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I was recently had my first blockage 20 years after my J-pouch surgery! I was eating a romaine lettuce salad and had been snacking on raw carrots earlier that day. About 7pm I stopped eating bc of gas pains, took Phazyne for gas with no relief. By 9 pm I was on the floor in a fetal position in unbearable pain! My husband called E-squad. I was given Fentanyl twice in the squad and Morphine when I arrived in ER for pain. I was hospitalized for 5 days with a NG tube (Nose to stomach) put in after 3 attempts while I was AWAKE!  My Doctor would not do surgery, which I wanted to end the pain because of risk of additional adhesions developing.  He showed me on my X-ray that the blockage was not only caused by lettuce and raw carrots but scar tissue (adhesions) caused from my J-pouch surgery. My surgeon finally treated me with Contrast media down my NG tube and IV Magnesium (for some reason) which is heavy and moves slowly. They monitored the movement with x-rays every few hours until it began to open the blockage three days later. I was discharged at 5 days when the blockage was opened and I could metabolize soft solid non-fibrous foods. I was never told NOT to eat certain foods.  I know that for maybe 6 weeks prior, when I ate steak, ribs or certain vegetables, I would vomit because I felt blocked.  I have totally changed my diet and eating habits slowly. I am reading as much about others experiences as I can. I was blessed with a Charge Nurse assigned to me on the surgical floor by coincidence also having a J-pouch for about 7 years and also being hospitalized after eating a salad!  I learned so much from her! I don't want this experience to ever happen again! Has anyone else experienced blockage emergencies and been hospitalized?  Has anyone else had an experience clearing a blockage, which I have heard of??  Please share so we can all learn!  Thank you so much!  I am grateful for this sharing format!

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No, I have not but that sounds awful, I am so sorry you had to go through that! Who would have thought lettuce and carrots could do such a thing? Thank you for sharing your experience, you never know when that info could help a fellow J-poucher. I was not told that any foods were off limits either. I recently felt "stuck" and very very painful after eating raw broccoli and vowed not to do THAT again. If only it weren't such a game of trial and error :/ Hope you are on the mend and healing up <3

@Drbev603 posted:

I was recently had my first blockage 20 years after my J-pouch surgery! I was eating a romaine lettuce salad and had been snacking on raw carrots earlier that day. About 7pm I stopped eating bc of gas pains, took Phazyne for gas with no relief. By 9 pm I was on the floor in a fetal position in unbearable pain! My husband called E-squad. I was given Fentanyl twice in the squad and Morphine when I arrived in ER for pain. I was hospitalized for 5 days with a NG tube (Nose to stomach) put in after 3 attempts while I was AWAKE!  My Doctor would not do surgery, which I wanted to end the pain because of risk of additional adhesions developing.  He showed me on my X-ray that the blockage was not only caused by lettuce and raw carrots but scar tissue (adhesions) caused from my J-pouch surgery. My surgeon finally treated me with Contrast media down my NG tube and IV Magnesium (for some reason) which is heavy and moves slowly. They monitored the movement with x-rays every few hours until it began to open the blockage three days later. I was discharged at 5 days when the blockage was opened and I could metabolize soft solid non-fibrous foods. I was never told NOT to eat certain foods.  I know that for maybe 6 weeks prior, when I ate steak, ribs or certain vegetables, I would vomit because I felt blocked.  I have totally changed my diet and eating habits slowly. I am reading as much about others experiences as I can. I was blessed with a Charge Nurse assigned to me on the surgical floor by coincidence also having a J-pouch for about 7 years and also being hospitalized after eating a salad!  I learned so much from her! I don't want this experience to ever happen again! Has anyone else experienced blockage emergencies and been hospitalized?  Has anyone else had an experience clearing a blockage, which I have heard of??  Please share so we can all learn!  Thank you so much!  I am grateful for this sharing format!

I got my J pouch in 2012. Luckily, I never had a blockage that bad, but I have had a few close calls when I've eaten corn. NEVER eat corn unless you want to end up back in the hospital!

