GI appointment

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DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

GI appointment

Postby DarknessEmbraced » Thu Dec 22, 2016 3:07 pm

My GI said to try a probiotic. I asked if he knew about LAR syndrome. He said there were theories about what caused it but not much to treat it. He gave me a sample of Align. Probiotics are too expensive though so I will stick with probiotic yogurt. He gave me buscopan for really bad cramping that isn't helped by anything else. It's to take as needed. Dicetel(pinaverium bromide) doesn't get rid of all of my cramping and spasms but I feel much worse without it. He said there's nothing I can do to prevent diarrhea accidents while sleeping. He said amitriptyline can be stopped at any time. I told him that didn't matter because I didn't want to take it. I asked if there's anything I can do to prevent another attack of ischemic colitis: He said stay hydrated, no smoking(I don't smoke), no drinking(I don't drink), make sure blood pressure isn't too low(I am on bp meds that keep my bp normal), and not to take NSAIDS like advil, aleve, ibuprofen(I don't take them because they make my high bp worse). He said ischemic colitis was caused by my colon resection so it doesn't sound like there's much more besides staying hydrated that I can do to prevent it. I see him in February.
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! :)

Lee
Posts: 6202
Joined: Sun Apr 16, 2006 4:09 pm

Re: GI appointment

Postby Lee » Fri Dec 23, 2016 6:35 pm

DE

I'm so sorry your Dr visit did not go better. There's got to be a solution out there. I don't understand how the surgery gave you ischemic colitis. Any chance you can get a new Dr?

(((DE))) Thinking of you,

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!

DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: GI appointment

Postby DarknessEmbraced » Sat Dec 24, 2016 11:50 am

My colon resection surgery is supposed to make me more prone to getting ischemic colitis again. My GI said it changes blood flow. If it's due to surgery then why doesn't everyone who gets surgery get ischemic colitis? Unfortunately there are only two GIs here. The other one works in the same office with my GI. Referrals take too long. It's easier just to stick with my GI unfortunately. Thanks Lee.
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! :)

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: GI appointment

Postby KElizabeth » Sat Dec 24, 2016 2:05 pm

For me what works is gas-ex before bed to break up the gas so it does not come out in bursts and Nulev to calm the soft tissue of my colon. The nulev helps keep from being active while I sleep. Still sometimes I myself running to the can with barely enough time to drop trow . I name the catastrophic bathroom events after different war tactics our bombings to amuse myself.
Last night was the merry Christmas blitzkrieg.

Hang in there.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: GI appointment

Postby DarknessEmbraced » Sat Dec 24, 2016 2:23 pm

Thanks for the suggestions KElizabeth. I'm sorry you deal with it too.*hugs* I hope you feel better soon!*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
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: GI appointment

Postby BeansMama » Thu Dec 29, 2016 9:23 pm

So sorry your GI wasn't much help DE. I wish there was an easy answer for you. Hopefully more people that have dealt with this will chime in. ((Hugs))

Beans.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: GI appointment

Postby DarknessEmbraced » Fri Dec 30, 2016 5:31 pm

Thanks BeansMama!*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! :)

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

Re: GI appointment

Postby MissMolly » Sat Dec 31, 2016 12:55 pm

DarknessEmbraced:
You mention that you are constrained by costs, but know that a quality probiotic need not be exorbitantly expensive.

I have been as pleased as punch with the line of probioitics offer by a company "Probiotic America." These are premium supplements with helpful and friendly customer service.

www.probioticamerica.com

Or call: 1-866-803-9895
Hours: 6 am to 4 pm PST

I have used both the "Perfect Biotics" and "Perfect Flora." I can speak highly of the Probiotic America products.
- 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.

DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: GI appointment

Postby DarknessEmbraced » Sat Dec 31, 2016 1:48 pm

Thanks MissMolly but I live in Canada. Duty, taxes and shipping make anything coming from the US more expensive. I appreciate the suggestion.
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
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: GI appointment

Postby Maia » Sat Dec 31, 2016 2:23 pm

http://www.aeprobio.com/

"WHICH PROBIOTICS SHOULD BE RECOMMENDED?

There is an abundance of products that contain probiotics. The Clinical Guide to Probiotic Supplements available in Canada http://www.probioticchart.ca/ and The Clinical Guide to Probiotic Products available in the US are available to help health care professionals find their way.

The guides present the products containing probiotics offered in Canada and in the United States. All the products with health benefits are listed, presented according to the criteria and levels of clinical evidence established by independent experts. It also makes it possible for healthcare professionals to recommend to their patients the products that are suitable given the targeted indications.

The products are organized by categories that facilitate and accelerate research, either by the name of the product, indications, sex and age (children and adults). In addition, it also includes functional supplements and foods.

Hard copy versions of the guides are distributed at some conferences.

Electronic versions are also available online at ProbioticGuide.ca and USProbioticGuide.com

The PROBIOTIC GUIDE mobile app may be downloaded free of charge."



The mission of the Alliance is to provide credible and rigorous scientific tools to healthcare professionals and consumers in order to improve their understanding of probiotics and to increase clinical applications.

DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: GI appointment

Postby DarknessEmbraced » Sat Dec 31, 2016 2:29 pm

Thank you Maia. :)
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
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: GI appointment

Postby Maia » Sat Dec 31, 2016 2:41 pm

You're welcome!
My friend, for whom I came to this board in 2012, was Canadian. So I know some Canadian tricks :)
Hope it helps you!! xoxo

drw
Posts: 51
Joined: Sun Mar 30, 2014 4:43 am

Re: GI appointment

Postby drw » Tue Jan 03, 2017 11:32 am

DE, I haven't been on here in awhile so I'm not up to date, but you mentioned LAR syndrome and that caught my attention. I thought I had LAR syndrome and tried everything besides pain pills which was the main solution all the doctors suggested. I was told my pain was because of radiation damage and there wasn't anything that they could do to ease the pain. I knew I wasn't alone in my misery because of this board, but my doctors all acted like they never heard of my symptoms. ...it was very depressing. I had decided that I would keep experimenting and keep asking for 6 months and then I was going back to a bag. I wasn't living the rest of my life like that. In June of last year, I went gluten free....pain gone. I don't know what happened or why I was intolerant after surgery and treatment but if I even get a little exposure, I'm reminded of what life was like before June. It's worth a shot. I still have bathroom issues but I can live with that. I hope you find a solution soon, that's a terrible way of life. Good luck :)
4/14 dx rectal cancer at 45 yoa
4/14 transanal excision
6/14 lar - 2 positive lymph nodes stage 3
8/14 started radiation and xeloda
1/15 completed chemo
2/15 Ned :)
3/15 reversal

DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: GI appointment

Postby DarknessEmbraced » Tue Jan 03, 2017 11:43 am

I'm glad going gluten free helped you drw.*hugs* I tried going gluten free for a week and it did nothing to help my symptoms. In fact I felt worse. I wish it would have helped. Thanks for the suggestion.
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! :)

drw
Posts: 51
Joined: Sun Mar 30, 2014 4:43 am

Re: GI appointment

Postby drw » Tue Jan 03, 2017 2:31 pm

I'm sorry it didn't help you. Most people don't see a change for a month or so, it can take awhile to get the gluten out of your system. I hope you find a solution soon. ♡
4/14 dx rectal cancer at 45 yoa
4/14 transanal excision
6/14 lar - 2 positive lymph nodes stage 3
8/14 started radiation and xeloda
1/15 completed chemo
2/15 Ned :)
3/15 reversal


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