Rachel, are you still using canasa? I'm back to using it 7 days/week and things are working much better; I'm going back to 3/week now that things are under control.
Another couple strange things to consider trying: sabra hummus (creates just enough gas to push things through), and I've been eating home-made gluten free (mostly oat flour) cookies. I swear, things never work better when eating these items. If interested, I will post link to recipe...
No, the GI had me halt the Canasa, because I developed a very sore area on the left side of the anal canal with it.
I'll get my groove on again; it's not so much that I need a laxative TO go, I need the magnesium to "thin things out," if you will.
Even thin, COMPLETELY thin, there's still a bit of struggle. I do honestly think there's swelling going on at the exit there, and that some of it is actually tenesmus, too. Today, I'm being careful. Had an egg, a juice (carrot, cucumber, orange, lemon, ginger, and apple), and a Thai over the counter soup with rice noodles and lemongrass and chili (very mild; like the Thai version of ramen). I need no bulk at the moment.
I'll get my groove on again; it's not so much that I need a laxative TO go, I need the magnesium to "thin things out," if you will.
Even thin, COMPLETELY thin, there's still a bit of struggle. I do honestly think there's swelling going on at the exit there, and that some of it is actually tenesmus, too. Today, I'm being careful. Had an egg, a juice (carrot, cucumber, orange, lemon, ginger, and apple), and a Thai over the counter soup with rice noodles and lemongrass and chili (very mild; like the Thai version of ramen). I need no bulk at the moment.
And lol. Yes. Hummus usually does give me gas. Good point. All galactans do!
Sure, post the recipe. I'm always up for new ones!
Sure, post the recipe. I'm always up for new ones!
I have had some similar issues lately with emptying and narrowing due to age of pouch. Had TD 2004. My surgeon recommended an irrigation tube with a light lax. It's working great right now. I empty before bed and if I need to during the day. Takes only a few minutes. Finding a huge difference. She wanted to try this as opposed to returning to ostemy. Hope this helps!!
All the best.
All the best.
Here's another male chiming in :-)
I've also had emptying problems lately and, like Fosty, found than using a catheter helped a lot.
See my post in Fosty's thread "Irrigation tube ..Anyone ?" in this forum if you want more details about how Brits who have been doing it for decades do it :-)
Good luck, keep us posted !
I've also had emptying problems lately and, like Fosty, found than using a catheter helped a lot.
See my post in Fosty's thread "Irrigation tube ..Anyone ?" in this forum if you want more details about how Brits who have been doing it for decades do it :-)
Good luck, keep us posted !
Hi Rachel, I saw that you have oranges in your juicing. My outlet from my j-pouch gets pretty irritated when I have orange juice, even diluted orange juice. I have noticed this to be more of a problem after having my stricture. I know this is not causing your problems but it might be aggravating it. Hope things settle down for you.
Just found this thread and am very curious. I am 19 years a jpoucher and only in the last three have had 3 blockages. They found many dialated loops and areas of stricture, so the problem is not so much in the pouch itself but higher up 'the line'. This last partial blockage, started with thick hard to pass stools very far apart, also with no gas as Jan described. I know that no one can afford a hospital stay, and I am a nursing student (again) an LPN going back for my RN so really cannot lose time for illness. Any suggestions on what to eat on the go? I have celiac so a simple sandwich is out. I pretty much avoid all grains as they put weight on which I def don't need at 200 pounds 
Any healthy food suggestions that don't slow the transit time but also don't cause frequency? Tall order, I know :/
Any healthy food suggestions that don't slow the transit time but also don't cause frequency? Tall order, I know :/
Doing a Medrol pack taper and starting Humira tonight. Things were a *bit* better today, but not all the way.
OJ never has bothered me, and yesterday, after the juice, I was better than I'd been. WHOLE oranges do, but that's because of their fiber; they don't break down. But I've never had irritation with orange juice.
I hesitate to give you food ideas, because for me, food anymore is hit or miss. I ate EVERYTHING I wanted for 20 years, including mushrooms and nuts, etc., and now I cannot tolerate those; they too often get "stuck" at the exit, due to my more recent narrowing. I just don't chance it anymore.
And for me, some days let's say, peanut butter, won't be any issue, and some days it will make things too thick. Most of the time, lettuce is fine; this past week, not so much. Potatoes can go through unnoticed or make things like paste. It changes all the time.
I vacillate so much, I am not sure where I stand with tolerating anything these days! But I just try to stay away from things that I know bother me or that have a very high fiber content. Past culprits: bean sprouts, bamboo shoots, mushrooms, quinoa, nuts, seeds in bulk or bigger than a sesame seed on a bun, whole oranges...
