Constipation with J-Pouch

I’d guess you might have a stricture rather than constipation. Is there a particular reason you think it’s constipation? Go easy on yourself, and try not to strain. This would be a good time for a pouchoscopy if we weren’t experiencing a pandemic. Maybe try to schedule one with your GI for 8-12 weeks from now, and hopefully it will seem like a good idea as that time approaches. You could also call your GI for some advice.

Thanks Scott.  After I posted, I  thought back and remembered that I was having very similar issues back in January of this year.  I made an appointment with my surgeon and that is what I had, a stricture.  He dilated the stricture and things were much better.

Until I can get in to see my surgeon, can I take Miralax safely to help keep things flowing better?  Or can an individual self dilate their stricture?  

Self-dilation is safest when it’s used to maintain an opening created “professionally.” Some folks here do it all the time, and can give you better advice than I can about how/when/whether to do it. You do have to be careful and understand the proper angle and depth of insertion, and the diameter your stricture will tolerate. It can be very painful to enlarge the opening appreciably, so anesthesia is commonly used by the pros.

It’s certainly worth preventing anything from getting trapped behind the stricture, and solid stools are not your friend. Liquid stools are probably safest, but they are unpleasant and irritating. More important than Miralax, I suspect, is to stay away from insoluble fiber or anything that might still be solid at the outlet: skins, seeds, spinach, etc. Drink plenty of water. If this gets extreme then dilation is no longer elective and you might need to get it done in spite of the inconvenient timing. Stay safe, and good luck!

I also struggle with constipation. My doctor has ruled out inflammation and strictures. After an anorectal manometry test I was diagnosed with IBS which can cause diarrhea, constipation or both (I go back and forth between the two). Occasionally I have severe abdominal pain which is probably from partial obstructions related to adhesions from surgeries. I am taking amitriptyline and MiraLAX for the IBS and constipation. I think taking these helps a bit but they haven't completely solved the problem. I will probably have to wait until we are out of this pandemic to see my doctor and find out what the plan is going forward. 

SJAN810 Thank you for your post.  I figured there was someone out there who was having the same issues that I am having.  My surgeon has no reasoning for my concerns.  Even after dilating my stricture I still have the same issues.  Miralax helps, but doesn't last all day, so to speak.  

Parrr, maybe try steel cut or slow cooking oatmeal?  Cook it using a bit more water than directed. But stay away from the instant, microwave packets which are so highly processed and pure sugar that it's not really oatmeal anymore. Also try ripe avocado. You can spread avocado on toast, or in a sandwich in place of butter or mayo. It seems to help ease things along, and it's a good fat. It has fiber, but it is soluble fiber and won't get stuck.

Winterberry posted:

Parrr, maybe try steel cut or slow cooking oatmeal?  Cook it using a bit more water than directed. But stay away from the instant, microwave packets which are so highly processed and pure sugar that it's not really oatmeal anymore. Also try ripe avocado. You can spread avocado on toast, or in a sandwich in place of butter or mayo. It seems to help ease things along, and it's a good fat. It has fiber, but it is soluble fiber and won't get stuck.

Unfortunately, anything like real oats (for oatmeal) causes constipation regardless of the amount of water used to make it.  Same with baked sweet potatoes.  But unbreaded baked fish opens the flood gates because of the oils in it.  But most foods right now cause constipation.  And regardless of the amount of water I drink helps.

I had issues with constipation early on that were not caused by a stricture.  My doctor (Dr. Shen) put me on a prescription of lactulose to help. I've been taking it for almost 10 years now and it continues to work great for me.  The best part is there are no side effects to it.  You may want to look into it.

draegs, I’m glad you aren’t having any side effects from lactulose, and that it’s been so helpful to you, but some people do get side effects. Like any medication it needs to be approached with good information and care.

