Bad doctor visit... please help

New Topic Post Reply Printable Version
37 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 6/5/2008 5:12 AM (GMT -6)   
So I thought I was feeling great but when I went to the doctor yesterday he told me that they found low grade dysplasia after doing the colonoscopy. He advised me that removal would be a good idea to eliminate any future risks. I am going to a another doctor in Manhattan tomorrow who will be performing the surgery if needed. Any advise would help. Im scared and this is happening way to fast. Thank you
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/5/2008 6:13 AM (GMT -6)   
Jr, I'm so sorry! But then, I read your signature and think this could end up being a blessing for you in two ways. First, the dysplasia was found early and you can take action before it becomes a life-threatening cancer. Second, it could possibly give you back the things you miss.

I know most of us fight surgery for as long as we can, but I've never seen anyone who had it say they regretted it. It's scary and it's major surgery, but most of the people who have either ostomies or pouches feel good and live normal lives. As you're making your decision, I'd suggest you visit the ostomy board here and go to j-pouch.com to educate yourself about that procedure.

I'll be praying for you today, good luck with your consultation with the surgeon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 6/5/2008 6:23 AM (GMT -6)   
I totally agree with Judy. I read your signature and thought the same thing. I know surgery will be a long recovery, but so what. What is a couple months compared to the rest of your life not having to worry if you will make it to the bathroom. And the cancer risk, all gone after the surgery. I know it is easy for me to say, and i know it is a big decision, but you will make the right one and it will be difficult, but you will get through it. I wish you the best with your consultation, and your decision. Keep us posted, and know that I am thinking of you today
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 6/5/2008 8:04 AM (GMT -6)   
Before you make any irreversible decisions, I'd encourage you to check out Dr. Ronald Hoffman, since I'm assuming you live in the NYC area from your screen name. Here's some info from his Web site detailing how he treats IBD. I'd want to make sure I'd exhausted all options before I considered surgery.

http://www.drhoffman.com/page.cfm/171
http://www.drhoffman.com/page.cfm/169
http://www.drhoffman.com/page.cfm/170


Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal.
 
 


JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 6/5/2008 10:40 AM (GMT -6)   
Thanks for the replies :)))))) Princesa... I have definitely tried all sorts of treatments for colitis in the past 10 years and for the most part I have felt good enough to live a "normal" life but the problem here is not colitis. Its the risk of developing cancer. Something I'm not willing to chance. I'm scared as hell right now but when it comes down to it... I want it out. Yeah it stinks that its summer time and I'm going to be down for the count for most of it but in the end it will hopefully change my life for the better. Thank you again. I will let you all know what the doc says tomorrow :)
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 6/5/2008 10:44 AM (GMT -6)   
so sorry to hear how this is happening for you- you know, often people considering surgery will say "I wish they would find dysplasia" so that the decision to have surgery would be a no-brainer. But in reality, it's scary & fast & just not good at all. Keep us posted!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/5/2008 10:56 AM (GMT -6)   

Dear Jr.,

I feel for you.  I am facing a similar situation, but do not know if it really is dysplasia yet.  I am praying it is not.  I hope all gets better for you.  My sisters friend had the surgery and she said she wished she had done it long ago because she feels so much better.  Good luck, I'll pray for you, God Bless You during this time of need. 

Lori (Bellski)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/5/2008 11:11 AM (GMT -6)   
JrNYC,

As stated above, the ostomy board and j-pouch.org are great sites. I've also come across to other great ones while researching surgery myself... www.ColonClub.com (reading the personal experiences is great) and www.uoaa.org

The more research you do, the better you'll feel about it. If you end up needing surgery you'll want to go in knowing as much as you possibly can so you don't want up surprised and upset!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/5/2008 11:51 AM (GMT -6)   
Would you be able to wait until fall for the surgery? I know what you mean about not wanting to be down for the summer.

