I’m so sorry this is happening to you. I sure hope somebody answers. I feel like my pouch is malfunctioning too as I have so much trouble emptying it and obstructions. I am booked for a scope in a few weeks. Sure hope you get some answers. ❤️

i think its important to point out that published research has shown that 75% of j-pouch patients have functional pouch obstruction in other words it related to surgery and a form of LARS 

I’ve had this issue after having my pouch for 20 years. I had several surgeries to remove distended sections of bowel. I still had problems emptying and the vicious cycle started over again. I just couldn’t empty out. Then I finally had a surgeon willing to work with me and I started to use the catheter and would irrigate out my jpouch. In addition, my surgeon does Botox injections because I had a bit of narrowing down there and it helps relax the muscles. I’ve been doing this for the last 9 years. So depending on what your tests show and what your surgeon is willing to do the catheter can be a God send. Hope this helps! 

Kc1126-thank you! This is just the info. I was looking for-it sounds just like my problem. I haven’t gotten any further info. From her about the catheter-how does it work? Is it sort of like having an enema multiple times per day? I’m curious how many times per day you need to do it, and if it got rid of all your blockage-like pain.  I’m tired of being sick and in pain can u eat most things or can the catheter get plugged with roughage fiber? thanks for any info/details you can share. 

https://pouchsupport.org/my-catheter-conversion/

lots more articles available 👆🏻

Sometimes pouch prolapse gets misdiagnosed as functional pouch obstruction. The proper test to check for pouch prolapse is a defecogram. It can be reasonable to choose catheter emptying over a surgical repair, but only if the correct surgery is properly understood.

Duck11, Glad I could help a little! It's a very specific issue and you'll know more after the defecography and scope. It's not a perfect system but over the years it's become easier to use. I've figured out a routine that works for me. Now is probably not the best time to ask me because I'm having some unexplained pain...but...normally I use it between 3-6 times a day and I don't have any pain. Occasionally some gas pain but nothing terrible. It's kind of like using an enema but the catheter is a little wider. It takes some getting used to. I irrigate with water and a bulb syringe if it gets clogged. Sometime I have to take it out and irrigate it out and reinsert. Not as quick as just going to the bathroom but I've become fairly quick at it.

I should preface all of this by saying I went through a lot to get to this point. I had 2 ileostomies leading up to this. One was for a full year to give the bowel and pouch a rest as they were very distended from not being able to empty on my own. Hopefully, you're not to that point. Give the catheter a try instead of the enema. If you can insert it and get the stool out then I would think that would help with the pain. It's been a lifesaver for me. I also take Miralax everyday to keep things loose which makes using the catheter easier. Feel free to ask more questions. I know when I looked for info on this specific problem I couldn't find anything either. I wish you luck!

Winter wish the article and website is great-thank you! 
Scott- I am going for a defogram and pouch scope so hopefully that will help.

KC1126- this is very helpful-thank you so much! If my surgeon says to go ahead, I may bug you with more questions

I am just so astounded with how long it has taken anyone to figure this out. I have seen upwards of 5 colorectal surgeons the past 18 months via being admitted from the ER for bowel obstructions and they all told me it was from adhesions and sent me on my merry way once the Ng tube cleared me up. This is the first surgeon who said “hang on, something else is going on here”. I almost had a laparotomy-I was in the little blue surgery hat getting rolled to the surgery when she said ‘stop-this isn’t a mechanical obstruction’. If she hadn’t been there for a second opinion from her colleague I’d be recovering from surgery for nothing right now. I’m in a big city, so it’s not that there isn’t access to good hospitals here. Anyway, thanks all for your advice, the clouds are finally! Parting a bit from 18 months of awfulness. 

KC1126-I have one more question for you for now Did you feel generally sick and malaise all the time before they finally sorted out the pouch issue? I just feel like most days I barely have the energy to do anything more than an hour, even if the pain /nauseau aren't super bad. It's like I'm running on empty all the time. I'm assuming it's just my body's way of telling me things aren't working, and because I have little time to recover between episodes of pseudo-blockage where I lose weight and my electrolytes go wacky.  My weight has always been on the low end as it is, so losing even a few pounds puts me into a BMI of like 16. I drink a lot of Boost and gatorade and try to keep up my fluids and electrolytes, but still feel blah most of the time....thanks again.  

DUCK11--Sorry, I'm just seeing this now. I didn't feel nauseous nor was I vomiting (at lease not before my last big surgery when I wasn't able to go the bathroom hardly at all). I definitely felt malaise only because I knew something really bad was happening. When my surgeon opened me up she said she was "humbled" as she had never seen someones bowels so distended. I hadn't felt any "urge" to use the bathroom or any cramping sensations but when I'd use the bathroom almost nothing would come out. It was super stressful. Have you tried the catheter yet? It would be worth a try. If you get a lot of output then you know it will be the solution to your problem. So much better than surgery!

