Just Diagnosed

Please feel free to read, share your thoughts, your stories and connect with others!
NHMike
Posts: 2458
Joined: Fri Jul 21, 2017 3:43 am

Re: Just Diagnosed

Postby NHMike » Tue Jul 17, 2018 3:35 pm

My surgeon told me a few weeks ago that she could always do a colostomy if it was too hard with the reversal.
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

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Just Diagnosed

Postby MissMolly » Tue Jul 17, 2018 6:15 pm

Gloria:
IF it is determined that a colostomy is recommend by your medical team, do not despair.

Negative stereotypes of ostomies abound: Portraying people walking around with full “bags” of fecal matter attached to their abdomens; reserved only to the aged and elderly; wearing unsightly “bags” that dangle past one’s knees; “bags” that make embarrassing noises rustle and crinkle; problems with leaking and putrid smells. Nothing could be further from the truth.

Few people realize that ostomies are life saving procedures that span every age group, including infants, children, adolescents, young adults and onward. People with inflammatory bowel disease (Chron’s and ulcerative colitis) may opt for a permanent ileostomy for quality of life reasons and when/if available medications and biologics fail to tame severe inflammation. People who suffer pelvic injuries in an automobile accident or a gunshot wound may have need for an ostomy. Infants with hereditary-based slow intestinal motility may have need for placement of an ostomy. Other people with dysfunction of pelvic floor muscles/coordination and problematic constipation may opt for an elective ostomy. The point being: Placement of an ostomy saves lives of people of all ages and across a broad spectrum of underlying causes.

The array of ostomy products available today reflects advanced design and comfort. There are, literally, hundreds of ostomy products available to choose from. The water of an ostomy adheres to the skin by virtue of the body’s natural warmth that reacts to the hydrocolloid matrix. The bond of a wafer correctly applied is 100% waterproof and air-tight. While leaks do occur, they are more an exception than the rule. Pouches come in different sizes - everything from a 5 inch mini-pouch to a 16 maxi-pouch.

I wear the Coloplast Mio. Its wafer has elastic polymers embedded in the hydrocolloid matrix, producing a low profile and pliable wafer that moves as the body moves. Practicing yoga is no problem. Most days, I rarely even notice my ostomy.

Those with a colostomy have the option of using single-use closed-ended pouches. Closed-ended pouches provide a hassle free option for fecal management. After a bowel movement, simply remove the pouch, place the sealed pouch in a plastic Ziplock bag or similar, and toss into the trash. Easy peezy.

For many colostomates, their bowel frequency and timing remains the same/similar to pre-surgery. Ex. A person who had a bowel movement once a day in the morning may find that this same bowel pattern continues post surgery. This makes using the closed-ended pouch a desirable option. After the bowel movement, take off the used pouch, seal the pouch and place in a plastic bag and place in the trash, and place a new/clean pouch for the day. Irrigation is also an option for those with a colostomy. Irrigation provides for an option to go pouch-free or use of a stoma cap.

I have had a permanent ileostomy for about 7 years. My stoma resides on my abdomen and looks like a small flower bud. It is not unsightly nor gross to look at. Changing my ostomy pouch has become as routine as brushing my teeth. I take a “naked” shower (no pouch on) and it feels refreshing to have water run over the stoma. I am a small/petite person and wear a small 5” ostomy pouch. It is low-profile and lies flat against my abdomen. No one would know that I have an ostomy unless I told them.

Having an ostomy is not all rainbows and unicorns. There is a period of unsettled emotions for almost everyone with a new ostomy. Adapting and adjusting is a process. Finding the best ostomy pouching system for each person takes time, experimenting with different products and brands available.

The United Ostomy Association of America (UOAA) offers an online support forum that is similar to this colon cancer forum. The UOAA forum was a life-line to me during the early post-operative week’s with my ileostomy. People helping people. Do not hesitate to visit the UOAA support forum and read/browse through the threads or pose a question to the group. The forum is empathetic and caring and able to answer almost any question related to ostomy care.
http://www.uoaa.org

Sending you positive karma and healing energy,
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.

