Skip to main content

Hello, 

I've had my j-pouch for 5 years and recently starting having chronic scar tissue problems. The surgeon/GI know that there is a band of scar tissue floating around outside the upper intestine, but not obstructing. The symptoms aren't severe enough to warrant surgery, and I have had scopes/tests done that show that nothing else is wrong. My system seems to slow down/get blocked during the day (less gas than I used to have and a fair amount of distension), and after lying down for a few hours in the evening, I finally start releasing gas. The distension then goes away. Some days are worse than others.

The new status quo is pretty inconvenient and prevents me from getting much sleep because I'm constantly getting up to go to the bathroom (both gas and stool) from 10pm to 1am. I wake up feeling fine, and the cycle starts again.

Does anyone have tips on how to mitigate this type of gas? Does anyone have experience correlating these types of symptoms with stress?

VSL #3 has helped but I am hoping there is something else out there....I drink lots of water and eat no fiber (I can't, due to scar tissue). Bad days don't correlate with any particular foods. I don't eat dinner because I have a stomach emptying disorder that makes me feel nauseous if I lie down after eating.

 

Thanks, 

E

Original Post

Replies sorted oldest to newest

I have exactly the same building of gas at about 3 every day with increasing distention and discomfort.  No gas comes out through these hours.  I have had my pouch for 2 1/2 years.  This problem is fairly new; 2 months.  At about 7 p.m. I start passing gas over an hour or so and the distention subsides only to begin on the same time frame every day. I feel there is a mechanical problem behind the old ostomy; a kink or something. CT scan showed no obstruction but mentioned a soft tissue collection behind the old ostomy.  Doctor didn't seem concerned.  I hate this every day.  My diet is the same as it has been for 2 1/2 years. I take a prebiotic. Can't afford VSL3.  My surgeon is very hard to see and seems rather uninterested in my daily dilemmas.  I am awaiting a new GI.

Thanks Lauren. My appointment should be soon.  I have used probiotics with worsening of symptoms.  My efforts have failed thus far.  We'll see what this lady has to offer me. I had a bladder infection with microscopic blood still present after Amoxil in the urine to add to the mix. This is causing a different kind of abdominal pressure pain.  Very hard to sort out.  Will let you know the outcome.

@GEB56 posted:

Thanks Lauren. My appointment should be soon.  I have used probiotics with worsening of symptoms.  My efforts have failed thus far.  We'll see what this lady has to offer me. I had a bladder infection with microscopic blood still present after Amoxil in the urine to add to the mix. This is causing a different kind of abdominal pressure pain.  Very hard to sort out.  Will let you know the outcome.

I appreciate the reply and will definitely appreciate you letting me know the outcome! Keep me updated and Good luck

Hello!

I wrote this post a while ago and I’ve gotten better since then. I ended up going to the Mayo Clinic, where I was diagnosed with Bile Acid Malabsorption. It turns out I also have SIBO and I’m lactose intolerant (I took the lactose test). Bile Acid Malabsorption is underdiagnosed But relatively common.

I got better initially by taking Nortryptyline and Gabapentin to reduce nerve sensitivity in my gut. Nortryptyline had truly awful side effects but that’s not the case for everyone who takes it. There is a medication for bile acid malabsorption, but I can’t take it because it causes esophageal burns. It’s a big bummer because the medication worked very well. I took VSL#3 for years because my insurance covered it but I don’t think it made a difference.



Now I’m off Nortryptyline and just on Gabapentin at night. I take Cipro periodically for SIBO.  I changed my diet to eat less dairy, garlic, onion, fat, and sugar. That helped a lot. I’ve slowly been able to figure out what triggers the bile acid malabsorption. Stress is also a factor so I changed jobs. I know I’m having BAM symptoms when my stool is green or yellow and I have significantly more gas.

My nights are still not what they used to be, but I only have to lie down for 1-2 hours instead of 5. My GI explained that gas builds up in the body when we lie down and is processed better when we are upright or moving around during the day. So underlying conditions that cause gas are worse when we lie down.

As for scar tissue, it’s a frequent concern. I drink SO much water and cut out all fruits and vegetables from my diet. I have had much fewer issues since the change.

Let me know if you have any more questions! Hope you feel better!

@hoyasaxa27 posted:

Hello!

I wrote this post a while ago and I’ve gotten better since then. I ended up going to the Mayo Clinic, where I was diagnosed with Bile Acid Malabsorption. It turns out I also have SIBO and I’m lactose intolerant (I took the lactose test). Bile Acid Malabsorption is underdiagnosed But relatively common.

I got better initially by taking Nortryptyline and Gabapentin to reduce nerve sensitivity in my gut. Nortryptyline had truly awful side effects but that’s not the case for everyone who takes it. There is a medication for bile acid malabsorption, but I can’t take it because it causes esophageal burns. It’s a big bummer because the medication worked very well. I took VSL#3 for years because my insurance covered it but I don’t think it made a difference.



Now I’m off Nortryptyline and just on Gabapentin at night. I take Cipro periodically for SIBO.  I changed my diet to eat less dairy, garlic, onion, fat, and sugar. That helped a lot. I’ve slowly been able to figure out what triggers the bile acid malabsorption. Stress is also a factor so I changed jobs. I know I’m having BAM symptoms when my stool is green or yellow and I have significantly more gas.

My nights are still not what they used to be, but I only have to lie down for 1-2 hours instead of 5. My GI explained that gas builds up in the body when we lie down and is processed better when we are upright or moving around during the day. So underlying conditions that cause gas are worse when we lie down.

As for scar tissue, it’s a frequent concern. I drink SO much water and cut out all fruits and vegetables from my diet. I have had much fewer issues since the change.

Let me know if you have any more questions! Hope you feel better!

I am soo happy you are at peace! Thanks for letting us know

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×