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jljacoby
@jljacoby

Posts: 6
Joined: Dec 10, 2018

Tips for managing chronic Small Bowel Obstructions

Posted by @jljacoby, Dec 10, 2018

Hey everybody!
I joined this group hoping to find tips for managing recurrent/chronic SBOs. I had a Ladd's procedure at 4 days old which left me with scar tissue.
I started having partial SBOs at 25 but they went misdiagnosed as biliary colic because my anatomy is weird so I presented with RUQ pain mimicking gallbladder issues.
Last year in March I was diagnosed with a closed loop bowel obstruction and had emergency surgery. They found that my intestines were adhered to my liver and gallbladder and the surgeon removed my gallbladder an resected a small portion of my small intestine. That resulted in a 21 day stay in the hospital due to post op complications.
This year in June I had yet another SBO that ultimately resulted in another surgery. My surgeon said it looked like someone had dumped super glue in my abdomen the adhesions were so bad. That surgery resulted in a 26 day hospital stay ( my bowels don't like to wake up post surgery).
I am now following a low fiber/no fiber diet, work out regularly, and drink 124 oz of water daily. I have had at least 2 SBOs since being released which were both managed with an NG. I find that eating any food sets me off and have had to stick to mostly liquids.
Any tips for how to manage this thing??
Jennifer

REPLY

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?

@hopeful33250

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?

Jump to this post

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!!

@jljacoby

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!!

Jump to this post

@jljacoby , hi, and welcome. I'm so sorry that you've had to join the SBO club–for lack of a better term, it sucks! Mine also started with surgery I had as an infant, and I've probably had well over 30 in my life.
But this is a very helpful community, and @hopeful33250 is a wondeful guide through it. I agree that it might be helpful for you to read the threads she mentioned; we recently had a discussion on diet, specifically living on liquids or mostly liquids. It's not easy, but, at least for me, if it keeps me out of the ER and makes the pain and vomiting less severe when the inevitable happens, it's well worth it. There's lots of other stuff to enjoy in life!
Good luck and keep us posted!

@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.

Liked by thull

@nancybev

@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.

Jump to this post

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

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?

Jump to this post

@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!

@nancybev

@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!

Jump to this post

Thanks for your kind words, @nancybev. Yes, I will keep you posted.

Hello @jljacoby,

I’m tagging fellow Connect members to bring them into this conversation. @nonnie1 @19630831 @ginpene05 @sita @michrn @rssanders @justjane @eddiesrp @jimmymac @ron22 @bonitav @londonmark @idnas @sickvick @kag13 @loriel59 @thull @bradleymom1967, have also shared their experiences with small bowel obstruction (SBO).

@hopeful33250

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?

Jump to this post

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!

@thull

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!

Jump to this post

Thanks for reminding me of the abdominal massage technique, @thull. I had not thought of doing that recently, but I appreciate the reminder.

I agree with you in the hope that none of us needs any hospital visits anytime soon!

Liked by thull, nancybev

Thank you @thull and @nancybev !! While I hate that anyone else is also dealing with this, it is nice to know that I'm not alone. @thull I'm sorry you are dealing with constipation issues 🙁 My surgeon put me on a bowel regimen to help with that. Basically a stool softener every day, benefiber once a day, and Miralax every 3 days. So far it seems to help. However I struggle with similar issues when I have had to use Zofran over a few days because of nausea or pain flare ups. It isn't fun.
As far as liquids go, I drink the clear therapeutic nutrition Ensures and they aren't bad but they only offer two flavors!! How do you get variety in what you do eat or drink?
I suppose, like anything, it will just take time to get used to it and then it will become routine.
Glad to know you all are here if I need you. Happy Holidays and no hospital trips for any of us!

@jljacoby

Thank you @thull and @nancybev !! While I hate that anyone else is also dealing with this, it is nice to know that I'm not alone. @thull I'm sorry you are dealing with constipation issues 🙁 My surgeon put me on a bowel regimen to help with that. Basically a stool softener every day, benefiber once a day, and Miralax every 3 days. So far it seems to help. However I struggle with similar issues when I have had to use Zofran over a few days because of nausea or pain flare ups. It isn't fun.
As far as liquids go, I drink the clear therapeutic nutrition Ensures and they aren't bad but they only offer two flavors!! How do you get variety in what you do eat or drink?
I suppose, like anything, it will just take time to get used to it and then it will become routine.
Glad to know you all are here if I need you. Happy Holidays and no hospital trips for any of us!

