extensive low grade dysplasia

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Coral
Regular Member


Date Joined Oct 2015
Total Posts : 66
   Posted 6/14/2018 8:11 PM (GMT -6)   
Hi all, I had a colonoscopy in May 2017, all was fine. I had another one this May 9th I waited at least 2 weeks did not hear any reqults so I called and they sent it out to another lab I thought no news over a month later I should be fine right well my Dr. called me today he just got the results he took 29 samples from rectum all through my colon (i've had pancolitus for about 20 years) This is the results

(A-E) Colon, right, transverse, descending, right and rectum, biopsy:
- Extensive low-grade dysplasia at all sites.
- One patch of active chronic colitis and ascending colon

He said he talked with 2 other GI's and all three recommend having my colon removed. What are your thoughts. And would a fine colonoscopy 1 year eariler be be to my whole colon be affected now what does that mean is this agressive. Can I wait to do surgery until November, I'm not back home unitl late August to meet with my Dr and a surgeon.

Thanks for any help I'm freaking out a little todat.

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 1060
   Posted 6/14/2018 8:23 PM (GMT -6)   
You need to get your colon out ASAP. You can't risk it turning into cancer.

Post Edited (C_G_K) : 6/14/2018 7:38:36 PM (GMT-6)


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4386
   Posted 6/14/2018 8:57 PM (GMT -6)   
I wouldnt wait. Im sorry you got this news.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.

Christine1946
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Date Joined Aug 2008
Total Posts : 5968
   Posted 6/14/2018 9:07 PM (GMT -6)   
Ditto.....I had UP (ulcerative proctitis) for twelve years. It never traveled further into my colon, but with UC, they stress to remove all of it if removing the rectum. All my colon had wrong with it was mild diverticulosis. However, my rectum was a mess. I have a permanent ilieostomy. My surgeon suggested I not go with the j pouch, too many complications...at least in my case. I had my surgery in June of 2010. Dysplasia is serious and yes, you could have had a normal colonoscopy last year and dysplasia this year. Thank God you had a colonoscopy before it turning into cancer. Yes, have that colon out, it will save your life.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16427
   Posted 6/14/2018 9:14 PM (GMT -6)   
I had surgery and I have a jpouch now. I didn't do it for Cancer, i did it because of severe and unresponsive UC, but I can tell you, life is good without a colon. No more UC worries, no more drugs, no more cancer worries. If it's necessary, especially in the case of cancer, I would take the appropriate steps to ensure you live a long, healthy life. Low grade sounds like there's a lot of hope, but I would move quick personally. No reason to hang on to something that can potentially make you very sick, or even end you life. I would do it before november personally. I wouldn't rush of course, you do need to find a skilled surgeon you feel comfortable with, but i would start that process literally tomorrow. Cancer can move fast, and this sounds like this particular case is/has. Of course a second opinion from another GI is always a good idea. Did you see the report yourself?
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

quincy
Elite Member


Date Joined May 2003
Total Posts : 30681
   Posted 6/14/2018 10:13 PM (GMT -6)   
Oh...never what we expect to hear. I would have it out asap. Dysplasia is already changing towards cancer. Dysplasia in a large area says not to wait, especially if it's happened within one year.

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/Oxeze/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 50 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 !!

Coral
Regular Member


Date Joined Oct 2015
Total Posts : 66
   Posted 6/14/2018 10:21 PM (GMT -6)   
Thank you all for your responses.
I did see the report and it said all 29 samples have low grade dysplasa. The reason I want to wait til November is I have a cruise booked with my husband and I really feel this is needed before I do anything. My dr is in NY and I wont be back to NY till August my Dr said I can wait until then to talk with the surgeon, I am concerned and worried but I really would like to have a great vacation with my husband before I get into major surgery. How long does it take and does recovery take.
UC about 20 years also have Raynaud's phenomeenon andd many allergies
Lialda 4, 1.2 g daily
(Prior Asacol HD 800 mg 3x day)
Casana
Probioptic
Allergic to Wheat, Dairy, Tree fruits, Tree nuts, Honey, Onions
Potassium 20 meq 3x a day
Zyrtec, Singular daily
Azelastine nose spray 2x a day
Multi vitamin daily

Post Edited (Coral) : 6/14/2018 9:30:39 PM (GMT-6)


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1739
   Posted 6/14/2018 10:53 PM (GMT -6)   
I could be wrong about this, but my understanding is that low grade dysplasia does not necessitate removal of the colon. High grade dysplasia does. When it's extensive low grade dysplasia, I think it's more a grey area, so to speak.

