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songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3698
   Posted 3/5/2018 8:38 PM (GMT -6)   
Hi all - I am just popping in to say hi.
My loop ileo is quite tame at this point, a little over 2 months out from surgery. Once the swelling in the area started to go down, and the skin and tissue underneath began to heal, the stoma has protruded a bit more rather than being flush. And I've learned more about what products work for me!

My j pouch is in place and ready to go (ha, ha..."ready to go...") I expel mucus from it some, which my surgeon said was a sign that it is healthy. At first there was blood in that mucus, but then it stopped. (I assume, from the timing, that the blood was residual from the surgery.)

I am 1/4 done with chemo! The first dose was really rough on me, fevers, never-ending queasiness, D...so they adjusted the dose a bit and last time it was much milder. I am hoping today's dose is similar to the last!

Again, the oncologist talked about this being a preventative chemo (he used a fancy word.) We'll only know it has worked by the continuing absence of cancer in the future!

Also, I've been working some from home, but I actually went in this last weekend. It was such a boost! yeah I hope to go in at least every other week for now (not knowing how I will feel on chemo weeks.) Otherwise, I am semi-hibernating because of the flu and other germs around....
Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17

Post Edited (songlady) : 3/5/2018 7:37:47 PM (GMT-7)


momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 2026
   Posted 3/5/2018 8:46 PM (GMT -6)   
Glad you are doing well! Sorry the chemo made you sick. Good idea to lay low as much as possible, but sometimes you just have to be "normal" for while and get out! Hope everyhting continues to heal and the rest of chemo is less difficult.
42 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa every other night- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 3/5/2018 10:55 PM (GMT -6)   
Hey there! I am happy you're feeling positive and making the best of everything. I love that he called it preventative (or whatever the fancy word is), that's a huge relief. I remember you said you're going to wait until you're done with the chemo to reconnect, when do you anticipate having step 2? I always love seeing your updates.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

geezernow
Regular Member


Date Joined Nov 2017
Total Posts : 70
   Posted 3/6/2018 5:59 AM (GMT -6)   
It's so good 'hearing' that you are feeling better now. All I can say is, bless you and I hope you continue on the 'feeling great' path.

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 2174
   Posted 3/6/2018 8:12 AM (GMT -6)   
Good to hear from you!!
MODERATOR-UC FORUM
59, female - diagnosed with moderately severe proctitis/mild diverticulosis
Lialda - one a day
6mp - 50 miligrams
VSL#3 DS - 1 pack a day or as needed
Zocor - 40 mg
Calcium with Vitamin D
Glucosamine
Magnesium
B-Complex

"Fly under the radar" - Dad -

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13246
   Posted 3/6/2018 8:47 AM (GMT -6)   
Thanks for checking in and I'm glad you're doing well. Chemo can be tough for sure!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

UC experience: wakeup with noisy bowels so no lingering in bed, soon after poop with discomfort/pain/mild-nausea, eat something, poop, get dressed, poop, leave in car and worry whole drive about more...

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 1033
   Posted 3/6/2018 10:11 AM (GMT -6)   
Your a winner.Keep up the good work

quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 3/6/2018 12:52 PM (GMT -6)   
Hi songlady! Awesome to hear things are going well for you at this point.
Hope the rest of your chemo is tolerable and that all is clear from now on.

Hugs,
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Post Edited (quincy) : 3/6/2018 10:55:20 AM (GMT-7)


Spring
Regular Member


Date Joined Jan 2017
Total Posts : 396
   Posted 3/6/2018 6:58 PM (GMT -6)   
Glad to hear you are doing well!
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Down to 20 mg Pred. Veg, gf, no cows milk, multi, cal-mag, Aroga, Purrium

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 2152
   Posted 3/6/2018 7:59 PM (GMT -6)   
Glad that you are doing okay..well done!
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 3/8/2018 2:39 PM (GMT -6)   
Hurray for being 1/4 done with chemo! Thanks for updating us. Keeping you in my thoughts so always glad to see your latest posts. / Old Hat (37 yrs with left-sided UC; presently in remission taking brandname Colazal)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 3/15/2018 8:06 PM (GMT -6)   
Thinking about you songlady. How are you?
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

marcell
Regular Member


Date Joined Mar 2018
Total Posts : 128
   Posted 3/15/2018 10:09 PM (GMT -6)   
So they found a cancer during the surgery? Couldn't they find it before, during the colonoscopy?