Best of luck!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 6/5/2008 5:20 PM (GMT -6)   
I hope you're not consulting with Dr. Ullmann re low-grade dysplasia because he has a reputation for wanting to yank colons out right away. Dr. Daniel Present, who is one of the foremost IBD gastros in the U.S., disagrees with that approach-- so a consultation with him would be much more valuable, I think. Low-grade dysplasia can heal itself. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 6/6/2008 12:33 AM (GMT -6)   
Like everyone else, I am sorry to hear that you are facing this kind sudden news. I agree with Old Hat that Dr. Present is someone to consult. He is at the forefront of UC research and would be very helpful, I believe. The one question I would have first about the dysplasia is where was the biopsy done and what is the accuracy rate? Would a second test be worth doing for confirmation? I'm not saying that I'd assume the test wasn't right; I'm just thinking that for some tests that come back positive, sometimes the doctors like to run them again. I don't know if that's the case here, but it would be good know.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 6/7/2008 5:53 AM (GMT -6)   
Thank you again for all your replies... you have been soooo helpful. I went yesterday to see the doctor for my second opinion. From what he can tell from my last colonoscopy it looks as if this might not be as much of a concern as we thought but obviously I'm not getting too excited. Monday I am having another colonoscopy where he will biopsy everything and we will know better. He said the pathology report was definitely on the positive side. This doesn't mean I'm in the clear but I feel a little better knowing that he will do a thorough test. He explained to me the J-Pouch surgery in case there is ever a need to consider this in the future but for now I'm not even thinking about that... I'M GOING TO THE BEACH!!!!!!!!!!!!!!!
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/7/2008 9:45 AM (GMT -6)   
Enjoy the beach and just take one day at a time. I'm glad you don't need the surgery, at least for now. Take Care, Lori (Bellski)

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 6/7/2008 7:06 PM (GMT -6)   
Glad you're back in fighting spirit. Good luck with the follow-up c-scope & please keep us posted. May good health continue ... / Old Hat

njpublish
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 6/9/2008 2:59 PM (GMT -6)   
Im new here and after having left side colitis for 18 years was diagnosed with low grade dysplasia from two biopsies. My doc biopsied the hell out of my colon last month. You can look as long and hard as you want....but I have yet to find one medical study that does NOT support removing the colon when dysplasia has been confirmed by two different pathologists.
Im speaking to surgeons this week. Show me ONE piece of literature that says otherwise?

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 6/9/2008 6:14 PM (GMT -6)   
Low-grade dysplasia does not necessarily lead to malignancy. However, in cases of UC where colorectal cancer runs in the patient's family, gastroenterologists are more inclined to recommend preemptive surgery. Surgeons exist to perform surgery-- no matter which study says what. Hospital administrations have a vested interest in the performance of surgery on their premises because it increases their reimbursement rates, etc. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission; thankful it is working because I have zero faith in surgeons/surgery.)

pupluv
Regular Member


Date Joined May 2007
Total Posts : 256
   Posted 6/9/2008 6:33 PM (GMT -6)   

JR, I am so glad to hear you are getting a second opinion. I was diagnosed with low grade dysplasia last year and was told I needed to have my colon out. I met with a surgeon and he just wanted to take it out right away. It also happened so quickly and I was devastated. I have always known this could be a possibility but I just wasn't ready. I had moved to another city, so I went back to the GI that had been treating me for 10 yrs and I trust him. Anyway, he sent the biopsy to his pathologist and I was told that the dyplastic cell they found needed to be DNA tested because it just didn't look right. I just knew that it was dysplasia and I would have to have my colon out. Well, guess what? It came back that the dysplasia they found was a floater cell and my biopsy had been contaminated with someone else's cell! I still have my colon so far and am having a colonoscopy done in a couple of weeks. A little nervous about that. But my pt. is...Always have a second opinion. You never know what could happen. If it did come back as dysplasia I would have done the surgery...reluctantly. But cancer is just tooo scary. Good Luck to you and again, Glad to hear you are having another scope done.

