Seeking Advice for Unexplained Ileostomy Blockage

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TerryLT
Oct 22, 2021 8:01 pm

Hi all, well, I thought I was done reporting about my hospital experiences, but I was wrong! I had only been out of the hospital for one month since getting my old colostomy stoma and large bowel removed and everything with my ileo (which I've had for just over a year) was working just fine, until Sunday night. I started having severe pain just after going to bed. I tried all the recommended stuff for a blockage, lie flat, apply heat and gentle pressure around the stoma, but the pain only got worse. After a couple of hours, I finally gave up and my husband drove me to the ER. I won't even go into the hellish experience of my 14 hours in there, but I was finally admitted. The CT scan showed nothing in particular but things were not moving. The next evening they gave me a contrast fluid to drink for an X-ray and it turns out the contrast has a laxative effect, and that worked! It has continued to work, and I was released day before yesterday, still not really knowing why I was in there in the first place. I am fearful of it happening again. I had not changed my diet in any way. I try to chew really well and drink lots of water and other fluids throughout the day. I'm as active as I can be while still not fully recovered from my surgery. I don't know what to think. The ostomy nurse did give me a few strategies, a catheter to insert into my stoma, and recommended I drink something really sweet if it happens again.

Any advice or other ideas would be much appreciated. Anyone else experienced a blockage without really knowing what caused it?

Thanks!

Terry

P.S. I did have one 'close call' when I thought I was blocked, but it cleared itself. I didn't know what caused that one either.

Bill
Oct 22, 2021 8:47 pm

Hello Terry.

I can't really give any useful advice on this one as, after years of everything working reasonably well, recently my routine has gone to pieces for no discernable reasons.  Hence, I look forward with interest, to reading the more constructive replies to your post.

best wishes

Bill

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HenryM
Oct 22, 2021 9:55 pm

Hi Terry, So sorry for your troubles.  I've never experienced a blockage, but I can say that, when I ingest milk products (milk, ice cream, cheese, etc) it loosens me up tremendously and pours thru like fat thru a goose.  Also, when I recently fixed myself a Bloody Mary with V-8 juice, I got the same reaction.  I hope everything turns out okay for you.   HenryM

lovely
Oct 22, 2021 10:56 pm

Hi Terry, sorry you had all these problems. I have not had that problem. Hope you are doing better now. Best wishes

Hairdresser
Oct 23, 2021 12:25 am

Hi Terry,

Sorry to hear about your blockage. I have an ileostomy and had a blockage early on. I had a pizza with mushrooms and it gave me a terrible blockage. I had to go to urgent care at the hospital and had to sit in the ER in horrible pain, the worst pain I have ever felt!! They mentioned if I didn't pass it, they would have to operate. Thank goodness I did pass it on my own! I spent a night in the hospital but was very sore after.

So my advice would be to stay away from any foods that can swell in your stomach like dried fruits and mushrooms. Also, try to stay away from popcorn and nuts, as they can be dangerous to us as well.

I wish you better health and much happiness.

Maura

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
w30bob
Oct 23, 2021 3:54 am

Hi Terry,

Sorry to hear about your 'fun' time with a blockage. Anyone who has ever had one can sympathize. Blockages are funny, because they can be caused by so many things (reasons). The CT scan, which is usually a pretty good way to image, has one limitation, and that's the radiologist who reads the scan. Some are good, some are really good, and others are just occupying space. When you talk to your gastro, ask if he/she has a specific radiologist they prefer.....my gastros thru time usually did. And it's easy to send the CT scan file to them. The problem with what your ostomy nurse said about drinking something sweet is that if the blockage is caused by food, i.e., something too large to pass through, then the sweet drink will cause the intestine to dump bile and help lubricate........which makes it easier for the thing blocking to pass through. But if the blockage is caused by something physically related to you, like a twisted bowel or extreme inflammation.....adding more liquid to what already can't pass will make things worse. And worse in this case means when you have an obstruction for an extended period what's in your bowels just keeps accumulating as your stomach empties and your bowels secrete bile. At some point when your pipes are too backed up your body will institute a regurgitation action and you'll literally puke up everything.....and I mean everything. It's not a pretty sight, nor does it taste good, but it's the body's way of self-preservation. And it tells you that things are almost as bad as they can be when that happens. Then, if the pain continues to increase your body will go into shock and you'll pass out. THAT's as bad as it can get.

