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.
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Yes, also from Mumbai, now in Michigan. I have had J Pouch since August 4, 2017
I am from Mumbai too. I had my jpouch creation and rectum removal done last week on 21st.
Hi I am from India living in USA.
I had my j pouch 2 weeks back and eager to learn and adopt the changes we need to make.
Any particular diet you follow?
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.
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 am also from Mi, had 4 surgeries, just came back from Pune yesterday
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..
Hi, Anyone from Gujarat. I need to know who is best surgeon for j pouch surgery here in Gujarat.
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.
Hello ARoy how are you faring now? How was your surgery performed, open or laparoscopic? I had open surgery in 2002 so I am not aware of the present procedure.
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 or ileostomy, which one is better? What about the recovery time after having j pouch surgery. Best surgeon for j-pouch in Mumbai?
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..
Had no clue i would get a reply this soon .. I guess with time you dont feel much .. you get so used to it.. .. when did you discover this place?
@AMANSINGH Yes...Having a support group helps a lot!
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.
Rad posted:I am from Mumbai too. I had my jpouch creation and rectum removal done last week on 21st.
Hi Rad,
Hope you are doing better. Where are you located?
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?
I am from Gujarat but lives in PA, USA. I was wondering if life with Jpouch in India is not too difficult In terms of eating steer food? Anyone of you go out and eat street food?
Well... I do, but rarely. I am not big fan of street food. But when I do I tell the guy not to add green chilly and red chilly powder.
luckily I was never fond of chillies
AmanSingh posted: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
HI Aman
Can you pls let me know who in Asian institute did your jpouch surgery and the reversal? I'm looking for expert surgeons for my 10 yr old son. I'm from chennai. Thanks.
Hello!! Hope all of you are doing well.
I don't know if I mentioned I also have arthritis related to IBD and it flares up whenever I am in stress or have anxiety. The Covid19 situation only made it worse knowing that I belong to high risk group. I also work in sector which was classified as essential service sector so had to go to work as well. But there were less cases in my town so it didn't matter much. But now that the number of new cases are increasing day by day it made me anxious to the point that I couldn't sleep at night. The arthritis has also flared up.
I would like know how you people deal with stress.
where are you from muks
I am from USA and I have medical marijuana card. That help me with pretty much stress and anxiety. I am not saying that’s the best way but it’s working for me. I have tried yoga and meditation and all but seems like it didn’t make huge difference. I would still start with yoga and meditation. Hope you feel better.
@AmanSingh posted:where are you from muks
Raigad Maharashtra
Hello, I had a two step surgery. The first one happened in 2013 and because of a complication, the second one happened in 2017. I also had bilateral AVN because of the steroids, so, had to get bilateral hip replacement. Currently battling iron deficiency and foot drop. Good to see some Indians out here.
What is a foot drop.. where are you from?
@AmanSingh posted:What is a foot drop.. where are you from?
I'm from UP. Foot drop is caused by nerve injury. It happened right after the THR surgery. I've trouble with right foot dorsiflexion.
You guys speak very beautiful English! That is super cool! I see IBD is common in India too.
@muks posted:Hello!! Hope all of you are doing well.
I don't know if I mentioned I also have arthritis related to IBD and it flares up whenever I am in stress or have anxiety. The Covid19 situation only made it worse knowing that I belong to high risk group. I also work in sector which was classified as essential service sector so had to go to work as well. But there were less cases in my town so it didn't matter much. But now that the number of new cases are increasing day by day it made me anxious to the point that I couldn't sleep at night. The arthritis has also flared up.
I would like know how you people deal with stress.
How I deal with stress personally is I accept things I cannot change and focus on stuff I can change. And keeping busy helps too, that takes my mind off stuff.
@Rad posted:I am from Mumbai too. I had my jpouch creation and rectum removal done last week on 21st.
Dear Rod,
Who did your pouch surgery? How was your experience?