I had a partial obstruction recently and agree the pain is terrifying.

I've heard ileal pouch surgeons who specialize in repairs say they see a lot of twisting pouches that need fixing recently, probably a result of how surgery was done in the first place, perhaps more common with laparoscopic surgery and related to experience level of the surgeon.  Not sure if you're describing the same issue.  But it does sound as if  you might be best off contacting one of the centers that specialize in ileal pouch repair for a second opinion. If you're in the States,  it's sometimes possible to do this as a telemedicine consultation depending upon where you are and what state  the surgeon is.   Where did you have your surgery initially and where are you now?  

Hate to say it, but it sounds like you need surgery again. Twisted intestines are dangerous and can cut off blood supply to the area. I would seek advice from a trusted surgeon sooner rather than later.

Gayla, I went through the same as you. I had emergency surgery in September for blockages and twisted gut. The twists were in three places. I had intense pain for 16 + hours and stayed home trying to tough it out, stupidly, before I emailed my surgeon and he old me to get myself to emergency now. By then I was in such pain sweat was dripping from my face and I was moaning out loud. I went thinking I would just get IV fluids, but they had me in the OR before I knew it. They said my gut blood supply was cutting off. Strange because just before surgery the pain stopped so I thought surgery was so unnecessary. They knew differently. I think that section was already being cut off from blood supply, hence no feeling of pain. Or maybe I was just delirious by then. If you have intense pain, no gas passing, no stool, and/or vomiting, don’t think about being tough, just go to emergency. If something happens to you at least you’ll be in a medical surrounding, not at home passing out.

The surgeon cut me open in the same place as my two step pouch creation and I was sad about that because I had healed almost completely and the scar was fading. Woke up to a massive, much longer scar 12 inches long. Sigh. I was recovering okay in hospital but three days later when I started on hospital solid food another obstruction developed with acid reflux. The pain was so bad I begged for the NG tube to get some relief. The NG tube sucked out two litres of stuff too awful to write. I had the tube for five days. No food or water, only ice ships allowed, and not many of those, they limit ice chips so it doesn’t disturb what is being removed via the tube.  Was discharged, came home, ate some scrambled egg toast and within 24 hours I was back in emergency with another obstruction. Another NG use inserted for four days. All my veins exploded and not even a specialist IV nurse could find a vein.

A third obstruction occurred a week later at home. Back to emergency, but this time no tube was needed. The blockage passed itself while I was sitting in emergency, with a sharp POP and sharp pain like something moving fast through my gut.the pain stopped instantly. I knew the thing had made it’s way out toward my pouch, and it did pass 20 minutes later in a liquid bowel movement. I had been sitting in emergency, rocking back and forth in desperate pain, rocking and standing up and I think this made the blockage pass. The doctors don’t know why blockages kept occurring, some within days of the last one. They put it down to the gut being slow to wake up from surgery and pain management (hydromorphone). But I could tell they were at a loss for specific answers. I was terrified, like you are, of another painful blockage and surgery. Chew everything carefully, walk a lot. I went walking for blocks and blocks every morning, rain or shine. I was stressed out thinking every morsel would bring an obstruction. But it didn’t. My gut settled down after three obstructions. The walking helped keep things moving. After each meal, I would march in place vigorously for 15 minutes, without fail.

As for food, for three months I only ate mac and cheese with broiled chicken, and jello. Fish a few times a week, salmon, cod with olive oil, salt, pepper and put under the toaster oven broiler for 12 minutes at 300F. Fish cooks very very quickly this way because it’s thin and delicate, so keep a close eye on it.  You won’t eat it if it’s over cooked. I did not eat any vegetables for three months. But his weekend I simmered greens and veg in a broth (you can also use plain water), adding aromatics such as fresh garlic cloves, an inch of fresh ginger sliced, bunch of coriander, anything green throw it in the pot. Boil and then simmer and eat the veg. Drink the precious flavourful broth for the potassium and hydration. I was allowed fruit, but NOT THE SKIN. Vegetables such as zucchini is allowed for the soluble fibre, but the skin must be peeled before cooking. No fruit or vegetable *skin* ever again. No raw salads, no raw foods period. Chew very well, especially meat. These instructions came from the hospital dietician who met me several times to discuss, and from my pouch surgeon. They also gave me a complete printed list at discharge which I followed to the letter. No blockages since October when it popped in the emerg.

However, eating only pasta and chicken with no veg, took a toll and I started losing my hair. I was lacking in proper nutrition. Noticed it in mid December at the three month mark after surgery. Very distressing. I’ve started eating cooked veg again every day and taking 10,000 mcg of Biotin to see if that will help. I’ve read and heard that the anesthesia used during surgery can cause hair fallout months later and most people don’t attribute it to their surgery. So maybe keep this in mind if you notice hair issues. Maybe Jan, the moderator here, and is a nurse, has insight into this?  I hope you continue to improve, Gayla.

Yup, I’ve been diagonised with floppy pouch complex. Redundant loop aka long bowel keeps flipping on itself. After 4 surgeries last year not working I’m going next week for a bowel resection. Oh joy!

So floppy bowel complex is a thing. I have never heard of this until now. The general surgeon isn’t familiar enough with the Jpouch. I wonder if it’s time for a bowel resection. I wish my general surgeon could have done that in May when he opened me up just to correct the blockage. Basically he milked my intestines😱 I have been so scared that an ostomy bag would be my only option.  Thank you all so much for your time you spent in replying to my message.

Gayla, maybe it’s time for your family doctor to refer you to a specialist to look after you long term. Not a general surgeon. You want someone who has done many j pouch surgeries and repairs.

Had blockage from scar tissue at joined areas. Surgeon went in a few times and trimmed it up till I could live normal.. Basic overview

This happened to me a year after I had my take down. It started as a sharp pain in my left groin and then I couldn’t stop throwing up. I went to ER, the scanned me and I went into emergency surgery to correct my twisted small intestine. My surgeon told me that had a come. Even a day later I would’ve lost my couch because the tissue was dying. It had turned black. Luckily it was a successful surgery. I’ve had about two blocks since, one of which was found and I didn’t know because I didn’t have pain. They can’t get my continual pouchitis under control. In my opinion, in my circumstance, I would rather have the pain from a twisted Intestine rather than continual, daily pain from poichitis. They’ve tried everything on me. I’ve only had one week of evacuation that resemble stool. All other weeks I’ve had pouchitis and when I evacuate it’s either bright yellow bile or completely water. Most of the time when I eat anything it shows back up in the toilet in its original form.  It sucks to not feel good all the time, but I’m glad my w-pouch hasn’t failed.

Never had resection. Diagnosis floppy bowel now in question? It is a real pouch problem though. The first twist and internal hernia were a separate issue that are holding.
this is new issue found.
I had a internal hernia with bowel looped around pouch from a menestry (spelling?) defect from original surgery 23 years ago. I mean 23 years, really? And not one test showed this and I’ve had many!