Chronic small bowel obstruction from adhesions

Just to share my own story...I started having horrendous attacks in September of 2013. I went over two years of seeing many GI doctors and no one had an answer (was even told it could be nerves or stress!). Fast forward to November 2015 and I ended up in the hospital because the attack was so severe. They finally caught me "in" an active attack and did a CT scan. The good news was they finally knew it was "small bowel obstruction". The bad news was they told me there wasn't much to be done about it. I had 30+ abdominal radiations back in 2003. After two more years of attacks, hospital stays, NG tubes I was desperate. I was told that if I had a very severe attack that couldn't be fixed with an NG tube I would have to have emergency surgery. The problem was supposedly this could cause more adhesions and hence make me worse. The attacks were coming once a month. I finally decided to see a laparoscopic GI surgeon in NYC. He was affiliated with Mount Sinai. He was amazing**. He asked me "Why hasn't anyone tried to help you?" I broke down. He spent a lot of time talking to me. He felt there was less than 5% chance of developing new adhesions if he could succeed with laparoscopic surgery. He would know more when he actually went in. I agreed to have regular surgery IF when he looked he thought it was the only choice. Bottom line was I really couldn't do worse than I was doing. He successfully did the laparoscopic surgery and removed 4 feet of small intestine and a small amount of large intestine. I had radiation enteritis. This was 7/31/17. I cannot say that recovery was simple, but I have my life back. The trade-off is that have diarrhea most of the time, but that was happening anyway. I now am working with a GI doctor to help me with this. I avoid certain foods and he is trying some different meds to regulate me. I think I just have "short bowel' syndrome. I eat lower fat, higher carb diet. I know alcohol can be a trigger. Each person is different. I'm also a vegetarian /vegan. My diet is probably 60/40. Anyway, I hope this helps anyone who is suffering. **I have to say this particular doctor didn't take insurance. We paid up front and I ended up getting about 60% back from my insurance company as I had a PPO. Worth every cent.

Just to share my own story...I started having horrendous attacks in September of 2013. I went over two years of seeing many GI doctors and no one had an answer (was even told it could be nerves or stress!). Fast forward to November 2015 and I ended up in the hospital because the attack was so severe. They finally caught me "in" an active attack and did a CT scan. The good news was they finally knew it was "small bowel obstruction". The bad news was they told me there wasn't much to be done about it. I had 30+ abdominal radiations back in 2003. After two more years of attacks, hospital stays, NG tubes I was desperate. I was told that if I had a very severe attack that couldn't be fixed with an NG tube I would have to have emergency surgery. The problem was supposedly this could cause more adhesions and hence make me worse. The attacks were coming once a month. I finally decided to see a laparoscopic GI surgeon in NYC. He was affiliated with Mount Sinai. He was amazing**. He asked me "Why hasn't anyone tried to help you?" I broke down. He spent a lot of time talking to me. He felt there was less than 5% chance of developing new adhesions if he could succeed with laparoscopic surgery. He would know more when he actually went in. I agreed to have regular surgery IF when he looked he thought it was the only choice. Bottom line was I really couldn't do worse than I was doing. He successfully did the laparoscopic surgery and removed 4 feet of small intestine and a small amount of large intestine. I had radiation enteritis. This was 7/31/17. I cannot say that recovery was simple, but I have my life back. The trade-off is that have diarrhea most of the time, but that was happening anyway. I now am working with a GI doctor to help me with this. I avoid certain foods and he is trying some different meds to regulate me. I think I just have "short bowel' syndrome. I eat lower fat, higher carb diet. I know alcohol can be a trigger. Each person is different. I'm also a vegetarian /vegan. My diet is probably 60/40. Anyway, I hope this helps anyone who is suffering. **I have to say this particular doctor didn't take insurance. We paid up front and I ended up getting about 60% back from my insurance company as I had a PPO. Worth every cent.