Donna

 


Donna
Diagnosed with indeterminate colitis in 1992
current meds
4 asacol 3x's a day
Azathioprine
Rowasa enemas as needed
VSL3
Bunches of vitamins


njpublish
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 6/10/2008 5:49 AM (GMT -6)   
I have not seen one article that says low grade dysplasia in UC patients can heal itself. Countless articles have been written.
LGD= remove colon. And guess what...in those colons that they remove from patients with LGD, a scary high percentage have cancer.
http://www.experts.com/showArticle.asp?id=9

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 6/10/2008 11:29 AM (GMT -6)   
njpublish, a number of UCers posting to this site over the past 2 yrs have written that their low grade dysplasia healed, or, as in Pupluv's case, the cytologist goofed in diagnosing dysplasia. These testimonies support Xtremefit's reminders that the theory of dysplasia is NOT an exact science. You will get better info from many posts to this site than you could find in a lot of medical studies! / Old Hat

njpublish
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 6/10/2008 12:28 PM (GMT -6)   
Thanks. On mine, Dysplasia was  noted on two separate biopsies and confirmed by two different pathologists; both from Mt. sinai in NY; the IBD capital of the world. In my case, its seems like the right decision. Many biopsies were done on patients who had their colons removed and were diagnosed with LGD and  they found a coexistent cancer in a very high percentage. Im talking hard statistics; not antecdotal evidence. If you have LGD and you decide to "'keep an eye on it" I think your sitting on a time bomb. When you have cancer, you're dealing with a whole different animal.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/10/2008 12:30 PM (GMT -6)   
njpublish, remember that inflammation can mimic dysplasia on cytology exam, so it isn't as cut and dried as it may seem.

We're glad to have you here with us at HealingWell, but I'm going to ask that you moderate your tone. The purpose of the forum is to support and share experiences, not to debate or argue over treatments. Everyone has the right to decide what to do with their own bodies. Challenging people to support their decisions is not the best way to enter the forum. Please think and read what you've typed before submitting, because we aren't able to hear tone of voice or see body language, so we only have your words to go by in interpreting your communication.

Thanks for your time, and enjoy the forum.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


njpublish
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 6/10/2008 3:10 PM (GMT -6)   
thanks for the warning. Ill pipe down. Just a little  anxious and want to make sure Im making the right decision.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/10/2008 3:50 PM (GMT -6)   
Understood, njpublish. Based on the information you've been given, I think you'd be foolish not to get a surgical consultation. When dysplasia persists over time, it usually isn't because of inflammation.

When you see the surgeon, be sure to get information on all the possibilities: permanent ileostomy, continent ileostomy as well as the j-pouch. Then augment his or her recommendation with your own research. You can visit the ostomy board here at HealingWell, or j-pouch.com for more information.

We're here to support one another, so please keep us updated on how you're doing!
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 6/10/2008 10:13 PM (GMT -6)   
njpublish-- since you cite Mt. Sinai Hospital in NYC I hope you're consulting with IBD gastro Dr. Daniel Present. In recent yrs he has been debating the dysplasia issue in public & medical forums. You may still be able to locate some of his remarks in transcript form on MedicalCrossfire Website-- "Spotlight on IBD" was one of the panels he participated on. I have major confidence in his judgment because when I was 1st diagnosed with UC in 1980, he was the principal writer of patient info for CCFA, which was then called the Foundation for Illeitis & Colitis. It was extremely hard to get accurate info about IBD in those days-- so I respect him to the fullest for trying to provide it to us before most other physicians even recognized our needs. / Old Hat

JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 6/11/2008 5:09 AM (GMT -6)   
Hi everyone, I had my second colonoscopy on monday and the doctor took a lot of biopsies. He removed the polyp that was there and told me that he took deeper samples to make sure that he was thorough. He said the polyp did not show the characteristics of being troublesome. But we will know for sure in a few days. So from what he saw and obviously he cant be 100% he thinks I will be ok. So hopefully the worst part of this whole thing is the cost of parking meters!!! A quarter for every ten minutes!!! :) anyway thanks again for all your support I will keep you guys up to date.
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.

New Topic Post Reply Printable Version
37 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Friday, April 20, 2018 8:13 PM (GMT -6)
There are a total of 2,953,782 posts in 324,041 threads.
View Active Threads


Who's Online
This forum has 162108 registered members. Please welcome our newest member, any1hearme.
320 Guest(s), 7 Registered Member(s) are currently online.  Details
Canada Mark, California Dreamer, PDL17, Redwing57, NiceCupOfTea, Poppie, straydog