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 3/15/2018 11:58 PM (GMT -6)   
marcell said...
So they found a cancer during the surgery? Couldn't they find it before, during the colonoscopy?


I don't remember all the details, but they did find it during a scope, & they said it was okay to monitor instead of doing colectomy. She monitored for a while, and I guess over time, it became more questionable, and started to lean toward cancer, so she had surgery. The pathology after surgery showed cancer. I think it was a Goblet cell carcinoid or a sessile serrated polyp originally. Something along those lines. You would know if you had this in your colonoscopy report.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

PamSmith
Regular Member


Date Joined May 2010
Total Posts : 238
   Posted 3/16/2018 8:58 AM (GMT -6)   
If it was polyp, they must have removed it during colonoscopy. right? Hope you are doing well songlady.
Current medication: 6mp 75mg/day, Lialda 2x2
Current supplements: multivitamin, VSL #3,Citracal, Vitamin D,Biotin
Diagnosed :crohn's colitis 2010 now changed diagnosis to Indeterminate Colitis(prometheus serology sgi test)

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3698
   Posted 3/16/2018 9:19 AM (GMT -6)   
Hi -
NSSG is right; both of those had been found in colonoscopies over the last 1 1/2 years or so. (I am sure if you searched those terms on this site, my posts about them would turn up.) I was having colonoscopies every 6 months for the last few years, because my GI was concerned that, as a result of damage from inflammation over the decades, my colon was shooting off abnormal cells here and there with increasing frequency. (When I was first diagnosed, the whole study of inflammation and its effects was not advanced.)

After the Goblet Cell finding, I was referred to an oncologist who did blood tests and a 24 hour urine collection test to check for a certain hormone which would indicate that this cancer was in another organ or systemic. (5 HIAA test) That test was clear.

6 months later, when I was scoped, there was a dramatic stricture right at the area where I had had a lot of inflammation over the years. The GI sent me to the surgeon. The docs both hoped the stricture was simply a result of inflammation, but we scheduled surgery. (By now I was ready to get rid of the colon!)

The particular adenocarcinoma that was found actually develops in the submucosa, which is why it had not been found on colonoscopy. It was related to the Goblet, but not classified as such when they took out the colon and lymph nodes and did overall pathology.

The cancer went through the submucosa and colon wall and into 6 of the 44 lymph nodes they removed.

With people who've had this cancer and had it in 4 or less lymph nodes, 3 months of chemo has proved effective. For those with cancer in more than 4 lymph nodes, 6 months is more effective. So we are doing the 6 months, but the oncologist said that if my blood levels go screwy after Session 10, we might call it quits and he would think we had done enough.

The cancer was all removed during surgery, and according to CT scan I am clear, but the chemo is to take care of any undetectable, developing cancer cells. Dr. had me sign a document that my understanding is, this treatment is for a full cure. Yay!!

I LOVE my surgeon. When he got in there and saw how things looked, he removed more than we'd thought he might. Thank goodness! He basically saved my life. Because I have always been overweight, I find this quite agreeable, but - he removed 15 pounds of me in that surgery! That's a lot of tissue!

I hope that helps answer some questions.

NSSG, I am doing well! Back to work part time, feeling good except for the 4 days around chemo. smile
Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 3/16/2018 9:57 AM (GMT -6)   
I am so happy you're doing well. Wow, 15 pounds, I wish they did some fun stuff during my surgery. smile I've been much more petite since surgery regardless. I think the prednisone had my body all screwed up. Are you halfway through the chemo? 6 months seems like a long time, but in the bigger picture, it's a short time to ensure your future health. I am still shocked that all this happened to you.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3698
   Posted 3/16/2018 3:37 PM (GMT -6)   
hi nssg -
And with chemo, I've lost a grand total of 30! For me, this is wonderful. I haven't weighed this number since I started on Pred in 1986! lol

I am 1/4 through the chemo. 3 sessions down. In 3 days I'll have another and then I'll be 1/3 done. Yes, it sure seems like forever right now! I am trying to keep the long view: 5 years from now I'll be so glad I did this! smile
Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17

hateuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2354
   Posted 3/17/2018 6:45 PM (GMT -6)   
So glad to hear a good update!!!! Great to hear from you Songlady!
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