UPDATE... I need surgery :((((((((((((((

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JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 6/27/2008 9:35 AM (GMT -6)   
Well the results from my second colonoscopy came back and they found more dysplasia. Doc wants me to come in monday to start discussing surgery. Im freaking out!!!!!!!!!!!!
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.


gela
Regular Member


Date Joined Jun 2005
Total Posts : 133
   Posted 6/27/2008 9:40 AM (GMT -6)   
that really sucks! i'm so sorry that you are having to go through this. have you been to www.j-pouch.org? i'm contemplating surgery because i've been sick about 9 out of the past 11 years. it's taken me a long time to get used to the idea, but when i think how much better my life will be--not worrying about bathrooms, no pain, can eat what i want--i'm starting to get used to the idea.
no matter what, it's scary. just pray about it and go visit that site. they are very helpful there. they will have more info than your dr's and can probably ease your mind.
good luck
Diagnosed in 1999, hospitalized once.  Not responsive to meds.  Currently on 12 Asacol, , 8 ampules of Gastrocrom, 6 grams Colestid, flagyl, remicade for my UC.  Also have migraines and take B-4, B-2, for the prevention of them.
Deciding whether or not to have surgery at this time.


JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 6/27/2008 9:44 AM (GMT -6)   
Yes i looked on there and it was helpful but then you start reading about the things that can go wrong and im afraid i'll never be able to live a "normal" life. This is so unfair.
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.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/27/2008 9:49 AM (GMT -6)   
Freaking out is understandable. But now that you've had your moment, it's time to start researching. You know the whole line about "the more you know..."

Knowledge is power and you WILL be okay. Just think that soon you'll be able to get back to your pre-UC life! I'm getting jealous...

The j-pouch site has great info.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
20mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion:  06/17/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
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Date Joined Feb 2007
Total Posts : 5167
   Posted 6/27/2008 10:00 AM (GMT -6)   
Sorry that the doctor gave you more upsetting news. No wonder you're freaking out! Did he tell you it is high-grade dysplasia? The whole point to this is getting an accurate report from a very experienced pathologist. Best wishes. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/27/2008 10:25 AM (GMT -6)   

Okay, take a deep breath and relax.  First you have to understand that the jpouch board is heavily used by those who are contemplating surgery, in the early days of recovery, or having problems.  If you look at the site members you will see that there are over 6000 of us registered and we don't often visit the site because we are healthy and engaging in life.  Much like this board most UCers aren't here because they are in remission.  I can tell you that surgery was the best choice I ever made.  I didn't have dysplasia but I did have a flare that despite all medical treatments could not be abated without the chronic use of prednisone.  I was scared, HELL everyone is scared of this surgery and probably all other surgeries.  That's normal.  But I wouldn't trade my life today for my life with UC, even UC in remission.  I no longer have to worry about the possiblity of a flare or do I take medication.  I eat what I want, travel when I want, and don't have to know where every bathroom in town is.  Yes there are trade offs but for me they are mangeable.  Do your research, get a surgical consult with the best surgeon in your area, and take the time to get used to the idea.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/27/2008 10:47 AM (GMT -6)   
that is scary news to hear. I freaked out when I realized it was a real possibility for me. Try to look at is as a new begining and not an end. It has taken me a few months to begin to wrap my head around this. Try to think positively (I know that is very hard!!) let yourself think about all the negatives and how you would deal w/them, then get that out of the way and focus on the new positives that will come from surgery.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/27/2008 11:48 AM (GMT -6)   
I am so sorry to hear the news. Try to look at it as a good thing too if it helps you to be healthier, and I will pray for you to not have any complications. Meanwhile, you may want to get a second and or third opininion (just because it is a serious thing). Although, from what I've read, they may all agree. I was recently told I had possible dysplasia and the second set of biopsies 3 months later showed no dysplasia. The reason for my first biopsies saying dysplasia was due to the fact that I had extreme inflammation that can sometimes look like dysplasia I guess. Did you have any inflammation with this scope? Again, I will keep you in my prayers, everything will be O.K. Get the best doctors if you can. Also, it is good to know now, rather than later, if it was later it may have been cancer. Hang in there, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1,         Canasax X 2 Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


pupluv
Regular Member


Date Joined May 2007
Total Posts : 256
   Posted 6/27/2008 1:03 PM (GMT -6)   

Jr, I'm so sorry about the dysplasia.....I really know how you feel. I was facing the same thing due to a dysplasia diagnosis as well.(found out I did not have dysplasia). I researched till my eyes bugged out and I too was completely freaked. I had decided i would go to the best surgeon I could find. Even if i had to go to Cleveland Clinic. I also wanted in done laproscopically. I have heard that if you are healthy enough, you could have a one step procedure if you find the right doc. I don't know how they do it with dysplasia involved, but I would assume it wouldn't make a big diff. There do seem to be a lot of people with complications, but so many do so well. You will be the one without complications. Think positive and know we are all supporting you!

