Bowel strictures

CMB1: Thank you for posting your experience. Would you please tell me how Keifer was helpful?

I found this helpful reference regarding KEFIR:
https://health.clevelandclinic.org/benefits-of-kefir/

Hi there! I originally posted under sclerosing mesenteritis, because that seemed like a likely diagnosis for me, but it turns out the doctors are not really sure. I have a 4 cm mass in my mesentery that can be seen on CT, MRI and PET scans. It was discovered last November when I had a SBO requiring hospital admission. Attached to the mass are tethers that attach to my small intestine. About 2/3 of the proximal small intestine is involved. My local surgeons in Albuquerque New Mexico agreed that the mass could not be safely removed or even biopsied due to its location at the root of the mesentery among important blood vessels. Any attempt to remove the involved intestine would result in "short bowel syndrome" and requirement for parental feeding. A visit for a second opinion at MD Anderson in Houston, Texas had the same conclusion: "no safe widow for biopsy". Since November I have had 14 additional small bowel obstructions for a total of 15 --only 3 with hospital admissions and 12 SBOs that I handled at home enduring much pain, but eventually resolving on their own. I am making progress on knowing what to eat and what not to eat. I have to eat small amounts throughout the day while avoiding too much fiber and anything that is hard to digest. I can't eat fruits with skins, raw vegetables, popcorn, meat that is not soft and tender, etc. I also got blockages on several occasions after gardening where I was bent over for long periods. (I guess that squished my intestines,) I am not receiving any treatment since there is no diagnosis. I see an oncologist every 3 months and he thinks perhaps lymphoma may show up eventually. Lab tests and the PET scans ruled out a neuroendocrine tumor. I can sympathize a lot with those of you having small bowel blockages as I can attest that they are very painful --about a 7 or 8 on a scale of 0 to 10. I always end up vomiting several times and have no desire to eat or drink for about 36 hours, so I end up getting dehydrated. My abdomen is very distended and during a SBO it gets hard as a rock, especially on the left side where the mass is. The expanded bowel loops show up on the CT scans. The advantage of going to the ER and getting admitted to the hospital is they can give you fentanyl for the pain and IV fluids. The ng tube is a necessary evil. It seems to help even though it leaves you with a terrible sore throat. My problem with going to the hospital is they don't want to take the ng tube out and let me start on fluids as soon as I would like. They always want to know if I have "passed gas or had a bowel movement." In my case I don't ever pass gas and I won't have a bm until I start eating again. I can tell that the SBO is resolving by how I feel (reduced pain, softer abdomen, and desire to start drinking and eating). The hospital stay can last 5 to 7 days or more, whereas at home I generally get over it in 2 days, although my abdomen remains tender for several days afterward even after the blockage has resolved. My doctors have never seen a case like mine so they have not come up with a treatment plan--although steroids and tamoxifen have been suggested. However, several of my doctors think it doesn't make much sense to treat something when you don't know what it is. Anyway, the information in this forum on how other people handle small bowel blockages is helpful to me. Someone mentioned abdominal massage (gentle) and that does seem to help. Also, I often hear really loud gurgling (bowel sounds) going on so I know my intestines are struggling to do their job. It just takes time. There is no doubt that these episodes are difficult to endure --as many of you know. One good thing is that between these episodes I have no pain or bowel problems at all. I am thankful for that!

My appendix ruptured on a cruise ship in 2015. I was airlifted to the Azores for 5 hours of open surgery and sepsis. The abdominal area should never be open to the air. This causes adhesions/ strictures. Due to my weakened peritoneum, I have had 3 incisional hernia surgeries. That adds to adhesions.
I have all of the same issues listed above. There is nothing to add except surgery will only help for a few months. The adhesions can be cut out and you will feel wonderful. They will grow back worse than ever. Surgery will be performed only if the SBO cannot be cleared. They will then perform surgery to save your life.
From what I understand the surgery is difficult and tedious so doctors don’t want to do it. Eat small meals and no raw veggies as listed by others and learn to live with it. Nothing can be done. I have been to Stanford with the best and it is all the same. It is what it is.

It is very uplifting to hear from someone who struggles with these same issues of small bowel obstructions. Unlike many others who have this issue, I have never had any prior abdominal surgeries. (I still have my female organs, appendix and gall bladder and never had a hernia, so fortunately have not had to go through all that. ) My heart goes out to you for your unfortunate cruise ship experience and subsequent surgeries.
My mesentery mass just appeared out of the blue when I got the SBO in November. I knew my abdomen was getting bigger, but I just figured it was old age. (I am 77). In addition to the periodic blockages I am concerned that I have some malabsorption problems for essential vitamins and minerals due to a malfunctioning small bowel. So I am taking supplements.
I am curious to know how others manage their blockages at home or do most go to the ER? My PCP wants me to go to the hospital every time, but I have not been compliant. I do have excellent medical insurance, so cost is not an issue. But I don't want to be away from my husband that long as he has medical issues of his own. Getting old sucks! However, as you said, "It is what it is," I appreciate the helpful information from others with the same problem.