Jump to this post

@jljacoby , I'm glad you found this place! It can feel very lonely sometimes to deal with these stupid things.
You mentioned that you drink clear Ensures (I didn't even know they existed!). Are you limited to clear liquids at this point?

@jljacoby

Thank you @thull and @nancybev !! While I hate that anyone else is also dealing with this, it is nice to know that I'm not alone. @thull I'm sorry you are dealing with constipation issues 🙁 My surgeon put me on a bowel regimen to help with that. Basically a stool softener every day, benefiber once a day, and Miralax every 3 days. So far it seems to help. However I struggle with similar issues when I have had to use Zofran over a few days because of nausea or pain flare ups. It isn't fun.
As far as liquids go, I drink the clear therapeutic nutrition Ensures and they aren't bad but they only offer two flavors!! How do you get variety in what you do eat or drink?
I suppose, like anything, it will just take time to get used to it and then it will become routine.
Glad to know you all are here if I need you. Happy Holidays and no hospital trips for any of us!

Jump to this post

The clear Ensure isn't bad, but I agree it's too bad only the two flavors. I started taking a softener everyday and eating some higher fiber cereal to see if that helps. The next step for me will be to try the fiber supplement. Not having severe belly pain, just very difficult to go and that stresses me out because it makes my mind head to worst case scenario if you know what I mean. As far as variety, I am doing different flavors of Ensure, not all clears, and flavored waters , but as far as food goes, being super careful & boring. Lots of scrambled eggs, Mac & cheese, mashed potatos, chicken & salmon. And cookies…..I can eat cookies and chocolate! Haha

Liked by jljacoby

@nancybev

@jljacoby , I'm glad you found this place! It can feel very lonely sometimes to deal with these stupid things.
You mentioned that you drink clear Ensures (I didn't even know they existed!). Are you limited to clear liquids at this point?

Jump to this post

Not limited to clears but it is what the surgeon recommended. Higher calorie count and it has more nutrients that I am missing with my diet.

@jljacoby

Thank you @thull and @nancybev !! While I hate that anyone else is also dealing with this, it is nice to know that I'm not alone. @thull I'm sorry you are dealing with constipation issues 🙁 My surgeon put me on a bowel regimen to help with that. Basically a stool softener every day, benefiber once a day, and Miralax every 3 days. So far it seems to help. However I struggle with similar issues when I have had to use Zofran over a few days because of nausea or pain flare ups. It isn't fun.
As far as liquids go, I drink the clear therapeutic nutrition Ensures and they aren't bad but they only offer two flavors!! How do you get variety in what you do eat or drink?
I suppose, like anything, it will just take time to get used to it and then it will become routine.
Glad to know you all are here if I need you. Happy Holidays and no hospital trips for any of us!

Jump to this post

I spoke too soon about no more hospital stays. Ended up back at Mayo ER with the diverticulitis coming back with a vengeance. I was in from 12/13 to 12/20. Sent home on clear liquid diet, and will need more surgery. The previous surgical site where they did my reconnection is so narrowed by diverticulitis and scar tissue it is only about the width of a string of yarn. Only liquids can get thru. Right now surgery is scheduled for 1/18 with a colorectal surgeon at Mayo, but hoping they move it up as I feel like I am starving to death! They will remove the rest of the sigmoid and reconnect my colon above that down at my rectum. They advanced me to 1 serving a day of a full liquid, like a creamy soup or ice cream, but just had another enema with contrast yesterday and even after being on antibiotics for 3 weeks and counting, the narrow area is not any better, so it's back to just clear liquids. I have dropped another 5 pounds, down to 95. Not good.
One thing I discovered that I really like though is Boost Breeze, peach flavored. They gave it to me in the hospital and it is really good. I had to order it on Amazon, though. Could not find it in the stores.
250 calories and 9 grams of protein per 8 oz. I am trying to get in 4 a day along with broth, jello etc. As much as I am not looking forward to more surgery(this will be #4 in a year), I am ready for this to be over with. I am dreaming about eating food. Christmas was extremely difficult.

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