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14 replies

Taking steps backward in recovery

fqfqMember
hello fellow j-pouchers,

I am 4 months out now. I am feeling very frustrated because I thought things were getting stabilized, then the evening / nighttime hell starts up again. My diet is still pretty routine every day - bagel/eggs for breakfast; fish sandwich for lunch; ice cream with a few walnuts for dessert; fish, steamed veggies, yoghurt for dinner. Note, I do not keep a food journal, nor do I want to. I find it very cumbersome and I just don't want to become so obsessive with diet (i already am hesitant in expanding my diet).

Here are a few of my issues:

First issue:

Sometimes when I poop, the poop feels so "stuck", and I have to strain until it "POPS" out.

Next issue:

Some foods really hurt when they exit my anus. Maybe after a few walnuts or something else? Feels like rocks scraping out of my ass and "popping" into the toilet.

Next issue:

I have back-and-forth bathroom trips to get more emptied. For whatever reason, I cannot empty my pouch in the same trip (Note, NO stricture). I crawl back to bed after the bathroom, douse my ass in calmoseptine, and moan in pain.

Next issue:

Sometimes the last bit of gas is so hard to get out, and I really have to strain. If I don't, it gets uncomfortable, and I want to get that gas out.

Next issue:

Sometimes in the middle of the night, I wake up to use the bathroom, and I am so tired, and want to hurry back to bed, that I strain in order to empty the pouch faster. (I am probably not helping things by straining.)

I am so frustrated with my pouch. Please tell me it can STILL get better.

1.) Last bit of gas is so hard to get out, and I really have to strain - Gets better?
2.) Sometimes poop feels so "stuck", and I have to strain until it "POPS" out. - Gets better?
3.) Some foods really hurt when they exit my anus. Feels like rocks scraping out of my ass and "popping" into the toilet. - Gets better?
4.) Sometimes I am so tired, that I strain in order to empty the pouch faster. - Gets better?
5.) For whatever reason, I cannot empty my pouch in the same trip, and have to make back-to-back trips (NO stricture). Gets better?

I still don't see a light at the end of the tunnel. Yes, I am better since my surgery 4 months ago, but I don't notice any MAJOR improvements anymore?, and I am beginning to wonder if these painful "annoyances" and "inconveniences" I have outlined above are just some of the everyday "quirks" you guys allude to when talking about your own j-pouches, and if I will just have to deal with them long term or not. I did not think living with a j-pouch would be this difficult and discouraging.

thank you.
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skn69skn69Member
FQ,
I can answer some of the questions (I have a k pouch so there are some differences)...the 'rocks scraping' are probably the nuts that you eat. One easy method to avoid the problem is to Chew better...The more you chew the less 'rocks' you have in there...turn it into nut butter in your mouth...for the gas, I find that kneading my abdomen helps my pouch (seems like things are blocked at a certain level of my guts or pouch) to empty...if not, twisting, turning, bending forward while on the throne makes it easier to empty things out (seems to rush out with a whoosh!). For the rest, you need a j poucher to help but not eating after a certain hour helps me to sleep through the night.
Sharon
n/an/aMember
fq - I still experience 1, 2, 3 and 5 from time-to-time. Eventually, however, I go back to my "normal". I have no idea what causes this, but my gut feeling is there is a small obstruction (e.g., dried cherries!) and/or cuffitis.

Although you note you do not have a stricture, it does sound like narrowing could also be causing these symptoms.

I fully agree with Sharon - chewing everything until it is a paste in your mouth makes elminating SO much easier. Even foods that you wouldn't think need that much chewing, come out easier when liquified during the chewing process.
R RLCMember
fq -
I am 5-1/2 months out from takedown and it does get better. I had all that just last month however, I am on hydrocortisone ac suppositories because UC was back in anus/rectum. So, I think that taken this has helped me out in the burning/razor issues.
I did and still get up at night and go at least twice a night. I think your pouch has to expand and there is nothing that we can do it is just the j pouch. I had the emptying problem, as well. It seems to be better for me at 5-1/2 months.
Remember 6 months to a year was what I was told by my surgeon and it seems like they are right on the money for me. Some other j pouchers have done better but I am not one of them, yet.
Take one day at a time! I know it is frustrating but we have to stay as positive as possible (easier said then done). Smiler
Roberta
fqfqMember
thank you everyone for the response (and for reading my long post - i was sort of all over the place when i wrote it!)

skn69 - i thought i was chewing enough, but i guess i need to chew even more. that is too bad nuts hurt so much coming out. Of course now that I can't have nuts, i love them even more!