Did your GI have multiple pathologists review the biopsies? I would suggest that strongly, if it wasn't already done. If they agree it's all low grade, you have more time to decide whether or not to have surgery. If a second opinion finds it to be high grade, you'll need surgery without much debate.

Even if it's high grade dysplasia and you need surgery, it's probably safe to have the surgery later in the year. Progression from dysplasia to colon cancer to metastisized colon cancer probably wouldn't happen in just a few months. Then again, I just said 'probably' twice, so...who knows?

Coral
Regular Member


Date Joined Oct 2015
Total Posts : 66
   Posted 6/15/2018 12:39 AM (GMT -6)   
There were two pathologists that stated all was low grade dysplasia, what concerns me the most is just one year proir no area was dysplasia to the entire colon having it. I still think I can wait til November for the surgery he did consult with tso other gi's that recommend surgery I am going to try to reach my gi from last year she moved or I wouldn't of changed gi's and see what she says also.
UC about 20 years also have Raynaud's phenomeenon andd many allergies
Lialda 4, 1.2 g daily
(Prior Asacol HD 800 mg 3x day)
Casana
Probioptic
Allergic to Wheat, Dairy, Tree fruits, Tree nuts, Honey, Onions
Potassium 20 meq 3x a day
Zyrtec, Singular daily
Azelastine nose spray 2x a day
Multi vitamin daily

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12750
   Posted 6/15/2018 7:49 AM (GMT -6)   
Sorry to hear. The whims, fits, and surprises of UC are really hard to wrap your head around at times. Understanding it is not always possible.

I'd start researching and have a couple consultations with colorectal surgeons who do a lot them in your area. Decide who and where is doing it, get the surgery booked as it will be a few months at minimum until they can get to you. The longer you wait, the more risk and more likelyhood of needing chemo therapy, should they find actual cancer after removal.

Songlady had an area of dysplasia she was having monitored and upon colorectal surgery they found cancer, and she's currently undergoing chemo as a precaution. A few posts from her on that process:

/www.healingwell.com/community/default.aspx?f=38&m=3965781
/www.healingwell.com/community/default.aspx?f=38&m=3971620
/www.healingwell.com/community/default.aspx?f=38&m=3986388

What part of NY state are you in? I know 3timechamp is a NYer and had colorectal surgery early this year.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

My reviews on Yelp and Trip Adviser will be terrible: @$10,000 a night with uncomfortable beds and awful food, but at least the drugs are good at this hospital.

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4118
   Posted 6/15/2018 8:32 AM (GMT -6)   
very sad news for you.

cancers grow at different speeds, and that even varies by individual.

it may help to think if you heard you had stage-0 cancer in the kidney or pancreas or other organ - how long would you wait before getting the cancer removed? OR, how would you feel if once they removed you colon, the pathology report said stage-1 cancer, and recommended surveillance of surrounding tissues and organs.

at least begin talking to surgeons and getting all possible information.

good luck
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 1060
   Posted 6/15/2018 8:38 AM (GMT -6)   
It never hurts to get a second opinion, but it sounds like your GI Doc already did that. I wonder if an oncologist would know more about it than a GI doc?
DX Ulcerative Pancolitis 2003. Subsequent flares limited mostly to left side
Flare every 2-3 years that is bad enough to require Pred.
9x Salofalk tabs, Sulfa free Rowasa nightly and Canasa each morning
Probiotics: Florastor Fiber: Psyllium.

Back in remission after getting rid of c-diff with Vanco, and a quick blast of Prednisone to cool things down.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16427
   Posted 6/15/2018 9:06 AM (GMT -6)   
If your doctor thinks waiting until november is okay, they probably know best. November is only about 5 months away. In reality, it takes some time to get yourself organized and scheduled. I would think, if you started planning today, you probably wouldn't get in for a month or two, but in emergencies it happens faster. The first step is consulting with surgeons. Did you get referrals, or have you looked around? You can ask the surgeon about waiting, and whether it's a good idea too. When is the cruise? If you had surgery in a week or two (just saying), and the cruise is in 3 or 4 months, you will be well enough to go with your ostomy. I know it sounds difficult, but it's really not that big of a deal. I took a trip with my bag. I just packed some extras and wore a small one under my high waist bottoms when I swam. I was able to tuck it in, and the bottom was ruched, no one knew I had anything. It's actually very easy to hide, especially under dresses. Consult and see what you find out. It is low grade, which people often monitor for vs having surgery, but the fact that it's so widespread, so quickly, is worrisome.

