r/jpouch

Surgery approved. Surgeons are on board. Total proctocolectomy for UC. We will do jpouch.

But everyone is warning me I'll have 20 bowel movements a day for a year. I get it. Were building a new organ.

I can take a few months off work (university lecturer), but how do you live? This whole thing will cost our life savings. I cant just sit in my house pooping for a year. Thanks to bodybuilding I have absolute control and discipline with my diet. Loperamide on hand. Can I do better than 20 times a day for a year?

How do you all survive after this? Secretive rich benefactor?

I’ve had my pouch for 15 years w very few issues. In April I started having frequent (daily) itching and burning in the peri-anal area. It’s worse in the evening and at night. I’ve tested negative for candida yeast and pin worms. I use Calmoseptine cream before bed and when the itching and burning are worst, and it works really well, but I’d like to not need to do this. I’ve eliminated obvious trigger foods like spicy and highly irritating /acidic foods (raspberries), and it’s helped a little, but certainly not completely. Has this happened to anyone else and if it has, what was the underlying issue and were you able to solve it? I am assuming it is pouch related.

Hi everyone,

I’m almost 3 weeks into recovery after my takedown. Having a lot of gas pain, gurgling and about 20 bowel moments a day. The butt burn is getting out of control, I do sitz baths and use zinc oxide as a barrier but it’s staining my clothes bad. I use a small amount as instructed but it seems to always seep through. I do have hemorrhoids on top of it and witch hazel and hydrocortisone cream helped a little but they may be drying me out.

Not sure what I can try that will help but not ruin my clothes.

Any tips would be appreciated.

I had my take down just over 3 weeks ago, since then I’ve been readmitted twice for an obstruction. They said the join of the ileostomy was swollen and not letting stuff through so was eating nothing for a week waiting for it to pass, then they tried me on pureed food which passed alright, then yesterday out of nowhere I went to the bathroom 30 times. It felt like it all cleared out

Then they started me on some soft food (soft mince with mash and gravy) and since then I’ve had barely any output and I’ve got bloated again with the clenching / tightness pain

I’m so fed up man, it’s like one extreme to the other. I don’t know what to trust in my body now and what’s to be expected. I was supposed to be discharged today until this happened, is this relatable?

Does anyone have any problems taking Cipro and having a coffee in the morning?

I’m sorry for posting frequently here I’m just struggling at the moment and looking for advice

I’m almost two weeks post takedown and I only just started eating, I’m having real slow transit time though I mean I eat today and it comes tomorrow in little amounts. The opposite to what I hear other peoples experience is like here. Is this uncommon or is it something that will switch when the bowel starts working properly again?

Is there anything I can do to help this, I’m walking as much as I can and I’m eating small amounts frequently

Hey guys, I’m 15years plus into having my j pouch but recently had to start taking lots of supplements and medication for long covid. Except I’m noticing the pills often come out without being absorbed. I’m on max loperamide and eat things to slow down my system. Does anyone have any useful tips I could try??

Thanks!

Like a lot of us, I’ve had my fair share of traumatizing experiences through my IBD journey: clinicians that didn’t take my symptoms seriously, surgeons that treated me like a slab of meat (just last week I had a colorectal surgeon stick his finger way up into my pouch, causing me a lot of pain, and he didn’t stop immediately when I told him to; when I got down from the exam table, I saw that he was getting ready to use an anoscope, or some kind of device, without telling me); at least a dozen nurses that nodded while I explained my IV-challenges and the advice of other nurses, then ignored everything I said and proceeded to stick me 6 times, blowing out multiple veins and causing me agony while they dug around (“almost got it,” she said for the 6th time), radiology technicians that yelled at me when I explained I needed my wife with me to help calm me and keep me from freaking out, etc etc.

Now, I am trying to figure out how to talk to new providers at future visits, whether for a routine procedure or something like a surgery, about the PTSD I have from all of this. The one time I advocated for myself (mentioned above), the reaction was so unkind that it had me nearly hyperventilating and losing it. I should have left. Indeed, that’s what my mental health therapist said I should have done. He says I have to set boundaries, communicate them, and not let them be violated, i.e. it’s better to leave and not go through with a consult or an elective procedure rather than to let them know, and to reinforce to myself, that my boundaries and needs aren’t important.

This feels really hard for me and I am wondering if anyone else has struggled with this and has good advice about it.

How do you communicate with providers about IBD-related PTSD? How have you worked to protect your mental health while seeking care?

I guess I just want to end by saying that we all deserve to be treated well. And with competence, if not with love. All the best to you, fellow warriors.

Had my takedown a couple of weeks ago, still in hospital since I had a slow ileus and an obstruction of some kind with lots of distention

That has mostly passed now and I have started to eat yesterday, all night had cramps though. They are letting me home today, I’m wondering if this is just part of the process? Like intermittent cramps and pains during the night or following eating

Every time I exercise, it gets sore where my stoma was. Should I mention this to my doctor or am I just really out of shape?

Finally made the decision last month to move forward with my J-pouch surgery. I’ve had my colostomy bag for about a year and a half, and my surgery is scheduled for July 6.

For those of you who’ve been through the J-pouch creation, what are some tips, tricks, or things you wish you had known before or after surgery?

Anything that made recovery easier or helped you adjust? I’d really appreciate hearing about your experiences. Thanks in advance!

