met with the surgeon today

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 2/4/2009 7:12 PM (GMT -6)   
Hi guys and gals-
I met with the surgeon today for a consult ( Cleveland CLinic in Ft. Laud). He was personable and down to earth. He answered my questions and explained the procedure completely. I asked him if he does a 1 step j-pouch and he does not. He performs at least 2 jpouches a month and over 30 in a year. In fact, I found out that Cleveland Clinic in FLorida performs over 90 percent of the jpouches in Florida.
He knows my GI personally so that is good. In fact, he responded to my GI's email about me in one day and had me scheduled for a consult the next day.
Also, he said that once I decide to go this route, I could probably have the surgery done in a couple of months.
 
Oh well- Still taking 6MP and will see my GI in three weeks to see where we are-- probably up dosage to 150 mg....
 
Take care.... turn
Jackie, 43
Pancolitis, DX October 06

Lexapro, colazal 3x3, Synthroid, Protonix, 6MP (75 mg)
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 2/4/2009 7:39 PM (GMT -6)   
That's awesome. I was thinking of (if I decide to have surgery some day) either going there or I think the other place was called palms of pasedena in St Pete, that's closer to where I live.

Are you planning on definitely having the surgery soon or are you still debating??

Post Edited (ediekristen) : 2/4/2009 5:42:33 PM (GMT-7)


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 2/4/2009 9:22 PM (GMT -6)   

Well- I am still going to give it a month or so-- hoping for a miracle. At least I feel confident with the surgeon and I have a good feeling things would go well. I just have to think about it some more. idea


Jackie, 43
Pancolitis, DX October 06

Lexapro, Colazal 3x3, Synthroid, Protonix, 6MP (100 mg)
Severely Anemic
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/6/2009 4:35 AM (GMT -6)   
Hi Jblue. I am from India and had been suffering from UC for over 20 years. Had the J pouch three years back. Let me tell you, save your colon as long as you can, because life is not so easy after loosing this organ. You disease is in initial stages and you can definitely control it by other alternate medicines. Please check Vitamin E enema on this forum by Mr. Sheldan. I had tried it and it helps. It has cured many people. Try all other options before taking the drastic decision of going for surger. And even if you have to go for it, go for two stage surgery. It is always better because the J pouch created in the first stage has sufficient time to heal before it takes the bowel pressure. Go for the best surgeon. Cheers and good health to you.

madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 2/6/2009 4:07 PM (GMT -6)   
Good luck making such a big decision. Sorry it had to come to that.

I have a friend whose daughter has crohn's and they use the Cleveland Clinic in west Broward. She has nice things to say about the place and I hope you find great as well. I considered going, but they had to wait months for their appointment and I am not that patient.
UC diagnosed 10/05, first symptoms 1983
6mp * asacol 12/daily * rowasa pm * cortifoam am 
 Culturelle Probiotic - prilosec - metamucil capsules
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 2/6/2009 5:42 PM (GMT -6)   
Thanks... I was able to get an appointment in less than a week. My GI is friends with the surgeon, so that may have been a factor.
 
Madabs- did you eventually have surgery?
If yes, how did it go?
Jackie, 43
Pancolitis, DX October 06

Lexapro, Colazal 3x3, Synthroid, Protonix, 6MP (100 mg)
Severely Anemic
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/6/2009 11:27 PM (GMT -6)   
Hey Jblue,
I just had a total colectomy on 12/19/08. Possible future j-pouch.
I had some complications, but I feel GREAT!
I have to say it's been worth it for me b/c I was so sick. and I had tried everything!
If you do have the surgery, you will be cured. I don't suffer from u/c anymore.
It's a tough decision.
But so far, I don't regret it! Even if I keep my ileostomy. It's become my little buddy. :-)

Good Luck-if you have any other questions, the ostomy board has very good posts about what to expect pre and post surgery.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."

Post Edited (Chasblah) : 2/7/2009 2:58:34 AM (GMT-7)


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/7/2009 12:44 AM (GMT -6)   
madabs said...
Good luck making such a big decision. Sorry it had to come to that.

I have a friend whose daughter has crohn's and they use the Cleveland Clinic in west Broward. She has nice things to say about the place and I hope you find great as well. I considered going, but they had to wait months for their appointment and I am not that patient.

Hi madlabs
There is a saying "If you become sick and patient, one thing you should never loose is patience." I am sure you are in safe hands and your docs. would take proper care. Go for the best doctor, who has peformed at least a thousand successful surgeries. Talk to a few of his patients who have already undergone surgery .Cheers and good health
 

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/7/2009 1:28 AM (GMT -6)   
Either way may your final decision be the best one.
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 2/7/2009 8:44 AM (GMT -6)   

jackie - no i haven't had the surgery.  I was referring to the GI dept at Cleveland Clinic in Ft. Lauderdale which was spoken so highly of by my friend.  Thinking about it now, I guess you probably consulted with a whole different department than she did.

Take care


UC diagnosed 10/05, first symptoms 1983
6mp * asacol 12/daily * rowasa pm * cortifoam am 
 Culturelle Probiotic - prilosec - metamucil capsules
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 562
   Posted 2/7/2009 2:42 PM (GMT -6)   
Hi Jackie,

What a huge decision you have to make. As Chassity said, she has never looked back, and is now cured, good for her! I also think when making your decision you should consider the longer you are taking all the meds for your UC the higher the chances are you will suffer from side effects later on. When I was diagnosed 29 years ago, pred and salzapyrine were your options for meds. Pred. has been my miracle drug and I would have been in trouble without it, but now I am steroid dependant. All the best to you with whatever you decide.

Julia

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 2/8/2009 10:48 PM (GMT -6)   

thanks-

Yeah- Prednisone doesn't work for me anymore. I am at 20mg now but seriously it does nothing for me. The longer I am on it- well it seems to lose its effectiveness. I am afraid to go down to 15mg again, in case I get way tooo sick to function at all.

My husband and I are having some serious surgery talk; trying to make sense of this and how we will deal with my post surgical needs. He is concerned that I will still have problems after the surgery- problems with the ileostomy and jpouch. I told him that it takes a year or so to get used to the new plumbing and that surgery is not a magic pill.

 


Jackie, 43
Pancolitis, DX October 06

Lexapro, Colazal 3x3, Synthroid, Protonix, 6MP (100 mg)
Severely Anemic
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/8/2009 10:59 PM (GMT -6)   
I'm not sure it takes THAT long to get used to the plumbing. It's only been a little over a month for me, and I'm almost there.
Do your research about surgery. The more informed you are, the better you'll feel about it.
You will be cured of your dz. There can be some problems, but usually minor to what you are dealing with and the potential to deal with when you have u/c.
You don't have to rush into anything yet.
I hated pred., but I'd rather be on it than feel too horrible to function!
If there's anything I can help with, please feel free to ask. Or you can go to the ostomy forum and check out what others have to say too!
Good Luck!
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, September 23, 2018 8:25 PM (GMT -6)
There are a total of 3,005,938 posts in 329,286 threads.
View Active Threads


Who's Online
This forum has 161811 registered members. Please welcome our newest member, Clifton Winstead.
329 Guest(s), 10 Registered Member(s) are currently online.  Details
Youngguy90, SoMuchFun, HeartsinPain, M. Lowe, pombear, Hoagie, hambiscuit, Anitas, Pixie415, adubb