GI advice

Rebjane

Super Moderator
Looking for some input. I feel like I am having a hard time getting my child with CF's GI system back on track. It's a long story but if you have time I'll give the background.

Daughter is very pancreatic insufficient. She injured herself this summer which limits her mobility...Meaning she can't run or walk long distances for a while. She got "backed up" even vomited..I did a Miralax cleanout. She seemed better then it started up again so obviously not better. Called the clinic. started Miralax once a day. Still felt like she wasn't pooping enough...Did a belly X-ray showed moderate stool and gas in small and large intestine...Told to do another Miralax clean out then keep her on miralax 2 x a day...She also drinks prune juice every day. Takes culturelle once a day. Yesterday, daughter complained of feeling "bloated" and belly cramps. She was, gave her an extra Miralax last night..So that was 3 doses in one day; plus her prune juice plus dried fruit.

Today, her belly is not bloated. She pooped liquid first then small soft poop...Feel like I can't get a handle on this. She said her belly feels better, she said she does not think I need to call the doctor.

Before this whole injury, daughter only used Miralax once in a blue moon, like once a month. She was able to stay regular by drinking prune juice and eating a good diet.

My plan was to see how she feels today. She's at school now and call if she complains again. I do feel like her poops are not big enough. When she goes it is a small amount each time. During the clean out she pooped about 9 times small and then one pretty big one at the end. Also, I am sure I don't see every poop because she flushes and is a tween though pretty laid back about letting her mom check her poop....
 

Ratatosk

Administrator
Staff member
Ugh, we dealt with this for the first 5 years with ds. We'd clean him out, he'd be fine. Then his eating would decrease, stomach would be distended, sometimes he'd vomit... Vicious cycle. We found with him though because his eating REALLY decreased -- a chicken nugget would make him full --- and he'd vomit if he ate more that his was caused by adhesions from his original surgery narrowing a portion of his intestine so his enzymes weren't getting where they were supposed to get to. So his issues were mechanical in nature once they figured it out.

That said, his digestive system for the most part is pretty normal; however, if he gets a stomach bug -- we deal with motility issues for days if not weeks. And if I don't limit his peanut, nut intake to just a couple small portions a day, he'll get plugged up and it's time to break out the milk of mag.

Might be time to have a gi scan or motility study done. Although having a tween girl I can't imagine how a gastropgraphin (sp) enema would go over. Or it might be time to switch it up to golytley or oral mucomyst. I know a couple people who take mucomyst orally to clear out the gunk -- usually mixed with coke or juice to mask the aroma.
 

Rebjane

Super Moderator
Thanks. I thought she might need something different than Miralax, like golytely..I think it takes disgusting as well as mucomyst. Might be a hard sell as Miralax takes like nothing.

Did your child have surgery for the adhesions?

My daughter had surgery at birth for meconium ileus bowel obstruction. Then at 5 months emergency surgery for another bowel obstruction because of adhesions from the original surgery..She was full of adhesions:( That was 11 years ago....How would I figure if this is adhesions vs constipation.....These are things are need to write down and discuss with doc.

I should also mention her weight is good...Almost 5 feet..108 pounds
 

Ratatosk

Administrator
Staff member
DS had surgery when he was 6 for an obstruction and he pretty much had issues a year or so prior to that with vomiting undigested food HOURS after eating, sudden sharp pain then he'd vomit. That usually occurred if he ate more than usual. But there was no rhyme or reason, it was sporadic -- we thought it was him being picky, taking his Zithromax around dinner so we switched to bedtime. We were able to maintain 50th percentile because we pushed carnation instant breakfast made with cream and whole milk, so figured after the fact it was able to slip thru the cracks, but he was beginning to lose ground. Through out all this he was still stooling and we didn't need to use milk of mag. His stools were also looser and orangish which we figured afterwards was because his adeks vitamins weren't getting digested properly either.