Hey yall,

It seems like people that commonly visit these subreddits are often the ones having the most negative experiences. Although I think it's important to hear about potential complications and unforeseen consequences surgeries may have, I wanted to share my own story that has been largely positive.

I was diagnosed with ulcerative colitis in 2023 in the middle of a flareup via a colonoscopy. I was put on prednisone and by the next day I felt completely back to normal. I was also started on mesalamine. My symptoms seemed to remain in remission until around a year later in 2024, when I entered a severe flareup about one month before the college semester ended. I quickly started prednisone without any relief. I was having 30~ bowel movements a day and was unable to sleep more than one hour at a time due to the urgency. I pushed through this flareup to finish the semester, and then one day after my last final checked into the hospital. My body failed to respond to IV steroids or the 2 doses of Remicade I was given as a rescue drug. One week after checking into the hospital I agreed to have my colon removed. Throughout this flareup I had lost 50 pounds, going from a pretty muscular 220 pounds to 170 pounds. Post-operatively my pain was uncontrolled. I remember whoever was managing my pain in recovery telling me they'd get my pain down to a 3-4/10. I continually told them my pain was at a 9/10, without improvement. Eventually they seemed to give up, asking me one last time what my pain was at to which I responded 9/10 before they transported me to my hospital room. I felt like my abdomen was tearing apart when I was "dropped" from the transport bed into my hospital bed. That night I barely slept, constantly pressing my call button and begging for pain medications my nurse wasn't authorized to give me.

After the hiccup with pain control I seemed to recover pretty quickly after the total colectomy, leaving the hospital after around 4-5 days post-op. Unfortunately after I got home things went bad quickly. My pain once again became severe, and I returned to the hospital to find I had an infection (I think E. Coli in my blood and also some fluid in my abdomen or something). After a combined ~1 month in the hospital during this time I went home again, now just working on adapting to my new ileostomy and resuming life. I quickly figured out what worked for me in managing my stoma, and ultimately was able to eat whatever I wanted without any issues. I even started lifting at the gym again and building up some strength. I'll never forget how it felt being able to bench press 205 pounds for 5 sets of 5 repetitions before surgery and then laying down on the bench press after surgery only getting 55 pounds for 10 repetitions. Ultimately though, the end ileostomy was treating me well.

My next surgery happened 6 months later, removing my rectum, forming the J-pouch, and creating the diverting loop ileostomy. I had read lots on reddit about peoples' struggles with this loop, and thus was a little concerned. Surgery seemed to go smoothly but unfortunately I ended up having my first run in with the NG tube. I can now confidently say the worst part of this entire experience was that damn tube. I would gag anytime I moved with it in, and honestly having it in for the 2-3 days seriously felt like multiple weeks. After 3-4 days in the hospital I went home. Unfortunately once again I quickly deteriorated at home, and returned to the emergency department where my sodium was 110 and was quickly admitted to the ICU. At this point I ended up needing another surgery because strictures were blocking output from my ostomy. Ultimately that surgery went smooth, and minus one additional NG tube placement I returned home again without issue. My loop ileostomy experience wasn't bad. Yes it was maybe a little more difficult to manage than the original end ileostomy, but honestly once I found out what size hole to cut in my bags I had no real issues. I could still eat anything I wanted and continued to be pretty active.

My final takedown surgery took place 6 months later. For once I didn't have any complications and went home the same day of the surgery. The J-pouch has had its ups and downs. Immediately after surgery I felt intestinal cramping pains, struggled to figure out how much Imodium/psyllium husk to take, and also my incision opened so now I have a huge scar lol. I figured out for me 1 tsp Metamucil 2x daily seems to work well. I still struggle to pass gas, sometimes feel urgency (usually from built up gas), and now do stay clear of certain foods (pineapple, nuts, popcorn, spicy food) due to discomfort passing them. Overall though, I live a very normal life. I play in a basketball league weekly. I lift weights at the gym 6 times a week. I worked a full time job without breaks. I would have been fine spending the rest of my life with an ileostomy, but I do really appreciate not having to worry about changing bags, bags leaking, etc. I think the main advantage and disadvantage of a J-pouch is the fact that you have to poop again. You know when you pass stool and have good control over it, unlike the bag. The unfortunate thing is for me at least spicy foods, nuts, popcorn, etc can be very painful to pass lol.

Overall yes I miss having my colon but I am living a very full life with the J-pouch. Maybe the thing I'm most proud of is that I will be starting medical school in September this year, having spent the last year applying. Maybe one day I'll be a gastroenterologist or colorectal surgeon. I know if you've read my whole journey there definitely were struggles along the way, but I hope this can reassure at least a few people that there is light at the end of this tunnel. If anyone has any questions feel free to comment or DM me.

I need to hunker down on a writing project, popcorn was my former go-to. I am trying to reduce sugar as well. What’s a good snack that I can eat one piece at a time?

Hello all,

I’ve had my j-pouch for 1.5 years with no issues. 5 days ago I was on a road trip and came down with cramps, constant watery diarrhea, etc. I felt pretty awful for a few days there but I feel better now, though I’m still not 100%. I feel a little tenderness behind my rib cage so not pouch specific. My question to experienced j-pouchers is, is this just a bug or something I ate? Or is it pouchitis? Something else? Is this a normal thing to expect?

Thanks!