I know this is really probably a question for a doctor but I’m just curious if anybody on here has any knowledge on this. My question is, does my j-pouch look too big?
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I have never seen an image of an actual pouch in a human so don't know if yours is enlarged. However, thanks for sharing this shot. It's terrific to see what it actually looks like in there!!
@roseviolet posted:I have never seen an image of an actual pouch in a human so don't know if yours is enlarged. However, thanks for sharing this shot. It's terrific to see what it actually looks like in there!!
Haha you’re welcome! It is pretty cool! 😀
I have an enlarged j-pouch (megapouch) but I don’t have access to my “before & after” scans, unfortunately.
@Kushami posted:I have an enlarged j-pouch (megapouch) but I don’t have access to my “before & after” scans, unfortunately.
No worries! 😊 does your enlarged pouch cause you problems? Do you have to get it fixed?
I thought the same about me as well, I think everything is fine.
@Former Member posted:I thought the same about me as well, I think everything is fine.
Thank you ☺️ I was just surprised at the size. Lol. I have some pelvic floor dysfunction and can go much longer without a bm than most jpouchers so I started thinking dang has my pouch grown too big bc of that? My surgeon hasn’t said anything tho so I guess I’m ok?
@Kh1988 posted:Thank you ☺️ I was just surprised at the size. Lol. I have some pelvic floor dysfunction and can go much longer without a bm than most jpouchers so I started thinking dang has my pouch grown too big bc of that? My surgeon hasn’t said anything tho so I guess I’m ok?
How many times a day do you go??? And how much do you eat??? How often do you poop???
@Former Member posted:How many times a day do you go??? And how much do you eat??? How often do you poop???
I go about 3 times. I’ve gone like 12 hrs without a bm before. Not sure why? I eat pretty normal. I know with the pelvic floor dysfunction it’s harder for me to go and I don’t always have a strong urge/feeling to go…sometimes I have to force myself to go. My stool has always been thicker than average too. I take miralax sometimes and drink tons of water. I mean, I’m not mad about it haha, I like not going all the time. Sometimes I just worry if it’s “okay”.
@Kh1988 posted:I go about 3 times. I’ve gone like 12 hrs without a bm before. Not sure why? I eat pretty normal. I know with the pelvic floor dysfunction it’s harder for me to go and I don’t always have a strong urge/feeling to go…sometimes I have to force myself to go. My stool has always been thicker than average too. I take miralax sometimes and drink tons of water. I mean, I’m not mad about it haha, I like not going all the time. Sometimes I just worry if it’s “okay”.
LUCKY!!!! I have heard of people in your situation. I heard of people that go twice a day. You are lucky since you get to sleep!!! i go close to 20 
haha
@Former Member posted:LUCKY!!!! I have heard of people in your situation. I heard of people that go twice a day. You are lucky since you get to sleep!!! i go close to 20
Oh wow! Twice a day is crazy! I’ve had days with only 2 bms before but I’m really really bloated and distended and don’t feel good at all lol. I’m sorry you go quite a bit! 😭 how long have you had your pouch for?
@Kh1988 posted:Oh wow! Twice a day is crazy! I’ve had days with only 2 bms before but I’m really really bloated and distended and don’t feel good at all lol. I’m sorry you go quite a bit! 😭 how long have you had your pouch for?
Oh, i did not know you felt that way, how much water are you drinking???
I have had my jpouch for 7 years and 1 month 
@Former Member posted:Oh, i did not know you felt that way, how much water are you drinking???
I have had my jpouch for 7 years and 1 month
I drink quite a bit! I could always do better tho lol. Oh wow 7 years! That’s awesome!!
@Kh1988 posted:I drink quite a bit! I could always do better tho lol. Oh wow 7 years! That’s awesome!!
Yeah I celebrate every anniversary!
@Kh1988 posted:No worries! 😊 does your enlarged pouch cause you problems? Do you have to get it fixed?
