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

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Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/9/2008 6:29 AM (GMT -6)   
Hi All,

My father had symptoms of UC in the year 2002 and was diognised as confirmed patient of UC in the year 2004 and there after remissance and
relapses were going off and on and was put on following medicine.

Mesacol tab 400mg, mesacol enema, entofoam enema, Budez cr,and
prednisolone tab starting with the dose of 40mg reducing 5 mg per week.
Uptil now he had undergone coloscopy 4 times and polypectomy
once in the year 2006.Biopsy were also taken 4 times which were normal.

He underwent another colonoscopy in January 2008.The impression was acute ulcerative colitis with psuedopolyposis.Our doctor had doubts about dysplasia so he suggested to go and have a checkup at AIG Hyderabad,India.

The reports of colonoscopy and biposies at AIG are:


Rectum:Granular Mucosa with multiple psuedopolyposis and superficial ulceration in the rectum and sigmoid.NBI shows a torturous pit pattern (Kudo Type III-IV)

Descending Colon:Peri appendicular area shows flat honey comb pit pattern with ridging and edematous mucosa with obscured microvascular pattern.

Transverse colon:Flat honey comb pattern with ridging.

Ascending colon:Grossly normal with partially erythamatous mucosa.NBI shows rounded vascular pattern.


Biopsy Reports:

1.Appendicular region-Mucosal lining intact crypts of uniform sizes with regenerative changes in lining cells.Lamina proparia has mildly increased number of lymphoplasmacytes cells.

2.Transverse colon:Superficial ulcers with mild crypt distortion and cryptitis.Lamina proparia edamatous with increased number of lymphoplamacytes with nuetrophils and eosinophils.

3.Sigmoid colon:Mucosa uneven with superficial ulcers.Cryptitis,crypt abscess with globlet cell depletion.Lamina proparia has increased number of lymphoplasmacytes cells.

4.Rectum:Single bit with ulcer.Cryptitis,crypt abscess with increased number of lymphocytes and plasma cells.Crypts are distorted.


Impression:
Ulcerative Colitis(active)
More pronounced in sigmoid colon and rectum.


After going through these latest reports,our GP has suggested for a surgery.
I have always been going through UC forums and have read about extremely bad conditions and pain of UC patients.I have lots of questions here:

1.When I compare my dad's condition and symptoms with the ones who really have a acute and severe colitis,I infer that he never had more than 6-7 motions per day during flare up.He is never been hospitalized.He never had abdominal pain.Then why the doctor is suggesting us for a surgery.

2.Can anyone plz analyze these reports and let me know that is there an increased risk of cancer in my dad's case?

3.Never had such severe symptoms....(most of the time he's been on prednisolone)...then how come his UC has turned so severe..dont really know if at all it is severe to the extent of surgery.

4.Can anyone plz let me know..if at all surgery is required then.. what is the latest time by which v should go for it....3 months...6 months..or an year??


Please help........

I wud really appreciate replies....

Hope you all understand the ignorant state v are undergoing....

Regards,
Nupur

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/9/2008 7:45 AM (GMT -6)   
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
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/9/2008 8:19 AM (GMT -6)   

I don't think any of us are qualified to give medical advice.  You might want to post this at www. j-pouch.org  There is a nurse on that site who knows a great deal about colorectal issues and she might be able to interpret the medical notes for you. 

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


Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/9/2008 11:46 AM (GMT -6)   
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
 

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 3/9/2008 12:39 PM (GMT -6)   
Nupur
As others have mentioned, we're not doctors so we really can't answer your questions. I do, however, work for an Indian doctor and his nephew is in practice in India and is quite bright. What part of India are you in? I'll check and see if I can get some information for you.
Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/9/2008 10:01 PM (GMT -6)   
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

Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/9/2008 10:07 PM (GMT -6)   
Hello people,

I would also like to know about the practical problems post surgery(total colectomy).Is it really difficult to empty the bag to carry it all through your life?

Does diet also play an important role after this surgery..or we can eat anything??

I am really new to this forum so I think I am asking very basic questions..but hope you all understand these worries which are haunting our family.

Best Regards,
Nupur

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/9/2008 10:15 PM (GMT -6)   
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

Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/10/2008 7:37 AM (GMT -6)   
Hi Summerstorm,

Thanks for sharing ur experience.After talking to u all...I think that I am gaining the courage to fight this disease.

One more thing I wud like to know...

My dad is also diabetic and a patient of High B.P.

Can these two disorders cause any problem during/post surgery?

Basically how do we need to deal with with colectomy along with sugar and B.P.Can there be serious complications because of this?

Thanks once again..

Nupur

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/10/2008 8:43 AM (GMT -6)   
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
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


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 3/10/2008 1:11 PM (GMT -6)   
Napur
I talked with the doctor I work for and he said that he'll also take a look at your dad's stuff. Are they suggesting a colectomy or a colostomy? One you have a bag and one you don't.
Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/11/2008 5:02 AM (GMT -6)   

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

 

 

 

 


Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/11/2008 5:07 AM (GMT -6)   

Hi Sue,

That was a great piece of information that you have given.I am exploring the website and looks like I'll definitely get some help from there.

Thanks a lot!

Best Regards,

Nupur

 

 


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 3/11/2008 8:42 AM (GMT -6)   

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.


Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/11/2008 11:27 AM (GMT -6)   
Hi Terri,

Thanks again for forwarding my dad's case to the doctor.He is 52 yrs old.

Btw Terri can you please clarify the difference between colectomy,colostomy,ileostomy and proctocolectomy.

I am pretty much new to these medical terminologies...

Thanks..
Nupur

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 3/11/2008 5:27 PM (GMT -6)   
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.
Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/11/2008 11:26 PM (GMT -6)   
Hi Terri,

Thanks a lot to you and the doctor for sparing time out of your busy routines to look at my dad's case.

Now that it is clear that we have to go for surgery.So can you also please take his advice as to which type of surgery will be the best for him and what is the latest time by which we should have this done.

I know I am being more and more demanding...but hope you understand that.

Thanks in advance and wish you and ur family best of ur health!!!

Best Regards,
Nupur

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 3/11/2008 11:51 PM (GMT -6)   
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.
Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/12/2008 12:56 AM (GMT -6)   
Hi Terri,

That's really so generous of you.

May god bless u!!

I am looking forward for ur notes....

Thanks,
Nupur

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 3/14/2008 1:05 PM (GMT -6)   
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.
Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/15/2008 7:45 AM (GMT -6)   
Hi Terri,

No Issues for the delay..I can understand the time constraints.Infact I am very thankful to you for taking forward my dad's case to your doctor.

hmm...so finally..I think its high time now to be mentally prepared and make up our mind for the ultimate thing!!

Btw,May I ask you Terri,did the doctor talk about any risk of cancer...actually its really difficult to ask this...but I am ready to face the music!!


Again thanks a million Terri for being so helpful and generous...

Regards,
Nupur

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 3/15/2008 8:55 AM (GMT -6)   
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.
Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.

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