I had a virtual follow up appointment with my GI doctor today. I learned that the anorectal manometry I did indicated that my anal sphincter is not relaxing as it should and that is why I have to strain so much to have a BM. I think he said this is called anismus. He said it's like trying to blow up a balloon with your mouth closed. He said a normal rectum contracts and helps you have a BM but the j-pouch cannot do this so having a BM can only happen with a combination of gravity, using your abdominal muscles and having the anal sphincter relax but that last part isn't working very well for me. He said this is related to my IBS diagnosis which is being treated with amitriptyline. Sounds like I will probably end up to taking more of that as well as more MiraLAX. He also said I could try biofeedback. My final option is to have a permanent ostomy which seems like what he is pushing me towards. The appointment felt very rushed and I only got to ask a few questions so my head is still kind of spinning, but I wanted to share this update with you guys. 

@draegs posted:

I had issues with constipation early on that were not caused by a stricture.  My doctor (Dr. Shen) put me on a prescription of lactulose to help. I've been taking it for almost 10 years now and it continues to work great for me.  The best part is there are no side effects to it.  You may want to look into it.

Shen had me try that for something a very long time ago for something, and I remember it went right through me.

Thanks everyone all your stories help me ,I'm so grateful for you all. Thanks again.

@SJAN810 posted:

I had a virtual follow up appointment with my GI doctor today. I learned that the anorectal manometry I did indicated that my anal sphincter is not relaxing as it should and that is why I have to strain so much to have a BM. I think he said this is called anismus. He said it's like trying to blow up a balloon with your mouth closed. He said a normal rectum contracts and helps you have a BM but the j-pouch cannot do this so having a BM can only happen with a combination of gravity, using your abdominal muscles and having the anal sphincter relax but that last part isn't working very well for me. He said this is related to my IBS diagnosis which is being treated with amitriptyline. Sounds like I will probably end up to taking more of that as well as more MiraLAX. He also said I could try biofeedback. My final option is to have a permanent ostomy which seems like what he is pushing me towards. The appointment felt very rushed and I only got to ask a few questions so my head is still kind of spinning, but I wanted to share this update with you guys.

Hi there!! Can I ask what you ended up doing for your problem? I have the exact same issue. Sphincter pressure is to high. I take miralax and do water enemas. It helps me get by, but it’s frustrating doing these things all the time. Plus a lot of times I still have to strain and then liquid stool is trapped. My surgeon doesn’t know what to do about it.  

Hi Kh1988,

I have been doing physical therapy with a pelvic floor specialist for close to a year to help with the pelvic floor dysfunction (anismus) that makes it hard to go to the bathroom. It has helped me learn how to go without straining. It's not a perfect fix, it's still challenging, and I also still take 2-3 doses of MiraLAX daily (divided and taken 3 times a day), but it has helped. My biggest issue is that I have episodes of severe abdominal pain on the lower right side near my main surgical scar which my healthcare team and I think is related to adhesions from surgery. I have to be SO careful not to strain when I go to the bathroom because it could trigger more pain. I also have mild to moderate pain daily in-between the severe pain and it can be triggered by almost anything: digestion, walking, bending, lifting, etc. Last year I went 8 months without an episode of severe pain which is the longest I have ever gone since it started, so even though it came back I am hopeful that the PT is helping with that too.

How are things now??? Are you better???

@SJAN810 posted:

Hi Kh1988,

I have been doing physical therapy with a pelvic floor specialist for close to a year to help with the pelvic floor dysfunction (anismus) that makes it hard to go to the bathroom. It has helped me learn how to go without straining. It's not a perfect fix, it's still challenging, and I also still take 2-3 doses of MiraLAX daily (divided and taken 3 times a day), but it has helped. My biggest issue is that I have episodes of severe abdominal pain on the lower right side near my main surgical scar which my healthcare team and I think is related to adhesions from surgery. I have to be SO careful not to strain when I go to the bathroom because it could trigger more pain. I also have mild to moderate pain daily in-between the severe pain and it can be triggered by almost anything: digestion, walking, bending, lifting, etc. Last year I went 8 months without an episode of severe pain which is the longest I have ever gone since it started, so even though it came back I am hopeful that the PT is helping with that too.