Hi all,

I had my defecography today-it wasn't as bad as I thought it would be. My pouch is literally laying sideways. The radiologist said it should be more vertical but it is horizontal and pulled over somewhere it shouldn't be. He said I'll need to discuss the results with my surgeon but seemed to think this was very useful information. I haven't tried the catheter yet as I have to wait for my 2 tests and follow-up with my surgeon as I don't have the equipment or quite know how to do it. Anyone else with this problem have a horizontal pouch problem? I'm guessing this positioning is why I am in so much pain all the time and having trouble with emptying....

Thanks.

I'm glad the procedure wasn't as bad as you thought it would be. Here's hoping that the results lead to a quick resolution. Hang in there.

Duck, I’m glad you’ve gotten this information. It’s not great to have a malpositioned pouch, but it’s worse to have one and not know it. If a surgical repair seems necessary you might want to consider a different surgeon.

Hi Scott,

I don't see my surgeon until the end of the month, so what exactly is a malpositioned pouch (other than the obvious), and what does it mean to me medically? More surgery, what kind? Curious why you think I need a new surgeon, this latest one has been much better than the others as at least she caught this......

Duck, I can’t tell exactly what’s wrong. I was suggesting that if a surgical repair is needed, whoever did the initial installation might not be my first choice.

ah I see. Well my pouch surgeries were 20 years ago and he's long retired, so I don't think that is a concern I think this is likely more do to with the age of the pouch as this is a new problem-it's worked fine for nearly 19 years.

That’s a different story than I was imagining, Duck. Thanks for clarifying.

I’m just writing to vent. I was suppose to have my scope so my surgeon could determine the best way forward from those and my defocography results, but now with the pandemic, all procedures have been cancelled for 2 months! I was so close to getting answers and having a healthy end in sight 😔 Has anyone else’s medical care been interrupted like this? It’s understandable why they need to do this of course, just frustrating. 

Winter Wish,

Hi, I’m still catching up on this thread so I apologize if you’ve already answered this but what is LARS? 

Duck11,

I’m so sorry your appointments got put on hold! I’m going through the same thing! It’s awful after waiting so long for answers already. I’ve asked if my upcoming appointment can be done by telemedicine and I’m waiting for someone to get back to me. I hope this is an option but I won’t be surprised if it isn’t. I don’t think clinics and hospitals were prepared for this sort of thing. I hope everyone stays healthy while we wait this out! 

@duck11 posted:

I’m just writing to vent. I was suppose to have my scope so my surgeon could determine the best way forward from those and my defocography results, but now with the pandemic, all procedures have been cancelled for 2 months! I was so close to getting answers and having a healthy end in sight 😔 Has anyone else’s medical care been interrupted like this? It’s understandable why they need to do this of course, just frustrating. 

Hi Duck, I had a defecography test postponed from March but my doctor's office just rescheduled for tomorrow (May 8). Just wondering if you have any advice for me. My issue is also difficulty emptying--and thus frequency and pain. I had the gastrograffin test in January which came back normal. Hoping now that the defecography test provides some answers!

Thanks!

Hi jfill21,

well, the test doesn’t hurt, so that is a positive! It’s just strange as you get injected with fluid in all your crevasses (only back end if you are a guy) and they have you do different maneuvers and sit on the commode. They take images while you push and don’t push to see how everything functions. It’s awkward but not uncomfortable and, for me at least, the staff had a way of making it feel less bizarre and embarrassing. I got a DVD of all of it and it’s kind of integrating to watch as you can see where things aren’t working once the radiologist pointed it out. 

Ive had quite a few gastrograffin tests and they seem to only show things if they catch you when you are really symptomatic. Anyway, I’m not sure what they do for anything of this yet, I’m still waiting...where I live all hospitals are still under limited services for Covid patients and emergencies only. Hope you have better luck where you are. 