Just to share my own story...I started having horrendous attacks in September of 2013. I went over two years of seeing many GI doctors and no one had an answer (was even told it could be nerves or stress!). Fast forward to November 2015 and I ended up in the hospital because the attack was so severe. They finally caught me "in" an active attack and did a CT scan. The good news was they finally knew it was "small bowel obstruction". The bad news was they told me there wasn't much to be done about it. I had 30+ abdominal radiations back in 2003. After two more years of attacks, hospital stays, NG tubes I was desperate. I was told that if I had a very severe attack that couldn't be fixed with an NG tube I would have to have emergency surgery. The problem was supposedly this could cause more adhesions and hence make me worse. The attacks were coming once a month. I finally decided to see a laparoscopic GI surgeon in NYC. He was affiliated with Mount Sinai. He was amazing**. He asked me "Why hasn't anyone tried to help you?" I broke down. He spent a lot of time talking to me. He felt there was less than 5% chance of developing new adhesions if he could succeed with laparoscopic surgery. He would know more when he actually went in. I agreed to have regular surgery IF when he looked he thought it was the only choice. Bottom line was I really couldn't do worse than I was doing. He successfully did the laparoscopic surgery and removed 4 feet of small intestine and a small amount of large intestine. I had radiation enteritis. This was 7/31/17. I cannot say that recovery was simple, but I have my life back. The trade-off is that have diarrhea most of the time, but that was happening anyway. I now am working with a GI doctor to help me with this. I avoid certain foods and he is trying some different meds to regulate me. I think I just have "short bowel' syndrome. I eat lower fat, higher carb diet. I know alcohol can be a trigger. Each person is different. I'm also a vegetarian /vegan. My diet is probably 60/40. Anyway, I hope this helps anyone who is suffering. **I have to say this particular doctor didn't take insurance. We paid up front and I ended up getting about 60% back from my insurance company as I had a PPO. Worth every cent.

Hi Loriel59,

So glad I found your post. My mom frequently suffers from SBO attacks. She was hospitalized for the first time last year but has had attacks for many years. We’re trying to find treatment options. We live in NYC and was wondering if we could have the name of the Mt. Sinai doctor who performed your laparoscopic surgery. We would be more than grateful. Also, how have you been after the surgery? Any more SBO attacks? I’d really appreciate if you could reply! Thanks 🙂

I have been having bowel obstructions for almost 4 years. No one could tell me what was going on. I was getting them almost monthly. Worst pain I've ever gone through. At one point I lost 17 lbs. In October 2015 I finally ended up in the emergency room. This is when they finally found the small intestinal obstruction. The thought is that they are caused by abdominal radiation I got back in 2003-2004 for Non-Hodgkins Lymphoma.
I sometimes go 3-4 months without an attack, but that is rare. They are part of my life.
The surgeon told me that if I end up back in the hospital, it's NG tube again. If NG doesn't work its emergency surgery.
The problem with surgery is that there is a 60% chance of it creating more adhesions, hence I'd be worse off.
I try to each low fiber even though I am a vegetarian. I cook my veggies. I don't eat any raw. No corn. I peel fruit like apples. Honestly, I feel I never know what helps and what doesn't. It's beyond frustrating and not an easy way to live. I've gotten attacks on vacation (totally bedridden in Paris!). I am in horrible pain for 24-48 hours. Then I'm sick for 4-5 more days. I feel for everyone battling this.

Hello @ginpene05, and welcome to Connect,

You've been through quite a bit, and of course you must be frustrated with finding no relief!

I'd like you to meet @rssanders @jgirlatlaw @justjane @eddiesrp @jimmymac @ron22 @bonitav @wordnoid @londonmark @idnas @kag13 @loriel59, who have shared their experience with small bowel obstruction (SBO) in the following discussions, and I'm confident that they will return to share some insight with you:

Bowel obstructions caused by adhesions following abdominal surgery: http://mayocl.in/2nhtuhj
bowel obstruction: http://mayocl.in/2nPqSUg
Scar tissue surrounding organs: http://mayocl.in/2o7g2LT

Here is some information from Mayo Clinic as well: http://mayocl.in/2oJyHhJ

@ginpene05, could you tell us a bit more about the cause of these adhesions? are they scar tissue? What do you currently do to help control your symptoms?

Hello, I am on this group because my mother who is 81 has had 5 SBO's in the last 3 months which have included 3 extended hospital stays. She has had Rectal cancer and now has an ostomy. This has been such a struggle for her and we continue to look for answers on helping her manage this without hospital stays. I have noticed that several people talk about a low fiber/low residue diet which our first doctor told her was best, but now they are saying that she can eat anything she wants and it will not make a difference. Does this sound right?
We are becoming desperate for answers because of her extensive cancer surgery and 2 large hernias, surgery is not an option at this time because of the risk.

Any guidance or advice would be greatly appreciated!

Hello, I am on this group because my mother who is 81 has had 5 SBO's in the last 3 months which have included 3 extended hospital stays. She has had Rectal cancer and now has an ostomy. This has been such a struggle for her and we continue to look for answers on helping her manage this without hospital stays. I have noticed that several people talk about a low fiber/low residue diet which our first doctor told her was best, but now they are saying that she can eat anything she wants and it will not make a difference. Does this sound right?
We are becoming desperate for answers because of her extensive cancer surgery and 2 large hernias, surgery is not an option at this time because of the risk.

Any guidance or advice would be greatly appreciated!