extensive low grade dysplasia

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Coral
Regular Member


Date Joined Oct 2015
Total Posts : 65
   Posted 6/19/2018 12:52 AM (GMT -6)   
Anyone in the Rochester NY area have the surgery and recommend a surgeon?
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) : 6/18/2018 11:55:24 PM (GMT-6)


Coral
Regular Member


Date Joined Oct 2015
Total Posts : 65
   Posted 6/19/2018 12:53 AM (GMT -6)   
marcell said...
Coral said...
is there a list of questions on here somewhere of what to ask my surgeon before hand. What I need to know about.


I saw you raynaud's. Do your fingertips really get blue/darker or completely pale?



They can get almost black at times. Just touching something cold causes pain. I've had Raynaulds since 1978 so a long time with that my toes gets sores at times from it. Do you have it?
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 : 13214
   Posted 6/19/2018 7:52 AM (GMT -6)   
Coral said...
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.
Chromoendoscopy sounds smart, they going to do more biopsies?

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13214
   Posted 6/19/2018 7:56 AM (GMT -6)   
Coral said...
is there a list of questions on here somewhere of what to ask my surgeon before hand. What I need to know about.
I'm sure there are lists out there, but mostly you need to ask what you're worried about.

What do you need to know in advance to feel better about the prospect of colorectal surgery: worried about recovery time, number of surgeries you will need (1, 2, or 3), time between surgeries, pain, time until you can return back to work after each surgery, etc?

Ask if you are a candidate for a j-pouch, are there other tests they can do to reduce the odds of you being misdiagnosed with crohn's (and therefore not a j-pouch candidate)?

Are you aware of the various risks associated with a surgery (pouchitis, abscesses, adhesions, reduced-fertility, etc.)?

Certainly ask how many surgeries he/she has done for end-ileos and j-pouches, and how often they are done. Ask whether they are doing robotic-assisted, laproscopic, or open surgeries.

Post Edited (iPoop) : 6/19/2018 6:59:44 AM (GMT-6)


Coral
Regular Member


Date Joined Oct 2015
Total Posts : 65
   Posted 6/19/2018 11:08 AM (GMT -6)   
iPoop said...
Coral said...
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.
Chromoendoscopy sounds smart, they going to do more biopsies?


Now not sure about the blue dye my current Dr said he talked with others and with how excensive my dysplasia is it wouldn't do any more but to see what the surgeon says. I have an appointment with the surgeon on June 28 and then in the afternoon with my Dr
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

countess18
Regular Member


Date Joined May 2016
Total Posts : 276
   Posted 6/19/2018 11:11 AM (GMT -6)   
Holo

My test was called a CT angiogram-- not arteriorgram so maybe you heard it wrong?

Coral
Regular Member


Date Joined Oct 2015
Total Posts : 65
   Posted 6/19/2018 11:11 AM (GMT -6)   
iPoop said...
Coral said...
is there a list of questions on here somewhere of what to ask my surgeon before hand. What I need to know about.
I'm sure there are lists out there, but mostly you need to ask what you're worried about.

What do you need to know in advance to feel better about the prospect of colorectal surgery: worried about recovery time, number of surgeries you will need (1, 2, or 3), time between surgeries, pain, time until you can return back to work after each surgery, etc?

Ask if you are a candidate for a j-pouch, are there other tests they can do to reduce the odds of you being misdiagnosed with crohn's (and therefore not a j-pouch candidate)?

Are you aware of the various risks associated with a surgery (pouchitis, abscesses, adhesions, reduced-fertility, etc.)?

Certainly ask how many surgeries he/she has done for end-ileos and j-pouches, and how often they are done. Ask whether they are doing robotic-assisted, laproscopic, or open surgeries.



Thank you this is helpful. I have an appointment with the surgeon and my Dr. on June 28th.
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 : 65
   Posted 6/19/2018 11:18 AM (GMT -6)   
I took everyone's advice and after talking with my prior Dr. I have changed my flight to NY.
Any other advice, insite or whatever is truely apprecaited. Thank you all for your help.

Post Edited (Coral) : 9/8/2018 3:16:15 PM (GMT-6)


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 6/19/2018 11:35 AM (GMT -6)   
Good luck with your appointment and keep us posted. I am glad you are not waiting to meet with them.
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. Trying to re-quit smoking. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax

quincy
Elite Member


Date Joined May 2003
Total Posts : 30992
   Posted 6/19/2018 12:51 PM (GMT -6)   
The only other advice I have is talk with your genetic family. The fact is that you have colon dysplasia, and it's important for them to know and decide their own screening....which you can encourage.
If you have children, I suggest they get a c-scope baseline with biopsies.

As well, ask what type of cells regarding the dysplasia.

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 !!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13214
   Posted 6/19/2018 1:00 PM (GMT -6)   
Sounds like you made the smart decision, get the consultation and things moving along! Make the Nov trip a celebration that you got rid of your UC once and for all!

