Tips for managing chronic Small Bowel Obstructions

Hello @jljacoby and welcome to Mayo Connect,

I appreciate your post about Small Bowel Obstruction. Many Connect members have had surgeries of the small bowel and we all share your frustration about eating and managing this problem. Here is a discussion on Connect where you might find some support and new ideas. Just click on the link, https://connect.mayoclinic.org/discussion/permanent-sibo-due-to-removal-of-ileocecal-valve/?orderby=DESC#chv4-comment-stream-header.

Also, please take a look at this discussion, https://connect.mayoclinic.org/discussion/chronic-small-bowel-obstruction-from-adhesions/?orderby=DESC#chv4-comment-stream-header. I would like to invite two Members of this group to this discussion, @thull and @nancybev. These members have both posted about their experiences with adhesions and diet. I think you will find their comments most helpful.

I have had three surgeries of the duodenal bulb for NETs (neuroendocrine tumors, a rare form of malignancy). While I can eat solid foods, I adhere to many of the same dietary restrictions you have mentioned. Keeping liquids primary with soups, vegetable juices, etc. the primary part of my diet and water and exercise to help as well.

Most of us in this situation do resort to high protein liquids, smoothies, etc. If you have any problem with glucose (diabetic or prediabetic) there are products on the market with very low carbs/sugars . Atkins makes a ready made shake that is of that variety (2 grams of net carbs and 1 gram of sugar) and there are probably others on the market as well.

This is a difficult problem, no doubt. It sounds like you are doing all of the right things, including diet, liquids and exercise. I have found the gentle movements of Tai-Chi to be especially helpful. Do you practice any particular type of exercise to help?

In addition to liquids, what other food choices work well for you? Do you also try bed rest when you are in a flare-up? Have any meds been tried to deal with the pain when you experience a flare-up?

Thank you @hopeful33250 I will look at those threads!
I was a runner until my second surgery earlier this year, unfortunately I haven't had the energy to pick it back up so I mostly just walk and do light weights.
As far as foods I can tolerate eggs and yogurt but that's about it in the way of actual food. It seems like anytime I try to add in other foods I end up in severe pain. I stick to protein smoothies and ensure drinks for the most part. It is just hard to go from eating like a normal person (as I refer to it) to essentially drinking all my meals. I'm only 35 and I cannot imagine this as my only food sources for the rest of my life!!
When I'm in the throes of an early SBO I have to take to my bed with pain meds, nausea meds, and a heating pad. Sometimes that isn't enough which is usually when I end up in the ER. Thing is, I need to figure out how to manage this before the ER visits become to frequent. For example I am out of vacation time, have used up my FMLA until August 2019, and am worried about losing my job if I continue to miss time. It really sucks!!

@hopeful33250 , how are you doing, by the way? You're always looking out for the rest of us, but it sounds as if you're dealing with a whole lot as well.

Thanks for asking, @nancybev. I'm doing OK, need to have an upper endoscopy the first of the year in order to make sure there are no more NETs in the duodenal bulb. Unfortunately, that always produces worry and concern, but that too will pass! There are always other considerations, right now dealing with prediabetes as well and trying to watch my sugars and carbs but not wanting to lose weight. It is quite a balancing act, isn't it?

@hopeful33250 , that is a serious balancing act, considering that you need to take sugars, carbs, and your weight into serious consideration on top of everything else! You always seem to have such a warm and caring attitude.
Sending my best wishes, both for good results on the endoscopy, as well as a wonderful holiday season. Please keep us posted, if you want to!

Hello @jljacoby and welcome to Mayo Connect,

I appreciate your post about Small Bowel Obstruction. Many Connect members have had surgeries of the small bowel and we all share your frustration about eating and managing this problem. Here is a discussion on Connect where you might find some support and new ideas. Just click on the link, https://connect.mayoclinic.org/discussion/permanent-sibo-due-to-removal-of-ileocecal-valve/?orderby=DESC#chv4-comment-stream-header.

Also, please take a look at this discussion, https://connect.mayoclinic.org/discussion/chronic-small-bowel-obstruction-from-adhesions/?orderby=DESC#chv4-comment-stream-header. I would like to invite two Members of this group to this discussion, @thull and @nancybev. These members have both posted about their experiences with adhesions and diet. I think you will find their comments most helpful.

I have had three surgeries of the duodenal bulb for NETs (neuroendocrine tumors, a rare form of malignancy). While I can eat solid foods, I adhere to many of the same dietary restrictions you have mentioned. Keeping liquids primary with soups, vegetable juices, etc. the primary part of my diet and water and exercise to help as well.

Most of us in this situation do resort to high protein liquids, smoothies, etc. If you have any problem with glucose (diabetic or prediabetic) there are products on the market with very low carbs/sugars . Atkins makes a ready made shake that is of that variety (2 grams of net carbs and 1 gram of sugar) and there are probably others on the market as well.

This is a difficult problem, no doubt. It sounds like you are doing all of the right things, including diet, liquids and exercise. I have found the gentle movements of Tai-Chi to be especially helpful. Do you practice any particular type of exercise to help?

In addition to liquids, what other food choices work well for you? Do you also try bed rest when you are in a flare-up? Have any meds been tried to deal with the pain when you experience a flare-up?

When I was dealing with the obstruction due to the adhesions, I found that lying in bed and doing gentle abdominal massage seemed to help. Everything started clearing and now they have had me on this low residue/low fiber diet. The down side is it has made it more difficult to go to the bathroom, and most likely the cause of diverticuli throughout my entire colon and not just in the small amount of sigmoid I have left after my surgery. It seems to have worsened after the colonoscopy and I ended back in the ER after Thanksgiving with diverticulitis. Was on clear liquids for days, plus antibiotics. That seems to have resolved, but now having trouble going to the bathroom again. I have not been eating much though, so I am not sure how much is actually there. The dietician told me to start with some oatmeal, more peeled fruit and drinking prune juice. I am also drinking more water and the smooth move tea. Most days, I stick with the Ensure or Boost to get some calories in.The Dr is not going to be happy with my weight the next time I am in. They want me close to 110(I am 5'6"), but this morning I was back down to 99 lbs.😧. It sure is hard to eat when your belly hurts. I am thankful that there is no nausea or vomiting, so it all seems to be large intestine vs when I had the SBO and was throwing up green bile! I wonder if the scar tissue at the surgery site where they reconnected my plumbing is causing a motility issue in that section and why it got worse after the colonoscopy. I literally feel like a lump in my lower left quadrant when I need to go. Weird! I hope everybody is able to enjoy the holidays to the best of their abilities and here's to NO Hospital visits for any of us!