OJ never has bothered me, and yesterday, after the juice, I was better than I'd been. WHOLE oranges do, but that's because of their fiber; they don't break down. But I've never had irritation with orange juice.
I hesitate to give you food ideas, because for me, food anymore is hit or miss. I ate EVERYTHING I wanted for 20 years, including mushrooms and nuts, etc., and now I cannot tolerate those; they too often get "stuck" at the exit, due to my more recent narrowing. I just don't chance it anymore.
And for me, some days let's say, peanut butter, won't be any issue, and some days it will make things too thick. Most of the time, lettuce is fine; this past week, not so much. Potatoes can go through unnoticed or make things like paste. It changes all the time.
I vacillate so much, I am not sure where I stand with tolerating anything these days! But I just try to stay away from things that I know bother me or that have a very high fiber content. Past culprits: bean sprouts, bamboo shoots, mushrooms, quinoa, nuts, seeds in bulk or bigger than a sesame seed on a bun, whole oranges...
I swear by these cookies, weird - but they work. http://www.bobsredmill.com/recipes.php?recipe=1859.
Couple subs: I use 1/2 c. honey and add a little extra baking soda, and I also add about 1/2 c. gluten free oats.
Couple subs: I use 1/2 c. honey and add a little extra baking soda, and I also add about 1/2 c. gluten free oats.
Hi Rachel, Good to hear OJ is ok for you. That is one thing I miss because it does make me tender "down there." We are all just so different, that is what makes these pouches hard to manage some days. 
So I'm on the Medrol quick taper, to kick start the decrease of inflammation, then tomorrow: start Humira.
Nervous, happy, a whole plethora of emotions.
Hope in 3-4 months I can report back I feel better! So so SO hopeful this fistula is one of the ones Humira helps. Oh, I would be elated. It's all I want for Christmas, Santa!
Nervous, happy, a whole plethora of emotions.
Hope in 3-4 months I can report back I feel better! So so SO hopeful this fistula is one of the ones Humira helps. Oh, I would be elated. It's all I want for Christmas, Santa!
I hope it does the trick, Rachel! Do you have any idea how they figure out when/whether to remove the seton? It's easier for me to visualize a fistula healing if there's nothing physically preventing it from resolving fully.
Hi, finally there is someone that has the same issues i have. I hear you i want my old pouch back. I do have a fistula with a seton. We have had the pouch almost as long as each other. I got my seton in 2012. I simpesize with you. Sometimes my pouch just release liquid, and times everything, very fustrating.
Scott, the CRS wants to leave it in for at least the first month, to see how I respond to the Humira, then likely take it out.
F-TOY-120, I feel your pain, honey. Though I never have a pouch that "pours out..." mine likes to KEEP IT IN too much! lol
F-TOY-120, I feel your pain, honey. Though I never have a pouch that "pours out..." mine likes to KEEP IT IN too much! lol
What is crs and humria
Colo-rectal surgeon = CRS. I still see my surgeon, he manages my seton and dilations.
My new GI is who is treating me for IBD issues of the pouch. We're taking the chance that, with all of my symptoms over the past 2 years, including the fistula, that I've newly developed some inflammatory bowel disease of the pouch (more likely the cuff, etc. He says that "old" pouches are coming to him with similar issues... I keep saying, You can take the colon out, but you can't take the genetics away.)
Anyway, I had a GREAT run of 20 years with my pouch, then in 2012, things started to go off.
Low grade fevers, general pouch changes, bloating, then the perianal abscess and fistula... along with now a + C-reactive protein lab, stricturing at the exit. He wants to treat me as an IBD patient, and the drug, the biologic Humira, can *sometimes* heal a fistula tract IF that fistula tract is related to something like perianal Crohn's disease (or in my case, perhaps, a new form of IBD, not *really* Crohn's, but not *really* UC... he says suspicion is that this is happening to older pouches, and that is how he's treating me.
I'm ready to give it a whirl because I hate hate HATE this fistula, and my surgeon won't touch it with a surgical option, BECAUSE of my J pouch, citing that any of the surgeries could be debilitating to my sphincters. Another person on this site had surgery for a fistula, and became incontinent. NOT where I want to go, at age 43 (well, at ANY age).
First of four Humira shots in. That wasn't too bad. Fingers crossed the rest go in as easily!!!!
