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Hey everyone,

So according to my doc, I have pelvic floor weakness/tight anal sphincter. Ive had my jpouch for over a year now and everything was really great until this past spring. I noticed I was having a hard time emptying. I started straining a lot. Then I noticed a bulge in my vagina. Had a bit of a stricture so my doc took care of that but it did not solve the problem. Surgeon then ordered anal manometry and defecating test. Defecating test just verified that I’m not emptying. No afferent limb or pouch prolapse seen. Manometry showed that my sphincter pressure was too high? So she sent me to PT. Didn’t do biofeedback but the physical therapist did manual massaging of sphincter and wants me to do these other exercises. Plus she had me order this pelvic wand that she wants me to use to massage the sphincter at home. Has anyone else done this? I’ve heard of self dilation but not sphincter massaging/stretching? She said that my sphincter seemed like it was relaxing ok, but that the tissue felt tight and rigid and the opening didn’t seem quite big enough. I have to take miralax daily and use water enemas often to empty my pouch. I’m so frustrated. I’m doubtful this wand thing is going to work but I’m gonna try. Has anyone else dealt with this? Oh and I did find out I have mild/moderate bladder prolapse too...prob from all the straining plus having two kids. I’m worried if I can’t stop straining, I’m gonna make this vag bulge worse!

thanks for listening 

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I am sorry to her about our suffering. Some people use catheters to empty out the pouch if it gets to problematic, I hear it works pretty good. At least you have another option in the future if you ever need that.

Would you be open to getting a permanent ileostomy if things do not work out in the future??

Are you doing better by the way???

Thanks for your reply! I’m doing ok. I just started the PT. They said it will take prob 6-8 weeks to see good results with the sphincter “massaging”. If I take the miralax every day it helps a lot! I also started taking digestive super enzymes, and strangely it seems to be helping me empty too, along with keeping my bloat waay down! When I’m having a bad day, I do use a water enema to clear me out but I may invest in the catheter instead. I think I’d do just about anything to avoid the ileostomy lol. If my jpouch didn’t work out, I’d go for the BCIR/k pouch...can’t remember if that’s what it’s called? I could live with my current situation though. It’s not ideal and frustrating at times, but it could be worse 😊

@Kh1988 posted:

Thanks for your reply! I’m doing ok. I just started the PT. They said it will take prob 6-8 weeks to see good results with the sphincter “massaging”. If I take the miralax every day it helps a lot! I also started taking digestive super enzymes, and strangely it seems to be helping me empty too, along with keeping my bloat waay down! When I’m having a bad day, I do use a water enema to clear me out but I may invest in the catheter instead. I think I’d do just about anything to avoid the ileostomy lol. If my jpouch didn’t work out, I’d go for the BCIR/k pouch...can’t remember if that’s what it’s called? I could live with my current situation though. It’s not ideal and frustrating at times, but it could be worse 😊

You are welcome! I am glad you are doing okay I am glad everything is better with the Miralax and everything else! Since everything is working now, I think the motto "if it is not broke do not fix it" fits lol. Maybe the catheter should be used if what you are doing now fails but then again it could be better with it, who knows really, I am just glad everything is working!

Yeah I believe you said the K-pouch right! I heard good things about it on here; originally I thought it would have been problematic but I heard great results about it. One person on here even told me that they had to trade in their J-pouch due to problems for a K-pouch and it worked out perfectly for him! At least you have other options.

I have issues emptying and do use water enemas way more than I would like to. I have seen one surgeon about this. She says my problem is where the pouch is connected and that I am not a redo candidate. I have a lot of inflammatory issues. I am now on Uceris - supposedly long term - as I am allergic to Canasa and cortisone suppositories quit working. I can tell you one thing, if I am told I have to have a redo or get an illeostomy, I will find the best doc out there. I am on the west coast. I hear there is a really good Fazio trained surgeon in Colorado. He will more than likely be my first choice if I need to get serious about this. For now, the Uceris seems to keep me functional. I have a new gastroenterologist and have a scope with her Nov. 4. She wants to take a good look up there and see what she can see. She comes highly recommended.

Hang in there. Find the best doctors you can find. Keep on them until you have answers.

You are welcome! I am glad you are doing okay I am glad everything is better with the Miralax and everything else! Since everything is working now, I think the motto "if it is not broke do not fix it" fits lol. Maybe the catheter should be used if what you are doing now fails but then again it could be better with it, who knows really, I am just glad everything is working!

Yeah I believe you said the K-pouch right! I heard good things about it on here; originally I thought it would have been problematic but I heard great results about it. One person on here even told me that they had to trade in their J-pouch due to problems for a K-pouch and it worked out perfectly for him! At least you have other options.

Thank you! 😊 I’ve had been thinking about the catheter, I may get one anyways bc I think it will prob be more convenient than the enema. That’s good to know about the k-pouch. Love hearing positive stories like that! Hope you are well!

@kta posted:

I have issues emptying and do use water enemas way more than I would like to. I have seen one surgeon about this. She says my problem is where the pouch is connected and that I am not a redo candidate. I have a lot of inflammatory issues. I am now on Uceris - supposedly long term - as I am allergic to Canasa and cortisone suppositories quit working. I can tell you one thing, if I am told I have to have a redo or get an illeostomy, I will find the best doc out there. I am on the west coast. I hear there is a really good Fazio trained surgeon in Colorado. He will more than likely be my first choice if I need to get serious about this. For now, the Uceris seems to keep me functional. I have a new gastroenterologist and have a scope with her Nov. 4. She wants to take a good look up there and see what she can see. She comes highly recommended.

Hang in there. Find the best doctors you can find. Keep on them until you have answers.

Thanks for your reply! I hope your appointment goes well. I agree with you...finding the best doctor is so important. If I need more surgery in the future, I’ll def go somewhere else. I like my surgeon and it seems like she did a good job but I can’t help thinking that something is being overlooked. She seems to think it’s my sphincter that is the problem, and maybe she’s right, but I do wonder if something else is going on? I guess I’ll continue with this PT for now and see what happens! You hang in there too!

@Kh1988 posted:

Thank you! 😊 I’ve had been thinking about the catheter, I may get one anyways bc I think it will prob be more convenient than the enema. That’s good to know about the k-pouch. Love hearing positive stories like that! Hope you are well!

You are soo welcome Glad to help And okay let me know how the catheter goes when you use it. And yeah, at least we have other options if the J-pouch does not work out, I am glad we have options!

I am doing well thanks! I just celebrated my birthday and my J-pouch's birthday! I am 28 and my J-pouch is 6! So two celebrations and two birthdays were great lol.

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