stage IV with met. to liver 30+ tumors
4/17 - 3/18 Folfox-Avastin 23 rounds, every other week
4/17 -2/18 CEA 123 to 446 down to 5 for many months climbing slowly beginning in December to 57 ~ 2/18
3/18 Folfiri-Avastin
3/18 - 6/18 CEA dropped to 12 started climbing to now, 42.7

Gloriamazz
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Re: Just Diagnosed

Postby Gloriamazz » Fri Jul 20, 2018 8:18 am

weisssoccermom wrote:If you had a colonoscopy 3 years ago and were clean, even with diarrhea, it wouldn't be that uncommon for a doctor to not order another scope. Honestly, if you have been complaining about this sporadically over the last year, the doctors DID do the correct testing for all of the common ailments first. Now, if you had never had a scope or hadn't had one for say 8 years or so....that would have been a different story.

Good luck. Let us know what the surgeon says and what the CT report shows.


Hi Soccermom,

You are correct about the colonoscopy. I asked my surgeon yesterday how long he thinks I had this walnut of a tumor and he said years.

He said it is not uncommon for the scope to miss a Polyp considering the way the scope goes in the rectum.

I have had several colonoscopys and have had doctor say removed a couple Polyps but this polyp got left behind and here I am waiting for a surgery date andtaking pain pills. I dont want to do anything going to the store is agonizing between the pain and diarrhea.

I am Type2 Stage 1. It is the location ofthe tumor and the Spinxter uscles being invaded.

Doctor said 4 to 5 days in hospital 4 weeks recovery and up to 6 mo before feel well again. He said the CANCER will be gone and probably no chemo but does not know till surgery. Doctor said 3 to 4 hrs surgery.

If I were in my 40s I probably would go the other way. All I want is to get rid of the cancer with less done to me as possible. I have thin hair but it is very pretty and listening to people say they have being burnt and damaged from radiation is not something I want to experience.

My husband has Alzheimers and a ton of extra baggage stuff that is very serious. I take care if him 24/7. He had colon cancer stage 1 no treatments 15 yrs ago.
He has myeledysplasi- low plateletts (bone marrow disease)considered a cancer type and is going for chemo for that and yesterday was his second round has 1 more to go for 3 consecutive days in a month.

He ussed tohelpat home now hewants to sleep all day and constantly has to goto the bathroom.

That is pretty much my story and now I am going toread up on the colostomy bags a d I have to go for training class at main campus in Cleveland. Lot of classes big need for training.

I have been sick for 10weeks with this disease and no fun.

weisssoccermom
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Location: Pacific NW

Re: Just Diagnosed

Postby weisssoccermom » Fri Jul 20, 2018 9:54 am

I'm not sure what you mean by Type 2....I believe you might be referring to the fact that your tumor depth is T2. As you have discussed in previous posts and that would put you as a stage I

I'm not sure which doctor told you no chemo....it's difficult to tell but PLEASE....only allow an oncologist to make that determination. Too often, surgeons will give that advice to patients, particularly early stage patients (which is what you are) and honestly, they should not. Please, whatever you do, at the very least, get a consultation with the ONCOLOGIST with respect to the determination of chemo. The oncologist will need to have both the surgical and pathological report before he/she can decide whether or not you need chemo.

You truly do sound like you have a lot on your plate. Hopefully you can get some reinforcements in while you are recuperating to help with your husband. Take it easy and right now, try to relax and build up your strength.

Wishing you the best but please (and you may have already done this)....make sure the ONC is the doctor who determines whether or not you need chemo. Did you verify that your doctor is a board certified colorectal surgeon?
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Gloriamazz
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Re: Just Diagnosed

Postby Gloriamazz » Sun Jul 22, 2018 6:01 pm

Hi Mike, Soccer Mom and Lee.

Thanks for helping me make sense out of all this medical talk.

I noticed the Ulta Sound is 1.9 I'm and MRI 4 I'm. If the sphincter muscle was not involved it could have been a reversal.

My surgeon is A board certified colorectal surgeon and he said this is the best way to go with the sphincter involved.

He said he will get all the cancer and possible chemo but don't need treatments they give for restructure should be easier on me.

I am 73 not having family and will be easier for me

I know will need to adjust. Can you tell me your experiences with colostomy? Thank you

Gloriamazz
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Re: Just Diagnosed

Postby Gloriamazz » Mon Jul 23, 2018 9:33 am

Hi Lee I have both an oncologist and board certified surgeon. They both. Come highly recommended

My surgeon is in vacation this week after that he will do surgery.

I have to go to a colostomy talk

Pain ok today last 2 days was horrible.

I havelow energy and get nauseated


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