In my case, that didn't happen because I only ate a small amount and I don't think I have a problem with adhesions. I didn't realize I couldn't eat corn until I ate frozen dinners with a little bit of corn in them. I got bad stomach pains afterwards. It was the kind of thing where I felt like I needed to sit on the toilet and try to go, to get rid of the pain, but it was odd because the pain was on the right side of my abdomen, right under where the ostomy used to be. I'd sit on the toilet and push and the pain would work itself out when I'd let out some gas or a poop. I think I must have an extra narrow spot or an adhesion or something, in the area under my ostomy scar, where the intestine was sewn back together there.

It took me a while to put 2 and 2 together and realize that it was the corn that was causing it. I thought I'd be ok, if I just ate a small amount and chewed it well, but it always caused pain no matter how well I chew it. I'm convinced that if I ate more than a few spoonfulls, especially if I didn't chew it, for whatever reason, I could put myself in the hospital.

When I first had the surgery, I was warned to be careful about potentially blockage forming foods, like certain vegetables and high residue (high fiber foods.) One nurse did tell me never to eat bok choy, but that was when I had the ostomy. They seemed a lot more concerned about it when I had the ostomy because I think blockages are much more of a concern with that, normally. I think I was told to be especially careful, or even avoid raw vegetables, but I don't remember.

At first, there were a lot of foods I was afraid to eat, but over time, I tested more and more things. If I'm unsure about a certain food, I eat a very small amount and chew it very well. Chewing well is key. I still don't have the nerve to try Romaine lettuce and raw carrots, though. I do eat raw kale salads on a regular basis, though. Kale is the only green vegetable that I feel comfortable eating raw because it is very soft and breaks down easily. The mix bag I get does have red cabbage, and that white stuff that I forget what it's called too, though, and I haven't had any problems with it. But I always drown it in dressing and chew it as thoroughly as I possibly can.

I've found that I can actually eat way more foods than I thought I'd be able to. Corn is still the one huge exception, though. It seems that no matter what I do to it, no matter how well I try to mash it or puree it, corn always causes a blockage. Even when I pureed it in a blender, it still couldn't go through me. I think corn kernels must be indestructible.

It sucks too, because I really like corn. I miss eating it. I was able to eat it when I made soup by pureeing corn in a blender as finely as I possibly can, then pushing it through a sieve, but that was a huge pain and took way to long to be worth the effort. If you miss it that much, like I do, they have corn flavored candy and corn flavored Poky sticks, that I found at a Chinese grocery store.

Last edited by melissa111
@mollymeow posted:

No, I have not but that sounds awful, I am so sorry you had to go through that! Who would have thought lettuce and carrots could do such a thing? Thank you for sharing your experience, you never know when that info could help a fellow J-poucher. I was not told that any foods were off limits either. I recently felt "stuck" and very very painful after eating raw broccoli and vowed not to do THAT again. If only it weren't such a game of trial and error :/ Hope you are on the mend and healing up <3

No one ever told you not to eat certain foods? I'm so surprised. I thought not eating blockage producing foods was standard hospital discharge advice that they give to everyone who has this surgery. I was told to avoid raw vegetables and bok choy, even if it's cooked. And whatever you do, NEVER eat corn. If you're anything like me - and I'm someone who doesn't have a ton of adhesions and complications - more than a few spoonfulls will put you in the hospital. Even if I try to puree it in a blender, that doesn't even work for some reason. Corn kernels seem to never lose their shape, no matter what you do to them. No matter how well you think you've destroyed them in the blender, they seem to magically regain their shape after being eaten and will still cause blockages and pain.

@Drbev603 posted:

Thanks so much for sharing! We can all get better at this. I had mine J-pouch done so long ago, I don't think it even had a name yet. And NO additional instructions.  I know it was a rare procedure at that time.Thanks again!

When did you have it done? Surely, they must have at least known about, and told you about the blockage risk while you had the ostomy at least, no?

@melissa111 posted:

No one ever told you not to eat certain foods? I'm so surprised. I thought not eating blockage producing foods was standard hospital discharge advice that they give to everyone who has this surgery. I was told to avoid raw vegetables and bok choy, even if it's cooked. And whatever you do, NEVER eat corn. If you're anything like me - and I'm someone who doesn't have a ton of adhesions and complications - more than a few spoonfulls will put you in the hospital. Even if I try to puree it in a blender, that doesn't even work for some reason. Corn kernels seem to never lose their shape, no matter what you do to them. No matter how well you think you've destroyed them in the blender, they seem to magically regain their shape after being eaten and will still cause blockages and pain.