Thank you so much for replying! I’m glad you are doing better. The pain sounds awful!! I hope you get to a point when the pain goes completely away I’m pretty sure I need PT too. Do you do a capful of miralax 2-3 times a day? Or less than a capful?

@Kh1988 posted:

Thank you so much for replying! I’m glad you are doing better. The pain sounds awful!! I hope you get to a point when the pain goes completely away I’m pretty sure I need PT too. Do you do a capful of miralax 2-3 times a day? Or less than a capful?

You're welcome! I take less than a capful 3 times a day, usually 3/4 of a cap each time, sometimes 2/3 or even 1/2 if I've eaten less, it's not ideal because I go to the bathroom a lot, but if I don't take it then it's too hard to pass stool. I hope you feel better too!

@SJAN810 posted:

You're welcome! I take less than a capful 3 times a day, usually 3/4 of a cap each time, sometimes 2/3 or even 1/2 if I've eaten less, it's not ideal because I go to the bathroom a lot, but if I don't take it then it's too hard to pass stool. I hope you feel better too!

I may try what you do. I usually just take a full cap with my largest meal but I’m wondering if breaking it up, plus adding a little more might be better. I have the same problem! I need the miralax to go but sometimes it’s overkill and then I keep having to go and my sphincter won’t let it out,arrrghhh!!! Lol. I hope you feel better too! ❤️

@Kh1988 posted:

I may try what you do. I usually just take a full cap with my largest meal but I’m wondering if breaking it up, plus adding a little more might be better. I have the same problem! I need the miralax to go but sometimes it’s overkill and then I keep having to go and my sphincter won’t let it out,arrrghhh!!! Lol. I hope you feel better too! ❤️

It definitely takes some trial and error to get the dosing right. I highly recommend looking into a PT pelvic floor specialist ton, I have learned so much from mine about things like diaphragmatic breathing to help open up the pelvic floor when going to the bathroom and doing gentle yoga stretches that help loosen up the tight muscles to make it easier to go.

@SJAN810 posted:

It definitely takes some trial and error to get the dosing right. I highly recommend looking into a PT pelvic floor specialist ton, I have learned so much from mine about things like diaphragmatic breathing to help open up the pelvic floor when going to the bathroom and doing gentle yoga stretches that help loosen up the tight muscles to make it easier to go.

Yesss! I definitely feel like I need that. I’m going to Mayo in two weeks to see what they think about my problem. After that, I think I’ll start with the PT bc I do think it’ll help me!

Any updates on the constipation front? I’m dealing with similar issues and it’s getting frustrating. Almost 2 months post-takedown and straining has been an issue since introduction of solid foods. I’ve already had a stricture dilated about 2 weeks ago and finished a course of cipro for pouchitis. My pouchoscopy at the time of dilation did not show much inflammation but I had already been on abx for >10 days. The urgency and tenesmus improved very quickly on cipro so maybe was pouchitis that had been treated. Currently, I’m back to having tons of straining and it’s getting worse. Before I was generally able to start going upon sitting down, but couldn’t keep the stream going without pushing. My stool is often pretty thick despite a lot of water so that doesn’t help. Now I’m even having trouble starting the stream without a lot of straining and not much comes out. I feel deep anal fullness and pain in my entire backside, low back and abdomen. I think from all the straining.

I’ve tried Miralax and it helps but as mentioned above doesn’t last all day and it’s easy to overshoot. Currently doing prune juice which makes things completely watery with butt burn. I even tried solid prunes but they didn’t really work. I’ve tried citrucell a couple of times but didn’t seem to help. I feel bloated and miserable and all this straining is not healthy.

