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Sorry for long post. Questions at end. A little all over the place due to feeling sick  

Currently in hospital (3rd day). Hopefully getting released today. About two weeks ago I went skiing and the altitude got to me much worse than previous trips. Mainly flu symptoms but was going to the bathroom a lot. Started Flagyl and Levaquin and it slowed, got back to normal altitude and was ok for a day or so.  (I’ve had pouchitis maybe once or twice a year since my takedown in 1999. Always cleared up with antibiotics).  Then got sinus infection (I swear Levaquin does something to my sinuses). I stopped Flagyl because I could not keep it down. Got Augmentin for sinus and figured I’d be ok. A couple days later I went to the ER due to not being able to keep things down. They did a scan and said I had a small bowel obstruction. The only other time I had this was when I had sinus surgery and the pain meds backed me up. Anyhow, they put me on IV Flagyl and Levaquin. NG tube (awful). I’ve finally stopped having abdominal pain and am eating eggs and toast.

Question: I don’t get the sense that the docs know exactly what the obstruction is. Could it have been an ileus or all the Tylenol I took that maybe didn’t get digested. Scope showed inflammation but nothing really bad (a benign polyp that may or may not have to come out).  But the scope did not go up to the obstruction.  Would it essentially take a surgery to explore what I had wrong with me? Am I understanding that small bowel instructions happen and don’t always need surgery?



Thanks for listening.  

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A complete small bowel obstruction tends to be a surgical emergency. *Partial* small bowel obstructions generally clear up on their own, and don’t require surgery, even though they can be truly miserable. I’m reasonably sure that they can’t be caused by Tylenol. Most often they are caused by a *temporary* intestinal narrowing that results from bands of scar tissue called adhesions - the intestine can (for example) twist around an anchor point created by an adhesion, or two adherent loops of intestine can get bound up. Some people have more permanent narrowings called strictures. Food can get backed up behind the narrowed area, whether it’s temporary or permanent, and when the intestine starts to stretch it hurts like heck. The key things to manage are hydration and identifying when things are bad enough to warrant surgery. In a partial obstruction you must keep consuming water or other clear fluids, and if that becomes impossible then IV fluid is necessary.

It can be difficult or impossible to definitively diagnose this without surgery, but surgery generally leads to more adhesions and can make things worse. That’s why surgical treatment of adhesions is considered a last resort, even though some people get a great result.

Scott F

Hi,

I am so sorry you are dealing with a small bowel obstruction (SBO).

NG tubes are no fun, but they help take pressure off your small bowel and that gives it a better chance at resolving on its own without surgery. The longest I have been able to ride out an SBO in a hospital (in the hope hope hope I didn't need surgery) was 8 days. On the 8th day, my very nice surgeon said "time's up" and opened me up. As Scott mentioned above, my doc found my intestines tangled up and stuck together by scar tissue (adhesions). Think macaroni noodle twisted and stuck together with pasta glue. Nothing could get through. He rebuilt it, jPouch stayed in place, more time in hospital, clear liquids, advance to solids, soft food, etc, then sent home.

That was in 2013 - so I am 10 years out with that last rebuild. I've had several hospital stays with SBOs since 2013, but no other SBO required surgery. Those SBOs resolved with lots of laps of walking around the hospital floor, NPO, NG tube and clear liquids via IV.

I hope by the time you read this you are in the clear!

Jane

S

Scott. Any ideas what would cause the SBO based off what I did? My thought is I have adhesions or strictures and a mild case of pouchitis is just enough to inflame things, but I don’t know how that would inflame above the pouch. My other thought is it is illness related and my body just slowed down or some of the pills did not digest well (slow release), almost like eating a piece of taffy or starburst. Other possibilities is that the dilautid in the ER slowed things even more. I essentially have only two SBOs (2019 after sinus surgery and OxyContin and then 2023 after altitude sickness, possible pouchitis and sinus infection). I’m seeing that illnesses or trauma can do some damage to my insides. I’m definitively averse to surgeries now where I’ll need painkillers and where my intestines slow. Also a bit averse to situations like altitude sickness where there must have been more pressure on my bowels.

