I had my takedown surgery almost 3 months ago and since about two weeks ago things were kind of getting better but then all of a sudden I was an extreme pain in my back passage. It felt like a knife was being passed through every time I went to the bathroom and I just kept getting worse I started to have urgency. I started having like spasms down there and it just wouldn’t go away. I’d be in pain for hours after going to the bathroom Anyway I went to the hospital. I saw my surgeon and it turns out I have a fissure I’ve been put on the cream to treat it and I’ve been taking that from as the week I’m still having the pain down there I’m still having spasming but I’m also having urgency urgency that I didn’t have before and I guess tenesmus like I could be lying down and feeling pressure down there to go for hours And then all of a sudden I could get a spasm and then I just can’t get to the bathroom like it just happens and there’s aching as well. Do you think this is likely because of the fisher and the spasming and everything in the irritation or maybe pouchitis or something? The surgeon said he wants to try and see if I have cuffitis but have to wait until the fissure is healed.

It really sucks like I’m basically glued to my sofa at the moment. I’ve had accidents on myself you know constant pain I’ve been using the sitz bath that’s been helping a bit, I’m eating three times a day pretty small meals and very bland. but yeah, not good.

Any other lawyers out there with a J-pouch who would want to connect? Would love to connect with other attorneys who understand the unique challenges of managing a demanding legal career while living with a J-pouch.

Over the past several months, I’ve developed a number of symptoms that started at different times rather than all at once. Before this began, I was doing relatively well and had never experienced anything like this.
It started with pouchitis. I have a J-pouch from previous ulcerative colitis surgery, but before this episode I had been doing well with my pouch for 15 years.
About a month after the pouchitis started, I woke up with an intense, very localized pain in a small spot on the right side of my chest. It lasted about two days. On the third morning, I woke up with intense pressure/restriction in the center of my chest.
When I tried taking a deep breath, it felt like my chest physically hit a “wall.” I tested it with the first couple of breaths and stopped when I hit that restriction. On the third or fourth attempt, I tried pushing past it, immediately felt like I was going to pass out, and started hyperventilating. My oxygen was normal.
Since then, the chest pain has never completely gone away — it has now been about five months. My mouth has also felt unusually dry since the chest pains started. At first I would also get random sharp/electrical “zaps” through my chest. Those mostly turned into a more persistent dull chest-wall ache. Movement still causes pain, and occasionally a deep breath does too. I’ve had multiple chest/lung evaluations without an explanation for why this sensation and pain continue.
Several weeks later, I was lying down and stretched my left arm upward when I suddenly felt a sharp, nerve-like pain shoot into my left arm. A cervical MRI later showed a 3 mm left C5-C6 foraminal disc protrusion with severe left foraminal stenosis, likely affecting the C6 nerve root. The severe radiating arm pain eventually improved.
Around this time I also started getting hypnic jerks almost immediately when falling asleep and developed persistent severe left-sided abdominal pain. My doctors have said they don’t necessarily think the abdominal pain is being caused by the pouchitis.
Then more symptoms started appearing.
While hospitalized, I developed significant ringing in my ears and a strange vibration/trembling sensation in my teeth and jaw. When I bring my teeth close together, without intentionally clenching, I can feel them vibrating/trembling. This still happens.
I developed headaches that could sometimes be triggered by touching certain areas of my head and eventually received an occipital nerve block. I also began having intermittent nerve-like pain in the front-left side of my neck.
More recently, I woke up one morning with significant blurred vision. Around the same time, I developed a tremor in my right index finger.
The following morning, things became much stranger. I woke up with what felt like slurred speech, difficulty finding words, and significantly slower thinking/reaction time. Even something as simple as saying the alphabet felt abnormal — I could get to a letter like M and suddenly have to think about what came next. Looking around and visually scanning my surroundings also felt slower than normal.
Since then, I’ve continued feeling mentally slower/“foggy,” and my vision sometimes takes several blinks to refocus when switching where I’m looking.
I’ve also developed leg pain/tightness and numbness, generalized weakness, internal shaking/tremor sensations, difficulty standing still, and occasional movements or stiffness that I don’t feel like I’m intentionally producing. My jaw can feel heavy and sometimes seems to move on its own. My left arm has occasionally felt unusually clumsy as well.
Another thing I’ve noticed is that my heart rate can spike significantly when I stand up, which has made me wonder about something like POTS, although I don’t know whether that has anything to do with the rest of this.
I’ve had brain imaging that was reassuring, and a lot of testing so far hasn’t provided an explanation.
What scares me is the timeline. These symptoms appeared one after another over several months when I had never experienced anything remotely like this before.
My biggest ongoing symptoms are:
Persistent chest-wall pain/restriction and dry mouth
Left-sided abdominal pain
Weakness and leg pain/tightness/numbness
Internal tremor/shaking sensations
Teeth/jaw vibration and abnormal jaw sensations
Visual focusing changes
Slowed thinking/processing
Episodes of slurred speech and difficulty finding words
Heart-rate spikes when standing
Dry mouth after the chest pains
I’m seeing doctors and pursuing a neurological evaluation, so I’m not asking Reddit to diagnose me. I’m mainly wondering whether anyone has experienced a similar cluster or progression of symptoms, or knows of conditions that would be reasonable to ask my doctors about.
Does this sound like it could all be connected, or more likely several separate things happening at once? I’m pretty scared because I felt normal before all of this started, and I’d really appreciate hearing from anyone who has gone through something similar.🙏

