Hello, I was diagnosed with UC in August of 2012 and just underwent my first surgery for the j-pouch on the 8th of February. I'm only 17 so I don't know anyone around my age or even as a family friend who has had the disease or the surgery. I'm a little lost. I have an ileostomy right now, and honestly I would take that over the disease any day. But I would like to know how to manage it better. I have A LOT of gas. I've tried to add applesauce and yogurt to tone it down, but it hasn't helped much. Does anybody have any suggestions? Also, what can I expect after I'm all said and done with surgeries. I'm petrified with this new way of life, but I'm trying to deal with it the best I can. Any advice would be wonderful.
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Hi Breann
I went 8 months with an Ileostomy and was able to eat any thing I did befor but that was me I found Apple juice went right to the bag, I also found some of the things in pre done foods gave me gas like garlic or onion in sauses. I'm 2 weeks with my J-pouch pain free and I had 2 realy good days in a row I was thinking it was well befor the surgery. I BBQ steaks for supper tonight thats how good Im fealing.
good luck to you.
UC for 30 years,never, ever had any issue with it.never had a flair up in 30 years.
DX with PSC Nov 2009
DX of High Grade Dysplasia Nov 2011
TC and pouch done June, 2012
pouch hook up done Feb, 2013
I went 8 months with an Ileostomy and was able to eat any thing I did befor but that was me I found Apple juice went right to the bag, I also found some of the things in pre done foods gave me gas like garlic or onion in sauses. I'm 2 weeks with my J-pouch pain free and I had 2 realy good days in a row I was thinking it was well befor the surgery. I BBQ steaks for supper tonight thats how good Im fealing.
good luck to you.
UC for 30 years,never, ever had any issue with it.never had a flair up in 30 years.
DX with PSC Nov 2009
DX of High Grade Dysplasia Nov 2011
TC and pouch done June, 2012
pouch hook up done Feb, 2013
Breann,
Keeping a food diary can help penpoint what foods give you problems(beats relying on memory that may be foggy).
Trial and error is the best thing, as what works for one might not for another. That is where the diary can help.
Also, think long-term. Getting stuck in the day to day stuff will drive you crazy if you let it.
Keeping a food diary can help penpoint what foods give you problems(beats relying on memory that may be foggy).
Trial and error is the best thing, as what works for one might not for another. That is where the diary can help.
Also, think long-term. Getting stuck in the day to day stuff will drive you crazy if you let it.
Breann,
Did anyone tell you about eating marshmallows before you change your appliance? I had it for 11 months at the age of 25 before my takedown in December. I had cancer however, not UC. Soda, certain veggies (cabbage, broccoli), and other foods affected me. Food journal is a good idea. Maybe you can ask your doctor about Pepto, GasX, or Beano. Good luck and keep asking questions when needed.
Did anyone tell you about eating marshmallows before you change your appliance? I had it for 11 months at the age of 25 before my takedown in December. I had cancer however, not UC. Soda, certain veggies (cabbage, broccoli), and other foods affected me. Food journal is a good idea. Maybe you can ask your doctor about Pepto, GasX, or Beano. Good luck and keep asking questions when needed.
I had uc at age 23 and got my surgery at 28. You will know what to eat when you have your takedown. Everything is different with a bag on the outside because everything comes right out. But with a j pouch it will be alot different. Its much better then having uc. As time and days go by you will learn what maked you go and what not. Im sure you will be very happy once you have your j pouch. Have patients with what you have now and you will see daylight very soon.
Breann,
First of all, good for you for reaching out -- you'll find lots & lots of help here, and will learn quite a bit about what to expect post-takedown. I'd caution you about one thing: many who post here, post because they are having issues and need help. Try not to let that scare you. Many of us j-pouchers are out there living healthy, happy lives with our j-pouches.
You do have a long road ahead of you, keep reaching out for support as you need it.
Also, if you haven't found it yet, you might want to check out the forums at c3life.com. While this forum is primarily for those who already have j-pouches, that one is primarily for folks who are currently living with an ostomy. I don't know how I'd have made it through those months without that forum -- advice on what to eat, what appliances work best, tips on how to change your appliance (the marshmallow thing mentioned earlier REALLY works!), and lots of other ideas & support that will be super helpful.
I wish all the best!
Becky
First of all, good for you for reaching out -- you'll find lots & lots of help here, and will learn quite a bit about what to expect post-takedown. I'd caution you about one thing: many who post here, post because they are having issues and need help. Try not to let that scare you. Many of us j-pouchers are out there living healthy, happy lives with our j-pouches.
You do have a long road ahead of you, keep reaching out for support as you need it.
Also, if you haven't found it yet, you might want to check out the forums at c3life.com. While this forum is primarily for those who already have j-pouches, that one is primarily for folks who are currently living with an ostomy. I don't know how I'd have made it through those months without that forum -- advice on what to eat, what appliances work best, tips on how to change your appliance (the marshmallow thing mentioned earlier REALLY works!), and lots of other ideas & support that will be super helpful.
I wish all the best!
Becky
Hey Breann,
You sound a lot like I was. I was 17 when I had my first surgery due to UC. I had my colon removed and j-pouch installed but had the illeostomy for 9 months.
I will not lie to you, I hated it, like people say it's trial and error on food, but I never found anything that was great for me.
Then I had my next surgery and started using my J-Pouch, and, at first, I didn't like it either, but after a few weeks of my body getting use to it, it got better, and better, and better, and before I knew it I was living a great life back to near normal.
Now I'm 27, married to an awesome, smoking hot wife, with 2 great kids. I shoot in professional archery tourneys, play golf, work, do whatever I want. You WILL overcome all this and be a strong person because of it.
You sound a lot like I was. I was 17 when I had my first surgery due to UC. I had my colon removed and j-pouch installed but had the illeostomy for 9 months.
I will not lie to you, I hated it, like people say it's trial and error on food, but I never found anything that was great for me.
Then I had my next surgery and started using my J-Pouch, and, at first, I didn't like it either, but after a few weeks of my body getting use to it, it got better, and better, and better, and before I knew it I was living a great life back to near normal.
Now I'm 27, married to an awesome, smoking hot wife, with 2 great kids. I shoot in professional archery tourneys, play golf, work, do whatever I want. You WILL overcome all this and be a strong person because of it.
Hi Breann,
It might help for you to go to an Ostomy support group. Your hospital might have one. Hopefully you had an ostomy nurse an she/he can direct you to where and when a group meets.
It's a lot to deal with in a few months. You don't have to rush into decisions and can stay at your current stage as long as you want to unless there is some kind of rectal problem.
Welcome to the site!
It might help for you to go to an Ostomy support group. Your hospital might have one. Hopefully you had an ostomy nurse an she/he can direct you to where and when a group meets.
It's a lot to deal with in a few months. You don't have to rush into decisions and can stay at your current stage as long as you want to unless there is some kind of rectal problem.
Welcome to the site!