What I said was food “being off limits”, I had meant it as there being foods you strictly could never have ever again. The diet was strict at first but over the years I’ve been able to incorporate more and more. I’m not talking about immediately after surgery.

I was being supportive of Drbev, relating to her experience. I think it’s important on this forum to be kind and supportive of each other. For me at least, you guys are some of the only people I know that can relate. I think we can all learn from each other.

I got a blockage from drinking prune juice which sent me to the hospital. I couldn’t stop throwing up. The doctor xrayed me and put me on IV fluids. He told me if I didn’t pass it in 24 hours, he would have to operate. Thank goodness I passed it. This blockage was 5 years after having a jpouch. Today, I stillI get partial blockages, so I watch my diet carefully. Salads, raw vegetables a big no no for me. When I do eat vegetables I cook them until very soft. I find it easier to drink a vegetable/fruit juice. (Low Fiber) and  if I feel that my bowels are not up to par, I start on low residue diet for a few days with much much water and more. That helps me. I have a sluggish bowel so my GI suggest I take a warm water enema every evening to help me empty my jpouch. Also he put me on 40mgs of Nexium twice a day for belching, nausea and excessive gas. I’m actually starting to enjoy eating again, but I still have to watch what I eat. I had my Jpouch in 1995. So I hope this helps and I hope you’re doing better.

I got a blockage from drinking prune juice which sent me to the hospital. I couldn’t stop throwing up. The doctor xrayed me and put me on IV fluids. He told me if I didn’t pass it in 24 hours, he would have to operate. Thank goodness I passed it. This blockage was 5 years after having a jpouch. Today, I stillI get partial blockages, so I watch my diet carefully. Salads, raw vegetables a big no no for me. When I do eat vegetables I cook them until very soft. I find it easier to drink a vegetable/fruit juice. (Low Fiber) and  if I feel that my bowels are not up to par, I start on low residue diet for a few days with much much water and more. That helps me. I have a sluggish bowel so my GI suggest I take a warm water enema every evening to help me empty my jpouch. Also he put me on 40mgs of Nexium twice a day for belching, nausea and excessive gas. I’m actually starting to enjoy eating again, but I still have to watch what I eat. I had my Jpouch in 1995. So I hope this helps and I hope you’re doing better.

You got a blockage from drinking prune juice? Or from eating actual prunes?

My surgeon at Ohio State UMC says even if I come back with a blockage in 2 weeks they still would not operate bc the adhesions that form just add to further complications . They would only perform surgery after MANY blockages.😢 I would have preferred surgery  rather then the pain of a 4 days blockage! I'm good now! Just very tenetive in eating! 🤯🤞

@Drbev603 posted:

My surgeon at Ohio State UMC says even if I come back with a blockage in 2 weeks they still would not operate bc the adhesions that form just add to further complications . They would only perform surgery after MANY blockages.😢 I would have preferred surgery  rather then the pain of a 4 days blockage! I'm good now! Just very tenetive in eating! 🤯🤞

do you always need surgery if you have a blockage? I thought they could suck it out with a vacuum on a proctoscope, at least in some cases. That's what I imagine they did, anyway. Is that not the case?

There is a lot of fiber in there, that is my educated guess. Some jpouchers can handle lots of fiber and some cannot unfortunately. I have talked to both types of people about that. That is just my educated guess.

I could see how fiber could cause blockages in some people. But there's really that much fiber in prune juice? Is it thick? I thought it was just a thin liquid and the reason it works as a laxative is because of the sugar and passably something else that is in it.

