Hello, I am a young adult with CF and I have been suffering with DIOS (intestinal blocage) for the last year. I was hospitalized last summer for two weeks during which doctors made me drink about 50 litres of Peglyte. I am once again plugged up and need advice. Are there other ways to treat this or prevent it from happening?
DiOS
- Thread starter Melb
- Start date
Some people on the site take some sort of laxative on a daily basis to keep things moving. Others get that feeling -- feeling of discomfort, fullness, lack of appetite and realize they need to take something -- mucomyst orally, golytely, milk of magnesia..... To get a good clean out. I'm assuming you're taking digestive enzymes (creon, zenpep, etc) --- are you getting enough enzymes? How do your stools look normally?
My son was born with a bowel obstruction due to meconium ileus, which required surgery. When he was 6 years old he had another blockage. Prior to that his stools were always very loose, left a greasy (sorry TMI) residue on the water line of the toilet. Turns out he had problems with scar tissue, which slowed down his digestive tract to the extent that his enzymes didn't get to where they were supposed to go. His was a very unique, and hopefully once in a lifetime experience. Since they got the adhesions cleared out, his stools have been normal for the first time EVER unless he eats something incredibly fattening. Now pretty much the ONLY time he has issues is if he eats too many nuts -- peanuts, sunflower seeds, mixed nuts. They tend to bog down his system and we end up giving him milk of magnesia for a few days to clean him out.
My son was born with a bowel obstruction due to meconium ileus, which required surgery. When he was 6 years old he had another blockage. Prior to that his stools were always very loose, left a greasy (sorry TMI) residue on the water line of the toilet. Turns out he had problems with scar tissue, which slowed down his digestive tract to the extent that his enzymes didn't get to where they were supposed to go. His was a very unique, and hopefully once in a lifetime experience. Since they got the adhesions cleared out, his stools have been normal for the first time EVER unless he eats something incredibly fattening. Now pretty much the ONLY time he has issues is if he eats too many nuts -- peanuts, sunflower seeds, mixed nuts. They tend to bog down his system and we end up giving him milk of magnesia for a few days to clean him out.
Aboveallislove
Super Moderator
Our son who had dios when around 1 year old does 3.5-4 caps of miralax daily plus 9 ml of milk of magn. daily. and he doesnt get trigger foods which always cause problems, ie texas toast and string cheese. He also does Zantac/Prilosac and culturelle.
It took us about 4 years of experimenting, watching, going to doctors, etc., to figure this out. Before he had daily tummy aches building up to ER trips and Xrays and FOS. Now he goes most weeks at a time without stomach complaints.
It took us about 4 years of experimenting, watching, going to doctors, etc., to figure this out. Before he had daily tummy aches building up to ER trips and Xrays and FOS. Now he goes most weeks at a time without stomach complaints.
LittleLab4CF
Super Moderator
I am sorry to hear of your issue with DIOS, or Distal Intestinal Obstruction Syndrome. It is common in CF, however, its popularity in no way diminishes the deadly seriousness DIOS presents. The meeting point of the large and small bowels is the distal-distal junction, so named because they are the furthest end from the openings at either end of the oral process, our gut, from the teeth on.
DIOS occuring at the distal end of the large intestine may be a continuation of something that just moved from the small bowel. Both the large and small bowel are pretty smooth and easy to move through. The transition from small to large is a link called the iliocecal valve.
The iliocecal valve isn't a valve as such, the small bowel attaches to the large bowel at right angles, a few centimeters, from the actual end of the large bowel. Food/poop must move past the junction, it's meant to slow things up so the large bowel can squeeze it and begin to reabsorb water and the continued digestive action from probiotics. Too much delay in continued processing and too much water is taken up, and you have a hard stool in a less than perfect location. This is a typical start to what can be a bowel blockage. A hard blockage isn't typical of DIOS, but it can occur, and be very dangerous. They're hard to miss, the pain rivals the worst pain, compared to giving birth or passing a kidney stone. Don't waste time wondering if your excruciating pain is just gas. A little embarrassment at the ED is worth it compared to the surgical removal of a blockage along with however much intestine has died from strangulation. Being fixed good as new is possible but time is inches of necrotic or dying intestine. Ask anybody with an exteriorized stoma, it is not fun.