His issue with constipation -- large intestine pretty much full of stool. Sometimes after treating with milk of mag, his stools would first come out and have a coating of mucus on them, similar to a sausage casing. Which I suppose is why some use mucomyst. Then everything would break loose and he'd have numerous, much looser bms. Obstruction -- by the time it got serious enough for surgery -- his colon was clear, stool backed up in the small intestine. So they tried gastrographin enemas to get it to release, but the stuff in his small intestine was harder, more tar like. Meconium equivalent.

DS' intestinal tract can be tricky at times. No rhyme or reason. Which is why I pretty much panic after every stomach bug because he doesn't bounce back right away. And about the time I'm ready to load him in the car to the clinic in the city after weeks of decreased appetite, limited stooling and vomiting because of motility issues -- he perks right up as if nothing was wrong.

I'm sure you're doing it already, looking for a pattern, trying to figure out what works... Don't they have a flavorless golytely? Or could you/do you mix miralax with an electrolyte (Gatorade type) drink.
 

Aboveallislove

Super Moderator
A couple more thoughts. Our son had a huge improvement when we went from .5 culturelle to 2 a day...best six months if his five years of life! We also have daily milk of mag but new gi gave us a new clean out procedure if he has the constant tummy aches which is to increase miralax to double his daily and to add in senna which helps push through. Also our new gi told us the liquid taken with miralax doesn't count toward total hydration because it is absorbed or not, can't remember which...so we also added three to four 8 ounces of water without miralax which also helped. Hang in there!
 

Rebjane

Super Moderator
Thank you for your input. I thought about increasing her culturelle.. It won't hurt anything. I called the nurse and she's sending an email to the doc. Might not hear back til tomorrow cause he's not there today; but that's ok...The belly thing makes me very anxious.
 

Aboveallislove

Super Moderator
Ps our gi today also stressed not stopping miralax even if he is spooling well or a lot or too much...I didn't listen to the why because one dios hospitalization and it would never even cross my mind to do. I think for some CFers the need for daily miralax comes later tha. Others. We're at 2.5 doses and have been for a few years.
 
T

TerriC

Guest
My daughter is 26 and has been living with severe GI issues now for the past 7 or 8 years. She also had meconium ileus but never had too many serious tummy issues when she was little. It is very serious now as she is almost always in some kind of pain has trouble keeping food down and is vomiting on a daily basis. One thing that has helped though is switching from golytely to peg flakes which can be dissolved in water and has no taste. Once she started on these she has had more formed bowel movements instead of just liquid. We are in Toronto and have a very good GI clinic that works with our CF clinic so I don't know if peg flakes are available at your clinic. I really hope you can get a handle on this soon as I totally understand how distressing it can be on you and your family. To the other posts that responded to this - was surgery performed to cut out the adhesions? We have been told that surgery at this point is the very last resort as it could lead to much more complicated issues.
 

Rebjane

Super Moderator
Daughter had another belly X-ray today, compared with last one no change. Full of poop. no obstruction. They are going to call us tomorrow with instructions for yet another clean out getting recommendations from the GI doc. Sounds like a colonoscopy prep...I don't know....
 

Aboveallislove

Super Moderator
Augh. So sorry. Hugs to you and her. We finally got a "mini clean out" procedure after our last GI appointment when I said "I really hate calling every other day to say he has tummy aches" and stressed how I just finally upped his miralax (within the limits we had, but higher than maintence) and it stopped the pain. When they first said "clean out" I'm like woooo, can't there be a middle ground for when it starts? And that's what they gave me. Not sure how it will play out, but I like that idea better than having months of tummy aches and then a full blown clean out. The mini is what I posted above. The real clean out has much more miralax. Good luck and hang in there!
 

Katie615

Member
I am 28 and I have had these problems my whole life. When I was a baby I could not pass my meconium illeus, but they thought I had hirschbrungs disease. Long story short I had several surgeries and a colostomy. When I was three they were able to reattach my intestines but it left me with a lot of scarring and adhesions.