Full recovery for me, didn't take that long, but it's very independent. Some people go back to work within weeks. Some people take a month - two months. I was feeling pretty well within a few weeks.
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

Post Edited (notsosicklygirl) : 6/15/2018 8:10:02 AM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30681
   Posted 6/15/2018 11:53 AM (GMT -6)   
Regarding Songlady's surgery....she has mentioned she should have gotten her colon out much sooner than waiting.

None of us can say wait and all is fine. My concern would be the change in one year.

But in saying that....dysplasia type of cells could state the wait, how deep into the layer..etc. i would also suggest discussing about having a chromoendoscopy that might give a better view of abnormal cells in that area or other areas.

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/Oxeze/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 50 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 !!

Coral
Regular Member


Date Joined Oct 2015
Total Posts : 66
   Posted 6/15/2018 2:24 PM (GMT -6)   
Thank you all, I think right now I'm in shock. I just pulled up my last 3 prior to this one and no dysplasia was listed on all. I just don't understand how I can go fom no dysplasya anywhere to it being everywhere. My dr I saw in 2015 had me listed to repeat colonoscopy in 5 years I didn't think that was right and I didn't think he had any knowledge of uc so I found a new dr who said every year if I just stuck with dr one I wouldn't even know yet because it would be 2020 he wanted me to had it done. My dr. last year moved so I had to find a new dr this year so I went an hour and half away glad I found him. I live centeral NY between Rochester and Binghamton.
UC about 20 years also have Raynaud's phenomeenon andd many allergies
Lialda 4, 1.2 g daily
(Prior Asacol HD 800 mg 3x day)
Casana
Probioptic
Allergic to Wheat, Dairy, Tree fruits, Tree nuts, Honey, Onions
Potassium 20 meq 3x a day
Zyrtec, Singular daily
Azelastine nose spray 2x a day
Multi vitamin daily

Uniform Charlie
Veteran Member


Date Joined Jul 2015
Total Posts : 703
   Posted 6/15/2018 5:50 PM (GMT -6)   
Save the cruise as a celebration when you rid yourself of UC for good. If it were me I would not wait. Think about making the drive to NY city if you can't find experienced surgeons in your area.
Diagnosed Proctosigmoiditis (UC) February 2015
Hiatial Hernia w/ GERD
Current Meds: Lialda 1.2gm 2x daily (discontinued for now), duloxetine, rowasa as needed, VSL3 occasionally, One a Day Multi-Vitamin
Did SCD for about 2 years but lost willpower. Want to get back to it at some point.

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1981
   Posted 6/15/2018 7:01 PM (GMT -6)   
Have you been to the IBD center in Rochester? They are about 90 minutes from me but I have heard good things about them. I would want a second opinion, so sorry you got this news.
43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda (sfRowasa when needed)- 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.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 6/15/2018 7:55 PM (GMT -6)   
I don't know where that last guy came from, but sounds like an old fashioned medicine man from the 1800's who used to sell stuff off his wagon. Anyhoo…...I think you got great advice from the people in here, who are with and without colons. I don't know your age, or just how bad your UC is and your medications. I was 63 when I underwent the surgery to remove my colon and rectum, prednisone dependent, and sick as a dog. I was hospitalized for 11 days and it took a good six months before I actually felt well. Everyone, and I do mean everyone, is different in the varying degrees of this disease and all have different results from medications etc. You seem perplexed as to why you could go from a colonoscopy which showed NO dysplasia last year to mild dysplasia this year. No one knows what lurks inside our bodies. I had a girlfriend who waited a year and a half between mammograms instead of her usual once a year. The mammogram from a year and a half ago was completely normal. The recent mammogram showed stage 2 breast cancer.

MarkWithIBD
Regular Member


Date Joined Jun 2018
Total Posts : 44
   Posted 6/15/2018 9:19 PM (GMT -6)   
Only your medical team can tell you how aggressive the dysplasia is. Nobody here can say how much time you have before it becomes cancer. It may never become cancer, or it could start this month. Just remember that dysplasia is not cancer, but it can be pre-cancer. It depends on what the analysis of the samples says. I only know this because someone in my family had colon cancer, but he didn't discover it until it was already stage 2 (in the lymph nodes). He had an area with a cancerous growth and then further up the bowel there was lots of dysplasia that was transforming quickly into more cancer, but that's probably because he already had cancer.

Anyway, it sounds like you need to talk this over more with your doctors. If they say you can deal with this after your vacation then go enjoy yourself.

Coral
Regular Member


Date Joined Oct 2015
Total Posts : 66
   Posted 6/16/2018 12:28 AM (GMT -6)   
momto2boys said...
Have you been to the IBD center in Rochester? They are about 90 minutes from me but I have heard good things about them. I would want a second opinion, so sorry you got this news.



