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Hi everyone! Just wanted to come on here and give a 3 yr update since I first got my j-pouch. Itā€™s hard to find positive stories on here so I wanted to be sure to leave a good update! Iā€™m doing great. Definitely had some bumps along the way (in the beginning) but overall Iā€™m very happy with my j-pouch. Iā€™m not on any meds, never have had pouchitis, have 3-4 bms a day, eat whatever (except beans) and can do any activities I want. My only issue is I do have some slight troubles emptying my pouch due to pelvic floor dysfunction, but honestly itā€™s gotten a lot better on itā€™s own as my body adjusts to having the pouch and itā€™s really not bothersome anymore! Thatā€™s really about it.

Hope everyone else is doing well! šŸ˜Š

Kelsey

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Hi,

Congratulations on the ā€œgreatā€ 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 ā€œgreatā€ 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! šŸ„° 14 months is still pretty early onā€¦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 didnā€™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 Iā€™m clenched and Iā€™ve had great results. I think too, just over timeā€¦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

@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 ā¤ļø Definitely donā€™t get discouraged. 10 weeks is incredibly earlyā€¦I remember feeling like I made a mistake those first few months (surgery was elective). So much ups and downs. Couldnā€™t figure out what to eat, emptying troubles, etcā€¦but eventually my body just adapted, things calmed down and now I feel completely ā€œnormalā€! These surgeries are really pretty different than other surgeries that have like a 6 wk recovery time. Iā€™ve heard people say the  j-pouch will actually change/adapt to become more like large intestine over timeā€¦but it does take some time. Pretty amazing though! Please feel free to ask me any questions you may have, Iā€™d be happy to help any way I can! ā¤ļø

Kelsey

Iā€™m trying to figure out the foods I can eat. I had my Ileostomy for two years and couldnā€™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:

Iā€™m trying to figure out the foods I can eat. I had my Ileostomy for two years and couldnā€™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 youā€™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 thatā€™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 youā€™re feeling constipated. Bulking up your stool should help if you have leaking. Iā€™m sure it feels scary to eat fiber now as you dealt with an ostomy for so longā€¦I was worried tooā€¦but Iā€™ve never had a blockage or anything like that with my j-pouch. Always make sure youā€™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 theyā€™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 šŸ˜Š

@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!

Youā€™re so welcome! Glad I can help ā¤ļø Yes, the butt burn definitely gets way better as your body adapts and your bathroom visits slow down. Iā€™m a huge salad lover too so being able to eat it is a huge deal. Youā€™ll have to keep me posted on your journey! šŸ˜Š And if you think of more questions, please feel free to ask away!

Kelsey

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