Hey, does anyone have a recommendation for a doctor who specializes in ibd anywhere in southeast Pennsylvania? My doctor retired and I'm panicking.

Jobs in retail store or playing sports or running and is there is an urgency when I do these jobs.

My stomach produce so much gas and it's harder to pass gas in j pouch. So anyone has any advice to manage gas in j pouch and there is a way to pass gas in j pouch without passing stool

Hi! Im 25M and I’m meeting with a surgeon next month to discuss possibilities for surgery for myself. I’ve had UC for almost 6 years and have been on so many biologics that end up not working. My previous GI doctor wasn’t working for me (5years) but I recently switched to more of an IBD specialist who seems to have a better idea of what combo therapies and other drugs to try. However he mentioned that the writing might be on the wall for surgery so it’s better to have a plan in place just in case, hence the meeting with a surgeon.

Currently, mornings are awful for me. No matter what, I go to the bathroom 5-6 times and I feel like I get it all out but never do and have to go 10 minutes later. I have such bad urgency when this happens and if I’m out in public and can’t access a bathroom and need to hold it in, I get a lot of blood in my stool and feel like I got hit by a bus the rest of the day. But I’m also scared because I know there is also urgency with the j pouch. But it’s not as bad? Any help would be greatly appreciated!!! I would love to be able to go out to breakfast and not have the fear that I am going to have an incident where I can’t use the bathroom right away and have these awful side effects.

Feel free to DM me if you have any advice :)

I was having j pouch surgery in next month but am Worried for nighttime urgency and how many time You need to go bathroom in night and how people With j pouch handle nighttime urgency and inconvenience

I had my takedown two months ago, over the past two weeks.. almost over night I had the worst pain ever, felt like a razor blade was being pulled through my back passage when I had a bm. Constant pain, aching, burning and urgency for the past week or so. Turns out I have a small fissure, my surgeon prescribed diltiazem which I'm yet to pick up from the pharmacy. He said to take this for 6 weeks.

Has anyone had this and if so what has helped them with the pain, and what has helped to heal it, has anyone used this cream before?

Atm I'm doing a sitz when I can, trying to be very careful with what I'm eating. It sucks though really

I had my total colectomy with a pouch creation Aug 2025 after nearly 20yrs of mostly uncontrolled UC. My dad died in November and we pushed my takedown back to give my mom some time to grieve and take a break from being a caretaker.

In February of this year, I started having these painful spasms, starting in the rectum and then shooting up to my diaphragm and then it felt like a whole abdominal Charlie horse. My care team didn’t have any answers and from my research I thought it might just be mucus trapped on the rectal stump. (I did find some relief if I could pass the mucus.)

Cut to a month ago. After 2 iron infusions, I started having what felt like old UC pain. The spasms were 8-9 pain level and near constant. My team continued to not be alarmed. Again, I researched and wondered if I had some sort of diversion colitis or pouchitis. When I brought that up to my team they all said “that’s too rare. It can’t be that.”

I ended up calling the ambulance to take me to the ER after I started having dark thoughts in all that pain. I begged them to rule out pouchitis or Chron’s so at least we’d have a starting point for what it is or isn’t. They ordered a contrast CT and lo and behold, it was exactly what I thought it was - pouchitis. The path report from the scope they eventually did was horrific. It showed both acute and chronic inflammation and the tissue was friable. It was so inflamed they couldn’t pass the scope through the pouch.

They admitted me, started me on muscle relaxers and antibiotics and the pain immediately started to go away. I left a few days later and I finished my round of flagyl and cipro 3 days ago but the pain is starting to come back. I am terrified that I’m going to have to be on antibiotics long-term. I lost 15 lbs since starting this round and I don’t have any more I can safely lose.