DIOS is a form of constipation. From my experience, DIOS is soft, adhesive, voluminous and redefines smelly. To understand DIOS, I started with the end game, acquired megacolon. The large bowel becomes stretched out and flaccid, the inability to contract. The worthless colon may have to be removed. Too much enzyme supplement can damage the nerves of the intestines, usually the large colon, this too can result acquired megacolon, no nerves to sense the fecal matter and nothing to signal the bowel muscles to contract.
With supervision from your doctor, and the fact that most of us pay dearly overestimating the amount of enzymes taken with a meal, it's unlikely to be the cause. Overuse is serious as is underuse of enzymes. I've been on way too little, too little and like most of us taking enzymes, too much. Way too little, combined with a habit of dehydration, I had hard, dry stools. Too little enzymes and I was actually increasing my fecal volume. The poorly digested food won't be absorbed by the intestines and every microbe in the gut is having a field day. And they produce gas. Something about maldigested food creates an adhesive that can break down the normal mucus lining and attach to the intestine, large or small. Fecal adhesion makes moving a stool material nearly impossible. This has to be addressed to have any expectation of a normal bowel.
What is needed is a sense of dense weight or a force "poking" at the intestinal walls. A bowel full of light, pliant and adhesive stool can go unnoticed by the body's autonomic system. This is a miserable condition and is not easy to resolve. If your stools are anything like I describe, my best advice would be to have your doctor increase your enzymes supplement. To get a handle on my own issues, I more than doubled the amount, it was that far off. Once my enzymes were dialed in, my stools were half the volume and the other issues went largely away. It's not that easy for some people, I am forever chasing after a normal gut.
For a belly that won't settle down, routine helps many people. Any good home medical guide suggests habits that promotes regularity, stopping at laxatives and suggesting that we see our doctor. Many CFers use Miralax. It can give you that dense weight that stimulates the gut. Until last year, my trick was a mocha. Much more tasty than Miralax and the stimulant effect works. Now it works too well, herbal tea for me until whatever is causing my gut to overreact to coffee.
Often nothing seems to work. For all the caution over stimulant laxatives, 8 years ago now, my doctor told me that I might not have a choice but to use a stimulant laxative for the long term. Now I understand why the grocery stores sell bisacodyl sodium in bottles of 200. I know most fiber bulking agents and regiments and use natural fiber in conjunction with the 5mg orange pill.
When I was wondering if I was going to die from constipation or suffocate because my diaphragm was pushed up from the DIOS, someone on this site suggested a tablespoon of mineral oil. Unlike the oils associated with history of "a dose of castor bean oil" mineral oil is simply indigestible. It coats the intestines and will eventually allow a stool to slide out like a well oiled machine. Things like diarrhea or a "surprise" are very unlikely with mineral oil. A teaspoon to a couple of table spoons is my practical dose range. Never start out with more than a tablespoon with an adult. This is a poor answer to an adhesive stool, but it is recommended for easing a soft blockage of DIOS.
Stimulant laxatives are OFF the list if there's a real chance of a hard blockage. I've been pretty blocked up and been "prescribed" a bottle of Magnesium Citrate, a single dose treatment in a bottle. It is Over The Counter (OTC). This is not a gentle laxative, it is safe when used as directed. If a hard blockage is suspected, a call to the doctor would be in order.
For me, the battle comes down to a properly adjusted enzyme supplement like Creon or ZenPep. It took a while to get past the huge numbers like 24,000 IU or even 36,000 IU but they are just numbers, results speak volumes.
I hope this very long and very late post is helpful.
LL
DIOS occuring at the distal end of the large intestine may be a continuation of something that just moved from the small bowel. Both the large and small bowel are pretty smooth and easy to move through. The transition from small to large is a link called the iliocecal valve.
The iliocecal valve isn't a valve as such, the small bowel attaches to the large bowel at right angles, a few centimeters, from the actual end of the large bowel. Food/poop must move past the junction, it's meant to slow things up so the large bowel can squeeze it and begin to reabsorb water and the continued digestive action from probiotics. Too much delay in continued processing and too much water is taken up, and you have a hard stool in a less than perfect location. This is a typical start to what can be a bowel blockage. A hard blockage isn't typical of DIOS, but it can occur, and be very dangerous. They're hard to miss, the pain rivals the worst pain, compared to giving birth or passing a kidney stone. Don't waste time wondering if your excruciating pain is just gas. A little embarrassment at the ED is worth it compared to the surgical removal of a blockage along with however much intestine has died from strangulation. Being fixed good as new is possible but time is inches of necrotic or dying intestine. Ask anybody with an exteriorized stoma, it is not fun.