D

I don’t think there’s usually any connection at all between pouchitis and bowel obstructions. The most likely cause of occasional blockages is just bad luck, when one of the countless wiggles of the gut catches an adhesion the wrong way. It isn’t your fault. People really want there to be a more satisfying explanation than that, so they blame things like the food that backs up behind the narrowing. In some cases people develop food superstitions because of this. Folks with strictures or other permanent narrowings, OTOH, do need to be careful to only eat things that will pass easily through the limited opening.

Scott F
Last edited by Scott F

I have had three SBO's since my Jpouch (three surgery method). In the last instance, days of NPO...feeding tube and IV fluids at the hospital. My original surgeon is still my primary and oversaw all SBO's.  With the last one, she took me to the operating room to see what was going on.  Even after days of no solid food, the anesthesia helped release two liters of "stuff" from my small bowel.  Wow!

In consulting with my surgeon, there was no clear answer what was causing these SBO's and especially this last one.  She DID state that STRESS can be a big factor.  With that, my pelvic floor is "rock solid" and overactive....this could have resulted from decades of ulcerative colitis (perhaps my body protecting itself?) or post jPouch surgery.  We'll never know.

But, as with other responders, I agree on staying hydrated (which I'm not really good at) and staying with foods that are easy to digest.  I also take magnesium to help relax muscles as well as help clear my bowel when feeling constipated.

Sending love and light to all jPoucher's...

AG

@Acia Gray your story reminds me of the time in 2000 after takedown where I was having so much pain and not going to the bathroom. They brought me to surgery and put me under. I woke up thinking that I had been cut open, but they had actually drained a couple of liters of fluid from my pouch. Turns out this was my first bout with pouchitis. Antibiotics cleared it up. I think I got drained one more time. I don’t remember what caused the backup, probably the pouchitis inflamed an already narrow spot.

D

My Jpouch is 22 yrs old. I have had probably 20+ SBOs. Miserable. I have had them from eating too fast, being stressed while eating, not chewing my food and sometimes for no reason I can figure out. The last 3 were the same month almost the same day. End of March. My doc told me that I need to eat small meals, stay hydrated every day and recommended Liquid IV. It is a little too sweet and causes diarrhea if I drink too much but dehydration is also a issue with SBO and as Scott said, sometimes there is just a bad luck, twist in the gut. I do know that I have stopped them from getting worse. Stop eating, drinking hot tea, walking, massaging, drinking liquid IV, meditating. If they don't resolve within 24 hours, I'm off to the Emergency Room.

Joanne

@DJJ2019 It is good to learn you are home from hospital, but I am sorry you are still experiencing cramping and leakage. I sincerely hope you can rest more and feel better in coming days.

By the way - up the thread a bit, you mentioned wondering if the pain meds the hopsital gave you when you came in to the ER might be causing the problem or possibly making it worse. I meant to reply that whenever I had an SBO and went to the ER, I was always worried about the same thing. That went on until a few years ago, after the ER initial IV dose of Dilaudid took the edge off the excruciating pain, I told the ER doc to not give me any more because I was afraid it would slow things down. She was pretty annoyed and told me in no uncertain terms that the pain meds could do the opposite - they could help relax, untwist, untangle. So, I agreed to another dose. Phew. She was right. It did help. I didn't need pain meds for the next few days I was in the hospital on an IV for fluids and NG tube until my guts finally "did their thing". Now my fear of pain meds is gone and I won't refuse them in the ER should I need them. That said, short of an SBO, I still avoid pain meds for fear of them clogging up the works.