If you're in otherwise good UC shape (not flaring, not on pred, not on biologics, and not on immunomodulators) you are likely a candidate for a 1-step or 2-step procedure. You'll heal faster and have less chance of infections without those aforementioned medications, as well.

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3694
   Posted 6/19/2018 2:01 PM (GMT -6)   
Glad to hear you have the appointment!

Denial was a huge thing for me, for years. In fact, I was so good at it (and hiding symptoms) that when I was referred for surgery, my husband thought I maybe should not have it! Wow, did he eat his words (and they caused him GI distress, lol....)

Stay in touch. You are doing the right thing.
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

Oligodar
Regular Member


Date Joined Jul 2017
Total Posts : 46
   Posted 6/19/2018 2:33 PM (GMT -6)   
Hi, when I was diagnosed with colon carcinoma I wanted operation as soon as possible. I had surgery within two weeks after diagnosis. It saved me from extensive and painful chemotherapy. I would recommend you surgery as soon as possible.
==========================================================
Ulcerative Colitis for 34 years. 14 years ago sigmoideum adenocarcinoma - surgery successful
==========================================================
Salofalk 500 mg - 6 tablets, Entocort Enema 2mg, Mirtazapine 30 mg, Magnesium
==========================================================

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 6/19/2018 4:38 PM (GMT -6)   
I think you're making a smart decision to move faster. The situation definitely sounds like it's necessary, and even if you *could* wait until November, there really isn't much reason to, as you definitely need surgery, and waiting would potentially allow time for things to progress. I know none of us ever hope for colon surgery, but it's better than the alternative in situations where it's warranted.

Things to ask:
    i'd ask about what to expect so far as the hospital stay....
  • Will you have a private room?
  • How many days do they expect you to be there?
  • Will you have a home nurse to come by your home once you're out?
  • How many meetings?
  • Will you have a WOCN available during and after your stay?
  • Will you meet her in advance of your procedure?
  • Can you see her after if needed?
  • Will you receive supplies and resources in advance?
  • What procedure are you having? Collectomy? IPAA?
  • If IPAA how many steps?
  • How long between steps?
  • People generally ask about fertility if they are of childbearing age...
  • Likelihood of complications, adhesions, surgical pain management...
  • about prep
  • Follow-up, how often?
  • When will you know about the pathology from surgery?

    There's a lot to think about, but it all works out once it's happening. I had insurance considerations personally. My surgeon was "out of network" and I wanted to get through all the steps in the same calendar year. I started in June I think, and I pulled off all 3 steps before Dec.

    Sample supplies can be fun, but you will not be able to order them until you've had surgery. You will measure the stoma and then you can figure out what works for you. The home nurse should be able to get you headed in the right direction. Once you know what works, you can order all the different brands, and try products. Some of the companies send fairly large packages of samples.

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

Coral
Regular Member


Date Joined Oct 2015
Total Posts : 65
   Posted 6/19/2018 6:20 PM (GMT -6)   
Thank you so much this is so helpful. What is WOCN? How long after surgery will I be able to take care of myself I'm a very independant private person and would rather take care of myself then having someone hovering over me.


notsosicklygirl said...
I think you're making a smart decision to move faster. The situation definitely sounds like it's necessary, and even if you *could* wait until November, there really isn't much reason to, as you definitely need surgery, and waiting would potentially allow time for things to progress. I know none of us ever hope for colon surgery, but it's better than the alternative in situations where it's warranted.

Things to ask:
    i'd ask about what to expect so far as the hospital stay....
  • Will you have a private room?
  • How many days do they expect you to be there?
  • Will you have a home nurse to come by your home once you're out?
  • How many meetings?
  • Will you have a WOCN available during and after your stay?
  • Will you meet her in advance of your procedure?
  • Can you see her after if needed?
  • Will you receive supplies and resources in advance?
  • What procedure are you having? Collectomy? IPAA?
  • If IPAA how many steps?
  • How long between steps?
  • People generally ask about fertility if they are of childbearing age...
  • Likelihood of complications, adhesions, surgical pain management...
  • about prep
  • Follow-up, how often?
  • When will you know about the pathology from surgery?

    There's a lot to think about, but it all works out once it's happening. I had insurance considerations personally. My surgeon was "out of network" and I wanted to get through all the steps in the same calendar year. I started in June I think, and I pulled off all 3 steps before Dec.

    Sample supplies can be fun, but you will not be able to order them until you've had surgery. You will measure the stoma and then you can figure out what works for you. The home nurse should be able to get you headed in the right direction. Once you know what works, you can order all the different brands, and try products. Some of the companies send fairly large packages of samples.

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

marcell
Regular Member


Date Joined Mar 2018
Total Posts : 128
   Posted 6/19/2018 9:10 PM (GMT -6)   
Coral said...
marcell said...
Coral said...
is there a list of questions on here somewhere of what to ask my surgeon before hand. What I need to know about.


I saw you raynaud's. Do your fingertips really get blue/darker or completely pale?