DIOS is a form of constipation. From my experience, DIOS is soft, adhesive, voluminous and redefines smelly. To understand DIOS, I started with the end game, acquired megacolon. The large bowel becomes stretched out and flaccid, the inability to contract. The worthless colon may have to be removed. Too much enzyme supplement can damage the nerves of the intestines, usually the large colon, this too can result acquired megacolon, no nerves to sense the fecal matter and nothing to signal the bowel muscles to contract.
With supervision from your doctor, and the fact that most of us pay dearly overestimating the amount of enzymes taken with a meal, it's unlikely to be the cause. Overuse is serious as is underuse of enzymes. I've been on way too little, too little and like most of us taking enzymes, too much. Way too little, combined with a habit of dehydration, I had hard, dry stools. Too little enzymes and I was actually increasing my fecal volume. The poorly digested food won't be absorbed by the intestines and every microbe in the gut is having a field day. And they produce gas. Something about maldigested food creates an adhesive that can break down the normal mucus lining and attach to the intestine, large or small. Fecal adhesion makes moving a stool material nearly impossible. This has to be addressed to have any expectation of a normal bowel.
What is needed is a sense of dense weight or a force "poking" at the intestinal walls. A bowel full of light, pliant and adhesive stool can go unnoticed by the body's autonomic system. This is a miserable condition and is not easy to resolve. If your stools are anything like I describe, my best advice would be to have your doctor increase your enzymes supplement. To get a handle on my own issues, I more than doubled the amount, it was that far off. Once my enzymes were dialed in, my stools were half the volume and the other issues went largely away. It's not that easy for some people, I am forever chasing after a normal gut.
For a belly that won't settle down, routine helps many people. Any good home medical guide suggests habits that promotes regularity, stopping at laxatives and suggesting that we see our doctor. Many CFers use Miralax. It can give you that dense weight that stimulates the gut. Until last year, my trick was a mocha. Much more tasty than Miralax and the stimulant effect works. Now it works too well, herbal tea for me until whatever is causing my gut to overreact to coffee.
Often nothing seems to work. For all the caution over stimulant laxatives, 8 years ago now, my doctor told me that I might not have a choice but to use a stimulant laxative for the long term. Now I understand why the grocery stores sell bisacodyl sodium in bottles of 200. I know most fiber bulking agents and regiments and use natural fiber in conjunction with the 5mg orange pill.
When I was wondering if I was going to die from constipation or suffocate because my diaphragm was pushed up from the DIOS, someone on this site suggested a tablespoon of mineral oil. Unlike the oils associated with history of "a dose of castor bean oil" mineral oil is simply indigestible. It coats the intestines and will eventually allow a stool to slide out like a well oiled machine. Things like diarrhea or a "surprise" are very unlikely with mineral oil. A teaspoon to a couple of table spoons is my practical dose range. Never start out with more than a tablespoon with an adult. This is a poor answer to an adhesive stool, but it is recommended for easing a soft blockage of DIOS.
Stimulant laxatives are OFF the list if there's a real chance of a hard blockage. I've been pretty blocked up and been "prescribed" a bottle of Magnesium Citrate, a single dose treatment in a bottle. It is Over The Counter (OTC). This is not a gentle laxative, it is safe when used as directed. If a hard blockage is suspected, a call to the doctor would be in order.
For me, the battle comes down to a properly adjusted enzyme supplement like Creon or ZenPep. It took a while to get past the huge numbers like 24,000 IU or even 36,000 IU but they are just numbers, results speak volumes.
I hope this very long and very late post is helpful.
LL
Last edited:
beautifulsoul
Super Moderator
My personal regimen is: 2-3 capfuls of Miralax everyday, Stool Softener gel cap twice a day and Reglan because of slow emptying. I also take Maalox as needed. Have you been tested to see how fast your stomach is digesting? If your food is taking too long to digest it will cause a back up. Medication such as Reglan should help with this issue. Discuss the side effects of Reglan with your doctor. Many people have reported depression while taking it. If you are prescribed enzymes make sure you are taking them. That would be another big cause.
