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
Original Post

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. ❤️

Last edited by Maxicat

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. 

Last edited by duck11

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. 

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.

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.

Last edited by duck11

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! 

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