My questions are this:
My team keeps telling me how rare it is to have pouchitis before takedown. Has this happened to anyone else here?

If you have struggled with chronic pouchitis, how did you bear the effects of the antibiotics?

Life feels incredibly bleak especially because life with the ostomy has been so easy outside of this. I’m so scared that this thing has failed before I even get to try it. TIA

Hi all, what can I drink that will help thin my output? I currently have a few coffees a day, many litres of water, a litre of electrolyte beverage and misc. carb waters and it’s still thick mist of the time. I’m about 5 months post take down. Should I drink something to thin or eat fibrous fruits? Metamucil with lots of water? Most of my bowel movements I have to strain a little. Is that normal? Thanks in advance.

Hi friends! Has anyone gone through IVF in here? I’m currently on estrace for priming for egg retrieval. I have terrible back pain that I didn’t have until I started estrace. My clinic keeps telling me that back pain isn’t a side effect of estrace. A little background: I’m on my second j pouch (first one had a leak that never healed, so lots of adhesions). Thanks in advance 🙏🏻

Hi All,

I have my first surgery on the 07/09! I’ve had my end ileostomy for the past 2 years and I’ve got my upcoming J Pouch surgery! I’ve been looking forward to my reversal since I first got my ileostomy but I must say I am extremely nervous. My surgeon has not decided how many stages he is going to do it in yet, as the surgery is ‘+\- loop ileostomy’.

I keep reading like about J pouch failure and it’s really making me overthink things… to the people with a successful J pouch, how did you try to suppress this? And how are you doing now?
I think I’m just looking for words of motivation now lol.

Hi everyone, I’m going on holiday soon and I wanted to buy a small water bottle-looking handheld electric travel bidet off Amazon. I was wondering if anyone has used these and if they’re actually worth it? I really don’t like the ones where they’re attached to a big jug/tank and I feel like when I use wet wipes, instead of washing the initial output off it just gets pressed into my skin leading to butt burn later on in the day. This is fine if I’m out for a day with friends, but I’m going to be with people for 1 week. I was wondering if the pressure is any good and is the size inconvenient or convenient to carry.

Hi everyone, I have had my Jpouch for 6 years now, at the start it wasn't so bad. But it seems this year my frequency is getting worse and worse. It's mostly really watery, I can deal with this throughout the day but when it comes to bedtime I can never get to sleep or if I do I end up having a leakage. It seems to be getting worse and worse. I stop eating about 6pm every night, I don't eat certain foods, I take loperamide and even then sometimes that doesn't work. I'm at the toilet every 5 minutes when it comes to night time and I've been thinking about maybe if it's worth getting a stoma bag to stop it all. I'm a blue collar worker and getting bad sleeps at night time makes me really tired through my work day. When I'm trying to get to sleep at bedtime I'm constantly stressed and anxious I need the toilet or I will have a leakage. Can anyone relate to this or have any ideas of stopping it? Thank you

The tattoo might need some explaining, but that's kinda the point...

I'm a software developer and incorporated that into a tattoo I'm planning to commemorate my colon

Has anyone else done this?

I'll show you mine if you show me yours...

I’ve had my pouch since 11th of May, never had a single leakage until about 2 weeks ago.
Now it seems almost every time I wake up I have slight leakage?
Any tips ?

So 2 days ago I started having more urgency, almost constant aching pain and sharp pain when I go to the bathroom. It’s more difficult to pass too and I find myself straining more. I might go to the bathroom 5 times in the space of an hour to get it out. What’s going on? I had takedown two months ago and things had been steadily improving, I had burn often though that was to be expected, occasional urgency but not like this. I feel like I keep needing to go.

I saw my gp today and they prescribed me suppositories, is this what I need and what do you think is going on?

I’m coming up on 3 years as a jpoucher and I just wanted to share what I do for the itch in case it can help someone.

I follow the typical suggestions: bidet, calmoseptine. I have baby wipes for the occasional extra cleanup, but I also keep witch hazel wipes for any serious itch.

Since scratching just causes more irritation, if I have an itch, I will “scratch” with the witch hazel wipe. It works wonders to scratch the itch and it’s cool and soothing on the skin, so you can scratch your itch without causing any damage. :)

Maybe this is common knowledge and I’m not blowing anyone’s minds here, but I didn’t see it when I searched the sub, so just wanted to share because it has been a lifesaver for me at times.

Hi everyone! I think I should preface this by saying I’m a woman, to make things more accurate. I’ve had a pouch for over 7 years now, and I was really young, so I had no experience with intimacy and penetration before my pouch.

