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I'm going to try to post this again with a different header as i didn't receive any responses on my last one....

I've had 22 partial bowel obstructions the past year, lots of time in hospital. I finally saw a surgeon who might have answers and she thinks my J pouch is failing (I've had it 20 years with very little problem until the past 19 months). She thinks it isn't capable of pushing things through anymore, it sounds to me like it's kind of "dead" for lack of better words, and this is causing obstructions in my small bowel just above it from a lack of peristalsis. I had a gastrograffin test and the gastrograffin just stopped right at my pouch inlet for like 7 hours but there was nothing physically blocking it. I can't find any info. on this anywhere so was curious if anyone else has this? She suggested I try emptying my j pouch from the bottom end  with a catheter and I know some on here do that-did it help with emptying/pain? Would enemas help or make it worse and just trap liquid in my malfunctioning pouch?

I'm going for a defecography in 2 weeks, and she said if the catheter trick doesn't work I'll need my J pouch taken out and have to have a permanent ileostomy, big surgeries..... Please help! Thanks.

Last edited by duck11
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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. 

Last edited by duck11

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. 

Last edited by duck11

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.  

Last edited by duck11

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.

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......

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. 

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.

Last edited by duck11

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 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 ❤️

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 🥰

  • 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, various folks here have written about using a catheter to empty their pouches. There’s plenty of variation, but some of them have described using a bulb syringe (essentially a turkey baster) to irrigate the pouch, squirting water in to facilitate emptying. Just inserting a catheter will only work if the pouch contents are fairly liquid. If stuff has been stuck in your pouch for a while then it’s unlikely to still be liquid. Do they even know if there is stool in your pouch?

The key diagnostic question is where things are getting hung up. I still suspect the malpositioned pouch.

Hi all. I had the discharge meeting today with my surgeon. They think the pouch needs to come out. There is no information from any scans that suggest why this is happening. The malpositioned pouch on defocography wasn’t  much of anything apparently, all the CT scans have never shown any narrowing/strictures/wall thickening and the motility and pathology tests are clear. They’ve been about as thorough as they can be I think.  They said sometimes pouches do this? They suggested we try a temporary ileostomy to see if it makes a big difference, that way I don’t lose it for nothing if it ends up not helping. They can also check for rogue adhesions etc. that may secretly be causing problems. I still wonder about that given I have endometriosis and all the scarring that comes with that. I feel Ok with this plan, it will be a long road, but with a light at the end of the tunnel. Thanks all for your support through this!

The temporary ileostomy sounds like a good way to go. I suspect it will give you immediate relief from your symptoms, and it will allow you to get back on your feet. If you like it, you might want to keep it permanently and you can keep the pouch too, so there wouldn't be any more surgery. Most of the time once the pouch is "disconnected" it stops causing trouble. Since you've already lost your colon, the ostomy surgery isn't too bad, so recovery time is fairly fast. I'm hoping this is the "miracle" you've been hoping for. One more thing. When I finally lost my pouch, I felt that I was giving up. Don't feel that way. You're not giving up. You've tried everything available, and now you're moving on with your recovery and your health and your life. Good luck.

@duck11 posted:

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?

Hmm, I don't wish to contradict your surgeon, but when I tried catheterisation my surgeon and a continence nurse both advised using a small amount of lukewarm water.

So: Place catheter. Inject smallish amount of water (20ml). Try to release through catheter. Inject a little more water if needed or if catheter clogs.

Gotta say, the catheter did not work for me in terms of emptying the pouch. It clogged up as soon as any small piece of food hit it. I ended up just using it to get the water in, holding that for a little while, then removing the catheter and releasing the water + stool into the toilet.

However, I have read quite a few posts from people who found it worked, so don't be discouraged yet. It can take a while to find a routine that works.

If there's a continence nurse or specialist available, they are pretty good for brainstorming strategies with, even if they don't know this exact technique.