My new GI is who is treating me for IBD issues of the pouch. We're taking the chance that, with all of my symptoms over the past 2 years, including the fistula, that I've newly developed some inflammatory bowel disease of the pouch (more likely the cuff, etc. He says that "old" pouches are coming to him with similar issues... I keep saying, You can take the colon out, but you can't take the genetics away.)
Anyway, I had a GREAT run of 20 years with my pouch, then in 2012, things started to go off.
Low grade fevers, general pouch changes, bloating, then the perianal abscess and fistula... along with now a + C-reactive protein lab, stricturing at the exit. He wants to treat me as an IBD patient, and the drug, the biologic Humira, can *sometimes* heal a fistula tract IF that fistula tract is related to something like perianal Crohn's disease (or in my case, perhaps, a new form of IBD, not *really* Crohn's, but not *really* UC... he says suspicion is that this is happening to older pouches, and that is how he's treating me.
I'm ready to give it a whirl because I hate hate HATE this fistula, and my surgeon won't touch it with a surgical option, BECAUSE of my J pouch, citing that any of the surgeries could be debilitating to my sphincters. Another person on this site had surgery for a fistula, and became incontinent. NOT where I want to go, at age 43 (well, at ANY age).
First of four Humira shots in. That wasn't too bad. Fingers crossed the rest go in as easily!!!!
Ok, thoughts on Humira.
Belly shots are WAY less painful than leg shots. Leg shots = YOWZA. My daughter was right, they DO sting! But the first one I did, didn't hurt at all. Hmmm. Used ice before each one, that did help some.
Belly shots are WAY less painful than leg shots. Leg shots = YOWZA. My daughter was right, they DO sting! But the first one I did, didn't hurt at all. Hmmm. Used ice before each one, that did help some.
Good luck, Rachel!
Good healing vibes coming your way that this is the path to feeling better, and hopefully sending that fistula packing for good!!!
Good healing vibes coming your way that this is the path to feeling better, and hopefully sending that fistula packing for good!!!
What state do you live in, and can i get your dr.s info, this is such a relieve for me my surgeon retired, and the person that took his place says my pouch is fine. My original surgeon dr. Funklesrud at ucla was one of the pioneers of the pouch.
I went ahead and messaged you.
Well, this is an interesting and timely topic to me!
Five months ago, my previously very active but live-with-able pouch suddenly changed its character completely.
One day I was passing 10 or so BMs a day with no trouble whatsoever, lots of gas, and the loud "splurting" noise after a BM to let me know the pouch was empty.
The next day, I was bloated, passing only one or two BMs a day, and struggling to empty my pouch. Almost like constipation!
After much investigating, a CT scan finally revealed to my surgeon that my pouch is greatly enlarged. Basically, the muscles in the bowel wall that used to hold the pouch in shape and push BMs out have stretched.
My surgeon asked me to try a Fleet enema twice a week. It's not pleasant, and provides only temporary relief from the bloating. As soon as I eat or drink again, my abdomen swells up.
I am going back for a further appointment next week. I knew the j-pouch would probably not last me into old age, but I wasn't expecting it to start failing now when I'm only 39. (My pouch is 14 years old.)
I will be asking what to expect next. I don't know whether this means I need to consider another ileostomy soon or not. Ho hum.
Five months ago, my previously very active but live-with-able pouch suddenly changed its character completely.
One day I was passing 10 or so BMs a day with no trouble whatsoever, lots of gas, and the loud "splurting" noise after a BM to let me know the pouch was empty.
The next day, I was bloated, passing only one or two BMs a day, and struggling to empty my pouch. Almost like constipation!
After much investigating, a CT scan finally revealed to my surgeon that my pouch is greatly enlarged. Basically, the muscles in the bowel wall that used to hold the pouch in shape and push BMs out have stretched.
My surgeon asked me to try a Fleet enema twice a week. It's not pleasant, and provides only temporary relief from the bloating. As soon as I eat or drink again, my abdomen swells up.
I am going back for a further appointment next week. I knew the j-pouch would probably not last me into old age, but I wasn't expecting it to start failing now when I'm only 39. (My pouch is 14 years old.)
I will be asking what to expect next. I don't know whether this means I need to consider another ileostomy soon or not. Ho hum.
By the way, I should add that my pouch apparently looked fine when my surgeon did a sigmoidoscopy - it was only when he saw the films of the CT scan that he saw the enlargement.
So, if you can ask for a CT scan, I would recommend it. In my case, I had to fast for several hours beforehand, so I made sure to eat a normal lunch early so the bloating would be apparent. I also had to drink dye, and as liquid bloats up my stomach too, this kind of "helped" to show the problem.
