J-pouch update! 3 yr anniversary since surgery

Hi,

Congratulations on the “great” report.

I am reluctant too use the word great.  I prefer good or very good.

it is wonderful to hear of your progress. I am 14 months post takedown and hope to post such an update as yours at some point in the future.

Question:

did you actively treat the pelvic floor dysfunction and if so how, ie, therapy or drugs or time?

eric

@New577 posted:

Hi,

Congratulations on the “great” report.

I am reluctant too use the word great.  I prefer good or very good.

it is wonderful to hear of your progress. I am 14 months post takedown and hope to post such an update as yours at some point in the future.

Question:

did you actively treat the pelvic floor dysfunction and if so how, ie, therapy or drugs or time?

eric

Thank you very much! 🥰 14 months is still pretty early on…that was around the height of my pelvic floor dysfunction issues. Do you have the same issue?

I went to pelvic floor PT for I think 6 sessions. Tried biofeedback one time. The PT didn’t necessarily do anything magical, but it did help me learn to relax my pelvic floor. Everything was tight down there, especially my rectal sphincter. I realized I walked around clenched 24/7. When I would try to empty my pouch I realized things were tightening, so I had to really focus on relaxing and it definitely helps. The biofeedback session helped me understand what true relaxing feels like! Before that, I actually thought I was relaxed but the biofeedback machine said otherwise lol. I do recommend trying PT/biofeedback. Like I said, I only did it once a week for 6 weeks. After that, I just trained myself to work on being mindful throughout the day and relax when I noticed I’m clenched and I’ve had great results. I think too, just over time…my body has gotten use to the changes and my sphincter has naturally chilled out lol. Hope that was helpful! Oh and I do not take any meds for it. I prefer my stool on the thinner side (easier for me to empty) so I drink a couple iced coffees a day and it does the job haha

Thank you so much for this update. I needed it for sure. It's been 10 weeks since my takedown and I'm still learning what I need to do.

@Kerrymareee posted:

Thank you so much for this update. I needed it for sure. It's been 10 weeks since my takedown and I'm still learning what I need to do.

Aww absolutely!! So glad it could help you ❤️ Definitely don’t get discouraged. 10 weeks is incredibly early…I remember feeling like I made a mistake those first few months (surgery was elective). So much ups and downs. Couldn’t figure out what to eat, emptying troubles, etc…but eventually my body just adapted, things calmed down and now I feel completely “normal”! These surgeries are really pretty different than other surgeries that have like a 6 wk recovery time. I’ve heard people say the  j-pouch will actually change/adapt to become more like large intestine over time…but it does take some time. Pretty amazing though! Please feel free to ask me any questions you may have, I’d be happy to help any way I can! ❤️

Kelsey

I’m trying to figure out the foods I can eat. I had my Ileostomy for two years and couldn’t eat fresh fruits and vegetables. So I was really looking forward to that. I started eating salads because my doctor said to eat as much fiber as I can. My question is do you think fresh fruits and vegetables cause problems. And do you take any Metamucil or Imodium type products? I would say my main problem is just random symptoms but burn one day leaking constantly the next so I would like to understand how my eating effects that.

@Kerrymareee posted:

I’m trying to figure out the foods I can eat. I had my Ileostomy for two years and couldn’t eat fresh fruits and vegetables. So I was really looking forward to that. I started eating salads because my doctor said to eat as much fiber as I can. My question is do you think fresh fruits and vegetables cause problems. And do you take any Metamucil or Imodium type products? I would say my main problem is just random symptoms but burn one day leaking constantly the next so I would like to understand how my eating effects that.

I totally understand what you’re talking about. Early on it seemed like every day was different. One day I could eat something and be fine and the next time it caused issues. I think that’s pretty typical in the beginning. The first few months I did take some Metamucil and Imodium but felt like it gave me stomach aches so I stopped. I found I could control things well enough with diet. I ate things like oatmeal, rice, toast with peanut butter, fresh fruit and veggies! I eat lots of salads too! Cool thing about fiber is that it has the ability to help thicken/bulk up your stool, but it also helps you have a bm if you’re feeling constipated. Bulking up your stool should help if you have leaking. I’m sure it feels scary to eat fiber now as you dealt with an ostomy for so long…I was worried too…but I’ve never had a blockage or anything like that with my j-pouch. Always make sure you’re drinking plenty of fluids too tho! At 3 years out, my jpouch has completely adapted and I eat anything except beans (make me gassy and bloated). At this point for you, everything is trial and error. A lot of people make a food diary and try to see patterns in what they’re eating. That could be helpful! Oh and I also suffered with butt burn for probably 6 months after takedown. I definitely soaked in the tub daily and used creams/Vaseline but that has also completely went away and it is very rare for me to have any burning 😊

I'm really glad to hear about the butt burn part. If that goes away I'll be very happy And I'm happy to hear I can have my salads!  I don't have anyone I can talk to about this stuff so I'm glad I found someone who can answer my questions. Thank you so VERY MUCH!

@Kerrymareee posted:

I'm really glad to hear about the butt burn part. If that goes away I'll be very happy And I'm happy to hear I can have my salads!  I don't have anyone I can talk to about this stuff so I'm glad I found someone who can answer my questions. Thank you so VERY MUCH!

You’re so welcome! Glad I can help ❤️ Yes, the butt burn definitely gets way better as your body adapts and your bathroom visits slow down. I’m a huge salad lover too so being able to eat it is a huge deal. You’ll have to keep me posted on your journey! 😊 And if you think of more questions, please feel free to ask away!

Kelsey