An SBO can become unbearable pain within a couple of hours. Sometimes if I lay down and stretch my intestines out it will go away. If not, head to the ED. Remember this can be life threatening. If it passes you can return home to your husband. If you get SBOs frequently, you should have alternative care in place for your husband.
If it doesn’t pass you are admitted to the hospital. They put an NG tube up your nose and into your stomach. Your abdomen is decompressed from above and drains. If in 2-3 days, that doesn’t clear it, they will perform surgery. BTW, once the NG tube is inserted, the pain goes away. No eating or drinking while the NG tube is in, only ice chips and water to take meds.

You are absolutely right about laying down on a bed at home being more comfortable than sitting in a chair in an Emergency Room waiting area. The problem locally is that our emergency rooms are slammed. Last November (my first episode) the emergency room was full of sick people. The hospital had no beds due to people hospitalized for covid and other respiratory viruses. They gave me the option of going to my car (away from all the other sick people) to lay down for a couple of hours waiting my turn, which I did (with emesis basin in hand). Even at MD Anderson I had to sit for a long time in the ER on an uncomfortable chair. I finally asked if I could lie down on the floor somewhere, whereupon they gave me a place to lie down and soon got me into a room. They can't insert the ng tube until a room is available with a hookup to suction. By the way for me the pain does not immediately go away when the ng tube is inserted. It takes a while. They are willing to give me IV medication for the pain, but unfortunately that slows down the intestines. Ironic! I believe I need to be more assertive in the future (hopefully in a nice way) and ask for an IV immediately for hydration and a place to lie down until medical personnel can assess me.

Once admitted, the hospitalists rely on the surgery department to call all the shots (as to when the ng tube can come out, when oral liquids and food can be started , and when a patient can be discharged). The surgeons take a very conservative approach which requires many inpatient days. I get frustrated at the delay and want to get out of the hospital as soon as I feel the blockage is resolving--usually in 36 to 48 hours. A nurse suggested that for the future I could enter into my advance directive document the specific treatment i would like for my bowel obstructions. I am going to give that a try. Going without any food for 3 or 4 days or more is very hard on my body and causes loss of weight, which I have to gain back when I get home. Also, I am going to suggest that a CT scan (and its accompanying radiation) may not be necessary each time especially if my lab work is normal (except for dehydration) and the symptoms are similar to previous episodes. All my prior history is documented in my chart. These are my plans anyway, and I will let you know how it works out the next time I visit the ER/hospital. Thanks for listening!

I think the hospital does the best they can. In my case, after the NG tube is removed, I remain in the hospital for another day to introduce foods, then return home. They are afraid the obstruction will return.

Dot Kelly and Judith Clark, Thank you very much for your recent posts. While I am very sorry hearing how hard this has been on your, much of what you posted will help me cope. I am grateful to you. .
I posted my intestinal blockage story here: https://connect.mayoclinic.org/discussion/bowel-strictures-1/?pg=1#comment-911205 )
I did not post about the fact I too must be careful about bending because it can be a trigger to slight blockages (e.g., lifting heavy objects which I shouldn't be doing anyway and bending while working around the house).
Also, I did not post about my recovery period immediately following a blockage. I'd appreciate hearing
1. how you resume eating immediately following a blockage and
2. how you return to your regular activity level.
Once my blockage pain stops, my belly is quite sore and bloated, I am weak and I just want to be quiet as I heal both mentally and physically. I return to eating very carefully with only liquids and bland soft food (e.g., well cooked salted buckwheat, flounder, tea, soft boiled egg, plain yogurt). If I don't eat, some painn may return and if I eat more than this during the initial 5 days, I experience malabsorption with repeated urgent colicky bowel movements that are a liquidy dump making me weaker and quite down. (Sorry to be so graphic.)
Thank you.

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Hi In response to eating after blockage is......try not to overload. I am scared to eat a lot anyway as I think maybe the bowel blocks from backup. Although I have constant diarrhea for years( can be up to 12/15 times a day) is always loose unless there's a blockage. I really just eat what is my diet of liquid foods, crackers,toast, yogurts etc. But try to eat a minimal amount. I too have a very sore belly for a day after which is sore to touch so just rest up with a heat pack. Then I tell myself to get up & move & stop feeling sorry for myself! It's difficult living like this daily but hey we are still here!