NancyAnn - do these "tight" spots or "narrowings" get better over time? Would stretching or exercise help? I think maybe that is why i have opposite problem of most j-pouchers and feel like it is harder to empty.

suebear - did you experience any of the things I mentioned above in your first year of recovery? And now, several years later, everything is smooth? Can you explain some of the things you experienced early on, that you don't have an issue with anymore? I just cannot visualize the act and j-pouch pain of pooping changing much?

liz11 - last time i was checked for stricture was 2 weeks ago and doc said it was nice and open now. i have not had any tests done on my j-pouch since being discharged from the hospital. the doc did mention there were a couple spots high up in the intestine that seemed to move slowly, but that could ease up later? my doc doesn't want to run ANY tests in the first year - unless absolutely necessary - i think they think things will change a lot in the first year and they want me to heal up as much as i can first??

Subzeromambo - that is a cool screen name. do you have subzero fridge? i love those. So you avoid nuts? I hope later down the line we can eat nuts without so much pain. I guess combining nuts with ice cream does not help. I remember the fish sandwich i eat usually has a side of french fries. So looks like diet is playing a bigger factor than I thought. can't eat nuts. can't eat dairy. can't eat fried food.

RLC - nice to know that in just 1.5-2 more months i can have even more improvement. but it seems to have slowed or "plateaued" a bit, and i hope that is not the case. it HAS to get better than this?! right?
~

This is too restrictive and I am hungry! i did not get a j-pouch to have MORE restrictions; i got it to feel less restricted! more freedom than ostomy (or not??????) so what is the solution? Do we avoid these foods for a while? take prunes with our fries? i am not sure how to proceed?

thanks, my sanity savers!
n/an/aMember
fq - my episodes which sound SO like what you perfectly describe, come and go. Honestly, I don't know what they are and after 19 years do not plan on exploring the possibilities, as long as they are only intermittent.

I hope yours resolves soon - if not, I'd mention it to your doctor ...

P.S. I still don't eat deep-fried foods, except for an occasional small portion of fries. They just don't agree with me, but maybe that's not a bad thing - not healthy anyhow!
I ISeeUCMember
Passing insoluble fiber--nuts & grains--feels like passing cut glass. I'm not sure why it happens now when it didn't happen before my colectomy--I've got the same anus (I think)--but it does. Nuts, bran fiber, corn meal (sometimes) and seeds are all a problem. I'll have them in moderation but with the knowledge that they'll be a literal pain to pass. (I mix raisin bran 50/50 with rice crispies to soften the edges of the bran.)

To help clear the pouch, I'll lean back on the seat and lift my knees a little, sometimes pressing them together.
C CeeeeCeeeeMember
For me, an apple a day.......keeps things moving. So does using Metamucil. It is a stool regulator and keeps things smooth, easy to pass and gentle on the anus. Keep experimenting. When you feel the urge to empty again just after having emptied, this is gravity and normal bowel action at work. Sometimes you can just wait until the urge passes. Other times, getting up and emptying again really does the trick. Try Metamucil! Over time you will learn what works best for you. Hang in there!
fqfqMember
great suggestions...thanks everyone! to be honest i am rather exhausted. i know i need to keep learning and experimenting and trying new things (again....and then AGAIN later in case it didn't work the first time), but i just want to eat and live freely, without thinking about it, or planning around it, or modifying it!!!

Not possible with a j-pouch ???? Am I asking for too much ????

i tried metamucil a month ago and found that it irritated and caused more stools, but i think it is a good idea to try it again and see if it helps.

the experimentation itself is frustrating. You see, it is not enough to try fiber. it is about trying 5 brands of fiber? Before, after, or during a meal? In pill form, in powder form, in cookie form? Once, twice, or three times a day? Soluble or insoluble? With or without anti-diarrheals? While tap dancing or standing on my head? (Then repeat in a few months if it doesn't work). I am getting tired just thinking about it...

I cannot keep track of what works and doesn't work, and I don't understand any patterns?? I know I would make a horrible scientist!

but... I suppose I am now desparate to make pooping "smoother" and less painful.

i literally feel like my ass has been ransacked, stampeded and branded by the time i'm off the toilet. it shouldn't be so painful to poop. i don't know how my ass keeps repairing itself, but i hope it doesn't crash and "poop out"!
R RLCMember
fq -
I am so with you! I hear your frustration and I am right with you. Everyone here on these posts say "hang in there" so that is what we have to do!
Our bodies are not our own and we are not in control! That is what I have found throughout all of this. Remember science is guess and test and we have to just keep guessing and testing!
All these suggestions help me out a great deal so I just keep reading and doing what I can!

Roberta

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