For those with anal sphincter issues, are you able to get anything out ever without straining? I don’t need to strain if it’s liquid and up until this week I was generally able to start going with just a mild push, just had trouble keeping it going. does this sound like a sphincter issue?

Also wonder if stricture has tightened up but seems too quick!? Only 2 weeks or so.

Anyone use prune juice throughout the day instead of Miralax or even combo fiber supplement and prune juice.  I’m afraid to hit the fiber hard for fear of making matters worse but maybe I should jut go for it and try taking it multiple times per day.
Thanks for reading and any recommendations for this less than common j pouch issue. And here I thought I would be in the bathroom 8x a day on Imodium.

@Pouch2021 posted:

Any updates on the constipation front? I’m dealing with similar issues and it’s getting frustrating. Almost 2 months post-takedown and straining has been an issue since introduction of solid foods. I’ve already had a stricture dilated about 2 weeks ago and finished a course of cipro for pouchitis. My pouchoscopy at the time of dilation did not show much inflammation but I had already been on abx for >10 days. The urgency and tenesmus improved very quickly on cipro so maybe was pouchitis that had been treated. Currently, I’m back to having tons of straining and it’s getting worse. Before I was generally able to start going upon sitting down, but couldn’t keep the stream going without pushing. My stool is often pretty thick despite a lot of water so that doesn’t help. Now I’m even having trouble starting the stream without a lot of straining and not much comes out. I feel deep anal fullness and pain in my entire backside, low back and abdomen. I think from all the straining.

I’ve tried Miralax and it helps but as mentioned above doesn’t last all day and it’s easy to overshoot. Currently doing prune juice which makes things completely watery with butt burn. I even tried solid prunes but they didn’t really work. I’ve tried citrucell a couple of times but didn’t seem to help. I feel bloated and miserable and all this straining is not healthy.

For those with anal sphincter issues, are you able to get anything out ever without straining? I don’t need to strain if it’s liquid and up until this week I was generally able to start going with just a mild push, just had trouble keeping it going. does this sound like a sphincter issue?

Also wonder if stricture has tightened up but seems too quick!? Only 2 weeks or so.

Anyone use prune juice throughout the day instead of Miralax or even combo fiber supplement and prune juice.  I’m afraid to hit the fiber hard for fear of making matters worse but maybe I should jut go for it and try taking it multiple times per day.
Thanks for reading and any recommendations for this less than common j pouch issue. And here I thought I would be in the bathroom 8x a day on Imodium.

Hi there!! So sorry you are still dealing with these issues, I am too unfortunately. I’ve gotten things manageable, but not ideal. I drink iced coffee in the morning and take a full sized dose of miralax with my largest meal of the day-usually dinner. I drink tons of water a day. I always have to push to go to the bathroom. The hardest part is getting the “stream” started. I don’t allow myself to push too hard though. If I know my pouch is full but moderate pushing isn’t working, then that’s when I do a tap water enema and it always works. I hate doing the enema but I’ve gotten fast at it and it keeps me from over straining. So sometimes just the miralax is enough to help me go with moderate pushing, but other times I have to do the water enema. I’ve been diagnosed with anismus as well and am just starting PT/biofeedback. I’ll have my first session this Friday. I’m not expecting anything miraculous, but if I could just get to the point where I don’t need enemas, I’ll be happy. I do also battle stomach aches and bad gas pains. I never ever pass gas unless I’m going to the bathroom. It’s very uncomfortable and I think that’s why I get cramps and bloating. I am also considering starting self dilation. I’m prone to getting strictures. Probably bc I have to make my stool so liquidity to poop and I’ve been told bulkier stool is what helps keep the opening from stricturing. So that’s basically where I’m at right now! 😅

@Pouch2021 I’d suggest getting checked to see if that stricture has come back. They can be stubborn and require multiple dilations. That would be the simplest explanation for your problems.

Thanks, Scott. It’s only been 2 weeks since dilation and had no idea things could tighten up that quickly. It would explain a lot of my current issues and I’ll definitely get it checked out.