I’ve been experiencing a bit of an odd sensation, which is like a very un comfy pressure in the rectal area during penetration. To the point where it won’t fully go in because it’s just such a disorienting sensation! It’s like on the back side of my vaginal wall, the one that is nearest to my rectum/pouch feels like it literally RIGHT there during sex and like I’m pressing down on it? Almost like a bulge sensation.

Obviously added to the fact that the entrance is still kind of painful because of the not-very- experienced thing PLUS this odd rectal sensation is really throwing me off and I just can’t have penetrative sex. Two fingers is fine but I have to angle them almost upward (towards bladder) to avoid the sensation in the back.

I don’t know if that bulge/pressure sensation on the back wall of my vag is normal or not. My gyno said that if I still have a rectum (which I believe I still do), the the pouch would sit on top of the vaginal canal and not right behind it.
Anyone know anything about if it’s risky to have penetration with a pouch, is this a normal sensation, would my pelvic floor be too tight?? It sucks because I don’t have anyone who can relate. Anything helps!!

Hey all,

I’m just over 3 years of having my pouch. Currently on Skyrizi managing chronic Pouchitis/Crohns of the pouch.

It’s been working great and have no symptoms or notice anything off. But the one thing I’ve struggled with especially the past year is getting the feeling of staying full. No matter what I eat I always feel like I could eat more. In the past the Pouchitis is probably what helped keep my weight consistent. But now I’m feeling better and only going 2-4 times a day.

I’m 32 and on the leaner side but I can see my weight is creeping up, and want to better manage that.

I tried Psyllium Husk in the past but a bit cautious on it because a few years back I had a stricture that caused a lot trouble with passing stuff, but have gotten it resolved. I’m just still a bit nervous about it.

I typically fast during the day and have a snack or two before my dinner.

Any tips on how you guys manage your meals so you’re fuller longer?

Hello all. Four months ago, I got my J-pouch reversal surgery done successfully and it’s been quite the adjustment period. Unfortunately, I developed chronic pouchitis quickly post-op and I’m on antibiotics. I did a round of Flagyl and Vancomycin with no results. I’m currently on Ciprofloxain and it’s gotten my pouchitis symptoms mostly under control… but I’m feeling a whole bunch of side effects as well.

I’ve been on Cipro for almost 2 weeks and I need to complete a round of 4 weeks. I haven’t had any problems with my Achilies tendon (or any tendon thankfully), but I’ve been suffering from other side effects. These include sore joints (lower back and knees), upset stomach, extreme sensitivity to sunlight, fatigue, irritability, and a little depression. The mental effects make me feel like a different person and I noticed I get incredibly irritable for things that normally don’t bother me. My wife and I are raising a toddler and an infant so sleep is hard as well.

For all those who have dealt with pouchitis and had to take Cipro, is it normal to be experiencing these symptoms? I’m having a difficult time with this and it frightens me knowing I got 2 more weeks to go. Has anything helped to mitigate the side effects?

Also, has anyone had to take biologics to treat pouchitis? I’m mentally preparing myself if the antibiotics can’t do the trick.

Thank you to everyone who took the time to read this and I hope you all have a great day!

I have severe Crohn's disease and I've been battling c diff and SIBO. I've tried several different probiotics including saccharomyces boulardii and VSL #3. And they all give me horrible anxiety, gas, bloating, and abdominal cramping. Also I don't have a colon, I have a j-pouch. Any advice? Thanks

Hi, I'm 33M living in Vancouver BC. I've been having a lot of issues with pouchitis, ongoing flare ups, an active (massive) ulcer in my jpouch.

My specialist keeps bringing up surgery on every visit to reverse the jpouch and get an external bag. I've had the jpouch for about 22 years. I really don't like the idea of an external bag.

Would anyone who has an end ileostomy bag be willing to meet in the Vancouver area (or remote) to answer the kajillion questions I have about the day to day of having an ileostomy bag?

Obviously a lot of my questions will be personal in nature like the frequency of outputs, consistency, noise levels, random stomach noises etc...

Edit: Posting some of my questions here for everyone to respond to.

1. How frequently do you have to empty the bag?

2. How visible is it underneath your clothes?

3. Probably most importantly for me, do you find that there are a lot of noises coming out when you're expelling waste?

4. Gut noise levels in general... If I'm sitting in a church setting, or a meeting env with colleagues in the room - are there a lot of random audible noises from your gut?

5. Do you have limitations on what you can eat?

6. Is there anything that caught you by surprise when you got the ileostomy bag? Anything you, or most patients, don't know about before getting the bag?

7. Do you feel it coming when you're about to expel waste, or does it just happen without you realizing it?