Telephone appointment with my GI

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DarknessEmbraced
Posts: 3663
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Telephone appointment with my GI

Postby DarknessEmbraced » Wed Oct 20, 2021 1:49 pm

My telephone appointment with my GI was pleasant. He was friendly. He said that the biopsy didn’t show the characteristics of ulcerative colitis. That it showed areas of scarring which is consistent with my past IC attacks. That all I can do is to try to prevent an attack by staying hydrated, not constipated, making sure my blood pressure isn’t too low and avoiding certain medications which constrict blood vessels such as NSAIDs. My IC attacks happen in the splenic flexure area which have the smallest blood vessels in the body. Also redundant colon doesn’t mean that I have extra colon. It means that my colon is more floppy making it a challenge for him to navigate. Also maybe it flops over and constricts the blood vessels in that area? He said that I need to focus on what I can control each day instead of worrying about what could happen in the future. He said it’s ok that I don’t have much of an appetite especially at lunch. That I shouldn’t force myself to eat a lot. The appointment went better than I had hoped. I didn’t mention about the 8th because bringing it up wouldn’t have been worthwhile.
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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O Stoma Mia
Posts: 1691
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Telephone appointment with my GI

Postby O Stoma Mia » Wed Oct 20, 2021 2:34 pm

I have a suggestion. Why don't you apply for a full-time job in Fredericton, so that you can have a better standard of living, more flexibility, and can then afford a wider range of health care options?

Since you have good writing skills, computer skills, and experience with several social media platforms, maybe a job like the one below would appeal to you. What do you think?

Interesting job in Fredericton, NB

DarknessEmbraced
Posts: 3663
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Telephone appointment with my GI

Postby DarknessEmbraced » Wed Oct 20, 2021 3:01 pm

Thank you but we have excellent insurance through my boyfriend's job which covers prescriptions, dental and vision. Medicare covers the rest. We do well with my boyfriend's job. Our standard of living is good. The lack of doctors and nurses is what makes our healthcare system the way it is. Having more money wouldn't make a difference because there still wouldn't be enough doctors to go around.The system needs a complete overhaul. In the UK they have the option of going privately for better care but in Canada we only have the national healthcare system. I appreciate the suggestion though.
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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CRguy
Posts: 10346
Joined: Sun Feb 10, 2008 6:00 pm

Re: Telephone appointment with my GI

Postby CRguy » Wed Oct 20, 2021 8:36 pm

DarknessEmbraced wrote: Also redundant colon doesn’t mean that I have extra colon. It means that my colon is more floppy making it a challenge for him to navigate. Also maybe it flops over and constricts the blood vessels in that area?

There is a difference between volvulus and torsion in relation to the "twisting" which could cause IC.
Some of these are life threatening issues and PAINFUL ... BUTT ... sometimes things are "milder" and transient so no 911 call but the damage is still done.
Only a motility study would likely be able to illucidate whether or not this is your issue ????
It IS worth following up with your Docs and KEEP Pushing until you get an answer and a solution !!!!

That I shouldn’t force myself to eat a lot.
Knowing what your GIT can handle, when, what and how much ... I believe IS key to understanding many post-surgical CRC patients issues.


Cheers and best wishes DE
CRguy on the Journey with you
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

DarknessEmbraced
Posts: 3663
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Telephone appointment with my GI

Postby DarknessEmbraced » Thu Oct 21, 2021 5:34 am

CRguy,

You're right that there is an issue. My GI just said that my colon is floppy. That it bends more than it should. I've had a gastric emptying test which was normal. Is that what you mean by a motility study? My GI made it sound like my surgery is one of the causes of my IC attacks. The veins being the smallest in the body( watershed area) is also a cause. I had half of my sigmoid and half of my rectum removed so my colon is shorter. It seems like all I can do is try to prevent IC attacks. Sometimes nothing helps and I have an IC attack. I have scarring from prior IC attacks in that area. You're right that knowing what my digestive system can handle is important. Sometimes it seems like my digestive system can't handle much at all. Thank you so much CRguy! i appreciate all of your advice and support. :)
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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O Stoma Mia
Posts: 1691
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Telephone appointment with my GI

Postby O Stoma Mia » Thu Oct 21, 2021 1:38 pm

It's good that you had a pleasant phone call with the gastroenterologist.

