I have had three blockages which have required hospitalization over the past three years. Prior to that it had been probably five plus years since I’d been in. Now I’ve got another one two weeks after discharge. Assuming it is due to adhesions. Has anyone gotten surgery to take out adhesions? Wondering if this is where I’m headed. If you did get surgery were they able to do it laparoscopically?
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I am sorry for everything you are going through, blockage prevention that I do: Drinking water before, during, and after every meal. Moving around after each meal. Chewing like crazy before you swallow.
HappyTimes, hope there has been progress in resolution of your blockages by now.
I am 13 years post Colectomy w/Jpouch from UC. I have gotten partial blockages off and on through years but they always resolved (with massaging) and on their own thank God.
However, now there is constant pain and more blockages due to adhesions on outside of small intestines.
I have EDS hyper mobility which is linked to numerous continued issues with my GI tract, including bleeding in stomach, over dilation of my pouch, strictures in GI tract, abnormal scar tissues etc so yes they would do best to minimize more scarring by removing adhesions in abdominal cavity by doing it laparoscopically. I am curious if you have had it done yet and how it went? At some point soon, I believe the daily pain and blockages will require laparoscopic surgery for me. Best wishes.
I have had a jpouch since 2009. I just spent six days in the hospital for my 1st severe blockage. I have felt it before but was always able to resolve itself with water and massaging the area a little (pushing like hell in my intestine really where it felt clogged). But they said it was nothing I did and I am getting scoped tomorrow to see what it looks like after a few weeks on Steriods and a couple on Flagyl. It was extremely painful at times and the hospital stay, well those are never good. The biggest mistake I made was going to a local GI instead of my state of the art Mass Gen/Brigham and Womens doctor who is one of the best literally.
I am back with him now never to go "local" again. He said you need to get scoped every year so this does not happen. Last scope was years ago and my local doctor didn't see why I needed one every year. He also told me after not coming to the hospital or answering my calls for 2 weeks that he knows nothing about jpouches and can't help me after 6 years with him. Lesson learned, get regular scopes, you do not want to go through it trust me, no fun at all.
Loved your advice PSJ! I recently was hospitalized for 5 days with a total blockage and my doctor was GI, but after reading this blog I also feel that I need a Pouch specialist!! They are just not knowledgeable about the specifics. I have had my j-pouch since 1991 and I had never had a scope and I think it is important. I have learned that the collar can still become cancerous bc it is still colon tissue.
Thank you for your info!
I've had a j pouch since 2008 and had my first partial blockage on May 8, 2021. This was an awful and traumatic experience. I had to be transferred via helicopter to another hospital. During my hospital stay they put an ng tube that was hurting my throat and ear. They had to give me antibiotics to prevent infection. Not to mention the constant poking of my veins for the lab works. I have very fragile veins. Each day was torture until I had my surgery on the 13. I had open surgery because the surgeon said a blockage cannot be fixed by laparoscopy. I pray that I don't get another blockage. Total colectomy in 2008. Take down 2009
Unhappy, very sorry to hear this. I was lucky enough to avoid that but it was on the table until the very last minute everything started moving. I walked A LOT at the hospital because they tell you it helps. I was not allowed to eat or drink anything but an occasional ice chip.
Those NG tubes are not fun either but after the 5th one I had it down pretty good. The one in the ER looped in the back of my throat, the next one came out when I vomited, the next one I think fell out, the next I accidentally pulled out then they had to reposition it like 2-3 times and every time they Xrayed me to make sure it was right, but it wasn't until the last Xray and repositioning.
I am with you I never want to go through that again but you had it much worse with surgery. Hang in there it gets better!
Good to know Scott but it seems I was "lucky" in that the blockage was due to inflamation that steriods and Flagyl seem to have fixed so far. Everything looked much better yesterday on my scope. I hope it stays but I will be much more aware of what I eat from now on.
PSJ: I am kind of in the same situation with my J Pouch inlet stricture. I have the big black blockage cloud hanging over my head, and am relying on Remicade and Entocort to keep the inflammation down at the stricture site so that food can pass. The truth is that I have been strictured in that area for a while, and no blockages so far. I did have around 4 blockages right after surgery due to adhesions and/or surgical swelling including the dreaded NG tubes and the usual "fun and games". My next dilation is October 27 and at that time we will see if the introduction of Entocort just over a month ago brought about any progress.
I did have a scary moment the other day when I started feeling some sharp crampy pain in my lower abdomen and was worried it was the start of a blockage. But then I let out a sudden huge, loud, prolonged fart, immediately felt better, and realized it was just gas. That experience has kept me on my toes.
I had surgery last week. They had to go in for other reasons as well (phantom gallbladder pains that turned out to be stones, inflamation and infection in the common bile duct) and a cyst by the liver. While my surgeon was in there he inspected my historic occlusion site (an old colostomy site) that tends to build adhesions and block me. There were some so he zapped them and he found a new site, just below my liver that had adhesed a loop of bowel to my liver...everything was done through laparoscopy...yea! In and out in 2 days, a liquid then soft diet with 72hrs...and now I am careful but doing fine...praise for any surgeon who has enough skill not to open me up!
This has happened before, the last time that he had to go in and liberate blockages and adhesions was December 2014...I am fine with it if he only needs to do this ever 7-10 yrs. So much better than living with a knife hanging over my head...and the terror of occlusions.