Hugs,
Hugs,
LittleLab4CF
Super Moderator
Beautifulsoul,
You're mentioning Reglan brought back memories of having to get it from Canada because of the restrictions in the U.S. I never looked up why. Last week I attended a CME course on the cytochrome P450 gene complex. A group of enzymes produced by the liver, don't metabolize food, rather all the medicines and stuff that has no resemblance to food. It turns out that the interaction with Reglan and a cytochrome enzyme is responsible for rare but devistating tardive dyskenesia. A common theme within the older chronic mentally ill community, exposed to old psychiatric drugs, tardive dyskenesia draws the forearms up like a praying mantis and the hands are locked into a feeble looking claw. They constantly wrench their jaw around as the muscles conspire to keep the teeth from meshing. There are fates worse than death. Advanced tardis is one of them.
A test is now available to determine if a person has the genes that makes this a possibility with Reglan. This opens a huge field. Certain antibiotics are impacted by cytochrome enzymes, drugs may become easily toxic or their digested before they can do whatever they are intended. And CFer's livers are far from "normal".
If you are on Reglan, you have little to be worried about. If your doctor wants to prescribe it, I suggest being tested.
Thanks for bringing it up.
LL
You're mentioning Reglan brought back memories of having to get it from Canada because of the restrictions in the U.S. I never looked up why. Last week I attended a CME course on the cytochrome P450 gene complex. A group of enzymes produced by the liver, don't metabolize food, rather all the medicines and stuff that has no resemblance to food. It turns out that the interaction with Reglan and a cytochrome enzyme is responsible for rare but devistating tardive dyskenesia. A common theme within the older chronic mentally ill community, exposed to old psychiatric drugs, tardive dyskenesia draws the forearms up like a praying mantis and the hands are locked into a feeble looking claw. They constantly wrench their jaw around as the muscles conspire to keep the teeth from meshing. There are fates worse than death. Advanced tardis is one of them.
A test is now available to determine if a person has the genes that makes this a possibility with Reglan. This opens a huge field. Certain antibiotics are impacted by cytochrome enzymes, drugs may become easily toxic or their digested before they can do whatever they are intended. And CFer's livers are far from "normal".
If you are on Reglan, you have little to be worried about. If your doctor wants to prescribe it, I suggest being tested.
Thanks for bringing it up.
LL
beautifulsoul
Super Moderator
LittleLab you reminded me of something an attending Dr. said to me while I was in the hospital last year. I payed little attention to her opinion since she wasn't MY dr. I remember she had mentioned something about Reglan being dangerous because of how it affected facial nerves in *some* people. She acted like if I was her patient she wouldn't be prescribing it to me. Again, not my Dr. I have been taking this medication for at least 3 years now and have shown no such side effects. I constantly get blood work done and all kinds of levels are always checked including liver function.
I have not been on in awhile as I am still having problems, I type hit send and it does not go through, very frustrating as a matter fact this is my 2nd try tonight. I hv very good results with prune juice once in the morning and before bed. I did Miralax for a year or more, and some others - I ck to see what you all are using as well.. biggest issue a good BM occasionally I need a enema - occasionally if it's more than 2 days I use a laxative. It is a big problem with us all - we thought I needed enzymes for over a year, then that ended. I also had tests done a few years ago and stomach was not emptying used Reglan for over a year then weaned myself off. My biggest issues is now air and lack of it, as stated many times have only one functioning lung. . Hv been on o2 for more than 6-7 yrs at night. But expressed concern after my morning walks - or walking the dog for a hour or so. So for the past YEAR we tried to get approved for a portable - yes a YEAR we finally got portable o2, we at dealing with accompany Apria the worse - truly - getting a live person on the phone - getting all the paper work which was sent over and over - getting delivery finally. It was so frustrating. Then I see it's a 4lb tank in a wheel cart, I thought what the hell?? is this really what is called portable? Unfortunately I hv a friend batteling lung cancer and she got a portable INOGEN One.. any one heard of it??... it's light wt. she is very comfortable with it. She said her insurance covered it? I looked it up and called for information, but after this whole year of finally getting this tank - will I be able to make such a change?? Not sure.? If anyone can shead some light I would sure appreciate it. Many Hugs - Take Care Be Well Pat
Well I see it went through and I've been on he site I think for more than 8-9 years yet it lists me as a new member??? IT's past my bed time at 62 I still have very bad sleeping habits, meaning I'll go to bed now but will still be awake at 2-3am, yet my body is so exhausted... ahhh