Miralax is safe up to four times a day - at least that is what my doctors at UCSF tell me. Some other things that help too are mineral oil enemas and magnesium citrate (the lemon flavor is best, and cold). I have had golytely often, but only through an NG tube in the hospital, I never drank it, but that stuff is no joke. Little side note: whose the ironic fool that came up with the name golytely - because that is not what happens. Last time I was in they did gastrographen (sp?) down my NG tube and took a bunch of x-rays at different intervals to see if it was going through okay (I have also had this in enemas version as well). I have had imaging done where you eat radioactive eggs then they look at how far the food has progressed every hour for four hours.

My doctor told me that when your intestines get backed up, they stretch. It take a few weeks for them to get back to their normal. For those few weeks you should really try to stay cleared out so that you can get back to the normal easier without repeat episodes of constipation and/or vomiting. For me that means staying on top of my miralax and eating easily digested food. Last time this happened (a few months ago) they put me on a low residue diet (if you want more information on this let me know, my CF dietician gave me a whole packet about what to eat and not to eat) for a little while and that seemed to really help. It didn't make sense to me at first because if I can't poop, wouldn't I want more fiber? Apparently not. The idea is that if you are already getting stuff stuck in your gut, adding indigestible foods (anything with fiber, really) then your just adding more stuff to the already stuck stuff. After I did this for about 2 months I slowly started to add fiber back in and now I am back to my normal before I had any issues (my normal is miralax once a day).

Some foods that really got me through were loaded baked potatoes, well cooked carrots, ham and chicken, plain chicken soup with rice and carrots, plain pasta with butter and parmesan cheese, english muffins, Jello-O and pudding. I know that seems very bland but I also have CFrD so I am limited on my sugar intake. Otherwise I would have been eating PopTarts and Lucky Charms. There also might be trigger foods that upset her digestive system. Up until recently I could eat nuts without a problem. Now they completely stop my digestive system and within hours I am on the bathroom floor in crippling pain and vomiting. I thought it was just me but there is another CF patient at my clinic that can't eat peanuts because the same thing happens. Another food that does the same thing to me is quinoa.

All of these suggestions are just based on my experiences, but I hope that some of it can help your daughter.

Good luck to the both of you :)
 

Rebjane

Super Moderator
Thank you Katie. That makes alot of sense. I would love some more ideas about the low residue diet. What to eat and what not to eat. Chicken, rice potato, my daughter loves.
 

Aboveallislove

Super Moderator
Katie that was so informative and now I also feel vindicated. Our ds who also has tons of problems was supposedly not getting enough fiber so we got the drink supplements with fiber. I swore they would immediately back him up. Everyone thought I was crazy but the drink supplements without the fiber debt do it and if he heaven had one with it was presto tummy ache!
 

LittleLab4CF

Super Moderator
For many CFers, GI problems define the major issues. Certainly this is my case, my lungs are fine but I've had GI issues my entire life. When this thread got started, Rebjane was in search of a new pediatric CFGI specialist. Good luck on that one, I've been looking ever since I was diagnosed by a good one. I almost wonder if seeking a pancreatologist would yield a doctor that is more in tune with CFer's brand of GI problems?

Malabsorption and maldigestion are hallmarks of CF. Pancreatic juices and bile are problematic. Small duct disease is ubiquitous in CF and this means that even perfectly thin bile and digestive juices are impeded from arriving in sync with the food, if at all. The pancreatologist that first diagnosed my pancreatitis drew up some fresh pancreatic juices in the testing process. I kept a sample of the sampled fluid mainly because I was astonished at how viscous this body temperature liquid was. Like cold honey! Our bile is extra salty, extra thick and we make triglycerides faster than the liver can process and push it into the bile ducts. Children don't have gallstones! But CF children do plus the sodium bicarbonate produced by pancreas is in such high concentration, it's virtually impossible to express it through the pancreas and pancreatic ducts to the duodenum and food. This condition precipitates pancreatic autodigestion where enzymes and powerful concentration of bicarbonate breakdown the protective mucus membranes and attacks the living pancreas. Ouch times ten to the fifth.