Gloriamazz
Posts: 70
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Just Diagnosed

Postby Gloriamazz » Tue Jul 17, 2018 6:20 pm

Thank you for your post :roll:
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

Gloriamazz
Posts: 70
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Just Diagnosed

Postby Gloriamazz » Tue Jul 17, 2018 8:51 pm

If the tumor shrinks with radiation, could it free up space on the analverge so there is room to work reconstruction and not have a bag.

Although reading about maintenance of a bag from this group seems sanitary and not gross.

This incorrigible pain just started the first week of July and I have had diarrhea off and on for a year. I did try to get help from the doctors but they tested for wrong causes.

I do have an appointment this Thursday with surgeon and I am very scared. It is so painful.
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

NHMike
Posts: 2458
Joined: Fri Jul 21, 2017 3:43 am

Re: Just Diagnosed

Postby NHMike » Tue Jul 17, 2018 9:46 pm

My tumor was so big that it popped out from time to time. The measurement of 5.? cm from AV was done after chemo and radiation. I don't recall what (or if) the measurement was before chemo and radiation. I think that your question is one for the radiology oncologist.
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

weisssoccermom
Posts: 5965
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Just Diagnosed

Postby weisssoccermom » Tue Jul 17, 2018 10:57 pm

Gloria,
If you want honesty then I will give it to you. Considering what your MRI report stated with respect to the sphincters being invaded, I highly doubt that even with a
100% shrinkage from chemoradiation, any surgeon would be able to reconnect you. Again, I am NOT a doctor, only a survivor who has been on this board for 11+ years. There are two factors which determine whether or not the surgeon can reconnect. The first is the distance and 1.9 is bordering on the lowest distance to date which (1.5 - 3) are usually considered for ultra low LAR surgery (Lower Anterior Resection). The second is the amount of invasion into the sphincters. As I said earlier, there are TWO sets of sphincter muscles...the interior and the exterior. Its definitive (based on MRI report) that your interior ones have been infiltrated by the tumor and the MRI report states that (if I remember correctly) that it appears that the tumor has infiltrated the very thin layer of fat between the internal and external sphincters. IF a tumor has invaded into the external sphincter, I truly don't believe any surgeon (again, my opinion) would even consider trying to reconnect. Simply, the surgeon has to have SOMETHING to reconnect to and radiated tissue makes it more difficult for a surgeon to connect. There is one thing that I truly have no idea about. That is that it appears that your tumor has only invaded ONE side of the rectum and not the other. Regardless, you can't have both internal/external sphincters removed on one side and expect to have any quality of life. That's just (in my opinion) not realistic. You need to have a REAL talk with your surgeon about your quality of life if he/she even says a resection is possible and having a colostomy. I know, the idea of a colostomy is NOT what you want to hear but you have to listen to those on this board who have one. THEY know what they are talking about. We had another member on this board who had a resection (honestly, I don't know how low her tumor was) and she really TRIED to make it work. She cut out dairy, then meat, eggs....you name it she tried it but nothing really worked. She was basically tied to her house. I remember her telling me that she got a small amount of relief if she did something like 30 minutes before a meal...a big glass of water, Metamucil...something like that BUT...that didn't allow her to eat out or be spontaneous with the timing of her meals. Belle got a colostomy and while it certainly wasn't her first choice...she loved it after a short adjustment period. She traveled (we went to Seattle together for the weekend and twice went to the mountains right before Christmas) , went swimming with her kiddos...in short she enjoyed life again.

IF the idea of a colostomy (assuming that's what they recommend) is something you just don't think you can deal with, then at least get two opinions....both from board certified colorectal surgeons.....and definitely NOT a general surgeon. I will post the link to check a surgeon's credentials (at the end of this post). IF the surgeon/onc recommend chemoradiation and IF you have a complete clinical response (there will be no way to tell about a complete PATHOLGICAL response...in other words microscopic cells may still remain in the sphincters) and IF the surgeon/onc are willing to go along with the 'wait and watch' protocol....that may be another option BUT....I caution you that there are a lot of IF'S in that last scenario.

Start verifying your surgeon but also, it is very important to wait for the results of the CT exam. IF (again, another big IF) there is spread, that may change what order treatments are done. You'll just have to wait for that report. If you've already had the CT and don't have a copy of the report....GET ONE! It is yours to request from the center that did the test and they can't say no. I might suggest that if you have a GP/PCP that you have a good relationship with him/her ask that all tests results are copied to him/her. That way you will be able to get the report much easier.

