Doctor suggests for total colectomy....Please see the reports and suggest....

Nupur,
I'm not a doctor, so I can't tell from the reports if your father needs to have surgery. Since everyone's situation is different, I can only tell you what happened to me.

In 1999, I was diagnosed with Crohn's Disease in the colon and rectum (Crohn's is a lot like Ulcerative Colitis). The doctor said that I should have surgery. I refused and switched doctors. I was hospitalized again a year later. After a colonoscopy and a few other tests, the second doctor said that I should have surgery. I refused again and switched doctors.

Over the next six years, I was hospitalized a couple more times for dehydration and anemia from the Crohn's. I finally had to see a surgeon, because the disease had made a hole from my rectum to my right butt cheek, and a very painful abscess had formed.

The first time the surgeon looked at my rectum, she said, and this is verbatim, "We are going to have to take your colon out." I cried, and she asked me why I was crying, and I told her that I was scared. She understood and did not pressure me.

We first took care of the abscess, which involved opening it up and leaving the wound open. It had to be packed with gauze several times a day. With Crohn's, as with Ulcerative Colitis, there's a lot of diarrhea, so each time I went to the bathroom, I would have to get in the shower and clean the wound out to make sure that it did not get infected. It was exhausting, to say the least.

To make a long story short, I was hospitalized again about a month later for dehydration. When I was in the hospital, my gastroenterologist did a colonoscopy and said that my colon looked terrible. She recommended that I get a temporary ileostomy and keep it for 6 months to let my colon heal.

I refused. (Can you tell that I was not interested in having surgery?) I was getting ready to check myself out of the hospital when she and her partner and the two colorectal surgeons all visited me and told me that my colon was so badly diseased that I had to have this surgery. That's when I finally agreed to it.

Once I had the ileostomy, I started to feel better, I liked the freedom it gave me from having to go to the bathroom all the time, and I was able to sleep through the night for the first time in years. I had no idea I would like it so much.

Eight months later, my colon flared up again, and I started bleeding from the rectum. That's when I called the surgeon and told her that I was ready to have my colon removed.

That was the best decision I've ever made. I battled Crohn's for 7 years before agreeing to have my colon out, and I truly wish that I would've listened to the first or second doctor years earlier and taken their advice to have surgery.

Life with an ostomy is so much better than life with a disease. I wish you and your dad all the best as you think about this and make a decision. Just remember, the doctors deal with this disease every day, and they know what they're doing. If they recommend surgery, it's only because they want to help your father and prevent him from having further health problems, which could lead to colon or rectal cancer one day.

Good luck,
Cecilia

Hi Cecilia,Sue,

Thanks a lot for a prompt reply.

Cecilia,when I started reading ur post I really felt sorry about that..but at the end of it I realized the courage with which u have faced and fought this disease.

Glad to know that u r in sound health now.

Sue,thanks to u for giving the information.Can u also let me know that is there any website or organisation which provides online medical consultation from specialists.Since we are in India,so I would like to consult doctors abroad also to take their opinions.

Thanks again...

Nupur

 

Hi Terri,

It would be really great of you if you can get some information from your doctor's nephew.

My parents are in central India (Chattisgarh) and I am in Kolkata(West Bengal).

Travelling to any corner of India is not at all a problem for us.If we need to go to another place for checkups...its fine with us...you just try to get some information.

Many Thanks!!

Best Regards,
Nupur

honestly, i dont' understand most of those words, lol. But i can say, that due to his age, and just because he has UC puts him at a higher risk for colon cancer. Being pred dependent, which it seems he is, also is a reason for surgery, pred is a good fix, but that is some evil stuff, and after a long time, it can be very very damaging to a person.
There aren't really alot of practical problems, almost one year post surgery, i don't even think about my bag the majority of the time. You can eat pretty much everything, after a while, you have to be careful the first six weeks or so. Some people choose to stay away from seeds and nuts, which actually can't be digested, by anyone, so that's a good thing to stay away from regardless, lol. Other foods will make you gassier, but don't really cause a problem, it's just most important to chew alot, and drink alot. it's easy to empty the bag, doesn't take long at all. I timed myself one night at work, took an order, took it to the kitchen, went to the bathroom, emptied the bag, fought with the annoying toilet and was back to the front in five minutes. so not long. I can take a shower, shave my legs, wash my hair and change my bag all within 35 minutes, faster if i actually try to go fast. Usually i am just pokey, lol.
it would be better for him to have surgery now, while he is not having serious troubles, instead of waiting until it gets really bad and going then

Napur,

Yes, I believe you can get a consult with the Cleveland Clinic online. The CC is one of the best hospitals in the US for colorectal and GI issues.

Sue

Hi Terri,

First of all many thanks to you for your kind gesture.

Our physician has only adviced for a total removal of colon with an external bag.I dont know whether we call it a colectomy or colostomy.

Just one more info:my dad is also has diabetes and High B.P since last 15 yrs.Currently he is on high doses of insulin because of prednisolone.

I would also request you Terri if you can give me the information of your doctor's nephew who is in India.

Thanks again Terri for your help and understanding..

Best Regards,

Nupur

Nupur

Okay, so they're looking at a colostomy then. How old is your dad if you don't mind me asking - actually, the doctor wanted to know. I gave him the information yesterday, but I'm not sure if he had a chance to look at it. He sees about 60 people a day. Interestingly enough, I found out that the nephew is now back in the U.S. looking for a hospital to do his residency at. I'll be helping him in his search, so I'll mention your dad's case to him. He will be coming back to India in the near future. The doctor's niece is also a doctor in New York, and she's very bright with a lot of connections in the U.S. as well as India.

Nupur

 

I spoke with the doctor's nephew today and he read the original information about your dad's case. He does agree with the doctor's in India that he needs surgery.

Nupur

I think he told me which surgery, but now I can't remember what he said. I think he said a proctocolectomy and permanant ileostomy but I'm not sure. His accent is a lot heavier than his uncles and I hate having him repeat stuff to me. He's a real nice person, so I'll just ask him to write it down. I working on a project with him, so we're together during the day anyways.

Napur

Sorry it took me so long to get back to you. The doctor's nephew hasn't been here for a couple of days, but he's here today.

He said that your dad will need a pancolectomy with ileoanal anastomosis. This will most likely be a two-part surgery because of the fissues. The second part of the surgery would be 6-8 weeks later. He also said that the sooner you get this done, the better.

Actually, removal of the colon would would decrease the chance since there wouldn't be a colon anymore. I know that people with Crohn's have an increased risk of colon cancer. I'm assuming it could be the same for people with UC, but I'm not absolutely sure. I wish your dad the best with his surgery and recovery.