Not trying to scare you or anyone, but blockages, while normally not too concerning......can get really ugly if not addressed. I used to always resist going to the ER when I had a blockage, telling myself it would pass in another 5 minutes or so. And eventually I'd get into so much pain I wouldn't want to do or go anywhere, and I'd just crawl in bed, turn the lights out, and hope for the best. But as I just described, I learned the hard way not to wait too long to seek medical help with a blockage. So you did the right thing. I hope they can figure out what caused it so you can get some peace of mind.

Regards,

Bob

Lily17
Oct 23, 2021 6:03 am

Hi, Terry.

I've known each time what caused each of my blockages, but it was usually while in gawdawful pain that I thought back on what I ate and how I ate it before I figured it out...except the first blockage, 14 months after my ileostomy surgery.

My first blockage caused me severe abdominal pain. I broke into a sweat, then came the projectile vomiting when nothing else consumed after the blockage was created could move it, or pass by it. The pain was just below my diaphragm, and that pain radiated into my back. I wondered if I was having a heart attack, as back pain can be a symptom of some women's heart attacks.

Then came the EMTs and firemen after I called 911. To my office. Midday. Sirens blaring, after I asked the 911 operator to have them "run silent". (So much for trying to keep my emergency under the proverbial radar...) After a preliminary ECG, the EMTs told me it was "inconclusive" and that ECGs at the hospital would give more detail as to my heart's condition. Off we went in the ambulance to the ER. ECG, bloodwork, and a thoracic x-ray were all negative. While lying on a gurney in the ER hallway for six hours in extreme pain, all I could do was keep changing positions - side, back, other side, fetal position, stretched out - trying to find relief. Six blessed hours...

At one point, I shifted my position, and I thought I felt some pressure also shift in my abdomen, and pressure from behind my stoma release as my output (finally!) went through my stoma and into my appliance. RELIEF!!! I asked the attending nurse if I could examine myself and appliance in the restroom, and - lo and behold! - it wasn't my imagination.

I spent another 30-45 minutes standing and walking back and forth in a short hall, ensuring that my blockage kept moving along, that my GI tract was clearing.

So, this is what often works for me with blockages:

1. Prevention - My new physiology doesn't deal well with thick, sticky, low-fiber substances like peanut butter, chocolate-hazelnut spread, thick frosting, fudge, cheese, or highly-processed, low-fiber baked goods. (Raise your hand if you've had a blockage after eating a massive chocolate-chocolate chip muffin...) I need a lot of fiber and fluids to keep things moving. Not everyone can do nuts, mushrooms, olives, leafy greens, grapes/tomatoes/apples/pears with peels, or popcorn without problems, but I can with some thoughtful planning. It basically includes chewing everything VERY, VERY well, adding fiber-filled items to my repast, and consuming it all with a lot of liquid while thoroughly enjoying it.

2. Treatment - I keep regular Coca-Cola in my house and in my lunch bag to use as my own personal "Drano"; if used as soon as you feel the discomfort of a blockage, the carbolic acid in this product can act to break through it. If the blockage is already bad, however, you may throw up the soda, running that acid back up your esophagus - super uncomfortable! If you can manage through the pain, WALK around. Gravity can help move the blockage through the GI tract better than lying inert on a couch or bed. Heating pads on 'medium' heat or hot water bottles lying upon your stomach can help relax the abdominal muscles, reduce cramps, and other muscle tension. (Note: Place a towel between your abdomen and the heating pad or hot water bottle to insulate your skin and stoma; don't add a burn to your list of problems!) Like the Coca-Cola, with early-onset blockages, warm peppermint tea can be helpful for the GI tract. If all this doesn't work, get yourself into the ER! Yes, no fun, but neither is worrying about how long the projectile vomiting will continue.

3. Post-blockage - Lighter, more liquid-filled meals will reduce the pressure on your GI tract, and the stretched pulled, supportive tissue structures that surround it. OTC analgesics like Tylenol or Aleve can take the edge off the lingering abdominal pain. (Consult with your GP or GI doc for the most appropriate OTC analgesic for your particular health concerns.)

As always, "An ounce of prevention is worth a pound of cure."

To paraphrase an oft-used caution: "If we do not learn from blockages, we are doomed to repeat them."

Hope this helps, Terry! Feel better.

