I was in the hospital

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DarknessEmbraced
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Location: New Brunswick, Canada

I was in the hospital

Postby DarknessEmbraced » Thu Jul 22, 2021 6:51 am

Last Tuesday, I had a really awful time. I was in the bathroom for 3 hours with severe diarrhea. I was in so much pain that I was on the bathroom floor in the fetal position and I was sweating. I vomited and got the chills. I then had a lot of rectal bleeding. There were blood clots in the bleeding had. I went to the ER. I was so dehydrated that my urine was brown, They immediately put me on lots of fluids. I was in the hospital from July 14th to July 22nd. I had an abdominal CT scan with gastrografin, an abdominal series of X-rays and a colonoscopy. I had an awful time drinking 4 liters of Peglyte. My doctor said that it looked like ischemic colitis. He took biopsies. I have to wait one to two weeks for the biopsy results. My doctor said I could try not get constipated. I'm going to try restolrax which is like miralax. I will try vert small amounts at first. I can try to eat six small meals a day instead of three. Also that I should have avoid dehydration because it can lead to an ischemic colitis. I hope that my GI can tell me what else besides my surgery can lead to ischemic colitis attacks. I only saw my GI for a few minutes in my hospital room. I didn't see him after the colonoscopy.
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! :)

Punky44
Posts: 484
Joined: Mon Oct 01, 2018 4:29 pm

Re: I was in the hospital

Postby Punky44 » Fri Jul 23, 2021 12:51 am

So sorry you are going through this and were in the hospital! Thinking of you and hoping you get some answers and relief.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1
Latest update: 6/28/21: Clear CT with CEA 3.1 (attributed to emphysema)

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

TiredandTroubled
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Joined: Sat Jul 10, 2021 7:11 am

Re: I was in the hospital

Postby TiredandTroubled » Fri Jul 23, 2021 5:51 am

So sorry you’re going through this. Any idea what causes the colitis?
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

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

Re: I was in the hospital

Postby DarknessEmbraced » Fri Jul 23, 2021 9:26 am

Thank you both. I was hospitalized in 2015 for ischemic colitis. That was my first attack. I've had other attacks since but none with bleeding until last week. I have been on a daily low dose aspirin since 2018. My GI believes the change in blood flow from my surgery causes my ischemic colitis attacks. Beyond that I'm unsure what leads to my attacks. My Internist's office called and booked a telephone appointment with my Internist for August 4th. My nuclear stress test results must be back. I hope it's good news.
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: 6205
Joined: Sun Apr 16, 2006 4:09 pm

Re: I was in the hospital

Postby Lee » Fri Jul 23, 2021 7:49 pm

DE, you continue to be in my thoughts & prayers. So sorry for all you have been through.

(((DE)))

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: 3607
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Location: New Brunswick, Canada

Re: I was in the hospital

Postby DarknessEmbraced » Sat Jul 24, 2021 7:57 am

Thank you Lee! :) i wish that I knew when this feeling of being depleted would go away as well as my stomach cramping and having a bruised feeling on the inside. All I can do is to take it day by day. I think that it's going to take a while for me to feel better. My body is still healing from this ischemic colitis or ulcerative colitis attack.
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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WriterGirl1969
Posts: 517
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: I was in the hospital

Postby WriterGirl1969 » Sun Jul 25, 2021 4:33 pm

Ugh - so sorry to hear you had to go through that! Sounds awful. Praying you feel better soon.
Hugs!
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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

Re: I was in the hospital

Postby DarknessEmbraced » Mon Jul 26, 2021 8:39 am

Thank you WriterGirl1969. I'm having a bad day with cramping and pain today. I wish the biopsies were back already. I will feel better once it's confirmed that it's ischemic colitis and not ulcerative colitis or my cancer has returned. Waiting is hard!
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: 10317
Joined: Sun Feb 10, 2008 6:00 pm

Re: I was in the hospital

Postby CRguy » Tue Jul 27, 2021 1:58 pm

Sending best wishes and prayers that you are feeling better and getting answers soon !