When we fail to properly digest and absorb food, predictable problems develop. Fecal volume literally exceeds the intake volume and its thick, sticky consistency fights the parastaltic action of the intestines. First, all the thick, sticky mucus that isn't coughed blown or spit out is swallowed or drains into the stomach. There it's met with much stronger than normal stomach acid, courtesy of CF, and here food is treated with amylase and HCL turning all food into a goo called chyme. Normally chyme is like bread pudding puréed in a blender and it squeezes through the lower stomach valve into the duodenum to be met by bile and enzymes. If the stomach acid is strong, depending on the meal it is turned into an adhesive like goo which doesn't get better.

I remember the TV show "Mc Gyver" an adventure yarn with solutions only found in weird science. In one episode Mac is caught in the break room of some underworld laboratory, and a broken pipe is leaking chlorine gas or such, eminently asphyxiating him and some darling foil. Mac buys a chocolate bar and finds some acid. He's of course pinned under the vending machine and his disbelieving gal patches the leak with an acid coated candy bar. Mac explains his methods of madness each episode after saving the world. In chemistry two reactions are very prevalent, reduction done by acids and oxidation done by caustics like ammonium hydroxide (ammonia). Mac's little trick demonstrated that sugars, proteins and lipids are reduced to plastics in the stomach. Caustics like sodium bicarbonate do the same thing and between the HCL in the stomach and whatever bicarbonate is expressed by the pancreas perform a chemical digestion called reduction-oxidation or REDOX reactions. Mess with food and redox reactions and you too can make plastics from soy, something Henry Ford came up with when iron was rationed for war materialle.

If food isn't adequately digested it becomes cohesive and adhesive so it sticks together and sticks to the intestinal walls. This can result in a soft blockage or blockages called Distal Intestinal Obstruction Syndrome or DIOS. DIOS can be chronic or acute and both. From what I've read and discussed with GI doctors, DIOS feces routinely adheres to the intestinal mucosa and tears it off when it moves and sticks again. This has two effects. Food/fecal transit is slowed down and the continued bowel spasms squeeze more and more water out which is reabsorbed, leaving dry, hard stool stuck to the bowel walls. The constant ripping of the delicate mucus membranes in the large and small bowel leaves them swollen, tender and vulnerable to infection. In other words IBS, Crones, chronic pancreatitis and generally a seriously miserable feeling gut.

About four years ago I embarked on knowing everything about bowel health. By following all the guidelines for good bowel habits, most constipation can be avoided. Dig out a Mayo Family Guide to Medicine or such and there's a s***load of what's involved in total bowel health. Eating and hydration is a given. Fiber is both soluble and insoluble roughage. Which type and the amount of fiber requires some consideration. I avoid natural fiber because it shreds my old, delicate GI tract. Roughage is good for us as long as it doesn't make matters worse. Natural fiber produces natural gas and despite the aroma, gas interspersed throughout the food expands and concentrated amounts can be under so much pressure as to blow a hole in the bowel. Diverticulosis is caused in part by gas pockets inflating a weakness in the bowel wall. Take natural fiber only if you can do so without creating problems without substantial benefit. Mirilax is not supposed to cause gas, but it seems to do so. Mirilax is man made Polyethylene glycol or PEG, a synthetic soluble fiber. Lactulose is a natural soluble bulking agent (fiber) and they work the same way. Lactulose is an indigestible sugar that sucks up water creating a gel like semisolid. Bulking agents are intended to concentrate a lot of weight in a relatively small volume. Involuntary bowel spasms travel from the stomach down the GI tract in waves called parastalsis or parastaltic waves. Food mass is usually sensed by special nerves surrounding the intestines. Properly digested food starts with high density and volume that reduces as we absorb nutrients.

The sensation of full bowels requires an alternate sensation of being empty. Maldigested food increases in volume and loses density, filling the bowels and locking parastaltic action off. The result is either soft or hard constipation, or flat out backfilling the GI tract. Although maldigestion is often at the center of our particular brand of GI misery, other problems result in the same issues.