I actually am going to Rochester IBD center. Where do you live because they are about 90 minutrs from me also but nobody near me is any good in my opinion the one in my town wanted me to do my scopes 5-10 years apart which if i stuck with him i wouldn't of had these last 3 scopes and not due until at least 2020 so this wouldn't of been caught for another 2 years.

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3652
   Posted 6/16/2018 7:46 AM (GMT -6)   
Hi Coral -
So, others have mentioned my story. Colonoscopies had been disclosing abnormal cells for me for about 1 1/2- 2 years, random abnormal cells, so I was having colonoscopies every 6 months. Last Fall suddenly there was a stricture where there had been none only 6 months before, so I quickly scheduled my surgery.

My GI (and my whole medical team) is associated with Yale.

My GI had been urging me to talk with the surgeon for about 2 years and I resisted. My UC was only mildly active and I felt great! And I, like you, had plans - I was leading a tour group overseas on a vacation tour last Fall! So, I did that. And then I traveled a lot within this country, because my FIL was ill and then died. And six weeks before my surgery I was in a 5K (I walked, I didn't run, lol) So in retrospect I am glad I did all those things, but, BUT..... if I'd had the surgery earlier, could I have avoided these 6 months of chemo? I will always wonder, though I am not beating myself up about it.

I would say, talk to your GI, talk with a surgeon, maybe an oncologist? Ask if a CT scan would be helpful? I did a HIAA 5 test a year ago for the oncologist (urine collection after a specific diet for a few days) and it ruled out carcinoid syndrome, but did not find the existing adenomatous cancer... so that was a false reassurance for me.

I had always assumed/planned that I would not need surgery, that my UC would be addressed by ever newer meds. I REALLY resisted. But.... it's not bad at all. I love having my breakfast with 2-3 cups of coffee and not needing the bathroom for a few hours! And my list of "safe foods" keeps expanding to things I have not eaten in a decade or two!

If I can be of help, please ask away, and/or tag me in a post. I am keeping you in my thoughts as you work through that feeling of shock. (I remember that feeling well!)
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

Coral
Regular Member


Date Joined Oct 2015
Total Posts : 66
   Posted 6/16/2018 1:41 PM (GMT -6)   
Your story sounds a lot like mine. I never concered the surgery route. I seemed to manange well didn't really take any medication for years when I felt like a flare I was able to manage by altering my diet and rest until 2015 it really got a hold of me but I still went zip lining while in a full flare and then drove my Mom from Fl to Tx two 10 hour days then flew to NYC to see my daughter I was then going to drive our car back home a 5 hour drive because they had borrowed our car but I ended up having my daughter drive me so she then knew something was wrong (I really tried hiding it from everyone) The next day I ended up in ER being admitted for a few days and by the end of that month I was doing much better. The dr I had seen said I didn't need to be scoped for another 5 to 10 years and I didn't think he really knew much about uc so i found a different dr she scoped my the following year 2016 and I ended up being so frail that she had to put in 13 clips because I ripped in several areas. Last year though the scope seemed fine then she told me she was moving and I had to find a new dr so I went an hour and a half from home saw him and scheduled the scope for May 9th this year. He did say he could tell I've had uc for a long time (over 20 years) but he didn't seem concerned. waited for the results after 2 weeks I called and found out they sent the results out, concerned me a little but then when two more weeks passed I wasn't concerned because I thought no way anything is showing up taking that long get on the plane to go back to TX to take my Mom back to FL turn phone in airplane mode at 3:00 and when we land see I missed a call at 3:06 from my dr had to wait another day to call then wait all day knowing something is up he finally called me at 5:30 he apologized several times for having to give me this news and over the phone. I don't go back home until Aug 22 he said that was fine to wait to see surgeon he was going to contact and set things up and I'll probably have another scope around that time and go from there. I'm just in shock because I read all the posts on here and think I felt lucky I wasn't as bad in hindsite I guess I was in denial a lot I worked in an office where I had a bathroom right there so I never really thought about how much I was going and how I would always be aware of where bathrooms were but it didn't stop me from doing much I would travel, I coached high school cheerleading and had to travel by bus for games and I thought now way will I ever need the surgery so with this I'm in shock I can't process it.
Sorry for the long post I guess I'm so privite I can't bring myself to talk to my husband and family about it I've told them but have downplayed it and downplayed how I'm feeling. I've told my sister and made her swear not to tell her husband or family I'm not one that likes people saying poor you and right now I can't deal with that I just need facts and what people have gone through and how long the hospital and recovery is and what all is involved with the surgery.
Thank you all for your help.


songlady said...
Hi Coral -
So, others have mentioned my story. Colonoscopies had been disclosing abnormal cells for me for about 1 1/2- 2 years, random abnormal cells, so I was having colonoscopies every 6 months. Last Fall suddenly there was a stricture where there had been none only 6 months before, so I quickly scheduled my surgery.