I had my 1st blockage about 2 yrs ago while on vacation after being somewhat dehydrated from travel and eating some extremely chewy romaine lettuce- not a lot, but I should have known better. I had had my s pouch for 19 yrs, with no problems. I spent 48 hrs in hospital with NG tube. They gave me gastrograffin contrast thru tube and within an hour, things started moving. no mention of adhesions. About 3 months ago, same thing happened here at home, caught it earlier, so not as much pain, but I started vomiting. Went to hospital, no NG, but again had gastrograffin, and it worked well again -a day and a half in hospital. I’m not as sure what triggered it that time, I had had sweet and sour chicken with steamed rice, that I had eaten a ton of times over the years, but the chicken was a little overcooked, so that’s maybe what did it. Lastly, we just got back from vacation, ended up in ER again, felt it coming on again, went to ER, gave them my story, they gave me gastrograffin again, worked in an hour and a half, out in 3 hrs. Not sure why this happened, maybe dehydrated again from traveling? Had only eaten a cheese omelet and toast that day. Needless to say, I stuck to Ensure, soup, jello, and other soft items for rest of trip. No one has ever mentioned adhesions, my 1st 2 bouts, I had a CT scan and X-rays. I am going to try and get in with the surgical group that did my surgery 20 yrs ago, to see if they have any suggestions. Does anybody know if anything works as well as gastrograffin, once you have a partial blockage. Vickie

UC dx 1999. 2 step S pouch surgery 2001. I am a hospital pharmacist. My mom had UC, had traditional ileostomy for 26 yrs with no problems.

I’m sorry you experienced a blockage-I am, unfortunately…a blockage expert 😏I had 27 blockages over 2.5 years and FINALLY got surgery last November and am much better now. It was a hellish period of life, over a dozen NG tubes, gastrograffin, etc.  I had a j pouch with zero troubles for 18 years and suddenly started getting them. Before that I ate anything, even popcorn, with zero trouble.  

Anyway, heres a few things i learned in my blockage escapades: as soon as you feel that blockage feeling, switch to clear fluids only, and drink coke (seriously, if it’s a partial blockage, it can sometimes clear them). If you start feeling really nauseas or throw up, get to the ER. Heat and walking can help (which really isn’t feasible if you’re in that much pain, but it can help). Diet wise, if you start to get them more often, like a few times a year, a low residue diet might help and still allow you to get all your nutrients. It’s a pretty bland diet though, blah.



Blockages are awful, I had no idea about them twenty years ago when I got j pouch surgery, or what they can do to your life if they happen more often. I seriously think I have medical PTSD from my experience. It seems surgeons generally won’t operate for blockages unless they are going to rupture your bowel/be life threatening, or yo have a severe case like I did. I’m crossing my fingers for you that you won’t get another…!

@duck11 posted:

I’m sorry you experienced a blockage-I am, unfortunately…a blockage expert 😏I had 27 blockages over 2.5 years and FINALLY got surgery last November and am much better now. It was a hellish period of life, over a dozen NG tubes, gastrograffin, etc.  I had a j pouch with zero troubles for 18 years and suddenly started getting them. Before that I ate anything, even popcorn, with zero trouble.  

Anyway, heres a few things i learned in my blockage escapades: as soon as you feel that blockage feeling, switch to clear fluids only, and drink coke (seriously, if it’s a partial blockage, it can sometimes clear them). If you start feeling really nauseas or throw up, get to the ER. Heat and walking can help (which really isn’t feasible if you’re in that much pain, but it can help). Diet wise, if you start to get them more often, like a few times a year, a low residue diet might help and still allow you to get all your nutrients. It’s a pretty bland diet though, blah.



Blockages are awful, I had no idea about them twenty years ago when I got j pouch surgery, or what they can do to your life if they happen more often. I seriously think I have medical PTSD from my experience. It seems surgeons generally won’t operate for blockages unless they are going to rupture your bowel/be life threatening, or yo have a severe case like I did. I’m crossing my fingers for you that you won’t get another…!

Do you know why you suddenly started getting so blockages all the time when you previously never had a problem in so many years? What changed?