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/27/2008 1:35 PM (GMT -6)   
i am so sorry to hear that you are having such trouble.
Try not to think of having surgery as the end of the world! i don't know what they are gonna do, an ileo or a j-pouch, but i can tell you that either way is so much better than being sick! I have a perm ileo and i am so much happier. It's not that bad to have one, i know that you read alot of things and they can scare you, but just keep repeating, this is going to keep me healthy.

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 6/27/2008 2:00 PM (GMT -6)   
Sorry about the crummy news.  You're in my prayers.  The message in your signature says it all, and maybe the surgery will bring you back to all the stuff you've been missing.  Good luck and let us know how you're doing.

Ulcerative Proctitis - Diagnosed by colonoscopy January '08
Rowasa (Mesalamine) 60 ML 2X daily
Cortenama (Hydrocortisone) 100 ML 1X daily
Tried Canasa suppositories, Cortifoam, Prednisone, Colazal, Disgestive Advantage (Colitis), Fish Oil, Vitamins
 
 


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 6/27/2008 2:47 PM (GMT -6)   

Hi,

I'm sorry to hear that the dysplasia is back, but sure glad they caught it early.  I've just gone through the surgery and I'm not about 5 months living with my jpouch and I'm a new, happy, healthy man.  My whole life has changed for the better in that no UC, no worry about colon cancer, and no worry that I may need surgery!

You may want to check out my UC to Jpouch blog, it documents my two surgeries with photos and journalling, it is a really graphic but it may help take out some of the mystery of the nuts and bolts of the process.  The more you understand the process might be the less scary it is.  http://ucstory.wordpress.com

Also, I've just posted some good short videos about UC to J-Pouch, it should give you some positive information:  http://ucstory.wordpress.com/2008/06/20/video-uc-to-j-pouch/

Holler if you need anything. Oh, and I agree that you might want to visit www.jpouch.org, it is a great site that single handledly made my surgery journey feasible.

Mark


njguy69
Regular Member


Date Joined Jul 2006
Total Posts : 276
   Posted 6/27/2008 6:27 PM (GMT -6)   
You know how many times I had Dysplasia in my life? It was always a false positive every time. Dysplasia is not an exact science and if you have it, it can go away. I would keep getting retested if I were you. That's what we did. It went away and I never had that issue again.
aka. uc veteran

Asacol - four a day
6 MP - 1 tab. a day
Remicade - every eight weeks.


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/27/2008 7:59 PM (GMT -6)   
JrNYC said...
Yes i looked on there and it was helpful but then you start reading about the things that can go wrong and im afraid i'll never be able to live a "normal" life. This is so unfair.

I highlighted the key word in your statement.  Don't freak out about surgery it is going to allow you to continue to live.  Sure there will be adjustments but there were with the UC, right?  Normal, what is the definition of normal?  After you recover there will be no outward trace of any problems so if you look "normal" now then you should look "normal" when you have completely recovered.
 
As far as things going wrong, if you mean fatally I haven't seen any numbers to suggest that is even a remote possibility.  As far as the j-pouch failing and going back to an ileostomy (I am assuming you have UC and the surgery would be j-pouch to remove the entire colon) the actual numbers are less then 10% and in my opinion an ileostomy isn't all that bad when compared to UC.  I like mine so much I will probably opt to make it permanent intead of going through with the j-pouch.  Life, disease free with no worries of colon cancer, is awesome and I am not the "abnormal" one pooing in my pants in public no more, taking 35 pills a day or knowing all the restrooms in town and which ones are the best.  yeah
 
Just like everyone else has said, don't look at this as the end of the world and unfair.  Look at this as regaining your life, being able to wipe the slate clean or something along those lines.  So what if you don't have your colon, the only people that will know are the ones you tell.  If you end up with a permanent ostomy so what, again the only people who will know are the ones you tell.
 