They can get almost black at times. Just touching something cold causes pain. I've had Raynaulds since 1978 so a long time with that my toes gets sores at times from it. Do you have it?


I was in doubt. My fingertips don't get whiter than the rest of my hand, nor blue or black. It's just that when I get very stressed, I start shaking and my hands get colder. But it's not that pale white. It's just white. Fingertips are usually red or as white as the rest of the skin. So I don't think I have it.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 6/19/2018 9:14 PM (GMT -6)   
it's a nurse who specializes in wound care, ostomies and continence. It's something you wouldn't know about unless you schedule surgery. I had one. A few days before the procedure I met up with her. She was beautiful and smart and compassionate. Totally made me look at things from a different perspective. She had seen people from all walks of life. I cried, of course. it's a lot to deal with. It's scary. She let me know that everything was going to be okay. She taught me the basics. She showed up after my first surgery and helped me change my pouch. They are usually available to you afterwards too. I didn't need help after I healed. I got along quite well with my ostomy.
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

Coral
Regular Member


Date Joined Oct 2015
Total Posts : 65
   Posted 6/19/2018 9:57 PM (GMT -6)   
marcell said...
Coral said...
marcell said...
Coral said...
is there a list of questions on here somewhere of what to ask my surgeon before hand. What I need to know about.


I saw you raynaud's. Do your fingertips really get blue/darker or completely pale?



They can get almost black at times. Just touching something cold causes pain. I've had Raynaulds since 1978 so a long time with that my toes gets sores at times from it. Do you have it?


I was in doubt. My fingertips don't get whiter than the rest of my hand, nor blue or black. It's just that when I get very stressed, I start shaking and my hands get colder. But it's not that pale white. It's just white. Fingertips are usually red or as white as the rest of the skin. So I don't think I have it.


Maybe begining stages. I'll never forget the first time it was my left pinky in my softball glove took the glovr off abd my whole pinky was pure white. It then progressed from there more fingers, toes, nose and even my ears at times but as the years have past and there have been many years I have to wear gloves at the theater at times and I have to always have my drink wrapped in many napkins or wear gloves. I can't eat yogurt without it being wrapped in something. There's nothing they do for it. Once I was at a symphony and the person next to me asked it I had it he said he could tell he was a Dr..
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

marcell
Regular Member


Date Joined Mar 2018
Total Posts : 128
   Posted 6/19/2018 11:20 PM (GMT -6)   
Coral said...
marcell said...
Coral said...
marcell said...
Coral said...
is there a list of questions on here somewhere of what to ask my surgeon before hand. What I need to know about.


I saw you raynaud's. Do your fingertips really get blue/darker or completely pale?



They can get almost black at times. Just touching something cold causes pain. I've had Raynaulds since 1978 so a long time with that my toes gets sores at times from it. Do you have it?


I was in doubt. My fingertips don't get whiter than the rest of my hand, nor blue or black. It's just that when I get very stressed, I start shaking and my hands get colder. But it's not that pale white. It's just white. Fingertips are usually red or as white as the rest of the skin. So I don't think I have it.


Maybe begining stages. I'll never forget the first time it was my left pinky in my softball glove took the glovr off abd my whole pinky was pure white. It then progressed from there more fingers, toes, nose and even my ears at times but as the years have past and there have been many years I have to wear gloves at the theater at times and I have to always have my drink wrapped in many napkins or wear gloves. I can't eat yogurt without it being wrapped in something. There's nothing they do for it. Once I was at a symphony and the person next to me asked it I had it he said he could tell he was a Dr..


I don't know. But I don't think it looks like that. It's not that pale white. And if I start to touch the fingers, they start to become red right away. My hand is one of the first parts of my body to feel the cold.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13214
   Posted 6/29/2018 7:08 AM (GMT -6)   
Glad to hear it went well, and the gears are in motion to solve it!
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Breakfast is a lot less appetizing when you're still nauseous and sore after poops; thanks uc.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 6/29/2018 10:30 AM (GMT -6)   
Great news Coral. Please keep us updated & feel free to ask any questions. smile
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 : 30992
   Posted 6/29/2018 12:42 PM (GMT -6)   
Sounds to be a best decision even more.
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 (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 : 65
   Posted 7/3/2018 1:08 PM (GMT -6)   
Looks like tentatively August 6th is the surgery the problem having the endoanal ultrasound scheduled they are having a difficult time scheduling that they are the only ones that do that ultra sound in the area.
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

quincy
Elite Member


Date Joined May 2003
Total Posts : 30992
   Posted 7/3/2018 1:39 PM (GMT -6)   
Hope they can coordinate for their own schedule....always something 😐
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 (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 : 65
   Posted 7/11/2018 5:16 PM (GMT -6)   
Well they scheduled two appointments for me for July 23 without even seeing if I was available those days, I am but I never had doctors schedule me with out asking me let alone 2 appointments. I am sheduled for the ultra sound Aug 3 and Surgery Aug 6. Starting to hit me now.
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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