@Kh1988 posted:

Hi there!! So sorry you are still dealing with these issues, I am too unfortunately. I’ve gotten things manageable, but not ideal. I drink iced coffee in the morning and take a full sized dose of miralax with my largest meal of the day-usually dinner. I drink tons of water a day. I always have to push to go to the bathroom. The hardest part is getting the “stream” started. I don’t allow myself to push too hard though. If I know my pouch is full but moderate pushing isn’t working, then that’s when I do a tap water enema and it always works. I hate doing the enema but I’ve gotten fast at it and it keeps me from over straining. So sometimes just the miralax is enough to help me go with moderate pushing, but other times I have to do the water enema. I’ve been diagnosed with anismus as well and am just starting PT/biofeedback. I’ll have my first session this Friday. I’m not expecting anything miraculous, but if I could just get to the point where I don’t need enemas, I’ll be happy. I do also battle stomach aches and bad gas pains. I never ever pass gas unless I’m going to the bathroom. It’s very uncomfortable and I think that’s why I get cramps and bloating. I am also considering starting self dilation. I’m prone to getting strictures. Probably bc I have to make my stool so liquidity to poop and I’ve been told bulkier stool is what helps keep the opening from stricturing. So that’s basically where I’m at right now! 😅

Hi Kh1988,

Yes this all certainly a drag. Do you ever take anything before bed to allow you to clear in the AM or is this when you typically use an enema. I find I can typically go all night without getting up (one of the few positives of being constipated) but starting around 6am my gut feels bloated and painful as I like have a full pouch. But, I’m most constipated in the AM, prob from not eating/drinking all night so it’s impossible to get relief once I wake up. I need to eat breakfast with a bloated full belly and drink prune juice before I can finally go. Maybe Miralax before bed?

There are various things that can make it difficult to empty a J-pouch. Calling them all “constipation” can make it more difficult to figure out the cause and the best path forward. In folks with colons constipation is often a problem with stool that is too hard or dry, which is unusual for well-hydrated pouchers. It seems like J-pouchers who are having difficulty emptying are just as (or more) likely to have a stricture or a functional problem with relaxing the sphincter in a coordinated fashion. Solutions targeted at the actual problem will tend to work best, rather than trying to soften up stool that’s already soft enough (though that may help alleviate the immediate problem). IMO I t’s worth some real effort to identify the specific problem, when possible, rather than spending years coping with its consequences.

@Pouch2021 posted:

Hi Kh1988,

Yes this all certainly a drag. Do you ever take anything before bed to allow you to clear in the AM or is this when you typically use an enema. I find I can typically go all night without getting up (one of the few positives of being constipated) but starting around 6am my gut feels bloated and painful as I like have a full pouch. But, I’m most constipated in the AM, prob from not eating/drinking all night so it’s impossible to get relief once I wake up. I need to eat breakfast with a bloated full belly and drink prune juice before I can finally go. Maybe Miralax before bed?

I almost always do an enema right before bed, it totally clears me out. I feel good and empty after that! I always sleep through the night, never get up to empty so that’s nice. I personally don’t do miralax right before bed. I’ve tried that before but it made me wake up extra early needing to go to the bathroom. For me, when I drink miralax, I would say within 4-6 hours it has its effect so that’s why I don’t usually take it right before bed, otherwise it’ll make me wake up too early! You could certainly try the miralax before bed though. Everybody is different. It might help you go in the morning when you’re feeling bloated and feel like your jpouch is full. I would give it a try! Bc I do the enema before bed, I usually feel pretty good in the morning.

@Scott F posted:

There are various things that can make it difficult to empty a J-pouch. Calling them all “constipation” can make it more difficult to figure out the cause and the best path forward. In folks with colons constipation is often a problem with stool that is too hard or dry, which is unusual for well-hydrated pouchers. It seems like J-pouchers who are having difficulty emptying are just as (or more) likely to have a stricture or a functional problem with relaxing the sphincter in a coordinated fashion. Solutions targeted at the actual problem will tend to work best, rather than trying to soften up stool that’s already soft enough (though that may help alleviate the immediate problem). IMO I t’s worth some real effort to identify the specific problem, when possible, rather than spending years coping with its consequences.

