Hi everyone, I’m 25, and had my j-pouch for 6 years now. I’m in a pretty bad flare today but just yesterday I was reading stuff here and was like “man, i should post something nice so people can see this life is still worth it!” and today i’m just hating everything. In my 6 years of having the j-pouch (minus 2 months of ileostomy bag) I’ve finished uni, worked as a teacher, went to concerts and meetings but i also spent so much time in my room, in my bed, crying my eyes out of pain and cancelling plans last minute cause I was having explosive diarrhoea (but of course you say “i have some stomach problem” cause saying i’m literally shitting my pants every hour is not a nice thing to say) anyways, sorry for the rant. I think I just wanted to say that there are good days and there are bad days. Sometimes I don’t even feel sick for a second and I’m like, “woah that is a feeling I have not had for years”. Sorry for rambling, I think I just want to be normal but also tell people who lurk here that there is some hope for us, I guess? If you’ve read this far, thank you, I just cannot sleep because of the pain and wanted to talk to people who understand. Have a happy and healthy life everyone!
Replies sorted oldest to newest
I am sorry you are suffering hon 
Are you using wipes and Calmoseptine???
Hi. Lots of understanding on this site! Many of us have been at some low spots.
But pain isn't something we should have to live with. Where is your pain and when do you experience it - after eating? - when emptying? Do you get scoped regularly? On any meds? If you will share some more about your situation you may get some helpful guidance from folks here.
I’m mostly okay and the pain I mention is just gas and burning sensation when I have diarrhoea. My doctor is amazing and we do scopes and blood work regularly. I think my problem is that I have a genetic issue, so even when I have tiniest amount of my original rectum left, that part gets inflamed real easily.
I’m just really tired cause one day it’s good and then next day everything goes bad even when I control what I eat and drink. Which is the life without colon, I guess?
Hi there. It is the truth. There are good days and bad days. Every once in a while the bad days really get me down. I would pay a million bucks to poop like normal!! But, I am also grateful that I am no longer sick with colitis and did not need a permanent ileostomy. Yet.
Of all the ailments one could have, this is one that is difficult to explain and talk about. Again, I am grateful, for this group and all of you here who understand.
All the best to you
I don't agree with the premise of "good days and bad days", unless you have pouchitis which is either not being treated at all, or treatment is you are getting is ineffective. Your original post does not elaborate on what is causing the "explosive diarrhea." This isn't the norm with a healthy pouch, or an inflamed pouch which is being treated. I have treated pouchitis for over 30 years, and bad days shouldn't be anywhere near as common as good. My norm is to have one bad day a month- maybe- at most. I do have inflammation in my J Pouch inlet and my neoterminal ileum and have had it for a long time, but it's under control.
Are you taking antibiotics, biologics, anything?
@Hope Its OK posted:I’m mostly okay and the pain I mention is just gas and burning sensation when I have diarrhoea. My doctor is amazing and we do scopes and blood work regularly. I think my problem is that I have a genetic issue, so even when I have tiniest amount of my original rectum left, that part gets inflamed real easily.
I’m just really tired cause one day it’s good and then next day everything goes bad even when I control what I eat and drink. Which is the life without colon, I guess?
Have you tried mesalamine suppositories???
@CTBarrister posted:I don't agree with the premise of "good days and bad days", unless you have pouchitis which is either not being treated at all, or treatment is you are getting is ineffective. Your original post does not elaborate on what is causing the "explosive diarrhea." This isn't the norm with a healthy pouch, or an inflamed pouch which is being treated. I have treated pouchitis for over 30 years, and bad days shouldn't be anywhere near as common as good. My norm is to have one bad day a month- maybe- at most. I do have inflammation in my J Pouch inlet and my neoterminal ileum and have had it for a long time, but it's under control.
Are you taking antibiotics, biologics, anything?
Unfortunately there is no diagnosis for the issues I have. Scopes haven’t shown any issues for the past 2 years, blood work looks good except for low iron and I am careful with what I eat. My post was just trying to tell what I felt to someone so I didn’t specify anything. I was in pain and needed to say what I thought but unfortunately no one around me understands. The diarrhoea comes unexpectedly sometimes and with burning sensation. It comes quick, lasts a couple of hours and then goes away. I started to catch myself before it starts but nothing stops it. I take lomotil 3 times a day, don’t eat oily or spicy stuff, usually can’t eat any greens and have some safe food I eat. But as I tried to say in my first post, some days, whatever I do and however safe I eat- I get the painful diarrhoea with burning feeling. My gastrointestinal doctor is good but unfortunately he is no help with this issue and my genetic disease and j-pouch is not very known and studied.
My good days are usually more than my bad days of course, but when it’s bad, it’s just so bad. I hope I explained myself better this time. Thanks a lot for the responses
@Former Member posted:Have you tried mesalamine suppositories???