Lily17

ron in mich
Oct 23, 2021 2:50 pm

Hi Terry, sorry to hear you had a blockage. Before I had my resection surgery a few years ago, I experienced what Bob and Lily said and did. Finally, I had the surgery as the surgeon on call said he wouldn't release me after going in for a blockage and seeing the X-rays for myself. Knowing how far my stoma had shrunken down from its original size, I knew eventually I would need surgery and now I'm glad I did.

freedancer
Oct 23, 2021 6:49 pm

Those dang blockages are a real bugger! I had my first emergency surgery on 12 July 2017 after my lower bowel died in less than 24 hours. The doctors had no explanation. 7 months later, it became structured to pinhole size. It had been getting smaller and smaller for 7 months after failing pretty much in the first few weeks of the first surgery. I was rushed into surgery again on 17 February 2018 and everything was completely replaced. The doctor said it was the worst stricture he had ever seen. Both times I was within 5 minutes of passing away. I have had three blockages since then but I have made myself a checklist that I go through with the hospital being the very last step. I found that regular tea and regular Coke will most of the time break it free. My worst one was when I ate broccoli and accidentally did not chew it up completely. It slowly cleared but it was miserable!! Don't be scared about getting another one. Just make sure you chew really well and if you know what caused the blockage, avoid it for a while. Good luck to you!!

Hev
Oct 23, 2021 7:09 pm

I haven't experienced this, but was advised a little fizzy drink will push it through!

Marilyn Flowers
Oct 23, 2021 8:44 pm

I'm so sorry about your blockage. I've had an ileostomy for 57 years and have not experienced this. I do chew any nuts or hard items really well and drink lots of water (and other liquids) as you do. Best of luck in the future.

TerryLT
Oct 23, 2021 8:55 pm
Reply to Bill

Hi Bill, sorry to hear you are having your own 'plumbing' issues. I hope it resolves itself soon.

All the best,

Terry

TerryLT
Oct 23, 2021 9:04 pm
Reply to HenryM

Hi Henry, thanks for your kind words. Isn't it strange how we are often so completely different? Dairy products don't seem to have much effect on me one way or the other. Same with tomato or V8, which I drink almost daily. I wish I could find something that works like "poop through a goose"!

Cheers,

Terry

TerryLT
Oct 23, 2021 9:09 pm
Reply to Hairdresser

Hi Maura, your experience sounds a lot like mine, my sympathies! For over a year with my ileostomy, I've had no problem eating anything, including mushrooms, seeds, nuts, anything with skins, etc., until now. I guess I need to start rethinking that. Thanks for the advice.

Terry

TerryLT
Oct 23, 2021 9:30 pm
Reply to w30bob

Hi Bob, thanks for this. One of the weird things that happened when I was in the ER was suddenly I felt a subtle shift in my gut and a fairly small amount of thick output came out, followed by quite a bit of gas. The pain decreased quite a bit and I thought it was finally unblocked and I was so relieved, but it was short-lived. Within a few minutes, the pain started up again and just got worse. There was no further output until the following night after having taken that contrast liquid. My history has always been about motility. My ostomy nurse, who knows my case well, did talk about the fact that if an obstruction is actually something like you mentioned, a twisted bowel, that adding more from the top will only make it worse. But the way mine reacted has her thinking that mine was more motility related. Maybe some of the thick output was having a hard time passing and the gas only made the pain worse. When it finally did pass, my body just reverted to its tendency of not moving. The fact that the laxative liquid did the trick seems to support that. Another thing she has suggested is that the hole in my stoma may have started to get tighter and she has recommended I try to dilate it slowly myself, each day if I'm wearing a two piece, or whenever I change my pouch if it's a one piece. I know how to do this and will try tomorrow on my next change. I have noticed that I "feel" the output coming out of my stoma a little more than I did in the past, certainly not always, but sometimes when I pass something quite thick, it hurts a bit. This makes me think she could be right about the hole getting smaller.

I've had the tube down my nose into my stomach before, and I don't ever want to go there again! They were threatening me with that during this last stay, but thank God, I woke up with a big balloon on my stomach that night, and then two more big balloons after that, so by morning, all was good.

Thanks for your always helpful info and advice.

Terry

TerryLT
Oct 23, 2021 9:39 pm
Reply to Lily17

Thanks Lily, a lot of this is really helpful to me as it seems like you and I are similar in how our ileos work. I need lots of fiber and liquid to make things work properly too. I think I will start keeping some Coke on hand, as much as I don't like the stuff! Better than some of those vile super sweet laxative drinks.

It sounds like your blockage experience was similar to mine as well. I certainly had the whole projectile vomiting going on, right onto the floor beside my hospital bed in the ER, because I couldn't get anyone's attention long enough to bring me a barf container. One nurse came in and looked at it and then came the lady with the mop to clean it up. But did the nurse send someone with a barf bag? No, so I puked on the floor again, multiple times. A night to remember for sure.