S

@Joanne I can’t fathom 20 SBOs. That must have been awful. The docs just don’t know why? I was hoping maybe I’d learn where my SBOs are and why. I need to followup with GI and maybe see if they can at least tell me if it is near the pouch, the takedown site, or just further up the small intestine. I just hate that with a little bit of inflammation or a slight blockage that this could be kicked off. I don’t even touch veggies anymore due to worry about a blockage. I see military docs, some of the best, but most don’t see a lot of pouch patients. At some point when I retire, I look forward to going to a clinic like Cleveland with better specialists. I’d like to know someday that I can call a doc who knows me and my case well and does not need me to explain my history all the time.

D

DJJ,

It's been rough but I forged on. During my working career, (I retired 5 years ago), I had probably 16 SBOs and it never stopped me from traveling for my work or living a life close to normal. I hiked the Appalachian trail, camped, traveled to China, Japan, Germany, England, Italy, Denmark, New Zealand and Australia. I had not a single episode during my travels. I did ask my GI docs for names of doctors in each of the countries that I could contact if I had a problem. I never had a single one. After the first two SBOs, I found my acupuncturist and I remember thinking that my life of travel and traveling for work was over.  He helped me first put together a plan for what to do when I realize I am obstructed. There were several actions: make some hot tea to stay hydrated, exercise and do yoga, walk, do some mindfulness meditation, massage my belly and REPEAT. I would do this throughout the night and reassess in the morning. I have been able to resolve about 4 obstructions doing this routine, plus having a plan reduced my panic and helplessness. What also helped  was acupuncture every 3 weeks. My acupuncturist, an amazing medical doctor, also was a hypnotherapist. During the 14 years that I received acupuncture regularly, I had 3 SBOs. Prior to acupuncture I was having one a year, so it was a huge improvement. Then I moved away to CT where I have not been able to find a decent acupuncturist. Since moving here in 2018, I have had THREE SBOs , that's 3 in 4 years, requiring hospitalization. I can't say why acupuncture helped but the needles were put in areas related to stress and my GI functioning, plus the doc was a hypnotherapist. I can't say he openly hypnotized me, but that could be part of it. I think our bodies are complicated and our emotions, or at least mine, and mental states, profoundly affect our physical states. I am very careful not to eat while I'm stressed or angry, not to eat when I am exhausted (I'll drink some water or liquid IV and wait until my emotions are settled down).  This is the best that I can do and I accept that there are times I need to go to the hospital. That stinks but my life with a diseased colon was also awful. I do have a better life now in spite of the SBOs.

Joanne

Oh, another thing. I do eat veggies and I chew them very well. I also eat nuts, in moderation and chew them very well. I'm not suggesting you do this, its just my experience. I don't think my SBOs have always been in the same place. I am a person that makes scar tissue very easily, regardless of where it is, my skin, my internal organs, etc.  And yes, having a doctor who knows you and has expertise is very important. i went to the local hospital here in Danbury where I live and the surgeon just couldn't wait to do surgery. That's  an important thing. NO SUrGERY, unless the obstruction doesn't clear after 5+ days.  This surgeon didn't know what the H. he was doing. My GI is from the CCF and is now at New York Presbyterian. The last obs. I had was March 2022. We drove to NYC and even though it was a long drive, I won't go anywhere, where the surgeons don't know how to take care of us. He only does pouch issues and is probably the top expert on the subject in the world. His name is Dr Bo Shen. He worked with Dr Fazio at the CCF.  I hope my long message has some nuggets of help for you. All the best.

Joanne

I was hospitalized for a SBO 2 years ago. Since then I’ve had 1 dilitation to open a stricture, at the Cleveland Clinic. I will have to go back every 4-6 months for this procedure. I find that if I eat small frequent meals, low residual and drink at least 8 oz of water with every meal, helps tremendously. I also take Miralax if I start to have abdominal pain, which can be indicative of a SBO, along with clear liquids, until resolved. This works instantly and has luckily kept me out of the hospital.🙏😊

D

@dd  I appreciate your comment that Cleveland Clinic is able to dilate strictures. This may seem like an ignorant question (because it is!) - how do you know the difference between a stricture that can be dilated and a small bowel obstruction? Does it feel different? I know SBO pain to be horrific, but since it comes in intensifying and decreasing waves, that helps me know it is an SBO.