I had the defecography test on Friday. For me, it was extremely uncomfortable— heck it was painful! However my anal cuff was already inflamed and “friable” as my GI stated in my January pouchoscopy report. I knew I was in trouble the night before when the mag prep burned like battery acid on exit. The digital exam prior to the test was excruciating and for whatever reason, they had to inject the barium paste twice, the second time with a longer nozzle! I was miserable. The test itself was interesting. I thought it weird to sit on such on a high toilet seat perch. I’m 6’1 and I couldn’t put my feet flat. I asked “isn’t it easier to evacuate with knees higher?” but nothing was changed. Just made evacuating slower so maybe that’s the purpose. Made me strain more. Anyway, the radiologist said everything looked good on first impression, but to of course talk with my doctor when the full report is completed. I had a 2-hour drive home afterwards and never felt the residual barium paste leaking. I was a mess when I got home - good thing I had put a pad in my underwear. The other crazy thing was 2 hours before I began the prep the night before, our septic tank backed up and the basement bathroom flooded. I was determined not to cancel the procedure since it had been postponed 6 weeks due to the virus. So I dealt with calling, waiting for, and dealing with a septic crew after drinking the first round of prep. I guess it’s funny now but I was a wreck. So stressful and what timing for the septic tank to be full that day. (sigh) The things we do, right?

Jfill21, wow, what an experience! So sorry you had such a rough time! Glad you’re through it now and hopefully feeling a little better to have that done. I had a defecography to try to figure out why I am straining to go and having episodes of intense lower right side pain ever few months. My defecography came back “normal” even though I was shaking because I had to strain so much to go. I later had an anorectal manometrey and was diagnosed with IBS and anismus. Last week I started physical therapy to try to retrain my body to relax and allow me to go. I also started using a “squatty potty” and that seems to help. No one has been able to definitively tell me what has caused the episodes of intense pain I’ve been having but after 2 years of tests and appointments I’m leaning toward the theory of functional obstructions and straining that pulls on scar tissue and/or causes abdominal muscle strain. I guess that was a really long way of saying that if your test results come back normal it doesn’t necessarily mean everything is fine. You know your body and what you’re dealing with. Keep pushing your doctor until you find an answer! 

SJAN810, the reason I had the defecography ordered was because of difficulty emptying fully—I’ll go and have to go again 20-30 minutes later. Recently I’ll sit on the toilet for 20 minutes or more and will have several rounds of gas/stool until I feel like I’m done. My frequency stayed around 10-12x in 24 hours with a lot of burning before and after. I had a manometry test a few months after takedown (this was at CC in 2017) and was prescribed pelvic floor PT by my surgeon.  I had one PT session in Cleveland — I live in Roanoke, Va. and had to quit the PT as I couldn’t find a therapist with that experience. Same thing with a local GI. I’m now going to UVA Digestive Health Center - a 2-hour drive. My new GI doc there recommended a therapist at UVA. I had 4 months of PT with biofeedback which helped a lot but I’ve never really felt “good.” I also seem to get cuffitis and/or pouchitis regularly. Tried Xifaxin which did little, but now on Cipro which has my frequency down to 7-9x. Still have the cuff pain and using Canasa which helps some. My doc thinks I may still have pelvic floor issues, hence the defecography test. Also using Visbiome 2x a day.

I’m in the hospital...again... it’s been so many times I’ve lost count and I can only laugh at how ridiculous this is. 22 or 23 admission in 2 years?  I came to a new hospital because I have other drs here treating a septic arthritis joint and thought it’d be easier to be in the same place. Anyway, my colorectal surgeon I was dealing with is at another hospital, but because of the pandemic she hasn’t been able to finish her assessment because they can’t do scopes etc right now. The surgeons at this hospital said they might be able to help me sooner (even if it means taking out my pouch for good). I don’t want to lose continence, but I just can’t be sick like this anymore-it’s been nearly 2 years. My little boy who is 20 months is learning to talk and now says “ mommy sick” 😕as part of his first words. I haven’t even been able to try the irrigation yet as my surgeon at the other hospital  said she had to do a scope first to fully recommend next steps.  I guess I’m just so annoyed being left in limbo like this for months on end and ending up in hospital again because of it. I get there is a pandemic, but it doesn’t seem right just leaving patients to fend for themselves in the meantime. Not sure what I’m looking for in this post, just needed to vent to people who get it. It is really taking a tole on my mental health.

I'm so sorry to hear you're back in the hospital. What an ordeal you've been through. I admire that you're a fighter.  It might be time to consider a permanent ileostomy, if your doctor thinks that is medically appropriate. I love mine, and it resolved ALL my pouch issues. My life was a mess, and now I can live my life again. I'm myself again and I'm so thankful.

I know it's difficult. All the best to you.  

duck11, so sorry you're having such a hard time, and during a pandemic no less. It is so hard to feel like you have to fend for yourself when dealing with such difficult health issues. Hang in there. I hope you can get the help you need soon.