Scott, obviously it’s best to figure out the true reason for emptying difficulties. Most pouchers don’t actually have constipation. Like you said, it’s usually a stricture or pelvic floor issue. While targeted solutions will be best in the long run, in the meantime though, it is absolutely necessary to figure out ways to help empty out. I would know. I’ve been dealing with an emptying issue for over a year now. I had to wait to get tests done, had to wait months to get into mayo to actually get a diagnosis and treatment plan. After a year of going through all that, I’m just now starting pelvic floor pt/biofeedback. The only way I got through this last year was from miralax and enemas. So yea, we know it’s important to find the reason for the emptying troubles but we must do something in the meantime to get by.

Scott, I absolutely agree. I’m going to try to systematically eliminate all mechanical and functional issues before I throw up my hands and commit to laxatives indefinitely. And I definitely would like to avoid being dependent on catheters or enemas. That’s not what I signed up for with the pouch and would likely consider going back to an end ileo as I had a good quality of life with it. I have PSC as well so at higher risk for pouchitis. If the pouchitis becomes chronic and I was abx dependent/needing biologic, I would again strongly consider the bag.

Kh1988, thanks for the tips. I think I’ll try a little Miralax at night and see how it goes. I’ve never had nighttime leakage issues or frequent waking, even when doing a bowel prep so maybe I’ll luck out!

@Pouch2021 posted:

Scott, I absolutely agree. I’m going to try to systematically eliminate all mechanical and functional issues before I throw up my hands and commit to laxatives indefinitely. And I definitely would like to avoid being dependent on catheters or enemas. That’s not what I signed up for with the pouch and would likely consider going back to an end ileo as I had a good quality of life with it. I have PSC as well so at higher risk for pouchitis. If the pouchitis becomes chronic and I was abx dependent/needing biologic, I would again strongly consider the bag.

Kh1988, thanks for the tips. I think I’ll try a little Miralax at night and see how it goes. I’ve never had nighttime leakage issues or frequent waking, even when doing a bowel prep so maybe I’ll luck out!

You’re welcome!! I think trying the nighttime miralax is a good idea esp since you don’t have problems with leakage. You could play around with the dose too. Since you already had a stricture, it’s likely that it’s tightened up again. My surgeon said some people need dilated many times in a row to keep it open. If you find out it’s not a stricture problem then pelvic floor dysfunction might be the issue. I did a defecating X-ray test and anal manometry to get my diagnosis of pelvic floor dysfunction. Some PT/biofeedback apparently is helpful. I’m starting it this week! Don’t lose hope, you’re still pretty early days from takedown. Things are messy for a lot of people early on but end up straightening out with time. Keep us posted! ☺️

I made an appointment with my CRS in 2 weeks and will ask for functional studies if it’s not the stricture. For now I’ll keep experimenting with prune juice and Miralax. The prune juice can send me from zero to burning water very easily. Still trying to figure it out.

Kh1988, can I ask if you’ve had issues with sacral/glute pain and anal heaviness from all the straining?

I’m sorry to pepper you with so many questions but it seems there aren’t a lot of folks on this forum that tend toward the backed up side of things. Thanks!

@Pouch2021 posted:

I made an appointment with my CRS in 2 weeks and will ask for functional studies if it’s not the stricture. For now I’ll keep experimenting with prune juice and Miralax. The prune juice can send me from zero to burning water very easily. Still trying to figure it out.

Kh1988, can I ask if you’ve had issues with sacral/glute pain and anal heaviness from all the straining?

I’m sorry to pepper you with so many questions but it seems there aren’t a lot of folks on this forum that tend toward the backed up side of things. Thanks!