John

Total Colectomy with End Ileostomy May 27th, 2008


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/27/2008 8:02 PM (GMT -6)   
xtremefit said...
You know how many times I had Dysplasia in my life? It was always a false positive every time. Dysplasia is not an exact science and if you have it, it can go away. I would keep getting retested if I were you. That's what we did. It went away and I never had that issue again.

I'd get a new doctor if it happened more then once.  Scaring someone like that is some serious stuff and I wouldn't take it lightly.  Just my opinion though.
 
John

Total Colectomy with End Ileostomy May 27th, 2008


njguy69
Regular Member


Date Joined Jul 2006
Total Posts : 276
   Posted 6/27/2008 8:27 PM (GMT -6)   
slim18996 said...
xtremefit said...

You know how many times I had Dysplasia in my life? It was always a false positive every time. Dysplasia is not an exact science and if you have it, it can go away. I would keep getting retested if I were you. That's what we did. It went away and I never had that issue again.

I'd get a new doctor if it happened more then once. Scaring someone like that is some serious stuff and I wouldn't take it lightly. Just my opinion though.


John


Why, it's not the DR., it's the lab which does the biopsies. I did my own research and made the decision. My Dr. suggested surgery but I refused because of what I researched. He agreed with me in what I learned that it can go away and it's not an exact science. There is no proof that it leads to cancer. Simple as that.
aka. uc veteran

Asacol - four a day
6 MP - 1 tab. a day
Remicade - every eight weeks.


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/27/2008 8:54 PM (GMT -6)   
xtremefit said...

Why, it's not the DR., it's the lab which does the biopsies. I did my own research and made the decision. My Dr. suggested surgery but I refused because of what I researched. He agreed with me in what I learned that it can go away and it's not an exact science. There is no proof that it leads to cancer. Simple as that.

The doctor is the one that reads the path report and supposedly suggested surgery so he made an assumption that it was serious enough for surgery.  You starting your initial post with "You know how many times I had Dysplasia in my life?" makes me assume this is an ongoing problem (misdiagnosed more then once) which in turn would make me find a more accurate doctor, but again it is just my opinion.
 
John

Total Colectomy with End Ileostomy May 27th, 2008


mikeg999
Regular Member


Date Joined Apr 2008
Total Posts : 62
   Posted 6/28/2008 1:45 AM (GMT -6)   
i am almost 2 weeks post total colonectomy and still in hospital. I too received the recommendation that I had exhausted my medical options and that surgery was my sole choice. For me I have suffered an emotional loss as my diseased colon was removed and while I am now accepting the reality of my decision, I am not yey at the point where I feel that the only problem with surgery was waiting.

BTW, I was not prepared to wait for for Small Intestine to take almost 11 days to wake post surgery. I am hoping to be released from hospital on Sunday.
54 yo male
First flare at age 49


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/28/2008 7:45 AM (GMT -6)   
Sorry to hear you've gotten dealt a crummy hand and that some of the decision-making process isn't entirely yours to make. I might even seek a third opinion if I weren't satisfied that the dysplasia is a definite diagnosis.

By the sound of your signature, though, it seems you're also ready to move on. If I may be so bold, maybe there's a silver lining.

njguy69
Regular Member


Date Joined Jul 2006
Total Posts : 276
   Posted 6/28/2008 9:37 AM (GMT -6)   
slim18996 said...
xtremefit said...


Why, it's not the DR., it's the lab which does the biopsies. I did my own research and made the decision. My Dr. suggested surgery but I refused because of what I researched. He agreed with me in what I learned that it can go away and it's not an exact science. There is no proof that it leads to cancer. Simple as that.

The doctor is the one that reads the path report and supposedly suggested surgery so he made an assumption that it was serious enough for surgery. You starting your initial post with "You know how many times I had Dysplasia in my life?" makes me assume this is an ongoing problem (misdiagnosed more then once) which in turn would make me find a more accurate doctor, but again it is just my opinion.


John


There was never a misdiagnosed. The pathology report stated low-grade dysplasia. My Dr. recommended surgery, I refused based on my knowledge. He respected my feelings and we retested in three months. In the meantime, I straightened out my diet and loaded up on strawberry's/raspeberry diet and all is well.

Another thing I want to ask the poster, do you have low-grade or high-grade? If it's low-grade, I would just keep getting retested. That's just my opinion, because it can clear up.
aka. uc veteran

Asacol - four a day
6 MP - 1 tab. a day
Remicade - every eight weeks.


checkerjane91
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 6/28/2008 9:39 AM (GMT -6)   
 
I am so sorry to hear of your biopsy reports.  I would be freaking out as well, as I am sure most people would.
 
