Tips for managing chronic Small Bowel Obstructions

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.

@thull (and others), I just now came across this article on diverticulitis in the NY Times. Maybe it's all stuff you already know, but I thought you might want to take a look at it, and the comments section:
https://www.nytimes.com/2019/01/04/well/live/can-i-ever-recover-from-diverticulitis.html?action=click&module=Discovery&pgtype=Homepage

Out of the hospital after 6 days. Surgery was a success, but ended up more extensive than I anticipated. They started laparoscopic but knew right after they got in they would have to open me back up. They had a urologic surgeon go in and put stents in my ureters as a protective measure. I guess they can get caught up and injured during this type of surgery. Then they spent a good deal of time removing adhesions before they could actually work on the bowel. Surgeon ended up doing a Deloyer Procedure, which removed colon all the way into transverse, then they flip it around to my right side and the transverse becomes my new descending attached at the rectum and it lays right next to my ascending. My son in law, who is an engineer, found a YouTube video of the procedure and declared it "quite wicked"🤣. In total, the surgery took almost 7 hours. They accidently perforated the small bowel during and had to repair that as well. Old scar was removed and new one is actually thinner and will look better once healed , I think. Maybe not bikini ready, but close! Haha. Have me on tramadol for pain, but only for a few days. Not sure if I like it, although it helps with pain, it is actually disturbing my sleep. They have me on a soft, low fiber diet until my follow up which should be in a couple of weeks. Just trying to rest and heal and also deal with my unrinary tract being infected and irritated due to the catheter. It has taken being home and not on so many fluids and meds for my appetite to start coming back, albeit very slowly.

I so appreciate your update, @thull, and I'm glad that you are home now! I am sorry to hear of the very long surgery and recovery period, but it does sound as if your doctors were quite busy and did a lot of repair work.

I am pleased to hear that your appetite is coming back now that you are home and on a more reasonable schedule. That certainly helps. When do you have a follow up with your surgeon?

With a weekend discharge, they said the appt schedule desk will call me this week. The appointment is supposed to be 2 weeks or so from now. They did all internal stitches, so nothing to remove.

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?

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!!

Hi! I just joined the group and I immedidiately saw myself in your life experiences with Cabo. As a 37 year old women that has dealt with a lifetime of intestinal issues resulting in many surgeries and more SBO then I can keep up with. I too have had to stop running and other strenuous activity due to lack of enough caloric intake to maintain my weight. I mainly eat very soft foods and liquids like ensure and smoothies. Between the chronic pain and chronic nausea I struggle just to function. I was unable to have children and I had to accept that I can’t work a few years ago.
The nausea really frustrates me because I can’t seem to find any medication that works or if it does work it doesn’t always and can take hours to start helping. Do you have any suggestions? Or if anyone has had any luck with anything I’d really appreciate your advice.

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?