Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Surgery Opinions?


Sun, April 25, 2010 8:19 PM

Hey everyone...

Just had a few questions...first a little about myself...my name is Sal and im 26 years old...i was diagnosed with UC in my third year of pharmacy school back in 2005...things were really hard especially with all of the studying and exams...i missed out on a lot of things...like going out with friends and parties and everything else...i worked with CVS up until last year when i opened my own pharmacy...it has been great but its a lot of hours and its hard to keep up cause of the UC...i have been through asacol...steroids...enemas..foams..etc...but i feel im at the point where i really am considering surgery...im looking for any suggestions or opinions about surgery...is it worth it? how long is the recovery period? the diet? the pain? also does anyone recommend and surgeons around the NYC area? any help or advice would be greatly appreciated...also if anyone has any questions about medication feel free to test my pharmacist skills lol...thanks in advance guys...

FPO salrx
Joined Apr 25, 2010

Tue, May 18, 2010 7:05 PM

 Reply posted for breezy.

thank you breezy for the info. The best advice so far.
Since my last post we met with the surgeon. I used to be a surgical tech who worked hand and hand with surgeon's and I know first hand there are A and F students that do surgery. I know a lot of about my husbands disease and surgical terms and walked away just as confused as him. What worries me is I know nothing about this doctor and he is a Kaiser dr, so it is hard getting info on him.
He basically said that since his diseased portion of his colon is the rectum to the decending colon it does not leave many options. They are talking partial or full colectomy and for sure a colostomy or illiostomy. He said that it is contraindicated to do a j-pouch on a Chrohns patient but hey are not 100% sure he has Chrohn's. He has had two colonoscopies where he has had illeitis but said it could be 'backwash' inflammation from his disease being so active. Because they are not sure I feel we should not give up on the j-pouch, but after reading the experiences with j-pouches and incontinence I wonder if that would even be a better option.
He is getting a CAT scan to see more, and even though the Dr didn't say I read about it and they should be able to tell if he actually has cancer. He said that the biopsies that he took where random so they cannot watch them and he is worried he could already have cancer. (He said that with 8 years of disease, major family history, narrowing, and many suedopolyps he really does not have much of a choice on having surgery) What do you think? From what I have read and researched, my husband (only 37) is an unusual case and even his doctors are asking the universities. I have so many questions, I am going crazy.
On top of everything, he said one of the complications of the surgery could be nerve damage resulting in urinary incontinence and erectile disfunction. Has anyone had this complication, what is the % of this?

FPO scottswife
Joined Apr 29, 2010

Fri, April 30, 2010 11:25 AM

 Reply posted for scottswife.

Scottswife- I am sending you and Scott cyber hugs.  These are facts I know- cancer can not grow in an alkaline atmosphere.  Our bodies are created to be alkaline but due to processed foods we are more acidic.  It takes 100% committment to a STRICT diet and other things to get your body back the alkaline level needed to stop cancerous growth and development.  That being said... I would get a second, third, fourth opinion.  I would ask why the entire colon.  The colon cancer family history is concerning.  I would ask for educated guesses on what could happen and what %age chance of that outcome.  Knowledge is the answer.  I would go for the surgery if I felt 100% sure it was the best option.  He will have an ileostomy if they remove the colon.  If you decide on the surgery, please discuss the placement of the stoma.  Hopefully you have a WOCN nurse you can consult.  The placement of the stoma makes life easier with a bag if it is in the best place.  Find out how good your surgeon is with making stomas.  The WOCN can help with that.  Research LDN.  It is used with cancer and autoimmune diseases.  Talk to your doctors about it.  Good luck.  My temporary colostomy was unplanned.  I learned alot.  I am here if you have any questions.

Breezy

FPO breezy
Joined Jan 5, 2009

Thu, April 29, 2010 4:34 PM

 Reply posted for breezy.

They think my husband has Chrohns, he has a significant family history of colon cancer, and we just found out he has low grade and possible high grade displasia, narrowing, and psuedo polyps. They want to take it out, we are worried it is too late to do alternative diets.., opionions

FPO scottswife
Joined Apr 29, 2010

Wed, April 28, 2010 3:57 AM

 Reply posted for SalRX.

Sal,


I had the most wonderful surgeon at Weill Cornell Medical Center - Dr. Fabrizio Michelassi. He's Chief of Surgery there. He performed my colectomy in '07 - I was diagnosed in '06. I would recommend talking to him. He will answer anything you can ask. He gave me my life back.
Hope this helps! My best to you.

FPO creativesort
Joined Apr 28, 2010

Mon, April 26, 2010 12:00 AM

 Reply posted for SalRX.

Sal,

I have crohn's.  I am assuming you are talking J pouch or something like surgery.  I do not know about that.  I do know about temporary colostomy... Not any fun at all.

Have you tried the Specific Carb Diet or low carb eating?  Have you looked into LDN?  Probiotics helped my mother in law with her UC.  I know I would exhaust all options before surgery.

Cool on the pharmacy.  I think it is great you have opened your own pharmacy.  My sister is a tech at a CVS.  I will say no more.

Good luck!

Breezy

FPO breezy
Joined Jan 5, 2009

Related Topics

Small bowel resection
Author Image jess123
Joined Jan 9, 2022

Hi, I'm preparing to have an ileocecal resecti....

read more

Issues after complete sur...
Author Image Rolo
Joined Feb 25, 2024

Hello, I have had all 3 surgeries to complete m....

read more

Ostomy Support
Author Image JohnWalsh
Joined Dec 11, 2023

Are there wound care experts or professionals that....

read more