Hi all,

it’s been a while since I wrote on this thread, but if anyone is still following and/or looking for help for similar issues, I thought I’d post an update.

its November, I’m 9 days post op from a laparotomy/diverting ileostomy. The year went from bad to worse. By mid year I could no longer eat solid food and have been living on liquids/Boost, and in hospital like a rotating door. I honestly don’t know how this was allowed to get to this point, but my surgery was eye opening....

Despite having every diagnostic test under the sun, CT, MRI, scopes, defocography, Sitsmark, nothing really definitive showed up so I (finally) convinced my surgeon I wanted an ileostomy. She went in and said my abdomen was a “trainwreck”. My pouch had a large twist in it, there was a piece of bowel wrapped too tightly all the way around it and another piece pinned underneath it, and soooo many adhesions she needed 5 hours to even make a dent in Lysing them. I’m 9 days post op now and still in hospital as my bowels just wont wake up which worries me as they thought pre-op I may have a motility issues, but already feel so much better getting that all out and disconnected. I may opt for a new pouch, or remove it, or just leave it, but she said I can live with my loop ostomy indefinitely and I just want to enjoy being healthy again for a while.

the moral of the story is, keep fighting. I KNEW all this time there was something very wrong going on inside me, but kept getting run over by a medical system that likes things in easy to treat boxes and definitions. I honestly think I may have died if this didn’t get taken care of soon. I hope this helps a few of you here who have posted with similar issues.

Duck, I’m very glad the source of your misery was found and corrected. You’re unlikely to have a motility issue, since that idea really came from grasping at straws. A post-op ileus is miserable (mine lasted 10 days), but they really are temporary. You’re likely to be much better very soon, and hopefully your loop ileostomy will be well-behaved. Please keep us posted!

@duck11 posted:

Hi all,

it’s been a while since I wrote on this thread, but if anyone is still following and/or looking for help for similar issues, I thought I’d post an update.

its November, I’m 9 days post op from a laparotomy/diverting ileostomy. The year went from bad to worse. By mid year I could no longer eat solid food and have been living on liquids/Boost, and in hospital like a rotating door. I honestly don’t know how this was allowed to get to this point, but my surgery was eye opening....

Despite having every diagnostic test under the sun, CT, MRI, scopes, defocography, Sitsmark, nothing really definitive showed up so I (finally) convinced my surgeon I wanted an ileostomy. She went in and said my abdomen was a “trainwreck”. My pouch had a large twist in it, there was a piece of bowel wrapped too tightly all the way around it and another piece pinned underneath it, and soooo many adhesions she needed 5 hours to even make a dent in Lysing them. I’m 9 days post op now and still in hospital as my bowels just wont wake up which worries me as they thought pre-op I may have a motility issues, but already feel so much better getting that all out and disconnected. I may opt for a new pouch, or remove it, or just leave it, but she said I can live with my loop ostomy indefinitely and I just want to enjoy being healthy again for a while.

the moral of the story is, keep fighting. I KNEW all this time there was something very wrong going on inside me, but kept getting run over by a medical system that likes things in easy to treat boxes and definitions. I honestly think I may have died if this didn’t get taken care of soon. I hope this helps a few of you here who have posted with similar issues.

I am so sorry to hear that! I hope things get better though!!! I am glad you have a loop, I think you should keep it instead of getting a new pouch- the same problem might happen again with the new pouch. I hope your ileostomy works out!

I wonder what caused that to happen to you? And I wonder why all of your problems did not show up on the tests??? I hear about that a lot actually, about having to go in and see the problem. Too bad that stuff does not show up on cat scans and such.

Keep us posted

Last edited by Lauren Of Emerald City

Duck11,

Wow, I am so glad you finally found some answers! I am so sorry for everything you have been through, but like you said, you knew something was very wrong and this is confirmation of that! Now you can focus on recovering and healing and regaining some quality of life back! Praying that your recovery goes smoothly and you feel better very soon.

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