Your post made me wish for the hundredth time for Cleveland Clinic to have an outpost with G/I expertise in Seattle.

S

I am so glad I found this post. I have a question for those who've had obstructions.

I have lived  23 years with my j-pouch, frequent pouchitis eventually became crohns disease about 5 years ago. I am now in hospital (3 days). I have had quite a few obstructions that always resolved within a day with minimal interventions, but this one was terrible. I thought I was going to die. They did a scope and the pouch was fine, then they did a ct and saw the scarred narrow area up higher that was causing the obstruction. Day 2 things started moving, liquid output every 2 hours with a bit of gas, BUT, my belly is still bloated, swollen and tender, it hurts to breath deeply. It reminds me of how I felt post op with the jpouch, every step walking hurts. They are sending me home, as I am drinking and only taking tylenol now. I am hoping this pain is just from all the spasms during the peak of the obstruction- it was like being in labour. Any one remember being so tender after and for how long? I am scared to eat, as it feels it will immediately obstruct again.

DeniseLise

I’ve been hospitalized a couple of times for SBO, and yes after it cleared, I was very sore, mainly felt like my abdominal muscles had had a workout. I have had my S pouch since 2001 d/t UC. Had no problems until 2019. They have all been related to lack of hydration — due to traveling or I made a wrong choice in something I ate. The 1st time was the worst, had an NG tube, and was in hospital a couple of days while on vacation. They gave me gastrograffin, which is a dye they use for X-rays, but also a laxative, and that worked quickly. I have had it 3 times, and it has worked every time. I am extremely careful about what I eat, especially when traveling, and will take along Ensure, in case my menu choices are limited.

V
@DeniseLise posted:

I am so glad I found this post. I have a question for those who've had obstructions.

I have lived  23 years with my j-pouch, frequent pouchitis eventually became crohns disease about 5 years ago. I am now in hospital (3 days). I have had quite a few obstructions that always resolved within a day with minimal interventions, but this one was terrible. I thought I was going to die. They did a scope and the pouch was fine, then they did a ct and saw the scarred narrow area up higher that was causing the obstruction. Day 2 things started moving, liquid output every 2 hours with a bit of gas, BUT, my belly is still bloated, swollen and tender, it hurts to breath deeply. It reminds me of how I felt post op with the jpouch, every step walking hurts. They are sending me home, as I am drinking and only taking tylenol now. I am hoping this pain is just from all the spasms during the peak of the obstruction- it was like being in labour. Any one remember being so tender after and for how long? I am scared to eat, as it feels it will immediately obstruct again.

Yes I have been extremely sore after a small bowel obstruction.  The first one was the worst because it went on longer: I went to the hospital and they gave me the kind of pain killers that slow down the gut movement so it took longer to resolve.  I was sore for over a week.  I just had liquids and jello for the first few days, then started adding back in some soft foods.  I don't think it is the food obstructing the bowel for me: its my bowel getting hung up and twisted on the adhesion of the ostomy site.  I have never noticed a pattern of certain foods making my guts perform more gymnastic movements which increases he risk of SBO, but I have noticed that giving my guts psyllium has increased their tone and I have not had an encounter with a SBO since I started taking it.  That might be a coincidence.  It's been just over a year.

**All my SBOs would fall in the to the "partial" category, so far.  Knock on wood!

SM
Last edited by Sara Marie

@DeniseLise I'm so sorry you have been through the wringer. Scary and difficult. While it is not unreasonable to be tender and have sore aching muscles from cramping so hard due to the obstruction, it would be helpful to let your medical staff know your concerns and symptoms before you are discharged.

In general, the more water-y the food you eat, the better, at least until you have evidence that food is passing through and you gain confidence that it's going through okay. After an SBO, my hospital doesn't discharge me until I can eat soft white toast and scrambled eggs, but when I get home I remain a bit wary and go back to clear and solid liquids for a couple days, then broth and soft white rice, then advance to ground turkey and broth, pudding, ice cream, etc. My SBO's are also usually due to scar tissue adhesions. Also, my first week out of the hospital, I ask my primary care doc if I can come in so she can listen for bowel tones the first week I am out of the hospital, and that's okay with her.