Sounds like you have a good plan in place! I know, one of the most annoying parts is figuring out how much to take and when-when it comes to laxatives, grr! I have had times where I’ve over done it for sure and it’s not fun.

About a year ago, when my problems started and I was doing a lot of straining, I did have anal pain/heaviness. My lower back hurt. All of that. I actually caused myself a mild bladder prolapse as well from pushing so hard which was very upsetting. I’m female btw. After that happened, I started on the miralax and the enemas which helped so much. I’m terrified of making the bladder prolapse worse so I no longer allow myself to strain too hard. If I feel like I need to strain, I stop and do the enema. I do have tightness and tension, in my entire pelvic area, including anal canal, which is another reason why I need the pelvic floor PT. As of now though, the pains from straining have majorly decreased since I started using the laxatives, which is nice.

Don’t be sorry! I’m happy to help any way I can. I’m a stay at home mom, so I’m able to get on here anytime. So ask away! It’s definitely nice to connect with others that also have the same issues. Most on here have the opposite problem like you said!

@Pouch2021 posted:

Any updates on the constipation front? I’m dealing with similar issues and it’s getting frustrating. Almost 2 months post-takedown and straining has been an issue since introduction of solid foods. I’ve already had a stricture dilated about 2 weeks ago and finished a course of cipro for pouchitis. My pouchoscopy at the time of dilation did not show much inflammation but I had already been on abx for >10 days. The urgency and tenesmus improved very quickly on cipro so maybe was pouchitis that had been treated. Currently, I’m back to having tons of straining and it’s getting worse. Before I was generally able to start going upon sitting down, but couldn’t keep the stream going without pushing. My stool is often pretty thick despite a lot of water so that doesn’t help. Now I’m even having trouble starting the stream without a lot of straining and not much comes out. I feel deep anal fullness and pain in my entire backside, low back and abdomen. I think from all the straining.

I’ve tried Miralax and it helps but as mentioned above doesn’t last all day and it’s easy to overshoot. Currently doing prune juice which makes things completely watery with butt burn. I even tried solid prunes but they didn’t really work. I’ve tried citrucell a couple of times but didn’t seem to help. I feel bloated and miserable and all this straining is not healthy.

For those with anal sphincter issues, are you able to get anything out ever without straining? I don’t need to strain if it’s liquid and up until this week I was generally able to start going with just a mild push, just had trouble keeping it going. does this sound like a sphincter issue?

Also wonder if stricture has tightened up but seems too quick!? Only 2 weeks or so.

Anyone use prune juice throughout the day instead of Miralax or even combo fiber supplement and prune juice.  I’m afraid to hit the fiber hard for fear of making matters worse but maybe I should jut go for it and try taking it multiple times per day.
Thanks for reading and any recommendations for this less than common j pouch issue. And here I thought I would be in the bathroom 8x a day on Imodium.

Sorry to hear you are going through this, it can be frustrating for sure. I have had similar issues, I originally had a stricture that was dilated but then it was fine and never seemed to be the cause of the problems I had later. As time went on I was straining to go, I was having episodes of severe abdominal pain, I had tons of tests done and finally received a diagnosis of IBS (or technically IPS) and pelvic floor dysfunction. The possibility of adhesions being tied to the abdominal pain has also been discussed. I've never received a clear diagnosis explaining the exact cause of my symptoms, but after spending 3 years going to different doctors and having tests done, I feel that I've ruled out nearly everything I can at this point. For the last year I've been doing PT with a pelvic floor specialist which has helped. I also take 3/4 of a dose of MiraLAX, 3 times a day, my stool is mostly liquid or mush but it's easier to go and I rarely get butt burn (I had way more of that when I was straining to go because I think it was causing anal fissures). I'm also treating the pain with gabapentin and treating the IBS with amitriptyline. I'm able to eat a more normal diet now, often eating 30-40 g of fiber per day which I would have been terrified to do a year ago. I still have the occasional episode of severe abdominal pain but it is less often than it was. I still experience occasional difficulty when trying to go to the bathroom, but it's a lot better than it was and I don't feel the need to strain (for me it's really important that I don't since it seems to be tied to the severe abdominal pain), if I can't go I take a break and try again in a little bit, it can be frustrating for sure to go back and forth to the bathroom, but it's not as bad as it used to be. I haven't found a perfect fix, but overall I'm doing better than I was a year ago. Figuring out the right combo of things for you depending on what is causing the problem can take a lot of trial and error, hang in there, I know it's tough, it will get better.