One last thing....now that you have a definitive diagnosis of cancer, you will be getting tests (blood, CT, ultrasound, etc.) for months/years to come. I would highly suggest that you go out and get a three ring binder and dividers and start by labeling the dividers with (example) PATHOLOGY, CT/MRI, BLOOD, etc. and keep a copy of each and every test result. Oftentimes a patient gets into the doctor's office and things become a blur and/or they forget an exact number or what the doctor says, etc. Having a hard copy of each result is a good way to go back and refresh your memory. In addition, many doctors just don't tell you every specific detail of your blood results, CT scans, etc. that are seen on a report and it doesn't mean that a doctor is hiding something. For example, had I not seen the kidney stone for myself on my first CT scan, I wouldn't have had any idea I had one AND I wouldn't have known that the pain I had when I passed it 10 years later was due to that kidney stone. Another example might be some arthritic changes in a spine, enlarged liver that is determined to be benign, etc. CT reports are full of a plethora of information and much of it just doesn't relate to the cancer (kidney stone, arthritis, etc.) so oncs/surgeons just don't think about relating that info to you. Nothing sinister in that, but it is information that YOU may want to know.

I know it's difficult to not just want this thing out and out NOW but you have to go through the tests and all of the steps. If the doctors recommend chemoradiation, you will have to see the radiation oncologist first, get mapped and then start treatments. I know that this is all a lot to absorb and there are all sorts of different pathways that this could go so you are just going to have to wait for all the results and take this one day at a time. Please try to relax .....do some thinking about all the possible scenarios and questions you will want to ask your doctors. Keep us informed.

http://www.abcrs.org/verify-a-physician-2/
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
Posts: 70
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Just Diagnosed

Postby Gloriamazz » Wed Jul 18, 2018 7:32 am

Hi Miss Molly,

You made me feel comfortable the way you presented the Colostomy. I won’t look at it as a big dragon spewing fire. I will vision the little flower.

My appointment is Thursday. I have the MRI and Ultra Sound report. Have not seen the cat scan.

The 1.9 Anal Verge has thrown a match in the fire.

I think I am still in shock. I can’t imagine what is yet to come. I have been through so much already.

The pain is unbearable but at least I have pain medicine if it gets too bad.

For a couple hours in the morning not too bad with the pain then progressively worse.
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

Gloriamazz
Posts: 70
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Just Diagnosed

Postby Gloriamazz » Wed Jul 18, 2018 7:47 am

Hi Lee
I can't imagine being sick and having to tend to children.
We do what we have to do. My husband has dementia and is a big child.

He does not understand I am sick. My daughters help me although they have jobs and family themselves.


I have not quite figured out posting and responding
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Just Diagnosed

Postby MissMolly » Wed Jul 18, 2018 1:11 pm

Gloria:
A good quality of life coexists with a colostomy.

The temporary loop ileostomies that those with rectal cancer deal with are challenging. Loop ileostomies are sited at a higher level of the small intestine than an end ileostomy, and are know for being “high maintenance.” Liquid fecal output, with a high volume and frequency can make pouching of the stoma and maintaining intact skin integrity seem like a full time endeavor.

An end colostomy (or Hartman’s pouch) is what you would like be offered as a surgical option if your anal sphincter’s are infiltrated by cancer cells. An end colostomy is, relatively speaking, “low maintenance.” The fecal output is soft and fairly formed. Fecal output is generally 1-3 times a day, often with the same bowel frequency pre-surgery. Single-use closed ended pouches keep mess and fuss to a minimum. After a bowel movement, remove the pouch, seal and place in a plastic bag and toss into the trash, and apply a new patch. Easy peezy.

Some colostomates practice daily irrigation. It is analogous to an enema of an intact intestinal system. Warm water is infused into the stoma, flushing the lower portion of the large intestine. Waste is collected into a collecting sleeve that attaches to an ostomy wafer adhered to the abdomen. Irrigation allows most colostomates to be output free for 24 hours. A simple stoma cap or mini-pouch is worn over the stoma in case of unexpected leakage. Irrigation is popular with colostomates. There is an entire forum on the UOAA dedicated to irrigation discussion and support.