Haven’t heard about those, will check if I have a way of acquiring them. Thanks!
@Hope Its OK posted:Haven’t heard about those, will check if I have a way of acquiring them. Thanks!
Your welcome! I hear it works for other people for their rectal cuff, hope it works for you 
Hope,
The fact that you are on Lomotil suggests to me your issue is spasmodic pouch or excessive motility. I did have this issue for a couple years after takedown. The explosive diarrhea from excess motility comes in machine gun like bursts of BMs after eating meals. I found that LomotiL is only effective if taken 45 minutes before meals. If not, it's useless, or at least it was for me,because excess motility is the root of the issue and it's triggered by eating anything. So you need to get that pill absorbed before eating not after.
In my case the problem gradually went away. If you have had any surgery within the past 2-3 years, it sometimes takes a while for normal motility to return. In my case I had bowel surgeries in 1992, 1998, and 2000. The last time I had any motility issue was over 20 years ago. Lomotil is a distant memory now, but I found it highly effective when used correctly, meaning 45 minutes before you eat rather than at structured intervals. It shut down the explosive diarrhea. If there is no inflammation, it's like 100% that motility is your issue and there is HOPE (true to your name!) it will resolve with time as it did with me.
The low iron is fixable with meds or in some cases infusions. I once saw a guy in my infusion room who had a bag with what looked like a deep red solution hooked up to his IV. I asked him what it was and he told me it was iron. Not sure what was causing his underlying iron deficiency.
Excess motility may be causing the low iron issue with constant BMs. Your sodium could be low too, for the same reasons. Keep a close eye on both. As you get older, these deficiencies can become hugely hazardous to your health. At age 25 not big of a deal but when you get to 61, you really need to stay on top of it.
Good luck- it may resolve.
FYI
Attachments
Images (1)
Hope-
I get bad burning at times still, too. And I do understand you about good and bad days. It's why I've got a rif on an old Henry Wordsworth Longfellow poem in my bio: when it's good, it's very, very good, but when it's bad, it's horrid!
@CTBarrister posted:Hope,
The fact that you are on Lomotil suggests to me your issue is spasmodic pouch or excessive motility. I did have this issue for a couple years after takedown. The explosive diarrhea from excess motility comes in machine gun like bursts of BMs after eating meals. I found that LomotiL is only effective if taken 45 minutes before meals. If not, it's useless, or at least it was for me,because excess motility is the root of the issue and it's triggered by eating anything. So you need to get that pill absorbed before eating not after.
In my case the problem gradually went away. If you have had any surgery within the past 2-3 years, it sometimes takes a while for normal motility to return. In my case I had bowel surgeries in 1992, 1998, and 2000. The last time I had any motility issue was over 20 years ago. Lomotil is a distant memory now, but I found it highly effective when used correctly, meaning 45 minutes before you eat rather than at structured intervals. It shut down the explosive diarrhea. If there is no inflammation, it's like 100% that motility is your issue and there is HOPE (true to your name!) it will resolve with time as it did with me.
The low iron is fixable with meds or in some cases infusions. I once saw a guy in my infusion room who had a bag with what looked like a deep red solution hooked up to his IV. I asked him what it was and he told me it was iron. Not sure what was causing his underlying iron deficiency.
Excess motility may be causing the low iron issue with constant BMs. Your sodium could be low too, for the same reasons. Keep a close eye on both. As you get older, these deficiencies can become hugely hazardous to your health. At age 25 not big of a deal but when you get to 61, you really need to stay on top of it.
Good luck- it may resolve.
Thank you for the detailed reply. My doctor did not mention that about Lomotil. He only said to me to take it morning-noon-night twice each time. But to be honest with you, I feel like it does not help sometimes. I’ll try your method for a few days and see if it helps.
About motility, I’ll also research that. I’ve had my latest operation in 2022 summer so it’s been now 2 years.
My doctor keeps giving me this iron pill that makes me ill with so painful diarrhoea and does not plan to give me as IV. This monday I have another phone call with him and was actually planing to ask him for an IV instead of the pill cause I am actually scared to take the iron pill, haha.
Lastly, wow! Your first surgery before I was even born! I hope you are feeling good!
Hope, I am doing good and have been for a long time. If you had surgery in 2022 you could be experiencing a lingering motility issue. Try taking the lomotil as I suggested 45 minutes before meals and if you see a noticeable decrease in BMs right after eating meals, it's definitely a motility issue. Lomotil is the drug prescribed for such issues, as suggested by its name although a better name would be Slomotil. As in slower motility.
Many doctors call this phenomenon "spasmodic pouch", "spasmodic bowel" or "irritable bowel syndrome/IBS." Whether you have a colon or J pouch, it's the same thing:
https://www.mayoclinic.org/dis...c-colon/faq-20058473
My father suffered from IBS in most of his later years of life and found that fiber and dietary changes helped.