Everything that was volunteered by preceding contributors is valid. The less appealing mineral oil, swallowed by the teaspoon/tablespoon should be legitimately trialed if it hasn't been tested. Mineral oil, NOT caster oil, is inert and effective in keeping our delicate mucus membranes slippery. Sodium citrate is very effective and when action is critical, it doesn't fail. Feeling the heft of a bottle gives part of its magic away. The sodium in it or other electrolytes like magnesium and potassium in salt forms causes water to gush through every molecular pore, adding bulk and mass that stretch and weigh against the intestinal walls, stimulating the nerves into parastalsis. Stimulant laxatives like bisacodyl sodium are actually irritants and the bane of laxative abuse. Milk of Magnesia is a safe alternative in kids because it draws in water and coats the intestinal walls, keeping them slippery and is sensed by the nerves that put parastalsis in action.

Chronic conditions like those caused by CF are very hard on the gut. Everyone experiences indigestion or constipation/diarrhea and the occasional stomach bug. After the cornea, gastric epithelia are the fastest growing cells in the body. How can living flesh digest flesh without digesting itself? Sometimes we don't and occasionally insulting the gut leaves healthy periods to regenerate. The chronic part of our GI issues makes otherwise effective bowel health extremely challenging.

I could write a chapter on the intricacies of keeping the GI tract clean and moving. In fact I have written a paper on it. For all I know about the scoop on poop, I'm constantly screwed up. I've solved the problem of hard constipation but soft adhesions of DIOS can put me down for days. The bowels move almost daily but pain and nausea is constant and sometimes debilitating.

This ends full circle. GI doctors manage our problems but rarely fix or cure them. Like the days when doctors smoked, even though they knew what to tell their patients, they rarely get proactive and offer effective advice. I'm developed a little jaded when it comes to GI doctors and I admit it. A CFGI specialist may come in the form of two or more specialists and I feel a pancreatologist, rare as they are, can do the science of digestion. Fecal elastase tests or steatorrhea and fecal volume tests are useless unless they're interpreted to expertly manage digestion. What's somewhat frustrating is the knowledge required to maximize bowel health is worthless unless it's in the head of the patient/parent and though simple for the most part, there's a lot of it. Details like reserving a time or times each day to try and have a BM aren't imparted by most GI doctors along with a consistent meal schedule but both tricks are hugely helpful in keeping cleaned out. A few months ago my GI doctor suggested I try probiotics! Duh, I've been taking them, eating/drinking various cultures and dosing with extra magnesium and a heck of a lot more for decades. Becoming an expert on managing bowel motility is a big subject. I have found that GI doctors are great for GERD, gastritis and other conventional disorders. The matrix of everything involved in digestion is such that the best medicine falls short.

Keep fighting and be healthy,

LL
 

Rebjane

Super Moderator
Littlelab,

Thank you, Wow. I am speechless. I am going to your above post as a reference. My daughter did a miralax colonoscopy prep this weekend at home and I am not convinced she's cleaned out. I have a nagging feeling things are going around an obstruction, scar tissue or something. I plan to bring her in to see anyone who will listen to me and take more imaging of her colon and make a solid plan or how to get this poop out. When my daughter has a respiratory infection I feel like I have been trained into action to know what to do. I am feeling a little lost on this GI issue.
 

LittleLab4CF

Super Moderator
A colonoscopy is aborted when a blockage is encountered or a prep failed to cleanse. I've probably had 20 colonoscopies and two were stopped because of mucus that didn't clear. The resolution of a scope is sub millimeter, as small the inside of the mint mark of a Denver dime. The pictures after a colonoscopy are proof that the entire colon has been run. It took me years of looking at these boring shots to realize that it's like gate cameras in a slalom race with the illiac valve at the junction of the large and small bowel proof of crossing the finish line. Any remarkable artifacts in the colon are well worth it for those pictures. Adhesions that would restrict the flow of food/feces might be seen during a colonoscopy, scars from surgery that severed/rejoined the bowel should be visable from on the interior wall. Any attachments on the outer membrane won't be seen unless it's distorting the bowel when the camera is just right. Here's the rub, in order to see anything they inflate the bowel so air is distending everything right in front of the camera. Voicing your thoughts and concerns right before the procedure would have been a good suggestion, sorry about that.