Weisssoccermom provided personal insights of deciding to opt for an elective end colostomy by a beloved member of this forum, NWgirl (Bella). I came to know Bella as a friend, as she lived across the Columbia river from me in Battleground, Washington. Bella put her heart into writing about her experiences with a problematic ileostomy reversal and eventual decision to proceed with an end colostomy. Her hope was that her writings would help others facing an ostomy and to dispel the negative stereotypes of wearing an ostomy pouch/bag.

Belle’s writings are available for you to read, housed on the topic titled “Archived Blog Writings” on this forum’s main page.
Belle’s writing is a 3-part series, titled “Colostomy Colundrum.” Belle wrote this blog piece especially for individuals such as yourself. To help ease the fear and uncertainty of an ostomy.

Belle was an incredible person. My life was blessed knowing her.

Do not let the fear of an ostomy overwhelm you. The UOAA (United Ostomy Association of America) forum has a thoughtful and empathetic group of fellow ostomates who can support you with practical advice and tips. Everything you would ever need to know about living with an ostomy can be answered by members of the UOAA.

For the many health challenges that I have faced, the stoma and end ileostomy has been one of the easier hurdles to successfully cross. There is a good quality of life to be found with a stoma.

Sending you positive karma,
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.

NHMike
Posts: 2458
Joined: Fri Jul 21, 2017 3:43 am

Re: Just Diagnosed

Postby NHMike » Wed Jul 18, 2018 1:21 pm

A lot of the challenges that you read about here are on illeostomies. I have one right now and it is a bit of a headache and there are things that I can't do with it but I think that it's easier for chemo than not having it which is why it is there.
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

Eleda
Posts: 327
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Just Diagnosed

Postby Eleda » Wed Jul 18, 2018 1:40 pm

Hi Gloria,
While it is important to get Ur head around a permanent colostomy because of the situation of ur tumor, id just like to throw in a positive to cling to as my tumor was 2.5cm from anal verge and 3cm diameter
Shrunk 80% with radiation and am now 2 months post surgery, with complete colorectal anastomosis and temp illeostomy until reversal.
How it will work after reversal, " I don't know" but it is possible.
I had a 10.5 hour surgery with a TATME and because he couldn't do a j pouch because of position, he has done a coloplasty to help with "storage" afterwards!!!!
I had lymph node invasion so was necessary to remove the total mesorectal envelope .
Make sure u have an excellent colorectal surgeon that is qualified to do sphyncter saving surgery to give urself every possible chance....
It ain't over till the fat lady sings
So good luck with Ur appointment

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Gloriamazz
Posts: 70
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Just Diagnosed

Postby Gloriamazz » Wed Jul 18, 2018 6:24 pm

It just makes me crazy that I have told these doctors for the last year about my diarrhea and they tested for c-diff, parasites, said irritable bowel.

I had colonoscopy 3 yrs ago not one of those drs ever said let's do another colonoscopy. I am diabetic and thought it was my diet and dairy allergy.

I could not imagine a 10.5 hr surgery.

This is all recent for you Adele. Did you have any symptoms?
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

weisssoccermom
Posts: 5965
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Just Diagnosed

Postby weisssoccermom » Wed Jul 18, 2018 7:10 pm

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.
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

Eleda
Posts: 327
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Just Diagnosed

Postby Eleda » Wed Jul 18, 2018 7:46 pm

May 10th of this year Gloria
Me either,
I don't know how they keep their concentration,,,,
It flew for me because they never gave me the usual " now we're putting you out" so when I woke I thought they were only starting lol.
I had a bit of rectal intermittent bleeding in stool over summer ( thought nothing of it) until I had a bleed in between poos so then I panicked and went to my GP and had colonoscopy 2weeks later
"The shock of my life" there Infront of me on the screen!!!! CANCER!!!!!
But even stage 3 is curable so at least I had it in time so to speek,,,,,
My surgeon and oncologist always refer to me as being cured ( even though I never utter thoes sacred words myself)

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Capercrohnieileo
Posts: 25
Joined: Wed Apr 11, 2018 12:42 pm
Facebook Username: Jayne Olson
Location: NS, Canada

Re: Just Diagnosed

Postby Capercrohnieileo » Wed Jul 18, 2018 8:48 pm

I just want to add that I have a permanent ostomy (ileostomy) and it isn't that bad at all. Sure it has its moments but my quality of life is way better than before.
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.


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