I was putting my boots on when I experienced a severe twisting sensation in my lower left abdomen. It was extremely painful, and I couldn't stand up right away. For years I've had difficulties emptying my pouch due to narrowing of the inlet and outlet of the pouch, and after this episode, I couldn't empty my pouch without the help of magnesium. I've had my j-pouch for 27 years and have had surgeries for fistulas, adhesions, and abscesses. I'm afraid something happened. The area still aches and feels bruised. Has anyone else experienced the same?
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Never experienced that.
But I've had a twisted small intestine.
Put me in the hospital and had to have surgery to untwist it. It was totally blocked.
Sounds painful. But it turned the it up to 11 on the pain scale. Off the charts
No help. I know. Sorry.
Richard.
My J-Pouch twisted a few years ago. It was very painful. Nothing would pass through and I couldn’t eat anything because I would throw up. The pain was like having severe labor pains every few minutes. It took them several days to figure out what was wrong. I had to have my pouch disconnected and a temporary ileostomy to rest and heal the j-pouch. Later it was reversed and everything thing has been fine. The surgeon tacked my pouch to my spine.
Ceew,
Thank you so much for your response. I'm sorry you went through such a painful experience. I'm relieved to hear your story and know that your doctor was able to fix it. Did you have any twisting type episodes before that final event that led you to believe something might be happening?
No I did not.
You may have had a partial obstruction. Sometimes they resolve on their own. I've had them, and your description sounds just like how it feels including the achey and bruised feeling afterwards. If it was a full obstruction, the severe pain is worse and doesn't go away. Then you go to an emergency room. So glad you were able to resolve the issue yourself.
Hi Maverick,
Thanks for your response. I appreciate the input.
In my almost thirty years of having a j-pouch, I've had a lot of partial bowel obstructions, and a couple of full obstructions as well, so I know what you're talking about. This experience was different from anything I've experienced before. I definitely felt the twisting happening, especially when I was unable to stand up straight when the pain hit me. It was like the left side of my abdomen was sucked in for a few minutes before it finally released and I was able to stand up straight. So strange!
The joys of living with a j-pouch...
Take care, and thank you again!
Julie, So sorry to hear about the new kind of pain. Considering what you've been through, your response to me was very kind. Thank you.
I sure hope you don't get that horrible twisting feeling again!
O, the joy!
Welcome to my world. A twist is a emergency. You should go directly to the ER.
AllyKat,
I'm so sorry you've had to go through so much. If I experience that pain again, I will go directly to the emergency room.
Take care.
Julie
Julie, I had twisted and blocked gut in September. I believed the pain would pass and didn’t go to emergency right away. Suffered 16 or so hours, then went to emergency where a CT scan was done and was whisked into the OR in complete disbelief.
Several more blockages and vomiting green bile in the weeks following, and the NG tube inserted. Now I know better: if I experience anything near that kind of pain again — the pain made sweat drip down my face and moan aloud — I go to emergency, no hesitation. It’s better to be sitting for hours in a fully equipped medical facility than at home possibly passing out or dying. If your gut dies from lack of blood supply, they might have to cut out that section and we already have less gut to work with. After three trips to emergency in three weeks, I now keep a tote bag fully stocked and ready to grab and go to the hospital: Toothbrush, soap, washable slippers, sleeved t shirt, list of meds, prescription pills, water bottle, chargers, and my travelling bidet bottle. I learned from that first trip to the ER how unprepared I was. Hope never to need the tote bag, but it’s there in the closet, ready to go. Good luck to you.
Winterberry,
after you had surgery why does it keep coming back? I’m now in a 1 year battle although I had a good 11 years prior with lysis of adhesions.
good luck
going to the ER is the pits
Hi, AllyKat. We never got a clear answer! I had the same surgery as you, cutting away of adhesions, and untwisting my intestines, and a longer uglier scar than my j pouch scar. The third time I turned up in the emergency room the same group of doctors and interns were truly puzzled and could not come up with a definitive reason or cause. Every time, they sent me for MRI, CT scan, x ray and every machine they could shove me into. Sometimes they woke me at 3:30am to wheel me to the imaging department. Twice, they injected two litres of contrast dye into my stomach VIA THE NG TUBE! Then wheeled me for more images. So they tried!
They wanted answers too. Images showed obstruction and swelling, but there was nothing they could pin down as the reason my gut kept coming to a full stop every few days. So they said it was my bowels being slow to “wake up” after the emergency surgery. I think of it this way: first my gut had food swallowed by me getting stuck, twisting over and knotting like a nice bow, causing 16 hours of pain, then strange hands reaching in and pulling and unravelling miles of gut, then popped back in, sewn up, given morphine, then starved. What wouldn’t go into shock! So I think the surgery was a success, but the recovery was a fail.
The third time I appeared I think they had a room ready, hahaha, because I was given a bed within 3 hours, while some poor souls had been waiting in the ER for 16 hours. But a blocked bowel trumps a twisted ankle or sciatica pain every time. Luckily, the rocking and massaging that I did (thanks to poster Sharon’s good advice about jumping up and down) while waiting somehow freed the third blockage and I was only kept overnight for observation, no NG tube. They also took a sample of my stool to study and see if they could figure it out. I didn’t hear from them so I guess the stool was free of any virus or special bug. My last visit to the ER was mid October. After that I ate very little food, being very fearful. I walked a lot every morning, and I marched in place after dinner. I hardly ate breakfast or lunch.
I now watch carefully what I eat, I chew my food, and never over-eat. No nuts or seeds, not even multi grain bread. No raw vegetables; fruit but not the skin. They gave me very specific instructions and lists. I govern my food intake this way: If I think a five year old child cannot digest it, I’m not eating it either. The odd thing is I dreaded the NG tube, hearing all sorts of horror stories, but I did not gag or wretch and it did not hurt going into my nose and down into my stomach. The nurse was confident and efficient and I felt it, and it transferred to me and I didn’t fight it. Yes, it’s a strange sensation, but don’t fight it and it’s done after 8 seconds. I know because for 5 of those 8 seconds I said the F word five times. I hope this helps anyone else out there who might need an NG tube. I hope it helps you, AllyKat, but sometimes there is no concrete answer.
Yup, I’ve done everything you have done but I keep getting part blockages. I mean eating? I can have a cup of tea and go into drastic pain. Idk, I’m tired, waiting results of my yesterday scan but even the radiologist said your dealing with a moving body part and we might not get it, 😫 I’ll let you know if they find anything.
Fyi
i had a special ct scan in addition to a scope under X-ray. It seems I have a redundant menestry basically long intestine that keeps folding over itself with lack of large intestine to help hold it in place. I’m wondering if this has been the source of all my problems throughout the years. Having a resection next week after 4 surgeries to try and sew it in place. Ugg, this pouch never stops giving good luck
Thank you for the update. I'm so sorry you're going through this, but it sounds like this surgery may resolve the issue. Let's hope so! My thoughts and well wishes are with you.
https://www.j-pouch.org/topic/...1#704035977750048401 AllyKat hoping this surgery will take care of the problem.
Thanks it just never ends! 23 years already.
Turns out I had internal hernias one dated back from a defect from the original pouch surgery 23 years ago. I hope this is it. I hope you find your answers. It amazing that with modern ct scans, mri, scopes etc it can take years to find the issue.
https://www.j-pouch.org/topic/...0#704880547818120310
I’m glad they found out what the problem was and I hope it has been taken care of.
Thank you