Did you manage to get all of your questions answered satisfactorily?

Do you have enough information now to allow you to avoid ischemic crises in the future?

DarknessEmbraced
Posts: 3663
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Telephone appointment with my GI

Postby DarknessEmbraced » Fri Oct 22, 2021 5:50 am

I'm glad too. I know there are things I can do to try to avoid an ischemic colitis attack. Sometimes though, I'll still have an ischemic colitis attack. Each attack is different. Sometimes I'll have some of the same symptoms that I get with an ischemic colitis attack but the symptoms won't progress to bleeding or severe diarrhea. I can't predict when an ischemic colitis attack while happen nor stop it once it's started. Only dilaudid(morphine gives me chest pain) will help with the severe pain. I appreciate all of your advice and support O Stoma Mia. I wonder if there are other members who have dealt with ischemic colitis after a colon resection?
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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O Stoma Mia
Posts: 1691
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Telephone appointment with my GI

Postby O Stoma Mia » Fri Oct 22, 2021 12:09 pm

Question: When you were talking to the gastroenterologist, did he ask you whether you slept on your right side or on your left side? If you sleep on your left side, the heart will have an easier time pumping blood into the left ischemic colon.

DarknessEmbraced
Posts: 3663
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Telephone appointment with my GI

Postby DarknessEmbraced » Sat Oct 23, 2021 7:16 am

No, we didn't talk about how I sleep at all. After my surgery in 2014, I put pillows on either side of me to force me to sleep on my back. I still fall asleep on my back but sometimes wake up on my side. Thankfully, I haven't had the blood supply to that area of my colon cut off for long periods of time. I do wonder if my redundant colon, episodes of constipation and my colon resection are the only factors which put me at such a risk for ischemic colitis attacks? Not everyone who has a colon resection will end up having ischemic colitis attacks.
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! :)

Caat55
Posts: 692
Joined: Sat Dec 23, 2017 6:01 pm

Re: Telephone appointment with my GI

Postby Caat55 » Thu Oct 28, 2021 10:55 am

HI DE,
I am sorry to hear about your issues, strange isn’t it that far out from treatment and no issues arise. I am having similar new issues with diarrhea that comes sometimes within half and hour of a meal. I haven’t been able to connect it to any food in particular but the fixes that worked after my reversal don’t anymore.
Have you found any dietary, life style changes that make a difference?
S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

DarknessEmbraced
Posts: 3663
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Telephone appointment with my GI

Postby DarknessEmbraced » Sat Oct 30, 2021 6:21 am

Caat 51, I'm sorry you're having diarrhea. *hugs* Maybe the BRAT(bananas, rice, applesauce, toast) diet would help you. I haven't really found anything which helps my daily cramping except buscopan. I haven't found anything which stops ischemic colitis attacks. I have been dealing with them since 2015. Diet doesn't really make a difference when it comes to ischemic colitis attack. Certain foods can make the symptoms worse once an attack was started.
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! :)

Caat55
Posts: 692
Joined: Sat Dec 23, 2017 6:01 pm

Re: Telephone appointment with my GI

Postby Caat55 » Sat Oct 30, 2021 8:07 pm

Wow, that is really too sad. After everything we have achieved, wished there was something that worked for you.
Take care,
Susan
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

DarknessEmbraced
Posts: 3663
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Telephone appointment with my GI

Postby DarknessEmbraced » Sat Nov 06, 2021 8:02 am

Thank you Susan. i wish there was something which would completely prevent ischemic colitis attacks too. I haven't had an ischemic colitis attack since that time in July. Each attack is different so I never know if I will end up in the hospital or can stay home. I hope you're feeling better. *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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