Best wishes to everyone who is struggling with changes in their pouch,
Sarah in Australia
So, if you can ask for a CT scan, I would recommend it. In my case, I had to fast for several hours beforehand, so I made sure to eat a normal lunch early so the bloating would be apparent. I also had to drink dye, and as liquid bloats up my stomach too, this kind of "helped" to show the problem.
Best wishes to everyone who is struggling with changes in their pouch,
Sarah in Australia
Were do i go for private messages couldnt find it
F-Toy, If you have a private message waiting for you, there will be a flashing tab at the top of the forums page "New PM" I think). Just click on it and it will take to it. You can also access private messages by going to J-pouch Community and clicking on Personal Zone. There, you can also change your settings so that you will receive an email when someone sends you a private message (click on edit profile).
Jan
Jan
no real answers for you but all i know is since i have had the pouch the one thing that is consistent is how inconsistent my pouch is and behaves!!!
Amazingly, after my load of Humira, the bump of what seemed to be granuloma tissue, where the seton exited, that stayed sore and miserable all the time?
GONE!
Also the fistula had nearly zero output overnight.
Encouraging!
GONE!
Also the fistula had nearly zero output overnight.
Encouraging!
I've had CTs and MRIs of my pouch in the past year-ish. Nothing looked odd on them.
R-that is awesome news!!! Hope you have continued hope and positive outcome!
Today I have felt better than I have in a long time.
Belly over the weekend was quiet, but my BMs were my old normal. I went to the bathroom 4 times a day, that's it. No bloating or anything like that.
Fistula... I actually forgot about it at work yesterday! And I have no pain associated with it today. Hallelu.
That internal left sided pain bugged me Friday, but not since. It is gone today... that *does* come and go, so I'm not 100% it's gone-gone, or just chilled at the moment, but fingers crossed.
Added bonus after my steroid taper (it's done; ended yesterday) and starting my load of Humira on 9/25? Every morning I was getting out of bed stiff, and my feet and knees have been hurting, and that is gone too! I never think of myself as having arthritis, but I wonder now, based on how I'm feeling in the morning after steroids and a start of a biologic, if I have a "touch."
And yesterday and today, I've been HUNGRY. Insatiably hungry. Now, I suppose that might be steroids, but again, they've now ended as of yesterday (it was just a Medrol taper; you know, day one 28mg thru the day, day two a bit less, etc.). My hunger has been for HORRIBLE foods, though, lol. Burgers. Sesame chicken. Things you would think were things we shouldn't eat... all is good. In fact, today, I've only gone to the bathroom 2 times.
I'm always continent, but had to get up at night occasionally for rectal pressure/tenesmus before the meds, and that's gone too.
I'm still encouraged by this. Especially because the fistula is putting out less, and not bleeding much at all now. AND I am not having any pain associated there, which is the BIGGEST thing I wanted. I hate the seton, but I *hate* it when it hurts me. Now that there's very little discomfort, I keep forgetting about it!
Fingers remain crossed.
Belly over the weekend was quiet, but my BMs were my old normal. I went to the bathroom 4 times a day, that's it. No bloating or anything like that.
Fistula... I actually forgot about it at work yesterday! And I have no pain associated with it today. Hallelu.
That internal left sided pain bugged me Friday, but not since. It is gone today... that *does* come and go, so I'm not 100% it's gone-gone, or just chilled at the moment, but fingers crossed.
Added bonus after my steroid taper (it's done; ended yesterday) and starting my load of Humira on 9/25? Every morning I was getting out of bed stiff, and my feet and knees have been hurting, and that is gone too! I never think of myself as having arthritis, but I wonder now, based on how I'm feeling in the morning after steroids and a start of a biologic, if I have a "touch."
And yesterday and today, I've been HUNGRY. Insatiably hungry. Now, I suppose that might be steroids, but again, they've now ended as of yesterday (it was just a Medrol taper; you know, day one 28mg thru the day, day two a bit less, etc.). My hunger has been for HORRIBLE foods, though, lol. Burgers. Sesame chicken. Things you would think were things we shouldn't eat... all is good. In fact, today, I've only gone to the bathroom 2 times.
I'm always continent, but had to get up at night occasionally for rectal pressure/tenesmus before the meds, and that's gone too.
I'm still encouraged by this. Especially because the fistula is putting out less, and not bleeding much at all now. AND I am not having any pain associated there, which is the BIGGEST thing I wanted. I hate the seton, but I *hate* it when it hurts me. Now that there's very little discomfort, I keep forgetting about it!
Fingers remain crossed.