Sorry that I don't have any words of wisdom for you.  I can just imagine what turmoil and stress this news would bring to your life, and I just wanted to let you know that I will keep you in my thoughts and prayers. 
 
Sometimes the best decisions made aren't the easiest.
 
Good luck with whatever you decide,

Beth
 
 
40 mgs of Pred
50 mgs of Imuran
3 Lialda
1 Canasa at night
 
 


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/28/2008 11:22 AM (GMT -6)   

I am sorry xtremefit it is a misunderstanding on my part.  With statements like "You know how many times I had Dysplasia in my life?" and "It was always a false positive every time" I assumed that it happened more then once and that you were claiming some sort of mess up with your report by calling it a "false positive".  Since you were actually diagnosed with low grade dysplasia then you are in essense playing Russian Roulette with it becoming cancer.  Again, it is not a risk I would be willing to take but I hope it continues to work for you.

JrNYC, I am sure that you will have no need to make a decision on Monday so take as long as you like coming to your conclusion.  Ask plenty of questions in the areas that have you the most worried.  Don't hesitate to ask a question because you think it is silly, it is your life and your body so having a complete understanding of what you are up against is not silly.  I will keep you in my prayers and continue to hope it all works out for the best.

John


Total Colectomy with End Ileostomy May 27th, 2008


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/28/2008 11:24 AM (GMT -6)   

Hi JrNYC. I'm kinda in the same boat as you, except my reason for surgery would be the failure of all meds. I'm scared too--I mean, it's surgery! Who wouldn't be scared???

If reading jpouch.org makes you more nervous, don't read it so much. Just be aware of the possible complications and not read into the details of specific people--that's what I plan on doing b/c I freak out easily and worry too much. And also, as suebear said, keep in mind that the people who post on the website are the ones having the problems. Heck, if I was in remission, I wouldn't be sitting in front of my computer. Also, on leemega's website, there is one entry that talks about deciding on surgery and there are links to the jpouch site--I found these very encouraging b/c many people said they were glad that they had surgery and wish they would have done it earlier. Jpouch has a 90% success rate and the risk of complications depends on how healthy/sick you are.

It definitely wouldn't hurt to get a second opinion. Keep us updated!


Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda


njguy69
Regular Member


Date Joined Jul 2006
Total Posts : 276
   Posted 6/28/2008 12:05 PM (GMT -6)   
No Russian Roulette at all Slim. Like I said, everything cleared up. I get an annual colonoscopy with tons of biopsies and everything is normal. So I have to assume that they were false positives. I just think it's crazy for people to rush to surgery over this especially if it's low grade. You have to understand, I'm an athlete, so I have a totally different mindset from everyone else.
aka. uc veteran

Asacol - four a day
6 MP - 1 tab. a day
Remicade - every eight weeks.


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 6/28/2008 12:10 PM (GMT -6)   
And in support of jpouch.org, I think it is good to understand the reality of the complications, but you must also be open to the reality that the majority of lives are improved with the jpouch - it is a longish recovery and some sacrifice but it is small price to pay to have your quality of life back. You know, we used jpouch.org to show us what things we could prevent, for instance:

1) We noticed some people were shocked by their stoma, or hated having it. We felt they might be fighting the inevitable in that if the stoma is there you better accept it. So, we did what we had to make the stoma familiar, interesting and a good thing b/c it brought health. Hence, part of the reason we show the stoma on the blog so clearly. The nurses told Mark that during his first bag changing lesson that they hadn't seen someone so accepting of the stoma and prepared for the process.

Point is, instead of just being scared, turn that fear into being proactive, learn what to expect (the good and the bad), and set up an unbreakable support system (especially in your family), and consider a way to change words like "scared" into "curious" - I love this quote:

"The body and the word have great importance: It is through their support that the true nature of the mind can be realized. It could be said that in a way, the body and the word are the servants of the mind" - Kaul Rinpoche

Only your mind can make this decision to surgery, your health, etc... is more positive than negative. I figure the good/bad will happen and we can't control what will happen, but we can be aware of our thoughts and it is in our thoughts that make a seemingly negative into a positive. For example, look at Chelsea in this post below, she is incredibly thrilled to have a quality of life back even though she has some "hurdles" getting there:

http://ucstory.wordpress.com/2008/06/07/another-inspirational-story/

Take care,
megan (mark's wife)
http://ucstory.wordpress.com
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