Tips for managing chronic Small Bowel Obstructions

I had 3 bowel obstructions requiring hospitalization from April to September. Have had several tests such as colonoscopy, CT Enterography, normal CT scans, and exploratory surgery after the 2nd obstruction. They (GI Specialists) cannot find out what the cause is. They wanted to have me swallow the camera pill but it was too big for me to swallow. They now have me on 2 new prescriptions. The second one makes me feel naucious several times a week. I lost 20 pounds since March but am now ok with my weight staying where it is. I was drinking Ensure pretty well every day until my weight stabilized. One thing I do not eat is popcorn and most nuts. Otherwise, the doctors said to eat whatever I want (as they don't know what is causing this). My dinner meals are definitely smaller. I find that any alcoholic drinks make me not feel well so have cut down a on those. My husband and I are avid travellers but since this started I have had to cancel 3 trips. The last visit to the GI specialist he told me they are "frustrated". Wish they could do more for me but even hard for me to get a follow up appointment as they are so busy.

My husband was diagnosed with Crohn's disease. He has now been doing a infusion every 8 weeks of Entyvio. Has not had any blockages for a year. Occasionally he will feel like it might be starting, at that time he will eat well cooked carrots for a couple of days. Then so far he's better.

I feel you I have been through all those tests too they didn't find anything but pre cancerous polyps and removed them I just was discharged from hospital after my first small bowel obstruction! I still have no answers! Very frustrating!

I apologize is if this is too long but it does seem from other posts that going into detail seems to help because of all the surgeries.

This is really taking a mental toll on me and my spouse. How do couples deal with chronic conditions like this? It gets hard to live without fretting every GI symptom is a new ASBO versus middle aged indigestion.

I've been dealing with these ASBOs (I know what it means in Britain and cracks me up) for nearly 14-15 years now. I've been hospitalized maybe 9 times, possibly more but it's hard to recall.
The reason I have them is because I was born 3 months premature in the early 1980s and had to have some sort of intestinal surgeries involving a temporary ileostomy. After three months the stoma failed somehow and my small intestine went out the stoma and into the world. So there was a lot of handling which led to adhesions forming. I have a very large transverse scar across my abdomen below the stomach as a result with a scar over the former ostomy (had to have a hernia repair in 1995 because they didn't put mesh in 81.)

After the first three attacks in the late 2000s, the surgeon resected six inches of small intestine, removed scar tissues, and applied biofilm. I had a few minor attacks over the years but in the last 12 months I have been hospitalized four times, April, late September, early October which resulted in an open laparotomy and an incision from stomach to bladder, and I just got out of the hospital late Wednesday night without surgery. In all these cases I have to have the (unprintable) nasogastric tube placed, and I have medical flashbacks now.

Idiot me badly strained the incision in late November so I have some fun painful lumpy spots down the incision and a suture came out through a small not-quite healing scab on the new scar itself. The bloating and distention has caused a couple more of them but as long as they don't abscess or get infected I'm not going to worry.

This is no way to live. I'm trying some dietary changes like Metamucil and avoiding spicy foods that make me cramp, and eating and drinking slower and smaller amounts throughout the day. Thankfully my labs are good so I don't need to manage cholesterol, sugar, or sodium intakes in any special way.

So I guess what I really need is advice on mentally managing all of this not just for me but also for my wife.

I deeply appreciate anyone who got through this novelette.
Libran Indecision

I am so sorry you are having to go through all of this. I am new to ASBO and am struggling with the fears and anxieties. Keeping track of everything I eat, every bowel movement or gas I pass. I get scared when I do not have bowel movements or gas and thank God Everytime I do. I am currently scheduled to go see a GI doctor at the mayo clinic and then I can start seeing a dietician. I work in behavioral health and have found that the support here in these groups is the best help I can get through this. It eases my mind to know I am not alone and to learn about others experiences and how they are coping. In my opinion. It is about learning how to live with it, looking at menus before we go eat, turning down invites to places we know we can not eat at and just monitoring everything, keeping a daily journal and of course reach out for help and support.

I am writing this post to hopefully get advice. i have been dealing with eating, digestive issues, and not being able to keep much food down for most of my life. I'm 65 so that is a long time. my issue with the bowel obstruction started in October with severe pain and throwing up. Finally, it got so bad that I passed out and the paramedics were called. went to the ER and diagnosed with SBO caused from an ectopic pregnancy and multiple adhesions and endometriosis. That was removed 2 days later and stayed in hospital for 15 days. everything was good, got out of the hospital for 4 days and the same thing happened. Back to the hospital. Had a NG tube and the obstruction passed. Everything was good for about a month but now the throwing up, not being able to keep much food down and the horrible bad fecal/bile breath. It kind of just comes out all thru my body. Had a CTA scan 2 weeks ago, that showed no blockage and now waiting for endoscopy scheduled for April. Has anyone else experienced these episodes or symptoms, and if so PLEASE give me advice on ways to help these issues. My husband wants to bring me to The Mayo Clinic, thoughts-advice? Thanks Kim!

@dstaley1
I really think your husband has provided you with the best advice you can get.
The only thing I can tell you from experience is I also had endometriosis, but because I was only 28 doctors weren't keen on just taking everything out. They took my uterus on Nov. 15, 1978, my left ovary in Dec., 1978, and my right ovary the second week of January, 1979.
I am one of those lucky individuals who grow scar tissue for a hobby. I hadn't had so much as my tonsils removed before this. Afterwards, trouble with abdominal pain brought be a referral to a gastroenterologist, who told me that because of all the abdominal surgeries I have massive scar tissue, and that scar tissue would end up wrapping around my intestines unless I keep them pliable by walking.
Weather permitting, I have walked 4 miles a day ever since. Thus far, at 75, those adhesions never wrapped around my intestines. I found it most interesting that in Europe they use something that they wash the area where they have done surgery to prevent adhesions, but the U.S. will not approve it.
Again, find it interesting that dyes were banned in food in Europe 30-40 years ago. U.S. just now!!!

Did your doctor advise you to follow a low residue diet? This exact same thing happened to me when I first started having obstructions in the early 2000s and after I was decompressed by Ng tube and blockage resolved, I wasn't given any dietary advice and it kept happening. Once I was informed about it, the obstructions stopped.

Thanks so much for this important information! You sound like a very tough lady! We walked almost a mile today which is the most since surgery 🙂 It's been a tough road, but hopefully things will improve soon! I will take your advice and continue this regime.

Yes, I've been on the low residue diet, however I'm down to 69 pounds and continue to throw up after meals plus the breath has gotten very bad. We're hopeful our local GI will hurry and diagnose and find a solution. If not, my husband wants to get me into The Mayo Clinic. This is no way to live!