David W, my doctor has mentioned the possibility of a permanent ileostomy too. I'm wondering if you had the 3 surgeries for your j-pouch (colectomy with ileostomy, j-pouch creation with ileostomy and ileostomy takedown). If so, did you have any issues with your 2nd ileostomy during the 3 part series of surgeries? My first one was great, my 2nd one leaked horribly. I'm wondering how your new ileostomy compares to the other two. I'm worried if I went to a permanent one it would be like my 2nd one where I had to change the bag every other day to keep it from leaking. Also, did they put your new ileostomy in the same spot as the old one? After all those surgeries my skin now has a crease where my stoma scar is and I'm worried that if they put a new stoma there it would leak even more because I don't have a flat surface to stick the bag on. I would love to hear about your experiences! Thanks!

Hi SJAN810. I started with a one step procedure. After one week I developed a leak and had to have emergency surgery . At that time I had the leak repaired and had a temporary ileostomy. I had the temp for four months (no ostomy issues) while everything settled down, then had the take down surgery. I was miserable for the next 12 years with my j-pouch. I met a colorectal surgeon at U.C. Irvine Medical Center who I felt comfortable with, and he did the surgery a year and a half ago. The second stoma is in a different location than the first. I've felt great since. There shouldn't be any reason for issues with leaking. Leaking issues can be addressed by a stoma nurse. I change my bag every three days and it takes about 5 minutes. I love mine.

Discuss your concerns with your doctor and see what he or she says. Also, if there is an ostomy support group in your area, you might want to visit and discuss your concerns there. Good luck.

Thanks David! It is encouraging to hear that things went well for you in case I do end up going that route.

Thanks David and Sanjay. I may reach out again to talk about ostomies and appreciate you offering that previously. They came today and also asked if I’d consider it. In the meantime they are going to arrange for a conference call between the j pouch surgeon here, mine, the general surgeon who has been facilitating and the ward dr and let me know options. I think they could see the exhaustion on my face dealing with this and are trying to finalize a resolution, pandemic or not. I’ll keep you all posted, I’m pretty sick right now. I don’t know what I’d do without this group ❤️

I'll continue sending positive thoughts your way. Good luck to you.

So some updates. I’m still here-going on over a week, but am happy they are being very thorough. They’ve checked for Chrohns, obstructions, strictures, gyne stuff, and motility. All is normal so that only leaves a pouch that just doesn’t empty anymore. It still looks like a functional issue in the pouch. They are going to teach me how to irrigate it with a catheter and hope by doing his, it will eliminate the back up of stuff and gas that is causing pain and swelling and pseudo obstructions, and likely SIBO. They put one in here for 24 hrs and it really seemed to help, so I am cautiously optimistic. If it doesn’t work, I’ll get an ileostomy and lose the pouch for good, which at this point I’m ok with if it is the cure.

thanks again all for your support through this 🥰

Duck, how have they determined that your malpositioned pouch isn’t responsible for the problem? That would be mechanical rather than functional, and it sounded like a pretty solid explanation to me.

Hi Scott, that’s a very good question I forgot to ask....I will ask them tomorrow! Thanks for the idea 

• I’ve started trying the catherization here in the hospital. It is not working at all for me. I ate 3 meals yesterday and breakfast lunch today and nothing is coming out of me at all-just a dribble. I had horrendous pain after breakfast and my blood pressure dropped to 80/50 and I felt lightheaded and cold, but stabilized with more iv fluids and some pain/nausea medication. Now this afternoon, I feel perfectly fine. It’s so strange! There is still nothing out of my pouch. I would think if the j pouch emptying is really the problem, the catheter would relieve symptoms, so maybe it’s something higher up. It’s the long weekend here so all my reg. Drs are gone till Tuesday. 
• any thoughts on getting the catheter working better?
  
  
• they also did A motility test with small bowel follow through and said it was normal. Yet, I had the same test in January and it took 4 hours For the contrast to get to my pouch and then just got stuck at the inlet. I feel the longer I’m here the more confused I get 😒
  
  
• scott: my defocography showed my pouch was only malpositioned when I was trying to use it, it’s like it moves into a position that won’t work went I try to go, then moves back. I’ll speak more to the colorectal surgeon Tuesday about it.

Duck, that’s how prolapses work, too - things are fine until you try to empty, and then they narrow or close up. OTOH, if you are using the catheter correctly then your wobbly pouch sounds like it shouldn’t be a factor, since your pouch would probably be in the correct position during catheter use. Were you able to fully insert the catheter and irrigate the pouch? If you put clear water in and get something fairly similar back then nothing much is getting to your pouch.

Thanks for the reply Scott.

they didn’t give me any water to put in it at all, just said to insert the catheter c. 2” and it should come out. I even tried a bit deeper and also tried leaving it for 30 mins. Honestly none of the nurses here are familiar with it, and the colorectal surgeon was all “it will work it you just put it in 2”. Maybe there is more to it than that? 

Duck, so sorry you’re going through all this.