Hi,

I've just found this post and wanted to ask about the anismus and pelvic floor issues. Did you find anything that helps by now?

My issues are very similar

@NikiasVW posted:

Hi,

I've just found this post and wanted to ask about the anismus and pelvic floor issues. Did you find anything that helps by now?

My issues are very similar

Hi @NikiasVW,

I was diagnosed with anismus and pelvic floor dysfunction in 2020, and I'm doing really well now (I'm amazed!). I did PT with a pelvic floor specialist (and exercises at home) for about 2 years. I've been taking MiraLAX the whole time, but I'm finally tapering down on that. I used to take close to 3 whole doses a day, now I'm at 1/3 dose AM, 1/3 dose Midday, 1/4 dose PM and I'm tapering one of these amounts very slightly every 3 weeks to give my body time to adjust. I'm still taking a very low dose of amitriptyline which was prescribed for IBS but now is more to help me sleep. I also still take pregabalin for the abdominal pain that is most likely related to adhesions from surgery, but I haven't had a severe pain episode in almost 2 years. I've been able to poop without any straining for over a year, which I attribute mostly to the PT. My next goal is to be able to maintain this with very little or no MiraLAX. Sorry to hear that you're dealing with this too. I hope you find the help you need so you can start to see some improvement soon.

@SJAN810 posted:

I had a virtual follow up appointment with my GI doctor today. I learned that the anorectal manometry I did indicated that my anal sphincter is not relaxing as it should and that is why I have to strain so much to have a BM. I think he said this is called anismus. He said it's like trying to blow up a balloon with your mouth closed. He said a normal rectum contracts and helps you have a BM but the j-pouch cannot do this so having a BM can only happen with a combination of gravity, using your abdominal muscles and having the anal sphincter relax but that last part isn't working very well for me. He said this is related to my IBS diagnosis which is being treated with amitriptyline. Sounds like I will probably end up to taking more of that as well as more MiraLAX. He also said I could try biofeedback. My final option is to have a permanent ostomy which seems like what he is pushing me towards. The appointment felt very rushed and I only got to ask a few questions so my head is still kind of spinning, but I wanted to share this update with you guys.

Biofeedback is very helpful. Look for a Physical Therapist who specializes in pelvic floor issues. They can help you to control your muscles.

@Petey12 posted:

Biofeedback is very helpful. Look for a Physical Therapist who specializes in pelvic floor issues. They can help you to control your muscles.

I agree, it helped me tremendously! I was diagnosed with pelvic floor dysfunction in 2020 and did PT with a pelvic floor specialist for about 2 years. It was a huge part of what helped me get better. Now I'm officially off MiraLAX with minor infrequent pain. I'm so, so grateful to be doing so much better than I was a few years ago and I hope my posts here will help someone else too.

The PT I went to had a bad delivery and had her own pelvic issues, It was when this happened she realized the doctors were not addressing it, so she specialized in it. I realized I needed a PT after visiting my gastro and she told me my muscles were not working properly.

@Petey12 Hi - how did your gastro figure out your muscles are not working properly? I do not know why (yet) but I have been struggling mightily with constipation. I am trying suppositories, warm water enemas and Miralax, but sometimes nothing works. My gastro doc is booked out many months, but I want to be as educated as possible as to what to ask her.