OMG! Duck11 your response is so helpful! I feel so bad that you had to go through all that! This was my only blockage 🙏 so far but I'm not sure that I KNOW when it is starting to reverse it! This time with the salad I felt really gassy and laid down. I tried going potty thinking that would relieve it but didn't  The blockage got worse on it's own! Within 2 hours I was in fetal position on my way 2 ER. I didn't notice any other warnings. What were your SIGNS? Was your blockage at the COLLAR? Do you know what the surgeons did to correct your problem. Thanks so much for sharing! I know you are helping alot of us!🙏❤

Last edited by Drbev603
@Drbev603 posted:

OMG! Melissa your response is so helpful! I feel so bad that you had to go through all that! This was my only blockage 🙏 so far but I'm not sure that I KNOW when it is starting to reverse it! This time with the salad I felt really gassy and laid down. I tried going potty thinking that would relieve it but didn't  The blockage got worse on it's own! Within 2 hours I was in fetal position on my way 2 ER. I didn't notice any other warnings. What were your SIGNS? Was your blockage at the COLLAR? Do you know what the surgeons did to correct your problem. Thanks so much for sharing! I know you are helping alot of us!🙏❤

Drbev603 - There's so many post on this thread, I'm starting to get confused. I've had my J pouch since 2012 and I've never actually had a blockage. Did you mean to reply to someone else, or are you responding to my post where I said I couldn't eat corn? When I did figure out that I couldn't have corn, I'd had some close calls with it, but nothing nearly serious enough to have to go to the ER.

I have had a jpouch since 2009 and never had a blockage issue that did not resolve itself until recently.   Labor Day weekend I noticed I was uncomfortable and had diarreah starting Friday that was not getting better.  I ate all weekend and then Monday everything came to a head. I made it through the night barely and then almost called an ambulance ( I should have) but ened up in the emergency room anyway.  It turned out my small intestine that attached to my pouch was pretty much completely blocked.  They have me on steriods but my GI doc is too busy for me.  I got squeezed in next week but I can tell its not right inside.  I am eating from the massive amount of prednisone but I am going contantly and the pain still comes and goes.  I noticed as of last night I am starting to bleed internally.  Getting a Remicade treatment as I writet this so hopefully that helps.   I cant even get paid medical leave until my GI sees me.   I was in the hospital for a week  within walking distance from his office and never saw him once.  Health care in this country is going down hill and I don't understand why.  Cant work, cant get help, cant get paid.  This is great.



Hopefully you are having better luck.



Pete

Last edited by PSJ

OMG! I am speechless about what you are dealing with!  That is horrible.  First of all a total blockage is life threatening and must be treated immediately! I went into ER of a major medical center and they knew exactly what to do.  My surgeon, but I saw a group bc this is a teaching hospital, said they do NOT do surgery bc the scar tissue causes more medical problems...but they put me on Fentanyl and morphine for pain and gave me xRay contrast media through my NG tube (Nose/Gastro) and an IV of magnesium sulphate? to hopefully open the blockage. (This is how they treat all J-tube blockages.) No food or water from admittance until the blockage is open which took 4 days. No steroids. Then they sent mobile  Xray every couple of hours to follow if it was working and opening the blockage.  The NG tube sucked out blood and anything produced internally. I took 4 FULL days to unblock but they were sure it would work. I was discharged on Day 5 after I could consume soft solids and process them.  This was my first blockage since my J-tube in 1991.  It was caused by eating romaine lettuce and raw carrots!! But..every time  I ate steak or beef for a month prior, I would throw up. So the blockage may have already begun.  And they were sure if was also from adhesions which they saw on the x-Ray.  I am so sorry you had to deal with this. My advice is find a doctor familiar with J-tube blockages, who really CARES and is available for you!  I'm praying that you find better medical care who can help you manage your health issues better. Take care of yourself.

Hi there! Diagnosed with UC in 1989; J-Pouch in 1992 and had first blockage immediately after the reconnection surgery.  Since then I've probably had about 10 blockages with 1/2 ending up in the hospital on an NG tube. Once I had surgery (2012) due to scar tissue from original surgery and probably my fault because I waited too long to go to ER. I know the signs and I take steps to remediate at home first, heating pads, only liquids, and drink milk of magnesia.  But if that doesn't help within 24 hours I go right to ER and tell them I need vallum/morphine and that I have a blockage.

The foods that have triggered: broccoli, hibachi vegetables, and sadly beer.  All from TOO much at once.  I've learned these lessons:

1 - everything in moderation is ok but don't eat all your kids hibachi veggies because you love them and they hate them; ditto with broccoli

2 - the sooner you go to the hospital the better the chance you can be treated with drugs and an NG versus surgery

3 - if in the hospital and the NG doesn't appear to be helping MAKE THEM do an x-ray to check placement of the tube in your stomach -- I was in so much agony for several days until they did this and then the machine was working over-time. You have to be your own patient advocate!  This is what happened after drinking a very dark hoppy beer - it was not pretty!