Peace Love and Harmony coming atcha' from the left coast
CRguy
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: 3607
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I was in the hospital

Postby DarknessEmbraced » Wed Jul 28, 2021 6:36 am

Thank you CRguy! My stomach is still bothering me. I had my second Pfizer shot yesterday so I'm feeling the effects of that as well.
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! :)

boxhill
Posts: 730
Joined: Fri Apr 06, 2018 11:40 am

Re: I was in the hospital

Postby boxhill » Wed Jul 28, 2021 1:58 pm

You poor thing, that sounds like quite an ordeal! Very glad to hear that you are fully vaccinated, although the timing could have been better, I'm sure.

It sounds like it helps to eat low residue foods, avoid anything that dehydrates or constricts blood vessels, and take a lot of fluids. But I'm sure you know that already. Have you checked over the supplements you take to make sure none of them are a potential problem? You've probably done that already too. Hugs and best of luck to you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

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beach sunrise
Posts: 500
Joined: Thu Mar 05, 2020 7:14 pm

Re: I was in the hospital

Postby beach sunrise » Wed Jul 28, 2021 10:49 pm

My goodness, what a time you've had! Makes me wish I could come up there, wrap you in blankets, make chicken soup and all that good stuff.
I hope you get back to feeling better soon. I'm thinking about you.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

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Jacques
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Location: Occitanie

Re: I was in the hospital

Postby Jacques » Wed Jul 28, 2021 11:29 pm

boxhill wrote:... Have you checked over the supplements you take to make sure none of them are a potential problem? ...

This is very important. Since you now have about half a dozen different ongoing comorbidities, you have a truck-load of medications to deal with, and you need to be concerned about coordinating the recommendations coming from the half-a-dozen or so different specialist doctors that you have been seeing. You need to make sure that somebody is coordinating this very diverse treatment regimen. Who is doing that?

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

Re: I was in the hospital

Postby DarknessEmbraced » Thu Jul 29, 2021 9:05 am

boxhill,

Thank you. I only take vitamin D twice a week and one chewable vitamin C a day when I remember. I'm not very big on supplements. Low residue does seem to help a little but I still do eat some fiber. Restoralax is helping a little bit. I feel best when I don't eat but I can't do that because I'm already losing too much weight. If my stomach is really bad and bsucopan hasn't helped; I do drink only a smoothie for lunch. It's a whole blender full though not just a small amount.

beach sunrise,

Thank you. You're very sweet.


Jacques,

I have a family doctor for gets copies of everything and is usually the one who makes referrals. She leaves a lot to the specialists. As far as I know none of my medications cause any issues. My Gi put me on the daily low dose coated aspirin to try to prevent ischemic colitis attacks.


I confess, that I'm very impatient for my GI's office to call or email me with an telephone appointment date and time. Two weeks is a long time to wait for biopsy results.
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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Jacques
Posts: 600
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: I was in the hospital

Postby Jacques » Thu Jul 29, 2021 1:31 pm

DarknessEmbraced wrote:... As far as I know none of my medications cause any issues....

DarknessEmbraced wrote:... I'm still having cramping, pain, bad bloating, gas especially during my period. I'm trying to get a hold of the gynecologist to find out if my pelvic scans showed fibroids, endoemetriosis or anything else that would make my periods more painful...

One of the things that could cause this type of pain is levonorgestrel, the active ingredient in your Mirena. Is your gynecologist aware of this? Is levonorgestrel on the comprehensive list of your medications that you give to each of your doctors?

"Mirena - Side effects requiring immediate medical attention
Along with its needed effects, levonorgestrel (the active ingredient contained in Mirena) may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur while taking levonorgestrel:
  • Heavy or light menstrual bleeding
  • Absent missed or irregular menstrual periods
  • Cramps
  • Irregular menstruation
  • Pain
  • Pain in the pelvis
  • Stopping of menstrual bleeding

Mirena - Gastrointestinal Side Effects
  • Very common (10% or more): Nausea (up to 23.1%), abdominal/pelvic pain (up to 22.6%)
  • Common (1% to 10%): Diarrhea, vomiting
  • Uncommon (0.1% to 1%): Abdominal distension
  • Frequency not reported: Bloating, abdominal cramps
Ref: https://www.drugs.com/sfx/mirena-side-effects.html

Maybe you could discuss this with your gynecologist and see if a substitute for your Mirena could be found -- something that does not have levonorgestrel as an active ingredient.


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