Sorry I never replied to this. Yes, it does cause problems. My abdomen is huge, I am very backed up all the time, and my original surgeon says the pouch has to go.
I go 10-15 times a day, and often through the night. It's been so long since the thing worked correctly, I had forgotten that this wasn't normal. Plus I get partial obstructions 5-10 times a year. And, your pouch looks little and pretty normal compared to my alien. But I realize that its causing you much trouble and I am wishing you the best!
@tulsamom posted:I go 10-15 times a day, and often through the night. It's been so long since the thing worked correctly, I had forgotten that this wasn't normal. Plus I get partial obstructions 5-10 times a year. And, your pouch looks little and pretty normal compared to my alien. But I realize that it’s causing you much trouble and I am wishing you the best!
So sorry! Hang in there. I made this post a few years ago. Had a scope done a few months ago just for a check up and she said the size was completely normal. I still only go about 3 times a day lol. But my pelvic floor dysfunction has resolved!
I'm so glad it's all working out for you!
@tulsamom posted:I'm so glad it's all working out for you!
Thank you so much! ❤️
@tulsamom posted:I go 10-15 times a day, and often through the night. It's been so long since the thing worked correctly, I had forgotten that this wasn't normal. Plus I get partial obstructions 5-10 times a year. And, your pouch looks little and pretty normal compared to my alien. But I realize that its causing you much trouble and I am wishing you the best!
5-10 bowel obstructions a year?!?!! Shit!!! That sounds terribly painful!!!
Drinking more water has helped me not get those, I am not sure if it may help you but it might. Drinking water before, during, and after every meal helps me not get clogged up, it comes out perfectly. This technique might help you too
Mine aren’t related to eating, I’m pretty sure. It’s because of the extra part flopping over and kinking. That’s what was happening about ten years ago before I got it taken care of the first time. But I think it’s so important to drink lots of water because of the dehydration issues that come from not having a colon. Having straight liquid bms sometimes drains the water faster. And I think it’s also from the pouch not working correctly.
@tulsamom posted:Mine aren’t related to eating, I’m pretty sure. It’s because of the extra part flopping over and kinking. That’s what was happening about ten years ago before I got it taken care of the first time. But I think it’s so important to drink lots of water because of the dehydration issues that come from not having a colon. Having straight liquid bms sometimes drains the water faster. And I think it’s also from the pouch not working correctly.
Oh dear!! Yeah mine are related to eating but sounds like your issue is different than mine. Do you plan on getting that kink fixed???
I’m hoping they can take the big troublesome part off like they did the last time it grew real big. That fixed it last time. The concern is blood supply, from what I understand from a surgeon that wasn’t Dr Remzi. I’m hoping he can help me out. I’ll find out in my appt. in September.
@tulsamom posted:I’m hoping they can take the big troublesome part off like they did the last time it grew real big. That fixed it last time. The concern is blood supply, from what I understand from a surgeon that wasn’t Dr Remzi. I’m hoping he can help me out. I’ll find out in my appt. in September.
Yeah blood supply is super important! I never knew or realized how important blood supply is so crucially important. A friend from my past: her j-pouch died because there was a lack of blood supply going to the pouch and it died I never realized that could happen but makes sense. Definitely have that doctor check on blood supply through and through.
Dr. Remzi is the best from what I hear, I never heard not a single thing bad about him. He has manyyy videos on Youtube as well and he specializes in failed J-pouches, so I think your in perfect hands!!
I just that you appointment is so far away . If you have time during the day, maybe call daily to try and grab a cancelled appointment so you can get in sooner. This method does not always work but it has worked a lot for me!!! Let me know how the appointment goes! I hope it goes well!
I asked to get on the cancellation list and they don’t have one because it’s rare that anyone cancels. But I made friends with the really nice guy who answers the phone and he said he’d keep an eye out for one for me. I agree with you, might as well ask. Especially if it’s a pouch redo, that will run me very close to the end of the year. Gosh I hope it’s not that… having to travel to NY twice. That a huge financial burden as well as one for the people I’d be staying with.