By now I know the signs and I am not naïve to think it won't happen again but every day, every month, every year it doesn't I am grateful. And I now drink mostly wine but occasionally I will have 1-2 beers and enjoy every sip!



 

I had my final surgery in October 2011. I have had two major total obstructions. Both were from raw vegetables and adhesions. First one was very similar to yours, no surgery but 6 days in hospital. Second, surgery that was tough to heal from it. I cannot eat any leafy vegetables.  If I eat salad it has to be iceberg lettuce because it digests easier. I’m always aware of what I eat but that doesn’t always stop these things from happening.
I have had six major surgeries so just imagine the scar tissue! Plus, I have a huge hernia! Life goes on but I would love to sit down at a huge salad bar and pig out!
By the way, I was a vegetarian when I got sick! I have learned to eat chicken and bacon! Lol  Best wishes for you!

@Drbev603 posted:

OMG! I am speechless about what you are dealing with!  That is horrible.  First of all a total blockage is life threatening and must be treated immediately! I went into ER of a major medical center and they knew exactly what to do.  My surgeon, but I saw a group bc this is a teaching hospital, said they do NOT do surgery bc the scar tissue causes more medical problems...but they put me on Fentanyl and morphine for pain and gave me xRay contrast media through my NG tube (Nose/Gastro) and an IV of magnesium sulphate? to hopefully open the blockage. (This is how they treat all J-tube blockages.) No food or water from admittance until the blockage is open which took 4 days. No steroids. Then they sent mobile  Xray every couple of hours to follow if it was working and opening the blockage.  The NG tube sucked out blood and anything produced internally. I took 4 FULL days to unblock but they were sure it would work. I was discharged on Day 5 after I could consume soft solids and process them.  This was my first blockage since my J-tube in 1991.  It was caused by eating romaine lettuce and raw carrots!! But..every time  I ate steak or beef for a month prior, I would throw up. So the blockage may have already begun.  And they were sure if was also from adhesions which they saw on the x-Ray.  I am so sorry you had to deal with this. My advice is find a doctor familiar with J-tube blockages, who really CARES and is available for you!  I'm praying that you find better medical care who can help you manage your health issues better. Take care of yourself.

I wonder if they ever take care of a blockage by suctioning it out with a endoscope, if it is close enough to your anus that they could get the scope up the where the blockage is. That's what I always imagined they'd do, but I guess they don't?

@Vergie posted:

I had my final surgery in October 2011. I have had two major total obstructions. Both were from raw vegetables and adhesions. First one was very similar to yours, no surgery but 6 days in hospital. Second, surgery that was tough to heal from it. I cannot eat any leafy vegetables.  If I eat salad it has to be iceberg lettuce because it digests easier. I’m always aware of what I eat but that doesn’t always stop these things from happening.
I have had six major surgeries so just imagine the scar tissue! Plus, I have a huge hernia! Life goes on but I would love to sit down at a huge salad bar and pig out!
By the way, I was a vegetarian when I got sick! I have learned to eat chicken and bacon! Lol  Best wishes for you!

Iceberg lettuce actually breaks down better for you than kale? I'm surprised. Kale is so soft and that and spinach are the only two salad greens I can have. I wouldn't eat any type of lettuce.

@melissa111 posted:

Do you know why you suddenly started getting so blockages all the time when you previously never had a problem in so many years? What changed?

Adhesions. My J pouch had a twist in it from adhesions, and a few loops of bowel sort of pinned underneath it, it was literally tied in knots down there so no food could pass, or at least only in dribbles.  My understanding is adhesions can develop anytime, even 20 years later. My surgeon spent 9 hours lysing them-the OR nurses nicknamed me “train wreck” as my abdomen was such a mess and the surgery was suppose to be a simple one hour diversion lol. I was also diagnosed with endometriosis a few years ago, so I do wonder if the scar tissue that can arise from that played a part.

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