My wife recently was checked stem to stern and what was novel for both of us, PillCam. She swallowed a pill sized camera that took three pictures per second for about five hours. Now I want one! Insurance didn't choke on the $10k tab and it revealed six small ulcers in the mm range. Check it out, any CFer suffering GI problems should be getting in line. Crone's disease is a small intestine condition, usually. My CF father had Crone's and his was apparently severe. I have long compared his Inflammatory Bowel Disease (IBD) to my small bowel issues and concluded I didn't have it. I've also had a few barium swallow studies. A barium study wouldn't have caught any of my wife's small ulcers. Due to the small diameter of the small intestine and the capsule camera shape the images are natural, no air or artificial distension. The large intestine is too big and the camera can turn and tumble, too bad.

I hope they determine for certain what's going on inside your child. I know that there's a good chance nothing will be found because a colonoscopy only sees the lining of the colon. Diverticulosis is far larger outside the colon than in. A high resolution abdominal CT will reveal the exterior wall of the colon and any attachments or mesentery adhesions to the outer wall will be imaged. This might be your next step in finding or eliminating the concern a spot or spots of colon are restricted.

We rarely notice this but the intestines are usually quite loose, contained within bag like membranes. Looking at an abdominal cavity filled with the large bowel framing the small bowel in a mess in the middle. Our colon does not have corners in the way it appears, loosely hung at the upper corners, it straightens and folds as required to accommodate a wide variety of fecal forms. An adhesion could seriously empede the transit of a hard stool.

Hope the colonoscopy answers your child with a solution,

LL
 

Rebjane

Super Moderator
Little lab,

My daughter, just to clarify, is not having an actual colonoscopy, she had the prep part to try to clean out her constipation. We're still evaluating and working on a plan to relieve her problem and solve her issues.
 

LittleLab4CF

Super Moderator
My apologies, I was writing without going back through your threads. I had lost confidence in my steel trap memory and "your child" was just lazy. I used it a couple times in the end and it bothered me. I had written both long posts on a Droid. I was still getting text messages in the wee hours today. I quickly silenced my phone and unknowingly hit the Airplane mode, disconnecting from the internet. I lost the last hour of my thumb and one eyed squint typing.

I get the slight, the insulting sense somebody is not really paying attention. At my father's funeral, a brand new minister who barely new our family had insisted he preside over the funeral in spite of our long time pastor's arrival in town with plans of performing the service. We suffered through the ecclesiastical ramblings of the service done with "this man" inserted where his name would have been used. He had forgotten his name! I wanted to stuff him into a flower pot.

I still haven't gone through the thread again but yes I was 99% certain she's a tween girl. Then again another contributor referenced her tween's attitude, sympathetic to what might be embarrassing for your daughter. I again could be wrong, my laziness bit both of us. I will not do it again.

I am so sorry,

LL
 

Michael Allison

New member
I have a history of acute pancreatitis bouts. Ever had those? I had small bowls obstruction in April - miconium ilieus - I do miralax daily it seems to help regulate but is not a cure for the sludge, but does help. I am 38 and was diagnosed with CF when I was 7. 99% GI issues my whole life. Pancreatitis in August and pancreatitis again last month. I was referred to a CFGI specialist out of state so hopefully they can help. Pancreas is nearly chronic. I found low fat (stay away from saturated fat) diet helps some. There is no one fix, it all depends on your own body. Trial and error most of the time. Right now I can't find a fix except possible pancreatectomy. So my advice start early and take good care of your GI system.
 
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