@tulsamom posted:I asked to get on the cancellation list and they don’t have one because it’s rare that anyone cancels. But I made friends with the really nice guy who answers the phone and he said he’d keep an eye out for one for me. I agree with you, might as well ask. Especially if it’s a pouch redo, that will run me very close to the end of the year. Gosh I hope it’s not that… having to travel to NY twice. That a huge financial burden as well as one for the people I’d be staying with.
The times that I grabbed a cancelled appointment- most if not all said they would put me on the cancellation list as well but they never called. Instead of relying on them, I called anyway and was able to grab a cancelled appointment. Since that was my experience, it might be better to call anyway just to make sure you grab it in time. They may be good at calling people back and they may not but always plan for worst, I learned that the hard way lol.
Yeah I figured that you were traveling to New York, I am sorry you have to do that. Its a shame that a lot of colorectal surgeons and gastros are not well versed in J-pouches, j-pouch surgery is close to 50 years old so its still considered new and its a rare surgery so they say. I hope we get more well versed surgeons and doctors in this area so it can be easier on the patients. You traveling to New York twice is definitely not fair to you when you are the patient.
Do you plan on doing some sight-seeing while you are there??? Maybe see Times Square New York???
I was told by the replacement surgeon here in Tulsa that they don’t do many pouches anymore because of the Biologics Available to treat ulcerative colitis. I guess that’s good news for people that don’t need to have the surgery.
Probably won’t do any sightseeing. I’d be staying with my cousins. And the last time I visited with them we stayed home and talked for eight days in a row. They are my favorite people in the world.
And good advice, I will give them a call every week, one time.
@tulsamom posted:I was told by the replacement surgeon here in Tulsa that they don’t do many pouches anymore because of the Biologics Available to treat ulcerative colitis. I guess that’s good news for people that don’t need to have the surgery.
Probably won’t do any sightseeing. I’d be staying with my cousins. And the last time I visited with them we stayed home and talked for eight days in a row. They are my favorite people in the world.
And good advice, I will give them a call every week, one time.
Oh my gosh!!! Really!!!?!?!!1 That is so unfair to the people that need the surgery, I never heard of that before. A lot of people on this forum have had biologics and the biologics ended up failing after some time. A lot of poeple described it as delaying the inevitable. Hopefully that does not happen to those people though. I was offered biologics before surgery but i refused it, I just wanted to get surgery so everything could be over lol. A lot of people said I did the right thing because who knows if biologics would have worked forever anyway and its more healthier for the body to get surgery when you are healthierish rather than being broken down after trying biologics- that is what i was told anyway.
Did you try biologics???
Oh good! I am glad you have a good support system up in New York!!! And you do not have to pay for a hotel while up there! That is excellent!!! Glad to hear all of that! That is going to come in handy when you get surgery again in New York too.
Okay perfect!!! I would recommend calling around 10am their time and one more about an hour before they close. That is typically when people call to cancel.
They didn’t have Biologics back in my day. 😂
I did take a major immuno suppressant, I can’t remember the name of it, and it gave me pancreatitis.
@tulsamom posted:They didn’t have Biologics back in my day. 😂
I did take a major immuno suppressant, I can’t remember the name of it, and it gave me pancreatitis.
Oh that makes sense lol. The first biologic came out in 98 for our disease.
And damn!!! You see, these drugs have way too many side effects!!! Its ridiculous!!! Is your pancreatitis better now???
The pancreatitis just cause a short hospital stay sometimes the year before my first surgery in 1999. Thanks for your concern!
@tulsamom posted:The pancreatitis just cause a short hospital stay sometimes the year before my first surgery in 1999. Thanks for your concern!
Oh good! Glad your okay!!! Definitely keep me updated on things. I hope you can see Dr. Remzi before September!