Sounds Fantastic Rachael! I'm glad you are feeling so much better
I should never be hasty about saying I feel better!!! I still do feel pretty well; just a few things kind of wonky this evening that I thought were abating are sort of still there/back. The left sided pain is mildly returned. Also, bit of blood tonight that had gone away, etc. and almost seems to be in the stool vs. out of the fistula, though it's hard to tell. Through all of this, I've never had blood in the stool... though by blood in the stool, it was blood ON the stool, so meaning blood from somewhere low (ie. like the fistula or cuff perhaps).
Fingers crossed. It's still very early in my journey here, but please say good thoughts and prayers for me.
The steroid ended yesterday, and I swear the steroids were what made me feel better. I love steroids, I totally do... wish they were not such mixed bags so bad for you, in the long term.
Fingers crossed. It's still very early in my journey here, but please say good thoughts and prayers for me.
The steroid ended yesterday, and I swear the steroids were what made me feel better. I love steroids, I totally do... wish they were not such mixed bags so bad for you, in the long term.
Definitely having a few streaks of blood in the stool now. Msg'd the doctor. This is new, though he'd suspected cuffitis in the past.
But surely, the steroid and Humira should be helping that, not making it worse?
I had the best day today... and now, I'm worried.
However, the fistula doesn't hurt at all. I'm just confused.
Jan, any thoughts.
But surely, the steroid and Humira should be helping that, not making it worse?
I had the best day today... and now, I'm worried.
However, the fistula doesn't hurt at all. I'm just confused.
Jan, any thoughts.
Doctor said he wasn't concerned with the little bit of blood... even described it as somewhat "normal" 1-2 weeks after starting a TNF blocker. Don't know if that's true, but in his experience it is, so I'll trust him.
The last BM was without any blood, so maybe it was just some freak thing. I hope. It was only very, very little, almost missed it in the stool, had I not seen it on the TP.
The last BM was without any blood, so maybe it was just some freak thing. I hope. It was only very, very little, almost missed it in the stool, had I not seen it on the TP.
Glad things are sorting out Rachel. I never noticed any specific gut symptoms when starting a new biologic, but my gut was not predictable anyway and I already had occasional rectal bleeding.
I was off the grid for a few days camping (lots of rain, so lots of clean-up now), so just catching up now. Just finishing up a week of Flagyl myself for presumed pouchitis or SIBO (frequency, urgency, and even some leakage). Better now. Yes, I know, dumb to go camping with that going on, but it was planned long ago and I don't like being the party pooper (ha).
Jan
I was off the grid for a few days camping (lots of rain, so lots of clean-up now), so just catching up now. Just finishing up a week of Flagyl myself for presumed pouchitis or SIBO (frequency, urgency, and even some leakage). Better now. Yes, I know, dumb to go camping with that going on, but it was planned long ago and I don't like being the party pooper (ha).
Jan
It sounds like you are still getting better as the days go forward Rachael and that is good news!
I'm going to just stay the course!
The fistula IS doing better, so I'm going to hope that is the general direction we are going.
No blood last night. Fingers crossed!
The fistula IS doing better, so I'm going to hope that is the general direction we are going.
No blood last night. Fingers crossed!
Struggling to pass even liquid stools again. The great feeling I had on the steroid has certainly gone.
MD wants to give Humira it's chance, but argh.
CRS wants to dilate again. Trying to set up an appt.
I'm so confused, and so miserable. Had to resort to the "emergency" Fleets I keep at work.
I'm depressed. Things seemed so promising. I know I have to give the Humira 3-4 months to fully ascertain if it's working, but right now, ugh.
MD wants to give Humira it's chance, but argh.
CRS wants to dilate again. Trying to set up an appt.
I'm so confused, and so miserable. Had to resort to the "emergency" Fleets I keep at work.
I'm depressed. Things seemed so promising. I know I have to give the Humira 3-4 months to fully ascertain if it's working, but right now, ugh.
Treatments that take a long time to work are awfully frustrating. We have to agree to be sick for an extended period just to try them.
I hope this works for you, Rachel.
I hope this works for you, Rachel.
I think I needed a longer steroid taper.
Waiting on a message from the CRS (for a dilation; things got crazy difficult to pass bulky stools this weekend!), but the GI *is* going to add a longer steroid taper. So will start on 40mg and taper down over time, trying to allow the Humira time to "kick in" as he says.
It was sooooo simple before 2012! I was the "Poster Child" for "perfect" J pouches for 20 years! argh
It was sooooo simple before 2012! I was the "Poster Child" for "perfect" J pouches for 20 years! argh