After 3rd step I was put on liquid diet( soup, juices, coconut water) for few weeks and then on soft diet. 

Maintaining a food diary will help you a lot. Mention time and quantity of whatever you eat. Note down the time when you have to empty the pouch and frequency of bowel movements. This will allow you to understand the average time the food remains inside your body.

Gradually you will start figuring out what works for you. I have heard people opting for low FODMAP diet. But I don't think it's relevant. I can't imagine having lunch and dinner without chappatis and rice. Avoid chillies, milk and non veg for time being. 

 

 

Maxx posted:

Guys..I am from Pune, India, have the pouch since 2014.

I went thru a 3 step surgery in Michigan. I moved back to India last year. I think there are very few J pouchers here, would like to connect.

 

Maxx

Hi..I'm also from pune..Will happy to discuss..

Dkumar posted:

Hi, Anyone from Gujarat. I need to know who is best surgeon for j pouch surgery here in Gujarat. 

Hi DKumar, it may be difficult to say who is the best surgeon for j-pouch but I can say the best place in India is TMH, Mumbai for GI surgery.  I got my j-pouch done there and my my experience has been generally very good. 

muks posted:

Hi, I am from Maharashtra, India. I have a J pouch since 15 years. I would like to have a friendly contact and meet people with j pouch.

Great to get in touch with you, Muks.  I am from Kolkata but I did most of my treatments at TMH, Mumbai nearly two-and-half year ago.

In my case it was colorectal cancer - both Colon and Rectum have been removed through "Open" operation.  I have been having a few "side effects" to deal with - frequent BM, neuropathy, anal fistula etc.  Started accepting the new "normal" in stead of expecting that I will go back to pre-operation condition.  Overall OK.

 

You had it quite long ago.  How are you doing?

Jpouch I will say is better. Recovery time varies from person to person. Largely depends on lifestyle changes you make. Cannot tell who is the best surgeon in Mumbai cause I never had experience with other surgeon except Dr. Nilesh Doctor who did an amazing job. 

Hello Everyone.. I am from Delhi, India. I had my surgery in December, 2014. All seems to be going well. The initial year is more of an adapting phase and as time progresses thing settle in and its a comfortable normal. A new normal yes but comfortable. Its been 5 years and I am yet to meet or talk to another poucher. Its good to have found this group..

 

Hi,

I am from Kolkata, India.  Its great to meet so many of J-pouchers from India through this site.

I had my chemo, radio and surgery a little over three years ... back in 2016 June.  Had my stoma reversal in Oct., 2017.  Undoubtedly, it had been tough.  Life is never the same again.  But, with the new 'normal', life moves on.

Cheers. 

Dkumar posted:

Hi, Anyone from Gujarat. I need to know who is best surgeon for j pouch surgery here in Gujarat. 

I lived in Gujarat just before my diagnosis.  However, I got most of my treatments at TMH, Mumbai.  I believe, that is the best place to get treatment in India.  They have adequate expertise in dealing with complicated situations.  Because of huge rush of patients, one might have to wait for a bit long to get his turn for consultation / treatment but doctors are extremely sensible to patient condition.  They could change priority depending of patient criticality.

Dkumar posted:

Jpouch or ileostomy, which one is better? What about the recovery time after having j pouch surgery. Best surgeon for j-pouch in Mumbai?

I had temporary stoma which I got reversed after a little over one year post my colorectal surgery.  Either way, it changes the life style.  In case you continue to have stoma, it comes with various associated issues with regard to stoma care, bathing, sleeping etc.  But one has the freedom / flexibility of outdoor movement without much hassle.

In case of J-pouch, frequent visit to toilet, anal leakage (particularly in night time), unplanned outdoor movement are some of the issues one has to deal with. 

Well an year is too soon. Its been over four years with me and trust me it gets way better with time. I feel its as good as the previous normal with time. The leaks will go away as your system gets used to it. I have not been taking any medicines with regard to the J Pouch and eat just about anything. Well the toilet visits are there but then you get used to it. I can go an entire day without a toilet visit but yes you do feel uncomfortable beyond a point and yes its more comfortable visiting a toilet in the middle of the day... so cheer up buddy its going to get way better and there will be a time when you dont feel its presence..  just be positive.. that makes a sea difference.. btw I am from Delhi.. I got my surgery from Asian Institute in Hyderabad.  what was the reason for your surgery?

 

looking forward to be in touch..

regards

I am doing fine, Aroy. I am in Cincinnati. After my third surgery last year, I did a trip from US to Jakarata and India, this summer. I never expected that I would be able to enjoy the trip. Other than the rest room brakes, I was able to enjoy the visit with my family.

As far as medication goes, I am just taking probiotics no other medication. I have been careful that I only eat fully cooked food. Fingers crossed.

Its been five years with the pouch with me. I can go for the day without using the bathroom. However, it gets uneasy by late evening as the pressure accumilates around the abdomen. well barring a few things its been a good journey so far. Well I would say its much better than ileostomy from my experience so far and relating it to ileostomy as back then one would have bag leakages and yes the skin damage and the pain. I guess we should keep this thread alive with one or more posts coming in now and then. Well having had FAP those yearly checkups do end up having you nerved up.. not much but a bit yes. How are you all fellow J Pouchers doing out there?   

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