Anyway, I will keep your suggestions top of mind, many thanks!

Terry

TerryLT
Oct 23, 2021 9:43 pm
Reply to ron in mich

Thanks Ron, this is one of the things I'm worried about, is that my stoma may have gotten smaller. Do you have a loop or end ileo? I chose not to have my loop replaced with an end, and now I'm wondering if that was such a good idea. I wonder if there is less chance of blockage with an end ileo. Something I will discuss with my surgeon, thanks for your input.

Terry

TerryLT
Oct 23, 2021 9:46 pm
Reply to freedancer

Thanks Freedancer, it sounds like you have had a pretty hard time of it. I'm thinking more and more that the size of my stoma hole may be the problem, that it's getting smaller, and I'll look into it. And another vote for Coke, going to go out and get some today.

Take care,

Terry

Past Member
Oct 23, 2021 9:54 pm

Hi Terry, blockages, the word that strikes fear in the heart of Osto people!! I mentioned in a post about my worst cases.

I think I fear a urine blockage even more. After an operation which was called off after they opened me up... from stem to stern... because of scar tissue growing inside like out of control ivy in your garden. About two weeks after I made the mistake of eating a decent-sized steak. Digestion was a bit much for my still traumatized guts. I didn't do enough walking or activity and the residue was too much for my belly. It was the weekend and luckily there was a doc on call in a small clinic. I managed to drive there and my usual doc was on that night. I quickly got to the point where I could barely talk. She got an ambulance for me. I was in for about two weeks. I rarely eat steak these days. I don't even eat hamburgers much. The last time I had a big juicy burger/mushroom/onion and lettuce and halfway through I boxed it up for home. I don't really risk burgers anymore. I eat pizza but not too much at one time, two small slices and back later for more. As you know, mushrooms can be a problem. When I feel that my gut is slowing or not enough output, I turn to ramen noodles (repeating myself). I think that hydration is very important. Belly massage works a bit. Just walking around and doing a little bending helps. The one important thing is not to eat too much at one time. They didn't have to operate on that occasion, just saline and pain meds.

The urine blockage was really scary, felt like a balloon inflating. My urethra blockage was caused by swelling in the rectal area. It seems that the swelling put pressure on my urethra. Something like the way a swollen prostate pinches off the urethra and blocks urine flow. Went to the on-call doc again (midnight on Sat!!). She put a Foley in and got an ambulance. I keep some Flagyl and Cipro on hand, so if I get the swelling in the rectum area, I start taking those and it works every time. My J-Pouch is still inside (not functioning) and it gets an infection sometimes, this causes the swelling. Those blockages were a few years ago and it's been good since then.

If you ever feel that bloating in the belly, I would say to cut back on food, way back. Chicken soup or noodles in small amounts.

I never heard about the Coke effect before. I do know that like pickled stuff, I sometimes crave a drop of Coke, not too much at once, so now I know why I have to have a bottle of Coke on hand!! Once again, my body telling my brain what I need. B

I once got a blockage from a store-bought apple. I have apples in my garden and pears, and I can eat organic apples with no problem. I don't use pesticide or fertilizer on them. I place all grass cuttings around the trees which quickly rots and fertilizes the trees. The wet Irish weather breaks cuttings down really well and quickly.

If I have to pause the solid food for a while, I would use Ensure or any one of such drinks to keep up my strength. I do notice as the years roll by, I can digest many more items like lettuce and bread, in small amounts. I love spinach and blueberry muffins.

Stay healthy all

EamonXx

Rudolf
Oct 23, 2021 10:48 pm

I have had an ileostomy since December 23, 1976. About a month at home, I made the mistake of eating corn, and a blockage occurred. To be honest, it must have eventually cleared itself. Since then I have had maybe two or three blockages. One time I did put my little pinky finger slowly in the opening, and surprisingly the blockage had been right there, and lots of stuff came out. On the other occasions, I find curling up on the floor, or doing something similar to sit-ups helped me. Also, I drank about 2 or 3 cups of hot tea, and that helped as well. Keep chewing your food really well, and eat slowly.