My GI (and my whole medical team) is associated with Yale.

My GI had been urging me to talk with the surgeon for about 2 years and I resisted. My UC was only mildly active and I felt great! And I, like you, had plans - I was leading a tour group overseas on a vacation tour last Fall! So, I did that. And then I traveled a lot within this country, because my FIL was ill and then died. And six weeks before my surgery I was in a 5K (I walked, I didn't run, lol) So in retrospect I am glad I did all those things, but, BUT..... if I'd had the surgery earlier, could I have avoided these 6 months of chemo? I will always wonder, though I am not beating myself up about it.

I would say, talk to your GI, talk with a surgeon, maybe an oncologist? Ask if a CT scan would be helpful? I did a HIAA 5 test a year ago for the oncologist (urine collection after a specific diet for a few days) and it ruled out carcinoid syndrome, but did not find the existing adenomatous cancer... so that was a false reassurance for me.

I had always assumed/planned that I would not need surgery, that my UC would be addressed by ever newer meds. I REALLY resisted. But.... it's not bad at all. I love having my breakfast with 2-3 cups of coffee and not needing the bathroom for a few hours! And my list of "safe foods" keeps expanding to things I have not eaten in a decade or two!

If I can be of help, please ask away, and/or tag me in a post. I am keeping you in my thoughts as you work through that feeling of shock. (I remember that feeling well!)

UC about 20 years also have Raynaud's phenomeenon andd many allergies
Lialda 4, 1.2 g daily
(Prior Asacol HD 800 mg 3x day)
Casana
Probioptic
Allergic to Wheat, Dairy, Tree fruits, Tree nuts, Honey, Onions
Potassium 20 meq 3x a day
Zyrtec, Singular daily
Azelastine nose spray 2x a day
Multi vitamin daily

Post Edited (Coral) : 6/16/2018 3:22:37 PM (GMT-6)


FlowersGal
Regular Member


Date Joined Feb 2017
Total Posts : 490
   Posted 6/17/2018 11:01 PM (GMT -6)   
I might possibly be in the same position soon. Will be having my second "blue dye" colonoscopy in August to see if another low-grade dysplasia shows up. I keep trying to prepare myself for losing my colon (it seems to hate me anyway!) but most of the time I am in the lovely land of Denial.

It's a hard thing to wrap your mind around, having to deal with surgeries and possible bags, although the thought of not worrying about colon issues anymore is attractive, I'm not sure it's THAT attractive. I'd much rather go on as I am now, since Entyvio has me feeling pretty dang good.

::sigh:: I guess that's life, eh?
UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam as needed
Supplements: Zinc, L-glutamine, Probiotics: Reuteri pearls, VSL #3, Folic Acid, CoQ10, turmeric, boswellia, milk thistle, NAC, reservatol, colostrum, glycine
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!

Coral
Regular Member


Date Joined Oct 2015
Total Posts : 66
   Posted 6/18/2018 9:21 PM (GMT -6)   
my prior Dr who moved called me back tonight and she recommends another colonoscopy with the blue dye never had that done but she really thinks I need to have the surgery sooner rather then later so now I'm in the process of flying back to NY $400 more for flight because of timing. i have a lot of calls to make tomorrow.
UC about 20 years also have Raynaud's phenomeenon andd many allergies
Lialda 4, 1.2 g daily
(Prior Asacol HD 800 mg 3x day)
Casana
Probioptic
Allergic to Wheat, Dairy, Tree fruits, Tree nuts, Honey, Onions
Potassium 20 meq 3x a day
Zyrtec, Singular daily
Azelastine nose spray 2x a day
Multi vitamin daily

Coral
Regular Member


Date Joined Oct 2015
Total Posts : 66
   Posted 6/18/2018 9:36 PM (GMT -6)   
is there a list of questions on here somewhere of what to ask my surgeon before hand. What I need to know about.
UC about 20 years also have Raynaud's phenomeenon andd many allergies
Lialda 4, 1.2 g daily
(Prior Asacol HD 800 mg 3x day)
Casana
Probioptic
Allergic to Wheat, Dairy, Tree fruits, Tree nuts, Honey, Onions
Potassium 20 meq 3x a day
Zyrtec, Singular daily
Azelastine nose spray 2x a day
Multi vitamin daily
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