If your symptoms return after you are out of the hospital, go back to the hospital. As rotten as that sounds, knowing I could go back to the Emergency Room gives me the confidence to be discharged.

Good luck to you, do let us know how you are doing. Fingers crossed for your complete recovery.

S
Last edited by SeattleJane

I really appreciate your replies. I am home now, staying on clear fluids until my pain and swelling are gone, then I'll start back slowly with boost, rice, eggs. Thanks for your advice SeattleJane. I was given a link to LyfeMD by my gastroenterologist. It has the  Crohn's recovery diet on it that I plan to follow, and a prescription for Rifaximin. I am that person who researches the sh** out of everything and both the med and the diet have given me  hope. My abd muscles are still sore but slightly better. It seems I developed a hiatal hernia from all that abdominal pressure that is unpleasant and I am a little light headed from lack of food.

Sarah Marie, I thought my blockage was from scar tissue at the old ostomy site, but the ct scan showed it was a bit further down and more likely a stricture. Its always been in the same place. I take daily metamucil, to absorb liquid and slow things down, but it has to be the exact right amount or it does nothing or I feel it pass (like a 1 minute partial obstruction) in that same area.

Vickie, I can only dream of travelling, good for you! Fear of no toilet access is a big thing for me even on short trips. Maybe I can coin that FONTA.  The surgeon was talking to me about removing the pouch and having a permanent ostomy, besides being terrified of dying, I thought,  "I will be able to travel!"

It seems I come to this forum every year or two, when things are rough, and the support is amazing. Thanks all, I'll be sticking around for a while.

DeniseLise

Hello all,

I am newly home last Wednesday from the hospital after *another* SBO, but this one was different enough I want to post a few notes about what was "new" in the hope that it is helpful.

1) An SBO diagnosed on the same day of having lots of diarrhea? Yes. I was alerted late evening to what felt like an SBO by the classic waves of excruciating abdominal pain, BUT I had 3 major bouts of diarrhea earlier that day so kept second guessing myself. How could it be possible to huge amounts of diarrhea AND an SBO? Isn't that a contradiction in concepts? Uh, nope. Surgeon said it is something he teaches new med students - don't think that a patient doesn't have an SBO just because they have diarrhea, the diarrhea is the "downstream" waste from the stricture point getting out.

2) NG tube size increase? The ER visit was same as it ever was - take an UBER to the ER, get evaluated,  IV started, have a CT scan to diagnosis, IV pain meds, NG tube insertion. The difference? This NG tube was made of both a harder plastic and a bigger gauge (diameter). NG tubes are no picnic, but they can help a lot and I've welcomed them in the past as a useful tool in resolving an SBO. Not this one. Apparently the switch has been made to harder plastic to make insertion easier. Uh, I may buy my own and have it ready to take with me for my next SBO adventure.

3) Contrast study: Lots of folks have mentioned the value of a contrast study to both "map" the exact location of the SBO and to help resolve the SBO and yep - that did the trick for me - the SBO was resolved by the flushing effect of the contrast solution (The solution was administered via my NG tube instead of orally - took about a minute to go into my stomach).

4) A not so fun learning experience: A gastric bleed caused by the NG tube? Yep. Possible. This was really new to me - learning that NG tubes can cause irritation of the stomach or throat lining - but apparently it is reasonably common. Seeing blood streaming out of an NG tube was initially scary as all get out, but it is healing quickly.  Once the NG tube was removed, I received IV Protonix to help heal the irritation. The bleeding has stopped and I will continue taking Protonix pills for 2 to 4 weeks to continue healing.

I'm home now and recovering with weekly visits to my primary care doc to be sure my lab work returns to an even keel.

And hey, if you've read this far, you could have majored in Russian Literature. :-)

Cheers to all,

Seattle Jane

S

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