Newbie Dana
Oct 23, 2021 11:17 pm

Luckily, I have never had a full blockage, but have occasionally had a partial blockage that eventually passed, usually accompanied by lots of gas and bloating and pain. Often lying down on my back alternating with walking around helps shift things enough to finally pass - usually very hard/compacted followed by an enormous outflow of very liquid output. I have learned to avoid popcorn, because it seems to swell up in my gut and cause problems. My latest problems are (I am almost certain) caused by not drinking enough water while I am working wearing a mask. It's sometimes hard to take enough breaks away from everyone so I can take off my mask and glug down half a bottle of water! At least it's getting cooler now so I'm not sweating out even more liquids.

Schwebs9
Oct 24, 2021 1:37 am

Hi Terry, I'm not familiar with blockages, however my dietician gave me a list of things that can form a blockage such as: skins from fruit, olives, onions, and seeds from strawberries, zucchini, etc., and popcorn kernels. I don't know if that helps or not, but hopefully it will. Seeds from watermelon and such are another source. Take care and I know what it is to be in pain and sit or lay in that ER for hours. God bless and take care.

ron in mich
Oct 24, 2021 2:28 pm
Reply to TerryLT

Hi Terry, I have an end ileo. If you have a smaller opening over time, my original surgeon suggested getting finger condoms or cots (they're called) and some Vaseline, and gently inserting into the opening. I did that for a couple of months when changing, but got tired of it so I quit.

TerryLT
Oct 24, 2021 8:17 pm
Reply to Anonymous

Hi Eamon, lots of good suggestions here, thanks. The urinary blockage sounds really nasty!

Terry

TerryLT
Oct 24, 2021 8:19 pm
Reply to Rudolf

Thanks Rudolph, I think I will try the finger insert next time.

Terry

TerryLT
Oct 24, 2021 8:22 pm
Reply to Newbie Dana

Hi Dana, this sounds familiar to me. When my blockage finally did clear, it was very thick, followed by a large amount of very loose, almost just water at the end. I always need to remind myself to drink water too. It's easy when I'm at home, but out and about is more tricky. Thanks.

Terry

freedancer
Oct 25, 2021 6:01 am
Reply to Hairdresser

When I got my ileostomy, the doctor told me absolutely no mushrooms, sauerkraut, Chinese spring rolls (the ones with the bean sprouts), stuff like that. He said the mushrooms act like a cork and can cause horrible problems. "Maxine" decided she did not like carrots at all, but I am able to eat Denny's more stew, the kind in a can. It is really well cooked and very tasty. Those vegetables have to be really cooked well. I can eat cream of mushroom soup as the mushrooms are very finely chopped.

freedancer
Oct 25, 2021 6:10 am
Reply to TerryLT

I am terrible about pushing fluids. I just don't get thirsty, so I don't drink a lot of fluids, and I know that is a big no-no. I have been trying to remember to do so, though. I get busy on projects and forget to eat and drink, and by the time I remember, it's usually because I am having a low blood sugar incident, and suddenly I remember, "Oh heck! I forgot to eat again."

Newbie Dana
Oct 25, 2021 3:04 pm
Reply to freedancer

Always remember, what diet the doctor or dietician puts you on right after surgery doesn't mean you have to stay on that diet for the rest of your life. Stick to the diet for the first several months to give your gut and the rest of your body time to heal. Usually, a low residue diet is what they prescribe at first. Your ostomy will start out swollen and gradually shrink (unless you have adhesion or scarring issues). While swollen, it doesn't like to pass any residue/waste that is clumping or fairly solid, which can plug up the works. Later, you can slowly start adding back in some healthier alternatives (salads and more fiber, more vegetables, etc.) which, frankly, your gut just can't handle at first. Just remember to go slowly and not too much at once. Eventually, you will look back and realize you're eating pretty much like you did before you got your new BFF. Along the way, you will probably find a few things that your gut hates no matter what, and other foods you will just need to eat in moderation because too much causes problems. Once you are at that point, generally just avoid all-you-can-eat buffets because all-you-can-eat is more than all-you-can-store-in-your-newly-shortened-colon!

TerryLT
Oct 25, 2021 7:37 pm
Reply to Newbie Dana

This is a good point, Dana. I was very careful for several weeks after my ileo. I didn't eat anything fibrous, no nuts or seeds, skins on fruit or veg, mushrooms, corn, etc. I slowly started to try these things and found I was okay with all of it. But I do have to chew like crazy and drink tons of liquid, and I think maybe I was getting a bit complacent about the chewing and hydrating. I am being REALLY careful now. I have definitely found that eating small amounts is the way to go, as you say, with this shortened bowel. No more huge plates of pasta for me! This is a good thing, but it was a bit hard getting used to. I'm sure we would all be better off eating smaller meals anyway.

Terry